Peter’s Hospital Diary

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!

Tags: GvHd

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I meant to write this up yesterday, but it was such a lovely day that I spent most of it out and about pottering in the garden, doing the odd bit of watering or just enjoying the sunshine!

I don’t know if it is the passage of time or the boost given by the news from the last PET scan, but I seem to be feeling stronger as each day goes by. I am still a little surprised at how thin my arms seem to be, and the fact that I have lost 11lbs since I came out of hospital in February (on top of the 23Lbs I lost in the 12 months previously after the second autologous transplant) but I’m sure I will build my strength up again.

I have been reading another blog by a transplant patient (John, who has commented here and whose link I have added to the blogroll) He has recently been through a tough time in intensive care, and remarked that what he really wanted was to get his life back. I can empathise with that sentiment. Very early on on my cancer journey I had a visit from Tom (Dentist friend with whom I shared a house at Uni when we were students) who very astutely commented that one of the hardest things for some people is the fact that control of their lives is suddenly handed over to the medical team. Once I had thought about it, I realised how true that was, and one of the reasons for getting to immersed in the details of my treatment was to try and get some of that control back – or at least the illusion of some control!

There have been some defining moments on my journey when I have felt I have got my life back. One was last year when I went to a conference in Calpe, Spain. There is a rock there, about 300 metres high (a miniature Gibraltar!) which I walked to the top of one afternoon. It felt quite an achievment and at the top I felt “I had got my life back”! and from then on life got back to normal, diving and other recreational pursuits until the relapse later in the year. I suppose the last “normal” activity was a weekend diving in Plymouth just before I started the last lot of treatment. The next defining moment will be when I get back in the water again!

The rock…

…that I walked up! (April 2005)

Anyway – if you have a moment, do have a look at John’s site and give him some support – I know I have said it before, but it is worth repeating – it makes such a difference!

I see that after an overcast start, the sun is out again – so off to the conservatory and garden!

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I hope you all had a pleasant bank holiday weekend! The weather here was variable, cool on Saturday, sunny on Sunday and variable on Monday. Today started warm and dry, but it is looking decidedly overcast at the moment. Still, it was warm enough to get out into the garden and cut the grass, and I finished running some data cables round the house.

Not a lot to report health wise; I fell good and although my sense of taste hasn’t fully returned, it does seem to be getting back to normal, and my appetite has improved considerably. We went out to friends for dinner on Saturday, Gabor (the ‘John Peel’ of Hampshire – have you visited his podcast yet?) and Caroline – which was very enjoyable! Good menu choice Caroline!

One slight concern has been some swelling of my ankles during the day – particularly the right one, which was the one that used to swell up while I was in hospital because (we think) an enlarged lymph node was affecting the drainage – long term readers may remember me remarking on it at the time. Anyway, I rang Guy’s this afternoon and spoke to Linny (consultant) about it. The feeling is that it is either fluid retention or ‘leaky tissues’ caused by the GvHd but given the results of the recent PET scan, it is unlikely to be anything more sinister, which is reassuring! There are other symptoms of the GvHd returning (although not as bad as before) which lends weight to this theory! Anyway, I don’t have to go up to Guy’s before the next check up on the 8th. As for the GvHd, my skin is still very dry, and although the cracking on my hands is slowly healing, I am now getting cracking and splitting on my feet! But still a small price to pay!

The other bit of news is that the radiotherapy appointments have been put back. This was because I missed the original appointement, and so everything has slipped a week. I’m actually quite pleased as it means I will have the next check up before the radiotherapy might have started, and it will be closer to the expected date of the next PET scan, so the decision could be deferred until after that. While I’m all for giving the lymphoma a good kicking while it’s down, I don’t particularly want the radiotherapy unless I have to. We shall see!

Finally I was reflecting (again) over the last few months, so I thought I would post a recent photograph – taken today..

which you can compare and contrast with this one…

taken on 5th February! (Bit worrying that I appear to be wearing the same clothes… they have been washed in between times!) Biggest change seems to be the hair!

Onwards and upwards! 🙂

Tags: GvHd

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Well, how to follow yesterdays news!

I must say I was pretty elated after getting the news from Sala! I went on to see the consultant (Linny) who did say that it is difficult to quantify exactly how much it has shrunk, but for me the important thing is that there has been a dramatic change – and in the right direction! So even though the GvHd is unpleasant, so what?!

There was some discussion about starting the thalidomide, and that will be discussed at the next multi-disciplinary meeting. Appoarantly the last meeting that discussed the PET scan result was “impressed” with the result! I have another PET scan (number 15) being scheduled for 4 weeks time.

After the check up (and the continuing transfer of the Guy’s pharmacy stocks to my bedroom – mainly anti-biotics and steroid creams) I went for the repeat lung function test. Again a good result – the critical one (gas transfer efficiency) showed an improvement on last time, but just to be sure I have another one booked in May.

The next event of the day was the radiography planning session at St Thomas’s. This involved a CT scan and the tattooing of some calibration marks on my torso (I had something like an archery target in mind, but in practice they are 4 small dots)

I suppose the other question is whether I will go ahead with the radiography. I am scheduled for the simulator next week. This will be a dry run without the radiation to check the alignment and targetting. The course itself is due to start on 8 May, which is before the next check up, so I expect there to be some phone calls between now and then. I got the impression that the radiographer wants to go ahead, but perhaps it will be postponed until the results of the next PET scan.

During the afternoon, I saw Nicky, one of the producers of “City Hospital” and we discussewd how and when I will be on the programme. I’ll post details when I know more.

I can’t quite believe that it is 99 days since the transplant! I was thinking back over the last few months and looking at some of the earlier blog posts, and comparing this transplant with the previous two self donated ones.

The first one seemed the toughest at the time, with the unpleasant effects of the high dose chemotherapy, although that was the one that I think I recovered from the quickest. The second, with the radiotherapy, was fairly straightforward, although the recovery time after the transplant seemed to go on a long time, and I felt quite down during it – not helped by the loss of taste, which I think was slightly worse than that I am experiencing now. Of course distance blurs the memory, and there were all the other debulking sessions of chemotherapy, and the trials with the Rituximab, that took place in between transplants.

This transplant, although I was in hospital for longer, was similar to the last one in terms of how I felt while on the ward, and until the GvHd set in, recovery seemed to proceeding at the same pace. Of course, there is no GvHd in an autologous transplant, but if GvHd is the price to pay for the spectacular result so far – it is worth it! The critical bit will be keeping it under control so that it doesn’t become chronic, when it can become a more serious problem in its own right.

Wrinting this blog has been therapeutic too – and thank you all for your continuing support, comments, e mails etc.

So all in all, I feel pretty upbeat today! Sure, my skin is very dry still, and my sense of taste might be off (I have just not enjoyed a bacon sandwich!) but I am still here – the sun is shining, and the garden is green!

Onwards and very much upwards!

Tags: CT Scan, GvHd, Radiotherapy

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Good news! As I walked into the clinic this morning, I saw Sala, the senior reg. He had a big smile and told me that the PET scan result shows an 85% reduction in activity. The value of 85% is a bit empirical but the imporant thing is the trend!

I’m off to the radiography planning sesslon now, but I’ll post more either tonight when I get home or tomorrow.

Onwards and upwards!!

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It’s cold today! However the good news is that the GvHd has settled down a bit and I am feeling much better than I was on Sunday! Yesterday was a good day too.

I have an appointment for the radiography planning session (if it is needed – think positive) which will be this Thursday (it should have been last week, but I didn’t get the appointment letter in time) so this Thursday will be busy – check up in the morning followed by the trepeat lung function test, then over to St Thomas’s in the afternoon for the radiography planning.

So fingers crossed – onwards and upwards!

Tags: GvHd, Radiotherapy

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