Peter’s Hospital Diary

In fact I am tempted to use the stock answer to Parliamentary questions “I refer the reader to my previous post of…” as today followed the standard pattern of up early, Arrive at Guy’s, donate an armful of blood etc!

There was a slight delay though as I was supposed to have blood taken for a chimerism test, and that hadn’t been ordered, so rather than stick two needles in my arm, I waited until the order was done, then in to see Dr Kazmi. He was delighted at the news that my mouth is better, and thinks that it might be because the GvHd is settling down. As to what that means longer term he cannot say. It has gone on for a while, and I was technically in remission when I had the last DLI and so there is a possibility that the donor lymphocytes have cleared out residual disease, and that they will continue to act at a subclinical level as I should be producing them myself as required. However it is early days! Still he was pleased with the progress – and needless to say, so am I! – especially when you consider the conversations we were having last January, not a good time.

My blood counts are good, apart from haemoglobin, which is a little low, possibly caused by on of the antibiotics, but my CD4 count is a little low (CD4 is a protein expressed on the surface of white blood cells known collectively as T cells) so I cannot stop it yet. I also remain on other antibiotics as my immune system is still not fully recovered. So we continue to monitor things – next check up in a month, and perhaps another PET scan in two months or so.

Then it was in to see Rachel, the dietician! My weight was actually down a pound or so since last time, but that isn’t really significant – lighter clothes perhaps! More importantly my strength is improved, and she thought I looked generally ‘better’. Now my mouth is less sore, my food intake might improve too!

It was good to see two fellow patients – Sarah of like2like fame and a newcomer to this blog, Kieren. I didn’t get a chance to talk to Sarah, but she was looking well! Kieren had a transplant some years ago, and the last time I saw him was 5 years ago when we both appeared on “City Hospital” interviewed by Mathew Kelly. Kieren has been in remission for seven years after a second sibling donated transplant so it was good to swap experiences! He is back at work as a builder, in Kent, so anyone in North Kent needing building work doing, drop me a note and I’ll send you his details!

One of the side effects of the improvement in my mouth is that can eat ‘proper’ bacon sarnies! That is with a top and bottom to them – and tomato sauce no longer causes a problem! I am still drinking the food supplements at lunchtime, but as my sense of taste returns, I am finding that they are quite pleasant!

So very much.. “Onwards and Upwards!