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Tuesday, October 6
Give me 5!
by
Malcolm!
on Tue 06 Oct 2009 02:24 PM HKT
Yesterday I did my
first radio interview!
HK's Radio 3 has a
Desert Island Disks type program called Give
Me Five that goes out on Sunday mornings and for some reason the
producer asked me to be a guest.
Shy and retiring
soul that I am I'd said "Yes please" and mentally started looking for the songs
I'd take with me before stopping to think about why he
thought I might be interesting enough to appear.
I know that
I think I'm interesting and worth talking to/about but
I have noticed that not everyone shares that opinion... So I asked him. It seems that
these days the parts of my life most likely to interest strangers are the rock
balances that I leave around the place and the fact that I'm willing to talk
about having had cancer. I'm happy enough with that. It's certainly a great
improvement on the days when my life expectancy and the fact that I looked like Fester Addams seemed to be at the top of the list - even though people
were reluctant to come right out and say so.
The most interesting
part for me was the process of actually choosing 5 tracks to play. The
program description asks guests to pick "pieces of music that that have
impacted their lives".
<digress>Hmmm. "Impacted". Visions of wisdom teeth and
meteorite craters come to mind, but I know what they mean.</digress>
I thought and chose
and listened and changed and and got the list down to a dozen or so that I couldn't leave out.
Then I hit the music playlist on our PC called 'Favourites - not heard recently' and came up
with another dozen songs... And so it went on.
In the end I picked
songs that reminded me of chunks of my life and the music I was playing then rather than my all time favourites.. If
you're interested you can hear them from here or perhaps here. If you
want to hear the show itself you can listen to RTHK 3 at 8.30 on Sunday October
11th - or wait for a day or to after that and then visit the Give Me Five link I
put at the start of this post and play it from the archive.
Sunday, May 4
Readjusting the mindset...
by
Malcolm!
on Sun 04 May 2008 02:11 PM HKT
Nothing major has
happened physically in the past week - but I've been making a few subtle
adjustments mentally.
A couple of odd
things from my conversation with Darren a couple of weeks ago stuck in my
mind. He said that still when he presses a lift button in a public place
he'll use a knuckle or a pen rather than a finger tip. Pushing open a door
he'll press a place above or below the 'sweet spot' where 90% of people
push. I understand that - I do similar things. Habits like that reduce
the chances of picking up a random infection, and every little is worth
while.
But he's six years
post-transplant, while I'm just over 6 months - why is he still
worried?
Towards the end of
last year when I first got home after the transplant and weeks in the
isolation room I was hyper-aware of bacteria, viruses, and potential contact
with them. If I touched a railing or door handle in public at
times my awareness of it was almost like a big red buzzing cartoon sign
("unclean, unclean") - until I could do the ritual handwash, or wipe with an
alcohol swab. But that mindset faded over the months as I grew stronger
and found I can function without picking up every bug that passes me on the
breeze.
Because I've had what the
doctors call an 'uneventful course' in the months since September I had fallen
into thinking of the leukaemia as something rather like a bad 'flu, or a broken
leg. Sure it was serious, but I've had a mental image of a time in the
future when I would be fully recovered. Like a broken limb, or having your
tonsils out, it would be done, dusted and completely in the past.
Since that afternoon
with Darren I've had time to reassess and remember what I read and learned when
I was first finding out about transplants. The effects are permanent (thank
goodness :) but so are some of the side effects. My immune system will never be
100% of what it was. My sense of taste won't be as subtle. My teeth will
be more brittle. My risks of other sorts of cancer are raised, etc., etc.
I need to build the
habits that will allow me to live comfortably with this new reality. My body
will never be something I can just rely on to the same extent as I did in the
past (I suppose that's true for all of us as we get older, but in my case it's a
little more solid, a little more sudden...)
So over the past
weeks I've started paying more conscious attention to how I interact with the
the world again. Walking to a ferry I note people who cough or sneeze on
the path or in the queue, and I'll then consciously put distance between us when
I pick a seat. I'll still buy a coffee - but if the milk's been refills in the
same jug since this morning, I'll have it black thanks, or, better still, I'll change
my mind and have a bottle of water.
It's not the near
paranoia I had when I first came home, but I'm working on a heightened sense of
awareness of my surroundings. It may not actually save my life, or
keep me out of hospital, but it can't hurt.
Wednesday, April 9
Nerves.
by
Malcolm!
on Wed 09 Apr 2008 02:12 AM HKT
Strangely enough I'm
getting nervous. Next week I go back to the hospital for a bone marrow
biopsy. That's not the part that makes me nervous - I've had close to a
dozen of them in the past 18 months and know what to expect. I even know
what result to expect - after all I've been having regular blood tests ever
since my transplant and all have been clear, so there's no reason to expect this
to be any different.
Except that it *is*
different. I've been reaching a point recently where I go for hours at a time
without thinking of leukaemia. There are multiple cues - pill time, shower
time, catching sight of my scalp in a mirror, the feel of my Hickman line
in its bag around my neck, or just someone else telling me how well I look.
Whatever the cause, I am reminded of my situation frequently throughout the
day. But - slowly it's been getting less intense. I had some hair
for long enough that people have mostly stopped commenting on it. I even
have conversations that end without either of us enquiring after the other's
health.
And now this biopsy. It's the
first one since I was discharged from hospital and I keep finding myself
imagining what I'll do if I get the "I'm sorry to tell you" phone call. I
don't expect to get it. I think I'm enough in tune with my body to have an
inkling if things were going wrong again - but imagination is what it is, and my
monkey mind has got hold of this idea and does not want to let
go.
Still it's an
opportunity to practice my meditation and positive thoughts. And talking
of positive - Darren - my buddy from Africa many years ago, and long term bone
marrow transplant survivor himself, is passing through HK on the day that I go
in for my tests. Passing through on his way to London for the Ironman
competition I should add.
Now *that* is
inspirational. Me - I'm happy to lift a couple of rocks but Darren - he does
world class triathlons! Of course, anyone strong, fit, and dedicated enough to
qualify for the Ironman is entitled to respect - but knowing that he's come out
the far side of leukaemia before doing it is a great marker to remember should I
ever be tempted to play the "I can't do that because..." sympathy
card.
Saturday, October 20
Day 31 - At last!
by
Malcolm!
on Sat 20 Oct 2007 05:03 PM HKT
We're preparing for
me to go home!
Over the past
few days my IV meds have gradually been replaced with pills, tablets and
capsules of various shapes, sizes, and colours. The changes have all gone well,
and so later today the last of them -
my steroid injections - will be changed over.
At the same
time my diet has moved a notch back towards normal. A couple of hours ago I had
my first 'solids' for what feels like a fortnight, though
it's probably been a little less. Two blobs of mashed potato and a
little gravy. I know it's not much - but it wasn't rice water, I
enjoyed it, and it's stayed down without effort - so I'm happy.
Now we
wait and see. As long as I handle the drug regime and the food well
over the next couple of days they plan to send me home during the early part of
next week. I've been here in the clink for 6 weeks now and its
enough. All my swellings have gone,
most of the rashes, my skin has stopped scaling and flaking off for the most
part though it's still ridiculously dry. My mouth is sensitive but not unduly
so, etc etc. For the first time in
weeks I feel well enough to think about looking after myself at home, and I want
to be with my ladies again.
Of course,
being at home won't be easy. I'm
still going to need to be in as complete
isolation as we can manage. I'm not allowed visitors for weeks, and I'll be
wearing N95 masks whenever I go out for 6 months. There will be drugs to
take and my Hickman line to care for, temperature checks, skincare, eye care,
hospital checkups, blood tests, etc,etc - and diet is going to be
an absolute nightmare for the first
three months at least.
But I'll be out of here and able to
say "that's the transplant done" which is
huge!.
Friday, October 5
Day 15 - Numbers
by
Malcolm!
on Fri 05 Oct 2007 04:53 PM HKT
Date
27 28 29
30 1 2
3 4
Day 7
8
9 10 11
12 13 14
ANC
Count 0.01 0.01 0.03 0.3 1.0 1.05 1.05 0.87
Numbers. Lots of
them. Assuming the formatting doesn't mess up when I post this they're in a nice
little table. The bottom line is the one to watch. ANC stands
for <mumble> Neutrophil Count.A= aggregate
perhaps.. Neutrophils are one of several types of
white blood cell - their job is to gobble bacteria and fungi. I need lots
of them.
The fact that those
numbers are non zero is a Good Thing! It means that some of the friendly orange
strangers have taken up abode in my marrow and are making white blood
cells! This isn't full engraftment - the docs will agree that has
happened when I have 3 days with out artificial help and a rising count over
1.0. So far the count has risen dramatically because they've been
taking lessons from old school Tour de France cyclists and giving me hormones to
up the neutrophil production. We stopped the booster jabs for a couple of
days and the count held and then dropped. No problem. Another
'vitamin' shot today and I'll be back over 1.0 again
tomorrow.
The level 1.0
(billion per litre) is a support level at which I can pretty much maintain my
body against normal levels of attack so they will maintain that until I can do
it myself.
In the meantime
progress - my mouth is getting better - I can breathe, sleep and swallow without
pain. we've stopped the morphine so I can pee without 'hesitancy' (a nice
medical term). The various rashes on arms, legs, chest, and back are
subsiding - but my ears are hot, scratchy, and sensitive - perhaps the first
signs of GVHD.
I'm still not
eating. I tried and managed a boiled egg this morning. at lunch I had a chicken
wing and half a tinned peach - but my stomach, er, rejected them an hour or too
later. And the diarrhoea is back.
So - some good
- some less pleasant. But its all change, and change is progress, and
progress is what I need. I'm still weak and tired - sleeping a lot and
keeping still most of the time I'm awake so as not to disturb my
bowels. I haven't checked my mail for days - so it's not just you I'm
ignoring - no one is getting replies :-)
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