Day 46 - Settling in at home
by
Malcolm!
on Mon 05 Nov 2007 05:01 PM HKT
I've been home for ten days or so now and I'm beginning
to build myself a routine. There's not a lot to it : pills,
food, shower, walks. And of course there's preparation and cleanup for
each of them which can often take a while - but it's a start.
I'm on
T-Day+46. The first 100
days post transplant are the critical ones. During these 3 months the
transplanted cells are bedding in, and I'm taking various different
immunosuppressants. These are the same drugs that someone with a heart or
kidney transplant would take. The big difference is that I am getting smaller
doses than they would and my doses will reduce over time - whereas someone
with a kidney transplant would be taking them for
life.
And after the 100 days they still reckon a minimum of
six months, and more likely the best part of a year before I'm strong and well
enough to consider work. But hey - I'm home, I'm uneventful, I'm recovering, and
I'll settle for that for right now.
The docs have stressed that I
should 'expect problems' between here and Christmas. As we reduce my drug load the transplanted
immune system will gradually become more active. And at some point the graft is likely to decide there's a part of me it
doesn't like and I have to be ready for that. So if I suddenly post from back inside the hospital I'm
hoping it can be considered part of the predicted course, rather than an
emergency... We shall see.
The first day or two at home
were odd, and not all in a pleasant way. My stomach seemed to have shrunk to the size of
a golf ball - and a mouthful or two of anything was enough to give me
indigestion for hours. Having real food
again after months of living on
hospital gunk and the intravenous
milkshake mix also shocked my insides a little. That seems mostly to have passed now, and I'm beginning to feel that I can
eat almost normally again. Of course
I have to be very careful about what I'm eating, and how it's prepared,
but being able to eat a plateful of something without having to think "that's
ten spoonfuls, let's just pause for two minutes and see how my stomach reacts"
is a great improvement. And thank goodness my sense of taste is
slowly returning. Texture can only take you so far.
I'm aware that I could have posted to the blog much
sooner than this. In fact I've had three or four half written post in my drafts
folder waiting to be completed and mailed for several days - but somehow none of
them seemed appropriate, and I haven't been able to complete them in a way that
feels right. I've also received emails to which I know I should send
replies, and again - I'm finding that I'm not finishing them. Sorry - but you'll
have to bear with me. I seem to be living my life at about half speed at
the moment - both mentally and
physically.
Counting back to the beginning of July (when I went
back into hospital to deal with the return of my leukaemia) I've spent about
three of the past four months in an isolation room in hospital (two long stints
of approx. 6 weeks with a gap in the middle). Even with visitors, all
the medical personnel, email and phone calls I was still spending a lot
of time alone inside my head. And what with the relapse, two big
lots of chemo, all the other drugs, the associated mental confusion and
inability to concentrate or focus, the infections, pain, lack of sleep, the
transplant, fear, ignorance, and all the other stuff going on in
there - my head has not always been an easy place to be.
I know that's a big chunk of self pity, and I promised
myself not to do that in public. I also know that I need to say or
shout it out at least once. So. Done. Move
on.
Coming home
has involved lots of changes
in mental attitude too. In
hospital I was pretty much able to just exist with no effort at all. Apart from
bathroom breaks almost everything was done for me. I was told when to take
my meds, food arrived, etc. Half the time I was being drip fed so I didn't
even need to eat. Being at home and having to look after myself (to
some extent) and be responsible for my
medication schedule, feeding myself during the
day, exercise, etc. is good as it
makes me concentrate on what is going on. Otherwise I'd be quite happy to drift
and just let time pass in a haze.....
Exactly a week ago I wrote this
(though it never got posted):
At the moment I'm
absolutely knackered. Just got back from my first 'routine' trip to the
hospital for a checkup.God it was busy in the clinic - I never realised there
were so many flavours of acute and chronic leukaemia and lymphoma and all the
rest - but we all end up there - with a plastic tube hanging out of our chests
and nurses sucking blood for the vampires to test.....
The good news is
that I'm fine - there's nothing abnormal
in the initial results and the doc won't need to see me for a fortnight. I
still need to go back next week to have the tests and my tubes flushed,
- but dont need to hang around nearly so
long...
This week I'm still tired, but not as much - so I must
be making progress even if I don't feel it. I got back a couple of hours
ago, and was still tired from the walking etc, still needed to lie down and rest
- but I'm not feeling like collapsing which I did then. As always - small
steps.
This time my haemoglobin counts are low enough that I
have to go back for a blood transfusion on Wednesday. While I'd prefer not
to need it - it's part of the standard treatment. There's one other patient here
who I've been following - she's almost exactly 6 months further along than me -
and she's still getting the occasional unit of blood 7 months after her
transplant - so I'll probably need them for some time to
come.
Enough. I could ramble on but this message
has been days in the making and if I dont post it now it may never see the light
of your screen....
