The brain jam

27/11/13

6 AM Ah! that's OK. I've been ferried to the bathroom, returned and have a little time when no-one is likely to bother me much.

[That's how far I got with that. To return to what I was writing yesterday and the day before....]

25/11/13

I did a lot of fishing in my life BC, but this isn't about fishing. Good fisherfolk have a number of admirable qualities, two of which are calm and patience.

   My first fishing expeditions were with a hand-line on a coke-bottle. No fancy rod and reel, just 75 metres of fine line, swivel, sinker and my savvy.

   From time to time my line got tangled. Untangling a fishing line depends upon one vital principle - keeping the knot loose. Then examine it. That's where calm and patience come in. More haste, usually less speed. Lose your temper and strangle the knot, and you've probably wrecked a good hand-line.

   I've always felt that a lot of problems in life can be approached using the same principles.

   I'm not certain how this relates to what I'm going to say next but I'm not sure it matters. I don't care really and you can't keep a problem looser than that.

   As you may be aware, a new problem quite suddenly came to the fore as a consequence of the spread of this brain tumour down the neural pathways. New to me, anyway, but no doubt familiar to the neurologist and to most GPs.

   It’s called dysphasia. In my case the cognitive area of my brain – the part that does the thinking – is going along at a fairly reasonable pace right now. Other parts are really running on empty or there are traffic jams in information waiting to be processed. Some lanes are freed suddenly only to get blocked again.

   If I didn't have this condition I would never have understood it, except on a superficial level. You have to be inside it. I know, you can say that nearly anything, but this is dysphasia and it's sure stuffing things up for me.

   In my ability to communicate via keyboard, it’s crippling.

Imagine for a start that someone reconfigured the keys on your keyboard randomly every minute or two as you were typing.

Imagine 

...that some letters in words you were typing failed to come up on the screen when you were sure you typed them.

...that totally different letters appeared on the screen bearing no relation to what you typed.

...that the Backspace and the Return keys regularly changed function.

...that a particular letter never came up on the screen.

...that even though you knew it was the wrong letter, you typed it anyway.

...that characters and words come out scrambled although they left the thinking part of your brain intact.

   Suddenly, that's my world. Familiar territory for the dyslexic no doubt. For me that's just the half of it. Couple that with failing eyesight [through seizures] that makes full stops look like commas or semicolons or apostrophes. Memory quirks and fails that make me forget where I am in a word or sentence, let alone in a thought.

   Touch type? I've been reduced to typing with just one hand because of right side semi-paralysis. Forget those ancient skills. I never was a touch typist but I used to type almost as fast as one.

   Voice recognition? With throat and mouth seizures, my voice is slurred and variable. No.

   There is one partial let-out clause. If I spell everything out loud, one character at a time, slowly, then it translates tolerably well. That does nothing for creativity, but at least it is correctable with another editorial pass over the text and made readable. It may be rubbish, but it's readable rubbish.

   So getting back to my fishing line analogy, all I can do in my outlook is to keep the knots loose. Be patient. Sacrifice some goals for the sake of others. Accept the limitations caused by this new condition, work around them where possible and be content with smaller fish.

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Hospital 2

continued from hospital 1

I expected to complete this story earlier, but events overtook its rambly journey. Consequently, I’ll trim it down because time’s growing short and my [abilty to precess the words to the keburd hs suddly abut collasped. It has thaken me an abut fe minute to write thag three sentece] ability to process the words to the keyboard has suddenly all but collapsed. It has taken me about fifteen minutes to write these three sentences.

   This isn't getting the story finished. I thought I was about to face one of the things I dreaded about being in hospital, something that was not necessary when I was in hospital twelve weeks ago. I would be getting ferried by mobile potty-type chair – minus the potty – to a position which seemed high above the toilet bowl. When I and the toilet had completed our assignation there would be what I had previously regarded as the greatest possible attack on my dignity. 

   You know what I'm talking about. To put it very delicately, it’s having your adult arse wiped by by another human being.

   You know what? As many adults have discovered, long before I did, this procedure turns out be nix, nada, nothing. The nurses have done it a thousand times and to them it’s just another minor but vital task.

   For more than sixty years I couldn’t imagine myself needing this help, except perhaps as a frail old man in some distant future. I didn't think that I might become ill in a very short time. After all, Tracey and I had been playing squash three times a week up to the day before I got that first seizure. 

  I suspect women are not so squeamish about medical things to do with their bodies as men, especially men of ahem... mature years – men used to being in positions of power and authority.

   You feel awfully vulnerable that first time with a nurse of any age standing behind or beside your bare buttocks with a wad of loo paper in hand. You don't have your protective CEO suit on hospital.

   But here I was, last Friday, not a CEO of anything, facing the prospect of being ferried to the toilet. 

   To backtrack a little, I was going to call a nurse, get myself shovelled on to the portable commode chair and deal with the stomach pains in the bathroom – immediately. 

   But then I had my doubts that I was going to make it to my destination unscathed. Or maybe the carpet wasn’t. 

   I passed this calculation of time and motion on to the nurse as soon as she arrived. It was a busy night and I wasn’t the only customer in the shop. As unflustered as professionals always are in these circumstances, she bid me stay right there (like I was going to flee the country right?) while she got a bed-pan. She did this with alacrity. 

   Usually it's not hard for a person to turn on their side in bed, so that the pan can be placed in the right spot, then both the person and the pan can be turned upright so that the person is neatly on the pan and good old gravity can do its thing when needed. The problem was that my right side was weak and things seemed no longer Code Red but a marginally Whiter Shade of Pale. [That is so disgustingly bad a piece of purple prose I’ve got to keep it. Bulwer Lytton Awards, we have a winner.] 

   I decided that it was safe for me to attempt the marathon journey of five metres to the toilet. The effort of getting me up on to the pan had temporarily quelled the desire. The bed-pan was abandoned. 

   We negotiated the terrain to the bathroom without incident.

   After several trips to the toilet bowl now with my private chauffeur and my privates exposed, I think I’ll be ready for the bed-pan now, should the need arise. I don't say I like the idea, but I’ll cope.

    You're all just dying to know if the visit to the loo was a success, right? Well, no, it wasn’t. I was still too freaked by the bed-pan it seems. But you'll be happy to know it was only a temporary setback and a few hours later with another visit to the bathroom, it all came out just fine. 

   This post is dedicated to the many like me who have looked after their bodily functions from childhood but now face handing that jealously guarded care over to someone else. My message is, don't be afraid. Nothing bad is going to happen. On the contrary, you are going to learn a spectacular lesson in humility. If you accept with good grace what can't be changed – and with humour if you can – what would seem a blow to dignity soon ceases to become so. 

   It isn't a blow to dignity, anyway – just to pride – and there's a difference. The difference mainly concerns attitude.

   You can see how quickly I got over those first feelings of horror.

hospital 1 | hospital 2

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Hospital 1

16/11/13 17:15

We are told that as we get older, time speeds up. It makes sense on one level. Each year is a smaller portion of our life experience. At 2, a year is half your life. At 52, a year is barely a morsel of the pie-chart. No wonder the weeks  flash by.

   But age makes no difference to time in some respects. It feels, now that I'm back in this hospital, as if practically no time has elapsed since I was here last – twelve weeks ago.

   The huge difference is in me. When I left last time, I could walk – with a frame, that’s for sure – but now I have no safe grip with the right hand. When I left last time, I could get to the bathroom unaided, stand at the sink to wash hands, clean teeth, or stand at the toilet. I could exercise my legs in the passageway. When tired I could put myself to bed.

   At any time I could easily get myself from bed to chair, where I could open my window on the world via the laptop.

   I can’t do these things now, but I didn't really know the significance of that until today. Everything is set up in a hospital to solve these problems, right? Well, yes....

   We arrived at my room yesterday at about 4 pm. It was difficult for staff to get me from wheelchair to chair. At home, Tracey and I had our own method, involving the frame. With care and time, it wasn’t hard, and didn't mean Tracey was taking my weight.

   But here, the two staff were holding me firmly on either side. It felt wrong although they were doing everything right.

   It felt too late for me to have my usual afternoon sleep. Dinner was at the hospital time of 5.30 PM. You know, that time when everyone’s hanging out for their full evening meal.... Ha ha.

   But you go with the routine. There’s not much choice. I didn’t want to start setting up an internet connection, and staff who knew me dropped in for a quick hello.

   “It’s lovely to see you back.” It was often said, or a near equivalent. Only a few realised the irony, but it was a greeting sincerely meant, so Tracey and I privately enjoyed the joke.

   “We have so many patients in. Would you like to go to bed now?”

   “What time is it?”

   “7 PM.”

   I laughed, but had a quick think about it. 7 PM bedtime was even more alien to me than 5.30 PM dinner. But the day and its implications had taken its toll on me, and they were busy. So I figured it was a good idea to sleep while I was tired and see where the evening took me. I didn't have a plane to catch.

   I woke what seemed many hours later, bursting to pee. For the first time my new dependence struck home. I couldn't just shuffle off to my bathroom on my own.

   But I could of course call for a nurse to bring me a bottle. The call button was there, dangling above my head, and I had one good hand. I pressed it.

   As I said, it was a busy night. I heard the alarm ring at the other end, but amongst a host of others. I was going to have to wait my turn.

   There's nothing you can do in these circumstances but batten down the hatches, as it were. There may have been cases much worse than mine. I hoped they were, if you know what I mean.

   Eventually a senior nurse bustled in, very apologetic for the delay. I was too happy to see her to complain, which would have been both churlish and pointless. With great difficulty because of the lack of responsiveness of my right leg we got me into a standing position to drop the drawers (i.e., pull the trousers down). I then sat on the side of the bed, the deed was done.

   “I’ll try sleeping on the other side now.”

   To return me to a sleeping position, another struggle with the paralytic leg ensued.

   “I’ll put the rail up on this side as well,” she said, ”and you can use it to turn properly to this side.”

   It was a good idea. I had solid grip with that hand and could turn myself right to the side. Still, it seemed strange to be in what looked and felt like a baby’s cot, even though the side-rail was barely a palm width in height from the  bed.

   “I guess I'm not going anywhere. I don't have a plane to catch.”

   But it was a stark reminder of how things had changed.

   “What time is it?”

   “A quarter to ten.”

   Hell’s bells. I expected it to be about 3.00 AM.

   I settled down to try to sleep and after 30 minutes, there was pain and a deep rumble in my stomach. It had been upset for days. I realised that was not my bladder this time that was demanding urgent attention but something that was not going to be solved by a bottle by the bedside.

   The buzzers of other patients signalled yet more demands. I was back in the queue, with increasingly urgent business to attend to.

I intended to get further than this but am having vision problems, so will finish this next time.

[continued]

hospital 1 | hospital 2

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The dangling leg

Tracey usually tucks the baby in at night; a more pleasant ritual for the baby than for her, but it does serve more than a ritual purpose. 

   I of course am the baby. She helps me turn on to the side I want to sleep. She then packs the blanket a little down my back, and we hope to have a good night’s sleep. 

   I usually sleep as if I have a total shut-down, and often not a muscle seems to have moved till morning. I can't say the same for Tracey, though, but it's not something I can control. There's not much of anything I can control these days.

   Some nights like last night I have something I want to try to finish, and Tracey is tired earlier than I [I can't imagine why!], so I put myself to bed after she goes. It usually works out OK but never so good for me as the tucking-in routine. Getting a near-paralysed foot into the right position to sleep is no easy matter. If it's wrong, the ankle aches all night.

   I woke at about 3.30 am with my right leg hanging over the right side of the bed. That's never happened before. I was diagonally across the bed but managed to get myself on my back, but couldn't get my leg back into the bed. 

   I could have called for Tracey but figured this was something I should be able to solve for myself.

   The best solution was to get the left foot under the right leg and to drag it back in, but I had to be very careful not to slide right off the bed attempting that. We might have been in for another ambulance visit if I did so. Another complication was that the bedclothes – a doona and a light blanket – were slewed across and over the side with the leg. This complicated matters.

   I managed to hook the right ankle with the left foot. With much groaning [in effort, not in pain, but enough to be afraid of waking Tracey, who has lock-on fix on noises from this room]. I dragged the leg back bit-by-bit like a creature going back to its den with its half-dead prey.

   I took a few deep recovery breaths and then raised the bed using its electric hydraulics so I was high enough to turn on the lamp, and straightened myself in the bed. I had yet to unscramble the blankets sufficiently to cover myself. Bear in mind that I have to be able to find a corner of the cover I can grip with the left hand – not a bottom edge! – and bring up the covers in enough order to put them back into place, and that a semi-paralysed right side doesn't allow me to raise my body to do that without quite a bit of effort and a fair dash of luck.

   I was more-or-less successful. I had blankets over me. I decided against trying to get out of the left side to relieve my bladder [it wasn’t urgent]. I didn't know what strength I had left and having succeeded in not-falling out of the right side of the bed I was determined not to do it out of the left.

   I slept fitfully for some time, and then bowed to the inevitable and got up, being super-careful to balance enough to be able to grip the frame left-handed, then stand evenly on both feet before the right-side tremors became too violent to stop me grasping the right hand on to its grip and locking it on. Success. Narrowly.

   That meant I could negotiate my way the one metre to the chair. Be grateful I don't ply you with the steps [mostly backward] that I take to get there. But I did it. I was awake till after the doctor visited at ten o’clock, and Tracey settled me to bed.

   Before that, she told me that I had been making weird noises and movements at 2.30 AM, and she had stayed by the open door for ages in the darkness. When I had settled, she went back to bed. I suspect I had had some sort of seizure, leaving that leg out of the right side of the bed until I found it there. She wouldn't have seen it on the Baby Monitor from its position. I felt happy that I hadn’t called for help with the dangling leg that couple of hours later when she was deep asleep. Happier, I might add, than she was.

   When I woke this afternoon, there was rain beating softly on the roof, and it was 2.15 pm. Every limb, every muscle, every finger and toe was exactly as it was when I closed my eyes. It was warm and blissfully peaceful. I could have stayed that way forever.

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Just one 'waffeer thin' verse

Photo: Jan Stockwell

'The highest good is like water.
It flows in places men reject,
And so is like the Tao....'

Please bear with me a moment before I tell you what this is about. I promise, Scout's Honour, it won't take long. 

   If you've been following my postings for a long time you’ll know that a guiding light in my life has been the Tao te Ching [pinying translation of the name: Daodejing].

   When I began teaching the year-long course, the History of Asian Civilisations,   the Tao te Ching was allocated its own time-slot. The reason was that students needed time to start to understand the broad philosophy behind it, which I tried to explain in another series of postings.

   The Tao te Ching is somewhat cryptic, and like a set of instructions for doing something on the computer, it makes a lot more sense after the task is completed than before it.

   One other explanatory thing. Taoism has three strands; philosophical, religious and popular. Reading about Taoism on the web may take you to any one of the three. Concentrating on the Tao te Ching itself neatly avoids the trap of confusion amongst the three. I am talking here only of the philosophical strand.

   I've decided to take one of the ninety Tao te Ching verses that puzzled students, and explain it via just one translation. When you read it, don't be surprised if you don't get all of it. I'm going to try to unravel and exemplify it.

   This is the verse. It starts with the premise that order is the most desirable state, whether for the universe, society, or for a family. Following it is my explanation.

38

When a truly kind man does something, he leaves nothing undone.
When a just man does something, he leaves a great deal to be done.
When a disciplinarian does something and no one responds,
He rolls up his sleeves in an attempt to enforce order.

Therefore when Tao is lost, there is goodness.
When goodness is lost, there is kindness.
When kindness is lost, there is justice.
When justice is lost, there ritual.
Now ritual is the husk of faith and loyalty, the beginning of confusion.
...
It is the beginning of folly.

When a truly kind man does something, he leaves nothing undone.
[This relates to someone having a complete understanding of the nature of what they’re doing. Only a compassionate person achieves this level of awareness.]

When a just man does something, he leaves a great deal to be done.
[Justice means arbitrating between two or more people. Each may have a case. If so, one may still have a grievance once a decision is reached. I return to this below.]

When a disciplinarian does something and no one responds,
He rolls up his sleeves in an attempt to enforce order.
[Force or the threat of violence is going to be used in this case. Force may achieve a return to order, but leaving discontent, and often at horrific cost.

The paragraph that follows this details the stages in loss of order.

Therefore when Tao is lost, there is goodness.
[When all is in order, enough said. But if it’s not, then people have to be good to each other to keep things on the level.]

When goodness is lost, there is kindness.
[Taking a relationship as an example, the next step down from goodness is a willingness to be kind to each other, in an attempt to hold things together.]

When kindness is lost, there is justice.
[The relationship has deteriorated further. Now there's nothing for it but to have it come before the court. There's property involved; maybe kids as well.

When justice is lost, there is ritual.
[They decide to stick it out, maybe for the sake of the children. They simply go through the motions of normalcy in a ritualised way.]

Now ritual is the husk of faith and loyalty, the beginning of confusion.
[It becomes obvious that the relationship is a sham. Those in this relationship or affected closely by the behaviour of the parties suffer. Signals become more and more mixed. “...the beginning of confusion.”

It is the beginning of folly.
With no order to go by, the most extreme of events may occur. 

   I've used a modern example here to show that this ancient text can be applied to a social phenomenon which happens world-wide, even though it has variations according to local custom and religious tradition. 

   It could apply to countless other circumstances where they descend from an ordered or balanced state down a ladder of disorder into chaos. Some would point to climate change, civil war, the increased abuse of drugs, obesity and carcinogens, over-population and over-consumption.

   The Tao te Ching is all about how to deal with this at any stage – a mindset rather than a recipe. It does not say that all systems begin with perfection and decline thereafter, although we might be forgiven for seeing a great deal of what’s happening in the world showing signs of this descent. if not from a perfect start.

   Understanding the nature of a system or a problem provides a chance of returning it to order if it goes out of whack. If it can't be fixed, understanding it properly at least gives the best chance of coping with it.

   I'm sure you understand why this is uppermost in my mind at the moment.

___

Translation: Gia-fu Feng and Jane English

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A trip to the Oncologist

Source

We haven't visited my oncologist much. Two, maybe three times a year at most. That's because there's really not much he can do, which isn't to say he doesn’t watch over my progression carefully – he does. But in practical terms, he sanctions minor adjustments to meds – that’s about it.

   He’s good at his job. I regard him as one of the best. Not that I've got all that much experience in ranking oncologists, but I can tell - and so it appears can the hoards of patients he has.

   But today we met probably for the last time. We prepared for the visit by listing a number of points about how things had gone since the last time we’d seen him. That was only two months ago, and the smaller gap between visits was because we knew my condition was deteriorating quite rapidly.

   Going out anywhere for me now is quite a hassle. It begins right here where I'm sitting. With the aid of the chair I crank myself up so I can stand. The steel frame is ahead of me. I grasp the left handlegrip firmly while the right hand waves its way towards its grip.

   I usually miss it. The spasticity of the hand tends to guarantee that result, no matter how carefully I try to guide it to its target. Sometimes I get it right, but the fingers are hopelessly curled.

   Tracey is often there, which makes it easier. She opens my uncooperative right hand and spreads my fingers along the grip. Then she locks the thumb on.

   Now I have the chance to maintain balance.

   The object of the exercise in yesterday’s case was to get me into the wheelchair. For that, I must turn myself at 180º on getting up from the chair. My left foot is the agile one, so it must do the twisting and turning little by little while I balance using the frame, and drag the right leg into position an inch at a time.

   This means moving in a clockwise direction. I can't balance on the right foot, you see, in order to go the other way. By this time it is curled awkwardly. Moving it backwards turns out best.

   I did the 180º turn eventually and Tracey had the wheelchair behind me. Sitting in it was trickier than you might think. The right knee was locked, and unlocking it suddenly might have brought me crashing down.

   “Keep your right arm in as you sit,” Tracey reminded me. Failing to do that means the ridiculously sensitive skin of the right arm is raked by the wheelchair arm, and will look like someone’s tried to skin me alive.

   I kept my right arm in, allowed the right knee to unlock as gently as possible, took the weight with my left arm and hand, and eased myself down.

   “A journey of a thousand metres begins with a successful sitdown in the wheelchair.” [Ancient Buddhist proverb.]

   The next tricky bit was the transfer to the car. Christian was away so this was a two-person job instead of the usual three. I've decided to spare you a description, and spare you one of getting out of the car into the wheelchair at the hospital. Every transfer is fraught with danger, but we made it unscathed.

   We’ve taken a full half hour to do the five-minute trip from home to surgery. When I could walk to the car, not long ago, it would take four minutes.

   The waiting room was chock-a-block full. Tracey was forced to stand beside me until a chair was vacated. My appointment was for 2.30.

   We needn’t have hurried. The Melbourne Cup [3 pm start] came and went. It provided some entertainment at least. I'd forgotten what a buzz the Cup gave the once-a-year experts.

   Our turn came. Tracey wheeled me in, and Nick greeted us warmly. We’d got to know him quite well over the four years and there was a mutual trust among us and with Pam, the Head of the Public Hospital Oncology unit. They had all the relevant notes and Tracey gave a copy of ours to each of them.

   There were no surprises. We all knew each other well enough for Nick not to offer hope, as he might have done to people different to us, of yet more proteinuria tests in a few weeks and another possible burst of Avastin. We knew that it had done a great job but had outlived its usefulness and was likely now to do more harm than good. Clearly. he and Pam both agreed with us on this.

   “Now is the time to do everything and anything you want,” he said, “Eat your favourite foods, have a glass or two of wine.”

   “We already do,” Tracey told him.

   He came from behind his desk and, with the warmth of a friend,  shook my left hand.

   Pam leaned down and put her arms round me. “Hug,” she said. “Give me a hug.”

   “You were always bossy,” I hugged. We laughed.

   In a few minutes we’d be driving the short trip home, with a careful transfer at both ends, and I'd be back in my chair again. But as we rolled out of the surgery, the sun was warm on my face, and the breeze had settled. Parrots were chattering in the trees across the road.

   It all seemed strangely new.

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Where have I been? Where to from here?

25 September 2013 will probably end up being a memorable date in my medical history. It will almost certainly mark the date of my final dose of Avastin. It was exactly three years ago that treatment with the drug began.

   On 3 December 2009 I got the first warning that I had a brain tumour. We had it confirmed on 19 December and I was operated on almost immediately to have as much as possible of the GBM[4] removed.

   From January to early March 2010, I had oral chemotherapy and radiotherapy in Melbourne to attack the visible remainder and inhibit the spread of the tumour’s tentacles through the neural network.

   When I returned to Armidale I began a course of intravenous chemotherapy but it became clear by mid-2010 that I would die within months.

   So far, this fits the standard pattern of life expectancy for a GBM patient of any age. About ten months after diagnosis, on or after conventional treatment, you die.

   I firmly believe that we followed best practice up to that point. Given that you're told after diagnosis you have three months to live if you do nothing, there's no time for experimenting with non-invasive treatments.

   Steve Jobs of Apple fame experimented with such treatments and admitted shortly before his death from pancreatic cancer that he had mucked around too long with useless remedies, and that delay was going to hasten his death. He should, he said, have gone straight for conventional treatments and he believed that if he had, he would have lived longer.

   I think so too, but it's only my opinion and yours may differ. That's fine, but just make sure it’s based on informed sources. There's plenty of rubbish floating about on the net and if you take it at face value it can look convincing enough.

   Everything changed for me when I began taking Avastin intravenously in September 2010. It was like a cripple being cured. Well, almost. Let's not get too carried away. I knew it was just a stay of execution, so to speak, and with luck I might get 6-9 months tolerable life out of the expensive brew.

   With care, scrupulous hygiene, avoidance of infection by unnecessary contact, with love and good management, I got an amazing three further years of life from an infusion of Avastin every three weeks.

   During that time, the slow but inexorable slide to poorer and poorer physical health occurred, as the tumour regained its strength – in recent months at an exponential rate. 

   Mentally, the slide has been slower, but I know and Tracey knows the falloff in mental performance is there, masked on this blog by taking hours to compose and type a few paragraphs, by spell-checkers and strategic use of search engines.

   Avastin was never designed to treat a patient for three+ years. A year, maybe eighteen months – stretching it. And yet I went on, every three weeks, conscious that the proteinuria count was showing decreasing capacity of my kidneys, and maybe other organs, to cope with Avastin’s side-effects.

   The nature of the dreaded seizures also changed. It was as if the neural paths in the brain for instructions to the right arm and leg had all but burned out. Just a few more neurons to shatter on the right side – the gripping capacity of the opposable thumb, the proper working of muscles for the throat, the eye and the mouth. It's still working on those neural pathways, but occupation is almost complete.

   That's the pathway to this point. It's not a crossroads. There are no other options as far as I'm concerned. But let’s be clear – it's not an end point either. Not yet. 25 September was a month ago and my rate of decline is still constant, but I continue to have cognition, a hand to type with, and a computer to store the data. And I'm still me. Well, I hope so. I believe so. You can tell me if or when I start acting like someone else.

   It happens. If a node of this tumour appears in the ‘personality’ area of the brain, I may well become someone else. Someone you wouldn't want to know.

   But not so far, I hope. Losing my identity is one of the few fears for the future that I have – fears which have appeared in my consciousness at least. Others will surface, no doubt. I don't pretend to be bloody Superman.

My trusty "electric chair"

   I've had nearly four years to arrive here and to think about this. Not all with a terminal condition have that luxury, if I can call it that. Avastin doesn't work for everyone with a GBM brain tumour. It worked for me but now it can do no more.

   I accept that.

   If you imagine that I'm going to take to my bed and just wait till the brain tumour takes over, forget it. I'm not. But if you think I'm going to go for one or more invasive treatments, I'm not doing that either.

   My body has had a lifetime dose of rays of varying wavelength through radiotherapy and x-rays. That's out.

   Further chemotherapy we know to be ineffective.

   Surgery might do some temporary good - or may make my condition far worse. Whatever life of fair quality remaining could be lost.

   I'm not up for the hassle. I don't do odds-on betting. I’ll take my chances with what I have left. We have some measure of that and it's one of the few things over which I have control. The decision, I mean.

   Seizures quietly continue their destructive path, each time taking a bit more. If I close my left eye and view my world through the right, it is a very blurred interpretation of what I know to be there. If I had to rely on it alone, it would be maddening. And it will get worse. The left is still good, when I'm alert. Sometimes I touch the right corner of my mouth and find the skin around it slightly moist. A few more seizures in that area and I may be drooling.

   There are many wild cards in the deck. Heart failure and stroke I place at the top. There's no way to predict those and if there were, so what? Better to leave that in the lap of the gods. That's my preference.

   I’ll fight to be able to sit on a toilet or, as I have found necessary, a commode. Stomach problems increase while mobility declines. This is a very bad combination. I loathe the commode, but have you considered the alternatives?  

   I will fight to shuffle along using this steel frame. Tremors of the right arm and leg, sometimes violent, are proving to be my worst enemy, physically. I didn't expect that. I’ll accept the wheelchair, but only because it reduces risk. But I will move these arms and legs, the right-side ones pitifully if that's how it's to be – and it often is – rather than have my world limited to a bed.

   I’ll accept limitations that must be borne, but work with what I have, and what the world is willing to offer me. I know only too well on whose shoulders my future rests.

Photo: Tracey James

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