Hong Kong Morris - Getting past Leukaemia
Experience is what you get when you didn't get what you wanted...
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Saturday, October 27
View Article  Day 3x - Thank you all
by Malcolm! on Sat 27 Oct 2007 07:54 PM HKT
I composed this post while I was preparing to leave the hospital this time last week.  The idea was to fire it off as I left and have it automagically appear on the site as Deb and I made our way back to Lamma.  That of course didn't happen, but the sentiments remain.
 
I've had some tough moments since I came in to hospital on September 7th.  But that part of my treatment is over and I'm on my way home!
 
My time here would have been much harder for me to deal with in a good way without the support I've received, from more sources than I can begin to name.  So, for what's been given to me, Deb and Kira while I've been in here, for the
 
love, prayers, emails, chi balls, blue medicine Buddhas, text messages, phone calls, reiki, black chicken feathers, voice messages, hugs, jokes, visualisations, riddles, news, massage, smiles, companionship, happy thoughts, videos, incense, hand squeezes, blog comments, lessons in patience and perseverance, lock fitting, and even the oversized email attachments (!),
 
friends, family, and strangers,
 
I thank you.
 
 
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View Article  Timing.
by Malcolm! on Sat 27 Oct 2007 12:19 PM HKT
Finally I've been able to change the bandwidth allocation on my account. It's been about an hour.  Lets see how long before the changes register and
I come back on line.  Let's see if anyone is still checking in on the site now it's been down for a week.  I had so much I wanted to say as I was leaving hospital and arriving home and it's all passed it's magic moment now. :(

but I'm a garrulous soul and I'm sure I'll find something to fill the spaces. 
thank you for all the messages letting me know the site was down and for for the expressions of concern.

Everything is OK - I'm back at home and have been for two or three days.  Settling in and sleeping a lot.

More news soon.
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Saturday, October 20
View Article  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!.
 
 
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Wednesday, October 17
View Article  Day 28 - when is a stomach like a kitten?
by Malcolm! on Wed 17 Oct 2007 02:04 PM HKT
No big changes today.  Sleep was nowhere on the horizon last night so I took another sleeping pill. While I did get a few hours in it was nothing like the oblivion of the night before . I shall probably give it a miss tonight.
 
Rice Water. Well to some it may be strangely comforting. to me it tastes like gruel. I had a little for breakfast - perhaps 20 spoons full and that went well enough though I had to stop suddenly when the nausea set in.  Then the same again for lunch. I've learned over the past weeks that to have any chance of keeping food inside me I need to eat in small amounts and pause often. In this case a few spoons and then pause for a minute. Few spoons, pause for a minute.  After the first little bit my stomach started its usual growl and twitch, so I stopped.  Then after a little while the feeling changed and I realised that perhaps it wasn't the nausea setting in again.  This could almost be that other thing. What do you call it?   Hunger?  
 
Think of my stomach as a tiny baby kitten.  For the past weeks, since chemo, feeding has been like trying to give kitty medicine in a syringe. It's hissing, spitting, claws are out, head's twisting, jaws clamped shut. It does not want that stuff inside and is using the strength of every sinew in it's body to keep it out. Sometimes you can trick it - but mostly kitty wins.
 
Then today, just for a moment my stomach changed. Have you ever fed a feral cat, or a really hungry domestic one?  They have an ability to make the most incredibly fearsome growls and threats while simultaneously guarding their food and trying to inhale it as fast as possible.  I think what I got was a moment of that. Suddenly I was getting real primitive signals: Sniff? !! Food? I remember that! More! More of that! Now!!!  
 
Maybe. At least I've had a dozen or two spoons at lunch and all remains quiet in the nether regions.  I'm not going to push it - just be happy with a little progress. 
 
Tomorrow the docs plan to reduce my steroids and immunosuppressants and we'll see whether the rashes and diarrhoea come rushing back. that's the next pig step to getting me out of here....
 
 
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Tuesday, October 16
View Article  Day 26 - Diet, Side effects and sleep
by Malcolm! on Tue 16 Oct 2007 01:07 PM HKT
"Nil by Mouth",  "Sips of  Water",  "Clear Fluids", 
 
You can measure my progress by the the change of signs at the head of my bed.  By his evening, if I'm really lucky, (no vomiting, normal bowels, etc) then I get to 'Rice water'.  Rice water is a sort of gruel that HK hospitals dole out to people who have not been eating or have sensitive gastric linings.  Very simple, nourishing, and surprisingly comforting I'm told. Can't wait to find out he says, with only a mild hint of sarcasm.  What I have been craving for days now is marmite toast. Though I'd take blueberry jam.  Hmm food fantasies. Let's not go there.
 
Hunger is a good thing.  It means that the magic milkshake IV bag that's been dripping into me for the past 20 hours is empty so I can be unplugged! Freedom! The few hours a day I get without any sort of IV drip plugged in are  special.  Just being able to walk around the bed or go to the bathroom without having to drag the IV stand along is like having a nagging headache for hours and then realising that it's stopped.  It wasn't so bad really - but life is much more pleasant without it.
 
But hey - look at it on the general scale of unpleasantness. If all I'm complaining about is having to drag a stand around then things have to be better! A couple of weeks ago the IV stand didn't even register compared to the state of my mouth and my general malaise. And a couple of weeks before that I was so far out on the chemo scale that I was hardly aware of it at all.
Time.  Small Steps. Progress.
 
As a side note - I think these IV stands must be related to supermarket shopping carts, and airport luggage trolleys. They all have one dodgy wheel that makes them spin off in odd directions. But I digress.
 
Tomorrow they will begin to reduce my steroids and immunosuppressants gradually and see whether the rashes etc. return. More on that as it happens.
 
-----
 
Last night I had my first night of unbroken sleep in weeks. I think it was probably wonderful but I don't remember. I was completely blacked out for 8 hours.  A side effect of one of the drugs I'm on is that it raises my blood pressure - so they've been giving me beta-blockers to lower it again. A side effect of the beta-blockers is that they give me vivid dreams that keep waking me up.  Another drug with a side effect is the steroids - these make it really hard to sleep - from the notes I took  on Sunday night I didn't manage more than 30 minutes sleep at any point through the night.
 
So yesterday they shifted my evening injection and combined it with the morning one to give me a chance to clear my body by evening, and then, for the first time in my life that I can remember, I requested a sleeping pill. 
 
I don't know why - but I have never liked the idea of taking pills to help me sleep. I dont usually have problems sleeping - but if I do I'll happily listen to relaxation tapes, drink herb teas, sniff oils, do breathing exercises, play calming music, meditate, avoid stimulants, whatever it takes. I just dont take pills to make me sleep.
 
But yesterday I did - (hey I'm in hospital, taking a dozen other meds a day - it's hardly likely to be habit forming...) and boy did it work. I was so far gone that for the first time in 5 weeks I dont even remember the 4.00 am fairy coming in to take my blood pressure and temperature.  I'm sure she did come in but my consciousness was somewhere else far far away....... 
  
Useful. An interesting experience, but not one for every night.  Unless the side-effect monster has been hiding under the bed for a few days...
 
 
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