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.

The House of Marbles

Recently, a problem has arisen between Windows LiveWriter, my preferred blogging software, and Google Blogger, and I have been unable to publish any new blog posts since then. Now, thanks to the valiant efforts of a team of volunteers, Windows LiveWriter (which Microsoft is no longer supporting) has been launched in an open source format as Open LiveWriter. The team has been working hard to iron out the various glitches over the past week or so. This is my first post using the new software, and is also by way of a test to make sure everything is functioning as it should. So far, there is no facility for adding categories, but we are hoping for this to be available soon, after which I shall edit this and subsequent posts to include these.

It has been a long time since I posted to my blog. My creative mojo is still distinctly absent, and my health remains about the same – still feeling pretty fatigued and the peripheral neuropathy and other neurological symptoms from my chemo still around, but I live in hope that all this will soon be diminished.

We have had a busy couple of weeks with several meals out and meeting up with family and friends, in the run-up to Christmas. Hoping for a fresh start in the New Year, getting my life back to some sort of normality!

On Monday, my hubby thought we needed an outing, just the two of us, for a treat, so he took me to the House of Marbles at Bovey Tracey.

I do not feel as if my Christmas is complete unless I go and see their wonderfully tasteful (not!) Singing Christmas Tree:

 

The House of Marbles has a glass-blowing workshop, a shop, gallery, museum and restaurant. Plenty to see, and excellent food.

We began our visit by going to the gallery and museum. The gallery has a beautiful collection of art glass pieces which are all for sale.

I love these organic forms.

In the museum they have glass from many periods. Here is some Lalique glass, which I adore – one day I would love to own a piece of genuine Lalique!

Glass eyes!

Some beautiful lead crystal.

On the outside of the building is a series of murals. I love how the little girl in this one is peeping in at all the customers in the shop, and the other girl is pressing her nose against the glass.

In the restaurant is an animated jungle assembly, and this mural depicts that. I am very intrigued by trompe l’oeil (literally “deceiving the eye”) and have done a bit of this myself on the murals I created in our old house. Particularly intriguing in this picture is the way the edges of the bricks are painted to capture the perspective, with the tops of the lower bricks being visible, and the bottoms of the bricks at the top.

This mural depicting a hole in the wall crammed full of marbles on the left, shows that to get the proper effect of trompe l’oeil, one has to stand in one particular place to view it, because although the picture represents something in three dimensions, the drawing itself is flat. You can see that the edges of the bricks, photographed from this oblique angle, do not work, and it looks all wrong! The mural on the other side of the corner shows a real mastery of perspective with the brickwork receding towards the vanishing point somewhere in the clouds. I love how the artist has incorporated the opening times sign into the picture. Unfortunately the Christmas lights in front of this mural are obscuring it somewhat.

Mural depicting the glass blowing workshop. Great perspective again.

Finally, another fun “hole in the wall” mural showing children playing with marbles. I love the kid on the right, wearing the sweatshirt of a local school, and the pair of feet disappearing over the wall in the background!

On the roof of the building is an animated Santa who moves his arm, waving at the customers below.

We had a great lunch in the restaurant (which is part of the old pottery) and I was very unadventurous and had yet another Christmas dinner – turkey and all the trimmings followed by Christmas pudding! (About my third or fourth this year… I am not cooking a Christmas dinner this year and didn’t want to feel deprived.)

My hubby had booked a table because we knew the place would be very crowded this close to Christmas, and we were seated at a table for four. He said to the waitress that if another couple wanted to join us to avoid waiting in the queue for a free table, we would be more than happy to accommodate them, and a delightful couple came to join us and we chatted together throughout the meal. They ended up by giving us their address and contact details and inviting us around to their house on the evening of Christmas day!

When they left and my hubby went to pay the bill, another family came to occupy our place. They were an older couple with their daughter and her baby. The man was a wheelchair user and we got talking about our disabilities and wheelchairs, and I told him I’d had quite a year of it with bowel cancer, and now had a stoma, and he said, “I’ve got one too!” so we ended up talking about that, too! They were a delightful family.

I am always amazed at how many great people one can end up meeting while out and about. Having flowers and decorated spoke guards on my wheelchair has brought so many people over to me, full of smiles and nice comments, and it’s made my day, and theirs. Without decorations on my wheelchair I am overlooked and feel quite invisible.

On the way home we called in on some friends at their business, where they and all their staff and some other friends had gathered to sing carols and eat mince pies! After this we called on some friends at home where we had another cup of tea and enjoyed their company (and that of their relatively new kitty who I had not met before) before returning home. It was such a lovely day out.

Yesterday we had another outing when my hubby took me to Sainsbury’s! It may not sound very exciting to most people (grocery shopping just before Christmas isn’t most people’s idea of fun!) but I can’t remember the last time I went in a supermarket – I always do my shopping online, and for most of this year my hubby has been going out shopping for me. As usual just before Christmas, all Tesco’s delivery slots had been taken so we had to go out to do the shopping. It wasn’t nearly as crowded as I’d expected, and I really enjoyed the experience. As well as the normal weekly shop, we stocked up on a few party bites and treats to have as our Christmas dinner. The only thing that blighted the outing was the fact that it was pouring with rain…

All being well, from now on I should be a bit more active in Blogland, and hopefully I will soon be back in the studio with all my creative juices flowing again.

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.

Completion of Florabunda Alphabet

Last night I finally completed the Florabunda alphabet I’ve been working on, with the letters K to Z, so I can now make personalised cards for all my friends, even those whose names begin with X lol!

Here is the complete set.

Health Update

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 12.20 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.

I am also hoping to be able to start spending some quality time in the studio doing art and being creative! Initially a lot of my energy will be taken up just getting things straight in the house again, but once this settles down and I’m properly into a routine, I am looking forward to spending time up there, probably mostly in the mornings, depending on how my energy levels pick up.

Some More Florabunda Alphabet Letters

Yesterday I drew some more Florabunda alphabet letters, and have now done F to J. I noticed that the first few looked a bit sparse compared with later ones, so I added some more flowers to the backgrounds and re-scanned them, so they are now more of a piece.

Only 16 more to do and the alphabet will be complete! Here’s how it looks so far.

These will be nice to use on personalised cards, and now that they are scanned in, I can make them whatever size I want. I can also colour them if I want, but so far I quite like them in black and white.

Yesterday I made a leaflet which I want to show to the organisers of the cancer information centre at the hospital when I next visit. I am hoping they will allow me to run an informal group of say half a dozen people, so that I can teach them the basics of the Zentangle method of drawing. I do not profess to be a teacher and am not a Certified Zentangle Teacher (CZT) but in a small way, I think I could share what I know, and get people started on what is a most relaxing and fulfilling activity, which is very de-stressing, and could really help people to deal with their cancer/chemo a little better. I do hope they will agree to let me do this!

If they give me the go-ahead, I can adapt this leaflet and make it into a poster, with their contact number and details on it.

Health Update

I am now well into my second week of my final chemo cycle, and have been feeling pretty terrible for the past two or three days. This happened last time too, on the reduced dose – I thought I was getting away with it because I felt so good in week 1 compared with other cycles, and then it hit me big time in week 2! This time, it’s worse, and I’ve had symptoms I haven’t had since earlier on in my treatment – I felt a bit nauseous this morning but fortunately that passed before lunch because I took my pre-lunch anti-sickness meds. Also, the peripheral neuropathy was quite troublesome this morning, and again my hands seemed to seize up, but these symptoms are transitory, thank goodness. I suppose that I should expect this, because even with the reduced dose, the effects are cumulative. I’ve felt extremely wiped out again, not helped by the fact that for the past few nights I have slept very badly, and I had a sleep this afternoon. I’ve felt very weak and wobbly, and my balance is much worse than usual so I am having to be careful moving around the house. I am using my trolley rather than my crutches and that does help.

I know that this will pass, and that by the end of this week I should be feeling a lot better again! Knowing that feeling better is no longer a prelude to being cast down to the bottom again by another treatment is having a huge psychological benefit, and I can put up with anything in the knowledge that this is temporary, and that I am now at the beginning of the road back to being my “normal” self again!

A Brief Visit to Babbacombe

After my final chemo yesterday, I wasn’t feeling at all bad today, and well up to a short outing this afternoon. We had arranged to take our neighbour out for a little run as she needs a lot of cheering up at the moment, so we went back to Babbacombe sea front and had a wander up and down looking at the sea, and then we went for a coffee. Again, I used my new small buggy and it was a doddle trundling about, and it is small enough to go in the cafe too. All very satisfactory – so lovely to be able to get it in the car, so we can go further afield and we have a real sense of freedom.

I love the sea in all its moods. Whenever we visit, it never looks the same. Today, being a slightly cloudy day, the sea was an azure grey. I hope I have managed to capture the subtle colours – I had to do a bit of editing in my photo editing software (Serif PhotoPlus) to get back a little of the blueness and I think I got it as I remember it. I am getting a bit more confident using the camera on my phone now, and had little difficulty in transferring the photos to the laptop this evening – after all the hassle I had yesterday!!

In the first picture, you can see that there has been further landslip from the cliff that collapsed so disastrously a couple of years ago in the winter storms, taking a house with it. There is some fresh red sandstone colouring the slide which my hubby pointed out to us.

The azure sea!

Looking back to the buildings on the sea front, I saw the moon through a gap in the clouds. Despite my best efforts, I cannot get back the outline of the moon – only the brightness through the clouds! It’s quite impressive, though!

A more regular view of the little statue of Countess Mount Temple than the previous picture I took, in silhouette from the slope which goes down to the left of the statue. She was a local Victorian philanthropist. Every day someone puts a fresh flower in her hand.

After our stroll along the sea front, we went for a drink in the Cliff Railway Cafe. You can see the sea view through the window. We didn’t go down the funicular railway this time as it wasn’t very bright weather and we needed to rest a bit. (Of course, as we got back to the car park, the sun came out! Typical…)

I had to take a photo of our three beverages because they looked so pretty and the china was such fun! Our neighbour had tea (not yet poured); my hubby had a latte with a very pretty design on the top, and I had a cappuccino.

It was only a short outing today. On the way back, my hubby took our neighbour into Sainsbury’s to help her do her shopping, and I sat in the car and did a bit in my puzzle book and then dozed off for 10 or 15 minutes. Compared with how I would usually be on the first day after a treatment on the full dose, when I would be pole-axed on the recliner incapable of anything, I did remarkably well today and haven’t had to have a long sleep! The peripheral neuropathy has been a bit troublesome so I’ve had the gloves back on, but apart from that I’m remarkably well. Last time, on the reduced dose, I did pretty well in week 1 of the cycle, but crashed in week 2 – if this happens again I shan’t mind because I know it’s only temporary, and this time there is no further treatment to follow, so I shall simply continue to get better as the effects of the chemo gradually diminish from my system. Roll on the day! I count my blessings every day and am so thankful that I am doing so well – my recovery is now well in sight, and everyone at the hospital is very pleased with me, and are sure that the cancer is all gone.

I Have Finished my Chemo!

The second of two posts for today. Please scroll down to see my latest Florabunda card collection – worth seeing as the Perfect Pearls are just gorgeous!

I have posted an edited entry from my Cancer Diary page into the main blog because it is such an important event, and I know that not everybody visits the Cancer Diary. Edit: I have been experiencing problems with Blogger (again…) and am unable to post from Blogger’s editor so my latest Cancer Diary page has not yet been updated. Unfortunately I cannot post to any page except the Home Page on my blog from Windows Live Writer, which is my preferred blog editor. Further edit: I have now discovered that this is a problem with Firefox. I can successfully publish posts to my Cancer Diary page if I use Chrome – not my preferred browser, so I am hoping Firefox will resolve this issue in double quick time!

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... Recently I got really fed up with feeling ill all the time, and wondered if I'd ever get through it but the time has simply raced away, and suddenly I was facing the final session.

I had to wait for nearly an hour before being seen, but in the end this was a blessing in disguise (more later). I was taken in and prepared for the chemo as usual, and then went 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! The nurse who had been looking after me today, came and did all the necessaries to finish my treatment, 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.

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 "hospitally." 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. You can see the drip trolleys on the left, which are used for the treatments.

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.

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 behing her, unbeknownst to her, and raising two fingers above her head, which you can just see if you look very carefully! Lol!

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, and while I simply love to give things away, and would be happy to continue to do this, it occurred to me that if I charged a token amount for each item, the gift would be a double wammy, because the recipient would have something nice to treasure without breaking the bank, and the unit would benefit from more much needed funds, so that they can continue to give others the excellent care that I have received. 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.

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 expell 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, the "Daily Blessing" in my side bar has come up with this:

Friday October 16, 2015

Today's Verse:

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.

Philippians 3:13,14 / KJV

How appropriate.

WOYWW 332

What’s on my workdesk this Wednesday? A card factory!

Scroll down to see previous posts, and the cards I’ve been making recently. I do not really want to get typecast as a card maker as I would prefer to be doing other things, but needs must, and I thought if I can get a nice lot made, it will save time in the long run, if I have a good stash to draw on when necessary. Most of the cards are blank inside, and generic – and ready to be personalised and given the appropriate sentiment when I use them – something that will not take long to do.

I thought you might like a slightly different view of my desk this week, taken from the other side of the room.

Working from left to right, in the orange carrier bag are some boxes with my Florabunda drawings in them, and the prints my friend Lucy made for me, so that I could do some colouring. My pens and coloured pencils are in there too, and I’ve been carrying this up and down stairs over the past few days. Next to that is a cardboard box with kitchen paper in it, that I am using to soak up various different colours of inks and paints etc. When they are nicely coloured all over, they get used in projects. The plastic filing tray on top of this has scrap paper in it. In front of the iMac is my old laptop, on top of which is the brown cardboard box with completed cards in it, and top of that, the open box contains work in progress for the card factory.

Moving on round to the main work area there’s a pile of scrap card and paper, with my gorgeous little green pincushion that Lunch Lady Jan made for me a few years ago, and the little rack with double sided tape, masking tape, etc. on it. Next to that is a piece of kitchen paper maturing nicely with greens and browns and yellows. Then my tin with brushes in it, and my hot glue gun. In front of these is my envelope punch board – in the process of being used to make envelopes for the card factory – some larger ones to fit the square blue cards you can just see, and on the punch board itself, an envelope for the 3 x 3 in cards you can see to the left of the punch board. On the right, in front of the square blue cards, is one of the remaining cards from a card factory I had going a couple of years ago – I found this the other day, together with the 3 x 3 in cards.

Then my heat gun, Cuttlebug, talc (useful for making mixed media pages less sticky so they don’t stick together, and various other uses too), and kitchen roll. The white thing sticking out is the corner of the box I keep my ribbons in. You can also see another piece of inky kitchen paper coming on nicely! The usual stuff on the shelves above. You can see all my rubber stamps in plastic bags hanging from the rail, and my distress stains on the shelves.

I think that about covers it.

Health Update

I am now only a couple of days away from my final chemo on Friday. I have to go in tomorrow to the chemo unit to have bloods taken, followed by my usual appointment with the oncologist the day before my treatment. I will be able to report to her that the reduced dose last time has certainly alleviated the peripheral neuropathy, which although still present, has been very much less severe – this was the object of reducing the dose, because if left unchecked, this unpleasant side effect can become permanent and we certainly don’t want that. However, despite feeling better in week 1, in week 2 I crashed a bit and felt very exhausted and not too well (last week). This week, though, I am feeling a lot better, and have managed to achieve quite a bit in the studio with my card factory, and am able to enjoy what has turned into a very busy week this week, with visits from friends and family, and a family birthday supper last night.

After Friday I shall have to get through the usual recovery period, but at least as I climb that final ladder, it will be with the knowledge that it will not be followed by the usual long and very slippery snake! It will be soooo good to be able to concentrate on getting well again (as well as is normal for me with my M.E., that is) and to know that with the passage of time, the effects of the chemo will diminish as the toxins are flushed from my system.

I have been looking at diet, and making plans about when I am well enough to take over the kitchen again after my hubby has been looking after me for so long. He has done very, very well and I appreciate everything he has done, but the time has come to abandon the ready meals and to start concentrating on a healthier diet for both of us, and the introduction of lots of colourful fruit and veg full of antioxidants to help flush the chemo out of my system! The veges that might cause me problems because they have potential to block the stoma (leafy veges like kale and spinach) I will still be able to eat, once I start making green smoothies with my high speed blender.

I am not planning on rushing into anything, and there are bound to be days when I do not feel well enough to cook, and for a while I expect we will share kitchen duties, but gradually I shall take over the bulk of it, and start doing the grocery shopping again (which should save us quite a bit of money too lol!!).

What I am really looking forward to is having more energy so that I can spend more quality time being creative. I have so many plans. I have decided that if I can put in even one hour (preferably two!) per day, I will be amazed at how much I can achieve – I have already proved that during the past six months of my chemo – looking back over my blog I’m amazed that I’ve managed to achieve anything at all, and actually I’ve done quite a bit!

Happy WOYWW everybody, and may you all have a fulfilling and creative week.

Florabunda Book

Even though the oncologist reduced my chemo dose by 50 percent on Friday, I am still feeling extremely wiped out and exhausted. However, the peripheral neuropathy is much reduced, which is a good sign, and this was the main reason for the dose reduction. My appetite has been poor these past couple of days and I’ve just got to do my usual, and go with the flow, rest as much as possible, sleep when I need to, and try to keep as positive as possible, always remembering that I now have only one treatment to go.

Recently I commented on Neil’s blog and amazingly, I won the book he was reviewing, of which he had a couple of copies to give away. For someone who never wins anything this was a big surprise! The book arrived today.

It is written by Suzanne McNeill of Design Originals, a prolific Zentangle artist and CZT (Certified Zentangle Teacher) in the USA. Her videos are a delight – this lady is so full of joy and inspiration! This latest book is a sort of offshoot of Zentangle, being a form of floral doodling. There is loads of potential for design with this – in the same way as Zentangle, you build up the designs one stroke at a time, from simple elements. She shows how to get different effects with different types of pens and colouring, with lots of inspiration for creating different projects

Neil popped in this adorable little tangled card he made for me with my initial on it, and with some kind words inside.

Here are a few sample pages from the book. I am sure you will agree that it is beautifully produced, and high quality.

It contains pages that you can colour in yourself, and plenty of blank spaces for developing your own practice drawings.

I love the lettering section towards the end. Lots of inspiration here!

I hope this sample has encouraged you to look further at this.

I am just starting another card factory to replenish my stash, and this time I am intending making lots of relatively simple cards that I can produce fairly quickly, while my energy levels are so low. This book has come at an ideal time – I can do some simple floral doodles on small squares of card while resting on the recliner, and make them up into cards in my studio during those short periods when I feel up to sitting up at my work station.

Watch this space!

Thank you so much, Neil, for making this offer of the book to give away. I am highly delighted to have won it, and it made my day receiving it today when I am feeling rather poorly.