Peter’s Hospital Diary

Just noticed that it is five days since I last posted and although I would like to be able claim that it is because I have been too busy responding to my fan mail that would be untrue! That said, I did have a couple of cards from people who had seen Friday’s episode (and no - they hadn’t been alerted!)

So what have I been up to this bank holiday? I have finished laying the thermal insulating tiles in the conservatory, the next stage is to lay the heating cables and get the tiles laid - I’m not going to do the tiles myself. Sunday was a lovely sunny day here - the first for a while, so the garden was attacked, and I started my “get fit again” regime by pushing the mower up and down the lawn. Although tiring, it was something I couldn’t have done 4 weeks ago. Monday was spent chilling out (recovering!)

And I suppose that is the overiding theme - apart from the boost given by Thursday’s news, I am beginning to feel stonger. My skin isn’t as dry as it was, and the cracks on my feet are beginning to heal, so I can start exercising a little more.

The next job to do before the next check up on Thursday week is to sort out all the unused medicines that I have lying around the place and take them back to the hospital pharmacy. It will make a change taking something back!

Onwards and Upwards!

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Yesterday’s blog entry attracted record numbers of comments and almost record number of ‘hits’ on the pagees - thank you!

Well I had my 5 minutes of fame this morning although I didn’t see the programme live (I was out talking to the work medics about my future employment - looking good!) but I did watch it when I got home.

It seemed very odd watching 6 months of one’s life condensed into 10 minutes or so. There was so much I had forgotten but seeing it again really brought home the trials and tribulations of the last few months. Rachel and her team at City Hospital did a fantastic job of picking out the essence of it, and thinking about it for the final moments of the film reminded me just what an amazing thing a transplant is.

There is still a little way to go yet - I’m still on the fortnightly check ups in the transplant clinic for the time being, with another PET scan in two or three months time, and then at some stage I hope I will be back to the three monthly checks.

Providing all continues to go well, I may be going back to work in August, which will give a chance to start getting physically fit again and pass recreational diving medical so that I can go on the trip to Cyprus, and start getting back to normal. I also have some work to do for Leukaemia Care including some training material and an article for their magazine “Focus” as a follow up to one I wrote last Autumn. There is a PDF version of that edition in the “About… LeukaemiaCare” page.

This is not the end of the blog of course, as it isn’t the end of the journey, so I will be writing it for a while yet!

Once again - thank you all for your support!

Onwards and Upwards!

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Good news! The scan showed that while there is still a little bit of activity, the amount is much less than the last scan, showing that the incoming immune system is continuing to fight the good fight!

Although I did have a warm feeling about the result, I’m sure that you can imagine how enormously relieved I feel to get confirmation! I saw the pictures and there is just a small dot adjacent to my spine, where previously there had been a realatively large mass leading up alongside - absolutely tremendous!

So what now? Well, I will probably have another PET scan in a few months time, and I still have the residual GvHd (a small price to pay) but at last I feel I can really start thinking about the future. Although I have been making some plans (the diving in October for example) I now feel that they are a distinct robability, rather than a hopeful possibility, and I may be able to return to work in August. This has important consequences for the actual job that is being held open for, as it is likely that could have fallen through if the scan result had not been as good. So at last I feel that I might be getting my life back. I only wish my anonymous donor could share in it!

Meanwhile back in the clinic I saw my fellow patient Mark, who you will recall had his transplant at about the same time as me. He was looking well, but his transplant has not been quite so successful so he may have to have another in September. Mark, we all on your side - hang on in there and enjoy the holiday you have planned.

City Hospital were on hand to film the news - that film is being edited this afternoon to form the final bit of the ‘feature’ which will be shown tomorrow morning.

It has been a long journey (7 years and 3 transplants since diagnosis) but there really is the prospect that the lymphoma might be beaten. I don’t want to count chickens before they have hatched - mantle cell lymphoma is notoriously difficult to erradicate - but…

Onwards and Upwards!

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A brief post today as I have to continue laying the thermal insulating boards in the conservatory in preparation for the underfloor heating and the final tiling!

I did start it yesterday, but I underestimated the amount of tile adhesive I would need (expensive stuff too - almost as much as the tiles it is sticking down) and I must remember to wear gloves today as the adhesive is cement based and alkaline - which dosn’t do the already sensitive skin on my hands any good at all! It was surprisingly tiring too - I must remember that I am not (yet) as strong as I was!

All this is useful mind distraction for the big event of my week, which is of course getting the PET scan results fom my consultant tomorrow! I will post the results tomorrow evening so that any of you with crossed appendages (especially Richard!) can (I hope) uncross them!

I will also be doing the final taped interview for City Hospital, for the ‘featurette’ about my transplant. That should be transmitted on Friday morning.

I’m not sure if the weather is supposed to be “Sunny with occasional showers” or “Wet with occasional sunny spells” - I think the catch-all of “changeable” just about sums it up! Oh well, at least I shall be working indoors!

Until tomorrow then… O&U!

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Not a lot to report really although it was good to see the team from the PET centre again. The scan itself was much like all the others (with two notable differences) but the ‘exciting’ bit will be the results next Thursday. However I have a warm feeling about that!

But I said that there were differences in the procedure! One was that I was filmed by City Hospital for more footage for the ‘feature’ they have been doing over the last few months. This should be screened next Friday - the last in the current series. I went up to the City Hospital offices during my visit, where apart from seeing Rachel, I bumped into (name dropping here) Nadia Sawalha who is presenting the current series and who interviewed me a couple of years ago.

The second difference was that the PET centre seems to have had a new delivery of up-to-the-minute, latest chic, catwalk-hot hospital gowns. You may know the sort I mean - the shapeless ones that are oversize with lots of tie tapes that tie at the back (usually missing) and stamped “For hospital use only” (to prevent the removal of these high fashion items by patients!) Anyway - these were new, had all the ties, so I could walk down the coridoors and be filmed with some semblance of modesty - although after three transplants, there isn’t much modesty left!

Other than that it was an uneventful day, although it was pretty cold up in London - but then come to think of it, it isn’t that much better at home - where it is raining too!

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Whew - busy week, so sorry I haven’t posted here for a few days.

It all started on Monday when Felicity had a call to go to her parents, which she did that day, leaving me as nominal Commander-in-Chief - Home Command responsible for middle and youngest daughter! Not too much of a problem for Monday, I just convened the ironing board to ensure that school clothes were ready, and brushed up on the cooking skills for that night’s dinner.

Felicity returned home on Tuesday to find that the house hadn’t burnt down and the children hadn’t suffered food poisoning! That evening was spent at the regional final of the “Young Business Enterprise” scheme where youngest daugher was in the qulifying school team. They gave a very creditable performance, and won an award, although they didn’t get selected to go through to the next stage.

All seemed quiet on Wenesday until middle daughter discovered that her phone, purse and key ring had been stolen from work. No money, but her purse contained her driving licence with address, and the key ring had her car keys and a house key on it, so she will have to have the locks on her car changed, while I try and find a replacement front door lock, which looks as if it will be just under £100! Ouch! But until it is done we can’t really leave the house unoccupied!

However on the health side, although my skin is still dry and flaky, my hands have pretty much healed up, and my feet are less painful! I am still getting a little swelling on one ankle, which is a it worrying, but otherwise I feel fine! If there is anything seriously amiss, I’m sure the PET scan tomorrow will find it!

Onwards and upwards (or at least - out to the locksmiths!) Just a final thought - does all this ironing mean that I don’t need to take iron tablets…

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And what an miserable Monday it is too - cold and overcast!

However I am feeling much better again today. Although I wasn’t feeling so good on Saturday, it is amazing what a good sleep will do and I had a very long and self indulgent sleep-in on Sunday morning, giving me over 10 hours of (much needed beauty) sleep!

The rest of the day was spent more or less relaxing - apart from a little more ironing - which seems to have become a new hobby!! So thank you to Richard who suggested this (in the comments for Saturday’s post) as a way of combining it with another hobby! Somehow it seems counter-intuitive!

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I had meant to write this up yesterday, but it has been such lovely weather that I have been away from the computer - and I was out for a lot of the day!

In fact it has been a busy couple of days. After I got back from Wednesday’s consultation with Linny, and the good news about the radiotherapy and the PET scan appointment, I did get down to the dive club. Frustratingly, I was helping provide some poolside cover for a training session - it was sooo tempting to grab some kit and get in the water! However I resisted the temptation - apart from the fact that I am probably not quite strong/fit enough yet - I don’t suppose the prolonged immersion would have done my skin any good!

Thursday was a lovely sunny day - time for some pottering in the garden, although I avoided digging the trenches for the runner beans! (They were done later by someone else) My feet were quite sore, not helped by the walking in London, and walking round the damp poolside in bare feet the night before. However I did get some plants potted out in tubs, and continued the fitness regime with a few domestic chores - like the ironing! I also did a bit of tweaking of the server software (this site is self hosted) for the web and blog pages with Mark’s (fellow blogmaster) help!

Another lovely day yesterday too - so it seemed silly not to nip put to the pub for lunch - again! This could become a pleasant habit although purely in the interest of research to check that my sense of taste is returning!

Alas, no pleasure without the payback! My skin is really itchy today. I’m not sure if it was because I was in the sun yesterday (not the pub - that was The Rising Sun!!) or just that I have overdone it a bit in the last couple of days. However I have slapped on some steroid creams which has eased it a bit. The good news (always a silver lining!) is that my hands are a lot less sore, and the cracked skin on my feet seems to have started healing!

Weatherwise we have sunny spells at the moment - and as we are in the middle of one, I had better go and see how the garden is getting on! Onwards and upwards!

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Check up day again - well, a day earlier than normal as Linny is off to a conference tomorrow, so the clinic was held a day early in the day unit at Guy’s. It was good going back there, although one of the nurses (Rachel) remarked that she didn’t recognise me for a moment as she has never seen me with hair!

The consultation with Linny was pretty short - we didn’t even wait for the blood results! She started (like everyone else I saw today) by remarking how well I looked, before getting down to the nitty gritty. The radiotherapy has been postponed until after the PET scan (which is scheduled for 19th May) so George (the radiologist) can put away his ray gun! I also broached the subject of going back to work. This did cause a bit of sucking of teeth, with the end result that it was “too soon to say”, and that “it depended on the PET scan results”, but August wasn’t ruled out. For once I didn’t end up with a small pharmacy in a bag (although I didn’t escape scot free - I needed some Piriton, but as it is an over-the-counter medicine, I don’t count it!)

After the check up, I went off to St Thomas’s for the simulator session. I was a bit early so I called in to see my friends at “City Hospital”. They would like to film me having the PET scan, and are trying to schedule me into a live slot before the series ends at the end of May. Watch this space. (Good cup of tea too, thank you Nicky and Rachel!)

That filled in the time until the radiotherapy simulator session, another part of the planning process. However I was met with apologies as someone had been supposed to call me to tell me that as the radiotherapy had been postponed, the simulator session had been cancelled! Ah well, it was worth going to St Thomas’s to see friends in the PET centre, and City Hospital!

This evening I am going down to the dive club. It’s a bit too soon to get back into the water, but not too soon to start thinking about it! Must get the kit out and give it the annual check and service! (Onwards and upwards - or should that be downwards? ;))

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Well after writing the blog up on Friday, I ended up going out for a pub lunch again!

The steak and ale pie, washed down with a pint of bitter and, as it was someone’s birthday, a glass of champagne, was very enjoyable!

So there are definite signs that my sense of taste might be showing some recovery. It is really odd, of the 5 recognised taste senses (sweet, bitter, sour, salt and savoury) the one most affected is my ability to taste sweet things, followed by salt and savoury. Consequently things that I expect to taste bitter (like beer!) taste fine, but things that don’t have that component either taste odd, very bland or just unpleasant. The oddest things are chocolate and honey, both of which have sweet and bitter components, but I can only taste the bitterness! Fizzy drinks can be strange too because while artificial sweetners like aspartame have always tasted bitter to me - even under normal circumstances - any hint of them now really affects me. Unfortunately some normally sweetened drinks contain artificial sweeteners, so they are off the menu too.

As for the rest of the weekend, after Friday’s sun Saturday was wet and cold, which was a pity as we have some runner beans to plant out. Sunday started cold but dry, but the sun came out mid-morning, middle daughter cut the grass (thank you!) while I did a load of ironing - and we still didn’t get the beans planted! However I did enjoy roast beef last night (more evidence of the returning sense of taste?) with a glass or two of red wine!

This morning also started wet - the skies were really dark and thundery half an hour ago, but seem brighter now.

On the health front the GvHd seems to be calming down. My skin is still very dry, itchy and flaky, but not as bad has it has been, and the cracks and fissures on my fingers are starting to heal. However my legs and feet are suffering the same sort of thing, so walking can be a bit uncomfortable - I feel a bit like Hans Christian Andersons “Little Mermaid” for whom every step on land felt like walking on knives! (For those of you who don’t know the real version, you can read the story here). Still they will heal in time too!

Next event on the social calendar is the review with Linny at Guy’s on Wednesday - perhaps all will become clear about the radiotherapy - I’ll post more then!

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