Sorry I haven't updated the web site for so long. This time I'd like to blame it on the computer, as we've been having problems with it crashing. I've only made two visits to the hospital after the last posting, once on the 23rd May and last week on the 6th June. There isn't much to say about the appointments themselves except that the bloods seem to be hanging around the 2-2.5 region for the white blood counts, and the haemoglobin is falling ever so slightly after the blood transfusion boosted them last month. Oh, and I've passed the critical 100 day barrier without incident.

One piece of promising news though is that the results from the first PCR test have arrived. The PCR test is used to determine the level of the Philadelphia chromosome, that causes the chronic myeloid leukaemia (CML) I had. The tests can take up to a month, so the results are actually from blood taken on 9th May. They showed that my levels were indeed lower than could usually be expected, and this can be read as a good piece of news for a change. The doctors hope to see a continuing reduction in the Philadelphia chromosome over the next couple of months with the goal of eventually becoming negative. We'll have to keep you posted on that, but it's really the next milestone. Further, as I haven't experienced much GVHD, we have started to lower the dosage of the cyclosporine with the aim of coming off it totally by August if things go well. At the moment I'm down to 50mg twice a day. Remember at hospital I was on 150 mg twice a day, so it's quite a drop.

Over the last month things have continued to improve physically as well as haematologically. I've continued going on brisk walks with Mum, although I've slacked off recently due to various projects at home. I've also got in to a routine of doing some simple weight lifting exercises for the upper body, like dumbbell raises, and pull-ups in a bid to rebuild the muscle that I lost in hospital. I'd already noticed that the legs had gained some muscle and strength, but the upper body exercises have really made a difference over the last four weeks. I'm able to do many more repetitions than I was able to and generally feel relatively strong again. I've also started doing some simple Yoga stretching exercises with Mum, which in the last two weeks has transformed my flexibility.

In addition, I've been driving quite a bit more, and have travelled down to the coast with Mum to enjoy the beach and fresh air, as well as the kite surfing. If you can't go out on the water, the next best thing is to watch the boys play, but I'm already itching to get out again and show them who's the boss :-). I even attended a windsurfing car boot sale to flog my old windsurfing kit with the help of my brother. Just getting out the house a little more has made me feel like a normal person again. You feel normal by participating in mundane events which are normally taken for granted. One of the highlights has been the squash. Before you think I'm suicidal, I have been pacing myself carefully and taking care not to over exert myself, but with each successive game I'm feeling stronger and more capable than before. Recently I've even managed to steal a few wins, but I can only play a game at a time before resting for 15 mins and attempting another game.

With the constant improvement in fitness I was therefore a little surprised to learn that my haemoglobin levels hadn't risen. It's a little bit odd, as I'm feeling as good inside now as I did just before the operation, but my haemoglobin count is down at around 9.6. Note that a few months ago I was nearly fainting each time I stood up with a similar count, so I can only assume that my body has adjusted accordingly in the same way you learn to cope with less oxygen at high altitude. The doctor did assure me that it could take many more months before the haemoglobin counts start to show significant rises as the new marrow takes quite a long time to become totally accustomed to the new environment. It was also explained that the marrow bed is also very fragile and may not even been as effective as before. It's analogous to a flower bed not being as fertile as, say, before the transplant.