“The future is uncertain for us all. Cancer does not define you; it’s how you face it that does.”
“Cancer changes people. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly and lives more passionately.”
Tuesday 20th January 2015
Please scroll down to see further posts in date order.
On the recommendation of my friend Shaz, I have decided to follow her example and start a special page on my blog about my cancer journey.
The Reasons for This Diary
My primary aim is to give myself a platform for setting down in order what happens to me over the coming months. I believe this will help keep my thoughts in order – something which is often hard to do when you suffer from brainfog which is a common M.E. symptom. It will also be an emotional outlet for me, as I try to express my feelings honestly. I would also like humbly to think that it might help others going through the same experience, maybe answering some of their own questions, and to help them realise that they are not alone.
If, as I hope, the initial surgery is sufficient to solve the problem, this diary may be of short duration – which would be the most satisfactory outcome! However, I am realistic enough to know that anything can happen, and I have no idea how long it will take.
Before I begin, some things to remind myself that I stand on a solid foundation.
Romans 8:28: And we know that all things work together for good to those who love God, to those who are the called according to His purpose.
Romans 8:37: Yet in all these things we are more than conquerors through Him who loved us.
What Cancer Cannot Do
Cancer is so limited...
It cannot cripple love,
It cannot shatter hope,
It cannot corrode faith,
It cannot eat away at peace,
It cannot destroy confidence,
It cannot kill friendship,
It cannot shut out memories,
It cannot invade the soul,
It cannot reduce eternal life,
It cannot quench the spirit,
It cannot lessen the power of the Resurrection.
The Initial Diagnosis
Yesterday I had my regular two-yearly colonoscopy as part of the management of my ulcerative colitis. Afterwards, a specialist nurse took us into a room and explained to us what they had found during the procedure. I had been made aware from the beginning, when the colitis was first diagnosed in the summer of 2013, that sufferers of inflammatory bowel disease (ulcerative colitis and Crohn’s) are more at risk of developing bowel cancer than the normal population, and that this is one of the reasons for the regular colonoscopies, to check for early development of cancer. I knew this with my head, but now I realise that in my heart I never thought that would apply to me!
While the colonoscopy showed that the treatment for my colitis is working well, and the area of inflammation is much reduced, they found something which they said they “didn’t like the look of,” in the middle of the still-inflamed area, at the right-hand end of the transverse colon. A bit further along the transverse colon they also found a polyp, often pre-cancerous, and which they normally remove during the colonoscopy, but because of the problem area, they left it in place for now. They took biopsies during the procedure, and are arranging for me to have a CT scan in the next fortnight. When I asked the nurse whether it was possible that it was benign, she did not answer in the affirmative, but merely reiterated that they didn’t like the look of it. This, to us, was enough to confirm that they already know that it is malignant, but they will apply science to confirm what they already know by experience, and this was reinforced by the further things she said, about future plans for treatment, etc. If they were not sure, she would not have gone into so much detail.
The CT scan will be of the whole of my trunk, from neck to bum. The nurse explained that so far, all they have been able to see is the tumour from inside the bowel itself, but the scan will enable them to see the whole of it. From my subsequent researches I can see that they will be looking to see how far it has grown into the muscle of the bowel wall; if it has advanced further into the outer membrane surrounding the colon, or even into the surrounding lymph nodes (not good because via the lymphatic system, cancerous cells can travel throughout the body). The scan will also show up any secondaries that might already have developed.
However, she said that they think they have caught it early, and all that may be required is for surgery to remove the affected part, and to join the two ends together. Because of the location of the tumour, which is “in our favour,” it is unlikely that I shall require a colostomy, which is very good news.
The nurse told us that she is the first point of contact with a multi-disciplinary team (MDT) which will be set up to manage my treatment. She gave me her card and told me to phone if I had any problems or questions; they are there to help me. The team will most likely consist of herself, my current gastro-enterology physician, a surgeon specialising in this area, an oncologist, and possibly others as needed – OT, physio, stoma nurse etc. From what Shaz has said about her MDT, this is an efficient team who communicate regularly and fully with each other and with the patient, who is given a ring-binder containing names and contact numbers of all concerned, and details of treatment and progress etc. They are very well geared up to deal with these problems, and the machinery is already in existence, ready to roll into action when needed. This is very reassuring.
After the scan, they will be in a better position to know exactly how to proceed. After surgery, they will put in place any further treatment that might be required, such as chemotherapy.
Ahead of surgery, they are also arranging an appointment with an anaesthetist for a fitness test, to see if I my general health is up to surgery. I asked what form this test might take, and the nurse said it was an exercise bike or treadmill test – at which I laughed and said that was a joke, sitting in front of her in my wheelchair, with my M.E.! I would never stay the course, and what I did manage would probably lay me out on the recliner for the next two or three days afterwards! They will have to find another way to see whether I’m up to it, but it’s all a bit academic, because if they consider I’m not fit, what are they proposing? If they just leave this, it’s most likely to be curtains for Shoshi! I’d rather take my chances with the operation! Anyway, we shall have to wait and see.
The operation will most likely be by keyhole surgery, which is a lot less traumatic to the body than traditional open surgery, and necessitates a shorter stay in hospital. My hubby had keyhole surgery for the removal of his gallbladder a few years ago, and I was amazed how quickly he recovered, although I had a job to get him to recuperate fully before launching himself back into work full-time!!
My emotions yesterday were as you can probably imagine. I did shed some tears, and had fleeting thoughts of “Why me?” I brought myself up short at that. We all know that cancer is very common, that bowel cancer is one of the commonest forms of all (and fortunately the most easily dealt with, with a high success rate), that bowel cancer is more common in inflammatory bowel disease sufferers, and that it is no respecter of persons. Why on earth should I be arrogant enough to think that I should be immune? Why NOT me, for goodness sake?
Last night I spent some time doing a bit of research, which was very helpful, and contacting many friends and family, and online friends on blogs and forums, filling them in with the news. The support and encouragement I have so far received has been overwhelming.
Today I am in fighting mood, and I have felt happy and upbeat. My hubby took me out for a lovely meal (planned before the colonoscopy) and I had the first proper outing away from the house for several weeks, apart from the hospital, which was a real treat. I am realistic enough to know that this feeling is unlikely to last, and that it might simply be a slightly manic reaction to yesterday’s news, and that there will be times when I am angry, confused, hurting (physically and mentally), and downright SH*T SCARED. My hope and prayer is that I will never turn in anger and frustration on others, most especially my beloved hubby, and that I will always retain a thankful heart, whatever the circumstances.
In this diary, I am going to attempt to be honest about my feelings, however negative they may be. This may be difficult for you to read. However, I believe that it serves no useful purpose to pretend that everything is fine, or that I am not worried or scared, or frustrated. Firstly, it will help me to vent my feelings in the form of the written word, and get them out of me. Secondly, I believe that even if it makes unpleasant reading, it will help any of you out there, who are going through the same thing, to “give you permission” to feel the same, and will let you see that you are not alone. I hope, though, that these negative thoughts and feelings will be relatively few and far between, and that the general tenor of this diary will be upbeat and full of hope and faith, and that these positive feelings will be expressed as honestly as the negative ones.
So... the journey begins.
Friday 23rd January 2015
This morning, the appointment arrived in the post for my CT scan, which is to take place next Friday, 30th January, at 5.20 p.m. They also enclosed a bottle of Gastrografin oral solution which has to be taken in two doses: two days before, and the day before the scan. This is a radio-opaque contrast medium which will enable my gut to show up on the scan. They will give me a further contrast medium immediately before the scan. It appears that I don't have to perform any dietary preparations, which is a relief.
I am feeling rather weird and detached about the whole business, and it hasn’t really sunk in. Part of me is still saying that cancer is something other people get, not me. I think this is partly because I don’t feel any different – no lump, no pain, nothing apart from the words of a nurse and a letter in the post to indicate that there is anything wrong at all. I expect once things start to happen, I shall become more engaged with the whole idea. I expect others feel much as I do. I feel quite cheerful, but I have been pretty exhausted over the past few days, which isn’t really surprising, I suppose.
You will see from my post on my regular blog for today that my hubby is doing his best to make things pleasant for me and to help me on the journey – he took me for a lovely outing yesterday.
And so the juggernaut has started rolling. Onwards and upwards!
Monday 26th January 2015
I am still feeling pretty unreal about this whole business, but expect it will become more real once they start poking me about and cutting bits out of me!
However, I have been thinking about my attitude and how I need to make a conscious decision about how I react to what is happening, and what will happen. First of all, I have decided that whatever kind of emotional rollercoaster I may end up on, I am not going to take out my feelings or my fear on those around me, and especially not on my lovely hubby, who has put up with more than enough from Mum lately. On this subject, for the last couple of days, I have actually been giving thanks to God for her appalling behaviour of late (although she is now behaving a lot better) – I never thought I could say that! I have thought about what it is like to be on the receiving end and decided that it’s a good thing I’ve had that experience, because I wouldn’t wish it on anybody, and I am forewarned, so I can guard against it.
I think the reason she’s been like that is because over the past couple of years, she has had everything important in her life stripped away, and her behaviour is the last vestige of control she has over her life. OK, it’s a bad decision to behave badly towards everybody, but it’s the only power she has, and it is understandable.
I have also been thinking about some sort of visualisation, to help me in my upcoming battle against the cancer. Our lovely neighbour from opposite popped in yesterday with cake and sympathy – she makes the most delicious low-fat chocolate brownies! She said that a lot of people give their cancer a name. However, I don’t want to do this, because farmers always say if you give animals a name, you can’t kill them lol! Shaz, whose example I am following by writing this diary, has given her colostomy a name (Sid!) but that is quite different – her hubby said she needed to think of it as an ally in her fight against her cancer, rather than something else to fight against, and giving it a name certainly helps with that.
A thought came to me today about the MDT (multi-disciplinary team) that is being set up to care for me. I like to think that I will be a member of that team, because I shall be working with them towards the goal of eliminating the cancer. I see the team like an army, with generals, officers, non-commissioned officers and men, each with a role to play in a very organised and structured way, fighting a war. I am the humblest of privates, who just has to obey orders and co-operate! The lovely thing is that this whole war is being fought on behalf of this particular little foot soldier, and that is quite a humbling thought – all that professionalism, training, expertise and experience being directed towards my healing and wellbeing. What’s more, on our wonderful NHS, it is free. I am sure that over the coming months there will develop a camaraderie as we learn to work together.
So think of me as I don my battle fatigues and knuckle down to the campaign. I shall get muddy and tired, probably resentful towards my senior officers at times, and feel powerless and desperate as they urge me ever forward, even though I may be thinking I can’t march another step with this load on my back!
This preparation time feels a bit like boot camp. Attitude training.
I am also thinking about the training I shall get while on campaign, and what I shall learn, just like in the army. I shall be given new skills, in coping, and new knowledge. I am eager to learn. I should like these skills and knowledge to be used in the future for the benefit of others – even if that just means that I am better able to understand what they are going through.
I am a conscript in this army, not a volunteer. I have no choice but to join, and make the best of it. In the face of impending war, we have to set aside our regular lives and personal preferences, because our lives are no longer our own but belong to the army, and for a season, we have to go where we are sent, dress in unfamiliar – and maybe uncomfortable – garments, conform to a new regime, and endure many hardships. I am fortunate in that I have many civilians making their own sacrifices on my behalf, and keeping the home fires burning while I am at the front. I am very sorry for the anguish they will be suffering on my behalf, and their own personal worries about the outcome, and if my attitude can help them in this, so much the better.
Maybe this war will be of short duration, but maybe not. At the beginning of WW1 they all said “It will be over by Christmas.” Nobody knows at the outset. We are all hoping for a brief skirmish, not a protracted all-out war.
So now, I await the arrival of the troop ship which will take me who knows where. I doubt there will be any medals, or even mentions in dispatches, but that’s not important – what matters is that the war is won.
My hubby is spoiling me rotten, bless him! I told someone the other day that he is my rock and my star, to which he replied, “But I’m not a rock star” lol! (Believe me, nobody wants to have him sing at them – I always try and protect the kitties when he does it at them!) After Jesus, he is my rock – my foundation – and my star – my guiding light.
[Note: When I had my pre-assessment appointment with the anaesthetist prior to my surgery, I told her about this visualisation and she said that my being a lowly private having to obey orders was not an accurate analogy, because she emphasised that I was to be fully involved throughout in the decision-making, and nobody was going to force me to do anything. I take her point, and every metaphor or visualisation has its drawbacks and falls down in one or more details, but I did find this analogy helpful.]
Wednesday 28th January 2015
I am feeling very tired today after our busy day yesterday (lunch out, and a drive down by the sea) so I have been resting most of the day. I feel as if I am in limbo – suspended, untethered, unable to settle to anything constructive.
At lunch time today, I took my first dose of the contrast medium the hospital sent me with my scan appointment. I have to take the second one tomorrow, and then they will give me some more just before the scan. It is in the form of a clear, somewhat syrupy liquid that you have to dilute with water, and drink. Why do they always flavour medicines with aniseed? I HATE the taste! The battles we’ve had over the Gaviscon, to get them to give me peppermint!
Nothing of note to report, really. While I do not relish what is to come, I am anxious to “let battle commence” now, and get on with it, and get it over with. I am not worried about the scan on Friday because all I have to do is let them post me through the scanner and then we’ll come home. However, it is the consultation to come after the scan that I am getting nervous about, because it is then, after they’ve analysed the scan results, that they will tell us what they have found, and whether or not the cancer has spread... I am trying not to think to far ahead, and stick to my resolve of dealing with one day at a time, but it’s hard not to think about that day. I don’t even know when it will be. I think it will be the worst day, because that is when they’ll give us the facts, for good or ill. After that it won’t be so bad, because we will know what we are dealing with, and it will just be a question of doing what they say, step by step, and enduring all the various surgeries and treatments etc.
Limboland is not a nice place. It is a barren land, with pitfalls for the unwary – of fear, anxiety, looking too far ahead. These little pits in the ground can cause you to turn an ankle or trip, and many of them are camouflaged by stones and dead leaves, and you have to watch every step to avoid falling. There are occasional signposts planted at random in the ground, pointing nowhere. It is a featureless, beige place with no clear path leading anywhere, and overhead, dominating the sky, is a brazen sun in the form of a clock, ticking inexorably, ticking away the hours and days but with no end in sight, and a voice chiming, “Wait! Be patient! The time will come!” It is a dream landscape from which you want to wake up, but cannot. I am suspended, detached from my normal routine and the reality of my life. It’s almost as if I am unable to feel anything.
It takes me back to those awful months during the summer of 2007 when I was waiting for my M.E. diagnosis, when I was in a different sort of Limboland, with the frightful experience I had with a very unpleasant neurologist, and the fear they’d tell me it was all in my head. During that time, I was filled with anxiety – not like now; I was all over the place, wondering what was wrong, and fearing M.S., and all the while dealing with a deterioration in my health with ever decreasing mobility, and a succession of viral infections throughout the summer, and a lack of understanding from family and friends. I was given lots of “diagnoses” and advice from totally unqualified, ignorant people who all seemed to have The Answer and were all falling over themselves to give me their pearls of wisdom and I just wanted them all to Shut Up!! It was such a relief to get a “label” for what was wrong, when I eventually got a diagnosis in the autumn of that year.
This time it’s different, because I know what is wrong, but what I don’t know is how bad it is, and exactly what they propose to do about it, beyond the bare bones of knowing I’ve got to have surgery. I am not suffering the agonies of anxiety or frustration with those around me; I just feel detached.
Come on, Shoshi, stick to your resolve not to worry! Remember the Scriptures from Romans! Hang in there! You have yet to meet your superior officers and hear their battle plans. The troop ship hasn’t quite arrived yet and you need to keep up the training in the Boot Camp!
Thursday 29th January 2015
Will I be Fit?
Today the hospital phoned to make an appointment for the pre-op fitness test. I spoke to the consultant anaesthetist’s secretary and we fixed the test for 11 a.m. on Wednesday 4th February (next week), and it is unlikely that surgery will take place too long after this, or the results of the test may become irrelevant, so I expect we are looking at some time mid-February for the operation. She said they had a note that I wouldn’t be able to do the exercise bike test, and the anaesthetist would probably check my heart and breathing. I told them I had left bundle branch block (a problem with the electrical impulses in my heart, with a characteristic ECG trace which interferes with any other abnormal traces, rendering an ECG less useful for testing) and she made a note of that, and also of the fact that I had a coronary artery spasm in the summer.
I asked what the point of it all was, because if I was deemed not to be fit, what would they do? The cancer has to be removed or it will spread and eventually kill me, and if it’s a choice between that, and an operation which might kill me if they don’t think I’m fit enough for it, I said I’d rather take my chances with the operation, thank you very much!! She said it was a bit more complicated than that; they might determine from the test that I could need extra help after the operation, if I was vulnerable, and if so, they’d arrange an intensive care bed to be available just in case. They are obviously being very thorough. I am sure I shall be passed as fit for the operation, though.
I am very grateful to all my online friends (and the non-online ones too!) for their prayers. Today I am feeling better again emotionally. I think I wasn’t dealing with it so well yesterday because I was very exhausted and suffering from some payback from our busy day the day before – I have to factor in the effects my M.E. has on me, which is an added complication stirred into the mix.
I’ve just got to be patient and take each day as it comes, and try not to worry about the consultation after the scan, when they tell me exactly what we are dealing with – that’s the one that is making me nervous. It’s just fear of the unknown at the moment. Once we know, we’ll just proceed with each step as it comes, and deal with it a day at a time.
I took my second dose of contrast medium today, as instructed, so I am all ready for the scan tomorrow afternoon.
Friday 30th January 2015
Through the Stargate
Today was the day of my CT scan. CT = Computerised Tomography, where a series of X-ray images are taken in the form of slices through the body, a bit like a joint of ham on a meat slicer, but I am happy to say these slices are virtual only, and Shoshi, you will be pleased to hear, is still in one piece! From these slices, the computer can create a virtual 3-D image. The CT scan can differentiate between different types of soft tissue and can show the difference between cancers and normal tissue. Thus the scan is able to show the extent of the tumour and how far through the bowel wall it has grown, and whether it has spread into any other organs.
My appointment was at 5.20 p.m. It was a freezing cold, wet day and I’d have much preferred to have stayed home in front of the fire with a kitty on my lap! We arrived early enough for me to get comfortable, as the hospital was nice and warm, of course. I didn’t want to have to strip off when I was freezing cold! However, in the event I didn’t have to remove any clothing at all. The only thing they worry about is trousers with metal zips but my trousers had an elasticated waist with a drawstring.
After waiting a while, someone came into the waiting area with a large jug of clear liquid and a plastic cup, and instructed me to drink it ALL! I had expected another small dose of contrast medium like the doses I’d taken yesterday and the day before, but there were gallons of the beastly stuff – aniseed-flavoured, of course! I did manage to get it all down and had a hefty chaser of water afterwards! Fortunately they kept me waiting for at least another three-quarters of an hour before calling me in for the scan, which gave me the opportunity for two visits to the loo to get rid of some of the excess liquid!
Entering the scanner room, I was very impressed by the appearance of the scanner itself – it resembled nothing less than a Stargate! For anyone who hasn’t a clue what I’m talking about, Stargate SG-1 is a sci-fi series on TV that my hubby and I enjoy – central to the series is a large ring which holds the entrance to a wormhole enabling travel to distant planets. Here’s a picture.
The central part of the ring revolves as the Stargate is activated, and then as the chevrons are engaged, the event horizon of the wormhole is formed, which resembles a vertical pool of shimmering water.
Here is a picture of a CT scanner.
See the resemblance? Lol!! During the procedure, the mechanism inside the ring of the scanner rotates and makes a noise, just like the Stargate, too! (To quote our favourite Col. Jack O’Neill, leader of the SG-1 team, before one particular mission: “We’ll need snacks.” Unfortunately on my mission through the Stargate, no snacks were forthcoming, unless you count the dreadful aniseed drink, but that’s not the sort of snack I enjoy! Ah well. One can’t have everything, I suppose.)
The bench is lowered so that you can climb onto it, and then it is raised so that the central moving part can be slid into the ring of the scanner with you on it.
When I was called in, I asked what was going to be done, because the specialist nurse who first spoke to us immediately after the colonoscopy had told us that the scan would be from my neck to my bum. However, the letter informing me of my scan appointment said that it would just be of the abdomen and pelvic region. I said I was concerned about this because a full trunk scan would be more likely to reveal any spread of the cancer beyond the colon. I was reassured when they told me that when the contrast medium was prescribed, this produced a computer-generated letter that was standardised; I needn’t worry because their referring letter from the doctor was as the nurse had said, that it should be of the whole of my trunk, and they apologised for the confusion.
I was asked to lie on the bench, and rest my head on the pillow they provided, and to produce an arm into which they would insert a cannula. I had to remove my thick jumper because the sleeve wouldn’t go up far enough, and because of muscle weakness, I couldn’t pull myself up on the bench – I have a bed lever on the bed at home to pull myself up, and could probably have managed to sit up if the bench had been wide enough for me to turn over onto my side, but as it was, they had to haul me up! After exposing my arm, I was told to lie down again.
Once the cannula was inserted, they left the room, telling me to lie still and obey the automated voice instructions regarding breathing. I had to put my arms straight above my head, and this was extremely uncomfortable, generating pain in my upper arms. I am sure this would not normally happen but with my M.E. my muscles can be affected by holding an abnormal position, such as at the hairdresser’s, when I find it physically impossible to sit with my head tipped backwards over the basin.
The bench moved me forwards, feet first, and posted me through the ring of the scanner. It took less than a minute, and part way through, it stopped, and I was told by the computer voice to breathe in and hold my breath. When the pass through the scanner was complete, it told me to breathe normally. This happened twice.
After this, they came in again and injected some contrast medium into the cannula, which produced the normal hot flush sensation, and then the feeling that one was peeing (I’d had this when the contrast medium was injected before my angiogram in the summer). When they came in to do this, I complained about the pain in my arms, and they put a block under them, which made them a lot more comfortable. They then left the room again, and the final pass through the scanner took a little longer, and with more whirring of mechanism. This was when I became aware of the rotational movement of the mechanism inside the scanner ring – just like the Stargate!
Once this pass was finished and I’d again obeyed the instructions regarding my breathing, I was told the scan was complete. I asked how long I could expect to wait for the results, and was told “a week to ten days.” I said I was anxious to receive the results sooner rather than later, firstly because this limbo period of waiting and not knowing what we are dealing with is not easy, which they could understand, and also because I have an appointment on Wednesday 4th February with the anaesthetist, to assess my fitness for surgery, and any delay between the fitness test and the actual surgery would surely be undesirable, because if too long a time elapsed, the fitness test would become irrelevant. They obviously cannot perform the surgery until the scan results have been analysed and assessed, so that they know exactly what they need to do. They said this was all understood, and I should not have to wait to long to hear; presumably I will be sent another appointment to come in to discuss the results with someone on the MDT (multi-disciplinary team), but this is unlikely to happen before the fitness test.
After this I was taken back to the waiting area, and told to wait there for ten or fifteen minutes, just to make sure I was OK and didn’t develop any reaction to the contrast medium. After this I was called into another room where the cannula was removed and a small dressing applied, to be left in place for two or three hours.
As a result of my journey through the Stargate, I am somewhat exhausted and definitely feel as if I’ve been on another planet.
Wednesday 4th February 2015
Fitness for Surgery
I had hoped to be called in for an appointment this week to hear the results of the scan, but have discovered that the MDT meets on Fridays at Torbay Hospital, so they won’t have had a chance to discuss my case until this Friday, which will mean that I won’t get an appointment till next week now, at the earliest. I should have realised this, because when Sally, the specialist colo-rectal nurse, broke the news to us of the cancer immediately after my colonoscopy, she gave me a print-out giving her name and number, and the examinations I would have to undergo, and on it was clearly stated when the MDT meets. However, I was in a bit of a state at the time and didn’t read it all properly, and dumped it on my desk until yesterday.
I started a loose-leaf ring binder yesterday, where I am filing all my appointments, Sally’s contact details, and various other bits and pieces, and I put this print-out in at the beginning.
This morning I went in for the fitness test to make sure I’ll be OK for surgery. This was with the consultant anaesthetist, a charming lady called Andrea. Sally had told me that the fitness test normally involved going on an exercise bike, which clearly isn’t on for me, and after telling my hubby that we’d be about an hour, we ended up just having a chat.
First of all she took my weight and height, and then sat me down. She said that in view of my heart attack in the summer, it was not really necessary to do the test at all today, because all the at-risk areas had already been extensively investigated quite recently. She asked about any other medical problems I had, and I informed her of my left bundle branch block (LBBB), and my hysterectomy in 1995. We spoke a bit about the limitations imposed by my M.E., and she is aware that my general fitness is low because of poor mobility. I gave her a list of my current medications and we talked a bit about my inflammatory bowel disease and how well I was responding to treatment, and also my chronic mild anaemia which could be the result of the ulcerative colitis, or the cancer, or both. She then had a pretty good idea of my general health, and went on to discuss with me what to expect as far as the surgery was concerned.
The surgeon will be the same one who performed the colonoscopy. From what little I saw of him at the time, he seemed very pleasant and friendly, as everyone at the hospital seems to be (how fortuante we are!). Apparently he likes to do as much as possible by keyhole surgery, but there will also be a larger incision through which they will remove the cancerous portion of bowel.
For many people, apparently, this is sufficient to deal with the problem, but until the histology is done, they won’t know for certain, and I may need some chemotherapy to make sure they’ve got rid of it all. Until I see the surgeon, I will not know exactly how much bowel will be removed, as this depends on the scan results, but I am anticipating most of the transverse colon (which includes the cancerous section at the right hand end, and also the polyp which is situated in about the centre) and probably part of the ascending colon as well.
I asked how long I could expect to be in hospital. She said that at this stage, it was not certain. It is not a question of “in on this date, so therefore out on that date,” but more a question of meeting certain targets and monitoring my progress until they are satisfied it is safe to send me home. For some, this is after less than a week, but for others it could be ten days or more.
I mentioned that my hubby had been in and out on the same day when his gallbladder was removed by keyhole surgery, but she said, “the gallbladder is only this big...” holding up her fingers, “and what we are talking about here is much more major surgery.” Again, until the scan results are in, and the surgeon has decided exactly what needs doing, and how I am post-operatively, they won’t know for sure.
She went on to discuss post-operative pain management, and I must say I was impressed by how much things have improved in the last twenty years – I had my hysterectomy in 1995 and afterwards I experienced the worst pain in my life! She pulled a face and said they’d hope to do a lot better than that. She said that in addition to the general anaesthetic, I would probably also have an epidural, and they also have the option of inserting a couple of lines behind the abdominal wall for the administration of local analgesia. These measures reduce the amount of opioid drugs needed; these can make one feel quite unwell. If morphine is required, though, this would be administered by way of a syringe driver, giving small, measured amounts as a top-up to the other pain management. I feel very reassured by this, because last time, I awoke feeling as if I’d been hit by a bus.
I told her that I had also felt extremely cold (I was in shock) and had to be wrapped in a space blanket. She said that these days, the patient is laid on a heated blanket during the operation, with warm air being blown over the body, so it sounds as if this will be a lot better, too. As for the extremely dry mouth I had had, she said there isn’t much they can do about that. They seem to have covered most eventualities, and I am not too worried on that score now.
I was told that I would have an arterial catheter inserted in my wrist. I know the procedure for this, as I had one inserted under local anaesthetic just before my angiogram. They will use this for the continuous monitoring of my blood pressure and blood gases etc. after the operation.
Having had a hysterectomy, I am familiar with the drains, catheter and intravenous drip, so none of this fazes me particularly because I know what to expect. While they are at it, they ought to wire me for sound and install a satellite dish for my post-operative entertainment. (It would be nice if they could scrape out some of my belly fat, too!)
Immediately after the operation, I will be in the recovery ward for a number of hours, or for a day or two, having intensive care, where the level of continuous monitoring is much higher than on the general ward.
My hubby is a bit shocked by the fact that I shall have to stay in a lot longer than he expected. I think he is only now taking on board that this is major surgery, and serious. I feel very sorry for him, because all he can do is stand by and feel helpless on my behalf. I can remember how he was when I had my hysterectomy – a worrying few hours when all he could do was go out for a walk, and then the further waiting for many hours by my bedside waiting for me to come round and be more my old self again. It’s so hard for the civilians left at home in time of war, to keep the home fires burning, not knowing what the outcome will be, and not being able to help fearing the worst. I shall do my best to behave and recover as quickly as possible, for his sake!
The anaesthetist was impressed with the loose-leaf folder I’ve started. Stuck inside the front cover is Sally’s card with her phone number and the name of her colleague on it – my first port of call to the MDT. Filed in order are all my appointments and instructions, from the colonoscopy preparation, which includes my own list of instructions in a way that was easier for my foggy brain to assimilate than the complicated pink letter they sent me! – and the menus I made for myself during the preparation period. I said I was keeping that, because I expected I’d have to go through the same bowel-clearing procedure before the operation, but she said that isn’t usually necessary, because they perform an enema to clear the rectum, and then clamp the bowel at each end where they are going to make the incisions. This is a relief, because that day being tied to the loo is far from pleasant, and I wasn’t relishing having to go through all that again quite so soon! In the folder I have also put some blank pieces of paper for notes and questions I might think of to ask. She agreed it was good to keep all the appointments in order.
She spoke about the hospital’s policy of full disclosure, and the benefits of involving the patient in the decision making process at every stage of his or her care; this can greatly aid recovery because it reduces stress and worry, and fear of the unknown. I said I’d been doing some research of my own and wanted to know everything – including the staging of my cancer, because I now know what this means, and it will tell me exactly what we are dealing with. I said I had no fear of asking for further explanations if there was anything said that I didn’t quite understand. She said that this was a good attitude, and when I told her I had a naturally positive and bubbly personality, she said this was of great benefit, too, as was my wonderful support backup in the shape of my hubby.
I told her that I also have great confidence in the hospital as a whole, because all our dealings with it in our whole family have been good and positive, and the care has been superb. She was very pleased to hear this. I know that I am in very good hands, and I told her so.
I told her a bit about the stress I’ve been dealing with since the time Mum was living on her own and not coping; our house move, during which my ulcerative colitis was first diagnosed, and I was dealing with a flare, and all the stress I’ve been under for the past fifteen months with Mum since we moved here. She jumped on that and said I must get this sorted before they proceed with my treatment, because I mustn’t be dealing with any stress, but I was able to reassure her that over the past week or so Mum’s behaviour has improved considerably, as her medications are starting to work and she is no longer depressed, and the fact that we have a care package in place, and a lot of the strain of trying to care for her on our own has been alleviated. She was relieved to hear this, and pleased also to hear that we are availing ourselves of local carers’ support. She said I must have peace and quiet and a calm atmosphere, and must avoid stress which could affect the success of the operation or my recovery.
This waiting period is the worst. I am sure that once we know exactly what we are dealing with, things will fall into place and I will feel more settled. At the moment I am finding it hard to settle to anything, and my creative mojo has fled. I haven’t even done any embroidery for about a week! I am sure this will change once we get more definite news. In addition to the strain of waiting, we’ve also had more outings than usual – nice ones (meals out with family and friends etc.) as well as all these hospital visits, and I am feeling pretty exhausted, which isn’t helping much. Although I am not worrying to the extent that I am losing sleep over this, I am not sleeping well at the moment and seem to be going back into that awful M.E. sleep pattern of frequent waking and bad dreams. Soooo not what I need right now!
So that’s the position with Shoshi for now. We may have another week before we get any news. It’s not easy, and I try not to worry about it too much. It’s the next appointment that worries me the most and makes me feel very nervous, when they tell us exactly what we are dealing with, and how bad the cancer is. At the moment, beyond the fact that I have bowel cancer and need surgery, we know very little.
We haven’t told Mum anything except that my colonoscopy revealed something wrong, and “I have to have an operation on my tummy.” Telling her I have cancer would be counter-productive because she has no knowledge of medical matters, and for her generation, the word “cancer” equals “death sentence” which is not necessarily the case these days. She asked if my bowel was swollen or something, and I said that it was – which is not too far from the truth, I hope! Anyway, she accepted that, and there’s no need to burden her with the whole truth of the matter.
Much as I am not looking forward to what’s ahead one little bit, I am anxious to get this show on the road, and over and done with as soon as possible. I am therefore a bit disappointed that this is taking rather longer than we’d expected, because of the scan taking place as far away in time from the MDT team meeting as it was possible to be. However, there’s nothing to be done about that except endure it with patience and fortitude and try not to worry! It will all happen soon enough.
Friday 6th February 2015
I have just received a phone call from Sally, the specialist colo-rectal nurse, to let me know that they have had their MDT meeting this morning, and that I shall be having an appointment with the surgeon, Mr. Pullan, probably towards the end of next week. I had thought that I would be under the care of Mr. Kenefick, the consultant surgeon who performed my colonoscopy, but Sally informs me that Mr. Pullan is the consultant with the most experience operating on patients with ulcerative colitis.
She was also able to tell me that the scan revealed that the cancer has NOT spread beyond the bowel (WHAT a relief!!!) and that the surgery will be considered curative. Only after the removed section has been sent to histology will we know whether I will need any chemotherapy, but this will be only to prevent a recurrence of the cancer.
This is a huuuge relief. They have obviously caught the cancer good and early.
Mr. Pullan will give me full details of the surgery at the appointment next week, and I am hoping soon after that to receive the date of my admission.
There’s a sensation of relaxation from a tension inside me that I wasn’t even aware was there until it had gone. I am sure this was the cause of my awful untethered feeling over the past two and a half weeks and why I haven’t been able to settle to anything. It was like a distorting lens, distancing me from my normal life which appeared fuzzy and unreal, and everything has suddenly snapped back into focus. I know that I’ve still got to get through the surgery and possible chemo afterwards, but at least we know now what we are dealing with, and the appointment with Mr. Pullan will clarify things further, I am sure.
I have just been sent the following link via Pinterest by a blogging friend, Craftie Jellie :
Ten Verses for an Anxious Heart.
When things are tough in our lives, we need to remember that we are safe in the hands of our loving heavenly Father, and that He will not test us beyond our strength to endure. Thank you for reminding me of this, Jellie!
Saturday 7th February 2015
More waiting... (However, compared with how long some people have to wait for appointments, and then again for operations on the NHS, they are certainly getting on with this with great speed, and for that I am thankful.)
The elation of yesterday after hearing that the cancer has not spread, has disappeared, and I again feel rather detached and unreal. I’ve also got a bit of gut-ache and diarrhoea, which is probably just the colitis, and all the fruit I ate yesterday! – but I am mega-conscious of everything going on in that area of my body at the moment so it isn’t helping!
I’ve been thinking a lot about the operation, and also thinking of things I need to ask the surgeon. I am jotting these down on a piece of paper in my ring binder, ready to ask when I see him.
Nothing of note to report at all, today, really, but I’m feeling the cold, feeling very exhausted, and generally wishing this would all be over. There are things I should be doing (washing my hair, doing the accounts, making my hubby a Valentine card, writing some letters, etc.) but I seem to have lost the will to apply myself recently! My creative mojo is still nowhere to be seen, which is a bit disappointing because I thought it would return as soon as I had definite news, and especially if the news was good, as it turned out to be.
I’m so tired... mentally and physically. Goodness knows what I’ll be like after the operation!!!
Tuesday 10th February 2015
Appointment to See the Surgeon
When we arrived home from the carers’ course today, the surgeon’s secretary phoned to arrange an appointment for me to come in and see him. This is for the day after tomorrow, Thursday 12th February at 12.30 p.m.
Unfortunately my hubby has another appointment at 12 noon so he is going to have to drop me off early – about an hour before my appointment, and then pick me up later. I told the secretary I didn’t mind waiting, and would bring a book. The lovely lady asked me to tell the receptionist when I arrived, that I was there, and she would come and give me a cup of tea! How very thoughtful.
Emotionally I am still feeling rather unsettled and the elation I experienced immediately after hearing that the scan showed that the cancer was confined to the bowel and had not spread, has evaporated. My creative mojo is still absent and I am feeling pretty exhausted.
Hopefully after Thursday I will have more information and will know more what to expect, and when the operation is likely to be scheduled.
Thursday 12th February 2015
Today was my appointment with the surgeon who is going to perform my bowel operation. My hubby had to drop me off early because he had another unavoidable appointment, but as it turned out, I wasn’t seen till half an hour after my appointment, and we had only covered the preliminaries before my hubby turned up, and was able to be with me for the bulk of it.
Originally I was going to have Mr. Kenefick, but was referred to Mr. Pullan, who specialises in patients with inflammatory bowel disease. He was absolutely charming and immediately put me at my ease. He was accompanied by Nita, the other specialist colo-rectal nurse, and the colleague of Sally, whom we saw immediately after my colonoscopy.
Initially, Mr. Pullan seemed rather reticent and hesitant, saying several times that mine was rather a difficult case… I wasn’t sure what he meant to start with, and why he seemed so unforthcoming, and wondered if they had discovered something untoward on the scan which I knew nothing about. I had originally been told that it would be a simple bowel resection, removing the cancerous portion and performing an anastomosis, the joining together of the two ends, and I was reassured that the site of the cancer meant that I would not have to have a colostomy. Mr. Pullan explained that having ulcerative colitis complicated the position somewhat, and he would also have to decide just how much bowel to remove, to make sure that all the cancer had been removed. At first he seemed very hesitant, and I wasn’t sure what was causing this.
He went on to say that in view of the fact that at my first colonoscopy in July 2013 there was no cancer, and now, only 19 months later, it is quite pronounced, he felt that if he were to perform a partial colectomy, he would have to remove the whole of the ascending colon and about three-quarters of the transverse colon, to include not just the tumour, but also the area where there is now a polyp. He said that with ulcerative colitis, and the fact that I had had cancer already, there was a much greater risk of it recurring in the remaining portion of bowel; the rectum was also included in this high-risk area.
At this point, I realised that he wanted to tell me something unpleasant and wanted to spare me, and wasn’t at all sure how I would react – he was definitely walking on eggshells! To put him out of his misery I told him that since my diagnosis, I had been doing a lot of thinking, and a lot of research, and had been in contact with others going through a similar situation, and if he felt that a colostomy was advisable, I would not be against this – I said I just wanted to do what was the best all round, and if he felt more radical surgery was going to be better for me, then to go for it.
The relief on his face was palpable! He said that when I said that, it made the decision making process on his part a lot easier.
He went on to explain if he did a partial bowel resection, the remaining bowel would be so short that the water absorption process would be seriously affected, resulting in my having permanent, serious diarrhoea, and the necessity to go to the loo at least six times a day or more, throughout the day and also at night; this sounded a worse proposition than how I was before my ulcerative colitis was diagnosed, when at least the diarrhoea was confined to the early part of the morning and late afternoon, but on average I was going 10 times a day, and suffered terrible urgency and frequent accidents. In view of my reduced mobility, this meant it took me longer to get to the loo than normal. I said there was no way I wanted to return to that situation, which in this case would be worse because it wouldn’t be confined to two periods during the day. If it was a choice between a partial resection resulting in this level of diarrhoea which would more or less confine me to the house and be extremely inconvenient and possibly embarrassing, or having a panproctocolectomy (the removal of the whole of the large bowel and rectum) and the creation of an ileostomy, the latter choice would be preferable because it would at least be manageable!
He said with relief that this was his ideal choice for me. It was always a balance between doing as much as necessary and as little as possible. It would naturally put an end to my colitis as I would no longer have a colon to be inflamed, and reduce greatly the likelihood of a recurrence of the cancer (although this could still recur in the form of secondaries in the lung or liver). With the partial resection, I would need frequent colonoscopies (at least once a year) whereas with the panproctocolectomy I’d obviously never need another one.
He said he was impressed with my grasp of the situation, and how informed and matter-of-fact I was about it. I suspect that the majority of his patients, faced with such a choice, would be freaking out all over the place and caught between the devil and the deep blue sea, and all he could do would be to present the different scenarios and try to guide the patient along the most beneficial course. I told them about my Cancer Diary on my blog, and they both thought this was a good idea; they were amused by my military visualisation.
I told them that when I was first diagnosed with colitis, my greatest fear was that I would “have to have a bag” and I couldn’t possibly deal with that… My hubby always said if it was necessary, he would help me with it, and he has been so supportive throughout. During the 18 months between my colitis diagnosis and that of cancer, I haven’t really thought much about it, apart from reading the experiences of friends online who have had to go down that route, and what they have said, especially Shaz (thanks dear friend!!) about how well they are coping, and how much less awful it is than they expected, I have become more educated about it, and it has ceased to the ogre of my imagination.
We went on to my long list of questions, some of which had obviously been answered by the above. He laughed when I kept the list close to my chest – “I see you don’t want me to see it!” I thought he might be alarmed at how many there were! First of all, I asked if it was possible for me to see a picture of my cancer, because it still all felt rather unreal – I had no lump, and no pain, and the only reason I knew I had it was through the words of other people. He brought up my colonoscopy images on the computer and I saw it for the first time. I could see how large it was, and how it was narrowing the lumen of the bowel, and that its appearance was quite different from the surrounding, normal tissue – it was dark and dirty looking, with an irregular surface, and I am not a bit surprised that, in Sally’s words immediately after the procedure, “We don’t like the look of it.” It now seems more real. He and Nita both said that it was very normal to have this “unreal” feeling.
I asked when the surgery would be scheduled. He said it would be on Friday 27th February, only 5 ½ weeks after it was diagnosed, which I think is very impressive. Of course, they don’t mess about with cancer, and the sooner it’s out, the better. This means that I have a fortnight to prepare myself, and to organise things at this end in readiness for my return home. He said I would probably be in for about a week, but it might be for a bit longer, given my extra medical problems. I would most likely spend the first 24 or 48 hours in the High Dependency Unit (HDU), one step down from the Intensive Care Unit (ICU) where they will monitor my lifesigns more intensively than on the regular ward, in view of the fact that I had a coronary artery spasm in the summer and also have left bundle branch block, and in view of my M.E. which reduces my general levels of fitness.
Before the operation I do not need to eat a special diet or take laxatives – this is a relief, because the pre-colonoscopy preparation is a total pain and I wouldn’t want to go through all that again quite so soon!!
Mr. Pullan told me that he is not a great advocate of keyhole surgery and my operation will be performed by open surgery. He said it was much better to get a good view of what was going on, and would enable him to remove the whole bowel much more easily, and also deal with any adhesions from my previous abdominal surgery. I asked if he would also be removing any lymph nodes, and he said that all the regional lymph nodes would be removed, along with the associated blood vessels which fan outwards to supply the bowel. The whole operation is likely to take up to four hours.
I asked whether the procedure would be affected by, or would affect, my M.E. He said that they would be aware of this, and the physiotherapist would make allowances for it, and slow down the rehabilitation accordingly. I would be on a special diet for a short time after the operation, to allow my system to recover, and to let the stoma settle down, but once I had recovered, it would be more normal. I expressed concern about whether I would still be able to enjoy the amount of fruit that I currently eat, and he said that shouldn’t pose any problems. The stoma nurses will advise me more on this subject later. Once the ileostomy was functioning, I would be able to resume my medications. My anaemia should correct itself after surgery so I should no longer need the iron, and of course the Pentasa for my colitis would be discontinued. Strange to think of that, because I had been told I’d be taking that particular medication for the rest of my life!
Regarding my convalescence, he didn’t think I’d need any particular help at home, but I would need to adjust my activity levels downwards, and avoid lifting etc. for a while, and I should not expect to feel normal for about three months. This is similar to my post-hysterectomy convalescence, but of course I would be factoring in the M.E. and expect my normal levels of fatigue, which could well be increased as a reaction to the trauma my body will have suffered.
I told them that I was on the 5:2 diet, and asked if I should discontinue this for a while. Nita said that it was important that my nutrient levels were optimal for good healing, and that I should stop it for now. She said that I would probably lose weight with the ileostomy. I asked (half in jest...) whether it was possible, while he was in there, for Mr. Pullan to scrape out some of my tummy fat! They laughed and said everybody asks that! – and the answer is NO!! Oh well. No short cuts to a flat stomach, then.
I have an appointment with my gastro-enterologist scheduled for mid-March, and because by that time I won’t have a bowel for him to be concerned about, that will be cancelled! Mr. Pullan said the hospital would sort that, and I wouldn’t have to do anything.
My post-op follow-up appointment will be about six weeks after I am discharged, but of course there will be stoma care appointments set up, the first being a week after discharge. I will be receiving a phone call about the bowel histology about a week after surgery (Nita said I would probably hear about it at my first stoma care appointment), and this will give me the information about the stage, and grade, of the cancer. From this information they will determine whether or not I require chemotherapy.
I asked about the likelihood of the cancer recurring, and he said they will set up a surveillance programme which will involve scans etc., which over time, all being well, will diminish in frequency. Although my CT scan revealed that the cancer had not spread, there is a risk that I may develop metastases in the liver or lungs as time passes, because if there was just one cancer cell in another organ which could not be picked up on the scan, there is a risk that it would grow into another tumour. If I do have chemo, this would presumably deal with that eventuality.
We talked about the ileostomy, and Nita produced a pack for me to take home – a lovely little pale blue zipped bag containing a short DVD about changing the bag, a book, and several sample bags. They apparently have a great system set up, whereby they do home delivery in an unmarked box and unmarked van (this made me laugh – I thought about them coming in a Tesco lorry!!). As well as bags, they supply skin treatments, and bags for disposal. If I feel uncomfortable about disposing of the bags in the dustbin, the council has a special medical waste collection service and provides yellow bags for this, and they are collected weekly, early in the morning (under cover of darkness? Lol!) There are different sorts of bags available but Mr. Pullan said most people stay with the sort of bag they find attached when they come round from their operation. They showed me how the bag is emptied, and how often people change them, etc., and how you can still shower and bath. Nita said they would put a mark on my belly where the stoma would be, and they would determine that from my sitting position, and any creases in my tummy etc. Each person’s is different and they want to get it in the right place for every individual. The stoma care team will advise more fully on this, of course.
I said to my hubby, “I bet when you married me, you never thought you were signing up to live with a bag lady!”
I shall take a leaf out of Shaz’s book and give it a name. Hers is called Sid. Nothing springs to mind as yet, but perhaps when I see the new-born stoma for the first time, a name will come to me!
So all in all, this morning’s appointment was very informative and fruitful. Despite the fact that this is turning out to be a lot worse than I thought, I now feel a lot better about things because, apart from knowing the exact nature of the cancer, which won’t be revealed until histological examination, I now know exactly what we are dealing with, and what to expect.
This is a very different scenario from that which I was led to expect at the beginning, when I was told that only a small section of bowel would be removed, and it was highly unlikely that I would end up with a stoma. I am glad that I have had three weeks to absorb what has been going on (is it really only 3 weeks? It feels like months!!) and to do my own research, and to hear what fellow-sufferers experience and how they deal with it. The result is that I went in to today’s consultation armed with a lot of knowledge, and was able to make my consultant’s job easier in the choices he has to make, and how he was to express these to me – not knowing me, he would not have known how I would react, and the fact that I made this easier for him, made it a lot easier for me too, as we moved forward together to make the right decision. It takes a bit of adjusting to, but I’ve got a whole fortnight to think about it, and already my mind is more at rest about the operation itself, and the amazing package of care that has been set up for my benefit – the well-oiled machinery of the MDT moving into action and planning ahead for every eventuality. I feel better because my hubby is in agreement and is so supportive; he knows that this will be for my eventual good, and give me the best possible chance of beating the cancer forever. I am so fortunate to have this amazing man at my side.
Monday 16th February 2015
Freaking Out a Bit Today...
After being so positive about everything on Thursday, I’ve had a very stressful weekend with Mum flatly refusing to go into respite care and I’ve had to just walk away and not get involved, but it was very distressing hearing her shouting at my poor hubby. As a result of all this, last night I had angina pains again and had to use my nitroglycerine spray. The anaesthetist told me to get the stress levels under control but easier said than done when the cause of it is just the other side of the door!!
I think because of this I have got very tired, and I’m not dealing so well with the idea of what is to come.
I have been doing quite a bit of research into life with a stoma which has been very helpful, though. I have been through the two books the nurse gave me on Thursday, and we have both now watched the DVD. I think it was the appearance of the stoma itself which freaked me out so much – the idea of having that red thing on my tummy squirting poo is almost more than I can bear the thought of at the moment, but they do say you can get used to anything! Some of the ones I saw on the Internet weren’t so bad, but the one on the DVD is very long and looks like a red willy lol lol!!! I must have a word with the surgeon and ask him please not to put a willy on my tummy.
I have signed up on a stoma forum and that has gone a long way to reassure me today – there is so much brilliant advice on there, and all sorts of hints and tips that people have come up with from their own experience, which the professionals may not know about. They are also an absolute riot and I’ve had the best laugh for ages – one person welcomed me and said with the “Gutless Bag Lady” attitude my battle was already won and I’ll be fine, and warned me that poo would now feature very large in my life. They are all sharing poo jokes and reverting to that happy childhood mentality when anything to do with the loo or bodily functions was hilarious!! I had already decided to name my stoma, following Shaz’s advice, and have found that a lot of people do this, and some of the names are very amusing. I can’t think of a suitable name yet but maybe I have to see this baby first, before a name springs to mind!
Before 27th February I am expecting at least two hospital appointments, but I have not yet heard anything. If I haven’t heard by tomorrow I shall phone Sally, the specialist colo-rectal nurse who is my contact for the MDT, and ask if they’ve got anything arranged yet, because we’ve got various pre-hospital treats lined up and need to fix them – people wanting to come over etc. and it’s hard not being able to give them any dates.
I am vacillating between feeling positive and knowing I’ll learn this new way of life with all the available support, and totally freaking out and thinking I won’t cope, that it will all be too disgusting, that I will become agoraphobic because I’ll get too scared to leave the house in case something embarrassing happens... I am sure these are natural fears experienced by many but it’s not helping. The operation itself makes me feel scared, even though I know the post-operative pain management is so much better than before, and I don’t relish coming round with all those tubes going in and out of me – more even than I had with my hysterectomy. Wondering too how I will cope with major surgery as an M.E. sufferer... I am also worried about when I come home and won't be able to do anything for quite a while, and hate the idea of being out of control of my life and having others to do the things I usually do – I am so grateful for the offers of help we’ve had already but I’d prefer not to need any help at all! Also I am worried about getting emotional and depressed afterwards (every time I've ever been in hospital I’ve come out as a soggy emotional weepy heap and it’s a horrible feeling), and through all that turmoil, having to cope with the bag. I think my greatest fear is feeling out of control of my own life. I really am trying not to get ahead of myself and worry too much but it’s not easy.
I realise that over the past couple of days I’ve hardly thought about the cancer at all. It’s sitting there silently and unobtrusively and if I hadn’t been told about it, or seen it on Mr. Pullan's computer screen, I wouldn’t even know it was there. I have been far more concerned about the operation, and what the ileostomy is going to mean and how it will affect the rest of my life.
Today I’m not sure which is worse – the awful uncertainty before I knew whether or not the cancer had spread, and then not knowing what the surgeon would say – and knowing what is going to happen and dreading facing it. I wish it was all over and I was already a pro with the bag, but there’s a lot to get through before that.
Wednesday 18th February 2015
A Bad Day Yesterday and Today
I was feeling a bit better again about things this morning, but yesterday was a bad day and it got worse as the day progressed. I think it was partly because I was very tired, and my threshold for coping was lowered.
In the evening after my hubby had gone to bed I had a bad time and felt quite panicky and tearful about the whole idea of the surgery and especially of the stoma, and felt myself rejecting the whole idea utterly, and finding it beyond my capability to deal with it. This is not an option, of course, because if I don’t have it done, the cancer will spread and I will die. This has to be a better alternative than that!
I knew from the outset that this would be an emotional rollercoaster. I never know from one day to the next how I am going to feel, and the untethered feeling is still very much in evidence – I had hoped when I heard the scan results and seen the surgeon that this would disappear and I’d be back to my normal self again. This has taught me not to predict anything, but just to take each day as it comes, and deal with each emotion as it comes, too. I am sure this is all very natural, and I won’t be the first person to be sh*t scared in the face of the coming ordeal.
I had a letter from the hospital yesterday calling me in for another pre-op assessment appointment, which will be tomorrow. I was a bit confused about this because it looked very similar to the letter calling me in for the anaesthetist’s appointment a fortnight ago – is it really that long ago? It seems like yesterday, but on the other hand it feels like months ago! Time is doing such weird things in my mind at the moment... I wondered if they had made a mistake. I thought I would have at least two appointments before being admitted, and neither were what this one purported to be.
I phoned the hospital to check it out, and they explained that this was the appointment with the nursing staff. The appointments I was expecting were one with the High Dependency Unit nurse, explaining what I would experience in the immediate post-operative period before I was transferred to the ward, and another with the stoma nurse. They said that everything would be done in the one appointment, which saves a bit of coming and going. They told me I would be seeing the stoma nurse, and also the Enhanced Recovery nurse.
I have been left feeling a bit confused about this, because Mr. Pullan, the surgeon, explained to me that I would spend the first one or two days in the High Dependency Unit, and then several days on the ward so that they could make sure I reached all their targets before being discharged. Enhanced Recovery is a fast-track system whereby the patient is shunted through in double-quick time after surgery with minimal intervention, with discharge being after about four days. Mr. Pullan said I would be in about a week or possibly more, and nothing was said about Enhanced Recovery. This normally takes place more with laparoscopic (keyhole) surgery than open surgery, which I am having, and I should have thought I would need a bit more time than four days to make sure that the stoma is functioning properly, and to learn how to manage it.
We are still dealing with the problem of Mum refusing respite care, and the doctor came to see her today and missed the point completely, saying he could see no medical need for her to go into residential care, when in fact it is my medical needs that are in question, and that respite care is for the carers, not the carees... The situation is therefore now worse than before, because without his backing, I can’t see us getting any helpful intervention from Social Services or any other agency who might be called upon to get her to see how necessary this is.
After yesterday, feeling so wobbly about the whole surgery and ileostomy business in general, and really struggling emotionally, this is the last straw, and I feel quite desperate, as if everything is spiralling downwards and I have no control over any of it.
I will tell them at the consultation tomorrow, but I can’t see what they can do about it. How can a little old lady of 93 wield so much power and cause so much upset?
Thursday 19th February 2015
Today is exactly a month from the day I was told I had cancer, immediately after my colonoscopy. Time is doing the weirdest things at the moment, warping in and out, expanding and contracting. One minute it feels as if it was yesterday that this all started, and I’ve scarcely had time to draw breath and assimilate what is happening to me, and at other times, I seem to have been waiting for ages for each appointment or result to come in, and it feels like a year. I am totally out of touch with what day of the week or date it is, and have to keep looking it up.
Today was the final appointment before my admission. It was the pre-assessment appointment with the specialist nurse, and dealt with my admission, the surgery, what to expect, the preparations for surgery, and to answer any questions. I had hoped the appointment would include the stoma nurse but this didn’t happen, unfortunately. I had a lot of questions for her, but I will be able to ask them when I see her on the day of my admission, when they will decide the exact location of the stoma.
When we arrived, I was weighed and measured, and then taken into a room where the nurse took my blood pressure, performed an ECG, took blood, and swabbed me in various parts of my anatomy for MRSA (if the result is positive, they will send me special washes to use before I am admitted, but if negative, I won’t hear anything). We were then sent back to the waiting room.
Then the specialist Enhanced Recovery nurse took us to another room. I was concerned about Enhanced Recovery After Surgery (ERAS) – I had looked this up on the Internet and found that it is a fast-track procedure with minimal intervention, to aid more rapid recovery from surgery. I got the impression that sometimes this might be done with undue haste, and I read some pretty negative feedback from people who had experienced it, and read about people being discharged after 4 days, and I definitely don’t think that should apply to me as I am sure I won’t feel ready after so short a time. Also, Mr. Pullan did not mention this, and said that I would spend the first day, or possibly two days, in the High Dependency Unit (one step down from Intensive Care) to make sure everything was stable before being sent to the ward, and I would probably be in for about a week, or possibly more.
I questioned this, and she said ERAS is a very broad concept, and now more or less universally employed in most hospitals. She said it involved modern post-operative pain relief which has been proved to promote more rapid recovery; the administration of nutrient drinks before admission to strengthen the patient in preparation for surgery, and other techniques. She said it definitely wasn’t a ploy to shunt people through more quickly in order to free up beds and shorten waiting lists. She said I definitely wouldn’t be discharged before I was ready, and that every individual is different, with differing needs, and different rates of recovery. I was reassured by this.
She began by making a note of my medical history, any previous operations I had had, allergies (none), smoking and drinking habits (none), whether I had had any recent falls (no), breathlessness on exertion (some, but due to general unfitness through the M.E.), etc. etc.
She explained the various things I would find attached to my body when I came round from the anaesthetic. These would consist of an intravenous line for the administration of nutrients and drugs, and arterial catheter for continuous monitoring of blood pressure and blood gases (this would be removed when I left the High Dependency Unit), wound drain(s), urethral catheter, line(s) running behind the abdominal wall and epidural line for the administration of local analgesia, and a syringe driver for top-up opioid analgesia, which they like to keep to a minimum because it can make one feel quite poorly. We talked again about post-operative pain management, and the continuing pain relief available after I come home, which would consist of codeine, ibuprofen and paracetamol-based medications in tablet form. She confirmed what I had already discovered online, that Dr. Magides, the anaesthetist, is the hospital’s expert in pain management, so I shall be in good hands!
She gave me quite a large book all about admission for surgery; what to do, and what to expect. I have skimmed through this but will need to spend more time on it. I was also given a bag of bottles of nutrient drinks to boost me in readiness for surgery.
I am to turn up on Friday 27th at 7 a.m.! For goodness sake, that’s the middle of the night!! I’ve got to set my alarm for 6 a.m. and take my final nutrient drink at that time. Since I often don’t go to bed till 3 a.m. it scarcely seems worth going to bed at all... Mr. Pullan and Nita, at my appointment last week, agreed with us in our decision to leave the wheelchair at home, and to bring my crutches into hospital, but the nurse today said that it would be best if my hubby took them home until after the operation; when they first got me up, I’d be on a frame, which would be more stable, especially as I’d be attached to various drips etc.
We spoke a bit about the location and size of the stoma, and I said I didn’t want a red willy sticking out of my tummy like on the DVD! She indicated approximately how long it would be, and said it might seem large at the beginning, but it would shrink with time; there is always inflammation after an operation. We discussed the location of the incision, which will run vertically from just above my belly button, taking a little detour round it, and then down to the pubic line. She reassured me that the stoma would not be too near this incision, to avoid the problems of sticking the bag onto an uneven area of skin, causing leaks. I told her I was on the 5:2 diet, and when I asked whether any further weight loss would cause problems, she said the only thing might be more wrinkles in the skin if I do eventually manage to shrink my belly further, but they would put the stoma on an area where that would be less likely to happen anyway.
I was told there would be dissolving stitches in the main operation wound, and possibly some glue on the surface skin. Where the further end of the rectum is removed, a short distance above the anus, it will be stapled, and these staples will remain in place permanently, and won’t cause me any problems.
She mentioned the need for physiotherapy, and we talked about the limitations imposed upon me by my M.E. I said that the main areas of concern to me were rapid muscle fatigability, general fatigue and lack of stamina, poor mobility and poor balance. She said they were all accustomed to dealing with M.E. patients, and others with different pre-existing medical conditions, and would tailor any physiotherapy around my particular limitations. She said that I was coming in with the sort of problems someone might have after surgery – and with a lower baseline, the results of major surgery would be more severe than with a person in a normal state of health – major surgery causes fatigue, for example, and if I already suffer from this, then it will be that much worse.
She also mentioned that one’s emotions are affected by all this, and I should expect to be weepy and “blue.” I said I’d experienced this with my hysterectomy and knew what to expect.
She said they usually like to get you up and sitting in the chair, but I explained that a lot of my time at home is sitting on the recliner, with my back in a more seated than lying position, but with my legs up because this was a lot more comfortable for me. When I was in hospital after my heart attack, I spent all the time in bed. The beds are adjustable so that I could sit up, but have my legs up too, and she said that they would probably give me some gentle leg exercises to do, such as wriggling my ankles and keeping moving as much as possible, to prevent the formation of DVTs (deep vein thromboses). She asked what my bed was like at home, and we explained that we had recently got an adjustable bed for me, and this, along with its bed lever, will make it easy for me to get in and out of bed – I find this very helpful with my reduced mobility due to the M.E.
She said they may get the occupational therapist in to see if I need any extra help in the form of appliances etc., but I said the house was pretty well equipped for my existing needs, and she made a note of the fact that we have a stairlift. She asked if we had a wet room and I said yes; we’d had a lot of adaptations done when we moved.
That really covered most of my general questions, and the list of stoma questions can wait till I see Nita, the stoma nurse, when I am admitted. I also had quite a lot of diet questions, but she said they would give me a diet sheet, and would be able to answer my questions before I was discharged.
Regarding my diet in hospital, she said they try and get you eating and drinking as soon as possible. For the first couple of days I will have an intravenous drip, and then very quickly they will introduce nourishing fluids, and then small quantities of solid food. She said I may get indigestion and feelings of nausea to start with, and if this is the case, I must tell the staff straight away, and they can deal with it by giving me something via my intravenous line.
I will be catheterised when I come round from the anaesthetic, and with the intravenous drip,they will be able to monitor monitor my fluid intake and output for a few days. She said the stoma would probably start working very quickly, producing quite a lot of very liquid output, but this will settle down. They will obviously be monitoring all this quite closely. The stoma bags they use in the hospital are transparent, so they can examine the stoma without removing the bag, but when I go home, I will have opaque ones.
She told me to bring in all my medications. The Pentasa, which I have been taking for my ulcerative colitis, I obviously won’t be continuing with, but she said I could still bring it in if I wanted the hospital to recycle it, to save us taking it in to the pharmacy. It seems so weird that I will no longer be taking these strange granules twice a day – Dr. Johnston, my gastroenterologist, said I’d have to take it for the rest of my life! After only 18 months to be stopping it, seems strange indeed.
Talking of Dr. Johnston, I have written to him, saying that since I soon won’t have a colon for him to be interested in, I will no longer be attending his outpatient clinic, and thanking him for all he has done for me over the past 18 months – he has improved my quality of life greatly, and given me peace of mind. I said I would miss coming to see him, as I always enjoyed my appointments with him, and appreciated his sense of humour! (I wrote this in one of my Zentangle cards.)
Emotionally, the appointment was very hard. I was in floods of tears for much of the time. Firstly it was the general freaking out at the whole operation and stoma, recovering in hospital and then the whole unknown of the new normal at home, and secondly it was the extreme distress over Mum refusing to go into respite care.
The nurse said that they really couldn’t do anything about that; the only person who might have any say is Mr. Pullan, but she said she was sure he would not involve himself without seeing Mum himself, which he clearly can’t do. She said it was definitely a job for the GPs. I told her what had happened yesterday, and that I felt utterly let down, and she said I should tell them that at the surgery. She suggested we contact another GP from the surgery to get them to come up and see Mum, having a good talk with us first, and letting them see how distressed this is making me, and how I need them to back us up in our decision to move Mum into a home for as long as it takes for me to be well under way with my convalescence. When we got home my hubby phoned the surgery, and my own GP is going to phone on Monday, and hopefully will agree to come up. He told them it was a serious matter and I was in a state of high distress about it.
The nurse went on to say that it was important for my hubby, too, because if he was already tired (which he is), he would be utterly exhausted after I came home, and he must look after his own health too, if he wasn’t to collapse through it all. We really need this move to happen, and to get Mum out of the house for the duration. Her attitude is beyond belief, flatly refusing to go – her daughter has got CANCER for crying out loud, and is about to undergo major surgery, and is already in a highly emotional and fragile state, and all she can think about is what she wants, and her perceived needs. She said to my hubby that she was “far too old and too frail” to go into a home!! It’s people who are old and frail who need to go into homes!! She is actually as tough as old boots and everybody (carers, doctor, district nurses etc.) all say how robust she is, and how good she is for her age – she certainly doesn’t need to be in a home for her own health requirements, but to be in residential respite care for the good of her daughter and son-in-law is definitely necessary! Somehow we have got to get this sorted because the situation is quite impossible. It’s doing my head in at a time when I should be in a quiet and peaceful frame of mind in order to prepare for the ordeal to come.
Wednesday 25th February 2015
Only two days to go now, before my operation. Somehow it seems extremely imminent when you can say “The day after tomorrow...” - much more so than “the day after the day after tomorrow.” I vacillate between being too busy to think about it at all, and being sh*t scared about the whole thing (esp. during the night...)
After putting up with a couple of weeks of extreme resistance from Mum to the idea of going into respite care, and none of our tactics working, including a long letter from me, written from the heart and literally begging her to do this one thing to help us, on Sunday night we came to the conclusion that we just had to get on with it, organise everything and present her with a fait accompli. We did this on Monday, finding a beautiful room with an outstanding sea view in a large modern home (not our first choice which would have suited her better as it was an old house with fewer residents and a very friendly family atmosphere, but no available beds, and given the shortness of time to deal with everything, we had to act quickly). We cancelled the carers and called in at the GPs’ surgery to let them know where she’d be for the time being, and where the district nurses should go, and then my hubby went in and told her. Minimal shouting this time – and after a fortnight of hearing her constantly shouting at him and berating him (so unfair after all he has done for her), she has accepted the inevitable and realised this is a battle she simply can’t win.
This morning, the last carer to come until Mum returns home, came out and spoke to me and said, “Your mum said, ‘She’s putting me in a home, and I don’t want to go.’” The carer reminded her of the seriousness of what we are facing, and that she would have nobody looking after her, and what if something happened to her while nobody was around? She said, “Your daughter would never forgive herself.” Nice tactic. The response? “I can’t hear!” (A prime example of selective deafness!). She repeated it, and there was no reply – only tight-lipped silence. I am waaay beyond guilt over this and feel nothing in response to this, and after all, if she is feeling unhappy and hard-done-by by all this, that is HER choice, not ours.
We had been hoping for a fortnight of peace and quiet, with her already in respite care, so that we could rest and prepare for the coming ordeal, and have plenty of time for what my hubby calls “spoilies.” As it is, we’ve both been so stressed out, and busy trying to get Mum to see sense, that this plan has flown out the window, although we’ve had a few spoilies.
Yesterday afternoon, for instance, he took me to Marks and Spencer’s to get some new things. It’s ridiculous how stress can make you get the silliest things out of proportion, and the night before last here was Shoshi losing sleep over a dressing gown, of all things!! On the info the hospital gave me the other day about what to bring in, they said “a warm dressing gown because hospital corridors can be quite cold.” I folded up my big winter dressing gown and it half filled my bag, leaving little room for anything else, so I took it out, and thought I’d probably be much too hot in hospital, despite what they said! I can’t think that I’ll be spending much time in the corridors anyway. Then began a search for my lightweight summer one, with no success. I think I may have put it in a charity shop when we moved, because I mostly wear kaftans these days, so that if anyone calls and I’m not yet dressed, nobody can tell I’ve still got my nightie on underneath lol! However, I thought a kaftan might be difficult to manage in hospital, and something that opened down the front would be a lot easier. I went to bed worrying about it and wondering whether I’d still got the summer dressing gown or not, and where on earth it could be... In the morning I told my hubby, and he said, “For goodness sake, why not just buy a new one?” Duh. Why didn’t I think of that???
So in the afternoon he took me off and we found a very nice medium-weight one. They had them with zips (not convenient, as you have to bend down to engage the bottom of the zip) and buttons (too much fiddle) so I chose this one that just has a generous cross-over and a tie, all in a nice soft, non-slippery fabric so it will stay closed. I also decided to get a few more nighties as it will be nice to stay fresh while in hospital, and new things always give one a boost too.
Then came the funny part, about the bras – I hardly ever get out to the shops and said while we were there, I might as well get some new ones because mine are practically in rags now! I chose a couple in the size of my old ones, and took my hubby along to the changing rooms and they allowed him to come into the large disabled cubicle with me, just so long as he pressed the buzzer before coming out so the assistants could check there were no ladies around in a state of undress!! I discovered to my horror that these bras wouldn’t even go round me, let alone do up – my old ones have stretched so much that the size on the label is a total lie lol lol!! He rang the buzzer and the lovely lady brought a succession of different ones and recommended what was best... They are all huuuuge and despite my having lost 2 1/2 stone since the summer, there's something about the mirrors in fitting rooms that make one look larger than ever... I said to my hubby that things have come to a pretty pass when one’s bra has to have THREE hooks on the back, and it took me back to my childhood in the 50s when Mum used to wear “ladies’ foundation garments” – he laughed and said it sounded like concrete blocks!!!
Anyway, eventually I was recommended to buy these huge things that looked like the scoop thing on the front of a digger, and she suggested not getting ones with under-wires in case they irritated my operation scar – not something I’d given a moment’s thought to. My hubby said the whole experience was an eye-opener lol! He was very useful, though, for passing me things!
Have I any pride left? Not a lot!
After this I packed him off so he wouldn’t get bored while I continued with some retail therapy, agreeing to meet later, and I treated myself to some simply gorgeous spring things is soft subtle colours of pale jade and coral – a beautiful silky “boho” top in mixed colours, a coral jumper in a cotton yarn, and a jade shawl collared cardigan, all in their “Indigo” range. I did spend a bit more than I’d anticipated, especially as I only went in for a dressing gown and a couple of nighties, but there you are, we all need spoiling once in a while and I haven’t had any new clothes for ages.
In the evening he went out and got us a delicious Indian takeaway with my favourite Pashwari naan, and tonight we are going for a Chinese meal. I am pigging out on all my favourite foods, because who knows how long it will be before I can eat normally again, and I know certain foods will probably be forever forbidden to me.
Tomorrow morning my hubby is taking me to the hairdresser’s and I'm having all the straggliness trimmed away and the layers redone – unfortunately no time to organise a perm (it’s grown out quite a lot) but I am having some funky coloured streaks put in – purple, orange, etc. This will give me a great lift, and set me up for a bit. There’s no point leaving it till after the operation because I won’t be fit to go for ages, and anyway after major surgery one’s hair is simply frightful – lank and lifeless – and many hairdressing products simply won’t “take” – your hair suffers as your body’s energies are directed towards healing the wounded parts. So, I shall probably shock Mr. Pullan with this vision of loveliness and no doubt he will be very glad when it’s all covered up with a becoming hospital paper shower cap!
This morning my hubby was out having a physiotherapy appointment for his broken wrist – the bone is knit, but there’s still soft tissue damage that’s going to take a long time to heal, and he’s still got pain and some reduction in movement. He was all for cancelling this appointment, in view of everything else that’s going on, with Mum and me, but I absolutely put my foot down at that, and said that on no account was he to neglect his own health, when it was essential for him to remain as strong and healthy as possible.
He is extremely tired, and everyone is remarking on it, that they can see it in his face. He has been saying that once Mum is in the home, he will visit her every day, but we are all saying that he should not do this, for a number of reasons; firstly, it will prevent her from settling in quickly – his presence will be a constant reminder of the fact she’s had to leave home, and secondly, he needs to “lay her down” emotionally and physically, so that he can concentrate on me for the time being. I have told him that while I am in hospital and he’s not visiting me (they are very strict about visiting hours), he should stay home with the kitties and have a good rest, and only go out to do things that he enjoys, just for himself. He has been consistently waking at 5 a.m. and being unable to get off to sleep again with all the worry over Mum, and his quite natural worry for me, and he needs a break, and the opportunity to recover a bit before I come home and need a lot of care and attention. I do hope he takes this advice. The trouble is, unlike me, he is still consumed with guilt over Mum – I am way beyond that after her appalling attitude over respite care – he could not have done more, and has nothing to reproach himself with. By putting her in the home, he is keeping her safe and free from risk, in a safe and beautiful environment, and if she chooses to hate it, that’s her affair, not his. He is looking after our interests – caring for his wife as his No. 1 priority, and at the same time, taking care of himself.
When we got back from our day out yesterday, we found a message from the hospital, and I phoned them this morning to fix an appointment tomorrow afternoon with Nita, the stoma nurse. This was originally going to be before my surgery on Friday, but the nurse who saw us the other day said it was better done the day before, when there would be more time for me to ask my questions. They will mark the site of the stoma with a permanent marker. I am going at 2 p.m. tomorrow.
More news tomorrow.
Thursday 26th February 2015
The Big Black Blob
I cannot believe it – I am going in TOMORROW for my surgery... Time has leapt ahead and it is now upon us.
This afternoon I had my appointment with Nita, the stoma nurse. Despite my best efforts, I again dissolved into tears several times, but she was so supportive and lovely, and said they were all there to help me through this.
She was able to answer all the questions on my list, and reassured me that everything I need – bags and all ancillary equipment necessary to live life with a stoma – would be provided, and they would teach me every step of the way, and be there for continuing support and advice in the future. She said they would tell me the same thing time and again until they knew I had really assimilated it, and said it didn’t matter to them one bit that they may have a harder job of that with me because of my M.E. and the brainfog that makes it hard to assimilate and process information.
She showed us a lot of bags, and said they had so many different sorts that it would overwhelm me if she showed me them all! To start with, she said, they introduced patients to a small selection to try, to avoid confusion. Everything is supplied free, on prescription from the GP. Some people opt to do this through their local pharmacy, but she said the vast majority do it through a local supplier. This way, you not only get the bags, but also all the other equipment you need – dry wipes, adhesive remover, preparations to keep the skin healthy etc. Also, once the stoma has shrunk down to its permanent size after the post-op inflammation has gone down, the bags will be supplied with the opening already cut to your exact size. They even provide a nice bag to keep everything in, that you can take with you when out and about.
She said that initially, after the operation, they will take care of the stoma and bag for you, and after a day or two, most people start to want to do this for themselves, and they are guided through, every step of the way, until they gain confidence. They would not discharge me until they were confident that I could manage this independently.
To start me off after discharge, they will send me home with a limited supply of bags, with various different ones to try, to last for a week to ten days, after which I will have a follow-up appointment at the stoma clinic, where they will see how I am getting on, and advise re bags. They know from experience which bags suit which people.
We talked about the nature of the stoma itself. A colostomy tends to be wider and flatter than an ileostomy, which protrudes more; I expressed severe doubts about this, as the one on the DVD they gave me was absolutely gross and looked like a red willy sticking out of the young lady’s tummy, and I said I did NOT want one like that! She said they had to be more prominent than a colostomy because the output is more liquid, and they have to ensure that it goes into the bag, and not seep underneath the flange which is stuck to one’s tummy, as this can cause severe skin irritation. (Sorry if this is TMI, folks, but I think it helps to be graphic, and honest, for anyone about to go through this, so they know what they are facing.)
Eventually she had a look at my tummy when I was first in a sitting position, and then lying down. We discussed what position I would be in when changing the bag, and in my case this would be sitting on my perching stool in the bathroom. She made a couple of small marks on my tummy and the first one, I am ashamed to say, was invisible to me from above because my tummy is so huge!!! She made one a bit higher, and we decided this was the best site for the stoma.
She then took a large permanent black marker and drew a great black blob on my tummy! This will survive tomorrow morning’s shower, and show Mr. Pullan where to create the stoma. It is on the right hand side of my tummy, pretty well level with my tummy button. I was worried that the bags would be too long and get caught up with the top of my leg when I sit down (I spend most of the time seated) and she said there were lots of different sized bags available, and they would find something to suit.
I then expressed my concerns about making allowances for my M.E. once I was on the ward – a lot of emphasis is made of walking about a lot, sitting up in the chair, eating in the dining area at the table, etc. These things will be hard for me, and I cannot sit on a dining chair and would require my wheelchair, which I have been advised that I will not need on the ward, and it will get in the way – also my crutches – I have been told that I will use a frame initially, and anyway the physio dept. on the ward has a full complement of mobility aids. My hubby chipped in that they deal with patients who have had strokes, or who are disabled in many different ways, who happen to need bowel surgery, so they will be well able to tailor the physiotherapy requirements to suit the individual and their particular limitations. I said I didn’t want to be constantly chivvied to get out of bed, or to do things I knew would be beyond my capabilities or cause me problems with payback – I have had this illness for 8 1/2 years and know my body and my limitations, and they do not. She said I was not to worry; people do listen these days, and it’s not like the bad old days when they ordered you about and didn’t allow you to take charge of the decision making processes for your individual care. I am reassured somewhat, but still slightly anxious because I’ve already got this extra burden to deal with.
As we were coming to the end, she went out to see if Mr. Pullan’s operating list had been finalised for tomorrow. Apparently there was one small case, and two large ones (one being mine); the list is not yet finalised, but she said we could turn up at 8 a.m. instead of 7 a.m. which helps a bit.
The admission process was outlined in the literature given to me by Jane, the specialist nurse who did my pre-assessment appointment. I will detail it here, because after the event, I won’t be in any position to write diary entries or even access my laptop.
On arrival, we check in at Surgical Admissions and are ushered into a large waiting room, with magazines and a TV. My hubby can sit with me here. During the waiting time, I will be taken in to see a nurse, who will take my details, and then measure my legs for the elastic stockings they issue you with, for the prevention of DVTs (deep vein thromboses). I will also be called in to the anaesthetist and may be given some medication at this stage. I will need to see the surgeon, who will mark the operation incision on my abdomen, and there will also be another opportunity to see the stoma nurse.
Half an hour before my operation, I will be taken to a private room and asked to undress and put on a gown. My clothes and other belongings will be bagged and tagged, and sent to the ward (not sure if this will be the High Dependency Unit, or whether it will go straight to Allerton Ward, Torbay Hospital’s gut ward, where I will be spending the majority of my stay in hospital).
I will then go to the pre-op room. Patients are supposed to walk there, and I am not sure at which point I shall have to relinquish my wheelchair. I expressed concern at the idea of having to sit waiting on a hard chair and requested I keep the wheelchair as long as possible, and when I eventually have to leave it, I asked that someone would take it back to the large waiting room where my hubby will remain to collect it, and take it home.
From the pre-op room, patients are supposed to walk to the anaesthetic room – Nita, the stoma nurse, said today that they may put me on a trolley at this point, rather than later, if my wheelchair has gone. Anyway, in the anaesthetic room, the trolley is the next thing, and I may be asked to remove my glasses (not sure what happens to them!), and I will then be attached to monitoring equipment, and taken in to theatre.
I apologised that I was making such a meal of the details, but I have noticed since this all began that I am liable to lose sleep over trivia – I think it’s all part of the overwhelming sense that my life is no longer under my control, and I am feeling very vulnerable and afraid, and I need constant reassurance not only that the details will be taken care of, but that I will be fully informed of what is going on at every stage. (OK, in technical jargon: I am a control freak lol!)
After this whole process, all will be blank (hopefully!) until I come round after an operation lasting approximately 4 1/2 hours. I will remain in the recovery room until deemed fit to be transferred to the High Dependency unit for one, or possibly two, days, after which I will be sent to the ward. The High Dependency Unit is one step down from Intensive Care, which has a nurse-patient ratio of 1:1; slightly fewer nurses per patient in the HDU but close monitoring all the same.
During the operation, I will have various lines attached to my body: an IV line for fluids and nutrients; wound drain(s); epidural; possibly a couple of lines supplying local analgesia behind the abdominal wall; urethral catheter, and an arterial catheter to remain in my wrist for the duration of my stay in the HDU for continuous monitoring of blood pressure and blood gases, to be removed on my transfer to the ward.
Looking at this whole process from street to theatre, reminds me of a traveller’s progress through an airport! You arrive and wait in a large lounge, in the company of your relatives who have come to see you off, and are issued with your boarding pass, have your baggage checked, etc. After this process, you leave your relatives behind and go to the departure lounge, where you wait for your flight to be called. You go to your designated departure gate and board the plane, and after an indeterminate (interminable?) wait, you are told to fasten your seat belt and prepare for take-off, and remain airborne until you reach your destination. The only flaw in this particular visualisation is the lack of Duty Free!! Lol!
See you on the other side, folks. Time to pack up the computer and put it ready for my hubby to bring in when I’m up to it.
P.S. This morning I had a lovely “spoily” – I had my hair done. I had quite a bit cut off and it was re-layered, and I have had three wonderful funky colours put in – a rich copper at the top, purple underneath, and blue at the ends! This has given me a real boost, and it reflects my creative and artistic nature! Watch this space, or my regular blog, for photos!
Saturday 28th February 2015
Flight Delayed Owing to Fog
I think my hubby has managed to contact most people with our latest news, but in case there’s anybody out there not on my regular blogs or forums and who is surprised to see Shoshi back on her computer again so soon, read on for the reason why...
Yesterday we were both up at the crack of dawn and getting ourselves over to the hospital ready for my admission for surgery. Everything was as I described it in my previous update, apart from the fact that the large waiting room with magazines and TV was replaced by a draughty corridor... We went through the admissions process, seeing the anaesthetist who described again what I could expect, and the surgeon, Mr. Pullan, and his registrar, who talked me through the procedure again, and the nurse, who measured me for the anti-DVT stockings, finalised my details, put on my wrist band and labelled my bag, and got me to sign the consent form. I asked about my wheelchair, and she said that for the last bit, I could use a hospital wheelchair – I said that was OK as long as it wasn’t for too long, as sitting in a regular NHS wheelchair gives me severe backache after a while; she said it would be about 10 mins, which is fine. She also gave me a plastic bag to put my glasses in when I go down to theatre on the trolley, and I could probably keep my bra on. She was a bit doubtful about pants, but said they provide paper ones, so I said I’d wear those instead of my own. She told us that the operating list had been finalised, and I was second on the list, after Mr. Pullan’s first case which would be about three hours’ duration. There would therefore be time for us to leave the hospital for a while and do what we liked, as long as nothing other than water passed my lips, so we proceeded to leave.
We were waiting for the lift to arrive when Mr. Pullan reappeared, and said, “Thank goodness I caught you in time...” and led us back into the consulting room, where he informed us that the operation would have to be postponed until another day! I couldn’t believe what I was hearing... We had come so far, and the next stage would be for me to leave for the departure lounge with my ticket and be taken down to plane. He said that a problem had arisen at the last minute, and that a High Dependency bed was no longer available for me. He said he was not prepared to proceed with the operation without this safety net, given my other medical problems. He said that in a situation like this, everybody is a loser – he said he understood how devastating this news must be to us, and also that he now had to waste a 4-hour operating slot, which could not be filled at such short notice.
He said that he would move heaven and earth to give me the next earliest slot available, but could not at that moment say when that might be; he was in his surgical scrubs and away from his office and his diary, but that we would hear at the earliest possible opportunity. We would be given a couple of days’ notice, so that we could go through the process of the energy drinks etc. again. He said he was very conscious of the cancer which needs to be dealt with expeditiously, and that he would do all he could to brook no delay.
We were then free to leave. We were making our way down to the canteen for a much needed cup of tea when we passed the chaplaincy office, and the door opened to issue forth about 5 vicars! The hospital chaplain Sue, whom my hubby knows well, was there, on the spot, to offer sympathy, comfort and tissues – I was in a terrible state. She also asked for our prayers for her, as she was having to deal with two families that day who had lost babies... I was able to catch a glimpse of the fact that other people had far worse problems than mine, which did ameliorate my suffering just a little...
Over the past weeks, I have been on an emotional rollercoaster – one minute up, to the point of hyper, and the next down, feeling vulnerable, tearful and afraid. This latest shock was enough almost to tip me off the merry-go-round altogether and I was a total heap, and I’m afraid that for much of the day I wasn’t very nice to my hubby... I later apologised, and said that a few weeks ago, I did apologise in advance for any unwarranted outbursts, and asked him to try to make allowances as much as possible for my emotional instability. It’s not only me who has been feeling all over the place, after all – he is quite exhausted and has been very worried about me, and having to deal with Mum as well. He’s carrying a lot, and I do feel bad about having been unreasonable and unpleasant with him.
I am feeling absolutely wiped out physically; this whole episode, on top of all the other stress of recent weeks, is taking a toll on my M.E. Mr. Pullan did ask me yesterday (before the news of the postponement) whether all the stress leading up to surgery has affected my M.E., and I told him that it hadn’t really – probably as a result of all the extra adrenalin coursing through my body! This final event has certainly knocked the stuffing out of me, and I am feeling physically exhausted now.
We came home and I went straight to bed, and slept right through till tea time. When I was awake I was still very tearful and emotional. My dear hubby got on the phone and contacted as many people as possible about the change of plan, and hopefully the news will be filtering through OK now. I was quite unable to speak to anyone on the phone.
I had as good a night as I ever do, and this morning, I must say I am feeling quite a bit more grounded, and more myself; my emotions are much more under control, and I am even beginning to believe that what has happened may be a blessing in disguise. Our original hope was that we would get Mum into respite care a good fortnight before I was due to be admitted to hospital, to allow me time to calm down, and enjoy a stress-free environment at home in order to rest and prepare myself for the ordeal to come, but in the event this did not happen, and we only got Mum into the home a couple of days previously.
Now, though, it appears as if Plan A may be happening after all, although I do hope it won’t be a fortnight before I go in. We are now living at home without Mum in the flat, and the place feels entirely different; my hubby has relieved me of all my duties and is allowing me to rest completely, and has been contacting everybody on my behalf. I am reminding myself of the following verse, with which I began this diary:
Romans 8:28: And we know that all things work together for good to those who love God, to those who are the called according to His purpose.
And now, the news about Mum. My sister came over on Wednesday, to help us move Mum to the home. When she arrived, we both went in and started to sort her things to take; she had already packed, it seemed, and had only packed a small suitcase with enough for about a week! My hubby provided her with a larger case, and together we started repacking. While we were doing this, she called through to my sister, saying she wanted to talk to her, and would she please shut the door because she didn’t want her to hear (i.e. me)! Even with the door shut I could hear every word, and it was just more of the same – she didn’t want to go, my hubby and I were so cruel, didn’t her wants deserve consideration, etc. etc. My sister backed us up 100% and said that arguing about it wasn’t going to do any good – she was going, and that was that.
When she was leaving, she said she couldn’t understand how she had upset me so much. I said I’d explained the reason in the letter. She said “I didn't like that letter.” (She wasn't meant to like it...) My hubby later told me that when he’d mentioned the letter to her, she had said, “That letter was absolute tosh.” In its short life between being read and later torn into shreds and thrown away, it served a useful purpose as a coaster for her coffee mug.
My hubby and my sister took Mum to the home; I didn’t go, as there was little point. When she arrived, she was welcomed very sweetly by the owner, and she stormed past her without a word. Once in the room, she said it was a “prison” and started marching up and down with her walker, like a caged tiger at the zoo. When a staff member came in, she said, “My daughter [me] has put me in a home... Whoever would have thought it would come to this?” The staff member answered all her demands, and once she was reassured that all her requirements would be met and she could have her own way in all things, by the time my hubby and sister left, she was actually smiling!!
We left her alone until yesterday afternoon, to settle in, and not to be stirred up into dwelling on what she’d given up, as she might have done if she’d seen my hubby. He’d promised to go in on Friday afternoon to tell her how I’d got on with my operation. When he arrived, she asked how I’d got on, and he told her about the postponement, and then she said, “Thank you for finding me such a lovely place.” When my hubby told me this last night, I practically fell out of bed with shock!!! If only she had trusted us to make the right decision for her from the word go, we could have been spared all the unendurable stress of the past fortnight. I was wryly amused that it was me who was accused of putting her into the home, but my hubby who was thanked for finding such a nice place for her! Oh well. I’m beyond caring now.
The big black blob that Nita drew on my tummy to show where the stoma will go has faded somewhat – it took a bit of a beating in the shower yesterday morning – so this morning I went over it again with my own permanent black marker, and while I was at it, added a mouth and some eyes so that it is now a round black nose in a funny face! (Perhaps I should have drawn an animal’s backside around it, like some of the tattoos I've seen online around stomas!!) Hopefully it will give Mr. Pullan a laugh, anyway, when the time comes.
My hubby’s physio appointment went well. She said he now has full range of movement except in one direction, and has given him some different, more strenuous exercises. There is apparently some strong resistance to movement in that direction, which may indicate that something has moved out of place, and all the exercises will do is to cause discomfort, but he is to try them until his next appointment and see what happens. He may require minor surgery to correct whatever is wrong if the exercises don’t correct the problem. He will have a further X-ray to check on the bone that was broken. I am very glad he was persuaded to go, because it is essential that he takes care of his own health and doesn’t put it on the back burner, what with everything else that’s going on.
So we now have a few days of the desired respite, with the house to ourselves, and time to prepare for the surgery. I will update this diary when we have another date for take-off, by which time let’s hope the fog has lifted and the destination airport will be ready to receive me.
Monday 2nd March 2015
Back in Limboland Again
I felt a lot better emotionally on Saturday and Sunday – more stable and grounded, but totally exhausted physically – typical M.E. payback following on from mental stress and lack of sleep – after a bad night I had to get up extremely early to be at the hospital in good time on Friday.
Today I am still very tired physically and have been resting most of the day, but I have been feeling very unsettled again, all day. I had hoped for a phone call from the hospital today, with a revised admission date, but by mid-afternoon there was nothing, so I phoned Mr. Pullan’s secretary to see if he’d managed to sort his diary and fit me in, and if so, when. She wasn’t there, so I left a message on her answering machine, and she hasn’t got back to me.
Hopefully someone will phone tomorrow. I hate this not knowing, and all the uncertainty. At least with the first (abortive) attempt I had a definite date, and could work towards this – and knew what food I needed to get in, when to do the laundry and other practical arrangements. As things stand now, I haven’t a clue. Will I be in this week? Next? When? When I asked Mr. Pullan whether it would be days, weeks or months, he couldn’t tell me as he didn’t have access to his diary, and all he said was that he’d do everything he could to get me in at the earliest opportunity. I doubt if it will be months, because the cancer has got to be removed quickly, and they don’t mess about. I just wish I had a date...
In the meantime, between napping on the recliner and reading my book, I have been online and doing some more research about ileostomies, and am finding the forum I am on to be quite excellent – the advice from the old-timers is invaluable, and they have a lot to teach even the specialist nurses, who do an excellent job, but are always ready to learn from those who live with it! All this is helping me to become more familiar with this foreign country with its very different way of life, and I am finding that the whole idea of it is slightly less freaky now. I know I shall continue to have my moments, but I believe the trend is now generally “up.” My hubby said to me this evening that I would probably be the best-informed patient on the ward (although I doubt that – everybody’s doing online research these days!) and that he was very proud of me. Bless him... I don’t feel at all worthy of that, as most of the time I’m still a quivering jelly about the whole thing!
How I hate Limboland. Its bleak, featureless landscape with all its hidden emotional pitfalls, is not a place one wants to be. At all.
Tuesday 3rd March 2015
We Have a Date!
I had a letter in the post today from the hospital, with the date of my rescheduled surgery – Wednesday 18th March. I have to present myself at 12 noon which means an afternoon operation. I am glad it is not first thing in the morning this time, although I don’t suppose I shall sleep much better on the night before the surgery than I did before!
I am glad that we now have a date to work towards, and I can make arrangements as before – practical things like what food to get in, when to put the last load of laundry on, etc.
However, I still feel unsettled and can’t really put my mind to anything else. It’s a weird period, all this waiting around for the next thing to happen, but at least the time scale is short compared with other medical problems – with cancer they don’t mess about, do they.
Over the past few days I’ve spent a lot of time researching ileostomies and reading other people’s experiences, and in particular gaining a great deal of insight from the stoma forum I am on, where there is not only a lot of excellent information and advice from people very experienced in dealing with a stoma, but it is also a source of a great deal of quite brilliant humour! This has helped me no end, and at least for now I am feeling a lot less freaked out by the whole business. I am thinking of passing the URL on to my stoma nurse because I think anyone having a stoma could benefit from this support.
The stoma nurses are wonderful and offer lots of helpful advice on bags and other equipment, and how to deal with the stoma day to day, and help one through the first, difficult phase immediately after surgery before the swelling has gone down. However, most of them do not have direct experience of daily life with a stoma, and the advice one can get from fellow ostomates has to be worth its weight in gold.
With everything that has been going on, and with my head filled with thoughts and concerns about the surgery and the ileostomy, I have scarcely spared a thought for the cause of all this – the cancer itself. It’s as if we can’t cope with too much all at once, and something has to take a back seat. It is only after surgery, when the removed bowel will be sent to the lab for histological examination, that we will know the full nature of the tumour; how far through the bowel wall it has spread, and how aggressive it is. If the cells are very abnormal, this will mean that I will need some chemotherapy (probably only one cycle) to prevent the cancer from returning. They believe the surgery will be completely curative, but any chemo will merely be to ensure that this is so. I am not thinking that far ahead, and will cross that bridge when we come to it. (How, I wonder, does one cross a bridge before one comes to it...?)
Following an interesting discussion on the stoma forum, I have been giving a lot of thought to stoma awareness. These days, our society is remarkably free and easy about what is acceptable for individuals to do and think, and many things considered taboo in days gone by are now discussed openly. One thing remains very private and not generally considered a subject for polite conversation and that is the subject of our bodily functions. Children gain enormous enjoyment from telling jokes about it, probably all the more so because it is a subject they can see is disapproved of by adults. Maybe it is time that this attitude was changed! What is so wrong with it anyway? We all do it at least once a day, we all buy toilet paper quite openly, and all the necessary plumbing is openly on show in every B&Q and Homebase across the land!! It can also be extremely amusing, if one keeps a child-like attitude! We do tend to take things too seriously.
One person on the forum is a great champion of stoma awareness and wears clothing with stoma awareness slogans etc. She says everybody she knows is aware that she has one, and it’s not a problem. Another member said she thought it was a shame that this had to be a “private club.”
A generation ago, disabled people were hidden away, and it was rare to see a wheelchair user out and about, and people tended to be quite shocked. Nowadays they are two a penny, and much has been done to make that possible, with accessibility awareness, although there is still a great deal to be achieved. People are much more aware these days of medical matters, and most people have access to the Internet, and there are many TV programmes about such things. There are still some ignorant people about, of course, who persecute the handicapped with their old-fashioned and discriminatory attitudes, but speaking from my own experience on the receiving end, most people have a lot more understanding, and make allowances, and are generally very helpful and friendly towards the likes of me, who simply get about in an alternative fashion.
Most of the problems experienced by disabled people come about because their particular disability is invisible. One constantly hears of people being wrongly accused, and discriminated against, for using disabled toilets and disabled parking spaces, because they “look normal.” I have experienced some of this sort of thing in the past, before my disability became more visible and my mobility aids became a badge of approval. When I was little, I had a teacher at my first school who wore two pink hearing aids which were very visible, and had wires attached to two boxes pinned to her clothing. This was the only sort of hearing aid available in the 1950s, and everyone could see she was deaf. Deafness is not something to be ashamed of and hidden away, but today, hearing aids are so small, and so darned discreet, that you cannot tell who is deaf and who isn’t! If a deaf person doesn’t hear what is said, and either ignores the other person or answers inappropriately, they are often discriminated against, and judged as being “stupid.” Some children’s hearing aids are made in fun colours and patterns, and are more obvious. If the disability aid is visible, no explanation is needed, and allowances can be made. And if they are visible, why should they not be attractive? I decorate my wheelchair and every time I go out, I get smiles and lovely comments, leading to enjoyable conversations with total strangers, and they go away with a smile on their face and often such remarks as “You’ve made my day.”
The only difference between ostomates and the normal population is that they poop from the front instead of the back, even if they have to go through a lot to get there. As the forum member also says, we have had to face a great deal of suffering and fear, of things like cancer, before we get our stomas, and to get to that point is something we should be very proud of. She says we should wear our bags with pride!
The bags are very discreet. The first thing Shaz said to me when she and her hubby came to visit recently was, “You can’t see anything, can you!” It’s true – I couldn’t. She was reassuring me. However, perhaps that is part of the problem. They are so darned discreet that you cannot tell who has one and who hasn’t, and this perpetuates the “secret club” attitude and prevents true stoma awareness, where this problem is openly accepted in society. My stoma nurse mentioned a couple of times at my last appointment that it was “sadly often” that she had to go through this procedure with people – the problem is clearly on the increase. Since I got on this bandwagon, I have heard numerous anecdotes from friends about people they know who have stomas, and who manage very well with them and live a full and normal life after their surgery – all very encouraging for me!
Perhaps if we all wore our bags on the outside, this would become as normal as seeing people using wheelchairs! We could put attractive covers on them to co-ordinate with our clothing so that they didn’t look quite so much like medical appliances, much in the same way as I decorate my wheelchair to reflect my personality. People would eventually get used to this, and it would become a much more acceptable part of daily living and people would make allowances for the need to get to the head of the queue for the loo, for instance. Why are we all so embarrassed about going to the loo anyway?
If attitudes were to change, awful things like this could perhaps become a thing of the past:
Someone commented that if a baby’s nappy leaked, the mother would hardly be asked to leave the bus!
Anyway, this is just me thinking aloud, and I am sure that because of current attitudes generally, most people reading this will probably be throwing up their hands and saying, “No way!” and I expect that we will all go on hiding our bags and being very discreet, and being very good, not telling people we’ve got one, and attitudes will continue not to change. Oh well.
Saturday 7th March 2015
A Nice Restful Week
It is now just over a week since I should have had my surgery, which was postponed because there was suddenly no High Dependency Unit bed available for me, and my surgeon, Mr. Pullan, said he was not prepared to go ahead without that safety net in place, given my other health issues.
That Friday was a horrendous day and I was left feeling devastated and confused. I had really psyched myself up and was well down the admissions process, having signed the consent form, been measured for anti-DVT stockings, been given my wrist band and had my bag tagged and ready to be sent to the ward. To be sent home at this point was a complete shock to the system, and when we got home I went straight to bed and slept right through till tea time.
Over the weekend I calmed down and came to realise that the postponement was a blessing in disguise – albeit a heavy disguise! What we had hoped for was a good clear fortnight of peace and calm in the house before I was admitted, having got Mum into respite care, so that I could rest, leave all that awful stress behind, and prepare for what was to come. We were completely denied this, by Mum’s obdurate refusal to go until two days before I should have gone in, which cranked up the stress levels notch by notch during that fortnight, leaving me in probably not a fit state for surgery anyway. As things have panned out, we have been granted our quiet fortnight, leading up to my re-scheduled admission on Wednesday 18th March.
I received the date on Tuesday, up to which point I felt very unsettled and in limboland again, unable to make any plans at all because I didn’t know whether I’d be in this week, next week or next month! As soon as I received the date, everything fell into place and I felt normal again for the first time for ages. I did an online grocery order that night and took great delight in ordering lots of foods that I know I shall be forbidden for a long time, if not forever – fresh pineapple, mango and nuts amongst other things! I’ve been pigging out on my favourite foods this week, and on the instructions of Mr. Pullan and Nita, the stoma nurse, abandoned my 5:2 diet for the duration (I will need all the proteins I can get, for my body to heal, and carbohydrates for energy) and as a result, this week I have gained 3 lb! I am not worried by this, because there will be plenty of time to get back on track with the diet once I am fully recovered, and anyway, Nita said, I will most likely lose weight through the procedure.
The house feels completely different in the absence of Mum, and I am enjoying a lovely restful time, being on the laptop, watching TV, lying in late each morning with a good book, cuddling the kitties, and letting my hubby spoil me! He needs the rest, too! He has been rendered utterly exhausted by all the battles with Mum, and was consistently waking at 5 a.m., worrying about what would happen if she continued to refuse to go, and everybody was saying how tired he was looking. He needs to get his strength and energy back in readiness for the time when I come out of hospital, when he will have a great deal of work to do, caring for me in the immediate post-operative period.
When Shaz came to visit recently, I showed her what my hubby calls my “girlie bathroom” and showed her the RUBs (Really Useful Boxes) I am collecting in there for storage – amazingly they fit perfectly in the custom-made shelves that Paul constructed when he created my bathroom for me. I had earmarked one to keep my stoma supplies in, but Shaz said that you get your supplies sent monthly, and it’s quite a big box that arrives, so I would need more storage space than just one box. She told me that she has a plastic tower with drawers for hers, and I thought this sounded a very good idea. I have a fairly large knee-hole space under the counter-top basin, and doing some research on the RUB website, discovered that I could custom-design my own storage tower to fit part of this space. Unfortunately the depth of the space is more restricted than the shelf space, because of the pipes for the basin, but I have worked out that I can have a small tower tucked to the right hand side of the drainage pipe. The tower will stick out about 4 cm beyond the front of the counter but you can’t have everything, and I think it will look fine – I couldn’t find anything else that came anywhere near what I wanted, and being such a RUB junkie, it seemed appropriate to order from them!
Here is a screen-grab of the tower I designed.
You can see that I have chosen three small drawers and one large one, and a set of castors. The tool doesn’t show the top I have chosen – you can choose between a flat top and a “stationery tray” and I have chosen the latter, for storing small accessories like individually wrapped wipes, and scissors. This is what the tray top looks like.
You can also get a stationery insert, which sits in the top portion of a drawer, but I thought the top one would utilise the space better, so that I am not losing any drawer space. You can also choose to have standard RUB boxes instead of drawers, but these would have to be pulled out completely, and the lids removed, in order to access the contents, and their capacity is less than the equivalent drawers, too.
So I think I have planned a nice tower! I can keep spare supplies in the lower drawers, and use the top drawer(s) for stuff currently in use. The whole tower can be pulled out so that I can access the tray in the top, and use the countertop beside the basin to lay things out. It should be here in a few days and I am looking forward to assembling it and putting it in place, ready for when I come home.
I have also ordered another toilet roll holder from Ebay.
I already have a nice free-standing one with a toilet brush underneath, but someone on the stoma forum said that you get through quite a lot of loo paper – it is recommended that you put some in the toilet before emptying the bag, to avoid splashing (sorry if that’s TMI for the more squeamish amongst you!) and it’s silly to use the most expensive soft luxury paper for that! I bought a pack of Tesco’s cheapest, and this will go on the new holder, which has storage for further rolls underneath.
In addition to these home preparations, I have also got hold of a good selection of DVDs from Ebay, that my hubby will bring into hospital when I am up to having the laptop. If I don’t watch them in hospital, they will be something nice to look forward to when I come home. During my searches on Ebay, I also found a DVD of one of my hubby’s favourite films so I bought it for him as a thank-you present, and he is saving it to watch while I am away.
So I’m getting all set up for my return home! The specialist nurse and various other people with whom I have had hospital appointments, have all asked how I am set up at home, and they are reassured that I already have a lot of adaptations and aids in place – stairlift, adjustable bed, perching stools, mobility aids etc. etc. If they think it is necessary, they will get the OT to come out and assess any further needs I might have. They are certainly covering all eventualities.
This week I feel calm and normal, if rather exhausted by recent events! I am deliberately not focusing too much on what is to come, because there will be plenty of opportunity for freaking out nearer the time! These few days are an oasis of calm – the calm before the storm, and I am enjoying so many things, including all the lovely cards and flowers and gifts I have been receiving from our many friends and family members.
Monday 9th March 2015
Thoughts from Within the Bubble
Only just over a week to go now till the 18th – I have to confess that despite the kind words of many friends, when the time approaches I do not think I shall be feeling either calm or courageous – but until nearer the time I am firmly closing my mind to freak-out mode and burying my head in the sand so that we can enjoy this period of peace and quiet. When we went in the first time, for the abortive admission, and at my previous appointments with the High Dependency nurse and the stoma nurse, I was anything but courageous, and weeping all over the place and stressing over Mum... It was quite awful, and on that frightful Friday I was practically climbing the walls. At least Mum is out of the picture for now, and that has helped A LOT. I now know for certain that the Lord organised the postponement of my surgery so that we could, after all, enjoy a clear fortnight sans-Mum, before I go in – something she made quite impossible, first time around, because of her obdurate refusal to go into respite care. The Lord has had His way in the end!
This last week has been great, and we had our wonderful slap-up Chinese meal the other night (probably the last for a long time, if ever – although I shall ask my hubby to get us some more takeaways before it’s too late!!)
I had a really weird experience about the health forum I am on. Back in the summer, I was doing some research about coronary artery spasms after my time in hospital, and came across an article posted by someone on a health forum, and I clicked on the link to see what the forum was all about, and before I knew what I was doing, I’d signed up as a member! I remember saying to myself, “What on earth are you doing, signing up for yet another forum when you hardly have enough time now to keep up to date with the ones you’re already on?” It is a huge international health forum with separate boards for any and every disease under the sun, and you choose which boards you want to join. I initially signed up for the heart one, but actually spend very little time on there now as I have few symptoms to complain about – just the odd angina attack, usually brought on by Mum-induced stress. I also signed up for the digestive system disorder board because of my ulcerative colitis, and soon started making friends. I found that I was starting to bless people on there, and started thanking the Lord that it was He who had directed me there, and it wasn’t a mistake after all! Sometimes with hindsight, what seems to be a mistake can be seen as God’s hand at work – the way things fall so easily into place. Having already made friends on there in advance of my own major crisis, I had my feet “well under the table” and in a position to be helped by others. Truly the Lord knows ahead of time what is best for us!!
I am now so glad that I have spent so much time on the forum, and have been given the time and opportunity to do so. I had no idea I would have anything to give at all – one tends to look on these forums as sources of information, advice and encouragement for oneself, especially when one is a newbie! When I signed up for the stoma board, I could not believe how much helpful advice and fun there is on there, and how generous and honest everybody is, and how encouraging. It has certainly taken the sting out of it and I’ve been getting more accustomed to the idea, in advance of the actual event, although if I let myself dwell on it (which I’m not at present) the whole idea still fills me with horror –my hubby says it’s probably something to do with being a woman, as we are far more concerned with body image than men, and I think this is true. I went into a sort of bereavement after my hysterectomy, although with my head, it was something I wanted done, knowing it would improve my health no end, but in my heart I was depressed and confused, and it was only after one of the wonderful nurses explained that I was grieving for a part of my body that had gone forever, and the part that was central to my womanhood, that I understood that there’s a much more deep-seated, visceral reaction to these things than our rational intellectual reactions. In this case, my external body image was very little changed; the operation scar is now quite invisible. The changes were internal only.
With this, it is quite different. I had no inkling that I had cancer; there was no lump to feel, and no pain, and no untoward symptoms at all. My colitis was well controlled with medication, and I expected the colonoscopy to reveal what I already knew, that the medication was working – it did show that most of my bowel now looked normal and healthy, as opposed to inflamed and ulcerated the whole way round, which is what the first colonoscopy revealed. To be told I had a tumour was a shock indeed.
People on the forum encourage others by saying that once they’ve settled down with the stoma, they will feel so much better because their bowel symptoms that made it necessary in the first place, will disappear. I really don’t have any bowel symptoms now, and what I am going to be facing after the operation will be worse than how I feel now. With my head I know that this has to be done to save my life, because the cancer must go, but it’s much harder to accept than my hysterectomy was. The “head in the sand” part of me wants to run away from the whole thing, saying that surely it isn’t necessary to put me through all that pain and discomfort, and having to learn a whole new way of life, and have my diet ruined so that I can no longer enjoy my favourite foods, when at the moment I feel as well as I ever do! I am also realistic enough to know that it will affect my M.E. and my recovery will be longer and more arduous than for an otherwise healthy individual. So I am starting out with a much more negative attitude towards the whole thing, even though I know that in the long run it is essential for my continuing health, and ultimately for my life. The after-effects of this operation will be clearly visible to me for the rest of my life – a long scar running vertically from sternum to pubic bone, which will not disappear as the other one did, being hidden by hair – and a red stoma protruding several cms from my belly, looking quite alien although it is actually part of myself – and a bag, and no longer any control over the output from my body. To start with, these physical changes will look very much worse than their appearance once the post-operative swelling has gone down, and the stoma will eventually reduce in size in the first two or three months after surgery, so the initial appearance will be a great shock, seeing it at its worst.
I can really understand the feelings of shock, repulsion and grief that people suffer immediately after an amputation or mastectomy. Our body image is very much a part of us, and looking at our own violated body, especially when we are suffering the normal aftermath of surgery – exhaustion, emotional vulnerability, depression, shock and pain (although this latter is being very much better dealt with these days), is a huge thing to take on board. Knowing that the violation is necessary to save our life is a cerebral concept that doesn’t help over-much in the initial days and weeks.
These are complicated issues to work through, and while I know that these very natural feelings will pass, and it is immensely encouraging to read the stories of seasoned ostomates on the forum, and their continued reassurances to us newbies and those imminently approaching surgery that eventually all will be well and we can return to a more or less normal lifestyle, it’s the “getting there” that’s my main problem. When I think about what’s involved, all I want to do is run for the hills. No wonder I am so enjoying being in my current peaceful bubble and so much enjoying the simple pleasures of my life as it is now, and each special meal treat feels like the last meal of the condemned man!! I shall look back on this very special time with great affection, I think!
I am glad we’ve got this fortnight without Mum. I have been very, very angry with her for what she has put us through, and I haven’t seen her since she’s been in the home – for my own peace of mind and keeping calm and focusing on what’s more important at the moment, I’ve kept well away, and this accords with the advice of a great many people. She has had her life and made of it what she herself has chosen – being miserable all the time, and moaning and complaining is HER choice, and I’ve had enough of it, and of her constant shouting at my hubby after all he’s done for her, and I cannot go on carrying the burden of stress. I am waaaay beyond guilt where she is concerned, and she has tried my patience beyond the limit now – provoking me so much that I find it quite impossible to honour her. I actually feel very little now, and am just glad she’s out of the house and out of reach of being able to affect me. Quite frankly I don’t care if I never see her again. I have had to rid myself of all that in order to prepare myself to be strong enough for the operation.
So, I am enjoying Bubble Time. Hopefully before I go into hospital, I will be able to enjoy some physical Bubble Time, soaking in the bath, too!
Monday 16th March 2015
My hubby came home this afternoon with the devastating news that he’s had a phone call from the hospital to say that because my surgeon has got some sort of family emergency, he cannot do my operation on Wednesday!!! I don’t believe this is happening... I know it’s nobody’s fault, but it’s doing my head in, getting all psyched up for this huge operation and then being let down, not once, but twice! There’s no guarantee at all that this won’t happen again. People say lightning doesn’t strike twice in the same place, but the way things are going, and the hospital bed crisis in the UK as well, I am wondering whether I am ever going to have this operation at all!
So now we are back in the waiting game. It is really very difficult, not knowing when it is going to be, and how long I shall have to wait to hear. It makes practical planning at home quite impossible – things like the laundry, shopping, etc. etc.
All I want now is to just GET ON WITH THIS and get it over and done with. I am sick of all this messing about.
Tuesday 17th March 2015
Today I should have been busy, getting ready for my admission into hospital on Wednesday but as it happens, after all this emotional stuff, I am physically exhausted and have spent the whole day in Kaftan Mode on the recliner! I have not wasted the time, though, and have been looking at diet options post-surgery.
In the initial post-operative period I shall be on a very restricted, bland, low fibre diet to allow my small intestine and the stoma to heal. After 6-8 weeks I will be able to introduce small quantities of more normal food, one at a time, keeping a food diary to see what effect it has. The most frequently reiterated piece of advice is to “chew, chew, chew” - most people don’t chew their food sufficiently, but for ostomates this is essential. It occurred to me that I now had a theme tune (chewn?) for when I become an ostomate:
The Chattanooga Chew Chew lol!!
I have been very concerned that I will not be able to enjoy many of my favourite foods for a long time, if ever again – I am a huge fruit eater and eat fresh pineapple and mango most days, and I enjoy nuts and seeds, all of which are far too fibrous, or hard – these things can cause blockages and can be very dangerous for ostomates.
On the stoma forum I am on, I have discovered the wonderful world of the modern, ultra-high speed blender. These amazing machines literally pulverise whatever you put into them, in a matter of seconds, and I am thinking of purchasing one. They are not cheap, but if this is going to enable me to continue to eat the delicious and healthy foods I am accustomed to for the rest of my life, it is a small price to pay. The machine I have chosen has an interesting website with comparison videos, working the machine alongside different ones to compare the results, and this particular one is so powerful that it will actually crush rocks!! They’ve got a video to prove it.
The rock crushing video is near the bottom.
I have also decided to start a second blog, after I come out of hospital. This diary page is getting pretty long, and if the surgery does deal with the cancer completely, as we are hoping, then it will become defunct – I shall leave it up, but will probably only add to it after coming out of hospital if I need any chemo. The new blog will have links to and from this main blog, and will be about life with an ileostomy – again, for my own benefit, to look back on and see my progress, and also hopefully to help others going through the same thing. It will chart my progress, and deal with the problems new ostomates all have to cope with in the early days, and will cover such aspects as equipment, diet, things to help (e.g. the high-speed blenders) and last, but not least, humour! It will be a wonderful avenue to share with others what I have learnt, and will continue to learn, from my fellow forum members, and I also hope it will increase stoma awareness.
There are many more bag ladies and gentlemen out there than most people realise. As I wrote in my Stoma Awareness passage in a previous post on this diary, because of the taboos associated with all things poo, nobody talks about it! A beautiful young lady on the forum has recently posted a picture of herself sunbathing on the beach in a bikini, exposing her bag. I salute her courage. Why should we be ashamed?
Hopefully the next entry on this diary will be with a new date for my surgery! It can’t come soon enough now.
Friday 20th March 2015
Gradually Moving Towards the Goal
Today, when the post revealed nothing from the hospital, I decided to phone Mr. Pullan’s secretary to find out if there was any news. She told me that Mr. Pullan would not be returning to the hospital until Tuesday, but that my name was already at the top of his list. I asked her to phone me as soon as the new date was confirmed for my surgery, and this she willingly agreed to do. She said that it was probable that it would be a week today, Friday 27th March in the afternoon, but of course, in the absence of Mr. Pullan, she could not definitely confirm this. This date will be exactly one month after my first, abortive, admission, and I must say I have been thinking a bit more today about the cancer that is still in my bowel, silently growing, and I am now more anxious than ever to get rid of it, so the sooner I can go in for surgery, the better. Mr. Pullan clearly isn’t over-concerned that the cancer will grow that much in the time, or he would have arranged for one of his colleagues to take over in his absence, so I am telling myself not to worry, because I trust those in charge of my care, and they are looking after my best interests.
The delays have been hard to deal with, but in the end, I did need the extra rest, and this final delay has enabled me to do quite a few things that I didn’t think I’d manage to do until later. Our tax advisor/accountant is coming to our catchment area in mid-May, and I need to have filled in his form and collated all my hubby’s paperwork before that time, and knowing from experience what my already foggy brain is going to be like in the period immediately after I come out of hospital, it is good that I have started on this work before I go in. Also, as you will see from today’s regular blog post, my new buggy has arrived, and it’s nice to have given it its maiden voyage straight away, without having to wait until I was strong enough.
I have also used the time to start my new blog, which I wrote about in the last entry on this diary. It is “live” now, although I haven’t yet posted anything on it, apart from the page entitled “What is an Ostomy?” I am still working on the page elements, but I have done enough work now to be able to launch straight into it when the time comes. Hopefully I will be well enough in hospital to have the laptop and to get online after a few days, but if not, it will keep until I get home. If the worst comes to the worst, I can jot down some draft notes in a notebook, ready to compile into blog entries once I’m home again. The new blog is called “The Gutless Bag Lady – Life with an Ileostomy” and you can access it here if you want to hop over and take a look. It is still under construction, but you can get an idea at least.
We are looking forward to a nice quiet weekend before we launch into the whole admissions thing yet again.
Tuesday 24th March 2015
We Have a Date – Again!
Today the hospital phoned to say that Friday 27th March is confirmed as the date for my surgery, as we hoped it would be. I am to go in at 12 noon. I have the energy drinks from the previous abortive admission, and will take the first ones on Thursday, and the second ones on Friday morning before I go in.
Looking back, the two postponements, although really frustrating at the time, have proved to be a blessing in disguise. The first one enabled us to have the complete rest and relaxation after Mum went into the home, which she had denied us before, by her obdurate refusal to co-operate, leaving us only 2 days to recover! The second postponement has enabled me to have a few more days’ rest, and also to achieve more things.
Our accountant/tax advisor is coming down in May to visit our catchment area, and last week he sent his form for us to complete, and had I gone into hospital on 18th March, I would have had to deal with this in the immediate post-discharge period when I would have had anaesthetic and post-operative fog added to my normal M.E. brainfog, and I’m not sure how well I would have coped with trawling through financial papers and getting my head round boring money!! I have been able to get as much information as possible collected together now, well in advance. Also, last week we collected my new lightweight buggy, which we have been putting through its paces, and really enjoying the freedom it gives us, to take trips further afield in the car without my hubby having to push my wheelchair once we reached our destination.
We have also had some meals out, and seen people, and I managed to get to church on Sunday for the first time for several weeks, and it was amazing, as soon as I went through the door – everyone fell on me! They’d missed me, which was so sweet. It was a lovely service, too, and afterwards the visiting minister prayed for me and my situation. They were all able to wish me well and send me on my way.
On Sunday afternoon I phoned a very old friend that I had had no contact with for a while (entirely my fault – she didn’t even have our new address or phone number!) and we were able to catch up. She has now been added to the great number of others who are praying for me!
I’ve been able to sort out a few things at home, like organising the freezer a bit, and today I started getting everything together to format my small laptop which is practically grinding to a halt – it would be lovely if I could get that completed by Friday as it’s smaller and easier to manage than the large one. I am planning to put some videos on it and get my blogging stuff on there too, so I’m all equipped when my hubby brings it in for me. However, I may not get that job completed... it’s quite a big job. I’ve got all my lists of tasks to do, from the last time I did it, so I know what needs to be done. We shall see.
So... off we go again! Let’s hope nothing else goes wrong this time!
Friday 27th March 2015 and onwards...
Admission and Early Days in Hospital
I am writing this diary entry on Sunday 12th April, several days after my discharge. I had hoped to be well enough after a few days, to have the laptop in hospital with me, but it wasn’t to be – I was far too poorly, and unable to concentrate on anything, and it was the last thing I wanted to do.
We arrived at the hospital at 12 noon on 27th March, only to be told that they had tried to phone us (we’d received no message) to say that there had to be yet another postponement – the third!! The reason was the same – sudden unavailability of a High Dependency Unit bed. At this news, I completely lost the plot, burst into floods of tears and sobbing and said “I simply can’t do this again... not again...” and the nurse left us and said she would return shortly. She came back with the anaesthetist about 10 minutes later, and he explained that the main reason for the necessity of the HDU bed was that for optimum post-operative pain relief, they proposed giving me an epidural, which had to be given with a chemical which would reduce my blood pressure, necessitating more constant monitoring than would be available on the ward. He then gave me the option of an alternative post-operative pain management regimen, with a multi-pronged approach, which would be less effective, and would require less assiduous monitoring in the immediate post-operative period, and I said, “I don’t care what you do! Just DO IT!!!!!” and said that even if the pain wasn’t managed as effectively, it was still preferable to being sent home yet again. So we ended up being very glad that we’d never received the message, or we wouldn’t have come in and had this discussion.
They agreed to go ahead on this basis, and went away to set it all up. We had a bit of a wait, which enabled me to calm down, and then I went down, and received my anaesthetic at 3.15 p.m.
The next thing I knew was being awakened (with some difficulty, as I later heard) at 6.45 p.m., only 3 1/2 hours later – I had expected the operation to take at least four hours. My surgeon later told me that it had all gone very smoothly.
I spent the whole night in the recovery room, which was really every bit as good as the HDU – I was monitored at very frequent, regular intervals and during this time had an arterial catheter in my left wrist for continuous monitoring of blood pressure and blood gases, which was removed before I went on the ward. I hardly slept; I drifted off, and each time I woke, saw that the clock above me had advanced by only five minutes... I was completely immobilised by all the attachments and the residue of anaesthetic. My bed was taken up to Allerton Ward (the gut ward) at about 7 in the morning and so my stay in hospital began.
Working down from head to toe, after the removal of the arterial catheter, the attachments consisted of: nasal cannula for oxygen (two little tubes in my nostrils connected via tubes which went behind my ears); naso-gastric tube (NG tube) for gastric decompression – this remained in place for quite a few days and became increasingly uncomfortable; my nose was consistently very dry and congested during this period and I was unable to clear it; cannulae in my hands and wrists for intravenous fluids and the PCA (patient-controlled analgesia) – a syringe driver for self-administration of morphine by the pressing of a button – it is impossible to overdose with this because it remains inactive for five minutes after each button-press, and the doses are monitored; rectus sheath catheters either side of my abdomen for the adminstration of doses of local analgesia via syringe – each bolus took some time to inject owing to the narrow gauge of the lines, and it felt cold as it entered my body; surprisingly no wound drain; urethral catheter – urine collected in a bag and measured, as was the input from the intravenous fluid drip – after these were removed, for the first few days I had to pee into a pan and this, along with my water consumption, was measured, to check my fluid balance; finally, a foot compression system – fabric “boots” on my feet which inflated, compressing each foot alternately, to assist circulation in my legs. One lady on the ward told me that her first thought on waking from her anaesthetic was that Torbay Hospital was a wonderful place – she even had her own personal nurse to massage her feet! This was a strange sensation, somewhat hypnotic, but I found it relaxing and very comfortable.
Over the following days, all these attachments were gradually removed, one by one, until only one cannula remained in my right hand, in case it was needed; eventually this was also removed, and I was free at last! Greatest relief came from the removal of the NG tube; most of the other attachments caused me no problems, apart from the time my PCA morphine cannula failed. It had to be removed, and a very young doctor made several attempts to insert another in my left hand, causing considerable pain and discomfort, and without success; eventually another was inserted in my right hand, but by this time I had been off the “pain button” for some considerable time and my pain level had escalated quite considerably.
Unfortunately my hubby was with me while I was enduring this torture and he saw me at my very worst – the pain caused in my hand reduced me to tears and I felt extremely vulnerable and upset, and then my abdominal pain was too severe for comfort, as well.
That night my hubby went home in some considerable distress. He decided he couldn’t face cooking so he went out to get fish and chips, and managed to trip, and fell headlong in the road and landed on his face.
The next day he came in with a woollen hat pulled right down, and a couple of small black haematomas around one eye; I asked what had happened and he eventually took off the hat to reveal a large and very ugly bump on his head. During this period I was feeling very weepy and emotional (a very normal response to surgery) and it didn’t take much to set me off, and the sight of my poor hubby in this state reduced me to tears! I asked if he had been to A&E and he said he had just treated the bump with a bag of frozen peas and a couple of steroid tablets from his bee-sting allergy kit. One of the nurses heard us talking and said, “Let me take a look at that...” and sent him off to A&E to get checked out. As he thought, he had no concussion, but having it looked at put my mind at rest. The following day he looked an absolute fright – at his very worst, with the bump looking very angry, and two great black panda eyes! His appearance is now much improved, but the bump is still there. My poor dear hubby... Not a good day for either of us, that one!
When I first woke from the anaesthetic my mouth was very dry, and all they would give me was tiny sachets of water, only sufficient to moisten my tongue. Over the next day or so I just received fluids intravenously, but I was soon put on the “free fluids” diet which consisted of soup without lumps, jelly, ice cream, yoghurt and the endless Fresubin energy drinks on offer (I had to drink three of these the day before my surgery) but I hated them as they were very sickly and sweet. After a couple of days of this, I was put on the “light” diet which I am still on; very low fibre: white bread, cornflakes, rice crispies, rice, pasta, honey, yoghurt, mousses, chicken, fish, parsely sauce, rice pudding, ice cream, jelly, eggs in all their forms, potato (no skin) – no fruit or fibrous vegetables, but I can have well-cooked carrot and broccoli (florets only).
After my operation wounds have healed and the internal swelling has gone down (6-8 weeks post-surgery) I can begin introducing other foods, one at a time, and keeping a diary to check the reaction of my stoma. I have a follow-up appointment with my surgeon around this time.
For the first few days, the nurses emptied and changed my stoma bag, and when I was a bit better, the stoma nurse started coming on a daily basis. She came during visiting hours so that my hubby could be involved in the learning process. She showed us how to empty the bag, and how to remove it and clean the stoma, and how to apply a new bag. Each day we did a little more, and eventually we were doing it without her help. One day my hubby did the whole thing by himself; it will be useful for him to be able to do it if I have a bad day with my M.E. and don’t feel up to coping with it. They do not send you home until they are confident that you can manage this independently.
In the early days, they get you out of bed as soon as possible, usually the day after your surgery, but because of my M.E. and a lower baseline from which to begin my recovery, I was not got out of bed until the Sunday. They made me sit in the chair beside the bed, which was too high and incredibly uncomfortable, and I felt very unwell, and I was back in bed as soon as I possibly could. There was no way I could cope with it. Later in the evening I had a brainwave and the nurses phoned my hubby and asked him to bring in my wheelchair, which is designed for my measurements, and I was much more comfortable sitting out. As for mobilisation, I was given a Zimmer frame and initially managed to make it to the loo but needed a nurse to push me back on a commode chair, and I needed assistance in the loo. Eventually I was able to manage all this by myself.
When I had my first shower and hair wash, the OT helped me and I was extremely exhausted afterwards, and returned to bed and didn’t get up again that day. The next time, a few days before my discharge, I was able to manage myself, but did not wash my hair until I returned home.
I slept badly throughout my stay. Part of the problem is that with my M.E., I tend to be mentally alert very late into the night, and was not at all ready to settle down at the same time as everybody else. It was also very noisy, even with earplugs, and they kept disturbing us to do our obs (blood pressure, temperature, blood gases) – at first these were done very frequently, and initially my blood pressure was very low for several days, with my systolic pressure being around 95, and my blood oxygen was low as well, so that I had the oxygen cannula for nearly half my stay. Things improved as I became more mobile. Another problem with the sleep was that because I slept so badly at night, I kept wanting to sleep during the day, which made the night-time problem even worse. I became very frustrated with this. Somehow the hours pass far more slowly at night, and initially I was unable to concentrate sufficiently to read, and my eyesight seemed poor – probably as a result of the morphine.
My hubby took this picture of me the day after my surgery, shortly after I arrived on the ward. He calls it “The Morphine Smile” lol! I look pretty spaced out... I have Nursie Bear to look after me, and she is taking care of my “pain button” – you can see the syringe driver just above her head, along with the IV drip control. I have the awful NG tube and the oxygen cannula in place.
I was very impressed with the post-operative pain management. When I had my hysterectomy 20 years ago I woke up feeling as if I’d been run over by a bus, and on the day after, when I was got out of bed, I was literally begging for mercy because I was suffering the worst pain I’d ever experienced in my life. I was also freezing cold and had to be wrapped in a space blanket, in shock after my surgery. This time, however, having been on a warm operating table with warm air being blown over me, I was not cold and therefore not stressed; all the analgesia was in place when I came round, and there was really very little pain. Things have improved so much.
For pressure management, I was put on an airflow mattress, and my bottom and heels were checked regularly; I also wore the white anti-embolism stockings known as TEDs (apparently standing for “Thrombo-Embolic Disease” which they are designed to prevent). These have a hole under the ball of the foot, so that the stocking can be pulled back in order to examine the heels without removing the stocking. I am still wearing them.
All of us on the ward had daily Fragmin injections (an anticoagulant to prevent blood clots) – this tiny subcutaneous injection in my upper thighs varied from being painless (only once or twice) to extremely painful – on one occasion I nearly hit the ceiling! – and most of the time stinging quite severely after it was injected. Once I made the bad mistake of rubbing the site, which made the pain ten times worse!! We had a French nurse on the ward called Sandrine, and she would come at us with the loaded syringe, saying, “Just a leetle bee steeng...” and none of us enjoyed that! I have to continue with this for 28 days after surgery, and the district nurse is calling each day to do it for me. I shall be very, very glad when that comes to an end.
My next diary entry will be about the end of my stay in hospital, when I actually had Fun!
Early April and Beyond...
Improvement, Fun and Coming Home
I am writing this on Tuesday 14th April, a week after my discharge from hospital. It is taking me a long time to catch up with blog updates, replying to all the wonderful messages I’ve had, etc.
On about Tuesday 3rd April, my hubby was feeling rather despondent about what he considered the slowness of my progress. I told him again what I’d warned him of before I went into hospital, that with my M.E. I was starting from a lower baseline than “normal” people and that it was bound to take a little longer. However, a day or two later he said it was remarkable how in the previous 48 hours, I had definitely turned a corner, was looking better, and starting to make progress. Here is a picture of me, taken on Day 9 (5th April) after the attachments had all been removed:
You can see how much better I look than on my previous photo! I have got my new bear, Mr. Rupert Pullan (named after my surgeon) – Rupert for short. Most sensible people have rescue cats and dogs, but my hubby rescues teddies from charity shops! He discovered Rupert and bought him for me.
I felt an awful lot better as one by one the various attachments were removed from my body – the best being the ghastly NG tube! Once that was out I could concentrate on trying to clear the congestion in my nose which had been driving me nuts. I was still on the oxygen which had rather a drying effect, but with the saline spray I always have with me, gradually the congestion started to clear, even if it did involve a nosebleed one evening!
Progress was made a couple of days after the catheter and drip were removed, and I was told that I no longer had to have my fluid intake/output monitored as they were satisfied that everything was functioning OK in that area. At about this time, coinciding with an improvement in my mobility and the ability to make it to and from the loo under my own steam, my blood pressure began to climb back up and the oxygen was removed.
I had a bit of a setback and felt rather poorly in an undefined sort of way one day, and during the night, happened to meet a nurse on my way to the loo and remarked that it was a pain having to get up so often to go. She asked if this was normal for me, and I said no; she immediately gave me a pan to pee in and said she would test it. In the morning it was revealed that I had a mild UTI (urinary tract infection) and was immediately put on a three-day course of antibiotics which sorted it out pretty speedily. It just goes to show that it is important to tell them everything, even if it seems trivial. What I had put down to a change in my system, perhaps post-op swelling pressing on my bladder, turned out to be something they could quickly deal with. Not having developed more severe and recognisable symptoms, it never occurred to me that I might have an infection.
On the Tuesday, two new ladies arrived on the ward at the same time – Sue (opposite me) and Elizabeth (opposite and by the window). They had both had bowel cancer like me, but in the absence of inflammatory bowel disease, they had had their tumours removed by keyhole surgery and an anastomosis performed (joining the cut ends together) so they were able to make a more rapid post-op recovery.
We soon found that we all got on very well together, and we had a lot of fun, calling ourselves “The Allerton Three.” Towards the end we were all about the same mobility-wise, and would sit with each other and chat. One day Elizabeth was standing by her bed with one pink slipper on, and a white-stockinged little toe was pointing delicately like a ballet dancer under her bed and we said, “What on earth are you doing?” – unable to bend down, she was trying to retrieve her other slipper from under the bed. It looked so funny and we all started laughing until my tummy hurt! The nurse came in at this point and said, “What’s going on in here?” and joined in the fun. On another occasion I was out of bed while they made up my bed, and when I got back in, I discovered that I was sinking – Sue said, “You are disappearing!!” and I suddenly found myself sitting on something extremely hard – the base of the bed! One of the nurses had inadvertently switched off the pump on my airflow mattress and I was gently and gracefully disappearing from view as it deflated, with my feet rising higher and higher. Sue said I reminded her of a TV advert she’d seen for crisps, with the man eating crisps in his hospital bed, and some kids coming in and operating the bed controls so that the head and foot of the bed came up like a Venus fly trap, scattering crisps everywhere, which the kids ran off with! This caused more laughter.
After this, the nurses started coming up to our bay (the end one on the large ward) for a bit of light relief! We all had such fun. One of them, called Cat, told us about the Bristol Stool Chart. I thought this must be a joke, but she assured us it was real. Here it is:
The very idea of someone poking around in different sorts of poo and going to the trouble of grading it is quite beyond belief! We were all in fits of laughter over this. Cat told us that one of the nurses had a mug with it on, and later he showed us. She then showed us a picture of a cake someone had made, with the Bristol Stool Chart depicted on the top in chocolate icing!!!
We were told that there was a builder working on the ceiling in the sluice a while back, and one day he looked down from his ladder and said to the nurse who came in bearing a pan full of poo, “I think that's about a Type 4, don’t you?” She said “What on earth do you know about that?” and he said that after a few days spent listening to the poo-obsessed nurses, he knew all about the Bristol Stool Chart!!!
It soon became clear that everybody on Allerton Ward (being the gut ward) was totally obsessed with poo. Sarah, our favourite HCA (Health Care Assistant – equivalent to the old State Enrolled Nurses) said that she lived and breathed poo, and that her hubby did indeed think she was really peculiar! She said, “I love poo...”
Whenever they came to do our obs, after taking our blood pressure, temperature and blood gases, they would always ask the same litany of questions, “Any nausea?... vomiting?... How’s your pain? Have you opened your bowels?” They kept asking me this and I said, “I would if I had any!” This caused momentary confusion and a quick cover-up when the question was rephrased, “How’s your stoma?” Lol! They wanted to grade my output according to the Bristol Stool Chart but being ileostomy output without the benefit of having passed through the colon, the scale really doesn’t apply – what they were looking for was a porridgy consistency!
On the Sunday, Sue was sent home and Elizabeth and I agreed that we were really going to miss her. Almost immediately after she’d gone, it was announced that the two of us were going to be transferred to the gynae ward because we were no longer acute and they needed the beds. We were told that the gynae ward was a lovely ward, all ladies (of course) and very quiet, and we’d get better nights down there. When we arrived, we found we’d been separated which was a bit of a blow. We agreed that we’d probably been sent down for bad behaviour, and our separation was part of the punishment, to keep us out of trouble!
That night I had a rotten night. I was put in a bed without an air mattress and the mattress was really hard and uncomfortable; it was much hotter down there and they insisted on drawing all the curtains around each cubicle overnight, although I did request that the curtains at the end of my bed be left open – I felt so closed in. I was amused in the morning that the breakfast toast was served in a toast rack! Obviously a much more select and posh level of accommodation than roughing it on Allerton, and I wondered who on earth I was going to talk to about poo, down there. It soon transpired that the nurses (and the patients!) were equally poo-obsessed so I felt right at home.
The two ladies next to me in the bay were both taking up bed space like me because of lack of availability of suitable beds elsewhere – both had seriously broken ankles and one was awaiting surgery as soon as the swelling had reduced sufficiently. They were both delightful, as were all the other ladies on the ward, and I soon felt more at home, but it lacked the fun atmosphere of Allerton ward, even though it was a lot quieter and with much less bustling activity by the staff. My special light diet meals also took longer to come, being away from a ward where special diets were de rigeur.
I was really ready to come home on the Sunday (Easter Sunday) but it appeared that over the weekend and bank holidays, the only people who appeared to be doing any work or showed their faces were the nurses! There was therefore nobody to discharge me. On the Tuesday I was able to see a junior doctor who declared me fit for discharge, and the physio who organised the provision of two Zimmer frames for me to take home (one for downstairs, one for upstairs). I also saw the stoma nurse who was all for bringing down a bag to keep my supplies in, but I dissuaded her, saying that I had been promised a choice, and was prepared to wait till my outpatient appointment. They filled the white box they give you in hospital so I had sufficient supplies to last till the outpatient appointment, and then began the long wait for my drugs to be sent up from the pharmacy. From the moment I was told I could go, to the moment my hubby and I left, it took six whole hours!! The wheels of the NHS certainly do grind exceedingly slow and small.
On previous occasions when I have been discharged from hospital I have felt very vulnerable and weepy. You quickly get institutionalised and very accustomed to having lovely caring nurses appearing when you press your call button, and you feel safe and secure, with lots of company and no decisions to make, and the thought of leaving the bubble and re-entering the Big Wide World is pretty alarming. However, this time, I was more than ready to go, and shed not a single tear. I also had something lovely to look forward to: the arrival that evening of one of my two best friends from school. She is a retired nurse (how many people are discharged home into the waiting arms of a private nurse lol!) and this year we have been friends for 50 years. We met at boarding school, aged 12 and have been firm friends ever since, and my hubby and I are Godparents to her younger daughter.
Alison was amazed over the coming days, how little actual physical/nursing help I needed; I pointed out that they don’t send you home till they are confident that you are as independent as possible. She was interested to witness a bag change; it is some time since she nursed stoma patients and remarked how things have moved on since those days. She was such a help to us both, cooking our meals and even doing some baking, and doing odd jobs around the house, generally giving my poor hubby a break, and allowing him to see that looking after me on his own during my convalescence was not going to be as arduous as he had feared, which gave him more confidence. I was able to rest (she encouraged me to rest in bed after lunch and to go up to bed early even if I didn’t want to sleep immediately) to give my body the chance to recover. As it happens, I do not have the strength to do much else! We had plenty of time to chat and laugh, and to reminisce and share all the things we always talk about. She had to go home on Sunday and despite all her hard work, said it had been like a holiday for her – she is very busy at home sharing duties with her sisters, caring for their elderly parents as well as having a busy life generally, with her hubby and one of her sons who is at present at home. I miss her! I said she must come and stay for a proper holiday as soon as I am well, and we can take her out and about and show her around the beautiful area in which we live.
Since my discharge, I have had the district nurse calling daily for my Fragmin injections (only 10 more to go...) and I have been enjoying my low fat diet and eating well, and dealing well with the stoma and bag.
Tuesday 14th April 2015
Convalescence, Stoma Clinic and Histology Results
Yesterday I had my first outpatient appointment in the stoma clinic, and saw Helen, one of the specialist stoma nurses. I told her that I had been having problems with some skin irritation in the immediate peristomal region. I believe this was due to the fact that I had cut the opening in one of the bags slightly too large. As the stoma shrinks during the healing period, it has reduced in size from 40 mm immediately post-operatively to about 32 mm, the current size. I had cut several at 35 mm and the last one I used at this size was a little too large, exposing a small ring of skin to stoma output which is very acidic and not at all skin friendly. When I realised what was happening, I applied a bag cut to 30 mm, which was just too small and probably not lying entirely flat against my skin, again allowing for leaks. The area has grown larger and more uncomfortable over several days. We phoned the stoma clinic last Friday and were told that it would keep till my appointment on Monday. Helen examined it, and applied some special powder, and then put on a mouldable ring which she stretched to the size of my stoma; she said these are impregnated with manuka honey which apparently has remarkable healing properties. She has given me a supply of these and some more powder, and told me to start changing the bag every two or three days rather than every day as I had originally been instructed to do, to allow the skin to rest and heal.
She brought in a choice of three different bags to carry supplies while out and about; the bags are supplied by the different supply companies, and the one you choose determines which company you end up dealing with. The bag I chose has lots of different zipped compartments and is produced by the only supplier which runs on a non-profit basis – PatientChoice – they plough their profits into charities supporting ostomy care and inflammatory bowel disease, and they also send unwanted ostomy supplies to the Third World. I think this is an admirable idea, and I’m glad I chose the bag from this supplier.
She gave me enough supplies to tide me over to my next outpatient appointment in a fortnight’s time.
She also told me to start introducing small amounts of fibre in my diet, in the form of fruit (apples, unripe bananas) and some vegetables; I am already having carrots and broccoli (florets only) and she suggested cauliflower (again, florets only – the stems are too fibrous for now). To be on a low residue diet for too long will make my system lazy!
Then Nita, one of the other stoma nurses, who is also a specialist colo-rectal nurse, came in with my histology results. Mr. Pullan had removed the whole of my large bowel and rectum, and the connective tissue and blood supply for the area, and all the regional lymph nodes (45 in total). Histological examination of these organs and tissues revealed that the tumour was Stage 3 (Duke’s C) which means that it had invaded all the layers of the colon wall, but had not metastasised to other organs (which would have been Stage 4) – this was confirmed by my earlier CT scan. The grade of the tumour, from 1 to 4, was unfortunately 4, the most aggressive and most susceptible to spreading; the cells had “poor differentiation” which meant that it would have been hard to differentiate between these and a cancer from a different organ; the cells were therefore highly abnormal and not recognisable as being colon wall cells. One of the 45 lymph nodes was shown to have been invaded by cancer cells. On the TNM scale (Tumour, Nodes, Metastases) it was therefore T3 N1 Mx. This was not as good news as I had hoped; it means that it will be necessary for me to be referred to an oncologist and undergo some chemotherapy.
However, Nita explained that the surgery was considered “curative,” and that the chemo should be seen as “belt and braces” – just making absolutely sure it had all been dealt with. She agreed with my understanding that this meant that if one rogue cell had escaped elsewhere in my body but was too small to show up on a scan, it could cause trouble in the future, and the chemo would deal with this before any problems could arise.
I am hoping that I shall have a single cycle of oral chemotherapy and not have to undergo intravenous therapy; I am hoping also that it will not make me feel unwell, if it is a low dose. Chemotherapy can affect the functioning of a stoma, altering the quality of the output, and I am already feeling quite unwell enough, and have been through enough, without any further discomfort. I should receive an appointment to see the oncologist in the next three weeks.
I am returning to the stoma clinic in a fortnight’s time, when they should be able to set me up with the supplier and start to get everything delivered to our door on a regular basis. This is set up as a free prescription service and the clinic will order what I need; all I have to do is notify the company when I’ve got about a fortnight’s supply left, and they will top me up regularly – I can do this by phone or online once I am registered with them. It should present no problems.
My follow-up appointment with Mr. Pullan is on 28th May, which will probably be just to check that everything is going OK and that I have healed up nicely.
Tuesday 5th May 2015
I had my appointment with the oncologist today, 5 1/2 weeks after my surgery to remove the whole of my large bowel and rectum and create an ileostomy. I had been told that the surgery was considered curative, but would need some chemotherapy afterwards as “belt and braces” to mop up any rogue cells which might still remain in my system.
The histological examination revealed that my cancer was Stage 3 (invaded through all layers of the bowel wall, and also into one lymph node) and was Grade 4 (most aggressive) and the MDT were surprised when it was discovered because at my previous colonoscopy 18 months earlier, there had been no trace of it.
The oncologist is Dr. Lo, a charming Chinese lady who immediately put us at our ease. Also present was a visiting consultant from Germany, who very politely asked if I was happy with him being there, which I was. There was also a nurse present in the background, and later the specialist colo-rectal nurse arrived, and gave me the additional stoma bags I had requested on the phone in the morning.
I had been hoping for a single cycle of oral chemo but instead I was told that it would be intravenously over the next SIX MONTHS!!! I was horrified when she told us that. She said the oral stuff isn’t suitable for me because it can cause coronary artery spasm in healthy individuals and since I had one of those last summer, and also have left bundle branch block, it’s a no-no for me.
So I am having oxaliplatin (Eloxatin) intravenously, every three weeks, for six months. This is far more radical than I’d hoped, or even imagined would happen. She said I could have this via a cannula in my hand, and I baulked at this, given my horrendous experiences in the hospital when they were digging around for a vein and the pain reduced me to tears! She said the alternative was better anyway – I shall have a PICC line (peripherally inserted central catheter) installed for the duration of the treatment, and the chemo and any other drugs will be administered through the cannula in the crook of my elbow, from which they will also be able to take blood.
Also, I won’t get any pain in my arm that I might have got if they’d injected it through a cannula in my hand.
The PICC line will have to be flushed every week and I can have the district nurse to do that for me. The treatment will be administered by drip over about a four hour period. I’ve been warned about side effects which will be cumulative over the course of the treatment, and which will be most severe during week 1, then diminishing during week 2 until I feel more myself again in week 3 (“So lots of treats in week 3 then,” said my hubby).
Side effects obviously vary between individuals, but most people experience extreme fatigue. The drug reduces the number of cells in one’s blood. A reduction in the number of white blood cells increases the risk of infection; in red blood cells, causes anaemia. Reduction in platelets causes the blood to clot less readily, leading to bleeding and bruising.
The drug can cause peripheral neuropathy (numbness and tingling in the hands and feet). This is a common side effect, and it can be triggered by cold. Fortunately I am starting my chemo as the weather is getting warmer (well, it should be, anyway!) but it is recommended that one wraps up warmly, paying particular attention to the hands and feet, and the mouth and nose, because it can affect the mouth as well, and very cold drinks should be avoided. When taking things from the freezer it is recommended that you wear gloves.
Nausea should not be a problem because an anti-emetic is prescribed with the chemo, and also anti-diarrhoea medications are prescribed.
Some people develop some rather unpleasant side effects such as laryngeal spasm, causing difficulty with swallowing and breathing, or soreness in the mouth and mouth ulcers, and one’s sense of taste can alter, but these are less common side effects. Hair loss does not usually occur but some thinning may be experienced.
It all sounds pretty unpleasant.
I had no idea this was going to have to be so radical or so long-lasting. My friend Shaz has told me about the side effects etc., so I am not completely unprepared. Still, it’s put the kybosh on the whole of the rest of the year, which I hadn’t been expecting, but my hubby said, “Better that than a funeral service.” How right he is.
As we left, my hubby took me into the chapel, which is just near the oncology department. It’s absolutely beautiful. All around the altar are lots and lots of little teddies given in memory of babies who had died, and this moved me so much. Thinking of that made me count my blessings, and realise that whatever I’ve got to face, it’s never going to be as bad as that. The chapel is such a beautiful sanctuary and I’m so glad we went in there before coming home.
I will get a phone call in the next 5 days calling me in again, when they will talk to me about my treatment, and (I assume) fit the PICC line and do my initial blood test. Then they will tell me when the treatment will begin, which will probably be the following week. I didn’t think it would be so soon as I’d assumed they’d wait until after I’d seen the surgeon on 28th May, but Dr. Lo said they usually start it about 6 weeks after surgery, once things have healed and settled down.
I keep reminding myself that we should be grateful for this offer of chemo, however unpleasant it might be, because it’s only temporary and gives us the peace of mind we need. It’s just that it’s a lot more radical than I’d anticipated, and the whole thing takes a bit of getting used to. They’ve given me loads of paperwork to look at, including some excellent Macmillan books and leaflets. I must say, the whole MDT setup at the hospital is second to none, and however much people may moan about the NHS, I for one have had quite excellent treatment and care and I can’t fault them. I know I’m in good hands, and I’m confident of a good outcome.
I just hope I stay the course and can put up with it all... I am still finding it quite hard to get my head around the idea that I’ve had cancer at all, and haven’t been able to think about that aspect much until now, because my brain has compartmentalised it all, allowing me to focus first on the surgery, then on managing the stoma.
It’s a bit frustrating to think that I shall be made to feel poorly again just when I feel I am picking up after my operation and thinking I would soon get my life back again, but I feel it’s still on hold and will be for some time now.
Wednesday 13th May 2015
Plans for Chemo
When we were out Monday there was a message for me to phone the hospital regarding my pre-chemo “chat” appointment. I got through yesterday morning to the oncology day centre, and they told me a letter would be in the post, but I was to come in next Monday morning, and at the end of that appointment, my PICC line would be installed. The chemo would then begin the following day. I said that I had had second thoughts about the PICC line, having had the opinions of various other people, and also having done my own research; I said I would prefer to have a port-a-cath instead. She said she could not discuss medical matters, but would ask the specialist chemotherapy nurse to phone me about it.
I eventually managed to speak to her this afternoon, and said that in view of the fact that this treatment wasn’t going to be over in a few short weeks, but would be going on for six months, I would prefer to have the port-a-cath which is embedded in the chest with nothing to show. There would be less risk of infection (especially as one’s immune system is compromised by the treatment anyway) and I was concerned about the catheter remaining in my arm for so long, with the tails exposed and coiled up under a dressing when not in use, particularly with the onset of the summer weather.
She said that in principle there were no objections to my choice, but she would have to consult Dr. Lo, the oncologist, for her opinion, after which she would phone back to let me know.
It is more complicated to install than the PICC line, and is not a nurse-directed procedure but would require a radiologist. This doctor does two of these per week, on a Friday, and they would have to see when his next available slot came up. If this goes ahead, I would have to attend the hospital first thing in the morning to have the procedure, and then the chemo would start straight away. This would mean one less visit to the hospital, but I would be in all day.
The port-a-cath is a port, a small implantable device which is inserted under the skin of the chest, with a silicone rubber membrane through which a needle can be inserted for the administration of medication and the withdrawal of blood. Attached to the port is a catheter which leads into the subclavian vein on the right-hand side of the chest, and then into the superior vena cava, the main vein leading into the heart. Introducing chemotherapy into the body in this way is preferable to the use of peripheral veins because of the toxicity of the drug which can cause damage to the more delicate tissue of the smaller vessels.
Obviously this is a more complicated procedure than the insertion of the PICC line, but it will make life a lot easier and more comfortable in the long run, and the port-a-cath requires less maintenance too, so I am hoping that Dr. Lo will raise no objections.
My appointment on Monday is going ahead as scheduled anyway, and I shall know in a day or two which delivery method I shall have for the chemotherapy.
Thursday 14th May 2015
Provisional Update on Appointments
The specialist chemotherapy nurse phoned me again this morning to say that Dr. Lo approves of my choice to have the port-a-cath instead of the PICC line, and it now remains to fix an appointment with the radiologist to have it installed.
He performs these procedures on Fridays, and provisionally I am booked for Friday 22nd May, but failing that, it will be the following Friday, 29th May (the day before my birthday...). Immediately after its installation I shall begin my chemo.
I need to turn up really early (8.30 a.m. – eek! That’s the middle of the night for Shoshi!) but I probably won’t be allowed any breakfast because I’ll need a sedative, so I’ll get a bit more time to sleep before I have to get up.
Before the procedure, they want me to have a pre-assessment appointment (like before my bowel surgery), and it is possible that I will have this as part of my pre-chemo “chat” appointment on Monday; if this doesn’t happen, she will try and schedule it for Thurs. 28th if the procedure is being delayed till the 29th, because we will be at the hospital anyway on that day, for my next stoma clinic appointment and also the follow-up appointment with Mr. Pullan, my surgeon.
I am very glad they have agreed to let me have this procedure. OK, it involves more hospital appointments and will be a more complicated procedure for me to have to undergo, necessitating sedation, but I think in the long run that will be a smaller price to pay than dealing with the inconvenience of the PICC for such a long time. It should require minimal maintenance, and nothing will show on the outside except for a small bump.
Updates when I get them.
Monday 18th May 2015
New Patient Talk
Today I attended the hospital for my “New Patient Talk” in the chemotherapy department. This is set up so that the specialist nurse (in my case Catherine) can talk you through what to expect, and to answer any questions. They give you plenty of time, and also provide you with a “Patient Held Record” which is a small plastic-covered book with all the details of your treatment, appointments, medications, contact numbers, side effects and what to do about them, etc.
First of all, she told us that the chemo would start this Friday (22nd May) after the installation of the port-a-cath. I have to turn up at 8 a.m. (even earlier than I’d thought!) and will have to have an anaesthetic for this procedure, which means no breakfast. By the time this is all done, I shall begin my first chemotherapy infusion at 12.30 p.m., and it will take four hours, so it’s going to be a long day at the hospital.
Before this happens, I have to have a pre-assessment appointment with Dr. Isaacs, the radiologist. He will assess my fitness for the anaesthetic (as happened before my bowel surgery) so that they are aware of any potential problems and be prepared to deal with them should they arise. This appointment is on Wednesday 20th May at 2 p.m., so we will have had three visits to the hospital this week! (Next week I’ve also got a stoma clinic appointment, and my follow-up appointment with the surgeon on Thursday.)
The chemotherapy sessions will take place every three weeks and will last four hours. The infusion will be introduced into my body via a small needle assembly straight into the port in my chest, through which they will also be able to take blood.
Blood needs to be taken regularly because the drug affects the production of blood cells by the bone marrow, and they need to keep an eye on the levels of red and white blood cells (particularly neutrophyls), and platelets. I could become anaemic, and my immune system will be compromised, and also I will be susceptible to bruising, and possibly nosebleeds and bleeding gums because low platelet levels will affect the normal clotting ability of my blood.
Forty-eight hours before each treatment I shall have blood taken by my local surgery. We are going to arrange for the district nurse to come and do this for me, and the chemotherapy department will give us a form to drop in to the surgery.
The drugs I shall be given are as follows. The chemotherapy itself is oxalyplatin (Eloxatin), and I shall also be given ondansetron (Zotran) and domperidrone (Motilium), both of which are anti-emetics (to prevent nausea and vomiting) – these will be in tablet form, the former to be taken one every twelve hours, 48 hours after treatment and the latter if required, one tablet three times a day.
I may also be given a steroid tablet for symptoms of nausea as well but hopefully this will not be needed as steroids to tend to pile the weight on!
The period when my immune system will be most compromised will be between days 5 and 15 in the three-week cycle, and it is very important that I avoid contact with any source of infection, for instance crowds where there might be colds. Minor occurrences which do not affect one in the normal course of events, such as cat scratches and other minor abrasions, and the consumption of dairy foods made from unpasteurised milk (e.g. brie – that’s a shame – I love the stuff!) and yoghurt containing live bacteria (again, I’m disappointed, because I was hoping to continue enjoying my Fage Total Greek yoghurt!), can quickly lead to major infections which can be serious, if not fatal, if not dealt with promptly. I’ve also been told to avoid honey (another shame – I love honey, and also use it for sweetening things) because there’s apparently a potential risk of botulism, and pasteurising honey does absolutely nothing to destroy any possible Clostridium botulinum spores, which pass through the gut of a normal, uncompromised system without harm.
I have been given some telephone numbers in case I should start to feel ill with flu-like symptoms (aching joints and muscles, headache, feeling generally unwell and feverish), and somebody will be available to take my call 24 hours a day. At the first sign of any such symptoms, I am to take my temperature, and to phone the hospital if it is raised about 37.5 deg. C. It is important not to take paracetamol because this merely masks the problem by lowering the temperature and reducing the symptoms, but the infection would still be there and it could be extremely serious. If the hospital think it is necessary for me to go in, they will prepare A&E for my arrival, and the policy of the hospital is for the problem to be dealt with within one hour of being called in, which shows how seriously they take this potential problem.
This is all pretty scary stuff...
Because the chemotherapy works by attacking fast-dividing cells, it not only attacks cancer cells but also other, normal cells in the body such as blood-producing cells in the bone marrow, and the cells inside one’s mouth. This can result in a sore mouth and possibly mouth ulcers. I have been provided with two different mouth washes to use. The first is Chlorhexidine gluconate, which I should use as part of my normal oral hygiene – the nurse suggested I clean my teeth three times a day, using a soft toothbrush, and to use the mouthwash after this.
Should I develop ulcers, she gave me another mouthwash to deal with the problem: Difflam Oral Rinse (Benzydamine hydrochloride).
Another very common side effect is peripheral neuropathy – numbness and tingling in the hands and feet, and this can also affect the mouth. The symptoms are triggered by contact with cold, so it is important to wear gloves when handling food from the fridge, for example. Drinking chilled drinks and eating ice cream can cause symptoms in the mouth, and moving from a warm environment into the fresh air can also trigger symptoms, notably trachaeal spasm which can be alarming as one becomes temporarily unable to breathe. The nurse recommended bringing a scarf to my treatments, to cover my nose and mouth when leaving the hospital, and going from the car to the house.
The hands and feet can become sore, and the skin very dry and even cracked if not looked after, so she recommended keeping them well moisturised. I was very amused when she produced a pot of cream with a cow-hide design on it, called “Udderly Smooth” – she said that it had originally been designed for the udders of cows, but farmers found that it was great for their skin too, so it is now used as a human skin moisturiser! As long as this whole experience doesn’t transform me into a cow, I shan’t mind!
I must also expect to feel extremely fatigued and somewhat hung-over, especially in the immediate aftermath of each treatment, and I will need to rest a lot – but then, I am used to that.
The nurse went on to discuss the psychological effects of all this, and said how normal it was to feel afraid and anxious. There is plenty of support available to help, and there is a psychologist on the staff to help should I need to learn coping strategies, but I think this is unlikely – I am a strong person and have made sure that I am as well-informed as possible (fear of the unknown is probably the worst), and my faith in Jesus has carried me through thus far and I don’t anticipate Him letting me down at this stage! I am so grateful for everybody literally around the world who continue to pray for me, and I feel carried along by a tide of answered prayer.
There is a separate building on the hospital campus called “The Lodge” for cancer support, and there is always someone there to talk to; they offer massages and other pamperings, and counselling and just a place to chat with fellow-patients, etc. They have a drop-in centre several days a week, or you can make scheduled appointments.
Talking of cows, when we arrived, we sat in the waiting area to the side of a wide corridor, from which led a couple of wide doorways into the treatment area. There were lots of recliner chairs in there, occupied by people connected to IV poles, and beside each one was another chair for use by relatives etc. It reminded me of a milking parlour – all the people patiently sitting while the machines did their stuff (OK, stuff was going in, not coming out – you can stretch analogies too far!) and I did think it was somewhat lacking in privacy! I had expected to be in a normal ward, on a bed, or perhaps in a treatment room. Every now and again someone would get up and walk to the loo, pushing their IV pole, and I thought to myself that that would be fun, using a wheelchair! I’d have to have someone to help me! The whole setup was a very strange spectacle, and made all the more so by the thought that in a few days’ time, I would be joining their ranks. The nurse said how important it was to drink plenty of fluids; tea and coffee facilities are laid on, and they provide lunch as well.
Over the next six months I am going to become very familiar with the chemotherapy day unit; the nurse said that since most chemotherapy is given on a three-weekly basis, I shall probably end up meeting the same people each time. She said it is scary to start with, but one soon becomes very accustomed to the routine, until sometimes patients actually remind the staff about things and correct them if they make any mistakes!!
We have come home armed with masses of information and stuff to use, and it’s all fairly overwhelming...
Wednesday 20th May 2015
Pre-Assessment Appointment for Port-a-Cath
Today I had the pre-assessment appointment in advance of the insertion of the port-a-cath on Friday. This device will allow the injection of chemotherapy and other drugs and also the extraction of blood. It will be inserted under a light general anaesthetic with local anaesthetic being administered to the incision sites, and the procedure should take around an hour to complete.
This is more hassle than the insertion of a PICC line but in the long run it is going to be a lot less hassle to manage during the course of my treatment, so I think it is worth it. I was pleased that they agreed to my choice to have this done.
The device will be embedded in my chest with nothing to show on the outside except a small lump.
The specialist radiology nurse did the bulk of the interview, and it was a very thorough checklist indeed - more thorough than the pre-assessment before my operation, actually. She covered every area of my health, and said she would like me to have a blood test for INR (International Normalised Ratio - a determination of prothrombin levels which indicates the clotting properties of the blood) and also an ECG, for which she gave us the forms and told us to attend the heart and lung unit at the end of the appointment - you just hand in the forms and wait your turn.
She also gave me details of fasting prior to the procedure, and where to turn up at 8 a.m. on Friday – at the Ricky Grant Day Unit where the chemotherapy takes place, and after the admission process, I will be taken down to theatre for the port-a-cath to be inserted. She said she would be present during the procedure.
By the time she had finished, it was lunch time, and she said we had time to get ourselves something to eat before returning to see Dr. Isaacs, the radiologist, for the final part of the appointment. He went into more detail about the exact nature of the procedure.
He will make a small incision (approx. 5 mm) at the base of my neck on the right hand side after the administration of local anaesthetic, and under ultrasound guidance, access will be gained to the internal jugular vein.
Another, larger incision will be made below this, on the right side of the chest, about 3 cm long, also with local anaesthetic, and a pocket formed, into which the port will be inserted against the chest wall.
The catheter is fed through the small incision until it ultimately reaches the superior vena cava, the main vein leading into the right atrium of the heart, and then a small tunnel is made under the skin, for the other end of the catheter to be attached to the port. The correct positioning is determined by means of X-ray, which is why this procedure is carried out by a radiologist.
The two incisions are closed with dissolvable sutures and covered with a small dressing.
Dr. Isaacs said that as I was having my first chemotherapy infusion at 12.30 p.m., he would insert the needle assembly so that it was ready, to save them doing this just before the treatment begins.
I will be sent back to the Ricky Grant Unit to recover, and then my treatment will begin at 12.30 p.m. It will take four hours, and they will keep me there for a further half an hour just to make sure I don’t have any sort of reaction, before I will be allowed to go home. A long day at the hospital!
Dr. Isaacs had a port-a-cath with him, which he showed us. It is quite a small device (about 1/2 in across and about 1/4 in thick) attached to a long, thin, flexible line marked off in centimetres. The top surface is covered with a transparent silicone rubber membrane through which a needle can be injected many times without damaging it, and which “heals” after the needle is removed. This membrane felt a lot tougher and harder than I’d anticipated – having made silicone rubber moulds I had thought it might feel quite soft and thin, but it has to withstand quite a lot, and needs to be secure. Blood can also be extracted through this membrane.
Compared with the PICC line, it is maintenance-free between treatments. The PICC would have required weekly flushing with heparinised saline (Hepsal) (to prevent blood clotting in the line) but with the port-a-cath, this need only be done at the time of each treatment. With nothing to show on the outside but a small lump after the incisions have healed, it can be treated normally and doesn’t need to be kept dry – showering and other normal activities can take place in the usual way.
I will have had three hospital appointments this week! Then two more next week, but at least they are on the same day! There is now a well-worn path between home and hospital and I am beginning to wonder whether to take a sleeping bag and find a corner in which to doss down. This would save on petrol and all the hassle of parking each time.
Two days of wellness remaining till it all begins. I’m feeling so much better after my operation and keen to pick up the threads of my life again and now I shall have to put up with feeling poorly once more, but it’s all in a good cause!
Friday 22nd May 2015
Installation of Port-a-cath and First Chemotherapy Cycle
We arrived at the Ricky Grant Day Unit at 8 a.m. as arranged, and I was booked in for my procedure, with the usual lengthy form filling and Q&A sessions. I was given a hospital gown and told to strip my top half only, and put this gown on with the opening down the front. Very fetching. Then I went down to theatre on a trolley. There is a special theatre devoted to interventional radiology, where a radiologist performs minimally-invasive surgical procedures under X-ray guidance, accompanied by the usual anaesthetist and theatre staff. I was wheeled into the small anteroom which acted as an airlock and again was reminded of space travel – when I had my CT scan I imagined I was going through the stargate as per the TV series - the devices looked so similar! In this case, I was certainly going into outer space, or at least, being spaced out. They gave me a paper hat to wear, and then they went through the forms and Q&A again, and when I got into the theatre proper, they asked a lot of the same questions again, which amused me greatly – did they think that I would somehow be substituted for another patient during my passage through the door? Lol! I am not complaining – it is very reassuring that they are so thorough. Gone are the days that they cut off the wrong leg, or worse, the leg off the wrong patient!!!
While still in the airlock I was surprised when they ran through the checklist and said “two port-a-caths...” I said, “Two?” They said one was a back-up, in case they dropped one! It was a lot easier to start with two unopened packs, rather than having to search the hospital for another one if they had a mishap. I thought they could always drop me, if they dropped it, and then everything would be fine.
The theatre itself was amazing, with huge X-ray machines suspended from the ceiling and what looked like a vast wide-screen TV. (Shame I was going to be asleep for the duration and would miss all my favourite programmes.) One of the staff said not to worry – they knew it all looked rather intimidating, but I said not at all, I was fascinated.
They slid me onto the operating table and prepped me for surgery. Dr. Isaacs, the radiologist, carried out a brief ultrasound scan on my neck to locate the correct veins and expressed himself satisfied that I had “lovely veins” – how reassuring to know that!! This would show him where to make the first incision to insert the catheter. They placed an oxygen mask over my face. The insertion of the cannula into my left hand was again an extremely painful experience, as it had been when I was an inpatient, causing me to cry out for the whole duration of the procedure. After it was done, they said they would give me a little local anaesthetic, and I said what a shame they didn’t do that beforehand! I was told that the injection of the local would have been as painful as the cannula... Then a little antibiotic, and finally the anaesthetic.
I came round in the recovery ward, and my first conscious thought was, “Oh no... I forgot to set my alarm and I’ve overslept and missed my appointment!”
I was told that all had gone well. I felt very shaky and shivery for a while and was given oxygen through the mask I still had on, but this eventually passed once they got me back on Ricky Grant. I was given a nice cup of tea and allowed to recover for a while. The whole procedure took most of the morning, and I was given a Snack Pack with some delicious sandwiches for lunch, and more tea, and then the chemo began.
Because I’d had a surgical procedure, I was on the treatment couch for the whole time – it was a lot more comfortable than I would have been in a chair, and at the end I requested this for each treatment, especially as I often have a rest in the afternoon and with my M.E., being able to lie down more or less horizontally is a lot more comfortable and restful for me. They said that would be fine, as long as there was a spare couch – there may be others who have had a surgical procedure like me, or there may be emergency admissions of patients with chemotherapy-induced neutropenia (severe infection as a result of low levels of white blood cells).
When the port-a-cath was installed, Dr. Isaacs also inserted a gripper needle – the special hook-shaped needle used to access the port, shaped like this to anchor it securely, so it was all ready to go.
The first thing to be done was to flush out the port with saline, and a little negative pressure drew some blood back into the syringe, indicating that everything was functioning properly. After this I was given a dose of anti-emetic medication and a small dose of steroid – I said I’d prefer not to have steroids because they do tend to pile on the weight, but she said this was only a small dose, and I’d also be having only a minimal dose of dexamethasone orally at home, for a very limited period, and it would not have this effect. Its benefit is to help prevent nausea, to maintain appetite which can be diminished during chemotherapy, and also to give one a feeling of wellbeing to counteract the unpleasantness of the chemotherapy. I would also have some ondansetron (anti-emetic) orally for a couple of days at home.
Because saline is not compatible with oxaliplatin, the chemotherapy drug I am receiving, the latter is given in conjunction with glucose. Before beginning the chemotherapy, the port was again flushed, this time with glucose, and then the oxaliplatin was given – the bag contained approximately half a litre which surprised me – I had no idea I would be receiving so much, but of course it is in dilute form.
All these infusions take place through a single line into the port. The various bags on the drip trolley each have their own individual lines complete with a clamp to open and close them, and these connect into the single line, looking something like the branches of a tree. This is a very efficient system and enables them to change the substance being infused without interfering with the port or gripper needle at all, which is more comfortable for the patient, and reduces the risk of infection. It was quite hypnotic, watching the drip-drip-drip and seeing the level going down, and watching the countdown on the display. As it came to the end, I was reminded of the countdown on Ebay and you are on tenterhooks, wondering if you’ve won your bid, or whether someone will sneak in and beat you at the last second!
During the infusion I needed to go to the loo, which was an interesting experience. Because I needed to use my wheelchair which requires two hands, I had to have another hand to bring my IV pole (the machine operates in battery mode when unplugged from the wall). My hubby did this for me, and it was all I could do to make him walk slowly and keep an eye on where I was behind him so that he didn’t pull out the connections!! (He’s never been big on spatial awareness, I’m afraid...) If I were to go any faster I’d have been in danger of ramming the back of his legs! The disabled loo we used was plenty large enough for one person and a wheelchair, but it was distinctly cramped with two people, a wheelchair and an IV pole! Later my hubby did some recon and discovered a disabled loo of palatial proportions at the end of the corridor with room for all this, and the swinging of several felines besides. (NOT that I am in the habit of indulging in this latter practice, I hasten to add.)
The infusion was supposed to take four hours, but when the machine had finished its countdown there was still some oxaliplatin in the bag, so the machine was set up again, and twice more, until they were satisfied I’d had every last drop! They kept squeezing the contents down to the bottom of the bag, and I was reminded of the process of emptying my stoma bag. The whole process took about four and a half hours not counting the various flushings, and then the port was again flushed with glucose, and a final flush of Hepsal (heparin and saline) – the heparin acts as an anticoagulant to prevent blood clotting in the port or catheter. With a PICC line, this flushing has to take place every week, necessitating a visit from the district nurse or an appointment at one’s GP surgery, but the port-a-cath is low maintenance, being completely embedded under the skin, and only requiring flushing at each treatment, which was one of the reasons I was so keen to have it.
During the whole of the treatment I felt no ill effects. I was very tired and needed to rest – a combination of an early start and a long day, and the effects of the surgical procedure. I dozed for part of the time. My lovely hubby stayed with me throughout, despite my protestations that it really wasn’t necessary and that I was in good hands, but he felt better about staying, at least for this first time.
Forty-eight hours before each treatment I will need to have blood tests to check my blood count which is affected by the chemotherapy. Unfortunately the district nurse is not permitted to take bloods through the port, so I have to go back to the Ricky Grant Unit to have this done each time, so it’s another trip to the hospital for my poor hubby! He is being so good about it all.
Because the surgery had only just been done when the treatment began, there was some bleeding from the incision over the port, so when the treatment was finished, they removed the dressing (using some of the adhesive remover spray from my emergency stoma kit!) and a fresh, temporary dressing applied. I have to go back tomorrow morning for this to be removed, the wound checked and cleaned, and a new dressing applied. The small incision at the base of my neck is fine and doesn’t need touching. They will also flush the port at the same time.
When I was first checked in at Ricky Grant, the anaesthetist came to see me, and gave me a very nice little pack to accompany the port-a-cath.
It was fastened closed with a Velcro dot, and included a checklist, an identification card, a user manual and a wrist band.
The checklist and card.
The card has my basic details on the back. I have to keep it with me at all times, and present it to any clinician who is to perform any venous procedure (taking blood, the injection of contrast medium for scans, etc.). They also gave one to my hubby.
The user manual, containing details of the port and its installation, how it is used, and the risks associated with it.
A nice touch was the cool wrist band also included – gorgeous colour, and I love the gradation of light to dark! As well as being a great fashion accessory, it also serves to alert the emergency teams should I be involved in an accident.
After being given the “Udderly sMOOth” moisturising cream at my New Patient Talk appointment, I ordered some white cotton gloves and socks to wear at night, to enable the moisturiser to work efficiently and without making my bedding or clothing greasy. I got these on Amazon and they were very cheap.
Having been warned about the problems with peripheral neuropathy, I did some online research to see if there was anything I could do to minimise this unpleasant side-effect, and found these gloves with silver incorporated into their fabric. Their primary use is for Reynaud’s and scleroderma but also listed is chemotherapy-induced peripheral neuropathy, and there were plenty of positive reviews, so I ordered some.
(Lump is the dressing where the cannula was.) I am pleased to say that all these products had arrived by the time I got home this evening, because by the time I went upstairs to the bathroom prior to eating, the neuropathy had begun – I tried laying my hand on the cold tiles of my bathroom counter and immediately withdrew my hand as it felt as if it had been electrocuted!! A sharp, buzzing pain. Very unpleasant. Not what I had expected – I thought I might get a little tingling and numbness!
I put the silver gloves on straight away and have been wearing them all evening. They are a soft fine knit and very comfortable, and I have not yet encountered any activity that they prevent me from doing, including operating the computer. My hands do feel warm, but not excessively so, and they are certainly not sweating. I am highly delighted with the gloves and feel confident that I can touch what I like now with no ill effects. I shall take them in to the Ricky Grant Unit and show the staff, because their other patients might be very glad to know they are available, as this is a very common side effect – so much so that it is really to be expected with oxaliplatin.
I bought two pairs of each of all these products so I can have one on, one in the wash. They should see me through the duration of the treatment.
When I started to eat my supper, the first mouthful caused an unpleasant painful sensation as if my salivary glands were inflamed – I remember this feeling as a child when I had mumps – but when I ate some more the feeling had gone. Dr. Lo, the oncologist, warned me of this side effect which is a spasm of the jaw. What I experienced was obviously a mild form of this, and as I accumulate more of the drug in my system, I think I can expect this to become worse. I am not very happy about this because it was listed as a “possible” side effect that most people do not get.
So, my first cycle is complete. One down, about 10 more to go!! Each one I have done is one less to do, but I am aware that with the effects of the drug being cumulative over time, I am likely to feel increasingly unwell as time goes on. At least the first one was not too bad at all, and I have taken steps to deal with the unpleasant side effects, and I have the ondansetron and dexamethasone tablets to take to counteract any feelings of nausea in the first couple of days after each cycle. I was also given some domperidrone as an adjunct for this symptom should it persist – I can take these as and when I need them, three times a day, but the nurse explained that many people never need to take them. I was also prescribed some paracetamol to relieve the post-operative pain around the port-a-cath. They are certainly looking after me!
My next cycle will be on Friday 12th June, also at 12.3o p.m.
Saturday 23rd May 2015
Port Dressing Changed
We went back to the Ricky Grant Unit this morning to have the dressing over the port-a-cath wound changed. It bled a bit during the treatment yesterday and they put on a temporary dressing.
This is how it looks now.
The top picture shows both wounds. The top wound is where the catheter was inserted into the internal jugular vein and threaded down into the superior vena cava, the main vein which enters the right atrium of the heart. The bottom, larger wound (also illustrated below) is where the pocket was created for the insertion of the port itself, which rests against the chest wall. There is only a small lump to indicate where the port is, just above the wound. Dr. Isaacs created a tunnel between the two, and under X-ray guidance, pulled the other end of the catheter through this and connected it to the port. It is all healing nicely, and the scars should be virtually invisible eventually.
I was given a tiny tube of Ametop (tetracaine), a local anaesthetic gel, which has to be kept in the fridge.
Half an hour before my next treatment I have to squeeze the whole of the contents into a mound onto the top of the port and cover it with a clear dressing which she also provided, without rubbing it in, and it will soak into the skin and numb it, ready for the insertion of the gripper needle. The effects should last several hours. Over time, scar tissue will develop over the site, rendering it less sensitive, and the Ametop may no longer be needed for future treatments.
I wish they had applied some of this to my hand before inserting the cannula just before I had my anaesthetic on Friday!
I told them about the silver gloves and the nurse was very interested, and made a note of the website, and said she would tell the rest of the team. I said that since peripheral neuropathy is such a common side-effect of oxaliplatin, we ought to be able to get these gloves on prescription! They are fairly pricey but so far I have not regretted a single penny! They are brilliant.
All day I was feeling pretty good. OK, the peripheral neuropathy was bad and I had to keep the gloves on, and I got the awful jaw sensation when I started eating, but apart from that, no real problems. I do not expect to continue to feel this good with subsequent treatments because the effects are cumulative.
Sunday 24th May 2015
Not Feeling Too Good Today
When I woke this morning I felt slightly nauseous and this hadn’t improved by lunch time. I decided to look online for a ginger smoothie recipe and came up with this:
I substituted 2 dates for the honey as I have been told to keep off honey in case of infection. I used green tea – I made up a bottle of this the other day which I keep in the fridge, and simply heated some up to make this a nice warm drink. I also used cocoa powder instead of cacao as I don’t yet have any of the latter – cacao is better because it is produced by cold-pressing the cocoa beans, whereas cocoa is cacao that has been heated to a high temperature, thus losing some of the goodness. Cacao is now on my list of ingredients to get! This elixir (like a smoothie but slightly more liquid) contains ginger which is good for nausea and it also said it was immune boosting, and it certainly contains some good stuff! It was also delicious.
My hubby did manage to persuade me to eat a small portion of lunch and then I went to sleep for a while – feeling really wiped out.
I was delighted when I got up this morning, to discover that the peripheral neuropathy had disappeared, but when I started to make my smoothie it came back again, so I’ve got the gloves on again. I also noticed a slight diminution in fine motor skills, making typing difficult, but this has improved.
I am a bit disappointed to feel so rough today because I felt really good yesterday and thought after the first treatment that it wouldn’t be so bad after all. My hubby said he’d had a word with the nurse yesterday and she said I might not feel so hot on Day 3 – I suppose it's all starting to filter through my system now. I think the fatigue is probably a result of one’s body trying to respond to the damage and destruction caused to normal tissue by the chemo – one always feels exhausted during an infection or after injury or surgery as the body’s energy is expended in the work of repair. I am hoping to feel better tomorrow, and to notice some improvement during the next week to ten days. It would nice to be feeling well again before my next treatment.
Thursday 28th May 2015
Follow-Up Appointment with Surgeon
This morning I had my follow-up appointment with Mr. Pullan, the surgeon who performed my operation to remove my large bowel and create the ileostomy. He is pleased with how everything has gone. I asked him about my rectal stump which he says is very short. I wanted to know if it was normal to be continuing to produce such large quantities of mucus from it – it is not every day but every two or three days I keep feeling the need to poo, and can feel it come away into the loo. He said it was quite normal, and it could take months to clear up completely, and that this process would be hindered by the chemo. It’s not a major problem for me – more of a slight irritation, but I am reassured that all is normal, and there isn’t anything going on that I should worry about.
He said he and Dr. Lo, the oncologist, would be “leapfrogging” as far as my future appointments were concerned – they would be consulting regularly about me and how I was getting on, and keeping an eye on me between them. Over the coming months and years I shall have a series of CT scans to make sure that the cancer has not returned anywhere else in my body.
We discussed the effects of the chemo a little, and he commiserated with me over this, and said how good Dr. Lo was at assessing statistics and the pros and cons of having chemo after surgery to remove a cancer like mine. I agreed that it was a good thing and that it would give me the best chance of getting over this completely in the long run, however unpleasant it might be for the next six months.
Although the side effects from the chemo have diminished somewhat as the week has gone on, I am feeling far from well. The episodes of nausea have gone, but the peripheral neuropathy is still lurking around, causing me to be careful when handling cold things – preparing some strawberries straight from the fridge tonight set it off, but touching normally cold things like my bathroom tiles or metal door handles is not setting it off now. Food tends to be pretty tasteless and my appetite is poor. The worst part is feeling totally wiped out and needing lots of rest and sleep during the day and this makes me feel very unwell. I am not sleeping well because Kermit, my stoma, is being affected by the chemo and producing a lot more output, which is runny and gassy, and last night I was up twice during the night emptying the bag. I was told this would happen and I am taking loperamide (Immodium) and eating marshmallows to try and thicken things up a bit, and taking rehydration drinks.
I had an appointment with the stoma nurse this morning too, and I will be updating my Gutless Bag Lady blog with details of that.
Over the bank holiday weekend my stairlift broke down (some timing!) and I have been having problems dealing with the company who are so unbusinesslike and unreliable! I am trapped, because only they can repair it – none of the local firms will touch it – and they keep promising things they don’t follow through on, and they keep passing me from pillar to post, saying I shouldn’t have phoned this number and I need that number, then to be told that that number is wrong! They promised to come out on Tuesday but when nobody came by 3 p.m. I phoned again and they said “Who told you someone would come today?” They then informed me they couldn’t come till Friday! The man had the gall to say that because the problem was intermittent, it was not deemed urgent! I said that as far as I was concerned, the stairlift was not working if it was not reliable - I can’t get stuck half way, so I can’t use it! The stairs are bad enough with my normal M.E., but with chemo exhaustion overlaid on top, they have turned into Mt. Everest. I am keeping my emergency stoma kit downstairs so at least I can empty the bag in the downstairs loo, and not have to keep going up to do it, and I am restricting the number of times I have to use the stairs as much as possible. The downstairs loo is inconvenient because it is small and narrow, with no basin, and the pan itself is smaller, giving little room for bag emptying. To change the bag I have to use my bathroom where all my kit is, and where I’ve got the basin and plenty of room to lay things out. However, I only have to change the bag every three days as it is drainable.
I am not sure whether this is a side effect of the chemo, but over the past couple of days I’ve felt quite down emotionally, and a bit weepy and vulnerable. It may just be everything I’ve been through recently (and the problems with the stairlift), and general exhaustion, and also the thought of this going on for the next six months, now I’ve had a taste of just how poorly the treatment can make one feel.
Thursday 4th June 2015
Appointment with Oncologist
Today I went to see Dr. Lo, the oncologist. As I expected, this was just to discuss the various side effects I’d been experiencing since my first chemo treatment, and how severe they were. She said that they can be cumulative, especially the peripheral neuropathy, which I can expect to be more severe and to last for longer each time, which isn’t very good news. However, she said I should monitor it carefully, and if it became too severe, they could knock back the dose a little.
I showed her my special silver gloves and she was very interested in those, noting down the website from the wrapper. She said perhaps they should have these on the unit! I agreed that that would be a very good idea.
She wants to see me again in four weeks’ time, and suggested that perhaps the unit would be prepared to take blood from me on the Thursday instead of the Wednesday before my treatment when I was due to see her – unfortunately she doesn’t do a clinic on Wednesdays – if they would allow me to do this, it would save us a trip to the hospital. She wants to see me before each treatment initially, and then depending how I get on, maybe before every other treatment.
My next appointment is therefore on Thursday 3rd July, just before my next-but-one treatment.
A week to go till my next treatment. I am happy to report that the peripheral neuropathy and the jaw pain are pretty well gone now, and my food is tasting normal again. The output from Kermit, my stoma, is now much more back to normal – not so plentiful, and a thicker consistency, so I have stopped taking the loperamide. However, my energy levels are extremely low and I run out of energy very rapidly. I often feel the need to go to sleep at odd times during the day, often in the middle of doing something! Spending any time away from the recliner, especially if I’m on my feet, is making my back ache badly – the fatigue seems to hit me there more than in my legs these days, which is something new.
I mentioned to Dr. Lo the extraordinary thing that is happening to Beatrice, our older cat – having been told that my chemo isn’t going to make me lose my hair, she seems to be losing hers instead! My hubby took her to the vet, who said that her skin looked clean and free of irritation; she is not over-grooming or scratching, and when the vet asked my hubby if anything major had changed in the house recently, he explained that I had started chemotherapy that week, and she said that was the cause of it! Beatrice is a sensitive little soul and picks things up quickly, unlike Phoebe who’s my little Devon Dumpling and who continues as normal throughout any difficulties (with the exception of invasions from foreign cats into her territory, which makes her pee on the landing carpet, hence the need for a litter tray indoors). The vet says Beatrice is suffering from psychogenic alopecia. She started losing hair from her back legs this year, and we realise that it coincided with my illness, and after I came out of hospital she wouldn’t come near me for several weeks. Eventually she came around, but since my first chemo treatment she’s given me a wide berth again, and the loss of fur has now spread to some patches on her sides. The poor little thing is looking a fright – she’s always been so fluffy and soft and it’s very sad to see her in this state. We are glad that at least the weather is warmer now so she’s not going to feel it quite so much.
Please see my regular blog for details of gifts received and to give, to provide a little joy and comfort during the rigours of chemo! So important to encourage the feel-good factor during this period as it really helps one through the tough times. Nice to be able to spread a bit of love to others!
Saturday 13th June 2015
2nd Chemo Treatment
It’s been a few days since I updated this diary. I went in to the Ricky Grant Day Unit on Wednesday for blood to be taken through my port, in advance of my treatment yesterday. I had spread the tube of Ametop local anaesthetic cream onto the skin over the port just before we left home, and had a dreadful job getting the dressing to stick on it – I tried applying another one over the top and that didn’t stick too well either, because the stuff kept leaking out the sides. At the hospital the nurse told me to use half a tube next time, and to put the dressing on vertically rather than horizontally, and this certainly worked better when I did it yesterday.
The nurse had an assistant with her who she was keen to train in the technique of taking blood from a port – she had never done it before, and since this was my first time too, I was a bit nervous about it, but agreed in the end when I was reassured that she had had adequate training and had witnessed the procedure several times. She got the needle in OK, and it stung a bit despite the local anaesthetic, but she failed to withdraw any blood. At this point the nurse took over and reinserted the needle and took the blood so quickly that I was shocked when she said, “All done!” (I’m such a wimp with needles that I always look away!) It didn’t hurt at all that time. She said it can be quite tricky because you have to get the needle right in the centre of the port where there’s a slight depression, and the port does tend to wander about a bit, which means you have to grasp it quite firmly and exert some pressure – despite the nurse’s warning, this was not uncomfortable at all.
The bloods would be sent off to the lab in plenty of time to ascertain whether my chemo dose needed to be adjusted.
Off to the RGDU again yesterday at lunch time for my second chemo dose. My hubby dropped me off and didn’t come up this time – I said there was no point trying to find a parking space. Things are difficult at the hospital now because the main entrance is closed because of major building works as they construct a new ICU, and we have to use Outpatients main entrance and the parking, always difficult, is now worse! I’d just got the geography of the place sorted from the main entrance, but from OP it’s a rabbit warren! I had to go in that way on Wednesday because my hubby had brought a friend in to the diabetic eye clinic and after his treatment he can’t drive, so we went up together and my hubby dropped him off after we’d finished. Yesterday, though, he dropped me off by the chapel which is very close to Ricky Grant.
I went armed with a basket of my little lavender sachets in their boxes – I’d managed to make 16 and hoped that would be enough – it turned out to be exactly right, and everybody was so thrilled and loved what I’d done. The receptionist and all the nurses thought they were gorgeous too and were overwhelmed that I’d thought of doing this! I certainly wasn’t expecting such a good reception. They helped me distribute them too, because once I’m connected up I am no longer independent because I need two hands to propel my wheelchair and can’t push the IV pole as well.
This time I sat in the treatment room rather than on a couch as there were no couches available, and anyway I was feeling a lot better than last time, when I was still recovering from the general anaesthetic from when my port was installed. I sat in my wheelchair to start with, but after an hour or so I started to feel very tired and my ankles were starting to swell, so after a visit to the loo, I sat on a recliner chair (not uncomfortable, but not as soft as my one at home!).
I felt OK until about the last hour of the four hours’ treatment, when I started to notice that my thumbs were getting a bit numb. I soon started to lose control over my fingers and my throat felt odd, and I couldn’t speak very clearly, and as the final hour went on, I started to feel quite poorly and really wiped out. I didn’t feel bad on my first treatment until I got home. Dr. Lo did warn me that I should expect to feel considerably worse this time around. I was aware that the effects are cumulative.
When we got home I went straight to bed and my hubby brought me some supper on a tray – I was actually very hungry because I’d eaten very little all day. When I arrived I was expecting a lunch box like on the first occasion, and when nothing was forthcoming, at 1.30 I asked if I could have some food, and they said that they only gave lunch boxes to people who were there for six hours. Nobody had told me this, so they found some sandwiches for me in the fridge. Next time I shall have to go armed with sandwiches.
I slept on and off for most of the evening, feeling very poorly and shaky. I am still suffering from the shakes as I type this, and am having to go back constantly to correct typos – my hands feel as if they don’t really belong to me! The peripheral neuropathy is a lot more severe than last time, too. So far I haven’t felt sick, apart from a slightly unsettled feeling in my stomach this morning, but as before, they have given me some Ondansetron for the relief of nausea, and some Dexamethasone (steroid) to be taken for a couple of days, and I’ve got Domperidone anti-sickness to take when necessary thereafter.
After sleeping for much of the evening, I didn’t have a good night, but I’m up now and feeling OK if I don’t try and do anything!
Tuesday 17th June 2015
Aftermath of Second Chemo Session
I am definitely not doing so well after my second chemo treatment as I did after the first. The oncologist warned me that the effects of the second treatment were likely to be more severe, and she was right.
I have been feeling extremely poorly, very exhausted and feeling generally ill, with no appetite. The peripheral neuropathy is starting to pass off, more rapidly this time, which is good, but the other symptoms have been worse. Last night I could not eat any supper and felt pretty nauseous, and was sick when I went up to bed, so today I’ve been dosing myself with domperidone to keep the nausea at bay. I didn’t get up until lunch time, and have spent the rest of the day on the recliner resting, quite unable to do anything, so I’m not even trying! Better to ride the wave, go with the flow and hope it will pass (which I know it will).
The output from my stoma is as it was after the first treatment – much larger quantity, and extremely liquid. I normally cope with dealing with bag emptying etc. very well and am not fazed by it, but after chemo it seems really to revolt me and I find it hard to deal with. It may be because my stomach is feeling slightly unsettled. I had to get up two or three times in the night last night, in order to empty the bag. It is very unpleasant.
I have been able to eat very little today, but my dear hubby has prepared appetising small meals for me; for supper tonight he cooked some chicken thighs with barbecue sauce, and he served me with one (they are very small), with a tiny baked potato and a small serving of broccoli, all on a smaller plate so it looked like a proper dinner, and looked appetising! He also bought me some little tubs of rice pudding which he has warmed for me – these slip down easily and are very pleasant. I have no doubt that my appetite will return in a day or two but it’s horrible not wanting food, and then having it taste horrible when one does eat it! My sense of taste is definitely off, with food being tasteless without the addition of a lot of salt, and I also have a rather unpleasant taste in my mouth for much of the time.
At the moment I am not able to do anything creative or practical, but I shall start making some more gifts for my fellow chemo-ites as soon as I feel well enough. Meantime, I’ve started some very simple knitting (a scarf knitted in the round) which is so mindless that I can pick it up and do a few stitches if I feel like it.
All this will pass, I know. I just have to put up with it until it does. I am grateful for this treatment, however unpleasant it may be, because I know that it is mopping up any rogue cancer cells that might still be wandering about in my system, and with each treatment I have, it’s one less to have, and by November it will all be over and I can look forward to a cancer-free life – and the start of a new year full of promise! I have a lot to be thankful for.
Thursday 2nd July 2015
I had my pre-chemo appointment with the oncologist this morning, following my vampire’s appointment at the Ricky Grant Day Unit, which didn’t go too well! The nurse first attempted it using a small gripper needle, and while she was able to flush out the port-a-cath with Hepsal with no problem, the blood simply would not flow... She called a colleague, who tried with a large sized needle and I certainly felt that go in! Again, easy flushing but no blood. She got me to tip my head right back and slightly to the left, to stretch things out, and also to cough, but still nothing, and I was starting to get pretty uncomfortable in that position! She then suggested that I got on the couch and she would lay me down so I was flat, and would try again with a medium-sized needle. Not so bad inserting that one, and just when I thought things were really going pear-shaped and the port was failing or worse, the blood started to flow just fine! So all was well. Her colleague came back in again, and they agreed they would make a note of the size of needle to use, and also to get me lying down.
I can well understand why the practice nurse at the surgery, or the district nurse, cannot extract bloods from the port and I have to go to the hospital for this. It requires special training which the regular nurses have not had. It’s a bit of a pain because it means an extra trip to the hospital and I’m very conscious of my poor hubby being obliged to take this trip so often on my behalf, but at least they are happy for it to happen on the same day as my oncology appointment, so we can kill two birds with one stone.
I picked up another tube of local anaesthetic ready for prepping the skin over the port prior to my chemo tomorrow, and we set off for Oncology.
Today I saw Dr. Claire Dyke, Dr. Lo’s registrar. I told her exactly how I’d been during the last three weeks, and that I could feel the effects of the chemo when there was still an hour of infusion to go. All the side effects had been more severe, and longer lasting, and it was only a couple of days ago that I started feeling well enough to do anything other than lying on the recliner. She had a quick word with Dr. Lo and reported back that they would reduce tomorrow’s dose by 10 percent. The dosage is calculated according to body weight, but every individual is different and some people are more sensitive to the treatment than others, and it’s only by trial and error that they can get it right. I am hoping that this will make a big difference to how I feel after tomorrow’s treatment.
I asked whether the infusion would be more dilute, or the treatment time would be shorter; she said it would be a smaller amount, but the treatment would last the same four hours.
They had planned on postponing my next oncology appointment until the treatment after next, but in view of my adverse reaction last time, they have made another appointment for me in three weeks’ time, the day before my fourth treatment.
I asked Dr. Dyke if they knew how many treatments I would be having. All I had been told was that it would be every three weeks for six months, and the number of treatments would therefore depend on when they decided to stop them. She said it would be a total of 8 treatments, which I was delighted to hear! I had calculated at least 9 or 10! It’s very good to know that a definite end is in sight, and after my next treatment in three weeks’ time, I will be half way through! That doesn’t sound so bad. Later I worked it out that the final treatment should be on 16th October, which is a lot better than the mid- to end of November that I had been expecting.
In view of the fact that the nausea was so bad after the last treatment, Dr. Dyke said I could double the domperidone dose, and she gave me a prescription for this, and for some more loperamide to help with the over-production of very runny output from Kermit, my stoma.
More news after tomorrow’s treatment.
Saturday 4th July 2015
Third Chemo Treatment
Yesterday I had my third chemo treatment. When they again inserted the needle into the port in order to connect me up for the infusions, the nurse was getting a good back-flow of blood, and said that the flushings I had had the day before, and now, seemed to have resolved the problem.
The treatment proceeded as before, and again, despite the lower dose, I started to feel the effects during the last hour of infusion, and by the time they had finished with the final flush, I was feeling quite poorly. It wasn’t as bad as last time in that I didn’t have to take to my bed on our return home, and I managed to eat a small supper.
The peripheral neuropathy is bad again, so I have been wearing my gloves ever since the treatment ended yesterday. My hubby has been warming all my food and drink as well – even at room temperature it is giving me the feeling of swallowing sand. This should pass off in a few days.
Last night I gave up typing on the computer as a bad job. My hands were seized up and felt as if they belonged to someone else, making typing well nigh impossible, with so many typos that I had to be correcting every word at least once! I left it off till this afternoon, and when I started it was just as bad, but my hands gradually loosened up and my typo level is now more or less back to normal!
This morning I didn’t get up very early but rested half the morning in bed. When I got up I felt so much better that I was able to spend an hour or two in my studio.
Towards lunch time I suddenly caved in with exhaustion and feeling shaky, and I also felt rather nauseous, so I came down and took a single dose of domperidone – I didn’t want to overdo this because I was already taking my twice-daily dose of ondansetron. After a very light lunch I felt a lot better. I have been resting on the recliner all afternoon watching TV and DVDs, and catching up with my emails etc.
Generally speaking, I have already started feeling a lot better than immediately after the second treatment, so hopefully I shall have a much more productive three weeks this time! I am also feeling much more upbeat because the effects do seem to be less severe than last time. However, some effects take a few days to develop, and things can change very rapidly, so I am trying to enjoy the “ups” and be ready for the “downs” when they come, and trying not to worry too much about the future.
Thursday 23rd July 2015
Doing Better This Time
After a week of feeling poorly following treatment #3, I picked up during the second week and have had a pretty good fortnight all told, and have been able to do some art, which is great. I did think to begin with that reducing the dose by 10 percent wasn’t making any difference as I felt very poorly during week 1, but the effects passed off very much more quickly, and I can certainly live with that.
I went in to the Ricky Grant Day Unit today to have bloods taken through the port again, as usual before each treatment. This time, the port behaved perfectly and the blood flowed just fine, with me lying on the couch and them using the 1-inch (medium sized) gripper needle.
After this we went down to the Oncology Department and again saw Dr. Dyke, the registrar – Dr. Lo was apparently away on a conference. Next time I have to see her on the Monday so that will mean 3 visits to the hospital in one week! My poor hubby...
She asked how I’d been since the last treatment and I was able to report that after the first week, things had improved no end. She said they would keep the dose the same for tomorrow’s treatment, but if I was affected badly, they have a little leeway and can reduce it again for the next one if necessary.
I am very impressed with how much they listen to what one has to say. We were talking generally about different effects and I mentioned the mucous discharge I have from my rectal stump – Mr. Pullan had told me that this would go on possibly for many months. I have read that sometimes it never clears up; mucus is produced naturally in the colon and rectum and helps lubricate the passage of the stools, and it is absorbed by the stool and passes out naturally without one being aware of it, but in the absence of stool after the colon and most of the rectum have been removed, it can build up and be hard to pass because one cannot “bear down” in the normal way. If it accumulates and becomes hard, it can cause problems, and can also get rather smelly and unpleasant. The chemo certainly makes this problem worse. It is not there every day but I can feel quite uncomfortable with a severe ache in what remains of my back passage, and the urge to “go” and most times nothing comes out.
I mentioned to Dr. Dyke that I’d read that glycerine suppositories can help, and what did she think? She said she had not come across this problem before and asked when I was seeing Mr. Pullan again, but I wasn’t sure that I was going to see him again. I mentioned that I had a stoma nurse’s appointment next month and she suggested I discuss it with her. She then said she could phone her straight away if it would help, and she did! She came back to say that the nurse had suggested a medication called Micralax, which comes in 5 cc doses in a little squeezy sachet with a long flexible tube which you insert into your back passage. Dr. Dyke gave me a prescription for this and I have to use it twice a week. It should take between 5 and 15 minutes to work, and should dissolve the discharge, allowing it to flow away easily.
I am very impressed with the trouble Dr. Dyke took over this, phoning the nurse and arranging it all, and taking the problem seriously. If I hadn’t mentioned it, they wouldn’t have known and I’d have struggled on.
When I was waiting to have my blood taken this a.m. I got in conversation with a lovely lady who was just starting her first chemo, and I said to her that she must tell them absolutely everything about how she feels, and what effects she gets, even if it seems trivial or silly to her, or embarrassing – if they know about it, there is often something they can do to help that we are not aware of. We all have a tendency to “soldier on” and not make a fuss, but this isn’t a very good idea, and we need to realise that we don’t have to be heroes, and that they are all there to help us through this ordeal, and to make it the least unpleasant it can be.
When we got back home I was quite tired and needed to rest for most of the afternoon, but after that I was able to work on some art projects which I need to finish by a certain date. I am hoping to be able to do some more tomorrow. My treatment is a bit later than usual, starting at 1.15 p.m. so hopefully there will be some time in the morning to achieve something.
After tomorrow’s treatment, I will be half way through! That is a milestone! It occurred to me during this cycle that this whole thing is like a game of snakes and ladders. With each treatment one slides down a very long and very slippery snake, and then spends the next three weeks climbing up a long ladder, only to be confronted with another snake at the end of it! I know I SHALL win this game, though, and I am progressing gradually through the board. It’s a pity it’s not the game where you collect £200, though!!
More news after tomorrow if I feel up to it.
Sunday 26th July 2015
Fourth Chemo Treatment – The Half-Way Mark!
On Friday I went for my fourth chemo treatment. This is quite a milestone because it marks the half-way mark of my treatment. The light is definitely brighter at the end of the tunnel, and it’s nice to know that I only have four more snakes to slide down, and four more ladders to climb – the final one hopefully being the long climb up to a cancer-free life! From now on I think the time will pass more quickly as the end rapidly approaches.
I had been told to come in at 1.15 p.m. for my treatment, which was later than my usual 12.30 appointment. On Friday morning I was still in bed and my hubby had not yet brought me my breakfast and the phone went, and they asked if I could come in at 10.15 a.m. instead – the reason for this was that if I came in at 1.15 p.m. my treatment would run on too late, and they officially shut up shop at 6 p.m. I can’t imagine why they hadn’t thought of this before – they could have told me the previous day! I know how long it takes me to get ready and I knew there wasn’t enough time, and that we would be late, so I didn’t panic. We were only 5 minutes late but by that time somebody else had taken that slot and I had to wait for ages! I could have had another hour in bed... All day the unit was incredibly busy.
My hubby had an appointment at 4 p.m. which he couldn’t avoid. If I’d gone in as originally planned, this wouldn’t have been a problem, but after my treatment was finished around 4 p.m. I then had to wait till after 5.30 for him to pick me up. I therefore spent the whole day at the hospital and was unable to do anything else!
They have scheduled my next appointment for 10 a.m. which is fine, because if I know in advance that I have to be up early, I can be. I shall be home earlier, but of course feeling the effects of the chemo so the later part of the day will be useless as far as doing anything is concerned. I’d much rather go in the afternoon so I’ve got the morning free to do things, especially as I am likely to be feeling at my best right at the end of the three-week cycle. Still, it can’t be helped.
On Thursday I was given another MRSA swab kit – I was given one of these last time, and apparently it will happen every time now - new hospital policy.
There are three tubes each containing a stick with a cotton swab on the end and you have to take a sample from inside your nose, your throat, and your groin. They give you a small vial of saline to moisten the swab for the groin where the skin is drier. I handed this over, having done it before leaving home, and then they attempted to insert the gripper needle into my port – this time not so successful because they were using a smaller needle, and when I pointed out that I usually had the 2.5 cm/1 in one, they located one, and there was no problem after that. They flushed the port with saline, and then I was ready to go into the treatment area. They gave me the infusion of glucose and anti-nausea medication as normal, and then the chemo.
Like last time, I felt the effects during the final hour of treatment and felt pretty poorly. After they disconnected me, and I was waiting for my hubby, one of the nurses approached me and apologised profusely that they had forgotten to do my final flush – they can’t leave the glucose floating around and I should have had the Hepsal flush to get rid of this. They re-injected a fresh gripper needle into the port and did the flush with a syringe. No problem, except it hurt a bit more than usual because it was without the benefit of the Ametop local anaesthetic.
I felt really poorly all evening and I had a very early night and as a result, didn’t sleep well, and ended up reading and dozing occasionally from 3 a.m. onwards. Last night I also went to bed much earlier than usual, and again, woke in the early hours (4 a.m.) and had to spend most of the rest of the night reading!
Yesterday I felt quite a lot better, as I do today, and was able to do quite a few things, including spending some time in my studio.
Last time I crashed on the Monday and felt awful for the rest of the first week. I am hoping this won’t happen this time. However, I’ve been thinking about the reasons why I may have felt better initially and then felt the effects more severely – for the first couple of days I am on steroids and these are known to have a boosting effect and put you on a bit of a high. Once the effects wear off, it is likely that I will come down and feel worse.
Anyway I am hoping not to feel too poorly throughout the coming three weeks. I have a lot to do and am looking forward to working on several art projects.
Wednesday 29th July 2015
Progress After Treatment #4
After seeing Dr. Dyke (the oncology registrar) last Thursday, and being prescribed with the Micralax mini-enemas, I had to phone the stoma nurse on Monday because I had tried them twice and both times they really hurt... The first time I tried sitting on the loo and squirting the stuff upwards, and the second time lying on the bed and doing it sideways. It wasn’t the physical act of shoving in the tube which is pretty thin and soft, but I felt it immediately afterwards – it seemed to be the stuff itself. I determined both times to try and keep it in for at least 10 mins to do its work but both times had to give up and return to the loo after only 3 or 4 mins and get rid of it.
The stoma nurse said it was quite normal for it to be a bit painful – a sort of ache and a desire to bear down, but in my case she said it did sound as if the pain was more severe than normal. She said it may be a bit tender inside and recommended I left it off for the week, so I shan’t try again until Sunday.
I have an appointment with her on 17th August and we will discuss the problem further then. She said if I am still experiencing the same problems, it may be better in my case for me to have some glycerine suppositories which are more gentle. This is what I originally suggested to Dr. Dyke. We shall see.
Following on from Friday’s treatment, the weekend was quite good and I am sure that the steroids do make one feel better for the first couple of days while one is still taking them. From Monday I started to feel bad again and am not having that good a week. I am able to do a little in the mornings but after a small amount of effort, am completely flattened again and need to rest. I am experiencing the horrible taste in my mouth, and even water tastes horrible again, and the peripheral neuropathy is continuing to be a major pain, necessitating the wearing of gloves (sometimes 2 pairs if I am touching anything even slightly colder than I am). I am getting it in my feet as well, even through socks and slippers. The only way to deal with it is to keep very warm. After handling anything too cool, it helps to put my hands into hot water for a few minutes, dry them well and get the gloves back on pronto!
Last night I slept badly, with bad dreams (possibly more M.E.-related than chemo) and not helped by the fact that I was so wiped out yesterday evening that I spent the evening on the recliner asleep. I was trying to watch a DVD and slept through most of it – I kept rewinding and trying to remain awake, without success!
Nausea-wise, not too bad. I am taking the double dose of domperidone and it does seem to be working. It’s very bitter to take. Amazing that 2 such tiny pills can fill one’s mouth with bitterness! It is better taken with tea or juice than water. In any case, all drinks have to be warmed as I am still suffering the effects of “drinking sand” if I have even room-temperature drinks.
I am not pushing things this week. Just going with the flow and resting when I need to, and pottering in the studio or doing odd bits and pieces that have to be done (like this a.m. – changing the sheets on the bed, hair washing, some hand-washing) – this wipes me out by the time I’ve finished and so it’s rest, rest, rest for the remainder of the day. No point hassling – one just has to ride the tide and know that things will improve eventually.
I am hoping to feel better again next week.
Wednesday 12th August 2015
Lots of Appointments This Week
My oncologist is going away this week, so I had to have my appointment on Monday rather than the usual Thursday. I have to go in to the Ricky Grant Day Unit for my bloods on Thursday, and then my 5th chemo on Friday, and next Monday (17th) I have my scheduled stoma clinic appointment. My poor hubby – he is my taxi service to the hospital and he’s wearing a track in the road on my behalf!
The oncology appointment went well. I described, as usual, how I’d been since my last treatment, leaving nothing out. I think my hubby considered that I was moaning about it because he kept chipping in with remarks such as “Well, it’s a good thing if it’s going to get rid of the cancer,” and “I think you’re doing very well,” etc. Eventually I said that it was important for me to be honest about how things were, because if I don’t tell them, they won’t know, and quite often there is something that can be done to improve things, at which Dr. Lo nodded vigorously! I told her how impressed I was with how Dr. Dyke, at my last appointment, didn’t just listen to what I had to say about mucous discharge, but actually did something about it straight away and phoned the stoma nurse and wrote me a prescription for the Micralax. I also told Dr. Lo what my school friend (a 10-year breast cancer survivor and a retired nurse) said: “There are no heroes here!” telling me to let them know absolutely everything and not try to be stoical and suffer in silence – she said to take absolutely everything they gave me, and to be vocal! Again, Dr. Lo nodded, and they both laughed at the hero reference!
My hubby hates me to make a fuss about anything because it makes him feel uncomfortable. He needs to understand that this is not complaining, but explaining. While I really appreciate his support and the fact that he has been with me for every appointment and I really don’t know what I’d do without him, sometimes he is a little too eager to be helpful and the “help” turns out to be a hindrance! I don’t want to make him feel uncomfortable, but at the end of the day, these appointments, treatments, surgery, tests, etc. etc. are about me, and they are my journey, not his, and I have to be allowed to deal with them in my own way, regardless of his tenderer feelings!! I need to be able to answer the professionals’ questions in my own words without him chipping in and trying to be helpful, too. I know he means well and is doing his best, and if this is the only problem I’ve had to contend with, I’ve got very little to make a fuss about at the end of the day.
I described to Dr. Lo how after the last two treatments, I’d felt pretty poorly on the Friday evening, but over Saturday and Sunday, I had picked up considerably and thought I was going to get away with it this time, only to feel progressively worse over the next few days, feeling at my absolute worst on the Wednesday. Thinking about it, I said, the only explanation I could come up with was that perhaps the steroids they sent me home with were giving me a short-lived boost over the weekend, and after taking the final tablet on the Monday morning, I had crashed – she agreed with this assessment and suggested that they give me the steroids for a few days more, tailing them off more gradually, so as to avoid the crash. I said I thought that was a good idea as long as I wasn’t going to be on them for too long because I wanted to avoid the side effects associated with them. She said that in the short term like this, there was no danger of that.
Having told them previously about the nausea problems, I was able to report that the double dose of domperidone had really helped – another instance where letting them know had resulted in positive action. I asked for some more domperidone and loperamide, and she gave me a prescription, and we went on our way.
Last week we went to the Lodge, which is the Cancer Support Centre in the grounds of the hospital, run by Macmillan’s, so that I could attend the first relaxation session – I met up with the other two members of the Allerton Three – the two ladies I became friends with when we were all on Allerton Ward together in hospital – we are going to attend these together. Unfortunately the room where it took place was upstairs and there was no lift, but there was a stairlift which I used, but had to leave the wheelchair downstairs. To begin with, we sat on some pretty uncomfortable chairs. I had no crutches so others had to carry my stuff upstairs and I had to take someone’s arm to get into the room, but I did manage to get myself down onto the floor (and up again lol!) for the session. They provided thin rubber mats to lie on, and a rolled up blanket for our heads, but it was very uncomfortable and the floor was extremely hard! Next time I’m going to have to make better provisions for myself, I think, although I have no idea what, short of taking my bed or my recliner and I think my hubby might draw the line at that!! Anyway, the amazing thing was that by the time I was “in the zone” and fully relaxed, I scarcely felt the hard floor any more. It was amazing. We all enjoyed it, and we had some good feedback afterwards.
Beforehand, the lady leading the session had discussed the importance of relaxation, and that many people found it positively energising, which is something we could all do with when on chemo which makes one feel so exhausted. In correspondence with one of my friends also on chemo afterwards, I said that the way to deal with exhaustion is not to allow oneself to become frustrated with it, because this is a form of fighting the fatigue, which is the worst thing you can do. Frustration is a very exhausting activity in itself. If we can be as relaxed as possible, to accept and even embrace the fatigue as just part of the journey, and take a laid back attitude to everything we are going through, it all becomes a lot easier. Guided relaxation is a good way to deal with this. I have had plenty of practice at this, having had M.E. for nearly 9 years, and dealing with fatigue is a daily task for me. I never thought I’d be grateful for that experience, but I think it is much harder for people who have been living a full and active life before being struck with cancer and having to face the ravages of chemo – they find it a huge shock to the system and have no training or experience in the management of fatigue. We talked about this a bit with the leader of the relaxation group and she agreed with me when I said that I thought fatigue was the poor relation as far as symptoms were concerned – of any condition of which it is a symptom – she said that it is only recently that the professionals have even acknowledged the problems of chemo-induced fatigue. Unless anyone has experienced genuine, pathological fatigue, which is totally different from the “feeling a bit tired” experienced by fit and healthy people when they’ve been doing a lot, and which is relieved by a good night’s sleep, they really have absolutely no idea what it is like, and how totally devastating it can be. This is one of the main problems experienced by sufferers from M.E. when dealing with health professionals who are not trained in the management of the condition – this profound exhaustion tends to be poo-pooed and sidelined and one is often made to feel as if one is making a fuss about nothing, and that it is “all in your head.”
For the past ten days I have been feeling pretty good. This is about half the cycle, and I can put up with that. The oncologist said I was doing pretty well on the 90 percent dose of oxaliplatin, and we still had a bit of leeway if I wanted it decreased again, but I said I’d rather leave that option for the moment in case the time came that the side effects were so cumulative that I wasn’t tolerating them so well. In a month it might be different, but I can put up with the level of effects at present, especially if they do not last much longer than the first week, and especially if the additional steroids help me tolerate them better.
During my “well” times I have been able to be in my studio working on projects. I tend to be better in the mornings and take advantage of this time. Later I feel too tired to do anything much, and spend the rest of the days resting, sleeping, being on the laptop, watching TV etc. and just generally going with the flow. I have not been out at all, apart from the session at the Lodge, and hospital appointments. I am looking forward to having the opportunity to go out on my buggy again before long, especially as I have just completed some art projects with a deadline which have been taking up most of my “well” time. I think my hubby may take me out for lunch tomorrow after my bloods, and we can have a bit of an outing – let’s hope the weather remains fine!
My next appointment in the Oncology Dept. will be with Dr. Dyke, Dr. Lo’s registrar, again. I told Dr. Lo that I was very happy with this, and how nice I thought Dr. Dyke was (she agreed), and how impressed I was that she’d gone the extra mile for me. All in all, I have been more than happy with all the care that I have received.
Friday 14th August 2015
Fifth Chemo Treatment
My hubby dropped me off this morning for chemo #5. The appointment was at 10.40 a.m. which was rather early – they said they like to start the oxaliplatin treatments early because they take 4 hours to infuse. However, my first treatments were at 12.30 p.m. and that suited everybody fine, and while I was one of the last to finish, it was before 6 p.m. when they close. The disadvantage of early appointments is threefold.
- 1. I find it hard enough to get up in the mornings and like to have a leisurely breakfast in bed, and then when I am up, some time in my studio while my energy levels are at their best. I can get up if I have to but later appointments would be more helpful.
- 2. Having it mid-morning messes up my whole day. I do not have any time to take advantage of feeling at my best at the end of the cycle – a couple of hours in the studio would only be possible on a treatment day if the appointment is at lunch time. Also, starting earlier means finishing earlier too, but the time afterwards is spent feeling really poorly, whatever time of day it finishes. I may have more hours post-treatment than pre-treatment with an earlier appointment, but if I am feeling poorly, it is a waste because I can’t do anything anyway.
- 3. It is not good from my hubby’s point of view. He has to take me there and then pick me up. If he has to do this mid-morning and mid-afternoon, both sessions are broken up and he can’t do anything else. If the appointment is at lunch time, he gets a free morning and a free afternoon (with me being collected later) in which to do his own thing. He does so much for me and it would be nice for him to have these extra sessions to go out, or to work in his garage or in the garden, and take his mind off my health problems for a short while!!
I had a word with the nurse about this this morning and they have made the next appointment for 12 noon on 4th September. This is certainly an improvement but it does mean we have to leave the house at 11.30 which is a bit early from my hubby’s point of view if he wants a clear morning. When he picks me up he phones through to see when I’ll be ready, and that is usually around tea time, giving him a clear afternoon.
When I arrived, they flushed the port as usual, and got me connected up. Again, absolutely no pain as the gripper needle went in. I think the combination of the Ametop local anaesthetic cream, together with repeated needle jabs into the port site causing some scar tissue to develop which reduces sensitivity, is really helping. There was no problem with the port today, and the nurse said, “This is the only time we like the patient to be a little bleeder” lol! – as a small flow of blood as they pull the syringe back proves that the port is functioning properly. They can then flush it out with saline and get me connected up to the IV pole and wheel me into the treatment room.
It was quite a good day today, with some nice people to chat to, and I also did some of my knitting, and I did some puzzles and listened to my iPod too, and ate the nice sandwiches my hubby had made for me.
Yesterday when I went in for my bloods, I sought out Liz, a nurse who I had had a conversation with last time about the Royal Engineers. Both her hubby and her daughter are in this branch of the British Army and absolutely love it. I told her that my grandfather had served with them in WWI and she was very interested in that. When I got home I had a rummage in my button box and found the Royal Engineers buttons that I’d inherited from Grandpa along with all his other buttons which had just got mixed up with my existing collection – there were quite a few and I knew I could spare a couple, so I put them in a little bag and yesterday I gave them to her. She was overwhelmed and so thrilled! She said I had made her day, and I replied that her response had made my day! She said her husband and daughter would absolutely love them. I told her about the large album I am making about my dad’s life, and that I had nearly finished the Ancestry page which included bits about Grandpa in WWI, and she said she’d love to see it.
I took it in today, and later on when she had a free moment, she sat with me and I showed it to her. She absolutely loved it, and I showed her the button that I had incorporated in the page. She said her hubby’s response to the button was overwhelming – he is going to make a display of his medals and is going to put my button in with them! She said he pointed out (which I hadn’t really thought about) that those buttons are now 100 years old. Grandpa volunteered at the start of WWI in 1914. I offered to email her the photos of him in his uniform and she was thrilled.
She said, looking at the photos of him (and I had quite a few of him, his siblings and his parents) that she could see that I had exactly the same facial bone structure! I said I’d never really thought about that, but always thought Dad looked like him, and I look like Dad, so I suppose it figures! Looking more carefully at my great-grandfather’s photos, I could see that his forehead and nose were identical to Dad’s. Liz went and fetched a photo of her mum when she was young in the 1950s and her smile was identical to Liz’s. Fashions, hairstyles and photography may change with the generations, but genetics don’t. It’s fascinating to see these family resemblances going on through the generations.
This was such a lovely upbeat conversation and before I knew it, my treatment was nearly over! I did start to feel rather poorly again during the final hour, and felt dreadful by the time my hubby came for me, and I’ve been resting on the recliner all evening since. Fortunately this time my hands have not seized up so I have been able to type, hence my updating this page tonight rather than tomorrow or later.
I’m back in to the Ricky Grant Unit on Thurs. 3rd Sept. for my bloods, and then treatment #6 the following day, Friday 4th Sept. After that, I will be three-quarters of the way through! I can’t believe I’ve already had 5 of the 8 – this is real progress, and the time is flying by, which means that my final one on 16th October will probably be here before we know it.
Now I’ve just got to go with the flow for the next 10 days, see if the extended steroid dose helps, and concentrate on climbing the ladder to face the next snake on 4th Sept.
Monday 17th August 2015
My Final Scheduled Stoma Clinic Appointment
For full details of this, please see today’s post on my Gutless Bag Lady blog.
I had a stoma nurse appointment this a.m. and she was very impressed with how well the operation wound and Kermit have healed up, and how clean and healthy the peristomal skin looked. Because I am doing so well, she hasn’t scheduled another appointment unless I have any problems.
In a previous entry on this page you can read about the problems I’ve had with mucous discharge from my rectal stump since my surgery, and how the oncologist dealt with it, prescribing the Micralax mini-enemas. These have not proved a great success, generating a lot of pain. Today the stoma nurse gave me some glycerine suppositories to try instead, which are more gentle and shouldn’t be so painful. The discharge doesn’t seem to be so bad at the moment. I do find that the discharge comes in waves – for a couple of weeks or so it’s a real problem, then it seems to disappear for a bit, only to return. It’s very unpredictable, but the chemo does make it worse. I shall be trying the suppositories when it returns again. The nurse said that if I get on OK with them, I can get them on prescription via my GP.
The stoma nurse was impressed with how well I am, despite the chemo, and how well I am coping. We chatted about attitude, and how being positive, upbeat, keeping a sense of humour, and thinking of others, all help one enormously. I have every expectation that I am going to beat the cancer completely and make a good recovery from all the illness and trauma of this year. I said to her that it has changed me, and hopefully made me a better person, and I have learnt so much, and made so many new friends around the world, and unpleasant as much of the procedure has been, given my time again, I would not change a thing. I never, never thought I could ever say such a thing but it is really true. My life has been incredibly enriched through this experience.
The stoma nurse loved my hair! I told her I’ve started telling people it’s a side effect of the chemo lol! I’m waiting for someone to say, “What are you on? Can I have some?” Hahaha!!
Friday 21st August 2015
A Week On from Treatment No. 5
It is now a week on from my last chemo. They increased the steroid dose last time in the hope of avoiding the mid-week “crash” I have experienced before, but unfortunately I am feeling worse this time than before. I haven’t noticed any difference at all after the increased steroids. I shall naturally tell the oncologist about this next time I see her – that will be on Thurs. 3rd Sept., the day before my next treatment. I was told there was still some leeway and they can still reduce the chemo if necessary. The peripheral neuropathy at least isn’t quite so bad this time, which is a bonus.
The main effect has been devastating fatigue and a general feeling of unwellness. No nausea – the doubled dose of domperidone has sorted that, thank goodness. Just generally feeling totally horrible! I have a horrible taste in my mouth and my sense of taste is definitely off, and I can’t keep awake at odd times of the day. I am behaving like a cat at the moment and just sleeping when I feel like it. Most of this seems to be during the day unfortunately, because if there’s one thing I hate, it’s lying awake in bed at about 4 a.m.!! I am too tired to concentrate on reading, and if I listen to an audiobook on my iPod, that can send me off to sleep but then I lose my place in the book!
I do not have much appetite. My hubby has been looking after me very well, providing me with small, appetising and tasty meals but I’m not enjoying food much at the moment. All I’ve been able to do during the day, between sleeps, is be on the laptop and surf the net and watch art videos... That’s been enjoyable at least.
One thing I have discovered for sure, about “first bite syndrome” – that weird effect of oxaliplatin (the chemo I am on) where you get a severe sharp pain in the region of your mandibular joint when you first start eating. I’d been warned about this, the oncologist telling me it was like a muscle spasm. It certainly brings one up short and one can’t go on chewing for a few seconds! When it first happened to me, after the first treatment, I was instantly taken back to when I was a small child and had mumps – I remember eating a tangerine and experiencing exactly the same excruciating pain in that area – the salivary glands were inflamed and the sudden outpouring of saliva was extremely painful. I mentioned this to the oncologist on one occasion. This time, a day or two after my treatment, I was reading a sad bit in my book and started to cry, and was shocked that as the tears started to flow, my eyes became extremely painful! I think this bears out that this weird effect is glandular, not muscular!
I know that this will pass in time, and I have to continue to remind myself to go with the flow and it will get better. Chemo is the pits, but unfortunately it’s necessary!! Life takes some strange twists and turns sometimes, and it’s amazing to find oneself in a position of voluntarily submitting to such a thing! Nobody is forcing me to do this, and at any time I could run for the hills, but that wouldn’t be a very sensible decision, would it. There are plenty of people a lot worse off than me, so I have to stop moaning, grin and bear it, count my blessings, and soldier on.
To return to my early visualisation about joining the boot camp and then advancing into the battle, I have been thinking about the war going on in my body at the moment. In every war there are casualties, on the winning side as well as the losing side. Sacrifices have to be made in order for victory to be won, and the establishment and preservation of a better way of life for one’s nation, and dealing with the dastardly enemy in an appropriate fashion so that he cannot return and wreak further havoc in the future! My normal cells are taking a beating from the cytotoxic chemicals coursing through my system and they are rebelling, but the casualty lists are being monitored by headquarters, and appropriate strategic manoeuvres are being undertaken in order to reduce the casualties to a minimum while still exacting sufficient damage on the enemy in order to defeat him.
As they always used to say, in both World Wars, “It’ll all be over by Christmas.” I am sure in my case that that will be so!
As in the aftermath of any war, repairs have to be made, rationing may continue for some time, and individuals have to learn to tighten their belts and make many personal sacrifices until a state of normality can be resumed; the general population has to deal with the consequences of huge amounts of resources having been devoted entirely to the defeat of the enemy, at the expense of the national economy and the prosperity of the people. These things take time to recover, and a concerted effort. The effort involved on my part will involve continuing to rest, to allow my body to recover from the effects of the chemo as they are gradually eliminated from my body, and to keep a positive attitude.
I heard from a friend this week, whose wife died of cancer a year ago. He gave me a pithy and apposite piece of advice:
"Don't fight the chemo - fight the cancer!"
Sunday 6th September 2015
After Treatment #6
On Thursday I went in to the Ricky Grant Day Unit (chemo unit) as usual for my pre-treatment bloods – no problem there – now they always use the right sized gripper needle for my port, it flushes and produces blood perfectly every time. Then down to oncology to see Dr. Dyke, Dr. Lo’s registrar (Dr. Lo was away this time). We chatted about how I’d been, and because the last one was so much worse, she reduced the dose again in the hope that the effects would be less devastating this time around. She asked me if I felt fit enough to continue, or whether I would prefer a break, but I said absolutely not – there was no way I was going to delay my gilt-edged, red-letter day of 16th October when it all finishes!!
I also mentioned that I was still having problems with mucous discharge from my rectal stump, and that the glycerine suppositories that the stoma nurse gave me were painful, like the Micralax mini-enemas had been, so I wasn’t using them. I told her that over the past couple of days the mucus had also been bloody, so she offered to examine me and see what was going on, which she did. She said she couldn’t see anything alarming, and would phone the stoma nurse. When she returned, she said they agreed I really ought to see Mr. Pullan (my surgeon) so that he could have a look, as this wasn’t really her area of expertise; she would set up an appointment for me which would hopefully come through before my next chemo on 25th September.
I am always very reassured by how they spring into action each time I tell them about any issues I am dealing with – they really go the extra mile to try and help me!
I am hoping that Mr. Pullan won’t recommend the most drastic course of action, which would be for further surgery, to remove the rectal stump altogether, along with my anus, and give me what they call on the stoma forum, a “Barbie butt” – you get the picture!! Mr. Pullan explained to me before the operation that he would be leaving a rectal stump because the removal of the anus is a very difficult operation fraught with complications, and a long and painful rehab afterwards, and more trouble than it was worth, so I was happy to go along with his recommendation.
There is the possibility that there may be some ulcerative colitis in what remains, which could be producing the blood and mucus, and also causing the pain when I used the Micralax and suppositories. If this is the case, he may recommend that I go back on the Pentasa granules (my ulcerative colitis medication) – this would be no hardship.
Anyway, we shall have to wait and see what he says once he’s seen me.
Dr. Dyke gave me another prescription for domperidone, the anti-sickness meds, for me to take after my chemo.
Back again on Friday at noon for my 6th chemo treatment. Again, the port behaved like a dream, although I nearly pulled the needle out of myself when transferring to the recliner chair from my wheelchair, as the line got caught at the back of the wheelchair! All was well, though, because I stopped myself in time, and it was well taped to me, so no damage done.
The session went very well, and the time passed extremely quickly because I was sitting next to a delightful lady and we chatted most of the time! At one point I said to her, “One good thing – like me, you haven’t lost your hair.” She said, “I’m completely bald! This is a wig.” My jaw dropped and I couldn’t believe it! I said it looked so natural and I had absolutely no idea. She was very pleased that I’d reacted like that because she had felt quite a lot of loss of confidence when she started wearing it, thinking that everybody would notice! I said it genuinely never occurred to me that it wasn’t her real hair. She said it was very close to what her real hair had been like, and her daughter was very pleased with the result as well. So nice to be able to make someone’s day without even trying!
I could feel the effects during the final hour, as usually happens with me, and after the nice lady had gone, my hubby turned up and sat with me till it was finished and I’d had my flushes and could go home.
I felt pretty rough in the evening and had an early night, and of course because I went to sleep so early, I woke around 4 a.m. and had to read for a couple of hours. I felt a bit nauseous but there was nothing I could do about that because the pills have to be taken with food and I had to wait till breakfast for that. So I turned off the light and determined to try and sleep again, which would make me unaware of the nausea, and this worked – I woke again at 6 and read some more, trying not to think about my stomach!
I spent the morning in bed and didn’t feel too bad in the afternoon – the steroids were doing their stuff.
Today I didn’t feel too bad when I got up, but once I was downstairs my energy levels fell away and I’ve been resting ever since, and finding it hard to stay awake, dropping off while watching Youtube videos! I shall have another sleep this afternoon, I think.
Too early to say whether the reduced dose is helping this time around – the effects are cumulative, so it may just maintain me at the level of last time, which was the worst so far of the whole course.
To reassure myself, I am reminding myself of several facts: I am now 3/4 of the way through the course; I have had 6 out of the 8 treatments; I have only 2 more to endure; now it’s September, I can say, “I finish next month,” which sounds a lot sooner than “the month after next”; and I have only 6 weeks to go! This makes the end of it all seem very much closer and more manageable. I am amazed at how fast the time is passing – not being one normally to wish my life away, I am certainly wishing this final 6 weeks away all right! I shall, of course, have to endure the recovery period after the final treatment on 16th October, and it’s likely that residual effects will remain with me for many months, maybe up to a year, but not as severe as during the first two weeks post-treatment. I can endure that!
I did flag a little during the two weeks after my previous treatment, and lots of friends online were encouraging me vigorously to keep going – I couldn’t give up at this late stage! – to which I readily agreed! It was just a slight wobble but I’m back on track again. It just felt so, so wearisome, and even though I only had 3 treatments left at that stage, I was finding myself saying, “goodness, I’ve still got 3 more of these to endure,” before bringing myself up short and rephrasing it, “Good! Only 3 more to go!”
And now it’s only 2 more to go. I'll get there.
Sunday 13th September 2015
A Few Bad Days
After treatment #6, and the reduced dose, I really thought I was starting to do better, but on Wednesday I developed a stomach upset with diarrhoea (extremely plentiful and liquid output from Kermit) and griping pains, and no appetite. This seemed to set me back, not helped by a couple of really bad nights with bad dreams and not sleeping well.
I was feeling better by Thursday, and on Friday I slept quite a bit, and yesterday, while my hubby was out, I slept practically the whole day.
On Friday I got really fed up with how I’ve been, and so wanted it to be all over, and felt quite depressed at how my life had been reduced to getting up, coming downstairs and settling on the recliner all day, and then ending up going to bed again – reduced to living in 2 rooms and not going out, not seeing anybody, and generally starting to feel sorry for myself. I got totally fed up with feeling ill all the time, and frustrated that I couldn’t do all the things I wanted to do, and knowing that my desk is covered with accounts papers crying out to be dealt with didn’t help either.
Last night when my hubby got back, I decided to take myself in hand and told myself it was ridiculous to lose heart at this late stage of the game. After all, I’ve only got 2 more treatments to go, and the end is now in sight, and I’ve got to keep going! I vowed from the beginning that I wasn’t going to turn into a moaning Minnie and now is certainly not the time to start.
I decided to make myself a calendar, counting the days off now that the end really is in sight. Today, I have crossed off 33 days to go!!
I know that after the final treatment on 16th October, I will have at least a fortnight feeling poorly as I get over it, but at least I shall know that I won’t be feeling better only to feel worse again with another treatment. I also know that it takes months, even a year or more, for the effects of the chemo finally to leave one’s body and to start feeling well again, but at least it will be progress in the right direction.
I shall update this calendar as the days pass. I've got to keep my spirits up somehow!
Monday 14th September 2015
Not Such a Good Day
I think I may have overdone things a bit yesterday – at last I managed to clear all the accounts papers off my desk and finish last month’s accounts, and in the afternoon my hubby took me and our neighbour for a drive, which was lovely – great to get out of the house for once, and have a view of the sea, and get some fresh air and sunshine. Today I’ve felt weak and shaky and wiped out again, and had a frustrating day trying to make something work on the computer without success, and I’ve felt grumpy and fed up. It wasn’t helped by my intention to spend some time in the studio coming to nothing yet again – I definitely need to get myself in hand because I’ve done so well up till now, and there’s so little left to get through.
Time to cheer myself up with another day crossed off the calendar.
31 days to go!
Tuesday 15th September 2015
Feeling Better Today
My mood is definitely better today and I think I’m back on track again in the positivity stakes (well, at least for now!) and I’ve felt better physically too. I was able to spend the morning in my studio but I didn’t do anything creative, unfortunately – I just spent the time tidying up!
This afternoon I had a visitor, and after she’d gone, I was feeling pretty tired again so I had a sleep before supper.
When my hubby went out this evening, I went up to the studio and started on a creative project until he returned, when I came downstairs. I didn’t want to spend the whole evening up there and get overtired, but I made some good progress.
I am hoping that in the coming days I shall continue to feel better as the effects of the last chemo treatment wear off.
Here’s my calendar for today.
30 days to go! Now just one calendar month! OK, it’s still two treatments, but the end definitely seems a little nearer now.
Wednesday 16th September 2015
A Lovely Day
Things are definitely looking up. I am feeling tons better today both physically and mentally. My black mood has passed and I hope that’s for good. Today a lovely friend came and spent most of the day with me and we had such a good time – a long time since I’ve seen her and we had a lot of catching up to do. She’s only around this week so she’s coming back on Saturday. Family visiting tomorrow so not much time during the rest of this week to spend time in my studio now I’m feeling better, but I’ve got the whole of next week so hopefully I will spend some real quality time in there and work on the projects I’ve been hankering after doing for so long.
My hubby put up with a lot from me when I was so fed up, and wisely kept his distance lol! Then I heard him telling my friend that I was coping really well! Bless him. I do try not to give him a hard time because it’s not just me going through this journey and he’s had a lot to deal with, and it’s always much harder for the spouses, watching us going through it and feeling helpless. I always say he is not helpless – it’s not just all the things he does for me, but just the fact that he is THERE for me, supporting me and encouraging me – that’s more than enough in itself. I feel bad when I let myself down and give him a hard time! I vowed from the beginning that I would do my utmost to avoid doing that, and mostly I’ve succeeded by the grace of God – but I’ve had a few lapses! He is very longsuffering.
My countdown calendar for today:
Suddenly the 30s have become 20s! 29 days to go! The time is flying by now, and once we are into October we'll really be on the home stretch with only the last treatment to come.
Thursday 17th September 2015
A Special Day
Today is special for two reasons, the first being that it is now only 28 days, or 4 weeks, till my chemo is over! That sounds a very short time, doesn’t it. We are really counting down now.
The other reason today is special is that it is the 30th anniversary of the day my hubby and I first met. We were both at a lecture and he was sitting at the back and spotted me – I had very long hair in those days, that I could sit on, and it was loose all down my back. I don’t think he was concentrating on the lecture at all!!! In the interval he came forward, pretending he wanted to speak to the man who had brought me and a couple of other people – he had been at college with him – but in reality he just wanted to see if the front was as good as the back. He decided it was, and over coffee at the end, he proceeded to chat me up! The rest is history.
We had a nice family visit today, and before and after, I was able to spend time in the studio – two sessions! You can read about it on the main blog. One good thing about feeling so poorly after each chemo session is that it really makes me appreciate the times when I feel well enough to do things, and to be creative.
Here’s my countdown calendar for today.
Friday 18th September 2015
Sleep, Sleep and More Sleep
Not sure if it’s because I’ve been overdoing things over the past few days, but I had a headache when I went to bed last night, and thought I wouldn’t bother to take anything and I’d sleep it off. I woke at 5.15 a.m. and got up to empty Kermit’s bag, and the headache was worse. I did take something then, and went back to sleep. When I eventually woke again, I was surprised to find it was after 9 a.m.
After my hubby had brought my breakfast I stayed in bed till mid-morning and slept some more. When I got up, I did spend some time in the studio making things for our neighbour, and the headache was worse, and I started to feel a bit sick. I had a cup-a-soup for lunch and that’s all, and for the rest of the day I haven’t been able to keep awake! I did eat some supper but haven’t felt well all day. I am hoping to feel better tomorrow because a friend is supposed to be coming over and I want to be OK for that.
Here is my countdown calendar for today.
27 days to go!
Saturday 19th September 2015
A Better Day Again
I seem rather to be alternating between good and bad days this week! After a much better night’s sleep, the headache was definitely on the way out when I woke, and I’ve felt a lot better all day. My lovely friend came to visit in the p.m. and we had a great time, which gave me a boost, too.
Not a lot else to report. Here’s my countdown calendar for today. Now only 26 days to go.
Sunday 20th September 2015
Not Too Bad
Things definitely improve during the final week of each three-week chemo cycle. Feeling much better now, although I still tire easily and I needed a rest in the late afternoon.
My countdown calendar for today.
Twenty-five days to go.
Monday 21st September 2015
Today my hubby took me out which was lovely. I tend to get a bit stir crazy stuck in the house all the time, although I do love being at home, and I get a lot of contact with the outside world via the internet.
We had had a letter in the post a while back rom Pelican Healthcare (who supply stoma products) saying they would be visiting our area and a small open afternoon had been arranged in a local hotel suite. This hotel, the Passage House, just outside Newton Abbot, is just next to the Passage House Inn where we have often eaten out, so I suggested we went out for a nice meal first, and then went to the meeting, and this we did. They have a carvery every day and we both opted for that – quite delicious!
Not very many people attended the meeting unfortunately, but the lady from Pelican remembered me from the open day in Newton Abbot a few months ago and was interested to hear how I was getting on. I had a long chat with the couple who run the local branch of the IA (used to be Ileostomy Association but now the Ileostomy and Internal Pouch Support Group) which I decided to join today – I’d thought about it before and didn’t see much point as I was getting a lot of help and support from the Inspire forum and from the stoma team at the hospital, but they have meetings several times a year with different speakers, and it’s an opportunity to meet up with other ostomates and their spouses.
Light refreshments were laid on, and I had some good conversations with several people there, as well as being able to pick the brains of the Pelican representative about one or two things. I came away with a few samples and other bits and pieces, including the inevitable free pens and notebooks! Always useful!
The IA is holding a local meeting in Ottery St. Mary at the beginning of December, with a visiting speaker from the National Trust, speaking about the renovation work at Castle Drogo which I know both my hubby and I will be interested in, so we shall be going to that. Lunch is laid on, and there will be the opportunity for conversation with fellow ostomates. The meetings are apparently quite well attended.
I am rather tired now after a quite busy day, but it was worth it. Always nice to get out of the house, and while the weather looked distinctly unpromising first thing (raining) and we decided to leave the buggy at home, it did clear up and was quite sunny but rather windy, so we didn’t get wet.
My countdown calendar for today.
Twenty-four days till the end of my chemo! I am NOT looking forward to Friday, the penultimate treatment, but at least once that’s over, there will be only one to go.
Tuesday 22nd September 2015
A Busy and Productive Day
I do enjoy these days at the end of each cycle, when I can do things because I feel well enough. Today I have been in my studio making a birthday card for my aunt, and also sorting some new Brusho paints and getting them labelled. Having two weeks out of three when I am not up to doing anything really makes me appreciate the good days.
My countdown calendar for today.
Twenty-three days to go till the end of my chemo. Only one more week of September to go - this year is simply flying by.
Wednesday 23rd September 2015
Another Busy and Productive Day
I do so enjoy these “well” days! I spent quite a bit of time in my studio today pressing on with the projects I am desperately trying to finish before my chemo on Friday!
Tomorrow I am going in for bloods and my regular oncology appointment prior to the chemo on Friday. Both appointments are in the morning, which should leave the afternoon clear to work on.
Here is my countdown calendar for today.
Just over three weeks to go until it’s all over!
Thursday 24th September 2015
Bloods, Oncology and Some Good News
This morning we went in to the Ricky Grant Day Unit again for my pre-chemo bloods. They were running late and I wasn’t called in until 5 minutes before my oncology appointment, so the receptionist called down to warn them I’d be late. The bloods went without a hitch – no problem with the port now that they use the correct sized needle each time. I always remind them it’s the 2.5 cm one because I don’t want to end up stuck like a pin cushion because they can’t get anything out of the different sized ones!!
Then straight down to Oncology and we only had to wait 5 or 10 minutes before I was called in. I saw Dr. Lo again – she had been away on holiday last time and I saw her registrar, Dr. Dyke. Both are extremely nice ladies and I always feel very relaxed and at ease with them.
As usual she asked how I’d got on after my last treatment, and I told her the peripheral neuropathy continued to be a problem, and each time it seemed to last longer. I have been experiencing it a bit this week – it is not usually present in the final week of the three-week cycle. This is the effect they are most concerned about, because if it isn’t monitored it can end up becoming permanent which would be very unpleasant. The only way they can keep it at bay is with a reduced dose of chemo.
Then came the good news. She said that there has been some research ongoing into adjuvant (post-surgery) chemotherapy, which indicates that those whose chemo is reduced may do just as well as those undergoing the full dose for the full six months. In view of this, and the fact that she is concerned about the peripheral neuropathy, she has decided to reduce the dose of my chemo for the final two treatments by half! I asked if this would compromise its effectiveness and she replied with the above information about recent research. I am highly delighted with this news, because I should notice a huge difference in how I feel afterwards, and it makes facing the final two treatments a lot easier, knowing that I am unlikely to feel as poorly as I have been to date.
I have already had the dose reduced by 10 percent on two occasions, but because the effects tend to be cumulative, I haven’t noticed too much difference in how I have felt, and this last time, I have experienced the peripheral neuropathy into the third week, and have also had an unpleasant taste in my mouth pretty well throughout. The exhaustion has been profound, and I have really only enjoyed one week out of the three when I felt better enough to do anything of any consequence – against all the good advice meted out to M.E. patients about boom-and-bust, I have been cramming in as much activity as possible into this one week, because I was getting behind with things, and had deadlines to meet in the studio. As a result, I have got pretty overtired and tend to collapse on the recliner and go off into a deep sleep with very little provocation!
My hubby asked how soon after my final treatment I would be called in for a scan. Dr. Lo replied that it would be six to eight weeks after I’d finished the chemo. I would then only need one scan a year for the next five years, and that they would glean most of the information from blood tests. We talked about cancer markers, and she said that my blood was looking very good, and they had no worries. It really does look as if they got rid of it all with the surgery, and the chemo was just to make sure. I do feel very optimistic that this will have been dealt with effectively and there should be no recurrence.
My penultimate treatment tomorrow begins at 1.15 p.m. I am hoping they won’t phone in the morning to ask me to come in earlier at short notice like they did once before – I was still in bed and knew I couldn’t be ready in time, and ended up rushing about, and then being kept waiting at the other end! They are always concerned about getting oxaliplatin patients through their treatment before they have to shut up shop – this chemo takes four hours to infuse, to which of course you have to add the time involved in inserting the needle and doing the necessary flushings before and after treatment.
I am not sure if half the dose means half the time, or a smaller bag transfused over the same time. We shall have to see.
My countdown calendar for today. Three weeks to go, and then it’s all over.
Friday 25th September 2015
Seventh (Penultimate) Chemo
Today I went in for my seventh, and penultimate chemo treatment. Yesterday Dr. Lo, the oncologist, said she would reduce the dose to half the original amount for the final two sessions in order to mitigate the troublesome side effect of peripheral neuropathy which can become permanent if it is allowed to continue unabated. I was very surprised (and delighted) at this reduction, and was reassured that it would not compromise the effectiveness of the treatment. I am looking forward to seeing if this affects how I feel over the coming fortnight – I should notice a huge difference!
The Ricky Grant Day Unit phoned this morning while I was still in bed, to ask if I would come in earlier than my 1.15 p.m. appointment. I was half expecting this, because it happened before when they’d made me rather a late appointment. Because the treatment takes four hours, they are anxious to finish before the unit closes for the day. Why they can’t think of this when they make the initial appointment is beyond me! Last time I had to rush around and was still late, but at least this time they asked me to come in at 12 noon, so I still had time to get up and do everything that was necessary, and have a bit of time to myself in the morning before setting off.
All went off OK, except that the place was absolutely heaving with people today! For the first couple of hours there wasn’t a recliner chair available for me, even though I specifically requested it because I find it uncomfortable to sit in a normal chair without having my feet up for any length of time. The chair they offered me was the same as the one I’d had on the ward after my operation and it was very uncomfortable! After a short while I transferred back to my wheelchair which was at least more comfortable and supported me in all the right places, but I really did want to get my feet up. It was rather annoying that the man sitting opposite me was sitting on a recliner but in its upright position, so he would have been just as comfortable on a normal chair, freeing up the recliner for the likes of yours truly!! Eventually, though, this recliner became available when the man left, and I sat next to a delightful couple (husband having treatment) and we had a nice chat.
So far since coming home, I’m not feeling too bad, apart from feeling rather weak, exhausted and spaced out, but the steroids are still working and I ate a good supper, and have been on the computer this evening. We shall have to see how things go over the next few days.
Here is my countdown calendar for today. With the completion of treatment #7, I am now down to exactly 3 weeks till the conclusion of my chemo.
Saturday 26th September 2015
A Good Day Post-Chemo
I was thrilled today to be feeling so much better, and even managed to spend a couple of hours in the studio in the morning. I haven’t pushed it, but have felt pretty good.
Here is my countdown calendar for today.
Sunday 27th September 2015
Not So Good Today
I started my day feeling pretty good, but didn’t go in the studio. My hubby was out till the afternoon and had left me a tray of lunch which I managed to eat but had very little appetite. Our sister-in-law popped over this p.m. and I was feeling increasingly tired, and when my hubby came home he took her out for a walk and I went right off to sleep on the recliner, only waking when they returned. My hubby cooked me a small, basic macaroni cheese and they had an Indian takeaway. Again, very little interest in food, and I’ve felt wiped out all evening.
It’s very disappointing because I really did expect to be feeling a lot better than this.
We shall have to see how things go over the next few days.
My countdown calendar for today.
We’ll soon be out of September and then the serious countdown begins!
Monday 28th September 2015
Another Day Feeling Rough
I must say, I didn’t expect to feel as rough as I am today, with the reduced chemo dose. All day I have felt weak and shaky and spaced out, and have spent most of the day resting. I stayed in bed till 11 a.m. and slept on, and then had another sleep this afternoon. I spent about half an hour in my studio but couldn’t keep going, but at least I enjoyed doing a little bit which was fulfilling.
One good thing is that the peripheral neuropathy is definitely better as a result of the reduced dose, which was the aim of the exercise, so I can’t complain! I know this exhausted feeling will pass, and I just have to do my usual thing and keep going with the flow, resting as much as possible, and trying to keep optimistic. It certainly helps, knowing I only have one more treatment, and we are nearly through this long and hard journey.
I have had very little appetite again today but my hubby has tempted me with small and tasty meals, so I have managed to eat.
My countdown calendar for today.
Tuesday 29th September 2015
A Noticeably Better Day on the Reduced Dose
After a not-so-good start, things started to improve during the day and I felt a lot better, and didn’t need a sleep during the day. I did feel pretty paced out and shaky, but without that awful general overall feeling of poorliness that I have had before, especially in the first week of the cycle. The reduced dose is definitely an improvement!
The main reason for the reduction in the dose was to manage the peripheral neuropathy, and this is very much improved as a result. I have not had to wear my gloves apart from on the first couple of days, and I am at the stage now that I would anticipate being in week 3 of the cycle, so this is very good news. I am sure the oncologist will be pleased.
I have been delighted to be able to spend a few short spells in the studio – I can’t do much before I feel too shaky and exhausted to do more and have to come down and rest, but at least I am doing a bit, and a little and often seems to be better than one long stint.
I have also been able to do some drawing from the comfort of the recliner, which is good, so my time is not wasted!
The most important thing I am noticing at the moment is a definite looking-forward and positive attitude about getting my life back to normal again. It’s been a while since I’ve been able to think about this, but now I am anticipating the time when I will be able to start cooking again, and getting the kitchen sorted how I like it, and shopping online for groceries, and taking the laundry back from our lovely cleaning lady who has been doing it for me all these months. With the resumption of normal duties I am going to feel a lot more like myself, although the novelty of domestic tasks may soon pale!! My dear hubby has done so much for me during this year when I have been so ill, and he couldn’t have done better, and I appreciate it more than I can say. He is no cook, but has managed very well with ready meals, and has tried to give me lots of variety, and to make the meals appetising and tempting when I have not felt like eating. He has been kindness itself and I simply don’t know what I’d have done without him! I am looking forward to getting back in harness now and looking after him again, as I used to.
I think that the fact that I am thinking along these lines is very positive. I can now see the end of my treatment well in sight, and it marks the end of Phase 3 of this long journey which has taken all year – Phase 1 being the surgery and its preparation, Phase 2 being recovery and learning how to manage Kermit, my stoma, and Phase 3 being the chemo. No sooner had one phase ended than the next began and it’s been quite a rollercoaster!
They are all very pleased with my progress at the hospital, and my cancer markers are excellent, with no trace remaining. I will have to have scans and blood tests, of course, just to keep an eye on me and make sure it doesn’t return, but Mr. Pullan, the surgeon was very optimistic that he had got it all out.
Here is my countdown calendar for today.
Wednesday 30th September 2015
Another good day today on my reduced dose. I took advantage of feeling well and dyed my hair and changed the bedding and sorted the laundry and other odd jobs that took me the whole morning, and then was so exhausted that I had to go to sleep this afternoon! All well though. I was able to do some colouring this evening and just enjoying the positive feelings I am now having about the future, and how easy these last two treatments are proving to be with the reduced dose – a real bonus as I was expecting things to get progressively worse, not better. Very keen now to get my life back on track and start looking after my poor hubby for a bit – he’s very tired at the moment.
So – we are now at the end of September! The serious countdown to the end of my journey is now at hand! Here’s my countdown calendar for today.
Thursday 1st October 2015
A Rather Frustrating Day
Although I continue to feel a lot better than I have at the same stage in previous cycles, today I felt very unfocused and foggy, and very unsteady on my feet. My hubby reminded me that today was our friends’ diamond wedding party. I had originally thought I would not be well enough to attend, it being less than a week after a treatment, but with the reduced dose and feeling so much better, I decided to go. I had actually forgotten when it was, and had not made them a card, so I got myself together to do this, and spent a most frustrating morning making so many mistakes because my brain had gone AWOL, and not being able to find half my stuff, etc. etc. I got it done in the end and it did get a bit easier as time went on.
After a late lunch I rested for a while and then we set off. It was a lovely party and the card was very much appreciated. I did feel a lot better later and spent the evening on the recliner relaxing.
I am sure there are going to be days when I feel less good, but compared with how I’ve felt before, today was still a great improvement, so I must hang onto that!
We are now into October! We are now into serious countdown time and I have accordingly reduced the calendar to one month! A fortnight to go till my final treatment.
Friday 2nd October 2015
Very Tired Again Today
As I anticipated after rather overdoing things yesterday, not such a good day today. I did a bit of pottering about in the office in the morning, and updated my blog (took the rest of the photos I needed for that) and then in the afternoon I rested. I had an awful headache in the evening which persisted until the next morning.
Countdown calendar for today:
A fortnight to go!
Saturday 3rd October 2015
An Outing, and More Rest
I was feeling a bit stir-crazy this morning, having spent so much time at home, and asked my hubby to take me out, so we went along the sea front and I enjoyed a beautiful sunny day and some fresh air, and we ended up having coffee in the sunshine. When we got back I crashed out on the recliner and went off into a deep sleep until lunch time! It’s amazing how just trundling around on my buggy completely wore me out. I may be better on the reduced dose, but certainly far from 100 percent.
I rested this afternoon, and am not pushing things. There will be plenty of time to get my life sorted out once I start to feel really better!
My countdown calendar for today.
Sunday 4th October 2015
Feeling Wiped Out Again
After our two pretty relaxing little outings over the past couple of days, I have had to have a sleep both times. I seem to be feeling pretty wiped out again despite the reduced dose, but at least the peripheral neuropathy is much better, apart from a few episodes after touching cold stuff, but I haven’t had to keep the gloves on all the time.
I have to accept that even with the reduced dose, I am feeling the effects as there is still quite a lot of chemo in my system. I have to keep on going with the flow and looking forward to the time after the final treatment, when I can really start to recover properly. It won’t be long now.
Here’s my countdown calendar for today.
Monday 5th October 2015
Surprisingly, on the reduced dose, and after feeling noticeably better initially, I have been feeling increasingly rough again over the past couple of days. I thought I would try and catch up with some rest this morning, so I stayed in bed until lunch time, alternately reading and sleeping, and once I was up, I had another long sleep this afternoon.
In the brain department I feel like a total zombie. I can’t concentrate, and keep forgetting things, and seem to be in a complete fog. No point fighting it – just got to go with the flow as usual, and hope it passes off sooner rather than later!
Here’s my countdown calendar for today. I’m now about half way through this cycle.
Only ten days to go till it’s all finished!
Tuesday 6th October 2015
Slightly Better Today
I am feeling slightly better today and only had a short sleep in the early afternoon. I still feel wiped out, still have the horrible taste in my mouth, and my appetite isn’t up to much, but apart from that I’m not too bad. The peripheral neuropathy is definitely improved on the reduced dose, which was the object of the exercise, so I suppose I can’t complain about the rest! I am hoping to feel sufficiently better tomorrow to be able to do some things again.
Here’s my countdown calendar for today.
Down to single figures!!
Wednesday 7th October 2015
Much the Same
Not much improvement today. I have had another daytime sleep. I did manage to spend a bit of time in the studio in the morning cutting some card but became too shaky and exhausted to do much and had to come down to rest. This is going to take time, and I have to be patient...
My countdown calendar for today.
Just over a week to go.
Thursday 8th October 2015
Well, I did manage to achieve something today – not what I wanted, but it’s a start! I managed to complete last month’s accounts. It took me considerably longer than I’d hoped, because I found several mistakes I’d made in the most recent months (evidence of chemo brain in operation) which had to be put right, but I got there in the end. Then I had to come down and rest again. I had a short sleep only, and watched some TV and went on the computer. My hubby was out all day.
My countdown calendar for today.
Only a week to go!
Friday 9th October 2015
Much Better Today
I’m definitely feeling better again today as I enter the final week of the chemo cycle. I managed to do some studio time this morning and then rested this afternoon but I haven’t had a daytime sleep at all today, so that’s progress. I have plans for more time in the studio tomorrow, all being well, but I’m certainly not pushing things.
Here is my countdown calendar for today. My final treatment is a week today! Where has the time gone? Half way through, it certainly wasn’t going quickly enough for me! I’m not normally one to wish my life away, but I was certainly wishing it away at that stage. Someone said to me at that time that once the half-way mark had been reached, the time would gallop away – I wasn’t convinced, because it was all so awful, but she was right! Here we are with less than a week to go before it’s all over.
I want to make the final week of this cycle count, and I need to be doing some creative stuff. We’ve got a busy week next week with various people visiting, but I should be able to put some time in, especially over the weekend.
Saturday 10th October 2015
A Lot Better Today
As the third week of the cycle begins, I am feeling very much better, and managed to put in some quality time in my studio this morning, sorting out my paper stash and making three cards from my recent drawings. This gave me a real boost and a great sense of achievement.
We’ve got a busy week ahead with something happening every day from Monday onwards, so I expect I shall be extra tired after my next and final chemo! It will be worth it, though – we are seeing various family members and some old friends, too, and having some outings.
Another lovely boost today – I had a blog comment from Shaz, who has been incommunicado for several weeks following her major rectal cancer surgery. Although her hubby has been doing stirling work keeping all her friends up to date with his special blog about her progress, it is very, very good indeed to hear from the girl herself, and to know she is back in the land of the living!! We all wish her well and hope she will soon be well enough to be sent home, and that her recovery is well under way. She has been such a support to me through my own long journey.
Here’s my countdown calendar for today. Look how few dates still need to be crossed off! Only 5 days to go!
Sunday 11th October 2015
Feeling Pretty Good Today!
I’m really enjoying the benefits of week 3 of the chemo cycle now, feeling tons better. I had a good session in the studio this morning experimenting with my new Brusho paints. When I came down for lunch I suddenly crashed and felt very exhausted, and although I felt rather sleepy, I didn’t actually sleep, and watched TV from the recliner all afternoon, and did a bit on the computer. It’s going to take a while for my stamina levels to improve, once the chemo is finished.
I’ve still got a pretty nasty taste in my mouth but it doesn’t seem to be there all the time, which is good. The peripheral neuropathy is now much better, too, and it certainly hasn’t been so bad in the early days of this cycle, so the main reason for the reduction in the dose has proved itself. Dr. Lo is going to be pleased, I am sure. It also means that it is a lot less likely that this effect will become permanent, which is a relief.
We’ve got a busy week ahead, with visits to and from family, and some old friends coming down to visit on Tuesday. Each day something is happening, with my bloods and oncology appointments on Thursday, and of course, my final chemo on Friday. I can’t believe that we are into serious countdown mode now, with only four more days to go!
Goodness, we’re down on the bottom line of the calendar now!
This evening I have been looking at recipes online, and anticipating the time when I shall start cooking again, in a few weeks’ time, after I get over the effects of the final chemo. My hubby has done very well for us both over the past months, but we have been living off ready meals, and however delicious they may be, they do not compare with home cooking and one doesn’t have so much control over what goes into the meal. This evening I have been looking at recipes for sweet potatoes, which I am ashamed to say I have never cooked in my life! I have eaten them when eating out and loved them, and I have discovered how healthy they are. I am planning on cooking some more adventurous and tasty (and hopefully healthier and lower-calorie) meals for us both to enjoy, and to be able to pamper my hubby a bit and give him a break from all the hard work he has done on my behalf since I’ve been ill.
I have also been thinking that even though we’ve had a lot of ready meals, my hubby has also brought home some different things for us to eat, that we weren’t having before, and much of this was as a result of him actually doing the physical shopping in the real supermarket, rather than what I was doing before, which was almost exclusively online. I tended to stick to whatever was in my “favourites” list and didn’t spend a lot of time browsing the virtual aisles. I think maybe once in a while if he were to take me shopping to Sainsbury’s or wherever, I would be able to discover some new things for myself, and it would keep my ideas fresh and varied.
I can’t wait to get back into my kitchen now, and get it sorted, and organise my store cupboards again, and see what we need to stock up on. It all needs a good clean-up too! Not that I’m intending to do it all at once and overtire myself, but it will be nice to get on top of it all again.
Monday 12th October 2015
Really Enjoying the Benefits of Week 3!
I so appreciate feeling so well towards the end of each chemo cycle, and week 3 is the week when I feel sufficiently well to do more things. I put in more studio time this morning and mounted the Brusho paintings I did yesterday onto cards, and was able to give our sister-in-law one tonight which she was pleased with. We had such a lovely evening with them, and I am so glad her birthday coincided with a good week for me.
Looking forward to our other visitors this week and the fun we are going to have with them.
I still can’t believe how fast the time is going, and how quickly the date of my final chemo is approaching. We are into serious countdown time now!
Only three days to go!!!
Tuesday 13th October 2015
A Busy Day
Another busy day – we had friends visiting. They arrived mid-morning and we all went out for lunch together on Babbacombe sea front, in our favourite café. It was a beautiful sunny day but the wind made it too cold to sit outside to eat. Afterwards we walked along the sea front and the sea and sky were so blue! A perfect autumn day.
They left around tea time and then I had a sleep. Although I am very much better, and being with people gives me a sufficient adrenaline rush to keep me going, when it’s over I do tend to crash a bit! Worth it, though. We had a lovely time with friends whom we had not seen for quite a few years.
My countdown calendar for today.
Only two days to go! It hardly seems possible.
Wednesday 14th October 2015
Another Busy Day!
This week seems to be full of visits and visitors! Another family visit today, for lunch. I did manage to put in some studio time, and in the evening I actually managed to do some colouring! Soon I shall be doing this every day without a second thought.
I so appreciate the third week of each chemo cycle, when I feel human again, and feel well enough to enjoy life and do some of the things I enjoy best. The poorly weeks make this final week of the cycle all the more precious. I hope that once the chemo is finished, I will never take for granted how well I feel, but rejoice in it and count my blessings daily.
My countdown calendar for today shows that there is only one full day remaining until my final chemo treatment. Can I really say, “The day after tomorrow...” How quickly the time has flown!
Thursday 15th October 2015
Today, being the day before a treatment, I went in to the hospital to have bloods taken as usual, on the Ricky Grant Day Unit. After they had done this, they gave me my MRSA swab kit (which I usually get given at the previous treatment but for some reason this wasn’t done – I can take them in tomorrow when I go for chemo), some more Ametop local anaesthetic for the port in readiness for tomorrow, together with some more dressings for that, and another pot of cow cream! I come home loaded up with stuff...
We then discussed when I will next need to come in. I was told that the port requires flushing every six weeks if it is not used. Up until now it has had regular flushings every three weeks when I have my treatments. They will leave it in place for now, at least until after my CT scan and after the oncologist is happy with my blood results in the coming weeks, just in case it is needed again. I am sure I won’t be needing any further chemo, but it would be silly to remove the port until they are completely sure. My appointment for the flushing is six weeks on from tomorrow’s treatment, i.e. Friday 27th November.
After this, we went down to oncology. Dr. Lo and her registrar, Dr. Dyke, were both working in the clinic today, and we saw Dr. Dyke. She is so nice! So is Dr. Lo. I don’t know where they find so many absolutely lovely people but Torbay Hospital is full of them!
She asked how I’d got on since I was last there, and I told her that the first week after the treatment had been good, and that I was very pleased that the reduced dose seemed to make such a marked difference in how I was feeling, and how I had then crashed in week 2, but by week 3 (this week) I was considerably better. Asking about the peripheral neuropathy, she was pleased that I was able to report that the reduced dose had reduced this considerably, which was the object of the exercise. I told her that I had not had to wear the gloves nearly as much as usual, and although it was still there in the first two weeks, it was very much better than it had been before, and by this week it was virtually gone. This is good news, because it looks as if it will clear up completely once the last traces of chemo have left my system. She said that they proposed keeping the dose for the final treatment the same as last time, i.e. at 50 percent of the original dose, and this pleased me greatly.
She asked if I had seen Mr. Pullan (my surgeon) yet – she had fixed the appointment for me when I last saw her, when I was concerned about the bloody mucous discharge I was experiencing from what remains of my rectum. I told her I had an appointment for 29th October. I said that the problem was largely resolved now, but I had intermittent bouts of discharge, but they had not had blood present, or if they had, it was minimal. She agreed that it could be an effect of the chemo, breaking down the walls of any already delicate blood vessels in that area, but it would be good to see Mr. Pullan and be reassured. There is a possibility that there may be some colitis remaining in that area and I may need to go back on my medication for that. We shall see.
She said that I should come back and see them in six weeks’ time, which would be on Monday 30th November. I told her I had an appointment on Friday 27th November at Ricky Grant for port flushing, and she said they could take blood then, and the result would be back in time for my appointment with them the following Monday. She also said that I would get an appointment for my CT scan, to take place some time before that, so that that result would also be back with them before I returned to oncology. These results together would point the way forward for what needs to be done next – hopefully nothing! – just blood tests every now and then, and maybe more scans, over the next five years, to make sure I remain in the clear.
It felt very strange, both on Ricky Grant and in oncology today, to be talking about appointments in six weeks’ time, rather than planning for the next treatment! The final one tomorrow marks the end of phase 3 (phase 1 being preparation for, and having, the surgery; phase 2 being learning how to manage Kermit, my stoma, and phase 3 being the chemo), and after I have recovered from that, we can move forward into the uncharted waters of my New Life – hopefully a cancer-free one! I have every confidence that this will indeed be the case, and the professionals share that opinion, too, but are taking the right precautions and keeping an eye on me, to make sure.
My final countdown calendar! I simply cannot believe that we are now down to “0” after counting down for so many weeks! The final stages of this chemo journey have simply galloped away, and suddenly I am facing the final hurdle. After this, my new life begins, and I can concentrate on getting really well again, and picking up the threads of my life.
Friday 16th October 2015
I HAVE FINISHED MY CHEMO!
I keep being quite overwhelmed by the fact that today I had my final chemo session! I wonder when I am going to wake up and find that it is not true and that I still have loads to get through... Since session 5 (after which I got really fed up with feeling ill all the time, and wondered if I’d ever get through it) the time has simply raced away, and suddenly I was facing the final session.
I arrived in time for a 12 noon appointment, but because they were so busy, I was kept waiting until nearly 1 p.m. In the end this was a blessing in disguise (more later). I was taken in and the gripper needle fitted into the port, and I had my usual flushing, steroid injection and anti-sickness medication infused (ondansetron) before the final bag of oxaliplatin was hooked up, and I was trundled off to the treatment bay. I discussed my 6-week appointment with the nurse, mentioning that Dr. Lo wanted me to have bloods taken then as well as the port flush, to be ready for my appointment with her the following Monday. I also handed in my MRSA swabs and collected my ondansetron and steroid tablets to be taken over the next few days.
When I eventually got into the treatment bay, I began by eating the lovely packed lunch my hubby had so kindly made for me, and continued through the afternoon with a combination of a bit of colouring for my Florabunda card project, reading my book, and doing part of a puzzle, and chatting with some really lovely people. One lady told me she’d recently had a colostomy and wasn’t dealing well with it. I had a chat with her and said that how she felt did not alter the fact of it being part of her life, and that a change of attitude would really help her. I shared my story, and also gave her quite a few hints that I have learnt along the way. I got some nice feedback from one of the nurses later, that this lady had found the conversation very helpful. I shall be very happy if any of my experiences over the past year can be used to help others even in a small way.
The atmosphere is so friendly on the unit and even people whose cancer is terminal have the most amazing upbeat attitude and are full of smiles, and the resolution to make the absolute best of whatever life remains to them, and everyone emphasises the importance of family, of love, of appreciating each and every day, of counting one’s blessings – all those things that money cannot buy, and which are of infinite worth. All attitudes and thoughts I have been cultivating over the past months! The nurses are also all amazing, and the clerical staff too – there is a lot of laughter in what is a happy place, despite the seriousness of its raison d’etre. Logically, it should be a place of doom and gloom and depression, but the resilience of the human spirit, and love and caring, make it quite otherwise.
My hubby arrived while I still had about a quarter of an hour of chemo infusion to go, and then I saw the machine count down from one minute to zero, and my final beeps began, and I raised all my imaginary flags! Laura, the nurse who had been looking after me today, came and did my final flush and disconnected the needle from the port, and I was free to go.
By this time, because of the delay at the start, all the other patients had gone, and the nurses were not all rushing around being ultra-busy, so I got my phone out and said I wanted some photos of me with them all. They were all very enthusiastic about the idea, apart from one who wailed, “I haven’t got any makeup on!!” in very good humour, and was instantly shouted down, in equally good humour and a lot of laughter (“We haven’t got time to wait two hours...” “I’ve got some permanent markers in my locker...” etc. etc.!!) We called Emma, my favourite desk clerk of the team who work on reception, and she came and joined in the photo shoot too.
I am a dunce when it comes to mobile phones. I recently inherited my brother-in-law’s old Samsung Galaxy smart phone and have not kept up the pay-as-you-go – I really need to get that sorted – but lots of other features work on it, including the camera. I hadn’t taken my normal camera because the battery was on charge, so I decided to take a risk and use the phone. My hubby took some photos of the group, and I took several of the unit. Later, I had an awful job trying to transfer them to my computer and eventually managed to do it via the USB cable, once I’d worked out that you had to alter some settings on the phone itself before my file manager software would recognise the camera, and allow me to drag and drop the photos across.
Here are the photos I took of the Ricky Grant Day unit (looking very strange with no patients!) – you will see what a lovely place it is, and how they have gone to a lot of trouble to introduce restful pastel shades, and a lot of pale wood panelling, to make it look less clinical. The first photo shows the corner of the reception desk, looking down the further corridor, which has doors off to the right with separate treatment rooms, some of which have couches in them for people to rest on while they have their chemo – I used one of these for my first session when I was still a bit woozy from the anaesthetic when I had the port fitted. You can see the IV poles on the left, which hold the bags of chemo and other medications for infusion, and blood for those having blood transfusions.
Looking back the other way from reception, you can see the wide corridor that also serves as the waiting area. As usual in every hospital waiting room I have ever been in, there are NO spaces to park wheelchairs, with the result that I ALWAYS feel as if I’m in the way! I have written this on numerous feedback sheets but so far nothing has happened to remedy this – considering how many disabled people attend hospitals, I think this is quite an oversight. On the far right of the foreground of this photo you can see the large rubbish bin, the space in front of which has become my favoured parking place! (Make of that what you will, lol!)
Behind the seats in the waiting area are two wide gaps giving access into the two treatment bays. The next picture shows the first one, where I have always gone. On the right, between the windows, you can see a low dividing wall which separates the two areas. The second area has a wide-screen TV on the wall. It looks very odd with no patients sitting in the chairs (you can see one of the recliners in the corner – my preferred seating as they are very comfortable, and the other chairs certainly are not – at least for me!), and the occasional tables which have jars of sweets for people to suck to take away the horrible taste of the chemo. Along the wall, on the white strip, are numerous power points to plug in the drip machines, which will also run on battery power for a limited time to enable people to trundle off to the loo, or get a cup of coffee. (I always had to have someone to push my IV pole as I need both hands to propel my wheelchair.)
This is the area that so impressed me on my first visit to the unit, when I had my “New Patient Talk"” appointment where everything was explained to me). I saw all those people sitting there, attached to their machines which make a gentle, rather hypnotic sound, and all I could think of was that they resembled a herd of cows in the milking parlour, patiently chewing the cud while attached to their machines!! When I went in for my appointment they gave me various things to help with side effects, including a pot of “Udderly Smooth” cream for my hands and feet – originally designed to put on cows’ udders, and the farmers so liked it on their hands that it began to be marketed for humans too – but they retained the name, and the black-and-white cow hide print on the jars. I was convinced that I would come out at the end of the treatment transformed into a cow after all that!
So this is the milking parlour. I am now well and truly one of the herd.
Here is Emma, my favourite reception clerk, at the desk. If you look carefully it looks as if she’s got three arms. This is because one of the nurses was hiding behind her, unbeknownst to her, and raising two fingers above her head, which you can just see if you look very carefully! Lol!
[Emma has subsequently left the unit and now works in another department in the NHS, in town, away from the hospital. I really missed seeing her on visits to Ricky Grant after she’d gone, and I made a special effort to go in just before she left, to say goodbye. She is so lovely and I am sure her presence is very much missed on the unit.]
Finally, here is the group shot my hubby took. I am leaning back with my arms around the two nearest to me, and I look so FAT!!! (OK, I AM fat, but not as fat as I used to be!) You can see how happy everybody looks.
I was sorry that several of the lovely nurses who have looked after me over the past six months were not present today. I shall be emailing one of them with the photo so that she can pass it on to the others. They were all exceptional people, so friendly and encouraging and helpful, and efficient in their work – so sad that they are so busy because there is so much cancer about. They are unfailingly cheerful, remember our names, and give us the very best treatment. As we were leaving, Emma gave me a questionnaire to fill in about what I felt about my treatment, and I gave them a five-star rating on every count, and in the comments section, said that if chemo could ever be considered to be fun, it would be, given the nature of the truly wonderful staff on the unit, and that they all deserved a gold medal with diamonds on it. When I started writing, they all started chipping in with remarks like, “I (Emma) am the most efficient clerk on the unit,” and “I am the best nurse,” and “I am the most beautiful nurse” etc. etc.!!! Eventually I cried out “Stop! If I start writing that I'll forget someone and they will get upset” lol! We had such a good laugh.
Although I am absolutely 100 percent delighted that my chemo is now finished, I am going to miss going to Ricky Grant and receiving such loving and caring treatment. I shall be going back, though – I have an appointment in six weeks’ time for port flushing and bloods, and will probably be returning in the future for further blood tests until I am guaranteed clear of the cancer, so I shall be seeing them all periodically, just not on such a regular basis.
I also want to make more things for the chemo people. I have been thinking about this, as I simply love to give things away. There is a box on the reception desk with cards in it that people have made, and I could certainly do some for them in my own style, and I could make other items too. I have gained so much from my six months' attendance on the unit and it would be a nice way to put something back, and also an opportunity to call in every now and then and catch up with everybody. [I have subsequently been taking in home baking to share with people having their chemo.]
My hubby took me home after this, and I really wasn’t feeling too bad. I managed to eat a nice evening meal, and while I do feel slightly peculiar, and have had a little peripheral neuropathy in my hands after touching something cold, it is not there in a big way and I haven’t resorted to my gloves. Like last time, I may find that week 1 is pretty good, and I may crash again in week 2, but we shall see.
I think that already, the effects are less severe because my whole attitude has changed now that the treatment has finished. I am feeling so good that phase 3 of my journey is now at an end (phase 1 being preparation for surgery and then the actual operation and hospital stay; phase 2 being learning to manage Kermit, my stoma, and phase 3 being the chemo). Phase 4 can now be called “the recovery phase” when I can really concentrate on getting well. I am convinced that I am going to be OK now; they are all very optimistic at the hospital that all the cancer has gone. I shall do my best with eating the right foods to help my body expel the residue of toxic chemicals from my system, and my positive attitude and determination will also help me along the way.
What a journey this has been! Phase 4 will include the CT scan and further blood tests in the next 4-6 weeks, and then ongoing for the next five years. At some point I shall have to go in to have the port removed, but they will most likely leave it in for a while until they are sure it won’t be needed any more, and this means I shall have to return to the Ricky Grant unit for it to be flushed every six weeks if it has not been used. However, during phase 4, I shall be concentrating on getting my life back on track at home, and gradually taking on my previous roles on the domestic front, relying on my hubby on the days when I am feeling not so good – he has had plenty of practice and I am sure he won’t mind stepping into the breach when necessary. I am not intending to rush into doing too much and setting myself back, but I shall be sensible and continue to listen to my body.
Amazingly, today on my main blog, the “Daily Blessing” in my side bar has come up with this:
Friday October 16, 2015
Brethren, I count not myself to have apprehended: but this one thing I do, forgetting those things which are behind, and reaching forth unto those things which are before, I press toward the mark for the prize of the high calling of God in Christ Jesus.
Saturday 24th October 2015
Week 2 of my Final Cycle
I realise I haven’t updated this blog page for over a week! After the final treatment, I really didn’t feel too bad during week 1 of the cycle, which was what happened after the penultimate treatment, but then crashed at the beginning of week 2. For the past couple of days I’ve been feeling really rough again. However, I know from experience that this will only last until the beginning of next week, when I shall start to pick up and feel a lot better. I’m already starting to feel a bit better this evening than earlier in the day. I had a good rest in bed for half the morning and haven’t pushed it today, but just rested on the recliner. This evening I even managed to do a bit of drawing.
The knowledge that I have not got to face another treatment just when I am feeling better, and have to face the prospect of being cast down again, is really, really helping, too! As soon as I am past the day when I would have been having another treatment had I not finished, I know I will make real progress towards getting back to my “normal” state of health (whatever that is, with the M.E.!).
I had a letter on Friday from the hospital, with an appointment for my CT scan, which will be in the afternoon of Thursday 19th November, which is good. The results will be with the oncologist by the end of the month, when I am seeing her again.
Kermit is a bit upset with me at the moment and playing up a bit and being very over-active, but I keep reassuring him it’s only the chemo and he will start to feel better in a few days! Generally speaking he’s been pretty good throughout. At the beginning of the chemo he produced a great deal of very runny output, but these days it tends to be on the thick side, with an awful lot of gas, and my tummy has been terribly gurgly and noisy. I’m just glad I’m not well enough to be out in public at the moment because I’m sure I’d be getting some funny looks!
Today someone on one of the forums I am on told me that life had given me lemons, and I had made champagne out of them! Wasn’t that a lovely thing to say? So, I raise my glass of champagne to you all – everyone who has supported me throughout my journey, and are continuing to do so – and say, “Bottoms Up!” Sorry about that... couldn’t resist.
Onwards and upwards now!
Sunday 25th October 2015
Another Not-So-Good Day
Today I felt quite rotten. Very wiped out, and my balance is very poor, and the peripheral neuropathy was back with a vengeance, necessitating the gloves again... Also, my hands started to seize up again, which is an effect I haven’t had since about mid-way through my treatment. This morning I felt a bit nauseous but this was dealt with by my pre-lunch anti-sickness pills (domperidone). I have eaten well today, but have had a horrible taste in my mouth all day. I went to sleep this afternoon while my hubby was out and he came home to find me in the semi-darkness on the recliner!
Chemo brain... Last night we were supposed to change the clocks. I completely forgot about it. This wouldn’t be the first time, of course, but this time I didn’t realise until this evening when my hubby made a chance remark about it! Of course, he remembered, and didn’t say a word to me, and took himself off to church at the correct time, and this evening he told me (very superior as always lol!!) that some people had turned up an hour late for the service! Anyway, I got through the whole day not realising I was an hour out of sync with everyone else, didn’t notice that it was a lot darker than usual at tea time, and didn’t even bat an eyelid having meals at the wrong time. I simply didn’t notice! Honestly, I am not fit to be let out on my own at the moment! It’s a good thing I’ve got my lovely hubby looking after me (even if he doesn’t tell me anything!) or they’d probably lock me up.
Anyway, my time over the past few days hasn’t been entirely wasted, however I might be feeling. I’ve managed to do some drawing, designed a leaflet, and looked up some stuff on the Internet that I needed to find out.
I’ll be over this soon. It can’t come soon enough!
Tuesday 27th October 2015
Week 2 of Final Chemo Cycle, and Forthcoming Appointments
I continue to feel wiped out and suffer the ongoing effects of my final chemo session. It’s strange how with the reduced dose, this seems to have been delayed until the second week, rather than being at the beginning as previously. All I can think is that it is taking longer to come out and reveal itself.
Very wiped out, no energy, peripheral neuropathy, horrible taste in my mouth, etc. etc. Kermit continues to be very busy producing a lot of output and gas, and making me constantly aware of his presence, which he doesn’t usually do.
I have to remind myself, “Don’t fight the chemo, fight the cancer!” and if I am feeling it, it means it is still doing its stuff. As it continues to mop up any rogue cancer cells there may be floating around my system, it is also gobbling away at fast-growing non-cancerous cells, which is why I feel so poorly. This is the final time, and I must take courage from that! I am now half way through the three weeks, and can anticipate starting to feel better in two or three days’ time, so I have to hang in there, and remain positive.
On Friday I phoned the stoma clinic to see if they could fit me in on Thursday morning when I am due to see Mr. Pullan about my rectal discharge. They promised to phone me back but were very overstretched and understaffed, and I didn’t hear anything until today. They say they can fit me in, and all I need to do is tell reception when I arrive, and they will be available once I come out from seeing Mr. Pullan. None of it should take too long.
The reason I want to see the stoma nurse is that recently I have noticed that my body has changed shape again and the moat around Kermit seems to have disappeared. Where the convex flange of the bag sticks onto my abdomen it is now leaving a reddish mark – not sore or anything, but it may be indicative that the bag is now putting undue pressure on my skin, and it may be that I no longer require a convex flange. I need to see the stoma nurse so she can have a look at it, and she will know whether I can return to flat-backed bags. It is now 7 months since my operation and I thought my body had stopped changing shape, but apparently not!
I have also noticed with the last two bag changes that there had been a bit of seepage of output underneath the flange. I am surprised there was no skin irritation, but it has been fairly thick output recently, and that may be something to do with it. I shall tell the nurse about this and see what she has to say.
When I spoke to the nurse on the phone today, I mentioned that I would like to go on their register of volunteers who are willing to meet with newbies and encourage them through their initial stages, pre- or post-operatively. I am managing so well now, and although I’m only seven months into my stoma journey, I know that I can encourage others on this path, and reassure them that it will get easier, and help them to come to terms with having a stoma. It is a huge change, and can be very frightening and daunting, but once one gets through the initial teething problems, there is no reason why one cannot live as full and normal a life as one did before.
Even though I have finished my chemo, the appointments keep on coming! My CT scan is on Thursday 19th November, and then I’ve got bloods and port flush at Ricky Grant on 27th, and my oncology appointment with Dr. Lo on 30th November, when the results of the scan should be back, and hopefully I will be given the all clear. Until they remove the port, I will have to attend Ricky Grant to have it flushed every six weeks. At least I am not having two or three appointments every week these days, which eases the burden on my hubby a bit.
Thursday 29th October 2015
Two Hospital Appointments
This morning my hubby took me in for two appointments at Hutchings Ward Outpatients on Level 8 – my old stamping ground where I always saw Dr. Johnson, my gastroenterologist, before my operation to remove my colon, and subsequently for stoma clinic appointments, and where Mr. Pullan, my surgeon, has his outpatient clinic.
I was due to see Mr. Pullan this morning but apparently he was away, so I saw his registrar instead, who was equally charming and helpful. I told him about the rectal discharge problem I’ve been having, and he said he’d like to take a look. He said there was a fair amount of gunk in there, including some pus, which I didn’t like the sound of. After poking around with his finger, he asked the nurse to hand him a proctoscope and he managed to get quite a bit of the stuff out out, but was unable to see clearly what was going on because it was messy in there. He couldn’t feel any lumps or anything, so it seems as if there is no ulcerative colitis or anything else going on. However, he did take it seriously and said he would be talking to Mr. Pullan about it, and it may be necessary for me to come in again for a more thorough examination of the area. I told him how painful it was, using the Micralax mini-enemas, and also the glycerin suppositories, and he said it was obviously quite sensitive in there. He agreed that the bleeding could have been been brought on by the chemo, which does affect the delicate peripheral blood vessels and mucous membranes of the body. While he agreed that enemas may be the way forward, it wasn’t necessarily very practical if it is so sensitive, and the proctoscope was the best way to clear it, but obviously I could not do this at home.
He said the area was clearly quite sensitive, and this was fairly common in view of all that had been done in the rectal area. He said that Mr. Pullan had done a very nice job, and the rectal stump was of minimal length – only about 1.5 inches. I think it is surprising just how much stuff comes out if it is that short! I asked how long I could expect to have mucous discharge and he said that it could go on permanently because the mucous membrane lining the rectum and colon produce mucus to aid the passage of stool, and normally one would not notice this as it would come out when one opened one’s bowels, but once this was no longer happening, the mucus would go on being produced and would be more noticeable. However, it may diminish with time; presumably the body starts to recognise that it is no longer required. Some people have a lot of trouble with mucous discharge, while others are not really troubled by it.
I mentioned to him the intermittent pain I had had in the peristomal area and my lower abdomen. He had a look at Kermit through the viewing window in the bag and asked if all was well there, which I confirmed it was, and then he gently palpated my abdomen and said there was no sign of a hernia, which was reassuring. People with stomas are more at risk of developing hernias because the abdominal muscles have been compromised with the formation of an opening through the abdominal wall, and it is important to guard against the formation of a hernia if at all possible – prevention is better than cure! I told him I was due to see the stoma nurse immediately after seeing him, and was going to discuss support garments. He said he was pleased at how the operation wound was looking and how well it had healed.
He said the pain was probably due to the formation of scar tissue in the area post-operatively. He said that there was a lot going on in that area because I’d already had a hysterectomy, and there could well be adhesions which might cause some discomfort, but it was nothing to worry about. I have noticed that the pain tends to be present only when I haven’t got anything holding the bag in place, such as the wrap; there is a pulling sensation, so I think the support underwear is going to help with this as well.
He went to do some paperwork and came back and said I’d be receiving an appointment for my CT scan soon – I told him I’d already received the appointment for this, on 19th November, so he said he’d cancel that request, and was glad that it had come through already.
All in all it was a very satisfactory appointment, and I came away reassured.
We then went in to see the stoma nurse, and I have written about that appointment on my Gutless Bag Lady blog:
As a result of these two appointments, I now have another, and possibly two, appointments forthcoming – one with the girdle-fitting lady for hernia prevention, and a possible further appointment with Mr. Pullan. They are certainly continuing to look after me very well!
As far as how I am currently feeling is concerned, I’ve definitely felt better today. OK, I did have a sleep this afternoon, but I think that was as much to do with not having slept well last night, and also being out all morning, as much as it being chemo fatigue. Tomorrow it will be a fortnight since my final chemo (where on earth do the days go, so quickly?) and I should definitely be picking up as I enter week 3 of the cycle. Soon all the horrible effects will be a thing of the past!
Tuesday 3rd November 2015
Not Pulling Out of This Yet
I am now over half way through week 3 of the final cycle of my chemo, and feeling a bit fed up, because normally by this stage I’m really picking up and able to enjoy feeling more normal in week 3. I continue to feel wiped out and have a horrible taste in my mouth. It’s as if the chemo knows it’s been the last time and is reluctant to depart my system and leave me in peace! I know, I know, it’s been doing a good job, and I must continue to remember that, and not fight the chemo but fight the cancer, and be thankful! It’s hard though, because I am used to feeling better by this stage and had really hoped I’d be doing some stuff this week.
All I seem to have managed is to get some photos back on my early blog posts. They disappeared as a result of my letting my Photobucket pro subscription lapse. When I started my blog, all the photos were linked to that site, but more recently, I’ve uploaded them directly from my hard drive so they are more secure and reliable! No more trouble with broken links. I could do this repair job from the comfort of the recliner but I haven’t had the energy even to do any drawing.
C’mon, chemo, time to leave! I want to start cooking again, and doing all sorts of other fun stuff!
Monday 9th November 2015
Getting my Life Back
At long last I am starting to feel better! The final chemo just over three weeks ago certainly made its presence felt and the effects went on well into week 3 of the cycle, which was unusual because with previous treatments, by week 3 I was always feeling a lot better. It was doubly surprising that it went on so long, because the final treatment, like the penultimate one, was at a reduced dose. I am still getting peripheral neuropathy, mostly in my feet now, which is strange because I’ve had more trouble with it in my hands previously – it seems to be there a lot of the time, giving me feelings of numbness and pins and needles, particularly in my toes, and it seems unrelated to cold, too. I shall mention this to the oncologist when I next see her.
I have now started to pick up the threads of my life again, doing some domestic tasks. It may sound funny, but I am so enjoying this! It is making me feel a lot more human again, and in control of my life. My hubby has been so wonderful looking after me all this time but I really feel it’s high time I took back a lot of what he’s been doing, and started looking after him again after so many months.
Here are the “firsts” in getting my life back again!
Thursday: I did my first batch of laundry. Since going into hospital, my lovely cleaning lady has been doing this for me, apart from the odd bit of hand washing that I’ve managed to keep up with.
Friday: First lot of ironing.
Saturday: I got up and got my own breakfast for the first time. Since my operation, my hubby has been bringing me breakfast in bed. First washing up – I did the breakfast things! A gentle introduction. I also finished the ironing. I sorted the larder cupboards in the kitchen and made a list of what we’ve got, and what we need. I started making my first shopping list for the online order I shall be doing in the coming week.
Sunday: I went to church for the first time since May, when I had recovered sufficiently from my operation, just before I started my chemo. I was quite overwhelmed by the lovely welcome I received – everybody was surprised and delighted to see me back and I got a LOT of hugs! Everyone said how well I was looking. I would have easily forgiven them for forgetting me altogether, it’s been so long since I showed my face in the place! I washed up the evening meal dishes. Soon I will be cooking the evening meal, too!
Monday (today): I sorted the freezer and defrosted it. Much as I hate having to throw food away, I did have to throw away a bit, because it was too old. Once I’m back in the driving seat as far as the cooking and shopping are concerned, I shall have a proper idea of what we’ve got, and what needs eating first, etc. etc. and this won’t happen again. I have also re-started my diet – I am on the 5:2 diet, where you restrict your diet to a maximum of 500 cals for two days of the week and eat normally for the other five. I had to abandon this, on the advice of my surgeon, in advance of my operation, in order to keep my strength up and allow my body to recover. Although I have gained some weight during this time, I have managed to keep it on a more or less even keel, which I am pleased about, but now it is time to resume the downward trend and hopefully to reach my target weight by next summer.
During the coming week, I’ve got the fridge to sort and clean out, and the small freezer (part of the fridge-freezer in the kitchen). I also need to clean the hob and possibly the oven but I may ask my cleaning lady to do the latter lol!! There’s a box of food out on the counter where my hubby has been putting his food shopping for easy access for his cooking, and this needs sorting and the stuff putting away, and then I can clean that counter, including all the crumbs from the toaster! Tomorrow morning I shall finalise my online shopping list and then do the order in the afternoon, and request the delivery for Wednesday, as I used to do before. I am hoping to cook the first evening meal on Wednesday.
I am also trying to be good, and going to bed earlier than I am used to, so that I can get up earlier. The trouble is, my M.E. messes with my internal clock, and I tend to be mentally alert in the small hours, and do not feel at all ready to go up at midnight! I am trying to go up to bed at 12.30 a.m. at the latest. Since I have been doing this, I have not been sleeping well (waking frequently) which is what always happens if I go up before I feel ready, but this time I am determined to try and educate my body and put up with the wakefulness until it settles down into a new routine.
This whole cancer journey has brought me to a new start in my life, and I am determined to set up good habits from now on. I seem to be at my best for doing things in the mornings, so I am putting my feet up in the afternoons and evenings and not overdoing things. I have been needing a sleep in the afternoons but this may not last forever as I gradually recover my strength.
Wednesday 11th November 2015
Hospital Appointments, and Needing to Pace Myself
Some more firsts: yesterday I did my first online grocery shop, and today it was delivered. It was a big shop, because my larder was fairly depleted, and I also needed new ingredients for the recipes I am keen to try.
After putting the stuff away from the delivery, I suddenly ran out of energy and my idea of cooking supper bit the dust, and my hubby was back in the kitchen again... He is very good, and willing to take over when the need arises, I am glad to say. A bit frustrating, though. I am still very limited by my small reserves of energy.
Yesterday I also cleaned out the fridge freezer – very glad to have done this before the grocery delivery.
I have several upcoming hospital appointments:
Thurs. 12th Nov. (tomorrow): Pre-assessment for my procedure next week.
Tues. 17th Nov.: Appointment with the support garments lady in the stoma clinic.
Wed. 18th Nov.: Investigation of my rectal stump under general anaesthetic, by my surgeon, Mr. Pullan, in the Day Surgery Unit. His registrar was unable to make a thorough investigation at the end of October because it was too uncomfortable.
Thurs. 19th Nov.: CT scan.
Fri. 27th Nov.: Bloods and port flush on the Ricky Grant (chemo) Day Unit.
Mon. 30th Nov.: Oncology appointment, when I am hoping to get the cancer all-clear!
Yesterday I counted up just how many appointments I’ve had at the hospital, and not counting my stay in hospital for my surgery, it has so far been 43! Add on the ones to come that I know about and it’s 49! I have spent a great deal of time there, and my hubby has driven me there every time, and been so supportive throughout.
Following her telephone call yesterday, I had two letters in the same envelope from the appointments clerk at the hospital today, one relating to my pre-assessment appointment tomorrow, and the other to the procedure itself, together with a leaflet detailing what to expect and how to prepare. I’ve got to turn up at 8 a.m. which is pretty early, but I am allowed some breakfast. I will have a fair bit of waiting around, seeing a nurse and the surgeon before the procedure, and then I will have to put on a hospital gown, and my dressing gown and slippers which I have been asked to bring along, and given a general anaesthetic.
Mr. Pullan is going to have a good look inside, and clean out all the mess, and try and see what is going on and what has been causing the problem of the mucous discharge and pus, and the bleeding, but I think the latter is probably most likely to be an effect of the chemo, which can damage small delicate blood vessels – the bleeding has cleared up since I finished my chemo, which rather bears this out. He will be able to keep the proctoscope in for long enough to do this because I will experience no discomfort this time.
Even if I am told subsequently that there is nothing to worry about and the mucus is just something I am going to have to live with, I shan’t mind, because I will be reassured. I am impressed that they have taken my concerns seriously, and are prepared to investigate, even if all that is required is a bit of reassurance. If he does find a reason for it, there is every likelihood that he will be able to do something to help.
This has been the pattern throughout – nothing I have said, however trivial I may have believed it to be, has been poo-pooed, but taken seriously and acted upon.
Finally, regarding my peripheral neuropathy (a side-effect of the chemo), this has been more troublesome and longer-lasting after the final chemo than after any of the previous treatments. Also unusually, it is affecting my feet, which have generally been unaffected throughout, as long as I didn’t walk on any cold surfaces and kept my feet warm – it was triggered by cold. I have noticed that I have been getting ongoing symptoms (partial numbness, tingling and pins and needles in the soles of my feet and toes) quite a lot of the time, unrelated to temperature, and this morning I discovered something extraordinary. I had my first bath for quite some time (I have been showering all through the summer, and I had also lent my bath lift to someone, making it impossible to bath anyway) and the hot water triggered the neuropathy in my feet, big time! This was quite a surprise, and something I need to mention to the oncologist when I see her at the end of this month. It was her concern about peripheral neuropathy that caused her to reduce the dose for my final two treatments, and I certainly didn’t expect this. I am hoping that it will disappear eventually, although there is a danger that it can become permanent – someone on the Inspire forum says he still suffers from it in his feet, two years on from his chemo. I’ve got to hope for the best, though.
Wednesday 18th November 2015
Rectal Stump Examination
We turned up at the hospital at the appointed 8.00 a.m. – an early start. I had an appointment with the nurse first of all, who provided me with TEDs (the elasticated stockings designed to prevent DVTs – deep vein thromboses which can occur when having an anaesthetic and operation). She went through a checklist regarding my general health – all of which, and more, had been covered at my pre-assessment, but I didn’t mind, because it shows how seriously they take it, and how well they look after us. I then saw the anaesthetist who covered some of the same ground, and explained what they were going to do. I asked whether the anaesthetic could be administered via the port-a-cath, but he said they didn’t usually like to do this because of the risk of infection, and any anaesthetic remaining in the device. I said that I could not tolerate having a cannula in my hand as it was extremely painful, and requested it in my arm instead, which he said was acceptable.
There was another wait, and then I was called in, and we went into a side room where I could leave all my stuff, including my wheelchair – the original plan was for my hubby to take this away with him as I was reluctant to leave it unattended in the hospital – it is an extremely expensive piece of kit with its power-assist system fitted, and also, if it is manhandled by people who are not familiar with it, they are likely to damage it – this has happened in the past. I was assured that nobody would be going into that room in my absence until I was ready to return.
After I had changed into the hospital gown, another nurse appeared and helped me onto the bed and put the TEDs on for me. Since I last had them (for my major surgery in March), they have improved the system – they now have a sock-like thing made of slippery material that they put on your foot first, and then slide the TED over this, which makes it a lot easier to put on, as they are very tight. They then pull the sock off through the hole in the toe of the TED, and pull it up to the knee as usual.
I was then wheeled off to the anaesthetic room where I met up with the anaesthetist again, and he inserted the cannula into my right elbow where there is a decent vein. He administered the anaesthetic and the next thing I remember was waking up in the recovery ward, being given oxygen and told to breathe deeply. Hartmann’s solution was administered via a drip (for fluid and electrolyte balance) for a short while. I don’t remember too much more until I was back in the side room again where I had left my stuff. I was left to recover a bit more, and then they brought me some tea and toast – I had not eaten since the previous evening and was ready for this.
I experienced very little pain from the procedure – only a slight ache and discomfort which soon passed, well before I left for home.
Once I was dressed, Mr. Pullan, the surgeon, came in to tell me how it had gone. He said everything went smoothly, and reassured me that there was nothing seriously wrong. There was a little granulation tissue formed around the area where he had stapled off the stump, and this was probably the source of the inflammation and production of pus and mucus. He said he cleaned the whole thing out well, and I might expect to see a little bloody discharge over the next day or two – in fact I noticed this only once, later in the day once I was home. Since then there has been nothing – no blood or mucus. He said we may need to repeat this process in the future should the problem recur, and he would be seeing me again in six months to review the situation generally.
I am highly relieved that the news was so good. I anticipated there being some ulcerative colitis in the stump – before my colon and most of my rectum were removed, the colitis was present throughout. Mr. Pullan said he would be monitoring this. My major concern was that there was cancer there, but Mr. Pullan was able to reassure me that this was not the case.
I was a lot more nervous about this procedure than I had been about my major surgery, which surprised me a lot, but my hubby said that this was only natural, because with the surgery, we knew the reason for it, and what the outcome would be, but with this procedure, we did not know what to expect, and the uncertainty would naturally make me more anxious. I didn’t think it was as cerebral or logical as that – somehow I was having a more visceral response to it which I could not explain.
Anyway, it is all over now, and I have been reassured that there is nothing seriously wrong, and I can deal with any further production of mucus without further worry.
When we got home, I went up to bed and my hubby resumed his kitchen duties for the rest of the day, and brought lunch, and then supper, up to me on a tray. I stayed there for the rest of the day and slept for much of the afternoon as the effects of the anaesthetic wore off. I felt extremely weak and unsteady on my feet whenever I got up. I did not sleep well during the night (probably having had too much sleep during the day) and ended up reading for over two hours during the small hours, but was able to get up at a reasonable hour in the morning, and felt tons better.
Thursday 19th November 2015
Back Through the Stargate Again
This afternoon I went in to the hospital (third day running!) for my CT scan. The first time I had this was shortly after my cancer diagnosis, and my first impression of the scanner was that it looked just like the Stargate in the TV series “Stargate SG-1” – a portal through which the team could pass to visit distant planets. See my earlier entry (30th January) for pictures!
This time, I was not given the dreadful aniseed contrast fluid to drink, but a jug of water which had to be consumed over the next 45 minutes. I was told that the contrast medium was now administered intravenously.
On arrival I was given a brief questionnaire to fill in, about my general health, allergies, etc. etc. and then given the water to drink. One this was finished, I was taken into the scanner room, told to lie on the scanner bench, and the cannula inserted in my arm. I was a bit concerned that they might not find the vein, having had the same procedure yesterday, and there was some bruising around the site, but all was well.
The cannula was flushed with saline, and then the contrast medium was administered, causing the usual flushing sensation and the feeling that one had wet oneself! I was then posted through the scanner a couple of times for the test run, obeying the recorded instructions to breathe in, hold my breath as the scanner worked, and then breathe normally.
The radiographer and the nurse returned, made a few adjustments, and then retired again as the actual scan took place. Nothing different from last time.
I was soon out, and told to return to the waiting room for about 10 minutes, after which I was called again, and taken into another room where the nurse removed the cannula, and then we were free to go.
We now await the results, which we will no doubt hear when we next see Dr. Lo, the oncologist, on 30th November. I have to have bloods taken on the Ricky Grant Day Unit on 27th November, and she will have those results as well. Hopefully the verdict will be that I am cancer free, and that they can then remove the port, and I should be fine.
Saturday 21st November 2015
Since finishing my chemo over a month ago, my peripheral neuropathy has been getting steadily worse. This is one of the side effects of oxaliplatin, the chemo I was on, and the effect they are most concerned about, because there is a danger that it can become permanent. Dr. Lo, my oncologist, said that the only way to mitigate this was to reduce the chemo dose, which she did for my final two treatments, for this reason.
During the course of the treatment, the PN was triggered by touching anything colder than myself. It was worst during the first week of each cycle, gradually diminishing in week 2, and virtually or completely absent by week 3. When at its worst, I protected myself by wearing gloves, and being careful to avoid walking on cold floors with bare feet. It was always worse in my hands than in my feet, probably because my feet were better protected against contact with cold.
Since the end of the chemo, however, the PN has intensified, and it no longer seems to be affected by cold. It is present all the time, and it feels different too. My fingertips, my toes and the balls of my feet are now numb, and my feet especially are quite tingly – it is worse in my feet than in my hands. I am experiencing a burning sensation in the soles of my feet today. Strangely enough, a week or two ago I decided to forego my usual shower and have a soak in a hot bath instead, and to my amazement this set off the PN in my feet big time, with major pins and needles! So, contrary to previous experience, it was triggered by heat, not by cold.
This is something I am definitely going to be discussing with Dr. Lo on 30th November at my next appointment.
Friday 27th November 2015
Bloods and Flushing at Ricky Grant
Today was my appointment at the Ricky Grant Unit (where I had my chemo) for my port to be flushed and for bloods to be taken in advance of my appointment on Monday with Dr. Lo. As soon as I arrived, Emma (my favourite receptionist) who was on the desk, came round and gave me a huuuuge hug! What a lovely welcome! While I was waiting to be seen, she and I had a lovely chat. Everyone was very pleased to see me and they all said how well I looked, and asked how I was. It is such a friendly place.
I asked Emma if there was an email address I could send that wonderful photo to – that my hubby took just after I’d finished my chemo – and she gave me her work email, and I have now sent the photo on, so that she could show it to everyone.
No problems with flushing the port or getting blood. The port has to be flushed every six weeks if it is not used, and I have now got an appointment for early January for this to be done again, if I still have the port in place – after Monday we will know whether it will still be needed or not.
Very tired on my return so I had a good sleep this afternoon. I have been very tired all week, ever since my marathon 3-days-in-a-row appointments last week, and my creative mojo has fled (hopefully temporarily) – I haven’t been pushing things but resting, and continuing with the cooking which I am enjoying. I think I am feeling a bit unsettled in advance of Monday and the results of my scan, which is making it hard for me to concentrate on anything much.
Monday 30th November 2015
Oncology Appointment and the Result of my CT Scan
We saw Dr. Lo, my oncologist, today and she confirmed that the result of my CT scan shows that there is no sign of any cancer in my body any more. My hubby is feeling quite emotional about it all, but so far I’m not really feeling anything, which is a bit weird and unexpected – maybe it needs time to sink in. We are planning a celebratory meal (or two!) over the coming days, by which time I hope I shall be feeling more over the moon about it!
Part of how I am feeling is due to the fact that I am still suffering pretty horrendous peripheral neuropathy, and also, I have a friend who also saw her oncologist today, to get the result of her scan – I have not yet heard back from her, and I am anxious in case she has had bad news and is too upset to contact me! I know I shouldn’t worry, and it may just be that she is fine, and too busy out celebrating! Still, I can’t settle till I know whether she’s OK or not.
Dr. Lo says that I have to see her every six months for the next two years, and then for the final three years, once a year. I have to have a scan in a year’s time, and occasional blood tests, and if all is well at the end of the five years, I can consider myself discharged and cured! It all takes a bit of getting used to after everything I’ve been through this year.
It is also going to take a while to get used to not going to the hospital all the time. Not counting my stay in hospital for my surgery back in the spring, since this journey began back in January, I have now had 49 appointments! The place has become like a second home and suddenly not going so regularly is going to feel very strange indeed. I have received such amazing care, given with friendliness and even love, and part of me is going to miss being the object of such attention. I think I am looking at a period of readjustment from now on.
I feel so strange about this – my reaction is not at all what I expected to feel. I am wondering whether other newly declared cancer-free people feel this way? I almost feel guilty for not feeling completely over the moon about this, and a bit confused that there should be any conflicting emotions at all! I think there may also be an element of survivor’s guilt somewhere in there, too – knowing only too well that for some, my good news may make certain people feel worse about their situation, and I would hate to be responsible for that... Maybe I’ll have a more sensible reaction once I’ve had a chance for this to sink in a bit.
While having my chemo (oxaliplatin), I experienced the normal cold-induced peripheral neuropathy which was most acute at the beginning of each cycle and by the third week, had virtually disappeared.
After I completed my chemo just over six weeks ago, I began to develop the persistent sensory peripheral neuropathy experienced by a significant percentage of people. This was quite a surprise to me until I did some online research into it. This PN is of a different quality. To start with, it does not seem to be induced by cold contact, but is present all the time. Also, during my treatment, I had relatively few problems with my feet, as long as I protected them and did not walk barefoot on cold floors – I experienced it mostly in my hands. Now, however, I am experiencing it more severely in my feet. The soles of my feet and especially my toes, are now numb and tingling all the time, as are my fingertips. The PN affecting my mouth and throat is no longer present since stopping the chemo; this does not seem to feature in the persistent variety.
Since the onset of this new type of PN, it has gradually become worse and more noticeable, which is also apparently quite normal. Most people seem to experience a worsening, after which it either decreases and ultimately disappears, or becomes permanent.
On Saturday afternoon I noticed something new. I was sitting on the recliner at home, and bent my head forward for some reason, and suddenly became aware of a brief explosion of electric-shock sensation in both feet. I repeated the movement with my head, and there it was again. I was aware of this neurological sign from my researches into such things several years ago when I was in the process of reaching a diagnosis of my M.E. This effect, known as Lhermitte’s Sign, is very common with people with M.S., and it often affects the whole of the spine and all four limbs, so I reckon I am getting off lightly with it affecting only my feet! I did some further online research and found that it can be caused by a variety of conditions and injuries, including the neurotoxic effects of certain chemotherapy drugs, such as oxaliplatin, but this latter scenario is quite uncommon.
Recently when I saw the stoma nurse at the hospital, I mentioned a concern I had about problems with emptying my bladder completely, and she put it down to the aftermath of surgery, when various muscles had been interfered with, and that it should pass in time. During the course of my researches into Lhermitte’s Sign, I found it associated with this very problem.
I mentioned both these problems to Dr. Lo today, and the fact that both are associated with damage to the dorsal root ganglia – where the spinal nerves connect with the spinal cord, part of the central nervous system. Interestingly, there is no involvement with the rest of the CNS (the brain) because of the effectiveness of the blood-brain barrier protecting the brain from the platinates in this type of chemotherapy. The dorsal root ganglia have no such protection.
My oncologist said that she had never had a patient who experienced Lhermitte’s, but one of her colleagues had had one patient who did. It is pretty uncommon, and does not feature hugely in the literature.
She said I should monitor this, and the PN in general, and if it continued to get worse over the coming months, and if it did not diminish in a few months’ time, I should make an appointment to see her again to discuss it; she said it may be necessary to get the neurologists involved. I wondered whether my existing neurological condition (M.E. – Myalgic Encephalomyelitis) might have a bearing on why I should experience these rare effects. Speaking to a member of our church congregation yesterday, who is a doctor, she said she had never had a patient with M.E. who had also been treated with oxaliplatin, and did not know how the two might interact with one another.
When I was undergoing neurological tests prior to my M.E. diagnosis, when they were eliminating other diseases such as M.S., my nerve conductivity was tested with evoked potentials (the results were normal) – people with Lhermitte’s and an atonic bladder resulting in urinary retention, caused by damage to the dorsal root ganglia, exhibit abnormal results with slower nerve conductivity on this test.
There is every hope that these problems will resolve in time, but we know that quite a significant percentage of people experiencing neurological symptoms after stopping oxaliplatin and other platinates do not recover. I can only hope I am in the right percentage!!
Trust Shoshi to be different...
I find all this absolutely fascinating.
A happy thought struck me today, which made my oncologist laugh when I told her. We know that heavy metals are neurotoxic. I am just glad they didn’t pump me full of lead – a base metal – but went for platinum, which is the most precious – it’s more expensive than gold! Only the best for Shoshi!!
Tuesday 1st December 2015
I am still processing the good news we received yesterday, that I am cancer-free. It is going to take time for me to make the transfer from my status as patient (VIP receiving wonderful care and attention and being continuously affirmed) to cancer survivor, normal person (ordinary). This is not something I had even thought about before, although I should have been forewarned by one of the nurses on the Ricky Grant chemo unit when she said that many people really miss coming in for their regular chemo once it is all over. I said, “Oh no, not me – I can’t wait for this to be over!” but I now realise what she was talking about – there is almost a sense of bereavement when all the hospital appointments stop and one emerges from the bubble where one is so valued and so beautifully cared for. This could explain why I am feeling quite fatigued at the moment, and also fairly low in spirits. This “bereavement” is combined with a reaction to everything that’s happened this year, together with the “closing statement” that I am now cancer free, and also a normal M.E. reaction to emotional and/or physical stress. What a rollercoaster of a year it’s been, and now that it’s officially over, it is all catching up with me. No wonder my creative mojo has totally fled for the moment!
This evening my hubby and I went out for a celebratory Chinese meal, during which I tried to explain to him the conflict of emotions I am experiencing at the moment, and how I wish my response to our good news could be the uncomplicated joy and relief that he is experiencing – I told him I was so happy for him that he felt this way, and how right it was. I think he understood that there were other issues where I was concerned, which I need to process and come to terms with before I make the final adjustment.
My main message for today, I think, has to be that I originally thought that the news that I was cancer-free would be the cut-off point marking the end of my cancer journey which has lasted for most of this year, but in fact it is not a cut-off point at all, but just another stage on the ongoing journey.
I always considered my journey this year as falling into four stages:
1. Diagnosis and preparation for treatment;
2. Surgery, and recovery from it;
3. Learning to manage Kermit, my stoma;
4. Chemo, and recovery from it.
After this I was anticipating being told that I was cancer free (which I was), and then I could consider the journey to be ended, and I could rejoice and celebrate, and then move on and get my life back. Period.
However, the journey doesn't end with 4 above, but continues with:
5. Adjustment to my new situation, reviewing and consolidating all I have experienced since mid-January, facing and processing complex emotions and dealing with them, shedding the negative ones and embracing the positive ones, and gradually moving forward into my new normal life.
Looking at it this way, there is no cut-off point at all, but a gradual transition. Over the coming months and years, during which I shall have further blood tests and scans and occasional appointments with the oncologist, which will create their own anxieties and throw-backs which will have to be dealt with, I will gradually progress from patient to ordinary person and all of this year’s experiences will be internalised and hopefully forge my character more strongly and help me become a better person.
I am quite glad that I was diagnosed at the beginning of this year, and that being declared cancer-free came towards the end of the year. This makes 2015 into a nice neat package containing the visible part of the journey, and with the advent of 2016 I can embark on a new beginning with a fresh year in which to deal with Phase 5.
In my body will be the continual reminder of what I have been through, in the form of Kermit, and possibly the peripheral neuropathy if it is ongoing, and I want to use these to keep me on track, reminding me to count my blessings daily, and also never to take anything for granted, and to be grateful for all that has been done for me to save my life and turn me from victim to survivor. For neatness’ sake it would almost be good if the peripheral neuropathy did remain, because then I would have two separate reminders: Kermit would remind me of my life-saving surgery, and the neuropathy would remind me of my life-saving chemo. No – not really lol! I shall be very glad to be rid of the PN!!
I am not saying I want to dwell in the past, but rather, to take the important experiences of the past and bring them with me into my present and future and use them for my benefit and for the benefit of others.
Monday 18th January 2016
A Whole Year On
I have just realised that it is six weeks since I added anything to this diary. I have had a busy time (lots of socialising and meals out – great fun), not to mention Christmas, all interspersed with periods of pretty severe fatigue (not surprisingly), and it’s been a time of mental and emotional adjustment after being given my cancer all-clear. I am now feeling a lot better and more integrated with myself in my new role as a cancer survivor, and still struggling with the absence of my creative mojo although it has returned in small measure. I have been busy tidying my studio and trying to restore it from being a dumping ground. I am very behind with all my office work but did manage to make a start on last month’s accounts today.
I went back to the Ricky Grant Unit on 8th January for my port to be flushed. There is still no sign of an appointment to have it removed, and if it is not in use, it has to be flushed every six weeks. I took the opportunity to make some cakes for the chemo-ites who were in on that date, and also a dozen cards that I’d made for the unit to sell (full details on my main blog). All the staff said how well I looked.
After lunch I went to the Lodge (cancer info and drop-in centre) for the monthly relaxation session and met up with the other two members of the Allerton Three (the three of us who met and became friends recovering from our bowel cancer surgery on Allerton Ward). We had a lovely get-together and a good laugh (as usual!) and have planned a girls’ lunch out in early February.
Cancer Diagnosis Anniversary and a Colonoscopy for my Hubby
Tomorrow is the first anniversary of the colonoscopy when my cancer was diagnosed. It feels very strange that it is exactly a year on. Stranger still is the fact that tomorrow, a year on to the very day, my hubby is having a colonoscopy to investigate his altered bowel habit. We are both hoping and praying that he is not about to embark on a similar journey to mine. Tonight he has successfully accomplished phase 1 of his preparation. Whereas I had Picolax which incapacitated me with severe diarrhoea continuously for the whole day before my investigation, he is having Moviprep (sounds like getting ready to go to the cinema!) which is taken in two sessions. Each one consists of two sachets which have to be dissolved in a litre of water and drunk in four 250 ml glasses over approximately 2 hours, together with 500 ml water. The diarrhoea is confined to a period of about 2 hours, and my hubby started about 20 min after drinking his final glass. He has done very well so far and I have tried to keep him going after his final meal, a low-fibre lunch consisting of chicken and mashed potato, by plying him with clear chicken soup, white grape juice and herbal teas! I am trying to vary his fluid intake to make it more interesting, in the absence of any solid food from 1 p.m. today (after lunch) until after the procedure.
Tomorrow it’s an early start for us both. I have to set my alarm to give him the first glass of his second dose of Moviprep at 6 a.m. He should be well past the second bout of diarrhoea before we set off for the colonoscopy at 2 p.m.
Kermit, my stoma, is now 9 1/2 months old! How time flies. Everything continues to go well. Tonight, for the first time ever, I noticed a small stain on my underwear and immediately thought I might be experiencing a leak, but found instead, to my surprise, that there was a tiny hole in the seam of the bag. This has never happened before – I have heard of people having faulty bags but Coloplast’s track record has been very good indeed for me in this regard. I immediately changed it, and was quite glad in the end, because Tuesday is my normal bag-changing day (along with Friday) and tomorrow, with my hubby’s colonoscopy, I’ve got enough to contend with, without having to worry about Kermit! I was also very glad that it appeared today, one of my twice-weekly fast days on the 5:2 diet, when Kermit is a lot less active because I’ve eaten considerably less, and also it was during the middle of the day when he is very inactive anyway. I would not have been happy with a major explosion of a full bag!!
After the recent procedure under general anaesthetic to clean this out, it has been a lot better. Over the past few days, however, I’ve been getting bloody mucous discharge again, but so far am able to get rid of most of it by anal stimulation and wiping with toilet paper. Mr. Pullan, my surgeon, did say I may need it clearing out again in the future, but so far I don’t think it warrants that. I am monitoring it for now. [Subsequently: this did not last for long and I have ha no problems since.]
I have been informed that three months after finishing chemo, the persistent variety of PN is likely either to start clearing up, or to remain the same, or get worse. Tonight my hands are definitely worse, with some weakness and pain and altered sensation in my thumbs. My feet remain as bad as ever, as does the Lhermitte’s and the urinary retention. I am monitoring it carefully and if things get worse I can contact Dr. Lo for an earlier appointment than my scheduled one six months after the last one, and a neurologist’s intervention may be required – not that much can be done, a far as I am aware.
Tuesday 19th January 2016
My Hubby’s Colonoscopy
The anniversary of my final colonoscopy and my cancer diagnosis, today was my hubby’s colonoscopy. All went well, and we both went into a small room with the nurse once he had recovered and had his cup of tea. We were reassured that his problem is not too serious – he has a patch of diverticular disease on the left-hand side which has been causing his symptoms, and the nurse said this was a sign of an “ageing bowel” (poor chap!). She said that if he took Immodium (loperamide) each day this should reduce the symptoms. It was normal to experience some pain. Contrary to the thinking in the past, there is now no suggestion that he should alter his diet in any way, as there is no evidence to suggest that seeds and nuts would get jammed in the small pits caused by the disease; the only suggestion was that he should eat plenty of fibre and drink plenty of fluids to keep things moving – but this is good advice to anyone, to maintain a healthy diet.
The first question I asked the nurse was whether there was any connection between diverticular disease and cancer – i.e. is there an increased risk of developing cancer because he has it? She reassured me that there was no connection; it is not like ulcerative colitis or Crohn’s. What a relief. One bag person in the family is enough – however, if he had had to have a stoma, there was only one name he could have chosen – Miss Piggy! We are happy to report that Miss Piggy remains in the realms of our imagination and Kermit will have to continue as a solo act.
I am writing this on 8th March – I haven’t updated this diary for some time so thought I’d better catch up a bit! Since his diagnosis, my hubby has done pretty well and his symptoms, while still present, are reduced. He found a single loperamide capsule each day was too much, so the GP has put him on Fibogel, which is a powder you dissolve in water and drink, which he says tastes like that powdered orange juice we used to have years ago! He also has some loperamide tablets that can be cut in half if he needs those.
Friday 19th February 2016
Port Flushing and General Progress
Again, writing this on 8th March.
Back to Ricky Grant to have my port flushed, for the last time. They are always very pleased to see me and they all said how well I was looking. Again, I took some cakes in for the chemo-ites and had some nice conversations with various people. It was a fairly quiet session with not so many people in as usual so I shared the rest of the cakes with the nurses.
I think this is beginning to improve slightly, at last. My fingers are definitely a bit better, but my feet remain as badly affected. The Lhermitte’s is much improved and there’s only a little trace of it left. The urinary retention remains the same, and I have noticed a tiny amount of dribbling after I’ve finished – if it doesn’t improve by the time of my appointment with Dr. Lo in June, she may want to refer me to a urologist, but there’s another 3 months to go so by that time things might have improved.
Everything seems to have settled down just fine in this area, and apart from a little bit of discharge a few weeks after it was cleaned out, I have had nothing since, so I am hoping that the procedure, coupled with the end of my chemo, has sorted the problem once and for all.
While I was still undergoing treatment, I liked to think of myself as a cancer warrior rather than a cancer sufferer. I am feeling well adjusted to my new status as cancer survivor now – in fact I’d prefer to call myself a cancer victor! Last month I found myself thanking God that I’d had cancer! I know this sounds really weird, but I had ulcerative colitis which was a real pain, and I frequently had to drop everything to rush to the loo and quite often I wouldn’t make it in time... The colitis wasn’t bad enough (especially after the medication improved things) that I would ever be likely to end up with a bag, which meant that I would have to go on like that for the rest of my life. Then along came the cancer and the decision was made. After a normal initial teething period with Kermit, which wasn’t easy, I soon settled down and found that my life was completely changed, and for the first time for years, I felt in control of my life, and I simply haven’t looked back. If I were to have my time again, I wouldn’t change a thing. So I am GLAD I had the cancer because it has given me my life back in more ways than one!
I am currently feeling a lot better than I have felt for a very long time. I am glad this has coincided with a period when I seem to be very busy! I do get very tired in between my various activities and find myself collapsing on the recliner and not being able to keep awake, but I can put up with that. On days when we are not so busy, I am having a lie-in in the mornings and not pushing myself. I have been back to the Lodge (the cancer support and information centre at the hospital) for a couple of relaxation sessions which make us all feel great, and I’ve made a couple of new friends there, and my friends from our hospital stay try to make it as often as possible too, so it’s a nice opportunity to get together and have a chat over coffee afterwards.
Tuesday 8th March 2016
The Deportation of Shoshi
I’ve been deported… It’s OK, I’m still living in the UK, safe and sound, but today my port-a-cath was removed. I had to go in to the Day Surgery Unit at the hospital and it was removed under local anaesthetic. When I first heard that I wasn’t going to have a general, I was a bit scared, and phoned up to find out exactly what would be done, and was reassured that they do this all the time, and I would not feel it, and a nurse would be by my side to reassure me throughout.
After a session with the nurse where she checked my details and whether I had allergies, crowns, metal implants, etc. etc., I went back and sat with my hubby in the waiting room until I was called to go and change into a gown. I put my bag of clothes in a locker and pinned the key around my hospital wrist band. After this I sat for about 5 minutes in another waiting room until the surgeon was ready for me and I went to the anaesthetic room adjoining the theatre, where I got onto the couch. At this point the nurse took my wheelchair and said it would be safe in the recovery room. They gave me the local anaesthetic and then I was ready to go in.
The whole procedure was a lot easier than I’d expected. The worst part was the injection of the local anaesthetic which really was quite painful! It was injected in three parts, into the skin surrounding the port. It worked very quickly and the surgical registrar (standing in for the consultant who was performing an emergency operation) began the procedure almost immediately. Initially they covered my eyes with some gauze because they said the operating lights were very bright, but this was removed, and the lights had a sort of grille over them which directed the light downwards so they did not see over-bright to me. The area was swabbed, and then covered with a blue paper sheet which was stuck to that region of my chest, with a hole where the port was. All the staff, surgeon, anaesthetist and nurses, were very friendly and reassuring, and told me exactly what was going on throughout, and asked if I felt any pain (which I did not). I could feel a certain amount of pushing and pulling, and it was interesting watching the theatre nurse passing the instruments to the surgeon as required, but I could not see what was happening because I had to keep my head turned away in order to stretch the area, and anyway I was lying back and couldn’t really see. Maintaining this position throughout did make my neck feel rather uncomfortable.
He opened up the skin along the scar from when the port was inserted so there shouldn’t be any more of a scar than I already had. He had to spend some time freeing the port; there were two stitches holding it in place, and then my body had produced a certain amount of collagen and scar tissue which was anchoring it fairly firmly, and this had to be freed. He then told me he was going to pull it out, and all I felt was some pressure and movement, and I never felt the catheter coming out from the central vein and over my collar bone – he said there are no nerves there. It was dropped into a dish and I was able to see it again after 10 months! The catheter was quite a bit shorter than when I saw it last, because it was obviously made long enough for people of all sizes, and they must have trimmed it down somewhat.
After this it was a matter of sewing me up again, and absorbable stitches were inserted under the skin. I could feel a slight vibration as the thread was pulled through the skin, but no pain. There was a final touch of some skin adhesive to finish it off – this is like superglue and will come away eventually. There is no dressing on it. It is waterproof and I can shower when I like, and I do not need to return for any stitches to be removed, or dressings changed or anything. They told me someone would phone me tomorrow to check that everything was OK, and I’ve got a number to ring if I have any concerns.
During the evening the local anaesthetic started to wear off and it was becoming quite painful, as if I’d been kicked in the chest, so I took some paracetamol and this has dealt with the pain. I shall continue to take it over the next day or two but it should heal quickly.
I was actually feeling rather attached to my port (emotionally as well as physically!) after having had it for 10 months, and I was quite accustomed to the hard little lump on my upper right chest wall, and the catheter which I could feel under the skin, running over my collar bone, and I used to fiddle with it sometimes! I feel quite bereft in a funny sort of way, now it is gone. I asked if I could keep it but they said no – health and safety and all that – they used to let people keep them in the old days but now they are worried about infection – I said they could wash it, and anyway, it had been in my own body and I wasn’t very likely to catch anything off myself! But no – rules are rules, so I had to wave goodbye to my port. They are sending it to histology to see if they could grow any cultures from it, and if they do, they’ll contact me and put me on antibiotics, but there is very little likelihood of that. Everything apparently looked absolutely fine.
I was then wheeled into the recovery ward where I was reunited with my wheelchair and given a cup of tea and a biscuit, after which the nurse took my locker key and fetched my bag of clothes for me from the changing room. After I had got dressed I went into the discharge lounge and sat with my hubby until the nurse came in with the discharge paperwork, and after this we were free to go.
This port-a-cath has been absolutely brilliant. When I was first told I was to have chemo, the oncologist said it would be injected into my hand, but I objected to this on account of the excruciating pain I always experience when they stick needles in the back of my hand, and she said I could have a PICC line instead. Later I did some online research and discovered the benefits of a port, so I requested this instead and they were happy for me to have it. It was more trouble to install, and to remove, but so much more convenient for me, especially through the summer months when I was having my treatment – being completely buried under the skin, there as nothing to show except a small bump, and I could shower and do everything as normal without having to worry about it. In addition, it required less frequent flushing than the PICC – every six weeks if it wasn’t being used, instead of every week – and while I was having my treatment this happened every three weeks anyway, before and after each infusion. I only had two six-weekly appointments at the Ricky Grant Unit to have it flushed after the end of my chemo, before it was removed.
The removal of the port really does mark the end of my cancer treatment – it’s a real red-letter day. However, in the same way that my emotions were very mixed when I was given my cancer all-clear, so they are today – of course I am glad it is no longer needed and has now been removed, but it’s the passing of an era and I feel rather sad about it in a funny sort of way! I shall feel absolutely fine about it soon, I know – just as I do now about my all-clear verdict. It’s just another milestone along the journey back to health, and I am grateful.
I would recommend a port to anyone about to undergo chemotherapy.
Any old port in a storm.
Friday 11th March 2016
The wound where my port was removed is healing well. I have not had to take any paracetamol apart from on the first day, although it remains tender to the touch. I have been able to shower and everything seems to be fine. Yesterday the hospital phoned to check that all was well, and I was able to reassure them that it was.
Here is a photo of how it looks today.
You can see there is some bruising – I do not bruise easily (I can often knock myself quite hard and I never get any sympathy because nothing shows!) – but there is some yellowing of the skin. You can also see the tiny scar further up which is where they opened me up to insert the catheter attached to the port when it was installed ten months ago. Removal of the port did not involve opening this up again – just the main scar below the site of the port.
Thursday 12th May 2016
Year-On Follow-Up Appointment with my Surgeon
Today I saw Mr. Pullan’s registrar, to see how I was getting on a year after my surgery. He was very pleased to see how well I was looking, and pleased at my report of feeling much better. He asked how I was managing the stoma and I told him that Kermit had had his first birthday and I’d made him a cake with a stoma on top! He and the nurses laughed a lot at this. I told him my hubby thought it was gross but that the cake stoma was Kermit’s cake, which he enjoyed eating, but I had to eat it first. I did not allow him to blow out his candle or he might have set the house on fire! I showed them the little stoma cake from our Allerton Three tea party that I’d brought in for Mr. Pullan, who he said was in another room and would pop in to see me before we left, which he did, and I gave him the cake, much to his amusement! He was also very pleased at my progress.
They confirmed once again that they were sure they had got all the cancer out with the surgery. They will continue to keep a good eye on me, and want me to have another CT scan at the end of the year. I told them I was seeing Dr. Lo, the oncologist, in June.
So all seems to be well! As I told them, I am feeling better now than I have felt for years. The registrar said that I was bound to be feeling better because I no longer suffered from ulcerative colitis, which would have been dragging me down. I said that even if it were possible to have a reversal, I would not do it, because life is so much better with Kermit. For the first time for many years, I am now in control of my bodily functions and it is a liberating experience. I am managing so well with it all.
I told them that I thought my small intestine had adapted well to the removal of the colon, because Kermit’s output was generally on the thick side and I seemed to be absorbing water well from my food. He agreed that this does happen. I said that a lot of the time the output was a bit too thick, and that on the forum there were plenty of suggestions for thickening runny output which seems to be the commonest problem, but not a lot about making it more runny! He asked how many times a day I was emptying the bag, and when I said that it was four times a day on average, he was pleased with that, and said that if it had been less, they might have prescribed something to keep things moving, but this was unnecessary.
They all seem very pleased with my progress.
Friday 27th May 2016
Bloods at GP’s Surgery
Following the instructions at my last oncology appointment, I made an appointment last week to go to the GP’s surgery to have bloods taken in advance of the appointment. I had to find the letter they gave me at the hospital and was terrified in case I’d lost it after all this time, but it was in my hospital folder. Nothing earth-shattering to report – just the usual taking of blood from the vein in my arm, and we were off home again.
Thursday 2nd June 2016
Appointment with Dr. Lo
This morning I had my oncology appointment. We were delighted with the look of the place – all through my treatment last year, it was a bit of a shambles with a temporary reception desk surrounded by heaps of files and papers, and a fairly long walk to the temporary waiting room – there were major works going on as they were installing a new radiotherapy machine, and we never knew where we would be for each appointment! The new arrangements are very nice, with a smart curved reception desk with two levels – one for people standing up, and a lower area for wheelchair users which was great – I commented on this and said how much I appreciated it. In the waiting room beside the desk, they had moveable armchairs and low tables, so plenty of room to park the wheelchair. I have been griping in every department I’ve been in in the hospital, that in their waiting rooms the chairs are in rows, bolted to the floor, with no spaces for wheelchairs, so everywhere I’ve been, I’ve felt in the way! You’d think hospitals of all places would think of this…
Anyway, we love the new arrangements, and didn’t have to wait long to be called. Dr. Lo was delighted to see us both again, and said how well I was looking! This is getting to be like a cracked record… but a nice one! I don’t mind how often I hear it!
She asked how I was and I said I was feeling better than I’d felt for years, which pleased her greatly. I said that I had to keep reminding myself to pace myself because the M.E. was still there, but feeling so much better, I was wanting to do everything and kept wearing myself out and having to crash out for a day on the settee!
Regarding ongoing effects of the chemo, she wrote notes as I told her that the peripheral neuropathy continued to be a problem, but my hands were quite a bit better, with just some numbness in my fingertips, and putting my hands in hot water triggering pins and needles. As for my feet, they are still bad, and I need to wear socks in bed, or the friction against the bedding wakes me up. I said that the Lhermitte’s was 95% gone now, but I still had the urinary retention.
I told her that over the past few days I’d been measuring how much urine I was producing and how much was being retained and needing to be pushed out – first thing in the morning I’ve been producing a total of around 550 ml with about 100 ml being retained, and during the day, between 200 and 300 ml with between 25 and 75 ml being retained. This averages out at a total of 370 ml with 57 ml being retained, or about 15% retention. She wrote down all this information, and said that as long as I was managing to produce the retained urine on my own, even with some effort, there was no need for me to be referred to a urologist or to self-catheterise. I said I was aware of the risk of infection, and was drinking cranberry juice every day, which she agreed was a good thing. However, she said that if the problem were to get worse, we might need to think again.
I do not think this will happen, though, because it’s all part and parcel of the same nerve damage caused by the chemo, and this will eventually heal. She said that peripheral nerves take a long time to regrow, and that it’s natural for my hands to be the first to recover because the distance from the central nervous system is less, but I could expect still to be suffering from PN for several years, with my feet being the last to recover. Because my hands have improved, I am hopeful that the bladder and feet will recover too, and I just have to be patient.
She then went on to discuss my blood results. We haven’t really talked about this before, other than for her to say that everything was OK, but I asked this time for more definite information. Regarding the cancer markers, these are proteins present in everybody’s blood, with 3.5 and below being regarded as normal, and everybody has some, but at this level it’s not a matter for concern. Anything higher and they would be anxious – higher levels could indicate the presence of a tumour, and changes in the levels would indicate that the tumour was growing, remaining static or diminishing. She said that last time, the level was 2.5, so well within the normal range, and this time it was even better, at 1.2, so I have done very well indeed, and it certainly seems to indicate that there is no longer any cancer in my body.
She said that they also tested my liver and kidney function. Last time, my liver was a bit below par, but this time it was back up to normal, and my kidneys were fine, too. I asked about my haemoglobin level because of the chronic mild anaemia from which I was suffering before my surgery, and she said that that was normal, too.
So it’s all very good news. We talked about my having a further CT scan at the end of the year, and she said she would like to see me in about 6 months, so we made an appointment for Thursday 24th November, and again, the receptionist gave me a letter to take to the GP’s surgery, and I need to make an appointment for the previous week, to have bloods taken.
TV Series About Cancer and My Thoughts for the Future
The BBC, in association with the Open University, has just started a three-part series entitled “The Big C and Me,” following several people as they undergo treatment for cancer. I watched the first episode today, having set it to record. I found it incredibly moving, and many memories of last year came flooding back. It’s so strange the things you forget – one lady was just starting her first chemo and the nurse told her that as the steroid first entered her body, she would be aware of a sensation of a prickly bottom, like sitting on a hedgehog! I had completely forgotten about this, but then remembered it so well!
The presenter of the programme is also a person who has, or has had, cancer, and in her introduction she described it as being like a large community with new members being added daily, and ended her introduction by saying, “Welcome to our world.” This is certainly how I feel about it. There is an amazing camaraderie between members of this exclusive club and nobody who is not a member can fully understand what it is like – the shock and numbness on first being diagnosed, and how the world shifts in focus, and sometimes becomes even more sharply focused; the emotional rollercoaster where one minute you feel so positive and just know everything is going to be OK, and the moments of being just plain shit scared, and the thoughts that go through your head in the dead of night… the times of feeling really low and feeling so physically horrible because of the chemo, and wondering how on earth you are going to get through this… the intense feelings of love and gratitude to your spouse and loved ones for their continuing support, love and encouragement when they themselves must be in anguish and fear, and worrying about what the future might bring… the moments of intense joy as you stand still and appreciate the small, often unobserved and beautiful things in the world all around you… the overwhelming gratitude for just being alive… and the gratitude for the professionalism of those responsible for your care. These incredible, wonderful people don’t just use their professional skill and knowledge to do all the physical things necessary to help you beat this disease, but they do it by giving of themselves, with cheerfulness, empathy, friendship, getting alongside you, and even love. I have seen nurses’ faces light up when I have entered the Ricky Grant Unit bearing cakes for my fellow-patients, and delight in my continuing recovery and healthy and happy appearance. They really do care, and words cannot describe what it feels like to be on the receiving end of that.
A couple of weeks ago, I re-read this whole cancer diary. Looking back over the past year, what came to mind was all the positive stuff, and I remembered various people saying how helpful it was that I had been completely honest and written about my negative experiences and feelings too, and I didn’t really remember about those till I re-read the diary! Memory is so selective. I am glad that we tend to remember only the good bits, but on the other hand it’s very good to read back through it all and remind myself that it wasn’t all a bed of roses, because to keep that knowledge in the forefront of my mind helps me to be more empathic towards others going through it, to show them that I do know what they are going through and how it makes you feel. Even after being given the all-clear, we are all in the CC (Cancer Club) together!
When my chemo finished, so also ended a period that was characterised by incredible highs and lows emotionally. To start with I felt a sense of loss that it was all at an end, because it had been my life for a whole year, and I was treated like royalty and given the absolute best of everything they had to offer to help me on my way to recovery, and suddenly it was all gone, and I was “ordinary” again. Someone on one of the forums I am on said, “Surely it is better to be ordinary and cancer-free than a VIP with cancer!” How right she was. That feeling didn’t actually last very long because with the advent of this new year to mark the beginning of my new life which has brought a new perspective on everything, life has become interesting and varied and fun again, as I pick up the threads of my old life. However, it’s my old life transformed – I have a new perspective on things after being confronted with my own mortality through a serious, life-threatening illness and a radical new way of managing things with a stoma. Also, because I am feeling so much better physically than I have felt for many years, I am taking up activities which I thought were lost to me forever, such as my singing and guitar playing, and I have now started to sing in public again. There are other things that I feel very much drawn to taking up again for the benefit of others, and as the year progresses, we shall see how these develop.
I have to learn to pace myself again because I am in serious danger of overdoing things! There’s so much to do and so much to enjoy, and the trouble is, my art is tending to take a back seat as other things take priority, and this is something I definitely want to factor back into my life.
I am not just cooking again, and thoroughly enjoying it, and working in my kitchen, even enjoying washing up!! – but I am also baking, which is a luxury extra which I haven’t been doing for years. I am loving it, and loving sharing it with people with cancer on the Ricky Grant Unit. I am waiting for my bus pass to arrive so that I can go out independently, and once this happens, I shall be going back there more often than I have of late. We have both been very busy and I haven’t been for a while, and I want to pick up those threads again.
Once I have been free of cancer for two years, I shall be allowed to volunteer at the Lodge, the cancer support centre at the hospital, and I am looking forward to starting a small informal drawing class, sharing my knowledge of Zentangle. I am not a certified teacher and don’t pretend to be one, but I know I can bring some joy into the lives of others through this, and hopefully a way to help those anxious about their cancer to de-stress a little.
Life is good.
Tuesday 14th June 2016
Moving On After Cancer – Session 1
Today I attended the first session in a course for people who have come through their cancer treatment and been given the all-clear. Please see the new page I have created on my blog. I shall make a new page for each session, to make them easier to navigate.
The course is taking place at the Lodge, which is the cancer support and information centre at the hospital. I am already very familiar with the place because I regularly attend the monthly relaxation sessions there.
Tuesday 21st June 2016
Moving On After Cancer – Session 2
The second session of our course. Today we had a nutritionist to speak to us about healthy eating, but she tucked in as enthusiastically as everybody else at tea time when I opened up the home baking I’d taken in to spoil everybody! It was a great session; in the second half we began to discuss emotions associated with having cancer. Please see the new page 2 on my blog for full details.
I am grateful to Andrew, the clinical psychologist who is leading the course, for giving me permission to write up the contents of each session on this blog, for the benefit of those who are not as fortunate as we are, and have no access to the kind of support that is available to us. Writing it up will also be a useful resource for me, helping me to remember the details of what we discussed.
Tuesday 28th June 2016
Moving On After Cancer – Session 3
Amazing how quickly the time passes, and we are now at the mid-point of our Moving On course. We are definitely starting to bond as a group. Again we had a visiting speaker for this session – this time someone to encourage us to be more active, and to give us pointers in this direction. This is difficult for me with my M.E. and I wasn’t sure how much I’d get out of the session, but I was able to contribute quite a bit when the subject of energy conservation came up, and the importance of pacing – I have been practising this for nearly 10 years. Again I took in home baking which we all enjoyed during the tea break. After tea, we continued to examine our cancer-related emotions, which was a very helpful discussion. Full details of the session on the new page 3 of this blog.
Tuesday 5th July 2016
Moving On After Cancer – Session 4
I am writing this on 14th October – I suddenly realised it is several months since I have updated this Cancer Diary! I’ve been so busy with other things. Anyway, at the beginning of July was the fourth, and penultimate, session of the course.
This session was on Thinking, Feeling and Doing, and Body Image and Self-Esteem, and we covered quite a lot of ground. We examined thoughts and what they were, and whether they were facts – which they are not. Also the mind-body link, and how our thoughts can influence how our body feels, and how we can influence our situation by changing the way we think about it. In the latter part of the session we looked at body image and how cancer can change this, and how we deal with it.
Full details of this session can be found on the new page 4 of this blog.
Tuesday 12th July 2016
Moving On After Cancer – Session 5
Continuing to write on 14th October.
The final session of the course, during which we evaluated what we had learnt during the entire course, and examined how we were feeling now, as opposed to our feelings at the outset of the course. Everybody agreed how much it had helped. We were encouraged to discuss our plans for the future and how we now felt about it.
We had all bonded during the course, and agreed that it would be a shame to drift apart and have no further contact. We arranged to meet up on a monthly basis in an informal way, just for coffee and chat, with no professionals involved. I agreed to arrange this.
For full details of this session, please see the new page 5 of this blog.
Relaxation at the Lodge
For several months I have been attending the monthly relaxation sessions at the Lodge, run by a retired oncology nurse. They take place at lunch time on the first Friday of the month. Several of us from that group also get together for the informal sessions so there is now contact between members of both groups, which is very nice.
I have made friends in both groups. When we get together, we all agree that we can “talk in shorthand” and instantly understand where each of us is coming from, in a way that we feel that others don’t understand. It is hard to put into words, but the emotions associated with cancer are complex, and unless you have been through it, you don’t really know. We find it hard to sort out our own emotions, and sharing with others with the same common experience really helps.
Tuesday 6th September 2016
Through the Stargate Again
Another CT scan today. Nothing very different from previous experiences – a lot of waiting around beforehand, this time in a very full waiting room with patients and their relatives. After the scan, they told me to phone the oncologist for the result in about ten days’ time.
I did so, and spoke to Dr. Lo’s secretary, only to be told that it was Mr. Pullan (the surgeon) who had ordered the scan, and not Dr. Lo, so she put me through to his secretary, who was out, so I left a message on her answering machine.
There was no answer to my request for a result, but a little while later I received a letter rom the hospital, which I assumed would be what I was waiting for, but it was an appointment to see Mr. Pullan on 13th October. I had not been expecting to see him, as I didn’t think it was necessary now everything was properly healed up and the stoma is fine, etc. – I thought I would just be seeing Dr. Lo, the oncologist, from now on, so this immediately put me into a flat spin, because I thought, “If everything was fine, they would have told me, but the fact that they have called me in must mean they found something.” I spent a day or two feeling very anxious about this – far more so than on previous occasions, which proved once again just how unpredictable one’s emotions can be over the whole cancer business.
I emailed a couple of people in my circle of cancer friends, and they instantly reassured me that there was nothing to worry about – they always did this, and anyway, if there was anything untoward, they would have called me in a lot sooner than mid-October. I was instantly reassured, and didn’t worry any more about it until the appointment was nearly upon me (more on this later).
Friday 16th September 2016
First Informal Meeting of the Cancer Group
Today was the first meeting that I arranged at the Lodge for those of us from the relaxation group and the course to meet up. I went armed with home made cakes, and we were given the room where the course, and the relaxation sessions, take place. Several people were unable to come so we were a small but select group.
We hardly talked about cancer at all, and spent most of the time roaring with laughter about things that had happened, and general silliness! I thought we were going to get chucked out for making so much noise! We all had a great time.
We will be meeting every 3rd Friday in the afternoon, as long as the room is free – I have to phone up at the beginning of that week to check, and then email around to let everyone know.
Friday 7th October 2016
Letter from the GPs’ Surgery
Today I had a letter from the surgery, which I didn’t manage to read before the surgery had closed, which was unfortunate, because it led to a whole weekend of worry.
It was a short letter saying that they had tried to contact me by phone but had been unable to do so, and would I please phone them to arrange a telephone appointment with a doctor regarding Mr. Pullan’s letter. No further information was given.
This put me back into worry mode again. What on earth was this about? What had Mr. Pullan written to them? Why hadn’t I had the result of my scan? I everything was fine, why would they want to speak to me about it? I didn’t say anything to anybody, not even my hubby because I didn’t want him to worry all weekend – I decided to tell him on the Monday once I’d had a chance to sort it out and find out what was going on, and I didn’t want to tell anyone else if I hadn’t already told him.
I spent the whole weekend thinking the worst – that the cancer had returned, and that I would have to undergo a whole lot more treatment, and even that I was going to die.
Monday 10th October 2016
Telephone Call to the GPs’ Surgery
First thing this morning I phoned the surgery. It took simply ages to get through. They make you sit in a queue listening to simply awful musack – everybody says what a nightmare it is, trying to phone. They need more people answering the phone! My hubby never phones but calls in in person instead because it saves time and aggro.
Eventually they answered, and I told them about the letter I had had. The receptionist looked it up, and said that one of the doctors had tried to phone me at the end of September, and had left a message on our answering machine and I’d never got back to them, so they wrote me that letter. I told her that we had never received the message.
The receptionist said they wanted to set up a telephone appointment with me, and would Thursday be all right? I said no, it would not. I wanted to know immediately what was going on, and also that my appointment with Mr. Pullan was on Thursday. I was not prepared to wait that long. I told her how worried I had been all weekend, wondering what could possibly have shown up on the scan that nobody was telling me about. She asked me to wait, and went to speak to one of the doctors. She returned and said that they’d said there was nothing to worry about, but it was something about some medication.
I couldn’t think what that could be about, because all I am on is Omeprazole for my reflux, which I have been taking for ages.
She said that if I wasn’t fussy which doctor I spoke to, she could fix a telephone appointment for today, and I agreed to this. She said it would be this morning, and if not, then definitely sometime later in the day.
I sat by the phone all day and nobody called me. I was pretty fed up about this.
I decided not to chase them up, and be held in a queue for hours yet again. They had initiated the whole thing and I had not asked for this appointment, and it was up to them to phone me as they had said they would.
I heard nothing at all, and went to see Mr. Pullan as arranged on Thursday.
Thursday 13th October 2016
Appointment with Mr. Pullan
Today at 12.15 p.m. I had my appointment with Mr. Pullan. It was a very strange appointment and I came away feeling quite disappointed.
After I’d been weighed, we were taken into the room and told to wait, and after five or ten minutes Mr. Pullan arrived. After shaking hands and seeming quite friendly, he sat down, and after that, he scarcely looked at me during our conversation – quite unlike his normal charming self. I found this very disconcerting. The appointment was quite short and he seemed preoccupied, and spent the whole time turning the pages of my notes and not looking at me.
I asked him straight out, at the beginning, what was the result of my scan, and he reassured me that there was no sign of any cancer. He went on to ask if I had not heard from my GP about it, and I explained what had happened, and he didn’t seem terribly impressed with that. He told me that they had found some small clots in my lungs, and he had written to my GP informing her of this, and they were supposed to be contacting me to discuss my going on aspirin to thin my blood. This was what the GP’s telephone appointment was supposed to be about.
He said it was nothing to worry about, especially as I had not had any symptoms (chest pains or breathlessness) – he said that probably a lot of people have these clots but never know about them because most people aren’t having CT scans where they would show up.
I was reassured about this, at any rate, but generally very dissatisfied by the way that this whole situation has been handled, since my CT scan. I said to him, and the nurse who was also in the room, that I have been very worried about the result of the scan, and thought that I should have been told what was going on, and I had not been told, despite 2 phone calls to the hospital, and then this abortive call from the GP. I said that I had been far more worried about this particular scan than previous ones, and that for people in my situation, our emotions can be very unpredictable. Neither of them had anything to say in reply to this.
I really do think that the hospital staff should try to remember that for them, it may be just all in a day’s work, but for us, these things take on immense importance, and that for our peace of mind, and for the alleviation of very natural anxiety, a little thoughtfulness in dropping us a line to let us know the result, whether good or bad, would really help.
Up until now, I have had very few complaints at all about the way I have been treated – quite the reverse, in fact – everyone has gone the extra mile, and has been charming and caring and delightful in every way, easing my way through what has been quite an ordeal for over a year. I am beginning to wonder if as time goes on, now that they are pretty confident that I really am cancer-free, that the regular check-ups are just something to be got through as a matter of course, and that they now have more important things to deal with… I do hope I am wrong! I have heard from a couple of people who I know, post-cancer, who are waiting for follow-up appointments or minor procedures to be carried out, and they seem to be waiting in vain – they have to chase up appointments, only to be told, “Oh, you will hear eventually… they are very busy… they are short-staffed…” etc. etc.
After we came out from the appointment, I was feeling quite depressed and not a little confused by how it had gone. My hubby was cock-a-hoop about the non-cancer result, and all for going out to celebrate, but just like after my all-clear, celebrating was the very last thing I felt like doing! When I have spoken to other people who have had cancer about this negative reaction to good news, they have all reassured me that it is very normal and not to worry too much about it. The emotions are complex, and it always takes time to process the news, whether it is good or bad. The professionals really do need to take this on board. Seemingly arbitrary postponements of operations at the last minute, non-communication of results of tests etc. can have a devastating effect on us, when we are already feeling vulnerable because we are threatened by a life-altering or possibly fatal disease. I know first-hand what this feels like.
I have another appointment to see Dr. Lo, the oncologist, on 24th November. I hope that appointment goes a bit better!
Hi Shoshi, good to see you have started! I'm happy you are on the upbeat swing, it does get a bit like a rollercoaster at times. I just keep telling myself it could have been worse. There are many, many untreatable cancers out there we could have got, so we are lucky. I saw a news article the other day that said medical research suggests that getting cancer is a 'luck of the draw' thing, and that in reality little can be done to avoid it.It is all about staying positive, I know you know that- frame of mind is everything. I'll be keeping up with you, I have really appreciated you keeping up with me. Hugs, Shaz xxxxx
What a heartfelt and honest post, Shoshi. I'll be rooting for you and keep you in my thoughts. xx
I haven't been doing too much blog hopping the past month so I hadn't read anything about your cancer. I am really sorry that this has happened. I love your positive attitude about the 'luck of the draw'. I think a lot of folks want to blame it on genetics or something but...who knows. I will keep you in my thoughts and prayers. Vickie
This post is very inspiring and heartfelt, keep it going and stay positive, you have loads of friends all around the world that care and interested in your journey. Sending positive thoughts your way.
Hugs Eliza & Yoda
Hi Shoshi, I am with you on the 'feeling detached'. Like you, I had no symptoms, still don't. None of the 'normal' things you expect with a cancer, no pain, no weight loss- in fact I'd been putting a few pounds ON here and there! I think that's partly why I'm reacting with mine the way I am- it simply does not feel real. The only time I've felt ill has been just after the radiotherapy- the treatment made me suffer somewhat, yet the problem itself isn't affecting me in any way. How weird is that? I had the contrast medium before the scan- don't know if its the same as the one you will have, but mine was an infusion into a vein. Its strange, when it starts to go in you feel warm all over, then get a slightly metallic taste in your mouth, and then finally , when it gets down to your bladder, you get the sensation of weeing yourself! You aren't, it just feels like it! Good to see that your appointments are coming through quite quickly too- I have tos ay mine have all been very rapid. Just updated my page with todays meeting with the Oncologist, and its way better than I had dare hope!. :) Fingers crossed for your scan, Hugs, Shaz xx
Sending you my prayers and a big hug to help you get thru this difficult time, Shoshi. You're on my prayer list.
Your positive attitude is admirable, Shoshi! I'm sure a lot of people will find your Boot Camp post very inspiring! Keep up the good work and best of luck with the scan on Friday. At least, you'll know what you're up against. Early detection is definitely in your favour!
Hello Shoshi. I haven't blogged for 12 weeks, and hardly turned on the computer in that time, so hadn't realised what was happening for you. John and I will be praying for you - as we are for Shaz and Doug. May our Loving Heavenly Father hold you tight in His arms. We know He is big enough for you to rant and rave whilst safe there with Him. He is a good and compassionate Father - hang in there. Trusting all goes well with your next test.
Take care. God bless you in this.
Margaret (and John) #33
Hi Shoshi. I've been out of the loop so to speak being in Holland etc so I hadn't realised what has been going on with you. Now I've come home and am catching up on my fav blogs (yours being one of them) and I see a lot has happened while I was away.
I'm so glad you are able to have a positive attitude. I think following Shaz's example of a special blog page is a good idea. Comparing it to an upcoming battle and being conscripted to fight is so fitting.
I shall be praying for you and your lovely hubby,
PS will be thinking of you later on today when you have your scan. When will you get the result?
Thanks for your visit Shoshi! I'll pop back later to find out how you got on.
Hi Shoshi, glad the scan went off ok. I had to have that awful aniseed drink when I had a CT scan pre- radiotherapy. That stuff was vile, and I LOVE aniseed! Hoping the MDT meeting goes well, and they get you an appointment to bring you up to date quickly. I've found that very helpful up here, no long wait to be given information. I've found the images are usually with the relevant surgeon within 48 hours, so depending what day/time yours hold their MDT meeting, it should not take long. My last, I had my CT scan on Friday, they had the images to discuss on the Tuesday, and I had an appointment to see him on the Thursday! Keeping everything crossed for you, Hugs, Shaz xx
Your Stargate entry was a fascinating read Shoshi and I'm so glad to hear humour in your voice! I was so hoping that you would tell us that they had found no evidence of cancer after all, but of course now you'll have to wait for the results. I can only imagine how hard the waiting is. I'm not very good with uncertainties myself. It's better to know what you're up against. I'm still hoping it's good news, though!
Got your reply on my blog, Shoshi! Even facing these adverse conditions you have the ability to make me laugh! So admirable! I know how humour can help people get through difficult situations. You've definitely got the right attitude to get through this! And you will! Hope to see you on WOYWW if you're feeling up to it.
Didn't read this until today as someone very dear to me had to have a colonoscopy and I didn't know why. Everything was ok so I was able to read this tonight.
I am including you in prayer, just as I have and still am with Shaz. Pluck up your brave, it will all come out good in the end.
Hugs, Neet xx
Sending hugs and positive energy your way. Kelly
Hi Shoshi, I was so sorry to hear about your news. What a shock it must have been. How brave you are. I can imagine there are down days but I think you should take heart from the fact you have had regular check ups and that this has been caught as a result. I am going to tell my friend about your trip through the stargaze! She recently had a scan and I think her machine was a tube shape and she was absolutely traumatised by the whole claustrophobic experience. Maybe if she ever needs another one she could ask for this kind of machine to be used.
It is a shame you have lost your mojo but I think keep crafting as once you get going I am sure it will help take you mind of things for moments. It took my mind of everything for a couple of hours a couple of weeks ago and I nearly burnt the house down! Shouldn't joke about it but I was so busy enjoying myself I forgot I put some chicken bones on to make a stock. The house stank as it was full of smoke and is only just returning to normal. Luckily it was just smoke and I can say the bottom of the pot looked like an alien that might appear out of the stargaze!!! ;-)
I will be thinking of you and am sending you a little something that may just keep you busy from time to time. I thought that even though I can teach you nothing about Zentangling I can give you something that is almost like colouring in for Tanglers! You could get all your Christmas cards done whilst you are waiting for appointments!! They are very portable so just a couple of pens and maybe some water colour pencils. Not to worry if you don't fancy it. Just a thought.
I will keep checking in to see how you are getting on. Sending Hugs and Best Wishes. Helen x
Just checking in on my favorite platypus, and saying a hello to you! Big hug!
Hello Shoshi just read through all of your Cancer Diary. (You are a talented writer! ) It is difficult to know what to say. As you said one cannot pretend - it is what it is but I pray that the outcome will be the best that it can possibly be. Also hope you don't have too much longer to wait! Waiting in this situation is the worst thing. It is hard to settle to anything else - no wonder Mr Mojo has 'done a bunk' . I am glad to read that your mum is behaving better - I know how stressful trying to care for elderly relatives is. Also glad that you have your wonderful and supportive husband by your side. Hang in there Shoshi!! Anne x Hugs.
Oh Shoshi I've not visited your blog for a while so had missed all of this. I'm so sorry you've had this finding but am so glad you had the colitis or it wouldn't have been discovered nearly as early as it has. That's a blessing at least. I'm glad you're being so positive and forward thinking about it - that will definitely help. I'm thinking if you loads & will pop in more regularly for updates. If I can help in any way you know you only have to ask.
Loads of love to you & N xxx
I'm glad your fitness appointment went well and that the doctor was kind and took the time to listen and explain. It all sounds very positive. (and you sound very positive).
And that this all coincides with mum's behavior improving can only be a bonus. You are in our prayers and also prayed for you in our women's meeting on Sunday. The Lord will sustain you. Keep your 'pecker' up as they say.
Thanks for leaving the link to your blog on my blog. The waiting game is so hard. Soon you will have news and a better idea of what you are dealing with. My thoughts and prayers are with you for the upcoming surgery and beyond. Sharon Greene
Hi Shoshi, I just heard about the cancer from Lucy. Ohmygosh, I had no idea. I'm sorry you're facing this, and hugely impressed at your positive and determined attitude. Sending love, a hug, and prayers for this to be straightforward and fully resolved by the op. Love also to your hubby xx
Thanks for your visit Shoshi! That is good news indeed - not as good as if they hadn't found cancer at all as I had hoped, but as far as cancer news go(es?), it is pretty good! You can finally relax a bit and return to some form of normality. Enjoy your weekend! Perhaps your muse will visit, who knows?
I am determined to get this comment on your blog even if my system is fighting me!! I hope you are managing to have some relax time- maybe committing to doing some zentangle each day would be beneficial. I also struggle with pain management and have found meditation to be helpful. The mindfulness based stress reduction program is a great place to start and there are guided audits at https://health.ucsd.edu/specialties/mindfulness/programs/mbsr/Pages/audio.aspx you can try. I'll write you an email with more links etc later. Take care xx
Blessings on the news this has not spread. Know that we are all with you every step of the way and sending tons of love and support. yes, it is difficult for our hubbies to grasp that anything could be wrong with us. Without realizing the facts, they often see us as a force to be reckoned with. LOL Hugs!
Hi Shoshi, that was some read! You will find some foods go on the 'can't eat' list- it all comes down to food not having as much time to be digested. I can't eat the skin on baked potatoes/tomatoes etc, salad leaves, skin on most fruit, but fruit itself is ok, advised to avoid sweetcorn/mushrooms/onions, but I've found I can eat all of them as long as I chew food well! It is surprising how fast we adapt, even to things that seem like a mountain to climb.
Love and hugs from me & Sid, ( who by the way disgraced himself in the shower yesterday, lol) Shaz xxx
Hi Shoshi, Thanks for sharing your appointment with the surgeon. At least now you know where you stand. I'm glad you've been in touch with other 'bag ladies' so that you know it can be managed very discretely and needn't be embarrassing, and is not as bad as it sounds. You are blessed with a positive outlook and a very supportive and loving husband.
Sending you love and hugs,
I'm sorry to hear the surgery is going to be more extensive than you originally thought. It's ok to feel whatever you are feeling, probably completely overwhelmed right now. I would check with the hospital's social workers for their suggestions as to some home care that can be put in place. It is major surgery and will take a lot out of you. You will be in my thoughts and prayers.
Thanks for your email updating me Shoshi. I am so sorry that this is going to be more extensive than you first thought but you seem to have adopted a very positive attitude. Keep it up girl!
A friend of ours in America has suffered for years and had operation after operation taking bits out but finally was told - the big one or nothing. So he went for it. We saw him at Christmas and he looks every bit as good as he has always done.
He wouldn't have anything to do with his bag at first, his wife dealt with it for him but gradually he has learned how to do it and now is totally self sufficient. What is so good about him is that you would never have thought that six months ago he went through this major operation.
Just think Shoshi, by summer you will be able to enjoy the lovely scenery that is around your way.
Hugds, Neet xx
Shoshi - please can I have your snail address so i can send you a card. Please.
My email address is on the RH side of my blog.
Hugs, Neet xx
Hello Shoshi . Sorry your surgery is going to be more extensive than you'd thought but also glad that there is something that can be done for you. I felt very humbled reading your post. Made me feel ashamed about some of the things I get upset about. I will be thinking about you and praying for you as always. Also for your dear husband - we are both so lucky with our husbands as mine is also the most supportive man. I guess that there are going to be lots of ups and downs and lots of emotions but you seem such a strong lady so I'm sure you will get through it all. Take care my friend.Hugs ( very gentle ones ) Anne x
I've only just read your update Shoshi! So sorry to hear that it's not as straightforward as originally thought. Sounds like you're in good hands though and you certainly have the right attitude! Your diary will help countless people get to terms with this disease, I'm sure. The detailed information you provide is invaluable to anyone caught up in a similar situation. I'll be thinking of you on the 27th! They don't waste any time, do they? Best wishes - sending you lots of love and cyber hugs xx ps.thank you for visiting my blog earlier and for leaving such lovely comments.
All set then, sounds like you're in good hands! Hopefully, the situation with your mum will resolve itself eventually. Look what I've found online, just to put a positive spin on things: http://www.itv.com/news/central/update/2014-08-06/bodybuilder-told-his-career-was-over-after-bowel-disease-sports-colostomy-bag-in-fitness-model-role/ You'll rock that bag!
Thank you for publishing the unvarnished truth of your odyssey with cancer. Especially helpful is the exploration of your feelings, hopes and doubts. The "industry" provides very little along these lines. Appreciate your references to "knowing" just by actions, words, lack of words of the medical staff. My hubby is a love but it bothers him that I can so often read the situation without the words being said.
Thank you for this lovely comment, OutOfNY - I'm afraid I couldn't find any contact details for you so I do hope you pop back and read this reply. I am so glad you are finding my Cancer Diary helpful. The "industry" as you put it, do their very best, and I think that any deficiencies can be made up between the patients themselves. There's nothing like real experience! My hubby is a real blessing and usually picks things up pretty well, although he does have a tendency to pick up things that aren't actually there, and make elaborate aerial castles with them lol! What I would have done without him through all this, I really don't know!
I am very, very blessed with a wonderful MDT to see me through this, and a hospital with an excellent reputation nationwide, coming 7th in the national league table for cancer care, amongst other accolades. Everyone has been so kind and supportive, and at every step of the way I've been kept in the loop and fully involved with decision making. I am full of praise for them all.
I've just read your 25/02/15 update, Shoshi! Please do NOT for a second feel guilty about your mum. She will be in the best of hands. Going to a home is totally in her best interest, even if she doesn't realize this. I hope your hubby will get a chance to relax for a couple of weeks, especially after your successful operation. He will probably and understandably be too nervous to relax before that. I can testify that M&S have the softest dressing gowns in the world! I can never resist touching them when walking around their stores! Will be thinking about you on Friday. xx
Hello Shoshi have commented on your WOYWW post - so pleased that you have got your mum into respite care. I agree that your DH needs to rest himself now and stop feeling guilty!! He had already done so much for your mum. He really needs to take care of himself or he won't be fit to care for you afterwards ( or your mum when she returns) I think it's great that you've treated yourself to new clothes etc. Your plan for your hair sounds brilliant :-) and love that you and DH are doing some fun things together. It must all be helping with the up and down emotions you are experiencing at this time. I will be thinking of you praying for you both. Anne x
Please, please, please tell N from us that he has no need to feel guilt. He has worked so very hard to please everyone and to care for each of you. Guilt is so very easy to come by. I know that when my dad had to go into a home I felt extremely guilty - but eventually I realised I could not do everything. The safest place for dad was in a home, and the right place for me was caring for John. N, you struck me as a really caring compassionate man when we met you. You have done so much. You are a true shepherd of your flock. Remember that God has said He will never leave you nor forsake you. His word is true. You have his promise and His presence with you as you both face the next few weeks and months. Rest as you can over the next couple of days - even with the busy schedule, and know that you can enter into the "Sabbath rest" which God has for His children.
God bless and keep you both
Margaret #11 this week.
Will be thinking of you tomorrow Shoshi. I must say your hair sounds brilliant!! Best Wishes x
That was a very moving ... But insightful read. You may not get this message until it is all over but you will know that we in blig land are all thinking of you.
The most important thing ( to me anyway) to take with you is your sense of humour....... Go girl ... You'll be fine
Shoshi... woman you cracked me up with that Red Willie term. Know that I am thinking of you lots and wish you only the best. Sending Blessings your way and to your dear hubby who needs to take care of himself. If i were able, I'd be there to see he got his rest and ate well. Know tht when they make it possible forus to do those types of things via the internet I am right here for you. Cant' wait to see pics of the new hairdo! Hugs and Blessings! Kelly
Hi Shoshi, just heard the news from Julia that your operation had to be postponed. So sorry to hear that! You were so ready to go through with it. Please don't let this dishearten you! When I took my driving test (and I realize the two can not be compared, but there's a message to my story) it was first cancelled because there were not enough examiners. Most the drivers failed that day. The second time I got a really nice examiner and I sailed through, which may not have happened the first time around, in which case I would have had to take extra lessons and wait a further three months. So the morale of my story, is that the delay may be in your favour in the long run, you never know! Just hang in there! Hopefully they will reschedule it shortly and everything will work out just fine. Let us know how it goes! xx
Oh Shoshi, dear Shoshi I could not believe this. I popped over to Julia's blog to see if there was any news and read your op had been postponed . I have only the teeniest , tiniest experience of this ( night before my minor op last year got call it was cancelled - no comparison with yours but I was so devastated) I do know that doctors etc so will be so frustrated by this ( my son is a medic) I hope you do not have long to wait for your op. Will be praying so hard for you. X Please, please do not worry re your mum. She is safe and well I'm sure. I too am going through problems re mum and my aunt( her sister) and have learned that you also have to think of yourself and your DH. We also deserve peace , care and consideration etc etc. Our needs also matter. Xxxx God Bless you and your DH. Xxx
Shoshi, I can only imagine how devastating and unexpected this delay must have been for you having gone through "passport control" and the "departure lounge" fully expecting to "get on the plane". I thought they would have called you the night before to cancel. Glad to hear you've bounced back and appear to be in better spirits now. Keep positive! Gosh, your mum sounds like hard work and high maintenance. Definitely a strong character! As an outsider, I find this kinda sweet and funny for such an old lady (she would make a great fictional character in a movie!) but I know how frustrating it must be for you in real life! Let us know when your new date has been set so we can all root for you! xx
You are an amazing woman, Soshi, married to a really wonderful man. This journey has had very rough bumps in the road and the two of you have been dealing with it all better than many could. Adding my prayers to all others. Hopefully, knowing that many people are praying with you and have you in their positive thoughts helps. Hugs from Canada.
My goodness girl to come so far and then be withdrawn from the surgery what a turmoil, it is a blessing in discuise for sure, you need some quiet time to prepare and now you have it. I so so pleased to read your mother is happy where she is, it will be a huge relief for you. Get the rest you need and I pray that all will be ready to go soon.
Yoda and I send our hugs, and love
How devastating Shoshi! I'm glad you are feeling a little bit better after yesterday's 'disaster'. And it will mean you can have a few more 'spoilies'.
It's really wonderful that your mum has settled in and likes the place. It will make things easier should she need to go again. You might want to make this a regular few-times-a-year occurrence. Just to give you and your hubby a rest. A little holiday away from each other.
We will continue to pray for you. We have also been praying for you at our Monday morning ladies meeting for several weeks now. I wish you every blessing, healing and above all the Lord's peace. You know, the 'peace that passes all understanding'.
Thinking of you
March 18 is the same day I see a Breast Cancer specialist so I will be praying for you and your surgery! It's hard to know what to say. My mom had 1/2 of her colon removed due to cancer and she did well until she developed myodysplastic (sp?) syndrome. Anyway, God bless you and I will be praying.
So sorry you had to be re-allocated, so sorry your husband may need an operation too and so sorry your mum reacted like she did about going into respite.
My heart goes out to you Shoshi, you are dealing with so much but it is wonderful to see how upbeat you are. Keep it going girl, it will soon be over and there are a lot of prayers out there for you.
Hugs, Neet xx
So good you seem so upbeat - am catching up from abroad with tediously slow connection and iPad so will be in touch properly soon when at my own pc. I think maybe you are right, the delay has been a blessing in disguise. Get plenty of r & r before the big day!Thinking of you, cindy xx
Sorry, I've been away for a while Shoshi. I started a new job two weeks ago and it's taken its toll on me. I went from not working at all to full-time work and it's been a bit of a shock to the system. I haven't even had time to read my emails and messages. I'll be thinking of you on the 18th. You have every right to feel all those emotions you're experiencing - embrace them and let them go. You have faith, which helps a lot! Best wishes xx
All the best, Shoshi. Looking forward to your post-op posts. Hugs, Annie
Shoshi, I am glad things seem to be going okay for you in hospital. Wishing you a speedy recovery. I just looked at your blog page. Everything about it is wonderful. Thank you for giving us this gift to the world. I have bookmarked it on my computer so that I can visit this page regularly. Sending you lots of hugs, positive thoughts and prayers. From Nona of The Artists Group on WEGO.
Thank you so much for taking the trouble to write about your experiences in hospital. I have been sitting with a mug of hot chocolate and reading all of it with an occasional giggle. Yes, I know nurses are poo obsessed. I am very familiar with the Bristol stool chart. Having always worked in Bristol I wasn't aware that stool chart was a national thing. I thought it was just in Bristol it was used.
I'm glad things are going OK. But I'm sorry the news is not as good as you expected. Better to have some chemo though to mop up any rogue cells. I do understand how disappointing that is.
Say hello to your hubby for me. I'm going to bed now, it is 1 am.
Hi Shoshi I am amazed at the detail you are able to recall about everything - I would be useless. I am sure that it will be a time of 'ups and downs' but you sound so positive and are dealing with it well . I am sorry that the news was not as good as you'd hope and that you have have the chemo however hope it will be the single cycle as you say .
Thanks for stopping by my blog - it was so good to hear from you. At moment I am using mobile to reply. It is 12.50 pm but cannot sleep and wanted to reply to you as soon as possible. Hang in there - I will be thinking of you both and you are always in my prayers. Very gentle hugs Anne x
Hello there, I''m so pleased you are feeling better. I just wanted to tell you about my SIL Jean. In the late 70's she was diagnosed with breast cancer and had a mastectomy and chemotherapy. two years later she was diagnosed with cancer in the other breast, and had to go through all the same thing again. Thankfully she's a very calm person and took it a all in her stride. The next thing to arrive was cervical cancer, and the removal of her womb and other all parts including ovaries took place and then chemotherapy again. again she was totally serene while the rest of us were climbing the walls with worry. she then had quite a lot of years totally clear, then about 4 years ago she was diagnosed with skin cancer, which although unpleasant was treated and kept under control. Then 2 years ago it was bowel cancer.They kept her in hospital for 10 days before they thought it was safe to operate, then they did the same procedure that you had. I phoned every day to see how she was and on the 5th day I was told she had been sent home, and she was fine (well YOU know what that means) But she's been great since and Friday is her 90th birthday ..I'm now battling skin cancer and I hope I have half her courage and belief in fate Blessings,
Thank you for sharing about Jean, Lesley - what a lot she has had to endure! One of Mum's carers has had 4 separate cancers and she has bounced back and is so feisty and I admire her tremendously. When she lost her eye through cancer, her husband left her... I hope Jean has the happiest of birthdays on Friday - she certainly deserves it! So sorry to hear you have your own cancer battle to fight.
Hey! One of the Allerton 3 here!
Just got around to reading your blog. You have the most amazing ability to recall so much detail of events-unreal! Have found it so interesting to read. It's so uncanny that we never met until we were in hospital but in the build up we were taking similar journeys unknown to either of us-a diagnosis, the scans, the awful waiting for results, the discussions of surgery, the pre op assessments etc, the emotions,the days in denial, the surrealism of it all, the positive days, the wobbly days. I was so pleased to have met you and Elizabeth in hospital you helped me through everything and we had some laughs on the way. Remember Elizabeth trying to retrieve her slipper from under the bed without bending, and looking like she was going through some ballet routine hanging on to the side of the bed-I laughed so much my stitches hurt! I shall never forget you slowly disappearing from my sight when the air bed slowly deflated-just like the Gary Linekar crisp advert! Also do you remember those lovely sexy socks we had to wear, I drew a face on the ball of my foot so when I propped my feet up on the end of the bed you were looking at this little smiley face!
Hope you continue to recover, will stay in touch
Thank you for visiting my blog and for leaving such a lovely comment, Sue!! You two really helped my stay in hospital too - laughter is definitely the best medicine even if it hurts like crazy to do it, immediately post-op lol!! When I went in, I never dreamt it could be FUN in hospital but you made it so - along with Cat and Sarah and the other nurses who came up to our end for a bit of light relief!
We'll definitely stay in touch. Let us know how you get on with your oncology appt. and treatment!
Not sure what happens when I try to come and leave a comment on your site - but it always disappears. Usually have to re-type. Getting cunning - copy and paste is now being tried...
Wow, Shoshi, what I lot I have had to read to catch up. Take care of yourselves, both of you, now your cycles of treatment have started. You obviously have a great team at the centre, and at the hospital. That's SO encouraging for you. Wishing you every blessing, and continuing to pray for you both.
Much love to you.
Hello Shoshi - I have been catching up with all your news! A lot to catch up with. Please don't think I'd forgotten you. I think of you often and you are in my prayers each evening. I have had a very busy month of May and indeed have not been at home much. Visiting my son, mum and then on to Cornwall for a much needed break and back and up to Yorkshire again to visit our son and babysit. I need to catch up with my blog at some point. Photos will be tricky as our camera has decided to ' give up'.
Your treatment sounds dreadful but as you say the alternative is far worse! It was good to read you had been crafting again and I like your cards. Also good that you got to see your friend to celebrate her 80th birthday. Well I need go try and sleep it's 1.36 am and I have an appointment in morning at the doctor's ! Only routine. Hang in there! Gentle hugs Anne x
Sorry I've not been in but I have been thinking of you. The fact that your down does not surprise me with all you're dealing with at the moment. I am happy to hear the doctors are happy with your progress so far. Hang in there, sweetie. Event he strongest person has moments where enough is enough. They will pass. Know you are loved and prayed for. Hugs! Kelly
Hi, I'm Lindsey! I have a question and would love to speak with you about your journey. Could you please email me when you have a chance? Thanks so much! :) lindseyDOTcaldwellATrecallcenterDOTcom
What kind thoughtfulness you have for taking the time to make such lovely gifts for those battling cancer and going through chemo!
Funny you talked about the Filipina nurse...I am actually from the Philippines and my husband is from the US. We met in Thailand many years ago. He is my rock.
I hope today you are feeling good. Remember take it one day at a time.
Hello Shoshi just catching up. I've managed to blog - only short posts at long last. Sorry to read that you are feeling so rough but I know it's what you expected and as you have said it will pass and will be worth it in the end. Roll on November!!!!!!! I'm not surprised your lavender bags were well received - it was a lovely thing to do. Still in my thoughts and prayers. Anne x
Hello Shoshi - I am struggling to know what to say as everything seems quite trite when I type it and I think to myself well that's not going to help! I really cannot imagine what it must be like for you and your DH at the moment - I know though that as said before it is better than the alternative. Hope as you read this you have started feeling a little better. Reading your cancer diary and Shaz's I count my blessings. I also get very cross with my elderly aunt when she complains about how hard done by she is - she is actually a very fortunate 90 year old - but also very selfish. So dear Shoshi I will continue to keep you in my prayers as always. Gentle, gentle hugs. Hang in there You Can Do It!!!!!xxx
Just catching up with your cancer diary. Everything seems to be going 'smoothly' if that's the right word to use :-) I have Fibromyalgia and often feel fatigued - not I'm sure as badly as you but people do not understand - tell you to try and get a 'good night' - no such thing for me I'm afraid. I tend to try and soldier on on when others are around. Anyway this is about you and you have so much more to contend with. Hope all goes well on Friday and the aftermath not too dreadful. Take care. Anne x
So happy to hear you are seeing a light at the end of the chemo tunnel. You sound 'wonderful' and excited. Warms my heart to hear your smile. Continued hugs and support. Kel
Wey hey, Shoshi!! Done it! Well done to the pair of you. It has been a gruelling time - but now, as you say, you can begin phase 4. Have been prying for you both right through your treatment. I will reply to your email - everything's taking a long while currently, as J ha been in and out of hospital.... but I'll get there - just be warned - it may carry a government health warning 'cos of its length (when you get it!)!!!!!
Margaret and John
Good for you, Shoshi! Here's hoping that the next part of this journey will be much smoother. You have been a trooper through it all!
Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
Toilet Chair Folding Commode Chair
I know it says “no comments” below this, but I’ve started this whole page again and edited it so the formatting is better, and in the process lost all the original comments, which I have had to copy and paste into the new page. Please add any further comments below, as normal.