Hong Kong Morris - Getting past Leukaemia

Give me 5!

Malcolm! — Tue, 06 Oct 2009 14:24:19 +0800

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.

Yes, yes, I know.....

Malcolm! — Thu, 04 Jun 2009 14:46:58 +0800

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.

Marking the midwinter solstice

Malcolm! — Tue, 06 Jan 2009 13:44:22 +0800

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

Momentum, and the lack thereof.

Malcolm! — Thu, 11 Dec 2008 19:03:00 +0800

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.

Still active, just not blogging so much

Malcolm! — Sun, 12 Oct 2008 15:17:12 +0800

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!

Taking time for reflection...

Malcolm! — Sat, 19 Jul 2008 16:53:58 +0800

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.

I'm Freeeeeeeeeeeeee!!!!

Malcolm! — Sun, 13 Jul 2008 19:24:25 +0800

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.

A link, and a story!!

Malcolm! — Sun, 29 Jun 2008 15:45:59 +0800

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.

Just for a change....

Malcolm! — Sat, 21 Jun 2008 12:18:40 +0800

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....

I'm half way to 90!

Malcolm! — Sun, 15 Jun 2008 22:59:54 +0800

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 should be depressed,
My life's a mess
But I'm having a good time...

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.

Oh yes - about the leukaemia...

Malcolm! — Sun, 01 Jun 2008 15:46:33 +0800

Two posts in one day! You don't know you're born!

HA! Two of my last four posts have been about the blog, admin stuff, rather than about my progress through the recovery stages of my marrow transplant.

That's good - it suggests to me that I am actually 'getting past leukaemia' as the page title says. Hooray! (or Hurrah! or even Huzzah! if you're feeling antiquarian).

Its is still "getting past" though, I'm not there yet. As I mentioned a week or two ago:

"...the reason I was in last week was that I have a rash around my belly and back. Could be heat rash, could be mild GVHD. Though GVHD is usually on face, neck, palms, soles, arms - almost anywhere other than the trunk - so we're not sure."

That was during my trip to hospital on the 15th. The doctor added a small dose of steroids to my daily drug regimen and we let those work for a couple of weeks. On my follow up visit last Thursday (May 29th) I saw a different doctor. This one took the rash (!) step of assuming I have some interest in the treatment I'm receiving and volunteered some information!

He looked at some blood chemistry results from when the rash first appeared 2 - 3 weeks ago and noted some slight abnormality in my liver function from around the same time. The organs most commonly affected by GVHD are the the liver, skin, and gut - so this is confirmation that the rash is mild GVHD rather than heat rash, or soap allergy or whatever.

This is good - mild GVHD means that the new white cells will be zapping any of my old ones that might still be lurking about - thus eliminating (we hope) the chance of the leukaemia returning (again). It's also bad - if I'm getting GVHD now there's a chance that it will hang around for the long term - though whether that means for a few months or permanently we can't say yet.

He doubled the steroid dose that I'm taking to 20mg daily - though as he pointed out it's still a tiny dose - less than what they prescribe to asthma patients.

In fact he was talking out loud as he decided what to do - he could have upped the dose of one of the immunosuppressants that I'm taking; "But we're hoping to have stopped that one completely by the time you're a year post-transplant so increasing the dose now would be a backward step. And the steroids are much faster acting..." More information - a target date for stopping one of my drugs! I shall make a point of asking the powers that be (ie the nurses) to make sure I keep seeing this Dr. Patients-are-people-too! in future rather than my usual Dr Need-to-know-you-don't!

So here I am. Externally I'm well - thin, fit looking, mostly smiling, beard coming back, scalp not so visible not so shiny....

Internally - my guts and digestion are pretty much normal. My blood is getting there: Red cell counts are almost back to normal, platelets are normal, white cell counts rising happily. My Neutrophil counts are still a little low and more variable than we'd like - but not a cause for worry yet.

This news about the liver function concerns me a little - but the doctor didn't seem to think it was a big deal so I'm not worrying unduly. And of course I didn't bother to ask whether I'm allowed my celebratory glass of wine.....

A new look for the blog: http://blog.morris.hk

Malcolm! — Sun, 01 Jun 2008 13:57:51 +0800

After a couple of years of posting to this blog mainly for my own pleasure I actually began to gather a readership back in 2006. Not many of you, but hey - quality over quantity :)

Of course, as we all know, you only started reading this site because I was ill - but if that what it takes.....

Now you know I'm here, and you've bookmarked the URL you're hooked. Maybe. Especially if you've signed up for the notifications. So of course I'm going to change everything.

The blog has been hosted on Tucows Blogware server, and while it's usually up, the pages are sloooow to load and behind the scenes the system is clunky and not particularly flexible which makes customizing things hard work. After some thought, research, and a few technical gremlins I'm ready to move to a new server! I'll be using Wordpress for the new version. That will mean little to most of you, but to me it means a solid platform that I'll be able to tweak, fiddle and customize to my heart's content.

The new site is taking shape at http://blog.morris.hk. Although there's not much there at the moment I hope to be able to transfer all the existing content from here in the next few days. Though from what I've read, I can expect to hit a few hurdles on the way so I don't know when it will actually be ready.

But some day soon I'll change a few settings - and the next time you aim for www.morris.hk you'll automagically end up at the new place. The internet's clever that way.

It's fun to be doing something like this again.

Rolling back the years.....

Malcolm! — Thu, 22 May 2008 19:11:49 +0800

Last night as we were heading to bed Deb commented that I've lost weight - my ribs are visible! So when I went to the clinic today to have my tube flushed I weighed myself.

For some reason I looked at the scale in pounds, rather than kilos: 160lb - which I automatically converted to stones (showing my age a little) - 11 and a half stone. Wow. That's exactly the weight I was when I left school 27 years ago. For the metric minded that's about 72.5 Kilos. It sounds light to me but the BMI calculator says its smack in the middle of the correct range so I'm not going to argue. Though I'll start to get concerned if I slim down much more. And for the record, my blood pressure is fine too (110/60 or thereabouts :-)

I was 83kg when I had my relapse in July, and almost exactly exactly the same weight when I came out of hospital in October which is pretty surprising. Most people waste away over the course of a transplant but I guess the intravenous stuff they were feeding me just stuck.

I've been shedding steadily over the past months as I stopped taking the steroids, lost water, and started exercise again. I always lose weight when I spend a lot of time at home, or on my own because I tend to eat when I'm hungry, rather than just because the clock says it's lunchtime. Stopping alcohol, junk food, sweet snacks, etc has probably helped too.

Interestingly (or not) - I keep forgetting to ask whether I'm allowed to drink alcohol. Several hospital visits ago the doctor lifted my dietary restrictions, and each time I return I fully intend to ask him whether I'm allowed a celebratory beer, or and occasional healthy glass of red wine. But by the time I get in for my consultation my mind is always full of other thoughts and I forget to raise the question.

On my visit last week the topic I was burning to raise was the result of my bone marrow biopsy. If you remember that was the 6 month check to see whether any white blood cells with my DNA were floating around, or whether they were 100% donor. This is a key point because anything less than 100% would mean there is a chance of the leukaemia coming back.

And his response? "The laboratory haven't contacted us yet, so that probably means you're OK. They only call us when there's a problem or bad news...."

After a little further inquiry it appears that these genetic tests are funded by public donation rather than by the government so they dont have $$$ to waste on admin. I choke. The quality of the medical care here is great but concepts like empathy, holistic care, treating the whole man, seem to have passed them by. The idea that I might have been worried or anticipating the results seemed completely novel to him... Breathe. pause . Breathe. Smile.

Oh - and the reason I was in last week was that I have a rash around my belly and back. Could be heat rash, could be mild GVHD. Though GVHD is usually on face, neck, palms, soles, arms - almost anywhere other than the trunk - so we're not sure. But to be safe they have upped the level of one of the drugs I'm taking, and put me on a very low dose of steroids again (2 pills a day as opposed to the 12 I was on when I left hospital). I'm almost excited by the change - it reminds me that I really have something to be careful about after a couple of months where I've been getting careless.

More next week when I've been back for my follow up.

Toot!

Admin. Because I care about my readers.

Malcolm! — Mon, 19 May 2008 14:34:25 +0800

Some of you have noticed the "Change Detection" panel at the top-right of this page. A few of you have gone in and signed up to be notified when I post something new. And a couple of you have pointed out that you receive notifications when nothing appears to have changed. Sorry about that.

If you're not signed up to receive notifications, and have no plan to do so then there's nothing much of interest here for you today. Sorry about that too.

For those of you who *are* interested: The system was reacting to *any* change - so if I went in to correct a hastily misplaced apostrophe, or add a link to my blogroll, ChangeDetection would fire out its messages. It also fires off occasionally for reasons that (currently) elude me - I'm working on it.

I've modified the code so it should now only react to changes made in the centre column. Stuff in the side panels and the header should be ignored.

If you're still getting notified when I haven't posted anything new and if it bugs you, there are a couple of things that you can do to help yourself. You'll need to go to www.changedetection.com and log in with the email address and password you used to register.

    Click the link that says "you are monitoring 1 pages for changes"
    Click the check-box beside the "Hong Kong Morris" entry, and then the Edit button.
    Check the box marked "only send alert if sizable change", and then the Update button

The other thing you can do is to check the page you are monitoring is http://www.morris.hk only. Anything with a
/blog or /archive... or other bits at the end of the URL "may give results that are undefined" as they say. However I don't think you can edit the page address that is monitored. You have to delete the current one and create a new one. Sorry about that. :)

Readjusting the mindset...

Malcolm! — Sun, 04 May 2008 14:11:20 +0800

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.

Still Tubed.....

Malcolm! — Fri, 25 Apr 2008 13:58:07 +0800

Unfortunately I am still tubed.

I had my bone marrow Biopsy last week - and the initial results are fine - no sign of the leukaemia returning - which is as expected, but still nice to hear.

They want to do closer examination of the sample and check my "degree of chimerism".... In non-med-speak that means they look at the DNA in a selection of the white cells to see if it is all from my donor - or whether any of them still have my original DNA.

If there is a mix it would be bad news - it would mean there are still some of my old marrow stem cells functioning - meaning there's still potential for them to go wrong and bring back the leukaemia. It seems there is only one technician who can do those tests, she's recently back from wedding leave, with a backlog - so it will be 2-3 weeks at least before we get those results... Again - I will practice waiting.

As a side note - in medicine a Chimera is "a person composed of two genetically distinct types of cells". In Greek mythology it's "a fire-breathing she-monster with a lion's head and a goat's body and a serpent's tail". Sounds a lot more interesting, but getting blood transfusions would be a bitch.

And the Hickman line? It seems they agreed to remove it because I've been bugging the doctor about it. But talking to the nurses (who are the ones at the front lines) it turns out they would all be much happier if I kept it in.

For transplantees with unrelated donors the line usually stays in usually in for at least a year post transplant. I could have it removed and then re-inserted if needed at some later point - but that would be my 3rd one - and each scar on the vein weakens the the wall a bit more. They could put one in on the left side but that is harder due to the different arrangement of veins and arteries etc.

Also my neutrophil counts were lower again yesterday. The levels fluctuate Normal range is 4 - 6ish and they dont like to cut you open at all if you're below 2.. Mine were at 2 and rising when the doctor agreed I could have the tube out, but the last two counts were 1.5 and 1.3. They want to delay definitely till I'm back and stable over 2, and "discuss it again then"'. They want me to just let it go until they're ready to take it out on their own schedule, and I know that's the sensible thing to do.

It's a bit of a downer, though Kira is more upset than I am - we'd been looking forward to going swimming again But it's also a reminder that just because things have been going really smoothly so far I dont have any assurance that they will continue to do so - and I do still need to be careful.

"first thing you learn is that you always gotta wait"

I am not nervous.

Malcolm! — Wed, 16 Apr 2008 22:24:53 +0800

Really.

I've given up on being nervous, but I am definitely having a hard time with impatience.

I want my biopsy. I want the results. I want the Hickman line out of my chest, and the stitches can go too. Then I want to swim, shower without a plastic bag taped to my chest, faceplant on the beach without worrying about sand in the wound and perhaps even enjoy a beer.

And for dessert please can I have a reduced load of immunosuppressants and the rest of my life back?

Nerves.

Malcolm! — Wed, 09 Apr 2008 02:12:56 +0800

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.

Good days bad days

Malcolm! — Mon, 31 Mar 2008 23:28:47 +0800

It's been a while since I was here. In fact one person whom I bumped into told me he'd been worried that 'the worst had happened' and so had hesitated to email or call just in case.

Let me put paid to that sort of rumour with the words of Mark Twain: reports of my death have been greatly exaggerated......

In fact I had a good chat with my doctor on my last hospital visit (on Thursday). For those who've been counting - I'm now 6 months post transplant!

That's a major threshold and various things change. Diet - "no restrictions, but be sensible - avoid the sushi". I'm scheduled for another bone marrow biopsy in 3 weeks. If as expected, everything is normal, I can have the Hickman line out if my chest the following week!!! That, for me, probably the biggest remaining step on the path back to normality.

My immune system is still suppressed by the meds - but we reduce the dosage a little almost every month. And its working as expected - my red cells and haemoglobin levels are rising back towards normal levels. I haven't had a blood transfusion for a couple of months now and am hopeful that they are a thing of the past for me now. Certainly I'm feeling less tired and more able to carry on a relatively normal level of activity without needing to punctuate it with frequent naps. They still dont want me to spend lots of time in centrally ventilated offices because of the risks of infection - but I am planning to start doing some from home.

On the bad side - I learned today that another buyer for my flat has dropped out - and I'm back where I was 6 months ago. Except that the UK housing market appears to be tanking and I have no tenant in the flat to pay the mortgage.

But as Deb pointed out - imagine how I'd be feeling if the news had been the other way round - say I'd sold the flat, and the leukaemia had come back? It's all about remembering what's really important...

Back to hospital...

Malcolm! — Fri, 11 Jan 2008 13:44:21 +0800

I'm heading back to hospital again. Just an overnight stay for another blood transfusion. It seems that the surviving cells from my old immune system ate still around, and still working - and part of what they're doing is fighting the friendly orange strangers with purple hats!

My platelets (for blood clotting etc) are back in normal range, the counts for the various white cells (for fighting infections etc) are heading back to normal levels - and certainly out of the dangerous zones. But my red cells are taking a long time to get back to normal. According to the doctors I will probably continue to need monthly transfusions for the next year. While I was aware of this in the back of my mind I'd been discounting it. Everything else has been going so well that I'd subconsciously assumed that I'd sail through this part of the recovery on fast-forward as well.

Ah well.

Back on line on Monday. and at least I'll be out on Sunday for Kira's birthday party. 4017 days old and counting....

Day 103 - Back from the wilderness

Malcolm! — Mon, 31 Dec 2007 00:01:40 +0800

It wasn't intentional but I note it's been 40 days (and 40 nights) since my last post. No particular reason behind the symbolic number but I'm glad I caught it.

There's been lots going on, but not a lot has happened since I last posted. I went through a very tired phase where I was waking at ten or so, and sleeping for several hours after a walk to the village or to the beach, and not summoning up energy to do much in between. I've had another couple of days in hospital, and am still taking a couple of types of anti- biotics though they dont seem to be having much effect.

But my first three months are over - without serious incident. The 100 days symbolic barrier has passed too. So should I get any GVHD from now on it will be classed as Chronic rather than Acute. Still the same causes and effects - but now the attitude would be more 'you may have to learn to live with this' than 'Hmmm - let's see how we can get rid of this' . But on the whole I'm not expecting much.

I'm not much of a fan of new year's resolutions (If a change needs to be made then make it. Why wait till mid winter when motivation is at it's lowest ebb? ). But now I'm here I can at least resolve not to take any more 40 day breaks from posting. I shall make more of an effort to post frequent rather than long messages. And now that I have a digital camera (Thank s to my lovely Christmas elves!) I can always find something to put up.

Sorry for being out of touch, and thanks for all the emails and enquiries after my health. But now it's midnight. 23:59 to 2008. And counting.

Day 63 - Back at home

Malcolm! — Tue, 20 Nov 2007 16:43:53 +0800

I'm back at home :), and in fact I have been since Saturday. I was only in the hospital for two nights - my temperature returned to normal without the need for antibiotics (Hurrah for my new immune system and my friendly new T-cells!)

And Re: my comments about Starbucks - I wasn't having a coffee - off limits for the next few months - just taking advantage of their internet terminals...

A couple of you have asked for more details of why I needed to go in:

As part of my normal routine I check my temperature twice daily - and more often if it is higher than normal or I feel as if it might be. Normal is between around 36.5 to 37.5. If I go over 38.0 I need to call in to the BMT unit. They tell me to check myself hourly and come to the hospital if it continues to rise.

On Thursday afternoon I hit 38.0, then up to 38.2, 38.3. I lay and rested for a couple of hours but that didn't bring it down (though I felt OK). Evening ferries off Lamma are 9.30, 10.30, and the last one is 11.30pm. Once I'd hit 38.4 and made the decision to go in it made sense to take the first available ferry - though it was in fact the 10.30 rather than the 9.30 as I said in my previous post.

The standard practice for anyone admitted via the A&E process is to keep them in for a minimum of 24 hours which in my case meant two nights in a vastly overcrowded ward. My temp peaked at 38.6 around 3am - but had subsided to under 38 by the middle of Friday morning. Then they released me, without antibiotics (hooray again) on Saturday morning.

In general my temp has been above it's normal range for the past 2 weeks or so - hovering between 37.0 and 37.8 - which is probably my immune system kicking in and reacting to everything it finds around it (i.e. me...). That in turn is probably due to the lessening doses of steroids I'm taking.

My various cell counts have also been dropping slowly but surely over the past couple of weeks which concerned me if not the docs - but Monday's blood test showed my neutrophils back from 1.6 to 1.8 (normal 3 - 10, danger level below 1.0)

So things are back to normal, though my throat is still scratchy, and my first scare proved to be less of a scare than it might have been

Day 56? - back in hospital (just for a day or two)

Malcolm! — Fri, 16 Nov 2007 22:59:00 +0800

The hospital may be overcrowded - but they have a Starbucks just inside the main entrance - with public internet terminals And they're all free too. That may have something to do with the fact that they've also got bl$%^#y Dean Martin singing Christmas carols on the muzak track.....

Yesterday evening my temperature started to rise. and reached 38.0 degrees by about 7.30 pm. that's the warning level at which I have to call the hospital and prepare to go in. I did all the right things - rested, took a nap, drank cooling drinks - but it continued up and by 9.45 was at 38.4. Time to go - so I was on a 9.30 ferry to Central, andat the hospital by 10.30. My temp was up to about 38.6 by 2 am - but back to normal by this morning. But - once admitted they dont like to let you out within 24 hours - so I'm in for a second night - but assuming nothing untoward happens I should be out tomorrow. And if the temp returns it's another course of antibiotics for me....

But now I need to go and sneak back into the ward before they notice that I've absconded....

Day 50 - So today I built a pile of rocks.

Malcolm! — Thu, 08 Nov 2007 15:02:37 +0800

Today is day 50 - half way through the 'critical' first hundred days and so far everything seems hunky dory.

I'm gradually reducing my daily dose of steroids and have not yet had any sign of GVHD. Of course while this is nice, in the long term a little GVHD would actually be a good thing because of the Graft Vs Leukaemia effect.

Like many things at the moment - there seems to be no clear answer available - I just have to wait and see. Deal with the things I can deal with, accept the things that are beyond my control, and look for the wisdom to know the difference. And where does that advice come from? I'm sure I knew once.

That's the health side of things. But the rest of the physical side is less pleasing. I've never been a fitness fanatic. Organised exercise has never appealed to me - I think the last time I used a gym was probably while I was at school... But I have always kept reasonably healthy - I swim (or swam...), walk, cycle, take the stairs, play on the beach, etc and that's worked for me. My body has always responded when I've needed it and done what I've asked.

Since coming out of hospital I've been weak. Squat in front of the fridge - and I need a conscious effort to stand and balance when I want to get up. Stand up too fast and I get that little low blood pressure dizzy moment. Carry a 4 litre bottle of water up two floors and I need to pause for breath at the top... Being this way just doesn't feel like me.

So today I built a pile of rocks.

I went for a walk to the rocky end of the beach, sat down, and tossed a rock. Then another. And another. And so on. Then I started bending down and moving the bigger ones and clearing a space which I grew into a path. By the time I left I had a pile about two metres square with a mostly cleared path around (or asquare) it. I wasn't silly, I didn't strain myself, didn't move anything much bigger than my head. But I shifted a lot of rocks, pebbles, stones and frustration. I may be weak, and I may tire easily, but I don't have to be a lump. I can exercise my body and I can and will grow stronger.

I'll see how I feel tomorrow too. If I'm stiff or really tired I'll rest. But if not, I'm going back to shift more rocks.

Day 46 - Settling in at home

Malcolm! — Mon, 05 Nov 2007 17:01:58 +0800

I've been home for ten days or so now and I'm beginning to build myself a routine. There's not a lot to it : pills, food, shower, walks. And of course there's preparation and cleanup for each of them which can often take a while - but it's a start.

I'm on T-Day+46. The first 100 days post transplant are the critical ones. During these 3 months the transplanted cells are bedding in, and I'm taking various different immunosuppressants. These are the same drugs that someone with a heart or kidney transplant would take. The big difference is that I am getting smaller doses than they would and my doses will reduce over time - whereas someone with a kidney transplant would be taking them for life.

And after the 100 days they still reckon a minimum of six months, and more likely the best part of a year before I'm strong and well enough to consider work. But hey - I'm home, I'm uneventful, I'm recovering, and I'll settle for that for right now.

The docs have stressed that I should 'expect problems' between here and Christmas. As we reduce my drug load the transplanted immune system will gradually become more active. And at some point the graft is likely to decide there's a part of me it doesn't like and I have to be ready for that. So if I suddenly post from back inside the hospital I'm hoping it can be considered part of the predicted course, rather than an emergency... We shall see.

The first day or two at home were odd, and not all in a pleasant way. My stomach seemed to have shrunk to the size of a golf ball - and a mouthful or two of anything was enough to give me indigestion for hours. Having real food again after months of living on hospital gunk and the intravenous milkshake mix also shocked my insides a little. That seems mostly to have passed now, and I'm beginning to feel that I can eat almost normally again. Of course I have to be very careful about what I'm eating, and how it's prepared, but being able to eat a plateful of something without having to think "that's ten spoonfuls, let's just pause for two minutes and see how my stomach reacts" is a great improvement. And thank goodness my sense of taste is slowly returning. Texture can only take you so far.

I'm aware that I could have posted to the blog much sooner than this. In fact I've had three or four half written post in my drafts folder waiting to be completed and mailed for several days - but somehow none of them seemed appropriate, and I haven't been able to complete them in a way that feels right. I've also received emails to which I know I should send replies, and again - I'm finding that I'm not finishing them. Sorry - but you'll have to bear with me. I seem to be living my life at about half speed at the moment - both mentally and physically.

Counting back to the beginning of July (when I went back into hospital to deal with the return of my leukaemia) I've spent about three of the past four months in an isolation room in hospital (two long stints of approx. 6 weeks with a gap in the middle). Even with visitors, all the medical personnel, email and phone calls I was still spending a lot of time alone inside my head. And what with the relapse, two big lots of chemo, all the other drugs, the associated mental confusion and inability to concentrate or focus, the infections, pain, lack of sleep, the transplant, fear, ignorance, and all the other stuff going on in there - my head has not always been an easy place to be. I know that's a big chunk of self pity, and I promised myself not to do that in public. I also know that I need to say or shout it out at least once. So. Done. Move on.

Coming home has involved lots of changes in mental attitude too. In hospital I was pretty much able to just exist with no effort at all. Apart from bathroom breaks almost everything was done for me. I was told when to take my meds, food arrived, etc. Half the time I was being drip fed so I didn't even need to eat. Being at home and having to look after myself (to some extent) and be responsible for my medication schedule, feeding myself during the day, exercise, etc. is good as it makes me concentrate on what is going on. Otherwise I'd be quite happy to drift and just let time pass in a haze.....

Exactly a week ago I wrote this (though it never got posted):

At the moment I'm absolutely knackered. Just got back from my first 'routine' trip to the hospital for a checkup.God it was busy in the clinic - I never realised there were so many flavours of acute and chronic leukaemia and lymphoma and all the rest - but we all end up there - with a plastic tube hanging out of our chests and nurses sucking blood for the vampires to test.....

The good news is that I'm fine - there's nothing abnormal in the initial results and the doc won't need to see me for a fortnight. I still need to go back next week to have the tests and my tubes flushed, - but dont need to hang around nearly so long...

This week I'm still tired, but not as much - so I must be making progress even if I don't feel it. I got back a couple of hours ago, and was still tired from the walking etc, still needed to lie down and rest - but I'm not feeling like collapsing which I did then. As always - small steps.

This time my haemoglobin counts are low enough that I have to go back for a blood transfusion on Wednesday. While I'd prefer not to need it - it's part of the standard treatment. There's one other patient here who I've been following - she's almost exactly 6 months further along than me - and she's still getting the occasional unit of blood 7 months after her transplant - so I'll probably need them for some time to come.

Enough. I could ramble on but this message has been days in the making and if I dont post it now it may never see the light of your screen....

Day 3x - Thank you all

Malcolm! — Sat, 27 Oct 2007 19:54:05 +0800

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.

Timing.

Malcolm! — Sat, 27 Oct 2007 12:19:49 +0800

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.

Day 31 - At last!

Malcolm! — Sat, 20 Oct 2007 17:03:36 +0800

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!.

Day 28 - when is a stomach like a kitten?

Malcolm! — Wed, 17 Oct 2007 14:04:50 +0800

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....

Day 26 - Diet, Side effects and sleep

Malcolm! — Tue, 16 Oct 2007 13:07:18 +0800

"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...