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The last appointment
was a bit of an anniversary. It was almost exactly two years since
I'd been admitted on to Dacie ward in preparation for my bone marrow
transplant. Whilst it was certainly a milestone, not all the news
was worth celebrating as there have been more 'developments' with
the recovery. I returned back to the UK after a great four week
vacation in the UAE. The weather during Christmas is just like summer
time in the UK, and it was a great opportunity to get a lot of kitesurfing
in as I'd been neglecting it somewhat during the last year.
Prior to my vacation I'd had another PCR test as is standard, but
I didn't want to know the results until I returned. My thinking
was that if the counts fell then it was good news, and if they were
to rise then I wouldn't want the news to spoil the holiday. My consultant,
someone who I've grown to know and develop an understanding with
over the last 18 months has always warned me that the achievement
of a remission using the DLI method could take some time. The difference
with a cancer like leukaemia to other more 'tangible' cancers like
tumours, is that you may still harbour the disease but there are
no outward signs of it. The saying out of sight, out of mind has
a context here.
Although I've been well aware of my relapse, the DLI is a long term
treatment which has extremely good results, so there has not been
any rush to get more DLI injections. Instead we are following a
plan of injections every six months, where every subsequent contains
an ever larger quantity of the donor's lymphocytes.
Despite everything I've written, it still came as a shock to hear
that my counts had more than doubled to a level of 44% (from 18%
in November). I have always tended to place significance on the
blood results, so those readings certainly caught my attention.
I've been going to hospital by myself for some time now the appointment
only requires a sample of blood to be taken and a chat with the
consultant. However on this accession my consultant was off sick,
and I was given the news by another more junior member of his team.
She certainly had a look of concern with I quickly mirrored. The
upshot of that appointment was that I'd need to speak with my consultant,
but that there was a certain urgency to taken some action. This
left me with plenty to think about for the rest of the day.
I felt a lot better a couple of days later when I eventually spoke
with my consultant. He reassured me than even with this high PCR
count there was no need to start worrying. In fact there was no
need to bring forward the next planned DLI injection in April. The
relapse at this point is no longer molecular, but almost certainly
cellular. Meaning that it's a definitive relapse that could well
be detected by less sensitive blood tests. Until now, the leukaemia
was only detectable with very high level resolution tests, where
as now we were getting to the stage where it was likely that the
presence of the leukaemia and it's effects could start showing on
the regular blood tests.
Perhaps that could explain the white cell count, which was the highest
it's been since the transplant, and more like the level I was used
to seeing before the bone marrow transplant 2 years ago. With this
going on, I only realised the night before that my second anniversary
of the transplant (February 1st 2002) was approaching. Although
I didn't feel there was much to celebrate given the growing relapse
I invited my father and brother for a celebratory lunch (my mother
was still in the UAE). Relapse or not, it's still great to be alive,
two years after receiving a stranger's bone marrow.
I was looking forward to the two year mark, as it meant that I'd
be able to get in touch with my donor and thank her personally for
giving me the opportunity of another chance of life. However, as
I'm still receiving DLI injections of her white cells, I'm not allowed
to get in touch with her. The two year time delay before contacting
the donor, is effectively a two year gap starting after the last
kind of any donation from the donor. As I've had more blood from
her in the form of the DLI injections the two year gap starts from
when I have my last injection. So it's going to be quite a long
time before I get in touch with her. In the meantime I'll have to
settle on writing anonymous cards.
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