My right foot – and other bits

Christy Brown (1932-1981) had cerebral palsy, leaving him with control over only his left foot, but as an artist and author, he made good use of it. His life story as told in his autobiography, My Left Foot, was made into a movie in 1989.

Sadly, my right foot is just the opposite. It's damn near useless.

Brain damage or malfunction produce phenomena for which you can be quite unprepared, even though their effects make perfect sense in retrospect.

My Right Foot
opposite in every way from his left

   Let me give you a couple of examples. When I am going to sleep, I lie on alternate sides, sleep by sleep. As I turn to lie on the right side, I encounter this strange object. It feels like the smooth branch of a young tree. It is warm to touch and obstructs the path for my shoulder. Something hangs off the end at right angles to the main branch.

   I touch it with my left hand. I realise, with a shock, that it is my right arm and hand.

   Something then registers in my brain that the arm has the sort of sensation my lip feels when I've had a local anaesthetic injected into my gums by the dentist. I can feel something but know there’s no sensation deep down, nor of heat nor cold on the surface.

   It feels utterly weird, this arm, as if I don't own it – as if someone has strapped this thing on to me. Using my left hand, I can arrange its placement for sleeping, each portion bit by bit.

   Yet it can be made to move on its own, with effort, in certain directions. The movements are, medically, spastic. They overshoot or undershoot the target. The fingers may grip one way but not another. I try to bring index finger and thumb together, and they can touch, but the moment I try to squeeze them together, each curls up in its own direction.

   It also manifests in other ways. Sometimes I am trying to open the laptop computer – one-handed, needless to say but I'm saying it – and it won’t open. The reason, I eventually discover, is that my right hand is sitting slap-bang on the lid, resolutely and mindlessly holding it down, while the left is doing its best to get it open. (By the way, I challenge you to get most modern laptops open with just one hand – it's not quite as easy as it looks the way they’re weighted.)

   Then there’s the leg. When I sleep, both legs are drawn up, sometimes to a right angle. When I wake, I can stretch the left leg so the knee is locked and the leg is straight. I go to straighten the right leg and it has no intention of obeying. I know if I give it a little help with the left foot it will, but I don't want that. I want it to straighten out on its own.

   I lie flat on my back. The leg is still drawn up, in the same position as when I woke. I summon up all my willpower to get it to move under its own command.

   Usually, given time, it will start responding very grudgingly and then finally cooperate, slowly, like a naughty child forced to do a task it would prefer not to. Both legs are now flat and I can stretch – but I have to be careful, because if I overdo it, then a fierce cramp can develop in the right calf or quads.

   The right foot. It's dead as a doornail. (Don't ask me why a doornail is so dead. I have no idea, but I’ll find out what the oracle says in a minute.... I did. It's fascinating.) I order the toes to lift or wiggle, and they just lie there. I can't get a trace of movement out of them if it were to save my life.

   All the big toe wants to do is curl downwards. I think that's a response to the ankle's collapse in function, producing “foot drop”, which is every bit as nasty and inconvenient as it sounds.

   But here’s the funny thing. If Tracey’s putting an ugg boot on that foot, and touches a certain spot on top of the foot, an involuntary response causes the toes to spring to life and curl upwards like magic for a second. "Surpri-i-se!" says Tracey. It looks ridiculous and we laugh, but somehow it feels good to see them move at all. It's as if they’ve just been messing with my mind all this time by lying doggo. (It's all the other way, actually. Mind messing with toes....or not, as the case may be. You know what I mean.)

   What is really happening is that my right side is paralysing, bit by bit. The process is inexorable, because all the physiotherapy in the world doesn't allow for the effects of the next seizure, and the one after that. For a stroke or longer term deterioration, physiotherapy can effect a cure or stall off the evil day. But in the case of a brain tumour, it's not much use when its benefits are negated in two minutes by a seizure.

   One last thing, not related to arm or leg. For these I'm blaming the addition of Gabapentin to the drug cocktail, because they started happening only then, but it may be pure coincidence. I'm referring to the onset of periods of intense drowsiness. 

   I've never experienced them before, and they’re damned inconvenient. I’ll be sitting typing, for example, get struck with this intense desire to close my eyes, and next thing I know, I look at the screen and find my hand's been resting on the keyboard and I've typed a thousand letter Cs.

   The nearest thing I can equate it to, only this keyboard drowsiness is much worse, is when I've driven a long distance, and have that intense longing to close my eyes while driving. (That’s when I've stopped, folks. I'm not entirely stupid.) I'm sure you know the sensation.

   If I try to fight it, it won’t give in. At times getting up and exercising stall it off, but it usually comes back. That hero in movies who fights off knockout sleep-drugs, he's a better man than I am, Gunga Din.

   Again, it could all be traced to the brain tumour itself and its knock-on effect, but there's nothing for it but to deal with all this as best we can.

   We can do no more, but we try not to do less.

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A flat earth and a racing land 3

Before I finish my story, I just want to go back to that little four year old child sitting there in the classroom. Even then, when I looked at the map of the world, particularly of great continents, I could see that they fitted together. The world might have been flat, but it was in the end one gigantic geological jigsaw puzzle. This affected my whole outlook on life.

   Also, I am by profession an historian. In my story, I'm particularly interested in the people who came to what we now call India and China. We know that humans came originally from Africa, and that some of them left that continent to go to other parts of the world.

   So India and China were not the birthplaces of civilisation. From a human point of view, they were empty places just waiting for people to come along. 

   I'm not sure the creatures already inhabiting those places felt quite the same way. They could have done without the humans quite happily.

   To track the progress of people into India and China is a fascinating process, but I don't want to get into it here. All I'll say is that the great mountains, the Himalayas and the Hindu Kush, made a dramatic impact on people's progress and choice of where to go. 

   India was protected from massive invasions by that great mountain barrier. It was difficult to get into, going through those narrow passes in the Hindu Kush – the Khyber pass for example. Just about no-one in their right minds would attempt to enter India via the Himalayas. In many ways, if yours was a nomadic group travelling from Europe through the heartland of Asia, it was easier to give India a miss altogether and move on in the direction of China.

The rivers provide the clue

   If you want to track the migration of people on land over large distances, and where they eventually settle down, practically all you have to do is to look at the rivers. People need water, and they need lush fertile places where they can hunt, and fish, and stay, if a settled life becomes agreeable. Unless people live right on the coast, where fish and tropical foods are in abundance, they need to travel along rivers.

   Obviously, I have to cut a long story short and simplify it so I can make my vital point. People did come into India, but it was a difficult journey, so mostly they came in dribs and drabs. They didn't come in in massive numbers at any one time. Generally speaking, they came into India at a rate that India could absorb without sudden changes.

   The overall effect of this was to create a society where people of all sorts were accepted and integrated into the social system that was there.

   China's story was completely different. People occupied the great river valleys, and settled civilisations became the pattern for various reasons, mainly because of the establishment of farming; “the hydraulic society,” it became known as, based on water.

   A settled existence compared with a nomadic one changes everything. If things get uncomfortable for some reason, nomads can vote with their feet and move on. Settled people can't. Sedentary people invest time and effort in the farm, to build solid houses, and to secure them from attackers.

   Ideas about property and ownership change. People who develop particular skills can sell their time and labour rather than farm and tend animals. Little villages can eventually become large cities. New rules are needed to govern urban populations.

   The Chinese succeeded admirably in doing all of that, but they had one huge problem. They were wide open to land invasion from their western and northern frontiers. There were plenty of people prepared to attack the settled communities in the river valleys of China. For voracious raiders like the Huns, and later, the Mongols, they were easy pickings.

   These were barbarians, as the Chinese called them, and for good reasons they feared and despised them. The constant threat posed by the barbarians caused the Chinese communities to bond tightly, to sacrifice individual rights for the needs of the community. And that mentality has carried through in China [until recently perhaps. We can't underestimate the nature of the changes that are taking place today, because they go against the fundamental traditions of China.]

   It was for that very reason that the Chinese Emperor in the third century BCE ordered the construction of the Great Wall. It was intended to mark for the first time in history the area that the Chinese regarded as China proper. There was a defined border that no one could cross without invading China.

   So there was the fundamental difference between India and China. India, because of an accident of the planet's formation, had its boundaries defined by nature, but in a way outsiders were accepted and included. There is no Indian race.

   This may surprise some outsiders, who have their own perception of what an Indian man or woman should look like. Forget those perceptions if you have them. The divisions in traditional Indian society are based on class and caste, not upon race.

   And what about China? That open boundary on the north and northwest has created a completely different attitude to the foreigner from the Indian one. The foreigner is the invader, the barbarian, with no real perception of civilisation.

   The Chinese view was that theirs was the most civilised nation on earth. At its highest, there is good reason why they might have thought this. They developed the most complex and sophisticated bureaucracy to run a nation that had ever been devised. Their literature, arts and sciences ranked with the world’s most impressive.

   India’s achievements over millennia are no less impressive in all these fields, but the Indians saw the world in a different way. And Buddhism, the export product of Hinduism, provided a uniting thread for all Asia.

   All of this has been defined by geography. If you don't understand geography, then you can't understand history, because you can't understand the human response to the challenges that geography poses. And if you can't understand a country's history, then you can't understand why it is as it is today.

a racing land 1 | a racing land 2 | a racing land 3

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A flat earth and a racing land 2

In December 2011, I published a piece entitled "Where's Asia?" For many months, it was the most popular post on my blog and I couldn't really work out why. Sure, it was interesting enough, but that fascinating?

   Then, by a bit of detective work, it came to me. It wasn't what I had written that attracted attention, it was the fact that I had blank maps of Asia in there, and that's what teachers wanted to borrow, for their own tests. So much for brilliant writing!

   I hope you did your homework. No? Well then, I suppose I better start at the beginning. And yes, I know a lot of you already know all about this, but let me go through it again briefly.

   There once was a great continent. There was a time when all the Southern Hemisphere continents which exist today were part of this one enormous landmass. For one reason or another that don't matter here, the vast continent started to break up, and all the continents we see today went their separate ways, riding on plates like those moving walkways at the airport, and drifted across the planet.

   The one of interest here, and if you stick with me long enough you’ll see why, is what we now call India. It was mostly attached to Antarctica and Africa but apparently wasn't keen on the relationship, so it took a fast escalator across that part of the ocean that now bears its name. It built up quite a bit of momentum, and eventually it crashed into Asia at the point where it now on the world map.

   This caused all sorts of ructions, but the main one was that a large section of land was pushed upwards, now called the Himalayas. It had nowhere to go but up. 

   On what is the western side or to the left if you look at the map below, it also pushed up a range called the Hindu Kush. To the northern side of the Himalayas it banked up a great stretch of land that we now call the Tibetan plateau.

   Not content with making such a mess of the southern part of the Asian land mass, it caused a good deal of mischief by raising the sea floor on what is now the Chinese side, and that's where we get those wonderful structures around Guilin that used to be the sea floor. If you look at the brown parts of the map in particular you can see how much of the land mass was raised up.

   So India's arrival completely changed the face of Asia.

   I'm not a geomorphologist, but it doesn't take an expert to see the dramatic changes to everything that this troublesome continent of India caused when it crashed slowly but inexorably into Asia.

   Some parts were actually forced downwards, and you can see what looks like a great hole in the ground to the north of the Tibetan plateau. It's called the Tarim Basin, and for a very good reason, because a basin is exactly what it's shaped like. Many parts of it are below sea level, even though it’s a vast desert, with enormous sand dunes in some parts, and huge areas of rocky sterile stony plains in others. It's a very forbidding place, I can tell you. I've travelled by train through a lot of it. What a story that was.

   But it's what the presence of those mountains do that makes a vast impact on the nature of the continent, and ultimately, its people. The high mountains catch the clouds as they drift across the land mass. It's freezing there because of the height, and what would normally fall as rain usually falls as snow.

   The mountains become snow-capped and retain vast amounts of water in the form of ice and snow. When the weather warms up, the snow melts and starts to run down into the valleys. These become the tributaries of great rivers on the Indian side, of the Ganges and Indus, and in the annual rainy season, they water vast areas of the northern part of the subcontinent.

Asia [cropped]
See all those huge rivers streaming down from the Himalayas!

   A similar thing happened on the Chinese side of the Himalayas, with the formation of its great rivers, the Yellow and the Yangtze, and the Mekong and Irrawaddy further south in IndoChina. In short, all the great rivers of Asia begin in the Himalayas.

   The snow also melts in Tibet, slowly in the summer, but it doesn't create great rivers such as in India and China. If anything, it acts as a kind of dam. The water builds up and doesn't form into rivers that race down towards the lowlands. It goes underground, and gigantic reserves of beautiful mountain water end up being stored deep under the ground in western China. At places it bubbles to surface and large oases appear in the deserts.

   You probably know most of this if not all already. What I'm interested in talking about is the effect this has had on people who came to India and China at a much later time than all this happened.

   If the Himalayan range hadn't been pushed up in the way it did by India’s arrival, we wouldn't have the Indians and the Chinese. It's as simple – and complicated – as that. But how come they turned out to be so different physically, and so vastly different culturally? That's the really fascinating bit, and my story in the final part.

a racing land 1 | a racing land 2 | a racing land 3
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A flat earth and a racing land 1

I started school when I was four. I don't mean pre-school because that didn't exist. I don't mean kindergarten because there was none in Calliope either. None of that wimpy stuff. I mean full on Grade 1. The big league.

   At the front of the classroom, there was a map of The World. It was called that, and when I went to school, that was world enough, but of course it was a map of the Earth. It was a Mercator’s Projection, which means that the Earth was flattened like the skin of an orange which had been carefully removed and opened out.

   Now, I'll be honest with you. At the age of four, the flat map of the world made a good deal more sense to me than a round one. I couldn't conceive of how the earth could possibly be as round as that. In the early 1950s, we didn't have the benefit of images from space, and rocket ships coming back into the atmosphere from space orbit, with the earth's features getting larger and larger and finally becoming the sort of flat that I comprehended at the age of four.

   I was definitely more comfortable with a flat Earth. I could look out the window into the distance and there was no doubt at all in my mind that it was kind of flat – well, as flat as it gets, if you know what I mean. We can allow for hills and valleys and the odd mountain or two.

   Even when we went the fifteen miles into Gladstone, and looked out to sea at any point where the clear blue sky met an even deeper blue ocean, it seemed to confirm my views on the flatness of the earth. Ain’t nuthin seen from a distance as flat as the ocean, although I knew from experience that it's surprisingly un-flat when you get into it, not to mention salty. Those bloody waves just keep rolling in and knocking you down if you give them half a chance. But... the land where we stood was below us, and the beautiful sea right up to the horizon line was below as well, and the sky was clearly above us. QED. No more proof required. Earth = flat.

   No-one told me about the Mercator's Projection being a flattened out view of a spherical world. As a result, it had one tremendously puzzling feature. On this map of The World, Australia was at the centreline, which is exactly as it should be given that it's always been the centre of the Known World, but – and I know you're going to find this just as amazing as I did – there was an England on the right end of the map and another England on the left-hand side. It was clear as a bell. Right there, plain to see.

   No wonder that tiny little Britain had managed to put all those pink bits representing the Commonwealth on the map. Gor Blimey. There were two Britains, and I guessed that would have made the work of conquering so much of the world a lot easier. Pincer movement like.

   I admit I didn't know quite how it worked, but it was on the map, and it was a nice map, with beautiful printing, so that must've been how it was. Anyway that was not my problem. Somehow, they'd got it together and between them created a mighty empire.

   I must also say that there was a globe on the teacher's table, and we could always spin it around, if she was out of the room or was writing sums on the blackboard to make us miserable later.

   I liked the globe very much and it made a sort of sense to me, even if they never could make it straight up and down, but always on that silly 23.5 degree angle. You'd think quality control would have stepped in long before and made them fix it. But, you got kinda used to it, and I have to admit now that straight up-and-down somehow wouldn't feel right.

   Children have a wonderful capacity to doublethink, so I didn't try to put the two of these representations together. The flat map of the Earth and the globe existed as separate worlds in my four-year-old world, and that was okay.

   As a matter of fact, many adults still have this same ability to doublethink. You only have to look at their views on politics. But, let me not get off the track.

   What was the track, do I hear you ask? Ain’t it bleedin obvious?

   Possibly not. OK.

   It's just that several days ago, I had the thought that I might write a blog piece on a certain subject, and I'd even prepared some maps for it. But the ABC, in its infinite wisdom, has a programme on this very night, called Rise of the Continents, and I'm afraid it might pre-empt my little lecture. 

   So, just to prove to you that I didn't get the idea from the programme, I'll put this map below, and I want you to look at it. This is about what a runaway landmass did, and how it created two very different societies.

   No, in fact, I want you to study it deeply. This is your homework. Questions, as they say, will be asked.

   All will be revealed tomorrow. Tomorrow-ish well. Don't be so pushy. I've only got one pair of hands you know.

   Umm, I've really only got one hand that works, so lay off. You just stop being cruel to the disabled.

a racing land 1 | a racing land 2 | a racing land 3
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Going over to the dark side 2

[Continued from Part 1]

So what's going on behind that seemingly calm exterior is a very complicated series of manoeuvres aimed at keeping my body in some sort of precarious balance, and giving it the best chance to support the brain that's composing these words. The reason why what you're seeing is not utter rubbish so far is that the cognitive part of the brain is not yet affected, and I still have the ability to get those words down in front of you in some sort of logical form. It can't always be that way.

   Meanwhile, the tumour, and its effects, keep on extending. Essentially, the presence of the tumour has succeeded in burning out most of the major functions of the right arm and leg simply by inhibiting and scrambling the signals to and from the brain. I've been fiercely trying to protect the tiny ability of the leg to move from the hip, even though the lower joints are unreliable. That allows me to go minimal distances, but ones which are critical. To the bathroom and back, for example.

   After hundreds of seizures, the tumour had just one last destructive mission to carry out on the right hand – an attack on a little bit it had not dealt with fully.

   I had retained a slight ability to grasp something between fingers and thumb. A concerted attack over the course of several weeks a couple of months ago achieved its goal – to destroy the ability of the index finger and thumb to coordinate and grip, even slightly.

   I now have two different seizure phenomena beginning to take place, as anyone will know from reading the medical side of this blog – seizure attacks on new and unexplored territory.

   The first is the tumour's attack on the throat and larynx – the voicebox – which has resulted in a series of seizures that at times have rendered me either speechless or unintelligible, although cognition has remained. In other words, under one of those attacks, I can think the words quite clearly, but I cannot say them.

   I begin to appreciate what those who stammer go through.

   The second, and more recent, is the attack by seizures which have now affected my head, causing loss of control of facial muscles, especially those around the eyes, my mouth and ears. Sometimes my head feels as if it is in danger of bursting at the seams.

   Perhaps it is.

   I expect these to get worse before the tumour's effects move on to other parts of my body, but who can tell? Blindness and/or loss of hearing may strike next, at any time, as could loss of control over bodily functions.

   Tracey is the only one who has seen the facial seizures. Quite often I am alone in bed when a seizure hits. I try to gauge its severity, and whether or not it's worthwhile to call Tracey in. It may appear to strike only the hand, and yet I may lose my ability to speak at this time, or immediately afterwards.

   Most of these seizures take anywhere between fifteen minutes and half an hour to recover from. I'm talking about the immediate effects here; the longer term effects may only be apparent at some later stage and usually they are much more crippling.

   When you see all that can possibly happen, you might say that for the best part of four years, I've been very lucky in certain respects. The effect of a tumour on other parts of the brain could have been more devastating at a much earlier stage.

   Explaining this in words is the only way I can pass on to you a clearer picture of the physical extent and effects of this tumour at this stage. I haven't even touched on the psychological effects of the escalating breakdown of the physical body in recent months, and the effect it has on our family. 

   That would take another entire blog piece – one that would rightly centre on Tracey, and not just in her role as carer. It is a vast understatement to say that it's a story needing to be told in its own right.  

   Thus far, I can live a life with reasonable quality in many respects, but even this time is passing very rapidly. We simply don't know what the next phase will be, except that it cannot possibly be a better one, because we have nothing left to be able to make it so.

the dark side 1 | the dark side 2

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Going over to the dark side 1

It seems an eternity ago since I used to run daily, as dawn was breaking, through the early-morning countryside ten kilometres out of town. The bitumen strip of road was not used very much.

   After rain one morning, I noticed a small weed – a sort of yellow daisy, which had somehow managed to germinate in a tiny crack in the bitumen road itself.

   In the days that followed, I watched it grow, and marvelled at its endurance. It would have been a hard life for it, because the day temperatures generated by the black tar surrounding it would have been fierce. It put in a valiant effort, and finally the scrawny little thing produced a commendable flower which ultimately, I guess, produced seeds. The plant collapsed from sheer exhaustion soon after that, and died. 

   It had performed its life's task and returned to the soil. Another generation of the little wild daisy would carry the gene.

   It seems almost indecent that I should feel so strongly the procreation urge as I near the crisis which will precede my death, but I do. It must be the primal desire inspired by the genes that makes me feel so sexually alive. It's not something I can help. It's the genes making a final, pointless declaration.

   My daughters will have to close their eyes at this revelation. I suspect they cling to the notion that they were conceived immaculately.

   Although I realise this is dangerous territory, it may be different for men from women. Women's reproductive life has a reasonably clear ending at some point, but not so with males, and my theory is that it's the stark prospect of death that drives it. Blame nature, not me. It's not simply sex for its own joyful sake, but something here which has deeper well-springs.

   It's a theory. Some might have cruder explanations. How on earth did I get on to that subject?

   It's that I see the time for the ending looming so quickly now. While others make plans for next week or next month or next year, or their retirement in twenty, I've lost all sense of scheming for the future, in all but one sense. It's only a week until the next proteinuria test that will decide whether or not I get another dose of Avastin.

   It's going to be unlikely. I know, I've said that before, and each time, dodged the bullet. Last time, we did the near-impossible, and reversed the trend of recent months. It is very unlikely that we can keep doing that, given that we were so near the limit last time and the break has been the normal three weeks this time and not six.

   In spite of living in this perpetual state of insecurity, or because of it, we make the most of each day as far as that's possible, but as you see, we look ahead in terms not of weeks, but days. At least, I do.

   Not that this is something at the forefront of my mind all the time, because that would be a tremendous and pointless burden to carry – but it's always there, sneaking around in the background. Life intrudes upon its existence.

   When someone comes to visit, I'm usually sitting quite serenely in my chair and there's no way anyone could know, if they didn't have the details, of the utter train wreck physically that's going on at an exponential rate. They might get a clue if they saw me struggle to stand to get inside the frame in order to move from one room to another, and then to see me sit down somewhere else as carefully as I can.

   It's not usually a graceful landing at the other end. I can manoeuvre into position, but the last part of it is a rather unceremonious flop on to the chair at the other end.

   I really didn't expect that the purely physical problems resulting from the location of the tumour would be my downfall – sometimes literally. At first, the seizures were most obvious in the right arm, and eventually made it practically useless. It took quite a few seizures over a long period of time – years, in fact – for the right leg to become so problematic that it badly affected my walking, and ultimately stopped me walking unaided.

   On the rare occasions I go out, it has to start with the wheelchair. From the wheelchair, a rather precipitous entry into the car, and a reversal of the process at the other end.

   The problem is that the muscles all over the body, which even the most indolent or sedentary people use in their daily life, are no longer in action in mine to anywhere near the same extent. My body gradually becomes distorted in various ways as important muscles atrophy. Balance is one of the first things to go.

   Internal organs then start to suffer. In my case it's clear that the kidneys are failing to deal with protein in the way they should, and this will result in kidney failure if some more serious problem doesn't pre-empt it. The need to take pills of various kinds to control seizures results in problems for the intestinal tract, and those in turn are treated with medication to control or keep normal bodily functions operational.

   With the best of intentions and effort, I find that lack of normal exercise means that the heart is constantly put under pressure. Without blood pressure tablets, a heart attack would almost certainly be the result, sooner rather than later. Immobility means that clots are likely to form anywhere in the body, especially the legs.

   When clots are detected, such as the ones at various times in both of my legs, they are treated with injections of Clexane or something similar. If untreated, one of them could easily find its way into the heart or brain, and that could be disastrous. Think heart attack or stroke.

   Isn't this fun? Except that it's not some unknown person we're talking about. It is I, and you might be surprised at what a helluva difference that makes to me.

[continue to final part]

the dark side 1 | the dark side 2

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Hospital shorts

This posting of bits and pieces comes from the time a few weeks ago when I was a hospital patient and the sole occupant of a large, comfortable room. Amongst the comings and goings of staff, I had a lot of time to myself, which is how I like it. I thought the posting was going to be philosophical musings of one sort or another, but as you see, neither of us knows where any posting of mine's going to go. In this case, it took a severe turn towards the practical.


Thinking

I used to have what I regarded as my best thoughts in the shower, when I was in that other world of the strong and healthy. Now, in the hospital, it's while eating breakfast.  That's my story anyway.

   The problem with both places is that they're not designed to record flashes of insight, but at least at breakfast I now have a pen handy, and can grab a piece of paper to scribble something down to try to make sense of later. 

   Sometimes, later, it's utterly incomprehensible, which I suspect means it was utter brilliance or utter rubbish.

   That's if I can read my own writing. It's sometimes not possible. In my defence, it's usually composed on a scrap of the day's menu amongst the carnage of dropped porridge, marmalade sachets and widely distributed toast crumbs.

 
Tears

Nothing tears me up inside as much as the sound of an old lady weeping. It's a sound I've heard several times coming from the room next door.

   A baby's cry, especially that of your own child, is like a saw-blade running through your whole being. But babies cry as their main form of communication when they want things – often simple things – although I admit the sound of a small child in pain is the worst thing I can think of.

   But old ladies tend to cry only when they are in deep misery or anguish for some reason, and it's painful for me to bear. It's a sound that comes from the depths of a lifetime of experience. Of terrible loss or need.

   When old men cry, they often do it without sound; no less heartbreaking for a compassionate observer, and that can be equally heart-rending.



For what it's worth - sweet and corny

“For what it's worth.” It's a useful phrase. It allows you to say whatever you like, but somehow gives it the authority of humility, even if it's not always quite sincere.


Laughter

i always enjoyed hearing the staff laughing and joking together when they were at the "nurse's station" a little down the passageway. Somehow it was comforting, whether at 4 am or 4 pm.



Mobility

Beds

This is a Rolls Royce version of the beds here,
but I have no complaints about them.

Every piece of hospital equipment is easily movable, which is vital for the heaviest. An empty hospital room can be organised at great speed to contain a bed or beds and all the necessary equipment that surrounds them for the comfort of the patient.

   A good bed itself is a masterpiece of design. It can be raised or lowered to help patients to get in and out of bed. Once the patient is in the bed, various sections of it can be raised or lowered to suit the patient's needs.

   From a staff point of view, it can be raised to waist height in order to be made up with sheets, blankets and pillows, eliminating a lot of back and other problems caused by bending down. Nor is so much effort needed in getting patients in and out of bed, or raised and lowered in bed.

Tables

This is a very basic model

There are a few devices more brilliantly designed than a good hospital table. It's adjustable in height and attached at one end only to its rollers, about a metre long, and less than half a metre in width. Given that getting up and down is a problem for me, and having only one arm with any extension and fingers able to grip any object securely, I could still make use of the full length of the table by being able to roll it along so that I could put things at any position on the table itself, otherwise I would have been limited in immediate access to a very narrow section of it. 

   I'd love to have one here at home between chair and bed, but I'm pretty sure that they cost a bomb.

   At the hospital, I had one of these between the chair and my bed. I was also very lucky to have another one on the other side of the chair. Even with very limited ability to reach across with my left hand to the table on my right side as I was sitting in the chair, I was still able to use the full length of each table to reach various objects.

   It's remarkable how quickly the space available on the table fills up. This means that I had to learn another skill.

 
Planning

One of the keys to surviving with limited mobility in a hospital is to learn the art of moving things around efficiently. Take the number of pieces of electronic equipment that I use while in the hospital, for example. I have a mobile phone, an iPad, a Kindle reader, and a laptop computer.

   That might seem excessive to many people, but each of them had a particular purpose. Each at one stage or another would run out of battery power and because I was almost immobile, particularly at the start, I had to rely upon one of the staff or a visitor used to connecting the various devices to plug them into the electrical socket for recharging.

Stable-table - worth its weight in gold!

   If all of these were spread singly across the table, they would soon have used up half the entire space on it. The stable-table I put on my knees while sitting in the chair to use the computer would have taken the rest of the space when I wanted to get up.

   So, these items have to be stacked on top of each other when not in use. And that takes a little forethought. If the item I want is at the bottom, then with one hand of limited strength and limited space on the tray, it's a case of unstacking one item at a time, getting what I want and restacking after that, trying to predict what I'm going to want next.



Adaptability

Nature shows us that the key to survival is adaptability. While it's fine to have a code to live by that gives order, stability and meaning to life, it's those who can react positively to inescapable change who cope best.

It's certainly something you need when you go into a new environment like a hospital.

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Simplicity and the complicated

See simplicity in the complicated.

Achieve greatness in little things.

                                  Tao te Ching

When I was about nine years old, my father contracted Q Fever. 

   It was well named. The disease was so mysterious in the 1950s that the Q stood for “Question” or maybe “Question Mark”. He was very sick; so sick that for the first time ever, and much against his will, he allowed himself to be sent away from the farm by my mother to recuperate at the beach.

   As far as I could ever remember as a child, he had not had a day's holiday. Uncle Frank took some time off from his job at the meatworks in Gladstone to come and help my mother run the farm while Dad was away.

   I have very fond memories of my father's illness, because he took me with him on this holiday. Nothing like that had ever happened before – he and I together – and it never happened again.

   Uncle Siv had a shack at what was then regarded as a remote little beach called Tannum Sands, now practically a suburb of Gladstone, but at that time a ramshackle little village of two dozen or so jerry-built shacks which people had put up as weekenders.

   It was a magical time in my life. Just before dawn every day, my father would take one of the fishing rods at the shack, and, with me hot on his heels, would go to the surf beach just down the little hill to catch our breakfast. There were plenty of fish about at that time, so we were always guaranteed a breakfast of whiting or flathead or bream.

   I would wander about the beach, collecting anything of interest to me, or just straddling a log washed up in a storm at some stage; special to me because it reared up from the sand rather like what I imagined resembled a Viking ship. 

   As dawn slipped through sunrise into early morning, I'd watch the change of mood in the sea and sky while the soldier crabs scurried about and the seagulls did their foraging and bickering on the creamy sands. Behind me, the dew dried from the leaves of the great eucalypts and added their scent to the salt-laden air swished by the surf. It was a poem waiting to happen.

   Life just doesn't get any better than that.

Photo: Jan Stockwell

   Just after that holiday, we were taught a poem at school which I can still recite. Anyone who has experienced the Australian bush at dawn, sitting by the ocean as the tide comes in, can easily relate to this purely descriptive song of innocence.

An Australian Sunrise
by James Lister Cuthbertson

The Morning Star paled slowly,
the Cross hung low to the sea,
And down the shadowy reaches
the tide came swirling free.

The lustrous purple blackness
of the soft Australian night
Waned in the grey awakening
that heralded the light.

Out of the dying darkness,
still in the forest dim
The pearly dew of the dawning
clung to each giant limb.

Till the sun came up from ocean,
red with the cold sea mist,
And smote on the limestone ridges,
the shining tree-tops kissed.

Then the fiery scorpion vanished,
and the magpie’s note was heard.
The wind in the she-oaks wavered
and the honeysuckles stirred,

The airy golden vapour
rose from the river's breast.
The kingfisher came darting
out of her crannied nest.

The bulrushes and reed-beds
put off their sallow grey,
And burnt with cloudy crimson
at the dawning of the day.

   It wasn't until my undergraduate university days studying English literature that I became aware of the hidden layers of meaning in the poetry of William Wordsworth. He was to me the leading light of the nineteenth century English Romantics. I was well aware, long before, of the romance of foggy autumns, two-toned critters before 1959 pink and grey Holdens, lovers on Greek pots never quite getting it on, and the pleasure dome of Xanadu, but not what Coleridge and Shelley and Keats were really searching for.

   It so happened that at the same time, I was studying the Asian philosophical traditions, particularly of Taoism and Buddhism. The connection between the  Romantics and the Asian mystical vision struck me with absolute clarity, and none more obviously than in this part of what I regard as one of the greatest of poems of the Romantic tradition in England. 

Source

Lines Written a Few Miles Above Tintern Abbey

...For I have learned
To look on nature, not as in the hour
Of thoughtless youth, but hearing oftentimes
The still, sad music of humanity,
Nor harsh nor grating, though of ample power
To chasten and subdue. And I have felt
A presence that disturbs me with the joy
Of elevated thoughts; a sense sublime
Of something far more deeply interfused,
Whose dwelling is the light of setting suns,
And the round ocean, and the living air,
And the blue sky, and in the mind of man,
A motion and a spirit, that impels
All thinking things, all objects of all thought,
And rolls through all things. Therefore am I still
A lover of the meadows and the woods,
And mountains; and of all that we behold
From this green earth; of all the mighty world
Of eye and ear, both what they half-create,
And what perceive; well pleased to recognize
In nature and the language of the sense,
The anchor of my purest thoughts, the nurse,
The guide, the guardian of my heart, and soul
Of all my moral being.

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The Avastin dilemma

As you see, I was sent a comment a couple of weeks ago by Rachel, and I thought what she said was so relevant to many people with a GBM (the most aggressive form of brain tumour, which I have), and their families, it was worthy of a separate response.

August 13, 2013 at 12:36 PM

Hello,

I am posting from Melbourne - I read your posts and so enjoy them. My Dad, aged 68, has GBM.

He has just declined Avastin as a final treatment option - he was diagnosed in March 2012. We are now just going to back off anything to do with hospitals and appointments and let him be at peace on his own terms as much as possible.

I think its natural to wonder what if he did just try Avastin, but its his choice, and I respect that. Your insights are so valuable - thank you for sharing them. I wish you and your wife all the very best. x

Rachel

Avastin works differently from chemotherapy.
Don't worry - that's not what the posting's about!

   Rachel's Dad's dilemma is one faced by many GBM patients, particularly those who are not rich, and that probably includes most of us. Although this problem is not limited to this one category of brain tumour sufferer, her father has the problem most of those in advancing age do.

I know because I was in that bracket when I had to make a choice.


The problem: is the cost of the treatment worth it?

It's a decision that in the end must be left to the patient, who should not be pushed into a decision one way or the other by any other person. They should consult whoever they like about it, but no-one else should make the choice for them, nor try to.

   Rachel and her family stood back, and let him make it. They would have had their opinions, and they were entitled to express them of course. If he chose to go ahead with the treatment, as long as he could finance that decision and not impose on them, that's where their rights ended.

   Rachel didn't say why her Dad opted not to try Avastin, but his choice was his business and not mine.* He may not have told his family why. His choice again.

   I agree with Rachel that it's natural to wonder whether Avastin was worth a go for him, but the choice for many depends on a number of other factors. I already mentioned cost and age, but let's try to list some:

* cost
* age
* other medical conditions
* concern about side-effects
* belief that primary life goals have been accomplished
* religious beliefs and/or personal philosophy

   My choice to try it was based on these considerations:

* I could afford to experiment with one dose of Avastin
* Tracey and I were in full agreement about trying one dose and observing its effects
* I was fit and healthy when the tumour was diagnosed
* I was prepared to risk side-effects
* In terms of quality of life, I was at a stage when I made the choice where I had little to lose
* there were no indications of any other problems likely to develop with or without Avastin
* I had tried every conventional treatment and had no faith in others, especially those where heavy costs were involved with no reasonable evidence of success
* I was excluded from trials by conditions set by trial researchers – usually age
* I was in any case in no condition to travel for trial treatment

   If I had had a negative reaction to Avastin, or there was no evidence that the $6,000 shot had done any good, that would have settled the question once and for all. Many with GBMs get no benefit from the drug. It would have been worth $6,000 just to know that.

   Ironically, the risk in my decision was that the first Avastin infusion might have the positive effect we'd hoped, which seems crazy, I admit. But when you're in this position, it's not quite so odd. I'll return to that.

   I think the worst result would have been a small or apparent gain that did little to improve my quality of life but gave some hope, probably unjustified. Would another dose improve things? Or would it just be a waste of money we couldn't afford to spend? Not one person in the world could have predicted.

   Fortunately, that didn't happen.

   What happened was that the first dose of Avastin was a resounding success. From a medical point of view, it was obvious that we should continue with the treatment. No doubt about it.

   We didn't know how much extra time it would give me. It was possible that its benefit would end within a couple of months, or it could have gone on for longer. There was no way that we could know. Unless something like a heart attack or stroke happened to end the program almost immediately, it would've been mad not to continue. After all, an Avastin infusion every three weeks does not have the debilitating effects of most forms of chemotherapy.

   The only thing that stood in our way was the cost, and that was my dilemma. We were looking at an outlay of $25,000 at least, within three months. It was an amount I could have scraped up from somewhere, but at a cost that would have put my family into significant hardship. Christian was still at high school, and Tracey would have been left with not enough to live on after I was gone, faced by the usual – and rising – costs of living.

   I don't know how much you know about the rest of this part of the story, but I will just say that family and friends got together to make donations and have a benefit night which raised a substantial part of the $25,000 needed. We knew we'd be able to stretch finances to close the gap at the end. We knew that we were not financing a possible cure but a possible extension of reasonable quality life.

   A large number of brain tumour sufferers are simply not in a position to do that, or to be as fortunate as I was in having generous groups and people who were willing and able to help. Others prefer not to take the risk that a significant amount of money will be wasted for very little if any gain.

   This brings me back to Rachel's Dad's decision not to have the treatment at all. He made his choice and I'd most likely back him to the hilt.

   There's no doubt that I've been very fortunate with Avastin. I don't know of anyone my age who has gone on for anything like the length of time I have.

   In the three years I've been on the drug, I've had relatively little discomfort from the Avastin itself. Without the protein excretion tests on my kidneys every three weeks, I doubt if I'd known there was any attack going on to them at all. Over this time, using the drug has caused plenty of indirectly related and serious problems, though. It's not been all beer and skittles. Far from it.

   So now we continue to play the delicate balancing act we have been engaged in ever since we knew that Avastin's positive effect has diminished, and its negative ones have come to the fore.

   Thanks for giving me the impetus to write this, Rachel.

____
*Incidentally, when doctors get what they believe to be untreatable cancers, they often adopt the same decision as Rachel's father, so he's in good company.

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