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Today is a pretty special day. It's
like the beginning of the end of the Leukaemia episode. Ed Kanfer,
my doctor told me that the last two PCR tests have both shown up a
negative, which means clinically speaking at least, I'm leukaemia
free. The delivery of the news was just about as undramatic as the
transplant itself, but that doesn't reflect the emotion of the situation.
It was my most emotional moment since the diagnosis, and at the moment
feels a bit unreal. I'll confess and admit I had a joyful tear or
two after I left hospital, as this was the one bit of news we'd all
wanted to hear since May 2000.
I feel that it's appropriate to reiterate that I'm grateful to everyone
who has helped me especially to my family, friends, doctors and nurses
and hospital staff through out the last few months and before, and
most of all to the German woman who donated her bone marrow that saved
my life. It is difficult not to be excited at such news, but we need
to wait for a few more negative results to come through before finally
saying good riddance to the CML. As it's my father's birthday today,
this is like an extra present to him for all his hard work in looking
after me and Mum when we were both in hospital.
There's still plenty of progress to be made, so this doesn't mean
that I've got a clean bill of health and can reintegrate back into
society. There are still a couple of months to go before hopefully
that can happen. The situation requires us to slowly reduce the levels
of cyclosporine now at 50mg in the morning and 25mg at night until
I've come off the drug altogether. If after a couple of weeks there
haven't been any nasty reactions then I'll be allowed to go back to
work starting on a temporary basis providing work allows this. So
the whole thing depends upon how well I react or don't react to coming
off the cyclosporine.
Physically at least I'm feeling even better, as seems now to be the
case week by week. The endurance isn't quite there but that's hardly
surprising considering the haemoglobin count. It is interesting to
note, that at the moment I've got the same haemoglobin levels as when
I left hospital back in March (that seems ages ago now), yet then
I used to get head rushes and felt like fainting everytime I stood
up. Now I can go for walks, play squash and don't have any signs of
a headrush. The doctor said this is due to the body getting accustomed
to having a lower haemoglobin count and oxygen exchange process also
becomes more efficient.
My fingernails are growing out, but they are pretty weak at the moment.
The radiotherapy damages the cuticles so the fingernails grow back
a bit thinner, and as the thin end works its way out the nails become
fragile and the thick end can snap off as has already done on some
fingers.
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