Just over a year ago, in the first days of July 2007, I was told that I'd relapsed
and the leukaemia was back. I'm pleased to say that the first anniversary of the relapse passed without my even noticing it until I started writing this
post.
When I
got the phone call with the test results of course I was upset - but it wasn't
the shock it could have been. Two or three months after my original
diagnosis I'd been told that my particular Leukaemia variant gave me a 'poor
prognosis' for long term survival without a transplant, and from that point on
our focus had been on finding a donor, and getting a transplant. The
relapse was just another obstacle in the course of my treatment. A
big one to be sure - but nothing like it could have been if I hadn't been
looking past it before it even
happened.
Another rock on the path came two or three weeks
later when my first Hickman line split (after 11 months). It's only now
when I compare the way they extracted that
first tube and the procedure to
extract the second one that I realise how worried the doctors were the
first time round.
This time the
procedure was done in a day
ward on a bed with a curtain round
it. The team was a doctor, a
nurse, and a med student to observe. Last time I was in an operating
theatre with two surgeons, a couple of assistants and
an anaesthetist as they originally
planned to give me general
anaesthetic. They had some fancy imaging device to allow them to see what
was going on in real time, and they made two holes in my skin: one at
the exit site, and the other
where the tube had split over my collar bone. The worry was that if
the split had seriously weakened the tube it might have broken and left either
small fragments or worse a full six inches of plastic inside my
vena cava to be washed into my heart - which could have been fatal.
Just to put it
in perspective - I've had a 30cm "Y" shaped thing hanging out of my chest
for 22 months. The tubes needed to be flushed at least weekly. This involved a
nurse sterilising one tube with alcohol wipes, removing the
cap, releasing the clamp, removing 5ml of blood with syringe 1, injecting
10ml of saline solution to flush the tube (syringe 2) then 5 ml of
heparin saline with number 3 to stop blood coagulating in the tube. Then
repeat the whole process with the second leg of the "Y" tube. This has meant a hospital or clinic visit every week
(apart from the ones where I was already
hospitalised).
The daily shower
routine was my responsibility. Get a ziplock or similar plastic bag and
stick as much of the tube into it as
possible. Seal the bag with micropore tape, and stick it to my chest
upside down so no water runs in. Shower, (curse when the bag comes unstuck
from the chest and needs re-sticking with wet fingers). Then the after shower
cleansing routine: 3 alcohol wipes for the
exit site. 3 more for the surrounding skin. 3 for the stem of the "Y", and
3 for each leg of the tube. Then stick the tube into its little cotton
bag that kept it safe and controlled under my
shirt.
That was the
physical level. On the mental side I've had the 'back-of-my-mind' worry. The knowledge that a
good solid tug on the tube would be enough to pull it out of my chest or rip a
gash in the big vein in my neck. I'd catch my breath every time a kid
grabbed at the front of my shirt at the beach, or wake up and find the bag had slid off my chest and I'd rolled
over onto it or something. I didn't have any big dramas with it - but there were
continual reminders of the tube's presence throughout my
days.
Now it's been gone for almost 10 days. The
stitches have been out for three, and I'm almost ready to walk around without a
dressing or plaster over the site. I still find myself scratching, or at
least touching the site regularly - but it's like poking at the place where a
tooth's come out. It's tender, but you cant stop yourself poking it with
your tongue just to be sure it's real.
