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Saturday, July 19
Taking time for reflection...
by
Malcolm!
on Sat 19 Jul 2008 04:53 PM HKT
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.
Sunday, July 13
I'm Freeeeeeeeeeeeee!!!!
by
Malcolm!
on Sun 13 Jul 2008 07:24 PM HKT
On
Thursday I paid my monthly
visit to the hospital
and I am happy to
report that I am de-tubed, un-hickmaned, de-plasticified, non-bionic, all natural, with no artificial
additions!!!
I had a very nice doctor spend an hour working on
me with a scalpel and (I'm glad to say) a free hand with the local anaesthetic.
After lots of unnatural tugging under the skin, scrapings, dabbing up of blood
and muttered Cantonese conversation with the nurses he exited abruptly, leaving me with only two
stitches and my Hickman line dumped unceremoniously on a tray beside the
bed.
One of the nurses explained that he tends to over-run his time slots because he
makes very small incisions and works
slowly to leave small scars. I
got the impression that she felt this is not really the Hong Kong way. He's
probably supposed to make a bigger
cut , leave a bigger scar, get the
job done in half the time, and recommend a plastic surgeon to make it look
pretty afterwards - for a price, of course.
Be that as it may - I have a bruised chest
with a dressing taped to it and an appointment for the removal of my stitches
next week at the clinic here on
Lamma, and then another step on my path to the land of post-leukaemia
will be behind me.
It's been 22 months
since I had it inserted, 3 days since it was removed, and it's only beginning to
dawn on me just how glad I am that it's
gone.
Sunday, June 29
A link, and a story!!
by
Malcolm!
on Sun 29 Jun 2008 03:45 PM HKT
It must be fame.
Sort of. The rock pile has made the front page of the Lamma community
website!
Herman, who puts
vast amounts of effort and time into the lamma.com.hk website, has been gently
prompting me to write something for him for a while. Given my reluctance to
produce anything he's taken the matter into his own hands and posted a
story about the pile and my reasons for building it
etc..
It's strange how
what started out as a form of exercise has taken on a life of it's own.
It's not just people who see me sweating over a sandy boulder on the beach who
ask what I'm doing. Other people contribute a rock or two to the pile on their
daily walks, and I'm now have people coming up to me in the street and asking
whether I'm really the obsessive one who's been building "that big cairn
thing...."
Strange. But
good too. It's another sign that I'm moving on with my life. Leukaemia and
its after effects are no longer the first topics that spring to peoples minds
when they see me. There are other things to converse about and that
pleases me.
Saturday, June 21
Just for a change....
by
Malcolm!
on Sat 21 Jun 2008 12:18 PM HKT
Just for a change I'll stick a picture on the front page instead of consigning it to a dusty sub folder somewhere. This is my rock pile as of yesterday evening - still growing, still exercising me. I've got a sore throat and runny nose so I'm feeling pretty bleah - but this is my new immune system working :) so I'm trying to enjoy it.... 
Sunday, June 15
I'm half way to 90!
by
Malcolm!
on Sun 15 Jun 2008 10:59 PM HKT
Yesterday it was my birthday, I hung one more year on the line....
Actually it was Monday 9th, but I did remember the lyric on
Tuesday. It was a public holiday too, here in Hong Kong which was
nice. Didn't do a lot, though Kira did bring me breakfast in bed which was
special :)
And over the weekend we had a huge rainstorm. By huge I mean really
torrential. HK always has wet Junes, averaging 300+ mm of rainfall.
Well last weekend we had the months rain ration in 24 hours, and at one point
broke the record for most rain recorded in a single hour - I think it was over
140 mm - and they've been keeping records since the 1880's.
The approach path to our beach is along a little valley with a
stream/storm drain running through it. The end of the drain is meant to
flow through some pipes under the coast road, and thence down to the
sea. Of course the pipes silted up and rusted through years ago, so when we get
a big rain the valley floods until it crests over the road and then it all
rushes over the beach to the sea. This time the overnight overflow
carved a channel almost my height into the sand - quite a surprise when we went
down that afternoon.
I'm happy to report that my pile of rocks was
unaffected. It's getting to be quite a little monument at the far end of the
beach. Its now well over my height, and beginning to attract curious questions. When I started it I was careful not to strain myself ("nothing
larger than my head"). Now I try not to use anything smaller than my head -
because the kids like to climb it and then start throwing the rocks down.
Making them bigger discourages casual vandalism. It also gives me a solid
measure of progress. I can now carry lumps to the top of the pile that I literally couldn't even rock from side to side six months ago.
Reasons I've given for building it so far
include:
Exercise
To hide
the bodies
The stones
were looking messy - I'm tidying the beach
I like to
sort things by size
I dropped my
keys somewhere near here...
On my
birthday I spent a fair amount of time just quietly enjoying the fact
that this year I don't have the murky future of the transplant and attendant
unpleasantness hanging over me as I did last time.
This time round I feel that I'm coming
towards the end of my spiral staircase. I'm not there yet - but the light is changing, I can see further, the path is getting
smoother, with fewer rocks to trip over, and
generally I'm feeling pretty good.
In fact, to complete the lyric I quoted at the beginning of this post:I saw the Doc again last week. He's given me a date for removal of the Hickman line (again) and we're talking about returning to work - so things are looking good on that front too.
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