Hong Kong Morris - Getting past Leukaemia
Experience is what you get when you didn't get what you wanted...
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Tuesday, October 6
View Article  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.
 
 
 
 
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Thursday, June 4
View Article  Yes, yes, I know.....
by Malcolm! on Thu 04 Jun 2009 02:46 PM HKT
I am still here, and doing things and progressing. 

I had some hard times physically for a few months at the end of 2008 up until around April of this year. There were interesting things going on (visitors, newspaper interviews...) but the trouble with my lungs meant that I was continually tired. After a shopping trip to the village all I wanted to do was sleep for a few hours, and a  day out in the big city wiped me out completely - even if i spent most of it sitting at a desk.

By the beginning of May I had stabilised enough to fly to the UK for a couple of  weeks for my mothers 70'th birthday party and to meet a whole crowd of relatives and friends that I hadn't seen in too many years. 

I was a little apprehensive before I left. I knew I'd spend time travelling around between HK, Aberdeen, London, Wells etc., but the plan was to sleep for most of the journeys. It was more the idea of dragging a case and chasing buses and the tubes that worried me. 

If I forget to move slowly and overdo things - it can be pretty unpleasant. I can't just slow down and pant a bit while I walk and my body sorts itself out. If I charge up a couple of flights of stairs at the speed I used to I get to a point where it hits me and I have to stop completely and do nothing but breathe for anything up to a couple of minutes.

Then of course the swine flu panic started. HK is very keyed up about that sort of thing after being at the centre of the SARS episode a few years back - so I had  that to think about instead....

In the end it turned out fine. I did get tired, and did sleep a lot, and did force myself to eat more than I really wanted. But I didn't lose any more weight, didn't collapse from exhaustion, and didn't catch any unpleasant bugs.

Everything went swimmingly. I spent time with my family, met up with several friends from decades past and  collected lots of hugs and happiness, which is just what the alternative medicinal practitioner ordered.

So now I'm back in Hong Kong, feeling better than I have been for months, and approaching where I was towards the end of last summer: I'm doing some part time work, feeling a little more in control of my life again, and looking to move on.

It's good to be back.
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Tuesday, January 6
View Article  Marking the midwinter solstice
by Malcolm! on Tue 06 Jan 2009 01:44 PM HKT
Time passes and the observations I use to remind myself that I am making progress become less frequent. In the first post transplant rush I didn't really need to mark anything. Rising blood cell counts, eating solid food, changing drug regimes, moving out of the transplant ward, a few hours without a drip plugged into my chest, even just counting the days - there were so many changes that I didn't really need to observe that I was getting better ("Couldn't get much worse" I hear Ringo singing in the background :)

Once I was out of the hospital and settling in at home again things slowed but there were still plenty of changes. Eating a whole meal, going out in public without a mask, picking Kira up without feeling dizzy, a week without a hospital visit, a month, then two without a blood transfusion. Whenever I felt weak or frustrated I had solid ways to mark and measure and remind myself of the progress I was making.  

Gradually the markers became less frequent, but they were still there. Having my Hickman catheter removed, being able to drink a glass of wine with Deb, feeling safe enough to leave HK and hospitals for a holiday in Thailand. Each of those was important to me, and by September I was feeling good, preparing to find work, starting an exercise regime and getting ready to move on again.

But then the GVHD flared up and over the past three months I've sometimes times felt that I've stopped, and even been losing ground.  I've had skin rashes, sore and gummy dry eyes, followed by arthritic joints, then incredibly sore and stiff muscles. Most recently the focus has moved to my lungs and I've become short of breath. I've had to give up my training sessions and make sure I give myself an extra few minutes for the walk to the ferry - because I know I can't run the last hundred metres if I'm late.  The first few symptoms each lasted some weeks - so I'm hopeful that my lungs will clear up too in due course. This is however 'chronic' GVHD - which means that I could be facing months or years of low level conflict between my two sets of DNA. I shall practice patience until I find out.

It's not all doom and gloom though. The Doc's have increased my drug levels and given me some new steroids to inhale which has helped a lot. After a couple of weekly trips I'm back to visiting the hospital every three weeks which means that they're not particularly worried.  This too will pass.

In the middle of all my self absorbed introspection we had Christmas.  Or Yule, Midwinter, Saturnalia, Sun Return, midwinter solstice, Modranacht, Alban Arthan - whatever you choose to call it.

For thousands of years people have celebrated the the shortest day and longest night of the year and have come up with many different reasons for doing so.  And this morning I realised that I have a special reason to be cheerful this particular mid winter. 

As you can see from the chart below I've passed the 50 percent line!  It's not a cheerful graph - showing the survival (or mortality) rate for adult bone marrow transplantees. But I'm still here, and still pretty healthy, and I'm off the steep scary part of the slope. 


Since I first found this picture my (probably irrational) feeling has been that if/when I got past the year/50% point without major problems I'd be if not home free, then at least on the  home straight.   

So here I am.  Getting better, the sun's shining, and it's a bright shiny new year, Hooray!

And for some photos - try this link
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Thursday, December 11
View Article  Momentum, and the lack thereof.
by Malcolm! on Thu 11 Dec 2008 07:03 PM HKT
ARRRRGHHHH!

I just spent 45 minutes writing a long and exquisitely crafted post and #$%#$^%#$^ firefox hung on me when I tried to insert a picture.

I want to cry and bang my head on the keyboard.  Or better still bang the damned computers head on the keyboard.

eccch.

But you can have the picture anyway  'cause it's fun.

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Sunday, October 12
View Article  Still active, just not blogging so much
by Malcolm! on Sun 12 Oct 2008 03:17 PM HKT
It's been far too long since I was here. I had a bit of a bad month in August/Sept, and since then I've been recovering and doing other things.  Blogging is subject to some parallel of Newtons laws of motion.  If you're blogging regularly it's easy to continue, your mind turns to it, topics suggest themselves, and you find the time.  Once your momentum falls to zero you tend to remain in that state and will rest there unless acted upon by an outside force.
 
Well today I was stumbled upon by an unexpected outside source.  Herman at lamma.com.hk was obviously having a quiet day, and decided to devote his front page to the disappearance of my rock pile, and it's replacements.  This was unexpected, and saves me the trouble of writing about it myself :) - and (in the words of Forrest Gump) that's all I have to say about that. Though I will add a picture:
When I said above that I had a bad month it wasn't too serious.  Because things had been going smoothly they cut my drugs perhaps a little more than was wise, and as a result I got my first real symptoms of GVHD.  Scabby rashes on my arms and neck - a little like severe eczema, though I'm happy to say without too much itching.  Swollen hands, stiffness, achy joints and muscles, problems sleeping, and general malaise and tiredness.  Eventually I realised the symptoms weren't going to subside by themselves (as they have before) and went back to the hospital, where they jumped my immunosuppressant dosages back up to where they were a few months ago, and add some steroids to the mix. 
 
That was nearly 3 weeks ago.  The steroids are doing their job, and the aches have mostly gone. I've adjusted the times that I take the pills, which is helping with my sleep patterns, and daily gentle stretching and walking is helping me get some level of suppleness back.  It's still taking me a few minutes of very gentle pushing to touch my toes etc, but that's a 15cm improvement over where I was last month!   The fact that I've actually got the energy to take some exercise at all is enough to make me happy.
 
And there have been other interesting things happening! I rescued a snake that was trapped on a pot plant on the main path. The Doc's have given me the all clear to take on a little more non-strenuous part time work as I feel up to it.  I've started seeing a life-coach as a way of re-assessing where I am, and how I want to spend the next few years of my life.  My flat in the UK finally sold, just before the financial crisis really began to bite!!!!!  I've paid off all my debt's (bar one, and that's coming).  I'm finally a year post transplant (Sept 19th if any of you were counting).  And lots more that escape me at the moment.
 
Now all I need is the momentum to continue posting.  So if you read this and haven't emailed me for a while, or realise I haven't been in touch with you then move yourself too. Drop me a note or give me a call.  My energy levels fluctuate - but I'm building myself a routine that includes booking time to reply to all my (few) emails on a daily basis - so you will get a reply!
 
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