Peter’s Hospital Diary

As Richard has pointed out, it is a week since I last posted, but the major event was the trip to Guy’s yesterday.

It was a chilly and misty morning when I set out at the early (for me) hour of 7am to catch the train to London. Inevitably we were slightly delayed (fog on the line?) but I arrived only a few minutes late just after 9:30.

After having the customary armful of blood removed (which included blood for another chimerism test) I saw Orla, who is filling the role of Clinical Nurse Specialist in the clinic. I have known Orla a long time from her time in the day unit, so I was delighted when she thrust a hand at me with the announcement that she had become engaged at the weekend! Congratulations Orla! She had a look at some rough and dry patches of skin, but was uncertain whether it is GvHd or not, although the changes in my mouth might be indicative that something is happening.

My next stop was to see Rachel, the dietician, who was delighted to note that I had put on a couple of Kg since last time, however she did remark that while my diet seemed good, I could still do with a few more calories, so I have a new range of dietary supplements which add protein as well as carbohydrates. These are a new Fortisip range, and (to quote) “Not as gloopy”. I will try one today, although I feel rather full after my bacon, mushroom and tomato sandwich. (A little snack after a bowl of Special K.) Rachel also repeated the strength test on my hands (you squeeze a machine that tells you the power of your grip) and that had increased from about 25kg to 35kg on my weaker hand, which is further indication that my strength and stamina are improving. I had also noted that my walking pace was much faster while I was walking from Waterloo to Waterloo East, and I had taken the stairs at Guy’s, rather than the lift. That said I was pretty tired when I arrived home!

Finally I saw Dr Kazmi, accompanied by his two year old daughter, Sofia (he had problems with the nanny that morning!) He again was ambivalent about the evidence of GvHd, however his examination could not find any enlarged lymph nodes, so he thinks that the disease is under control, and as he said “We must keep our nerve and wait for the donor lymphocytes”. He sounded reasonably optimistic because we know that the disease is sensitive to the immune system because of last year’s response, so it remains a case of wait and see. However my next scheduled appointment is in four weeks, by when a firm reaction should have started. He is also going to book another PET scan for about six weeks time.

As I was leaving I saw some more familiar faces. First was the lovely Linny, who is leaving next week… to have a baby in May! I had suspected that she was expecting for a while, but hadn’t liked to say anything! Linny, if you read this, thank you for all that you have done and hope all goes well. I was one of Linny’s first patients at Guy’s – she started here about 2 weeks before I was discharged after my transplant.

I also saw fellow transplant patients Sarah and Jean. Sarah (of like2like fame) looked really well and I was delighted to see her. Jean also looked well, although her journey post transplant has been less smooth. Her chimerism tests showed that she was reverting back to her own immune system, and she has had donor lymphocytes which triggered GvHd which then went on to affect her liver. But as Isaid, she too looked really well, although she claims that it is the steroids she is taking to help control the GvHd!

I suppose it is a timely reminder that GvHd is not a trivial matter (although preferable to the alternative!) and of course John’s Blog is another reminder.

And talking of John’s blog, I note from his latest posting that he attended a “Question Time” recording in Newport! I didn’t see the programme (I had an early night after my London trip) but I shall look forward to reading about it!

Finally (at last??) I saw an interesting article about fruit juices in yesterday’s “Daily Telegraph”. No mention of Acai berries, but looks like more common fruit juices have a beneficial effect. Now if only the quality of Acai berry extracts could be guaranteed, (or the price dropped) I might be tempted – meanwhile, mine’s a Gin and Cloudy Apple Juice, or perhaps a Vodka and Cranberry!

Other than yesterday, the week was quiet. Garage tidying has finished, at last. It is frustrating though when a job that would normally take a day spreads out over nearly 3 weeks. I have also cleaned up the BBQ in preparation for the summer (OK, so it is going to snow on Sunday…) another job that took about 3 hours over three days rather than two hours in one go, but at least it is done!

So on that note….

Onwards and Upwards!