Peter’s Hospital Diary

…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!

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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!

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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!

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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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