Peter’s Hospital Diary

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