Peter’s Hospital Diary

Can’t quite believe that 2 weeks have passed since I was released! It is a cold grey morning here in Hampshire – with a dusting of snow on the shed roof. I see the squirrels have attacked the bird feeder and there is a pile of bird seed on the lawn – it won’t be there for long!

I had another check up at Guy’s yesterday – travelling up by train as my counts have recovered sufficiently to allow limited mixing in public spaces! I did go off peak so there were fewer people about and a corresponding reduction in the risk of infection. Progress has been maintained and my blood chemistry is continuing to move in the right direction! I am still anaemic, haemoglobin is just below 10, but is improving, and the other markers that indicated possible liver/kidney function problems are reducing – although I did get a severe telling off for not drinking enough water!

One cause for concern is the weight loss I have experienced since discharge – about 4Kg. My appetite still isn’t that good – I suspect my stomach shrank while I was in isolation and inactive, and the various drugs aren’t helping my digestive system, so the solution is probably to eat little and often… Longer term it will be to get to a gym and start replacing the muscle that I have lost in the last 6 weeks. Need to get fit for that diving expedition in October!

The good news was the removal of the Hickman line – just over six weeks since it was inserted. I will have another scar where the cuff that held it in place was cut out, but as my scars have scars, that won’t matter too much! The stitches for that will come out next Thursday at the next check up.

I mentioned in one of the recent posts that the medical team are anxious to see how the underlying disease is progressing (or hopefully – regressing) and the need to wean me off the immuno-suppressants to allow the incoming immune system a free hand, while not encouraging chronic graft versus host disease (GvHd). My cylosporin levels are lower after we reduced the dose last week, and I am now booked in for a PET scan on 14 March. I think I said that the wait for the results will be a bit tense, but it has been arranged that the PET scan wil take place on the Tuesday, so the results will go to the case meeting on the Wednesday, for me to get them on Thursday 16th (well, that’s the plan!) I have been warned that there may be some active disease – the mode of operation of the immunological approach is slower than the chemotherapy, so I suppose we are looking for a continued reduction in activity. That said, my leg is swelling much less than before, possibly because I am more active, but I hope because whatever was causing the obstruction on the lymphatic drainage in my leg is reduced in size.

Now to go and find a calorie dense breakfast – bacon sandwiches sound appealing!