A Fruitful Appointment with my Surgeon

Warning – medical details – do not read if you are squeamish about such things!

I saw Mr. Pullan, my colorectal surgeon, today, as a follow-up after my recent CT scan which confirmed my suspicion that my parastomal hernia had returned. This is one of the images from the CT scan, which I annotated – it clearly shows the hernia.

This hernia has now been repaired twice, and last time I saw Mr. Pullan, in August, he said that if I was correct and the hernia had returned, it would be more difficult to repair this time because a) it had already been repaired twice and b) there was now a Permacol biological mesh in place.

Today, having seen the scan images, he was able to enter into a more constructive discussion of options. He didn’t have the images in front of him so I showed him this one on my iPad and he was fascinated by the annotations! He found it useful as he was able to point out various things, including the considerable size of the defect through which the hernia is emerging.

He said first of all that (as I already knew), the next step in such cases was to re-site the stoma on the other side of the abdomen, because repeated repairs weaken the surrounding muscle and any further repair along the same lines would be less likely to be effective. I reminded him also of the fact that during the hernia repair operation he had made extra incisions either side of the stoma to give him more room to manoeuvre which would have further weakened the area, and he agreed with this. We also agreed that we were starting from a disadvantage from the outset, because my muscles are already very weak due to my ME.

I told him I really didn’t want to go down the moving-the-stoma route, which he understood and appreciated – I said that Kermit, my stoma, is working fine, and I am used to him being where he is, and surely moving him would just introduce another site for potential herniation, which he agreed would be the case. He said that also, there was a lot more “plumbing” involved with moving an ileostomy to the left-hand side of the abdomen – ileostomies are always on the right because this is where the junction between the small and large intestines is, so it is logical to place the stoma here when the colon is removed. Colostomies, on the other hand, are always sited on the left, and lower down, for the same reasons of anatomy. Moving the stoma would mean starting from scratch again with a brand new stoma and all its associated problems – although of course I now have quite a bit of experience under my belt (literally!) and I wouldn’t be dealing with these as a newbie, and would know how to cope with it all. I told him that since the last repair operation in March of this year when he inserted the mesh, I have had no trouble with Kermit because as I requested, Mr. Pullan made him longer so the output tends to go into the bag rather than underneath it. Previously he had been retracting flush with the skin and causing a lot of leaks and skin irritation. During this operation, Mr. Pullan inserted the mesh through the hole in the abdominal wall through which Kermit emerges, remaking him in the process, thus avoiding open surgery again, which I have already had done twice. Kermit is now a much better shape than previously, causing everything to work a lot better, and I am reluctant to disturb this state of affairs.

I asked him what were the pros and cons of simply leaving things as they were. He had told me after my first repair operation in January 2017 that smaller hernias were more likely to cause obstructions than larger ones. That operation was an emergency, following an obstruction caused by the first hernia which was quite small, and could easily become restricted. I asked him how large the hernia is now, in terms of risk of obstruction. He said it was medium-sized, so I suppose it carries medium risk of obstruction. He said that having experienced one before, I knew the signs, and would know what to do. I told him I knew that obstructions were a call for an emergency visit to A&E and that they were life-threatening, and that if there was nothing in the bag and I was throwing up, I would go straight away. He said that that was good, but it could be in a dangerous state even if I had not started vomiting, and if I noticed any change from normal, such as pain in that area, I should be on high alert and seek immediate advice.

My hubby said that if we just left it alone, it might cause another obstruction, necessitating emergency surgery again, for which I was not prepared, and in an already weakened and compromised condition, leading to a less favourable outcome as far as recovery was concerned. I said I agreed with this, but having elective surgery also carries risks – after all, my repair operation in March of this year led to a serious, life-threatening infection.

Turning to the possibility of further surgical intervention, he said this was quite a problem. It’s not just the fact that it’s been done before and there is now mesh in place, but the position of the hernia is an issue, being in the right iliac fossa, where there are quite a few structures in a relatively small space – the most difficult site for a parastomal hernia. Each time it has recurred in the same place. He examined me again, and remarked that I am quite short in the body and there isn’t a lot of space between the bottom of my rib-cage and the top of my pelvis, which makes this situation worse. I suggested six months of spinal traction to stretch me but he laughed and didn’t think that would really help!! (Might be nice to be a few inches taller, though…)

He said there were various alternative surgical approaches to repair intractable parastomal hernias, including a procedure known as the Sugarbaker technique. I told him I knew about this, having done some research prior to my last repair. It involves attaching a piece of mesh to the inside of the abdominal wall, and rather than cutting a hole in the mesh through which the end of the intestine passes in order to form the stoma, the mesh is applied over a length of bowel, forming a tunnel over it, trapping it against the inside of the abdominal wall and preventing it from moving around and emerging through any defect in the muscle. There is some risk involved in anchoring a section of bowel in this way as the loops of intestine are designed to slide over one another with the passage of food, and it can cause a blockage. He said that he had not performed this operation but the literature was positive about its outcome. When I got home I did some further research on this, and found that compared with other forms of repair (simple suturing – 100% recurrence – this is what I had for the first repair, performed as an emergency following an obstruction, performed by a general surgeon not qualified to perform a better repair at that time, and “keyhole” repair, where a hole is cut in the mesh, through which the stoma passes – a slightly better prognosis but still resulting in fairly high percentages of recurrence – this is the type of repair I had in March of this year), Sugarbaker has a much lower rate of recurrence and is more likely to remain stable. Statistics vary, of course, depending on a variety of factors, such as the length of time spent monitoring for failure post-operatively in the various trials, and differences in individual patients, such as age, weight, lifestyle etc.

Here is a diagram of mesh attached using the Sugarbaker technique.

I said I was fairly reluctant to face further surgery if it could be avoided, especially in view of how ill I was after the last operation, and he understood this. We agreed that it was a matter of weighing the risks of further surgery and doing nothing, which could result in another obstruction and the necessity for emergency surgery with all the disadvantages of that – for example, no proper physical and emotional preparation, which can adversely affect the outcome with slower recovery times etc. Also, as happened to me before, by the time they eventually did operate, I had been vomiting and not eating for several days (waiting from the Sunday morning till Tuesday evening for a CT scan!!) and was in a seriously weakened state which is not ideal for someone about to undergo major surgery.

We spoke a bit about my post-operative experience this year, being readmitted a fortnight after discharge with a severe infection. He recalled the further operation required to insert the larger and deeper of the two drains, I told him how much pain the larger drain had caused, especially when it was first moved, and then removed – about the worst pain I had ever experienced – and we talked about my brief stay in Mum’s nursing home on discharge, not just to help me convalesce, but also for my hubby’s benefit. I said that I had felt so poorly with the infection, and he agreed that I had been very seriously ill.

I said I did not relish the risk of a repetition of that, and I asked what was the cause of the abdominal haematomas that gave rise to the infection. He said that I had probably been put back on the rivaroxaban (anticoagulant) a bit too soon after surgery, and if there had been something weakened that had bled a little, under normal circumstances this would have healed up on its own, but in my case, the reduced clotting of the blood had caused more extensive internal bleeding. In such cases, the body launches a defence in the form of an invasion of macrophages to mop up the bleed, and the whole thing can get very sludgy and infected. It was a relief to know that there was a logical reason for the internal bleed and that it was not likely to happen again.

He also said that the internal bleeding itself could ultimately have led to the failure of the hernia repair. It could cause the mesh not to adhere correctly, leading to an early return of the hernia. The biological mesh would eventually be absorbed by the body without having done its job. I found this explanation for the failure of the repair quite fascinating, and it did explain a lot. Initially I was amazed and disappointed that the mesh repair had failed so rapidly, and couldn’t understand why this should have happened.

Mr. Pullan said he would like to consult a colleague at the Royal Devon and Exeter Hospital (RD&E) and run some of his thoughts past him to see if he could come up with any other ideas of how to deal with this intractable problem, and to weigh up the risks and benefits of various approaches. He would send him my scan images and full details of everything that had been done to me so far, and he may or may not want to see me himself. He is probably one of the colorectal surgeons from that hospital who came to speak to our local Ileostomy Association about parastomal hernias soon after my original operation – it seemed to be an area of particular interest to him. It would be strange if it was the same surgeon – unfortunately I can’t remember his name.

I really appreciate all the trouble Mr. Pullan is taking, and the thought he is putting into my case – I have been very impressed with this aspect of my relationship with him throughout. He is a very thoughtful and thorough man, and he is always very open with his ideas and suggestions, keeping me fully informed, and all the while listening carefully to my own views and opinions, and answering all my questions in a considerate and informative way. I always come away having learnt something interesting. I have always taken a great interest in all aspects of my various medical conditions and their treatment, and have taken a lively interest in everything done to me and for me, and I have found that everyone associated with my care has responded very well to this, and have been more than willing to explain and discuss in depth any issues of interest to me. Probably the majority of patients just go in, have stuff done to them and leave, happy to remain in blissful ignorance, but that’s not enough for me! I find the whole thing fascinating, and this attitude seems to be appreciated as most of them love their work, and enjoy talking about it. I love to hear of the latest advances etc. and how the professionals are working at the cutting edge (sometimes literally!) for our benefit. We are so blessed to have such consummate professionals to care for us in our wonderful NHS, especially when they are as charming and personable as Mr. Pullan and those others who have been involved in my treatment and care. Hats off to them all!

I came away from the appointment with answers to questions I had not even thought to ask. It was a very constructive and informative consultation and an educational experience. We now await further developments.

I was also able to have a word with the stoma nurse about the ongoing saga of the support pants. Having heard nothing further from the company for a while, I phoned the rep yesterday and left a message on her voicemail, asking for a progress report on the final pants that I am still waiting for. I have two pairs, and can just about manage with those, but I will be stuck if I have an accident – I need one on, one in the wash, and a spare in case of emergencies. She said she would email them today and ask them what was going on, and to contact me asap. She said it was very poor that I had had to wait over three months to get even the first pair. I said the trouble was, they had no competition as they are the only company that does both home visits and a bespoke service, and she said lack of competition should make no difference, and the way things had been dealt with was not good enough. She did add, though, that when they got it right, the garments were excellent, and I had to agree with her. The two pairs I have got are really good – a very good fit, beautifully made, and they do what they are supposed to do, too.

So we await further developments on that front, too.

Follow-Up Hospital Appointment

This morning I had my long-awaited follow-up appointment with the surgeon, after my operation at the end of March and subsequent major infection in April. At the time, he said he wanted to see me a fortnight after my discharge, but NHS timing being as it is, for them, two weeks = three months!

I had been having trouble with Kermit, my ileostomy, for weeks after the operation wound had healed, with many leaks and frequent bag changes. I kept hoping for an early appointment so that I could see the stoma nurse at the same time, and during this time, I was dealing with the problem myself and getting more and more frustrated with it. I suddenly remembered I’d had exactly the same problem after my original operation in 2015, and after trying various solutions, the stoma nurse had given me convex bags to try, which act by pressing on the parastomal area and making the stoma protrude more into the bag, and this solved the problem. I had been using the normal flat bags since the operation because initially, you have to let the area heal before using convex bags, and also, because Kermit Mk II was longer after being remade during my hernia repair surgery, I thought it would no longer be necessary. Anyway I decided to try, and hey presto, it worked, and the problem was solved.

I phoned the stoma team a few days ago to ask if I could see someone during the surgeon’s appointment, and was told that they were very short-staffed, with two on leave, and one with a broken wrist, but they would do their best. The HCA (complete with cast and sling) did manage to come, and she and the surgeon saw me together.

They agreed that I should have new support garments. The last ones I had were in January 2017 and they should be replaced every year as the elasticity tends to diminish, and I had also lost weight since then, so my current garments are probably not providing adequate support. The stoma nurse will arrange for a representative from the company to make an appointment with me, and she will come and see me at home.

I told the surgeon that I had a suspicion that my hernia had returned. He examined me, but couldn’t be sure, so he is booking me in for a CT scan to see what is going on. He said that if I had got a hernia again, it would be very much more difficult to repair, firstly because I have already had two repairs done, and secondly, the mesh that he inserted in March would make things a lot harder. I said that I realised this, and that I was most unwilling to have Kermit re-sited on the other side of my abdomen, which is what they often do under these circumstances. Not only would I have to get used to managing Kermit on the other side, but it would also introduce another weakness in the abdominal wall and a potential site for herniation.

Anyway, we shall have to wait and see what the scan reveals. If it has herniated again, I am going to suggest that we leave well alone, and try and manage it without further surgery, and I have a feeling he will agree. There is always a risk of it causing another obstruction, which would again involve major emergency surgery, with the added complications listed above. Meanwhile, we will try and get new support garments as soon as possible.

I told him that I was feeling better than I have felt for years, and my hubby agreed that I was much better these days. I told him I had decided to try and restore my gut microbiome by drinking kefir when I came out of hospital and was still on the strong antibiotic cocktail to combat the last of the infection. In hospital I had three different combinations of intravenous antibiotics and came home with the oral version of the last, and this was playing havoc with my gut. I knew my friend had had great success in dealing with her long-standing gut problems, by consuming kefir and other fermented foods, as well as some radical changes to her diet, excluding certain foods that were causing her problems. She came round, armed with some kefir grains and a lot of very helpful information. Since then, I have been immersing myself in this whole new world of fermentation and the diversity of the gut microbiome. My surgeon didn’t say anything in reply and he probably thinks I’m a weirdo, unless he’s kept up to date with the latest research in this area! Anyway, the proof of the pudding has been in the eating, literally, in my case! (A little aside: I do hate the way this expression has been adulterated recently – I keep hearing people on TV saying, “The proof is in the pudding.” This is nonsense!!!)

We also discussed my anticoagulant treatment. Up until my recent operation I’d been taking rivaroxaban, because some time previously, a CT scan had revealed numerous small pulmonary emboli. I was told to stop the rivaroxaban before surgery, and resume it immediately afterwards. This became a problem a few days after I was discharged, with profuse bleeding from the stoma, and I was readmitted overnight until it settled down. I remained off it during the following couple of weeks, during which time I was brewing up with the infected haematomas in my abdomen which led to the early stages of sepsis and my emergency readmission. When I was discharged, I asked about going back on the rivaroxaban and they said no, but to have the daily fragmin injections for several weeks (horrible – like bee stings!). Once these were finished, I spoke to my GP on the phone and asked again, and she said she had had a letter from my surgeon saying that I should not start again until I had seen him in the outpatient clinic. We all thought my appointment would be a lot sooner than it was, so all this time I have been without them. He said that I really should be taking them, and would inform my GP accordingly. It is a relief at last to know where I stand on this.

All in all, it was a good appointment. My surgeon is so expert and experienced, and speaks with authority but without being patronising, and is friendly and charming. He is always ready to listen to my point of view and we have fruitful discussions, and informed decisions are made. I am extremely blessed to be cared for by such a man. I always know I am in very good hands with him, and that he always acts in my best interest, and gives a lot of thought as to how to deal with the various problems I have had. I have the greatest confidence in him.

So now we wait and see what result the CT scan brings.

Second Pre-Assessment Appointment

Yesterday I had my second pre-assessment appointment at the hospital, in advance of my upcoming operation. This time I saw one of the anaesthetists, and I was able to go over a few points with him that I’d covered last week with the nurse.

The main thing I wanted to talk to him about was having a PICC line installed at the outset, to avoid the problems I had last time with all my cannulae failing, and me ending up like a pincushion. He wasn’t over-keen on the idea, and said they like to do the minimum of invasive procedures – in this case there is a small risk of embolism, but when I asked him how small, he said “less than 1 percent” which I said was certainly very small, and I’d be prepared to take that risk, for the sake of an easy life and peace of mind!

He said it was really up to the anaesthetist in charge on the day of the operation, and also my surgeon, and suggested I speak to them on the day. He then said that if I were to have it done, they would need extra time on admission for the procedure, to which I responded that if it was up to me to talk to them beforehand, it would already be too late – he took my point, and said he’d put it in the notes and speak to them about it himself. He said different people had different ideas about risk, so opinions varied.

He said that a year on, my veins may have recovered sufficiently by now for the cannulae to work anyway, and was I prepared to try. Reluctantly I said perhaps I would, but I would still prefer the PICC, to be sure. I told him that my neuropathy and bladder problems had not improved at all in the last year, but he said that not all effects of chemo recover at the same rate, and veins recovered more quickly than nerves, so there was a chance that I’d be fine.

I’ll just have to wait and see what they decide, and if they prefer me to try the regular cannula first, I’ll go along with that – I have at least made my preference clear, and it’s up to them now. If the first cannula does fail, then I shall definitely request a PICC, and I am sure that at that stage, they will agree, but that will be after the operation.

My hubby chipped in that each time a cannula failed, I was not getting the pain relief, sometimes for several hours, and this was most unsatisfactory.

We discussed post-operative pain relief and he said he could see from last week’s appointment that I was happy to have the rectus sheath catheters and PCA (morphine pump) that I’d had before – he said that often the rectus sheath catheters were less satisfactory than an epidural, but I said I wasn’t too keen on this, but added that this was probably because I’d never had one and didn’t know what to expect, and that I had found the rectus sheath catheters helpful. He said as long as I was happy with what I’d had before, they’d go ahead on that basis, although I may not be able to have them if my surgeon thought they would interfere with the mesh he will be inserting during my hernia repair, so again, we shall have to wait and see.

I told him that last time, after my emergency surgery, I was in a lot more pain initially, and he agreed that was to be expected, given that I was already very poorly and not as well as possible like the first time, which was elective surgery. We also agreed that this was why last year’s experience was generally very much worse than before, and why it took me so much longer to recover. He asked how long I’d been in recovery that time, but I couldn’t remember – the first time, I spent the whole night there, and went onto the ward the following morning.

I asked that they would insert the NG tube while I was under the anaesthetic, because last year it was done while I was conscious and it was truly a horrible experience. He said that they are not inserting them as a matter of course now, and it may not be necessary for me to have one at all – it depends how much my bowel will be handled. Again, my surgeon will decide, but in any event, it would be inserted under anaesthetic; the reason for it being done while I was conscious last year was that it is the standard treatment for an obstruction, which I knew, and once it was in, it did make me feel a lot better and prevented any further sickness.

He told me to stop the Rivaroxaban (anti-coagulant) two days before the operation, which is more or less what I thought.

On the subject of the ward staff being aware of the limitations imposed by my ME, I explained the unpleasant experience I had after my first operation, and that obviously my concerns had not been passed on. He said it was in my notes, but because these are extensive, not everybody might see that, and also that nurses tended to be very much procedure- and routine-driven and perhaps not so easy to convince of individual special needs, although the nurse last week said that she hated “blanket rules” and everybody should be treated as an individual! He said I should mention this concern to everybody, to make them all aware, in case they had not been told, or had not seen my notes. My hubby confirmed my low energy levels, and how I can suddenly run out of energy and need to rest. I told the anaesthetist that anyway, at home, I spend much of my time with my legs up on the recliner as this is a lot more comfortable for me and less tiring, and sitting in this position in a hospital bed is really no different. I told him that I do try to keep my feet and legs moving, and that I am normally moving around the house quite a lot, and only use the wheelchair when out and about, but after an operation it is a different matter.

We agreed that major surgery really takes it out of even normal, healthy people, and that allowances should be made when one is starting with an already low base-line. I am hoping that after this discussion, I will be given more leeway and won’t get bossed about – I told him that on that first occasion I was already feeling very vulnerable immediately after major surgery, and didn’t feel up to having to fight my corner, and it upset me that it was necessary for me to do so.

He asked what were the main symptoms of my ME and how they affected my life, and I told him that it was mainly very low energy levels, and rapid muscle fatigability, balance problems, disrupted sleep due to my internal clock being out of sync, and brainfog.

I said that before, as a matter of course, I had been given an airflow mattress and foot pumps, and was keen to have these again, and he agreed with this. Having the foot pumps should certainly help prevent DVTs especially if I am less able to spend time out of bed, particularly initially.

He also raised the subject of the coronary artery spasm I had in 2014 and asked if I suffered any angina attacks, to which I replied that they were extremely rare. He asked what brought them on, and I said in each case it had been stress! I told him that the main cause of the stress had now been removed (Mum, before she went into a care home, and how difficult it had been for me in the run-up to my first operation) and that as far as my heart was concerned, I was really pretty well. They are obviously aware of this, though, and will take it into account, along with the left bundle branch block which they are also aware of. I told him I’d been under considerable stress recently, with my hubby breaking his leg and Mum dying, and so much more being put onto me, but that things were very much better now. Thankfully none of this brought on an angina attack.

That more or less covered our discussion. Everything else had really been covered last week, but I did feel it was beneficial to discuss these matters with an anaesthetist as I had done at the pre-assessment before my first operation. I didn’t have one before the second operation, of course, because that was an emergency.

I told him that I was very impressed with how thorough they were, checking all these things in the days leading up to surgery, and how much things had improved in the twenty-odd years since my hysterectomy, when more or less all they asked was if I’d had any previous operations and did I have any allergies! I said the pain management was so much better as to be almost unrecognisable compared with that time, and he agreed that great progress has been made in these matters.

We are still waiting for a date.

WOYWW 439

I’m sorry to have been AWOL recently, but my ME problems have been ongoing, and I’ve been alternating between busy days when I’ve kept going, and less busy days when I’ve crashed out unable to do much of anything! No change on the desk, just stuff still out for the ongoing project, the Infusions mini-album which I wonder if I’ll even get finished this year!

A week ago we had our regular cancer Cakeathon meeting, and I managed to do some baking for that, so here are some foodie photos to keep you going. I made an apple cinnamon twist loaf from a recipe I found on Pinterest and it was a huuuuge success – definitely one to make again! It went down very well.

Here is the loaf out of the oven with its dusting of icing sugar, ready to be cut, photographed on my grandmother’s lovely old bread board, together with her antique knife with its bone handle carved into a corn cob.

When it’s cut, you can see how the twists give a marbled effect.

The filling consists of a spread of apple butter and a sprinkling of cinnamon sugar. Deeeelicious!

Here’s a small tub of the remaining apple butter. I’ve never made this before, and it’s really easy to make, and very tasty.

I found several recipes online, most of which are stuffed with sugar and/or maple syrup, but I made mine from a sugar-free recipe – the apples off our tree are so sweet that the healthy option is fine. At final count, we got about 35 lb of apples this year! I’ve got several large bags of sliced apple in the freezer to use throughout the year.

Kittens

Can you believe that our kittens are now five months old? How quickly the time passes! They are getting so big now, and Lily especially is getting quite a grown-up look, although to my eyes, Ruby still has her baby face! Long may that continue… I simply adore that kitty! A few weeks ago, Lily suddenly developed a really soft fluffy coat which is absolutely fabulous. My hubby is thrilled because he really misses Beatrice’s fluffiness which was legendary – she never grew out of kitten fur! Lily has definitely adopted my hubby, and Ruby is my baby.

We have moved the big cat tree back into the flat. They behave so badly in our sitting room that for now they are banned unless under the strictest supervision, and so they were unable to use the cat tree while it was still in there. Now, it is in constant use. They love it because they can be high up (as all cats like to be), and it’s nice and soft, and they can sleep on it. It has lots of interesting platforms and little houses on it, as well as dangly mice to play with, so it’s been a huge success.

Here’s Lily in one of the little houses.

Ruby being queen of the castle, right on top.

The two of them.

This latest one, taken today. Not much room for both of them on one platform – Lily’s leg is hanging down, and just after this, Ruby nearly fell off! (Note the curtains still tied up – a preventative measure against kittens climbing them!!)

They get really warm when they’re snuggled up together like that.

The other day I found them acting like two naughty little bookends on the flat kitchen windowsill. They’ve just got to the stage when they can jump up onto the kitchen worktops so absolutely nothing is safe from them now!

They continue to be very affectionate and relaxed and happy. They have now had their booster inoculations, and sometime during this coming month they will have to be spayed, or as my hubby calls it, “having their squeaks removed” – for little boy kitties it’s “having their pockets picked” lol!

I was hoping to get some art done this week but again I have failed. Apart from not feeling well, I’ve been very busy preparing sessions for my Bible study group which meets weekly – this is something I can do from the comfort of the recliner and in addition to all the research, it does involve a certain amount of creativity in the form of the PowerPoint slides I prepare, which I try to make artistically.

Diet

I have now reached my target weight!!!!! Yaaaayyy!!!!! I shall continue with the 5:2 in order to maintain it from now on, which shouldn’t be hard, as it’s a way of life for me now. Since I started in the summer of 2014 (stopping for most of 2015 while I was being treated for my cancer) I have lost 4 1/2 stone (63 lb) and lost 10 inches around my waist. I hardly recognise myself these days. It’s so lovely being able to wear some of my old clothes again, that I could never bear to part with, and also have an excuse to buy some new ones! If I can do this, especially as I can’t take exercise to burn off excess weight so it’s been by diet alone, then anyone can do it!

Health Update

I’ve been experiencing some pain from my parastomal hernia which the recent CT scan showed had definitely returned, so I phoned the hospital yesterday. My surgeon’s secretary couldn’t tell me exactly when my appointment would be, as appointments are dealt with by a separate department, but she thought it should definitely be in November, and if I hadn’t heard anything in a week to ten days, to phone again. She said she would pass on the fact that I was getting some pain – when I last saw my surgeon, he told me to phone his secretary if this happened, or if I had any other concerns. She told me that of course, if I developed another blockage, I must go straight to A&E – I said I knew to do this, but it was something I wanted to avoid because I wanted my own surgeon to deal with it and not have anyone else messing around with it like at the beginning of the year. I am hoping that when I see him, he will finally agree to fix it properly and insert some mesh to reinforce it. I’m not happy being in this limbo state. I’ve also got an oncology appointment in November, which should mark my 2-year all-clear – all being well, this will mean that for the next 3 years she will only need to see me once a year instead of every six months, and after that I’ll be discharged! Obviously as far as the stoma is concerned, they will continue to keep an eye on things and be available if I have any problems – all last year I was fine, and thought that was it, but then everything went pear-shaped at the beginning of this year which just goes to show you can never anticipate what might happen! Life is never dull, that’s for sure.

A couple of funnies I found this week on Pinterest:

This one sums up my current brainfogged state:

Various Updates

I missed this week’s WOYWW unfortunately, and I’d have posted this if I’d managed to join in. I had a very busy day on Wednesday with a lunch out with friends, and after that, all I felt up to was editing a backlog of kitten videos. Yesterday I felt wiped out again and brainfogged. It’s a bit demoralising at the moment – I’m really busy on certain days, and then when I get a few days free to do the things I want to do (like art), I’m feeling too exhausted to do them and all I can do is rest. You’d think after nearly 11 years of ME (Myalgic Encephalomyelitis) that I’d be used to this but there are times when it’s deeply frustrating…

First, our lunch out. Here’s a photo of my dessert!

It was called “Chocolate Trio” and consisted of a chocolate brownie, white chocolate mousse and Bailey’s crème brulee. I love how they’ve decorated the plate with swirls of melted chocolate and fresh raspberries. I started with whitebait and for the main, I had their lamb and mint pie – the whole meal was absolutely delicious. We had a great time together – we are the Allerton Three – the three friends who met in hospital (Allerton Ward) back in March 2013 when we were all in for our cancer operations. We’ve remained firm friends ever since, and try to meet up regularly, although it doesn’t always happen because we are all so busy!

I haven’t taken many photos or videos of the kittens lately – also due to busy-ness and fatigue. They are now 18 weeks old and are getting so big! Lily is still larger than Ruby, and over the last week I’ve noticed a change in her – she is growing the most fantastically soft coat! Her fur is fluffier than Ruby’s and feels like silk chiffon – very fine and just fabulous. It’s probably developing as she starts to grow her first winter coat.

Lily is also proving to be more intelligent than Ruby. She is doing really well with her clicker training, but Ruby tends to get confused, and do things I’m not actually telling her to do at that moment! They both vary as far as their attention span is concerned – if there’s anything else going on (like a fly in the room, or if they are too wild, or too sleepy) they get very easily distracted and wander off! Also, they are pretty good during training sessions, but during the rest of the day they are hopeless and seem to forget everything they’ve learnt!! Never mind, I shall keep persevering, because I know from what loads of people online are saying, this really does work, and a bit of hard work reaps great rewards. They will improve as they get older, I think, when they are less babyish and easily distracted by things to play with!

My hubby says Ruby is a happy little kitty who says “Hello sky, hello clouds…” and is very loving and affectionate. Lily is more independent but she enjoys a cuddle too.

The latest photos.

Lily in the hammock, aged 15 weeks.

Lily relaxing on the cat tree at 16 weeks. With her arms hanging down like that, she reminds me of Chloe, who was Phoebe’s sister – she always used to lie like this!

Here’s Chloe doing it.

Also at 16 weeks, here is Ruby sitting on the cat tree. Queen of the Castle.

This is what happens when I try to work on my laptop. They both want to come up for a cuddle and there isn’t a lot of room – I have to push the computer away a bit. They are 17 weeks old here.

Here they are together on the cat tree. Ruby on top, Lily below.

The final two were taken on Wednesday. Here is Lily with her head stuck in my shoe! They say cats have a much more sensitive sense of smell than we do. If I needed it, here’s the proof that I haven’t got smelly feet!

Not sure what she thought was so interesting in there!

Unfortunately, the kittens have now discovered loo paper…

Not sure who was guilty of this little feat, but we discovered it when I got home from my lunch out on Wednesday. I had put a new roll up in the morning. I have now wound it all back on! We are now making sure that there is no “tail” hanging down from the roll to tempt them. Anything that dangles is fair game, it seems.

They can now get up on the kitchen worktops so nothing’s safe up there any longer either!

This morning a friend from our monthly cancer Cakeathon meetings held one of the national coffee mornings in aid of Macmillan Cancer Support, and several of us from the group went along. I wish I’d taken a photo of her table, groaning under the weight of so much CAKE!!! I’m afraid I made a right pig of myself – cake is so irresistible! I justified it by reminding myself that it was all in a good cause! I took along a lemon drizzle cake. Her house was full of her lovely friends and we all had such a great time. She was thrilled that we’d turned up to support her. When we arrived, she’d strung bunting outside her house – supplied in the pack that she got when she signed up to host a coffee morning, and there was more bunting inside, and balloons.

As usual, no time or energy for art, but I did manage to put a few stitches in my embroidery. Here’s the latest piece I’m working on. The French knots around the design are worked in gold – unfortunately this doesn’t show up as shiny on the photo as it is in real life.

I’ve still got quite a lot of these little pieces to do before I can assemble them into the bed drapes I’m making.

I’ve also been very busy preparing sessions for my Bible study group which resumed meeting formally again this month. It takes much longer to prepare each session than it does to teach it!!

Last Sunday we were invited back to our old church to share in their harvest celebrations. I’ve done a separate post about that. It’s such a lovely little church and special because Dad’s funeral was held there.

We are going to the harvest at our new church this coming Sunday.

My poor studio has reverted to a dumping ground and is gathering dust. I really hope I can get back in there during the coming week – this is getting ridiculous!

Phoebe and Beatrice RIP

 

Beatrice and Phoebe, February 2006

We are feeling very sad at the moment. In the space of three short weeks, we have lost both our beloved kitties.

On 23rd May, Phoebe, the younger of the two, had to be put to sleep.

Phoebe, March 2004, 9 months old

She had been suffering from bowel cancer for a while, and we’d been keeping a close eye on her. She had been doing pretty well, and managing to eat, with occasional episodes of vomiting. For the final few days, however, she was not eating at all, and was very subdued and obviously not herself, and we knew that the time had come. My hubby took her on that Tuesday afternoon and brought her little body back and buried it at the top of the garden. She was a month short of 14.

She had been very well for most of her life, but after we moved here 3 years ago, she developed epilepsy and had numerous severe grand mal seizures until the vet finally managed to stabilise her, and in the past year she had only two, about 4 months apart. She took her medication readily, a few drops on her food twice a day, and she was under regular observation at the vet for liver and kidney function, and was pretty well, until she started to vomit. The vet examined her and found a mass which she determined to be a cancerous growth in her bowel.

Beatrice, our older cat, had not been enjoying good health for a long time. For many years she had suffered from various food intolerances, being sick if she ate regular cat food, so since that time she had been having Hill’s Prescription Diet food which we bought online for her – latterly the variety was changed from the one for delicate gastro-intestinal systems to one designed also to protect her bladder health. She was getting recurrent UTIs, necessitating  repeated doses of antibiotics, until the vet said that in view of her age, it wouldn’t do her any harm to be maintained permanently on a low dose antibiotic, and this certainly did the trick. The vet told us that eventually this would cease to be effective and that damage would occur to her kidneys, but in the end the treatment gave her several more years of happy and full life.

Beatrice on my hot water bottle, November 2003

She was a sensitive little soul and was easily upset by changes to her life and routine. When I first came out of hospital after my cancer surgery, she wouldn’t come near me and was obviously distressed. All we could think was that somehow I smelt different to her, with an ileostomy bag. Gradually she got used to it and was back to normal by the time I started my chemo a couple of months later, at which point she freaked out again and gave me a wide berth. At this time she began losing the fur from her hindquarters, and the vet said since there was no evidence of skin disease or allergy, this was over-grooming due to stress, and asked my hubby if anything had changed at home. He told her that his wife had just started her chemotherapy, and the vet said that this was the cause. We tried Feliway plug-ins (a cat-like synthetic pheromone which calms nervous cats) but to no avail. It was months after I finished my chemo that the fur started to grow back.

In recent weeks, Beatrice’s back legs started to get really wobbly and she would fall over, and be unable to jump up (using my poor hubby’s legs like tree trunks, climbing up onto his lap, with claws!) and the vet said she thought she had a compressed disc in her spine which was causing some nerve problems. There was some associated incontinence with this too. One Sunday morning I was due to sing in church and had left my stuff out overnight in order to have a final practice before setting out, and she had peed in my guitar case! My hubby told me she had led him to it when he first got up, as if to say, “Sorry – I had an accident!”

Both kitties being on different medications, and eating different foods, they had to be fed separately, with Beatrice being shut in the downstairs loo – and sometimes getting forgotten for several hours, poor little thing! – however, she never bore a grudge but was just happy and grateful to be released. Life was complicated as they got older and started eating little and often, and there was no way we could go away and leave them in the care of even the most sympathetic and caring neighbour (they had never been in a cattery) because you can’t expect them to hang around all day!

Just after we moved here we got both of them MOT’d by the vet, who discovered a lump on the back of Beatrice’s neck, which she said should be removed, and it might be cancerous. It was quite a major operation for her, leaving a wound several inches long, and she’d had to cut deep to remove it all, but it proved to be benign, much to our relief. The vet told my hubby to get her a T-shirt to wear, to stop her scratching it, but she was a very small cat and everything was going to be too big. Eventually he went to Mothercare and the assistant told him they often get requests like this, and she produced a babygro for a premature baby girl which fitted perfectly. It also had a little frilly skirt on it, and she looked so cute in it! She was as good as gold and never tried to pull it off. When she was getting better, she looked so funny climbing up the apple tree and onto the roof of the summerhouse, like a little tomboy in a frilly dress.

Beatrice in her frilly dress, February 2014

The two kitties were never that close. They were not related. We got Beatrice and her sister Bella in 2000, and before Bella’s second birthday she was killed on the road outside our house, and I broke my heart over that – she was the sweetest kitty and I loved her to bits. Beatrice went into mourning and sat by the cat flap for two days waiting for her to come in, which broke me up even more. Eventually she became accustomed to her absence, but it was hard. They were very close, and would snuggle up together and Bella used to wash her sister – Beatrice has always been the Alpha Cat in the family!

Beatrice and Bella, September 2000, aged about 8 weeks old – little balls of fluff

Bella and Beatrice, Autumn 2000 – two loving sisters

To keep her company after Bella’s death, we got two new kittens, Phoebe and Chloe, born in 2013. Not a success to begin with – Beatrice hated them!

Phoebe and Chloe, December 2013, about 6 months old

Eventually, after about a year, she accepted them and they all got on fine. A few years down the line, Chloe, who was the most beautiful cat we had ever had, was also killed on the road, so we were left with the two, unrelated, three years apart in age.

Chloe relaxing on the bed, August 2005 – Modesty? What’s that?

My favourite photo of Phoebe and Chloe, July 2004

When Phoebe died, we were surprised at the depth of Beatrice’s grief over her because they were not so close. She sat for days by the back door, looking out, wondering where Phoebe was. There was a place in the corner of the lawn under the little hedge, where Phoebe always liked to sleep, and Beatrice never went there, but after Phoebe’s death, she spent most of her days there, and at night, on the patch on the landing carpet that had also been a favourite sleeping place of Phoebe’s. It was almost as if she was deliberately invading Phoebe’s special places, in the hope that Phoebe would come back to claim them.

During this time Beatrice was very subdued and quite unlike her usual self. She was unsettled, refused cuddles a lot of the time, and started not eating. My hubby took her to the vet and she gave her some liquid medicine that smelt like marmite, to build her up and ease the constipation she was suffering, but she refused it, and then eventually, last weekend, refused food altogether. By Wednesday she was painfully thin and weak, and in a bad way. It was as if she had given up the will to live. My hubby took her to the vet and again brought back a little body to be buried beside Phoebe at the top of the garden. She spent her last day lying on the warm path in the sun, just as Phoebe did on her last day.

Beatrice’s last day, 14th June 2017

Since then the house has felt empty and dead. We are missing them dreadfully. We knew we would probably lose them both this year, given their age and general state of health, but had no idea they would both be gone in the space of three weeks.

My hubby has been particularly affected by the loss of Beatrice as those two were joined at the heart. When we went to collect Beatrice and Bella from the place where they were born, we went through the cottage to the French doors at the back which led to the walled garden where the kittens were outside playing, and as we crossed the room, this little fluffy grey bumble bee waddled across the floor and straight into my hubby’s arms, and into his heart, and neither of them ever looked back. All through her life, if she was sitting on my lap and he came in, she’d be straight off me and onto him! I could have been jealous, but one look at the two of them, and how could I be?

Joined at the heart, May 2010

Phoebe loved him too, and often he would sit with two kitties on him, and I would have none!

Daddy always the favourite, September 2014

Beatrice was the most intelligent cat we have ever had. She was very communicative, and always had to be at the centre of the action. If anyone came, she had to be there, centre of attention, and would engage in attention-seeking behaviour if she thought we were too involved in conversation with each other and not with her! She had the most winsome ways and even non-cat people loved Beatrice. Where we used to live, when a neighbour started feeding them when we went away, she left a note to say “little blue-collar has stolen my heart.” She had this effect on people. The vets all loved her too.

She was always into things, and the most nosey of all the kitties we have had. She was banned from my studio because she always had to rummage through everything, and pull things out, and she could be quite destructive! When she was younger and had her full set of teeth, she was always doing what we called “chewdling” – she chewed cardboard, important correspondence of my hubby’s, cables (discouraged in the strongest possible terms!) and a series of collars – even the so-called “indestructible” ones! She was a great hunter in her youth and her favourite was bunnies. We had a lot of bunnies where we used to live, in the country, and we were treated to a succession of gory half-eaten corpses with the guts hanging out and then, because she couldn’t restrain herself and would attempt to eat her weight in bunny flesh, heaps of sicked up bunny too… and she generally did it when we had visitors. (Sorry, probably TMI!)

She was also the Computer Queen of the family. She was always on one or other of our laptops.

She was very computer-literate and came up with stuff like this:

Attempting to log on, January 2011 – what was her password, I wonder?

Helping me with my Bible study group preparation, February 2011

Running programmes, April 2013

File sharing, January 2011 – she could do this before I learnt how to do it!

Adjusting my settings, May 2011

We never knew what we’d find when we came back and she’d been having a session on the computer. I would find music or videos playing, word documents full of what looked like gobbledegook to me but were probably quite sensible kitty-language stuff… My greatest fear was that she would discover my Paypal password and run up huge bills, buying expensive stuff for herself and Phoebe on Ebay…

Phoebe, by contrast, was a simple little soul and she had no interest in computers, despite Beatrice’s efforts to teach her (she also wanted to start some online computer courses for cats but I drew the line at that). We used to call Phoebe our little Devon Dumpling in her chubby years – there is a pub we go to in Torquay called the Devon Dumpling and we always call it Phoebe’s Pub!

Devon Dumpling, July 2010

Phoebe’s name means “radiant brightness” but unfortunately she didn’t live up to it. She was slow to learn the cat flap and it took her quite a long time to relate to us and build a relationship with us. She was the runt of the litter and lagged behind Chloe in everything, and was extremely timid and never spoke, all the time we had Chloe, but after that she started to blossom. Prior to moving here, if anyone visited, she would disappear upstairs, but after she got used to Mum in the house, she  realised that other people apart from my hubby and me were OK, and she became very friendly and relaxed with everyone. She also found her voice and would communicate with us quite a bit, with a sweet, high-pitched attempt at a miaow. She was adorable with her affectionate little ways, and the fact that she remained like a little child, and for most of her life, she would bury her face under my hubby’s arm, looking for milk, and would suck a finger if you offered it.

Beatrice’s name means “Blessed” and it was often used in the context of “That blessed cat!!” when she had done something particularly naughty!

We have 14 and 17 years of happy memories, respectively, of two beautiful, happy, affectionate and loving kitties who gave us endless entertainment value and joy, and for this we shall be endlessly thankful. Once the sharpness of their loss has passed, this is what we will remember.

We are now busy looking for two new baby sisters to lavish our love on. So far, no joy – we are trawling the Internet and putting out feelers to everyone we know. We are hoping for grey, or silver tabbies; we love these pretty cats who also have lovely temperaments. They will have a good life with us.

WOYWW 339

Well, I haven’t been around much lately, I know. There’s been a lot going on in my life and I’m pretty exhausted, and my creative mojo has fled again for the second time this year… My poor ARTHaven has become the dumping ground it always is when I am not using it, so I thought as a reintroduction to joining the human race again, I would show you just how awful it is, and how little creativity has been going on of late! So here’s the guided tour of Shoshi’s Dumping Ground.

First stop, under the window.

The box with the transparent lid contains the finished cards from my card factory (to which I must return asap!). You an also see my camera case, the purple box that belongs to my lovely cleaning lady – she wants me to alter it for her. Beyond that is a pile of fabric scraps and bits and pieces given to me recently by a lady from church, and under the window, my packing foam pieces that I was making into heat-set rubber stamps, and a pile of dried teabags!

Moving over to the opposite side of the room, this is supposed to be my textile zone and drawing zone, but as you can see, it’s just got stuff dumped on it.

The saddest sight is my main work area. On the desk itself is a collection of dried leaves I picked up outside the hospital a few weeks ago, thinking I would do something with them but now I can’t think what to do with them.

You can see that the dowel that supported my bags of rubber stamps has broken and collapsed. This happened two or three weeks ago and I haven’t had the energy or the enthusiasm to do anything about it. My hubby, bless him, got me a metal rod to replace the dowel, and you can see that on the desk, waiting to be installed.

Here’s a close-up of the wreckage.

How sad is that. It says it all about the state of my creative mojo at the moment!

However, to happier things. I saw the oncologist yesterday and we got the result of my recent post-chemo CT scan, and it is clear, so I have been pronounced cancer free! This is of course very good news, but I am having some problems processing it at the moment as I need a huge mental adjustment to transfer from being a patient (VIP, receiving incredible care and support, all given with kindness and even love, and feeling affirmed and very special) to being a normal person again (ordinary)! I am also wrestling with some feelings of survivor’s guilt, having met some truly amazing and wonderful people on the chemo unit whose stories are working towards an end very different from my story, and whose indomitable spirit and cheerfulness never cease to amaze me – I find myself asking myself “Why me, and not them?” Fruitless question, I know, because cancer is no respecter of persons and the whole thing is a huge lottery with no rhyme nor reason to it. I know I shall move on from this rather complex response to what I know is brilliant news for us, but at the moment I can’t match my hubby’s simple and honest and uncomplicated response of utter joy and relief! I am also wrestling with the fact that my response is a total surprise to me, as I was anticipating feeling the same uncomplicated joy as my hubby.

I have been through a lot over the whole of this year and a couple of weeks ago had an investigation under general anaesthetic which knocked me back somewhat, and I’ve been a bit low in spirits – I think it’s all a reaction to what has been a complete rollercoaster of a year emotionally and physically. I will get there in the end, but for now I need a period of readjustment to my new status as Cancer Survivor and Ordinary Person lol!

I am not feeling brilliant physically either, because I am plagued with peripheral neuropathy as a result of the chemo – this is not the transient, acute version one gets after each treatment, which diminishes towards the end of each cycle, but the persistent, chronic version which is different, and quite intense. I have also developed a couple of rare neurological effects which may or may not have developed because of my existing neurological condition (M.E.). There is no guarantee that I shall fall into the percentage of people whose post-chemo peripheral neuropathy eventually clears up, or whether I shall be part of the significant percentage for whom this is a permanent legacy. Either way, it is a small price to pay for a cancer-free life, and if it does end up being permanent, it will serve as a constant reminder, along with Kermit, my stoma, of what I have been through in order to become a cancer survivor, and I shall be glad of that, because I never want to forget, and I never want to take what I have for granted, and I always want to be reminded to count my blessings daily.

WOYWW 294

For details of how to join in, please click on the WOYWW logo in my sidebar, which will take you to our hostess Julia’s blog, where all will be revealed.

My first WOYWW of 2015! Sorry not to have been around, but despite my hopes to the contrary, 2015 has kicked off with a whole raft of problems, starting with difficulties with my very elderly mum, and there’s been a lot of stress in the house. My hubby has managed to set up a care package for her now, and we have a team of simply wonderful carers coming in each morning to help her get up, and they are such a great support to us, too. We have had the doctor and the district nurse, and at last the pressure is somewhat off, but in his own wonderful way of trying to shield me from stress, my hubby has taken on much more of the caring role, and now that Mum is more vulnerable, is finding it hard to find sufficient time away from home to enjoy his own pursuits.

As if we haven’t had quite enough going on over the past year, to cap it all, I had my regular two-yearly colonoscopy yesterday (part of the management of my ulcerative colitis) and we were presented with the devastating news that it is almost definite that I have bowel cancer. They have sent the biopsies they took during the examination for pathological analysis, and ordered a CT scan to take place in the next fortnight, and these tests will confirm by science what they know to be true by experience.

I have written a full blog post about this, giving all the details, so I won’t repeat it all again here.

I feel very, very sorry for my wonderful hubby. He could do without this extra burden – will he never be able fully to enjoy his retirement after so many years of hard work in the service of others? He has been thrown willy-nilly into a full-time carer’s role and it seems so unfair – especially after this latest news.

However, no point moaning – together we have to face this, and get through all the various things they throw at us, and I am determined to be a Good Girl and do as I am told, and take all the treatments and examinations and surgeries they deem necessary, and above all to try not to get ratty and difficult with my hubby when the going gets tough – he has enough of that from Mum!! I pray for a thankful heart at all times.

As a result of all this, my mojo has taken a bit of a bashing. Here is my desk this week.

Nothing very exciting on it, is there! You can see the alcohol ink and embossed backgrounds I made a while ago, ready to make into cards for my stash (still not made up) and a doyley and some paper napkins ready to be put away, and the rest is general detritus and my usual regular-use inks and other materials. I simply must organise a better system for the heaps of partially used pieces of kitchen paper on the left (mostly just out of shot – I wouldn’t inflict it on you!) – it’s a horrible mess that irritates me every time I work in there!

Just so you don’t feel totally deprived, I have managed to do a bit more on my embroidered pieces for the bed decorations, which I’ve already posted about, but here’s an example:

Hopefully I’ll feel like working on these a bit more this week.

I have also acquired some more RUBs (Really Useful Boxes) and have been having fun doing some reorganisation of storage in my ARTHaven. It’s a great improvement on the messy piles of workshop tools, where I’d never be able to find anything.

Not too much time or inclination to be in my ARTHaven over the past few days. Over the weekend I was going through the dreadful preparation for the colonoscopy, and I have been very busy on the computer since yesterday afternoon, contacting various people to tell them my news, and filling in my various forum friends. I am overwhelmed by the amazing and wonderful support I am already receiving from so many lovely friends around the world.

With your prayers and support, I am sure my hubby and I will beat this. Today I am in fighting mood, but am realistic enough to know that this won’t necessarily last. I have decided to clamp down on my imagination to prevent it running riot and leading me into worst-case-scenario situations – that way leads to despair, and that is NOT Shoshi’s way!!

I have been in contact with our own wonderful Shaz, and she agrees that it will help me a lot, as it has helped her on her ongoing journey, to create a diary of my experiences, not just to help others going through the same thing, but also to help keep my own thoughts in order, and keep abreast of the various events which will take place. With my M.E. brainfog, this is a very good idea because I’m quite likely to get totally confused by it all! I have therefore begun a new page (see tabs along the top of my blog) entitled “My Cancer Diary.”

Today my hubby took me out for lunch, as a special treat after my colonoscopy, planned in advance. To see where we went, have a look at this blog post from the summer, when we went with friends, and I took loads of photos – it’s such a fascinating, quirky old place, full of intriguing things, with fine old beams and crooked walls. We had a lovely meal – a real treat, especially as I haven’t been out of the house properly for several weeks, except to visit the hospital.

Have a great week, everybody, and may our mojos never die or go on holiday.