The WHAT'S NEW! page contains the latest medical updates. If you're wondering how I'm going as far as health is concerned, this is the place to start. Latest: Wed 27 Nov 2013. 7.20AM

Tuesday, May 29, 2012

A posted love letter (not Doris's)

A day or two ago I was reading a posting from one of my favourite bloggers, regarding a inexplicably tardy letter to the editor of May 2012 in response to something published in 1986.

   It reminded me of an incident from the time when I was working at the Post Office in Gladstone, Q. during the university vacation. It must have been 1968.

   At that time, I took any paid employment I could get to supplement my extravagant lifestyle on a stipend while at the University of Queensland, on the $19 per week my Commonwealth Scholarship paid. These jobs included storeman & packer on the Gladstone wharves, bar attendant and wine waiter, and proof-reader for the Gladstone Observer. I was versatile, and poor and, like Rupert Murdoch, not too humble to take anything on.

   The last of these jobs was one from which I prevented some quite alarming passages appearing in print, though was unable, for diplomatic reasons, to alter the more purple of prose in the Births, Marriages and Deaths section, popularly referred to as Hatched, Matched and Despatched. I wonder if this terminology is as frequent now as it was a half-century ago?

   But back to the Post Office. The GPO in Gladstone had a large letter receiver [that's the real name for the container where you push letters and parcels through the slot to post them]. It was so big I could get inside it easily, and often did in order to reach an item in the corner.

   It was said, and knowing some of my colleagues at the PO it could be true, that when little "Chook" Fowler got in there once, they locked him in as a joke and left him there till the Postmaster arrived at 8.30 am. No, I don't believe it, but was pleased that I was the only one there at the time of the incident I am about to relate, or they might give the joke a second run if there were a skerrick of truth in it.

   Someone had posted a Christmas parcel plastered with bright stamps to the value of what I assumed was the correct amount. Those were the days when you didn't bother too much about trifles like whether the weight was exactly right to the ounce for the postage stamps on the parcel, unless it was wildly out. It was Christmas, after all. In this case, the package was impressively big for the size of the slot through which it was delivered into the letter receiver.

   This rightly evokes images of a somewhat troublesome if successful birth, but the similarity didn't end there. In squeezing it through the slot, the sender set off a battery-controlled baby's cry from a doll in the parcel. I don't know if they knew that had happened, but if they'd posted it the evening before, there wasn't much they could have done about it anyway.

   So, when I got to work at 6 o'clock that morning, first on the scene, I was perturbed to hear very strong agitated-baby noises coming from the letter receiver. Well may you imagine the images in my mind of a newborn babe that I was about to find - a Moses perhaps, rather than a Christmas Jesus.

   Locating the source of the noise in the semi-darkness of the letter receiver was not all that hard, but I did have to get well inside the box to reach it. Sitting on the floor of the letter receiver, I rather gingerly prodded and poked the parcel to ensure that someone wasn't trying to post a real live baby to Sarah Holmes of Spring Hill, Queensland.

After being squeezed through.
   I was reasonably confident we were dealing with a dolly and not a baby, on a number of counts which I won't go into here, but the most telling of which was the diminutive size of what I was prodding, together with the fact that poking in one spot would stop the frantic crying, and pressing in again would set it off once more, exactly as lustily and with no change of timbre, pitch or intensity. With rapier-like powers of deduction, I decided it wasn't a newborn member of any living species, although bearing in mind that a baby koala crying sounds disconcertingly like a human new-born.

   I did that once or twice more just to be sure, and after leaving it in OFF screaming mode, tossed the parcel into one of the mailbags. I daresay dolly might have spent the entire journey to Spring Hill alternately wailing and sleeping when bumped, unless someone investigated further or her battery gave up the ghost on the Rocky Mail train that night.

   But crying dolly was not what I was talking about anyway. When I was sitting inside the letter receiver, my eyes got used to the dark. I looked up for some reason, and saw that a letter was stuck in a crack below and to the side of the opening. No-one would notice it so high up except by sheer chance, as I did. If Chooky Fowler had been locked in there for some time, he hadn't seen it.

   Someone must have slipped it through the postal slot, and on the long drop down the letter had speared itself into that crack and was trapped by its corner, and there it had stayed through the years.

   I took myself and it out of the letter receiver, and examined it in the light. It had been there a long time. It was greyish and looked like it had almost shrunk. The name and Sydney address, written in a tolerable hand with pen and now-faded ink, were still clearly visible. It had a penny-ha'penny stamp on it.

   I suppose I should have waited, and taken it to the Postmaster when he arrived, but I couldn't resist the temptation. I took the manual stamp-canceller - i.e., the rubber stamp that shows time and date of postage, turned the numbers back to the day I was born, and clearly cancelled the stamp. It was perfect. I then turned the manual stamp to the correct date and time, and sorted the letter into its right bundle along with the others for the Sydney mail.

   Sad to say, I never heard a thing about that letter again. I was wishing that it became one of those newspaper stories which sometimes get a run in the national press about mysterious letters that turn up out of nowhere. If it did, I didn't see it, though I kept my eyes open for a few days.

   Most likely it ended up at the Dead Letter Office, along with those thousands of forlorn missives declaring eternal love and other threats to the intended recipient's equanimity.

   But anyway, I do hope Sarah Holmes was happy with her dolly and its frantic newborn wail.

Monday, May 28, 2012

The Tao of dark chocolate

Just to remind you I'm still around, I thought I'd tease you with this:

Tracey bought them for me. (I think it's because she wants the tin.) She did it because she loves me very much. No, of course I was under no coercion to correct this. It was just a typo!

And because they go together so well, here's a verse from the Tao te Ching:

Please have one.
A skilful traveller leaves no track.
A skilful speaker makes no slip.
A skilful reckoner needs no counting rod.
A skilfully made door requires no bolts, yet it cannot be opened.
A skilful binding has no cords or knots, yet it cannot be untied.

Therefore, the True Person is skilful in assisting people, and abandons nobody;
Is skilful in assisting things, and abandons nothing.
This is called “Following the Inner Light.”

Therefore, the skilful person is the teacher of the person without skill. The person without skill is the material for the skilful person.
If you do not respect the teacher, if you do not care for the material, you are on the road to confusion and your cleverness will not save you.

This is an essential principle.

That's all for now! I shall return, in the fullness of time.

Tuesday, May 22, 2012

Reality bites 5b: the sharp edge bluntly

reality 1 | reality 2 | reality 3 | reality 4 | reality 5a | reality 5b

[to finish the story....maybe.]

How does that fit in with my chess game? In chess, as the end of the game itself approaches, the losing player's king is placed in check, and the final trap is sprung when the king is checked and has nowhere to go. That's it. Checkmate.

There is one slim hope for the losing player, and that is a stalemate, but I won't try to explain that here. Well, I did explain it, but it got too complicated and didn't add anything to this story, so a pointless paragraph is gone, and we're all the better for that.

In a stalemate, no-one wins. It's a Get Out of Jail Free card for the player who was going to lose. (Ah, sorry – I've just Monopolised my chess game....)

In my game, there will be no stalemate. Mr C won't fall for it. I may evade his attack for as long as I can, but a stalemate won't happen. I know this because of the signs that are constantly increasing in number. The return of seizures, the headaches, loss of balance and increased difficulty in walking and swallowing, the strange, apparently random tremors in other parts of my body when I'm sitting or lying down; the increasing failure to remember something that was in my mind a minute ago, whether a word or an idea. Some of these symptoms of accelerated tumour activity are not completely new, but the permutations and combinations tells their own story.

It seems the king is rapidly getting boxed in.

♖     ♖     ♖     ♖     ♖

In a real game, the losing player will see defeat coming, shake hands with the opponent, and resign the game before having to play it out to an inevitable and perhaps humiliating conclusion.

Mr C doesn't like that ending. He may play a mean game of chess, but he only seeks growth at the expense of dependency, and the great irony is that his win is his own death. He will refuse to accept the resignation of his host and he will demand that the game be played out to the bitter end.

It may well be that he's more subtle than a mere biological cell-cloning program, and is capable of tiny mutations that render yesterday's treatments ineffective, or less effective than they were. His only intelligence is to find ways past the barriers that contain him and his influence. Don't be fooled; he may well be better at that game than many give him credit for, and this means researchers can be trapped in relying on outdated remedies or approaches and faith in faulty data. But that too is another story and takes me away from this one.

Here's the blunt bit. There is no honorable resignation for me. Our society, for all its multiplicity of reasons, some logical and some idiotic, decrees that the game must be played out to the last gasp. It allows no right for the player to decide just when the game should end, and thus, on grounds of higher purpose, denies the last shred of dignity in the process. And this is specially true in the sequence of events in dying from brain cancer, or other neurological calamities for the organism, where the invasion is into the core and very centre of our being. We are no longer who we were.

I've always accepted that life, by its very nature, is not fair. I go along with that. But opposed to what you might think I'm saying, life has been unfair in a good way for me, compared with the lives of so many on this planet. In the natural world, fairness is not an issue; for humans, fairness is a rather simplistic idea constructed by the mind, and exists only there. If you believe in fairness or unfairness in such cases, then you have the sticky moral question of explaining why they happen – and most of the answers I've seen to that question are far from convincing. In fact, I'll go so far as to say they usually insult my intelligence.

So to me there is a terrible cruelty, with no redeeming feature, in cloaking the right to a dignified ending to the game in platitudes, specious arguments and blind dogma. None, including bishops and those new knights of the realm, our politicians, have any right to impose this nonsense upon those who do not accept their views. They play their games with our lives; but not content with that, with our deaths as well.

This didn't end up quite as you expected, did it? Me neither.

Reality bites 5a: the sharp edge bluntly

I was about to post a complete version of the final episode of this series when I saw on the ABC [Australia] news a remarkable story about brain tumour survival – remarkable on a number of levels.

But one thing the story doesn't make clear is that the apparent success of this surgery depended on a number of things, the main one being that the tumour successfully removed from this twin's brain was clearly one of the less aggressive types.

Brain tumours range in degree of deadliness from benign to the Glioblastoma Multiforme that I and many like me have, graded at Type 4 of four, that being the highest grade of the nastiest type and most difficult to deal with.

The twin brothers in this story
It seems from this TV news story that once a brain tumour is detected, it just has to be removed, and the problem is gone. That simply isn't the case, but the story no doubt creates a mistaken impression about brain tumours in the minds of many, and I feel the need to correct it before going on. It's rarely this simple.

This little explanation tips my final part of my chess game with Mr C over the edge in terms of length, so I've broken it into two and will post the other part later. I know only too well the concept of reading overload because I've often experienced it myself.

The story continues.

♞     ♘     ♞     ♘     ♞

I've written about our Avastin encounter many times on this blog, and don't want to go over old ground. But I also know that the contents of an unfamiliar blog can be a mystery, and mine's even more a lucky dip than most.

All I'll say about it is that after giving the matter a lot of thought, we chose Avastin as one last possibility of holding off the inevitable for a bit longer. By mid-2010 things had got a bit desperate, so I started a course of intravenous chemotherapy. For the first time I sat in one of the chairs beside so many others at Oncology, to have those hateful chemicals pumped into my body.

For the first time too, the hair over my entire body started falling out; something that didn't happen with oral chemo earlier in the year. High doses of steroids were added to the cocktail of drugs I was on.

Temporarily, things improved. Tracey and I were married in July 2010. It just seemed right after all those years when it didn't really matter to us. We wanted to make the most of the better quality of life, but it didn't last long. A serious physical slide looked certain to take me out quickly.

There's an interesting story as to why we look so long to decide to try Avastin, given that we knew about it for the whole time since diagnosis, but I won't go into that now, much as I'd like to. For the moment I'll just say that medical professionals have good reasons to be reluctant to recommend Avastin; reasons that may or may not be related to its therapeutic effectiveness.

I took that first Avastin infusion in September 2010, nine months after diagnosis of the tumor. The best advice was that it should be done once a month, in conjunction with continued chemotherapy.

The immediate results were remarkable. An MRI showed great reduction of the brain inflammation that contributes greatly to seizure strength and frequency, and they stopped altogether. The tumour itself, denied much of its nutrient, seemed stalled in its growth. Almost overnight, I could walk quite freely again. My right arm, though wasted, responded slowly to physiotherapy, and my fingers started to cooperate with my brain.

Benefits against cost were strongly in favour of the choice we had made.

It was only then that I began this blog, on 30 September 2010. I felt the need to tell tales of my childhood that I had never shared with my children, thoughts that had been enriched and informed by a process I wouldn't wish on anyone, and to start to document, in the clumsy way that I do, the story of how the medical journey might go from that point on.

"From that point on" is this end game, which appears to be coming to its conclusion at an increasing pace. After twenty months of Avastin, physical costs have almost caught up with benefits of the treatment, or so it seems. No-one can be sure. An active life has given me a strong constitution, so there's little point in speculating on where the balance lies. There are too many variables.

But in my chess match with Mr C, the variables are whittling down, as they always do in the chess end game, when most of the last pieces come off the board.

We gave up on chemotherapy linked with Avastin after just a couple of months, because there was no evidence in the medical results that it was playing any role in the extension of time offered by Avastin. The chemotherapy itself became a negative factor, so we started the Avastin infusions on their own, and that is the present state of play; at three-weekly intervals, with no chemotherapy for sixteen months.

How does that fit in with my chess game? No, I haven't lost the plot. Not quite, anyway. Don't go too far away now.


Saturday, May 19, 2012

Reality bites 4: end game musing

Writing about the end game is turning out harder than I expected. In chess it's often a thing of beauty and subtlety if the players are well matched. But this is not a chess lesson, and it turns out that I can only write about my end game, where the players are poorly matched.

My opponent has never lost, so it's a bit daunting.

He's never on for a long game. A quick cornering, checking with only one option, and then sliding any piece in for checkmate, and it's over. He's got a busy schedule and a rapidly increasing number to play – men, women, and children. A steep increase in the number of malignant brain tumours in the young is the most sinister statistic of our time.

So Mr C doesn't want to waste effort on an ageing white male who, statistically, has 10 to 20 years to go before turning up his toes by acquiring some other unpleasant illness or condition.

I turn out to be a bit more obstinate than normal, dodging and weaving one square at a time and the white queen constantly getting in the way by keen foresight and some annoying blocking tactic. But in this end game, Mr C is steadily advancing a pawn or two when he can, while my Queen's fighting off his big guns.

The brain tumour is the great menace for people like me, but other conditions, acting like those pawns on their way to being turned into queens, can do the job just as well. A clot which builds in the leg can break away and be carried in the bloodstream to one of the vital organs, including the brain itself, and it's goodnight nurse if that happens – or worse, if it's not quite goodnight but some hideous state of twilight existence with no quality of life.

He had me in check twice, and in a bad spot on each occasion, and getting out cost me plenty.

I also had him in check a couple of times, though that was more annoying than anything else for him. The surgery to remove what was possible of the tumour in the first instance, that was good; but a GBM tumour can't be eradicated because it's never discovered until it's wormed its way through to places it can't be checked, let alone checkmated.

Oral chemotherapy and radiotherapy together were given a go; I think the radiotherapy helped but doubt the chemotherapy's usefulness in my case. I loathed its side-effects, which are still with me today. Radiotherapy also has its side-effects.

Mr C got out of that one quickly and steroids checked him once more for a couple of months; effective in one way but creating a permanent dependency. Clexane to treat serious clots produced side-effects. Focal seizures increased as motor centres were attacked. Drugs to treat seizures were increased, with more side-effects. My right arm stopped working, producing muscle wastage. When we went out, I was in a wheelchair.

One of the things about chess is that checkmate can occur at any stage of the game, even when you have every one of your men* on the board. That wasn't the case here. Mr C was taking every pawn and piece in sight, and it was tempting to give up at that point and bow to the inevitable, as we had run out of effective conventional tactics.

We'd done what we could but had one last thing to try. It couldn't win us the game, but it might extend it into a weird form of stalemate in which buying time might give us something worth having.

I have to stop for now.

* I can't think of a collective word for the pawns and pieces on a chessboard, let alone a gender-neutral one – can you?

Thursday, May 10, 2012

Reality bites 3: playing chess with Mr Cheat

As a battle of minds between two opponents, there is no game in my experience of the world quite like chess. If you have never played chess, or don't like it, or constantly get your tail whupped no matter who you play, don't worry – this isn't a chess lesson. I've been beaten by too many players of indifferent quality to attempt that – not that you want one anyway.

What occurs to me is that a chess game has its parallels to the way cancer plays its game, but with one huge difference. Cancer cheats at every opportunity. Mr C sneaks pawns back on the board when you're distracted, or with sleight of hand substitutes a lost bishop for one of his pawns.

It's like this.  When you set up a game of chess, you have a King that needs protecting at all costs. He can't even be captured and removed from the board till the game's over.

You'd expect him to be the most powerful, hardest-hitting piece on the board, but he's not. He's a lousy fighter and can usually go only one square at any one move. 

He's pretty useless really, but the game's all about keeping him alive. The game ends when he's so boxed in that he's trapped. Check turns into checkmate. Game over.

That's me, you see. The whole game centres on me. Playing against Mr Cancer, I am King, which, as you can see, isn't saying much really. The King's a wimp.

There's my army. Eight pawns forming a defensive line at the front to begin with; they are my infantry, totally expendable. They usually move just one square at a time, forward only. There's no retreat for them and they'll have to go over the top soon in hand to hand combat or face the lances of enemy knights. But used well, they can win a game for me. A normal game, that is.

I've got two bishops. They're true to form in that they stick to their colour, by which I mean that if a bishop starts on a white square, he can only move diagonally in clear space on white squares. If starting on black, he never leaves black squares.

Working together, they can control the game in my favour. Church leaders everywhere know the value of sticking together no matter what. If I lose one, I lose more than half the power of either, as together their power is greater than the sum of their parts.

I've got two knights – formidable fighters because they can hurdle obstacles, like pawns and pieces. They never jump straight, so my warriors are constantly in danger from sneak attack. They have no morals and work well with bishops, and can threaten several pieces at once.

So much for chivalry. It's not nice to be forked by a knight.

On each end-square are my castles. I don't know whether it's cooler to call them rooks, but as kids we called them castles so I'll stick with that. They move only straight ahead or to the side. They're the big guns that are best used nearer the end, as they need lots of space to move, and the board is too cluttered for that at the start.

Who could I have forgotten? There's one more. Oh, the Queen!

I'm joking, of course – who could forget her? She's the one I build most strategies around. She moves in any direction, given space, and has the combined power of bishops and castles. She protects the lame old King as no other piece of assurance can. These days, it all revolves around her.

I could sacrifice my Queen to win a real game if I'm up against a careless player, but not the game against Mr C. Lose my Queen against him? I'd die first. Or very quickly afterwards.

There's not much chance that I can win the game we two play, but Queenie and I, we can use all our men and our combined wits to string the game out as long as possible.

Where's this heading? Well, when you first get diagnosed with cancer, the game starts. It's a life and death game, so not quite like playing against your sibling, or fooling round with some computer game. Your life is on the line – so it's worth thinking about how you'll play it.

When the game begins, you are probably at the strongest you'll be from here on. Other parts of your body remain sound, functioning well. You have your armoury intact - for the moment at least.

What makes the difference now is most likely your strategy.  There are three phases of the battle against Mr C, just like in chess – the opening, the middle, and the end game. 

If there is such a thing as chance in chess, it's probably only in who goes first, because that first move will dictate to an extent the direction of the game.

But against Mr C, no. He always gets first go. The moment you get your diagnosis, he's already made his first move – probably long before you knew you were in the game. You don't get to toss a coin. You're in. It tends to concentrate your mind, as the old saying about the prospect of hanging goes.

Of course, there are other variables in chess as well as in the cancer game. In chess, it may be whether you've had a bad [or too good!] night before the game, the quality and style of your opponent compared with yours, and audience participation. In cancer, it's the type of cancer, your age and sex, your attitude and your support team, both personal and medical.

In chess, after that first move, the weak player will be on the defensive, staying close to their end of the board. In cancer, it's the doubt that creates weakness. The options are on the table – and there always are options – and you have to choose which way to go.

Opening gambits
The good chess player will use the opening moves to get the right pieces out into strategic places on the no-man's-land in the middle. The cancer players better get theirs sorted out and ready for action, and not waste too much time mucking about. The more time you sit doing nothing, the stronger your cancer gets. Research it, listen to those you reckon you can trust, and then make your move decisively. Have no regrets. No matter what the outcome, you did what you thought was best based on the evidence and advice available.

Then, you're into the middle game. That's the game of attrition. You willingly sacrifice pawns and pieces to take something off the board belonging to your opponent that you feel has higher value than what you surrendered. You play a forcing game when you can; i.e., you make the move that forces your opponent to dance to your tune. You flummox them by taking their knight in exchange for yours. The knights may be of equal value in theory, but you've upset their strategy, or so you hope.

At the clinic against Mr C, you take the initiative as well. This is probably the part of that game where you hit him with radiotherapy, chemotherapy – all that nasty stuff. This is your personal war of attrition. You're damaging the healthy parts of your body deliberately in exchange for what you hope is net gain.

If it's a tumour like mine, you're buying time, or trying to. In other cancer cases, the prize may be far richer. So do what you must. The alternative is to do nothing, in which case it will be a short game.

Mr C, as I said, plays a mean chess game. He loves the sneakier moves; en passant, where his pawn suddenly changes lane and knifes one of yours in the chest; or castling, where vital pieces are allowed to switch positions. 

That's how it can be with cancer. Mr C stretches the rules or breaks them when you don't expect it. He kicks your shins under the table and takes two goes at one time. There's no umpire to appeal to. You just play on.

Approaching end game
So by the end of the middle game, the trench warfare is over and the battlefield is strewn with victims now lined up beside the board. You count your losses.

In my case, it's a bit grim. I played fair, dammit, but he has cheated all along. I've gone to the bathroom and come back to find half my pawns are missing. My knights are skewered and my bishops have done a deal with him and have gone into hiding in the Vatican. A castle that never entered the fray is now sitting beside the board, the shock victim of his knight fork.

He hasn't escaped injury, but he's strong. He has nearly all his pawns now as well.... What? Cheating mongrel! He just grins and says they were lying low. They're jostling for position. I know what they're up to, but can I stop them? He has some very powerful pieces to defend them as they march towards me. I, wimpy old King.

I'm staring down the barrel but it's not over yet. The most elegant part of the game of chess has arrived – the end game, which is a different game altogether from the smash and grab raids we've just been through.

I have a castle and a few pawns. Most importantly, I have my queen.  

Now give me a little time, and I'll tell you a bit about the end game.

Continued to final part.

Wednesday, May 9, 2012

Interlude: things that matter

On 2 December 2011, I wrote a special posting about a remarkable man, who, as is usually the case with remarkable people, don't see themselves as particularly special – just dealing with the challenges life hurls at humanity. In particular, when "challenge" vastly understates what's happening.

He responded to that posting just yesterday, to which I suspended all other operations and wrote a reply this morning. You don't ignore your brother-in-arms because you're too busy or feeling too lethargic.

Responses to a posting from many months ago are likely to be buried under the internet mound in the blog graveyard, and don't have a chance of being noticed by most people, even though they may be very interested in what's happening with people like us. For that reason, I'm pulling this one to the top of the mount and drawing your attention to the posting, Glenn's response and mine. 

"Good news", in cases such as these is always tempered by subsequent developments. Good news remains good news, but things don't stay the same. 

Still, we appreciate the joys when they arrive.


Friday, May 4, 2012

Reality bites 2: grandpa's magic thighbone and the cancer game

I've always loved games. Individual games, team games, it makes no difference.

   I'm sure there are some people who claim they hate games, but they don't; they just mean that the games they play mightn't be recognised as such. We all play games.

   In the great Indian epic, the Mahabharata, master gambler Shakuni plays dice on behalf of his family against our heroes, the Pandavas, the prize being the kingdom both families claim as rightfully theirs.

   It's the classic struggle between good and evil, the identical theme to that of all modern epics of this genre. Dr Who, Star Wars, Harry Potter, Lord of the Rings – we see them on the big screen courtesy of movie-makers with vast amounts of investible cash, translated from text invisible to 90% of humanity.

   Shakuni, the bad guy, has persuaded the demon of foul play to enter the dice, (made from his grandfather's thigh-bone if I recall correctly), so he and the hundred evil brothers cannot lose this contest. Amazingly, our hero Yudhishtira must play the game on behalf of his family – and therefore for the cause of universal goodness and righteousness – in spite of knowing for certain that the dice is loaded, that he will inevitably lose this contest, and have to win it all back again another way.

   "There is only the game," says Shakuni, "and it must be played out." Yudhishtira is a kshatriya, a warrior, and because honour is all, a warrior cannot under any circumstances refuse a challenge. So he plays the game, and all is lost, including his freedom and that of his four brothers and their adorable fearless wife Draupadi. Yes, you read "wife" [singular] correctly – but I'm not here to tell you this story. It just illustrates my main point.

   There is no such thing as chance. Shakuni knew it well, and though he may have had help to win using magical dice made from his granddaddy's thighbone, the storyteller got it right. There is only the game.

   Einstein said the same thing in his own style, and when I read this as a thirty-year-old who clearly knew better than that old fogey Einstein (because I was thirty and he would have been a hundred then, were he still around), I was at the time greatly disappointed in him.

"God does not play dice."

   That's what he said. I was disappointed because I knew the power of this observation in the hands of countless blinkered theologians; its power to back up fundamentally stupid dogma of all sorts when they didn't have a clue what he was on about – rather like me at that time anyway. Not a blind clue that Einstein's vision of God wasn't that of a puppet-master but something vaster than the universe itself, which at least we now know isn't anything like what we can imagine. Much larger even than space, time, nothingness and any other dimension upon which we may speculate.

   I was disappointed because I thought at the time that Einstein was playing games with religion – but of course I was wrong. How could he, as a product of his time and society, express things in any other way?

   This all seems like a huge digression from my story, but nothing happens by chance you see, so it will all come together, if I have the time. Time: that's one of the disadvantages of living in space-time and having to use sensory-intellectual consciousness and those slippery little devils: words. Finitude within infinity.

   It's so easy, and comforting, to accept the notion of chance. When I play or watch games, I have to believe in it, temporarily at least, or where would the fun be? Chance actually is nothing more than not knowing enough about a set of circumstances to be able to predict the outcome.

   If we could know the result, we'd never bother to play, except maybe for money. Then it's not a game of chance; it's a certainty. If we never played anything, we wouldn't be human.

   I wanted to tell you here about the game of Yahtzee, and how it does or doesn't relate to my story, but I haven't the time or the space. That's a pity, because I think you would like it, if you've managed to stick with me so far and are still interested. Let it go. And I wanted to use cricket as an analogy for some things relevant to this ramble, but... same problem – except that I see now I have covered cricket from a different angle in another piece. It's not all that bad, now I read it again [having forgotten I wrote it]. Let cricket go as well.

   ...which leaves chess, which I also referred to in that story.  Chess and cancer, those are the games I'm on about, and I'll get there. I will, because now I have clear as a bell in my mind how this story is going to play out. This clarity from go to whoa is rare for me, as long as I stick to the rules of the game. Maybe I will, maybe not. You just have to... take your chances.

   And this looks like a good place to stop, though I intended to be much further advanced. If I'm writing, and a man comes to the door who doesn't look like the parcel man and has PORLOCK on his van or shirt pocket, shoot him. He once before wrecked the completion of what was going to be one of the best poems in history, so no-one will blame you. It would, after all, be inevitable, and you might give it a go as a defence at your trial.


Thursday, May 3, 2012

Reality bites 1: a half-remembered chat

It's weird. Today, I don't know where to start.

Usually, it's no problem. I just begin writing, but this time it's difficult. There are so many interlocking things I want to say without trying your patience or stamina too much. I've been lying in bed awake in the 5 am darkness wrestling with this, and I need to write something or I can't get it out of my head – which means I can't sleep. But I need the sleep. Catch 22.

So I'll just start and try to carve this into manageable chunks. OK?

On May Day, Tracey and I were out walking. I'd had a question in my mind for some time.

"Do you think I'm misrepresenting the state of my health on the blog?"

She paused for a little while before answering, but the answer was clear enough.

The reason I asked her was that I have had quite a few of what were to me odd reactions from people, some written and some in person, and so had Tracey.
"It's great to read that everything's going so well."
"You look fantastic."
"It's incredible that you're cured."
That last one really pulled me up. What sort of tangential universe is one of us living in? Cured? This thing has no cure.

Oh, I know that when friends come to my door they aren't likely to say:
"Man, you look dreadful."
"I see you can't walk straight, or can barely sit yourself down."
"You've got jowls like a prize bulldog."
"You're going to have to get a forklift for that stomach." 
(Well, a couple of my friends might, but that's OK. We go back a long way.)
I've conceded several times in this blog that when I'm settled and comfortable, I can appear to be fine. My brain's probably running on high revs, so it's relatively easy to create an illusion of near-normality. I know too that many people do see things but are polite enough not to point them out, and it's normal to focus on the positive – or, as we often do, talk of other things entirely, which is fine by me. Who wouldn't?

I also know I've been around far longer than some of the estimates that have been given to people or to us, and there are good reasons for this. But it means that in a strange way, it dulls or deletes the expectation in many people that I will drop off the perch shortly or that some sudden event will do it in two minutes, possibly starting right this second.

You see? Neither you nor I can find it in our hearts to process that, but it's right. Dead Wright.

So when Tracey said a clear "Yes" to my question, I can't say I was surprised. It was only confirming what was already in my mind.

"So what am I doing wrong?" I think I already know the answer to this, but I'm interested to hear how she puts it.

"When I read the blog, two things strike me, so they must strike others as well."

"Firstly, on the main part of your blog, it's nearly always upbeat and often funny, and this creates the impression you're always fully on top of things."

"Well," I say a bit defensively, " I take hours to write a few hundred words of any blog posting. I can think about it, change it when it looks too stupid, and patch over the mistakes a bit."

"And," she goes on, "in the other part of the blog, the What's New section where you do a bit of medical reporting, you tend to focus on the positive things and play down the others. I know you mention the negative ones and expect people to read between the lines, but they don't see what I see. You can't expect them to."

"So it doesn't surprise me so much when people meet me in the Supermarket and say how well it all seems to be going. They see you joking and acting just like you always did years ago on FaceBook before all this. A place like FaceBook is where all our local friends and relatives are, and a lot of your overseas friends. There's no lines to read between on FaceBook.

"And you don't go out much, so most people don't see you. You write on the blog that we're out walking, and the picture is we're strolling along like... normal people, doing normal things. But if you weren't holding my arm, you'd have fallen over a dozen times by now."

That's all too true.

"Sometimes I wish you'd do a parallel version of events on the blog," I say to her, "so people could see it from inside my head and also get a more realistic version from your point of view at the same time. But I don't want to impose that on you."

"There would probably be things you mightn't like me to say, either, about what I see and know at this stage of things."

She has a point. I probably wouldn't, and want her to change things, or not say them at all.

I always say she's the control freak. Maybe it's me.

But she's right. I need to tell it like it is. True, some people heavily in denial refuse to see what's there right in front of them no matter what, but most of the time, if you don't give them the whole story, you have to expect it will come back to you in a distorted form.

So, I better balance the scales from here on, especially now that things are changing with much greater speed.

More on what's really happening next time then. It's too late in the day for sugar-coating.

Tuesday, May 1, 2012

Mayday! Mayday!

Tuesday, 1 May 2012.

May Day.

I know, I know. "Mayday!" the distress call, comes from the French, "m'aider" "HELP ME!" but this is different. 

What a fascinating day, historically, is May Day. Look it up on Google; if it interests you enough, there's no point in my repeating its astronomical, astrological, pagan, sociological and political significance over time.

Mostly it's remembered these days for just a couple of reasons.

Maypole dancing. Source
One is that as it's the traditional Spring awakening in the northern hemisphere, Maypole dancing day, where homage is given to male virility (what else?) by having virgins dance around the pole – the bigger, the better, naturally. For the boys, rather gratifying in its symbolism, or optimistic perhaps. 

Not that it was all so innocent. May Day orgy-asm has a long history, and a long way from chastity ­– Dionysian rites, snake worshipping....

It's funny that my name derives from Dionysus, God of revelry and master of rites similar to those of the less philosophically aware and more earthy of the Tantrikas of Hinduism, especially the New Age Western devotees. No wonder the ancient Christians quickly grabbed May Day and made it respectable, regarding it as unsafe to leave in the licentious hands of Wiccans and animists and other Satanic spawn. Sex was replaced by its more slightly more sober form, morris dancing; especially down there in Kent, where we lived in 1980. Whitstable was just a stone's throw away.

So were the morris dancers, but I resisted the temptation.

Perhaps I'm being unduly harsh, as I am on line-dancers in Tamworth during the Country Music Festival, but to me, nothing kills a good old orgy deader than morris dancing. The neo-pagans are dragging it back though, with the impetus of the age of Aquarius, abetted these days by fizzy popcorn-coloured but deceptively alcoholic drinks to get the virgins in a good mood, and the horrors of politics.

By Dionysus, we're winning.

But politics, that sets a new tone. The Mayday celebrations remind us of the glories of revolution, vast military parades, with ICBMs apparently in the hands of the proletariat (I'm doubtful) ready to purge the world of the evils of power-drunk generals and Halliburton and create the socialist utopia at last.

The sonorous intoning of the Internationale rings in our ears, but there are six verses, which is too many. The poem, piggy-backed on to those of the French Revolution, seems like practically the whole of Das Kapital, though I marvel at the ability of someone who can reduce to a single page the entire socialist doctrine from Marx via Mao and Uncle Ho to Kosygin.

Still, it's five verses too many, even for a song a great revolutionary fervour.

But who can go past the Marseillaise for whipping up a storm and convincing the gang to top a few worthless powdered-wig aristocrats?

Aux armes, citoyens,
Formez vos bataillons,
Marchons, marchons 
 Qu'un sang impur
Abreuve nos sillons !

Or, to put it colloquially, get a paling off the fence, mates, bunch up, leg it to the toffs' fancy pads, and let's cut 'em up as blood and bone for the roses.

Something like that.