Peter’s Hospital Diary

I have frequently mentioned a fellow blogger John and his disabled rants blog – so it is with great sadness that I read the post from his mother, Margaret, saying that John passed away peacfully in his sleep yesterday. The full text is here.

I never met John in person – in fact he found me and my blog, and I accidentally marked his first comment as ‘Spam’! It wasn’t until a few months later that I recovered it and added a reply, forging a friendship in cyberspace, re-inforced by our cross postings and the occasional e mail, and it is on this basis that I write the following.

John was in a difficult position. Having survived a stem cell transplant to overcome leukaemia, he developed chronic GvHd, which, coupled with the after effects of a pseudomonas infection in his lungs, left him in a physically poor condition, leading ultimately to his his being wheelchair bound.

His blog chronicled both his trials and tribulations in dealing with the day to day difficulties this brought him as well as his ongoing treatment by ‘Merlin’ during his frequent visits to “Heath Towers”. His tales of Merlin ‘and his fellow wizards’, told in his unique style, certainly made me smile, and I know that many of you also found his blog equally entertaining!

While I think he held his health care team in great affection, the same could not be said of his local bureaucrats, with whom he felt anger and frustration in equal measure. Ironically he had recently won a long running battle to obtain the grants necessary to enable the conversion and modification of his house that would have improved the quality of his life. Sadly it was too late for him to gain the benefit from it.

However it was John’s strength of character, and his determination not to let his disability affect his enjoyment of life, that shone like a beacon to us all. He had a love of cooking – in particular, T-bone steaks – and for a while our discussions of the ideal ‘bacon sarnie’, together with those of other contributors, filled a few pages of this blog! (We never did come up with the ideal recipe!).

John, if you you are reading this on some celestial internet – you fought a good fight. Thank you for inspiring me in my fight.

My thoughts are with your wife and daughter, and all the other members of your extended family.

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…tooth! Cast you mind back Dear Reader, to a post I made last August I said that I had broken a tooth and had to have a bit of emergency treatment to smooth off the edges (it had been root filled on an earlier occasion). My dentist was reluctant to remove it, given my medical history, but referred me to Guys, who did nothing, and finally to the local hospital (The QA in Portsmouth) who saw me about 6 weeks ago. Today the offending stump was finally removed!

I have to say I am a total wuss when it comes to dentistry, but in this case the anticipation was worse than the reality! The dental surgeon was outstanding. Having numbed me up (the most painful bit) he remarked that he was just going to put a bit of pressure on it to ensure the anaesthetic was working – and 20 seconds later – it was done! The anaesthetic has worn off now, but apart from a little soreness, it is pain free!

Vicki brought Olivia over yesterday. Now ‘toddling’ with confidence, she was fascinated by the fridge magnets, but has yet to understand the difference between ferrous and non-ferrous materials, and looked most perplexed when the magnets wouldn’t stick to the wooden cupboard doors! Her vocabulary is developing too, with quite a repertoire of sounds, a few of which resemble english! She is a very happy and ‘chuckley’ little girl!

Finally, great news on the health front from Simon, who had the results of his PET scan of 10 days ago. It was all clear, and in his own words “Phew”! Brilliant news and on that note…

Onwards and Upwards!

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Well I did say that last week would be busy – and it was, but very rewarding! The majority of the week was spent on a residential course for another module on my computing course. Not quite as intensive as the previous two (only 3 hours of exams at the end of the week) but very enjoyable. I was also able to raid the library for some books to help me with the coursework. I had forgotten just how good it is to have access to a good technical library! Now all I have to do is identify and reference the relevant parts of the books. In fact the technical content of the coursework is fairly straightforward – the hard part is remembering and justifying what I write, and getting the appropriate references – and referencing system.

I went from university up to Worcester for a weekend of training with LeukaemiaCare – the first course I have taken for some months. However it was as enjoyable as ever, good to see my fellow trainers, Neil and Suzanne, and welcome Channelle to the team. The course members were a really responsive and enthusiastic group to train, so although I felt quite tired at the end of each day, it was very rewarding and good to get back to it!

After that it was a trip back home for a rest!

I had been hoping to go on a diving expedition this week – not in a diving role, as I still have a medical to pass – but in a support role. However the exped now has a full complement of divers so there is no space for me. 🙁

On the health front, I still have some aches and pains, so I am beginning to think that perhaps GvHd is affecting the interstitial tissues and maybe the ECP would be a good idea. My next appointment with the dermatologists is on 19 May, so I’ll see what it is like then. My mouth was a bit sore yesterday too, but I think that was all the talking over the weekend. It is much better this morning!

However, on the upside, I jumped on the bathroom scales last night, and discovered I have put on about eleven pounds in the last month! I think I mentioned that my appetite has been getting better, and I certainly ate a lot last week, so I was quite pleased. A few more and I shall be 10 stone! (63Kg!) I was still wearing a ‘small’ size LeukaemiaCare polo shirt though!

So on that note – very definitely – Onwards and Upwards!

Tags: GvHd, Leukaemia CARE

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Or roughly translated – “The Long Term Transplant Effects Clinic” which as I surmised in a previous post, is a new clinic to look at the long term follow up of stem cell transplant patients.

However, before turning up at the clinic, I met up with Simon (first time in about 18 months!) who happened to be having his PET scan! I was early, so we walked over to St Thomas’s and chatted about his cancer journey to date, until it was time for him to go off for the scan, and for me to get over to Guy’s.

And it was with some surprise that instead of being greeted with a red card signifying my place in the queue for the phlebotomists, I was given a large questionnaire to complete about my current state of health, any problems, and a psychological section about how I and my family had coped with the transplant. Only 10 pages? I could write a book – or a blog – about it!

However, after filling in the questionnaire, it was in to see Dr Raj, and a clinical psychologist to discuss the questionnaire. I suppose the significant problems have been the recent HIB infection, and the aching joints, however the feeling is that I am sufferring from low level chronic GvHd. This might be causing the occasional grittiness in my eyes (although it isn’t stopping me from wearing contact lenses) and the lower tolerance to exercise. However I feel pretty healthy in myself. But this then raises the question of whether I have just got used to how I am – learning to live with it. As we came to the end of the questionnaire, and the psychological section, we did turn to the blog, and had a few giggles at some of the comments I have made!

Anyway, I have been encouraged to think about the photopheresis (or Extracorporeal photopheresis – ECP – to give it the correct title) again. the rationale being that chronic GvHd won’t get better on its own, the alternative treatment would be immuno-suppressants, and if it does get worse, it is much harder to reverse the effects. My reservations remain that I have an immune system that appears to be working as I am in remission, and should I tinker with a working system for little apparent gain? The consensus is that there is no data to suggest that ECP does affect relapse rates – but neither is there any to suggest that there isn’t! Anyway, I have another month to think about it as my next appointment at the dermatology clinic is on 19th May.

However, one of the benefits of registering for my postgraduate course is that I get access to a lot of online resources, including one called Athens. It is effectively an online library (no point in posting a link, as unless you are a registered student of a subscribing organisation, you can’t use it) for academic ejournals and ebooks. Athens contains a number of medical journals, so I might do a little research of my own. (Did I just hear a collective sigh of “Oh no” from the haematology and dermatology departments?)

The highlight of the visit to Guy’s was seeing Liz – one of the nurse specialists in the haematology department who started af Guy’s at about the same time I had my last transplant. We had a good chat about this and that – before she steered me off to a little side room to take the usual armful of blood! I might have known I wouldn’t get away with it!

This rather delayed me, and the plan had been to wander back to St Thomas’s and go for a long overdue beer (or two) with Simon. However he was out first, so we met at Waterloo, retired to a nearby pub and swapped cancer war stories! There was a bit of one upmanship “I’ve got more scars that you” – “but mine are bigger – and “I had two drains after my op” but that’s just a boy thing!

Joking apart, it was good to see you Simon, and you looked really well! However, while war stories were fine, the realities are that our beer capacity and stamina weren’t what they were, so rather than head off for a bite to eat, we went our separate ways, and I got home at about 8:30.

But it was a good day, great to see Simon, and we did indeed raise our glasses to…

Onwards and upwards!

Tags: GvHd

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Sorry for the relatively large delay in posting – it has been a busy week! Regular readers may cast their mind back a year when Felicity organised a Wedding Fair at our local church. This was very successful, so a few months ago she was asked to organise another! This has taken up a lot of her time (and some of mine!) but the event, held on Saturday, was a great success with more visitors and more exhibitors – and this in spite of the weather, which was not quite as good as last year – but at least it didn’t snow!

On the health front I think I have shaken off the infection (Hib) – with the help of the anti-biotics. My appetite is much better and I have have regained all the weight I lost in the last couple of months – and added a bit as well. Bacon sandwiches have made a welcome return to my diet too, after their brief absence! Some of my joints and muscles still ache, but I hope that will pass with time. I have another appointment at Guy’s this Thursday in what I think is a new clinic – ‘long term post transplant follow up’ (but I have no doubt that they will take the usual armful of blood!). This should have been last Thursday, but I had a call earlier in the week postponing by seven days. Next week I am off for another module in my computer science course, followed by a week-end of training for LeukaemiaCare so it will be a busy few days, but I am looking forward to seeing my fellow trainers and staff at LeukaemiaCare’s headquarters.

All this activity really does contribute to ‘Getting my Life back’ so I hope it continues “Onwards and Upwards”!

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Skipping quickly past the famous Belgian reference (the other famous Belgian being Hercule Poirot) this was the scene that greeted us early yesterday morning.
I know we weren’t alone in getting this snow shower, but it is very rare and it has been several years since the garden looked like this. We were out most of the day, but it was starting to melt as we left, and it had all gone by the time we arrived back home this evening. Still it was very pretty while it lasted, but alas not enough time to even think about making a snowman! There are some more snow scenes here and here in the gallery. (And I must update the gallery with some of the recent pictures of Olivia)
The reason we were out was for a family gathering – there are several family birthdays in March and April, so it was an opportunity to get together. Although not a March Birthday girl, Olivia was in good form, so I had to include this photo of her, with Vicki!
On the health side, I have put on a couple of Kg in the last 10 days, so weightwise, definitely upwards, and I also had a long chat with Simon on Friday. If you read his comment on Thursday’s post, you will see that he has had an abnormal CT scan, showing an enlarged lymph node in his chest. The problem with CT scans is that while they show the organ’s outline, they don’t show why it may be enlarged, or what is going on in there. Lymph nodes can enlarge for lots of reasons, but a PET scan can determine if there is abnormal cell activity in the node. So Simon is off to have another PET scan, which will show if there is any suspicious activity in the node. If there is (and we all have our fingers crossed that there isn’t!) it can be treated, and if there isn’t, then it is an important reassurance. That said, I know how waiting for results can prey on the mind – Simon, we are with you all the way – and hope that you too will continue…

Onwards and Upwards!

Tags: Olivia, PET Scans, Snow

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At post 301, I did consider changing the name of the blog. It is something I have considered before, as the blog was originally designed to allow me to update my progress during my last stem cell transplant. That was over 2 years ago (!) but the blog continued to chart the ups (and downs!) of the treatment.

The last hospital stay was over 15 months ago, and since then the blog has concentrated on aspects of “getting my life back” in all its various forms. So it is no longer a “Hospital Diary” as such.

The name change I considered was “Peter’s Digital Diary” but, as you will recall in that last post, WordPress is a content management system. In simple terms, this means that if I change the title, it is reflected in the last 300 posts – including those that I wrote while I was in hospital – which seems a bit of a pity. So for the moment I have left the title alone, but I have made some minor changes to the ‘strap line’. Any thoughts from the readership would be welcome!

My appetite continues to improve and I have put on a little weight. However I mentioned (in the comments to the last post) that I was looking forward to sardines on toast – something I used to enjoy as a snack. Sadly they weren’t quite as nice as my imagination lead me to believe. They were OK, but were missing something. I have a bit of a problem with the smell of fish anyway – so this was a gentle reminder that although my sense of smell and taste are slowly returning to normal (or a new normality) – I’m not there yet! On a plus note, I can smell the blossom on the lemon tree! (Shown here in all its glory!) And I enjoyed a mild curry for lunch today – progress indeed!

On a more serious note… Patients who, as a result of the drugs “post code lottery” or rulings by NICE, have been denied expensive but potentially life saving or prolonging drugs have always had the option to get those on private prescription – BUT – the sting in the tail is that ALL NHS provided drugs then have to be bought privately – so the cost of treatment escalates dramatically. The rationale has been that it is “unfair for wealthy patients to ‘top-up’ their treatments” in this way and would lead to a “two tier system”. I personally disagree with that – if the NHS can’t or won’t supply a specific drug, then someone should be able to buy that themselves.

It now appears that the legality of the the government stance is dubious, and group of doctors are proposing to mount a legal challenge. They are looking to establish a ‘fighting fund’ to pay for any legal costs should they lose. Details are at the Doctors’ Forum.

One of the pleasures I had when convalescing was watching the variety of birds at the garden feeder. I was able to chase away the “Tree Rats” (Grey squirrels) that attempted to raid the feeders, but now I am not at home all day, these vermin have become a greater pest. So I visited my good friends at The Really Wild Bird Food Company for a squirrel proof bird feeder. And it seems to be working! The food and feeding stations are protected by a ‘cage’ which allows the birds in – but keeps the squirrels out. While I am doing a shameless plug, they do have a range of excellent value bird foods, much of it grown on their own farm – the prices even include delivery. Richard and Lesley are lovely people – so please have a look at their web site!

A longish post, so in time honoured fashion – Onwards and Upwards!

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So far the sniffles haven’t returned, although I seem to be coughing a bit more. However the really good news is that my appetite has returned. Bacon sandwiches have made a welcome return to my diet, as has ‘wet’ food such as Cottage Pie – and of course sponge puddings with lashings of custard! (I guess this is of no comfort to those on enteral feeding, like Chris – sorry Chris – food discussions – especially the ways of preparing a bacon sarnie – have been a feature of this blog in the past!) The Scandishakes and Calogen remain on standby, but I hope I will put on the weight that I lost in the last few weeks – and perhaps a bit more as I am still a few Kg below my ideal weight

On the tech front, I have just carried out a major upgrade to the WordPress software that powers the blog. You, dear reader, will probably notice little difference, except that pages may load a bit faster, but the ‘behind the scenes’ control pages have changed, and the database structure has changed slightly to allow for future enhancements. (Just to re-cap, WordPress is a content management system – all the posts, comments, and data about the poster or commenter are all stored in a relational database, and extracted as necessary to form the HTML pages that are served by the web server. Once data is in a database, it can be presented in a variety of different ways.) I am still finding my way round the new layout!

Olivia has been over today, but my camera battery was flat, so no photos this time – sorry!

Oh yes – I see this is the 300th post! Onwards and upwards!

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Not because of any treatment, but at the amount of effort for so little clinical time! The appointment was (appropriately) at Chinese Dentist time (2:30) so it was quite a leisurely start to the day. I caught the train at half 12, and arrived spot on time at Guy’s 2 hours later… to be sat in a waiting room for an hour. I was eventaully called in, gave a saliva sample, had my mouth inspected (all well) and was out agin in about 5 minutes! Plenty of time to get to the station and get home – 2 hours later. Next appointment in 6 months! “Was it worth it?” I ask myself. Well I suppose yes if the sample shows anything, but since I have been giving nose samples at my GP clinic (and they did a saliva sample 3 weeks ago) I do wonder!

Anyway, as you might gather, I’m feeling a whole lot better! I spent much of last weekend wrapped up warm and with long lie-ins, but by the time my birthday came round on Monday, I was up and bout. My parents were down for the weekend, and we had a fairly relaxing time. The weather was mixed, but sunny enough to make sitting in the conservatory pleasant – which is what we did.

I finished the anti-biotics today, so I will be checking carefully for any signs of any returning symptoms, but I hope this time it has been knocked on the head. And my appetite has returned – another bonus!

I had a long chat with Simon this evening. He is in excellent spirits and is looking forward to the next stages of “getting his life back”. He has commented on the previous post with his news. Sadly nothing on John’s blog, so I hope all is OK for him. However he did say that the builders were starting work on the adaptations to his house and he would be away, so maybe he just hasn’t had internet access.

So, to one and all – Onwards and Upwards!

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I’m sorry that it has been a while since I posted, but this last week hasn’t been one of the best, healthwise. Nothing too dramatic, just not very good. In other ways it has been quite exciting! However before I go on, I know what you really look for on the blog, and here she is! She wasn’t completely 100% when she came round, hence the flushed cheeks, but you will probably see a few changes!
She is now definitely a biped! No more crawling on all fours, she is up and off with a good turn of speed! With the additional load on her legs and the greater energy output, she is fining down and losing the baby tubbiness, especially on her legs and arms! Her speech is developing too, with recognisable versions of Mummy and Daddy and, of course, Max. If you ask her what noise Max makes, it is “uff, uff”! Other animal sounds are more conventional (and easier to say) – quack, moo etc!!

As she has been under the weather, so have I. I finished the last course of anti-biotics ten days ago, as I said in the previous post. All went well for a couple of days, but slowly and surely, the symptoms started returning. I spent quite a lot of time in bed over the week-end trying to shake it off – but is wasn’t helped by an early (6am) start on Monday (more of that later). By the time Tuesday arrived I felt pretty rough and as soon as I got in from work, I went to bed. I had a clinic appointment at my GP on Wednesday (more nasal swabs) but again felt pretty weak – my appetite had gone and I was back on my old friend, the Scandishake! Getting up at 6 again on Thursday to make the trip to Guys was a real effort, but worth it as I received another course of ant-biotics, and the lung function test didn’t show as much of a deterioration as I might have expected with the cough. In fact my lungs are clear, but I ache all over, especially my ribs where my GP thinks I have probably strained the muscles around my rib cage – which of course control breathing, and could be a contributary factor to the breathlessness. I certainly felt very weak, and I was a bit horrified to discover that I have lost about 5lbs in the last 3 or 4 weeks. In fact the last time I felt this weak was just before I had my ambulance trip to Southampton 15 months ago, although having a haemoglobin count of about 6.5 was a major factor – the result of the radio and chemo therapies. (It is now back at just under 12)

So at least I knew how to avert that – more scandishakes, and more food! (And I have just eaten and enjoyed the biggest meals in the last two weeks)

Two days on, after starting the anti-biotics, I feel a lot better. My appetite is returning, as are my energy levels. It remains to be seen what happens when the course finishes next Wednesday!

Enough of the gloom and doom! There was an exciting event in the week. You may recall that I have been doing a series of short courses in a branch of Computer Science. I have decided to formally enrol as a postgraduate student to gain a recognised qualification. The initial registration is for a PGCert, with the option of continuing to PGDip, and possibly an MSc. So I am a student again! Registration was on Monday, with lots of lectures and talks about distance learning, and PG study. Very exciting – and slightly scary!

With all this activity and health problems, I have rather ignored Simon (Sorry, Simon) who has now come to the end of his chemo sessions, but now leaves his ‘comfort zone’ of the routine visits to the day unit, and goes into the monitoring phase. However we did exchange texts yesterday and today, and he ‘sounded’ in good spirits! The only blip really is nothing from John.

So on those notes, I can say with a bit more confidence “Onwards and Upwards”

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