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Link to click to read cancer blog which is part of the literary miscellany THIS IS A PICTURE OF YOUR GOD: A HUGH COOK READER


One of a suite of blog entries about the aftermath of chemotherapy and radiation therapy, including brain damage and eyesight damage; a survivor's account of the aftermath of cns lymphoma, non-Hodgkin's lymphoma of the large B-cell variety, in the author's case cancer of the brain and the spinal cord.

Part of

        I'm flying high on drugs, and I'm loving it. I feel better than I've felt for quite a long time now. And I'm going through a great creative period, with an ideal constellation of conditions to support me in creative enterprise.
        First, I have a deadline. Could be in hospital soon. Yeah, and could be dead, that's deadline pressure in a very persuasive mode of operation.
        And, second, death, that gives me a topic, a subject matter. My death, your death (yes, sorry about this, but look far enough ahead in the calendar and one of those dates is yours), and the general weirdness of the world we've structured to fill the time between when we're born and when we cark it.
        Great topics, an even greater deadline, most persuasive deadline I've ever had in my life, and, third, my wonderful drug, my magic pill.
        Or, more exactly, four magic pills a day, eight weighing in at four milligrams for a daily total of sixteen milligrams, more, if I remember correctly, than I've ever taken in one day in my entire junkie life.
        This is the honeymoon period, of course. Later, the bad stuff kicks in. Internal bleeding, puffy steroid-users face, weakness in the thighs as the muscles there collapse, and intense irritation from sleeplessness. Don't need to sleep, which is fine, but can't sleep, which is not. Eventually you get to the point where you want to switch off, but you can't, and by that time you are no longer riding the drug. Rather, it is riding you.
        It was a relief, last year, to taper off the drug and finish. But I was tempted to keep my stash of drugs. A helper to have at hand. But it had been my plan to take an air trip, and it wouldn't have been good to carry this stuff through customs unless I still had a legitimate medical excuse for using them. And if my parents' grandchildren were to get their hands on them, which is a conceivable disaster, we could be into sick kid territory, or worse. So I tossed them out.
        Yes, but it was a temptation not to do so, a temptation to keep them, to have them around. But I told myself I'd had my junkie ride, and it did get rough toward the end, and I needed a little help from a physiotherapist to properly restructure my body afterwards, and I figured that, rationally, one trip down pill-popping highway was enough for a lifetime.
        But I have to confess it was a happy moment when I fronted up to the pharmacy and they greeted me by name and put my magic drug into my hands.
        And it is a magic drug. Pharmaceuticals, they're one of the big payoffs for living in the modern world.
        Why do I think it's a magic drug? Because, last year, it provided me with a miracle. In the matter of only a few days, it rescued me from partial paralysis. My brain was swelling, the pressure building up as the brain cancer strove for hegemony, and the left side of my body was shutting down, and I could no longer coordinate my hands for touch-typing, and then, terrifyingly, on one impossible and unscripted occasion, I lost control of the velocity of my own voice, which was unexpected and, quite frankly, terrifying.
        The dex dug me out of that hole, and now I'm hoping it will reverse the symptoms of vision loss which seemed, in the days just before I started taking the dex, to be gathering momentum in a manner which was terrifying rather than merely disconcerting.
        So this brings me to the fourth good point of my situation: by taking the drug, twice a day, once on top of breakfast and once on top of lunch, I have the feeling that I'm doing something positive.
        Things I've never done and probably never will do before I die: drink tequila, take LSD, chew down peyote, snort cocaine, sniff petrol, sniff up glue and mainline heroin. (I have, however, had the privilege of mainlining a radioactive isotope of gallium, though I wouldn't really try to seriously sell you on the notion of experimenting with this. Yeah, and I had a hit of intravenous morphine, but I was under a general anesthetic at the time, so couldn't properly appreciate the effect.)
        But while I've missed out on all those opportunities, and have missed out, too, on the drugs which have been in the news during the last year or so in which I have been in New Zealand — party pills, ecstasy and methamphetamine — I have had my dex, had it once, big time, months of it, and now I've got it back again.
        When I was four days into my present drug trip, four days into what may well turn out to be a very extended drug trip (last year I was on the stuff for months) my mother diagnosed my condition as, to quote her exact words, "extroverted, volatile, talky and jokey".
        And this is the quiet Hugh she's talking about, the mild-mannered introvert who can sit quietly by himself for hours at a time, staring at a concrete wall, needing no stimulation other than the exploding planets and thermonuclear spectacles so readily available inside the privacy of his own head.
        The drug is a personality change, and this change speaks out loud and clear to my mother.
        She asks me:
        "You still realize the seriousness of your condition?"
        Yes, I realize. I live on a planet which has only one sun, and it's only rated for a limited period. And, on top of that, I'm living in Devonport, which is part of the area centered on the city of Auckland, and the whole area is volcanic, dotted with cute little volcanic cones which aren't quite so cute when you realize that the civil defense people have plans for the next volcano, which could be coming up any time now, and could mean the evacuation of half a million people or so.
        (Last eruption was just a little offshore from the city, about seven hundred years ago, giving us our micro-miniature version of Mount Fuji out in the sea, an island known as Rangitoto, the whole thing one big volcanic cone covered with loose volcanic rock.)
        And, if that wasn't enough, we may be on the edge of an avian flu pandemic, three percent of the population dead, perhaps, with four million people in the country that computes as way too many dead.
        And, on top of that, I know we all sat in the same room together and listened to my radiation oncologist spell it out to us in painful detail, because we had made it clear that it was the detail that we wanted.
        With this kind of cancer, non-Hodgkin's lymphoma, the statistical reality is that the balance of probabilities is that it will come back.
        And, if it does come back, the probability is that you die.
        You can shoot for a second remission, try another round of chemotherapy and see how it goes, but, in general, it is not possible to achieve a second remission.
        We sat in that room together and, at our insistence, the radiation oncologist laid it out on the line. The odds are that it comes back and the odds are, then, that you die.
        Having achieved remission, I knew it wasn't necessarily over. It might be. But, realistically, my chances of being alive, five years out, were forty percent. My chances of being dead, sixty.
        We all know that, so there's no big discussion about it. What is there to discuss?
        Theoretically, I don't know for certain that the cancer has come back. Theoretically, I still need to have tests to diagnose that. But, given what has been happening, and given my medical history, it seems difficult to arrive at any other conclusion.
        The odds are stacked against me, and I know it.
        Which is not to say that survival is impossible.
        The plane comes burning down, a hundred people die, statistically it's curtains, but the crash might still have at least one survivor, and you might be that one.
        I'm aware of the gravity of the situation, haven't become unstuck from reality, and won't, not seriously, not on this drug.
        And, if my mother were to read my praise poem for Saddam Hussein, which I offer to show her, she'd understand that, for certain.
        But she refuses the offer.
        Saddam, he's a terrible man, and she doesn't want to read about him.
        My mother's a little sensitive. After she heard on the news that Jacques Chirac, President of France, wants to demonstrate the glories of French civilization by nuking a few enemy population centers, she asked my father to turn off the radio. Didn't like this world, wanted to go live in another.
        (At least she can't blame me for inventing Chirac. He didn't come slurching out of my imagination, eager to walk across a carpet of radioactive babies to enthrone himself in his niche in history.)
        I agree with my mother. Saddam is indeed a terrible man. And, if they can't find an executioner when the day comes, yes, though I'm theoretically opposed to capital punishment, I'd do the job myself for ten bucks (plus air fare, of course, and hotel accommodation, and a life insurance policy, and this would have to be one of the better ones) and I'd sleep well afterwards (provided that I'd tapered off the dex by then).
        (Never killed anyone before. Though there was a time, when I was working a graveyard shift in the all-night coffee bar in a certain international hotel in Auckland and was very, very tempted. I mean, very.)
        So, yeah, Saddam should die, and you certainly won't find me voting for him to play Santa Claus.
        That said, when you know you might be dying, you look around for role models. The Romans, who were big on dying, enjoyed gladiatorial games, the early form of pro wrestling, a sporting event in which things, as a rule, weren't rigged, and people died for real.
        Basically, they went along to watch for cheap kicks. Not much to watch on TV back then, the Simpsons were still two thousand years in the future and music was centuries away from going electronic.
        So watching people die was fun.
        That said, the Romans had an official excuse for it, a moral out to placate those with ethical misgivings. By watching people die you could learn about death, and, since you yourself were destined to die, that was a lesson you needed to learn.
        One of the Romans, I think Seneca, a Stoic, had something to say about death. A couple of things, if I remember correctly from a piece of reading I skimmed through, lightly, many years ago.
        The Stoics are the "tough it out" guys in the philosophy department, and it is Seneca, I think, who says, taking the tough it out line, "Ignore your pain. Either it will go away or you will."
        (Now, if you had that idea today, and wanted to put it on the marketplace, exactly how many major manufacturers do you think you'd have lining up to take advantage of the product placement opportunities?)
        And it's Seneca, I think, who also says something like, "As we grow older, we discover that we must not only learn how to live. We must also learn how to die."
        I thought of that more than once last year, when I was confronting the possibility of my death.
        Thinking of a Roman model, a Roman mode of thought, of the Stoic tradition, two thousand years old or so, because we have nothing modern to substitute for it.
        The fonts I use the most are serif fonts, the letters hooked with jagged little edges which catch the eye and make it easier to read long slabs of text.
        The Romans invented the serif, I guess about two thousand years ago or so, and what they invented way back then is part of the setup that comes with the latest computer you buy this week in the electronics shop.
        Two thousand years of history, and we haven't improved on what they invented, not significantly, not in this arena.
        Theirs was, in many ways, a monstrous civilization, but some things they knew how to do. They helped design the fonts we use right down to this very day, and they found a workable approach to death, which is to face up to the fact that is dying is inevitable, so there's really no point in whimpering about it.
        Which is a script to follow. And, in this situation, I need a script, and that's the only one I have.
        In the Middle Ages, they worked some more on the art of dying, and produced manuals on how to do it. But I haven't seen any of those manuals in the bookshops lately. I have a suspicion they're out of print.
        A search of Microsoft's Encarta encyclopedia throws up just one single entry for "ars moriendi", the art of dying, a piece with the title "illustration", where I find a piece about block books which says "Many carried a religious message; the Biblia Pauperum (Paupers´ Bible) and Ars Moriendi (Art of Dying) are famous examples."
        And that, it seems, is all Microsoft has to say about the art of dying. Maybe Bill Gates bought himself a cure, doesn't think he's going to need the art.
        One entry for "ars moriendi". Twenty-two for "hip-hop". Is this diagnostic or is it what? Type in "wealth" and, to see this list, you need to start scrolling. "Fashion"? Scroll again. "Interior decoration"? Yeah, once again, you need to scroll down.
        In our culture, interior decoration outranks the art of dying. In proof of this, there are home beautiful magazines sitting in the laid-back waiting room in the oncology department, the room where the very relaxed people, many of them very seriously deep into the business of dying, sit around drinking their free tea and coffee.
        But there are no magazines on dying.
        We don't have them. Those glossy coffee table mags, "Corpses and How to Become One", "Embalming Your Mother-in-Law and Profiting from the Result", "Home Executions for fun and Profit", "Capital Punishment in Schools — the Payoffs" — those magazines, they're missing. Should exist but don't.
        So, dying, maybe, not necessarily but quite possibly, you're sitting in this very relaxed room (cancer is a relaxing disease, generally no five-minute fail-and-die scenarios here, not like you were in the middle of having a massive heart attack), and, instead of being in the culture of death, you're floating around in this gloss-glitz miasma of fine wines, shiny cars, women with skirts as short as you could imagine, heroes of a celebrity world were nobody is very much older than twenty-three and a half.
        You have no role models.
        The Romans, they're a starting point, but it would be helpful to have a role model who is living now, who is going down, who is facing the big one, locked in, no way out, but finding a way to get from A to B.
        And that is where Saddam comes in handy.
        Wasn't an acolyte of Seneca, this Saddam. Stalin was his role model, the ultimate ruthless rationalist, the totally sane monster, the sadist who enjoyed his executions, who used to sometimes invite people into his office for a final chat, a last little taste of face time before he sent them off to die.
        Saddam wasn't an acolyte of Seneca, but somewhere along the line he has, obviously, learnt how to die. And that makes him a role model.
        You don't like my choice of model? Who would you suggest instead? Michael Jackson? Madonna?
        No, he's not admirable, this Saddam. But be honest. In his situation, would you handle it even half as well? Would you hang together, be yourself, maintain your core in the middle of the melt-down of your life?
        I have no wish to be that monster but there is something in the core of that monster which I would like to be mine.
        My mother, anxious that I may be in the process of losing my grip on reality, asks me if I realize the seriousness of my situation.
        And I answer, as indicated above, that I realize just how bad things are.
        "If you doubt that, you can read my praise poem for Saddam Hussein."
        She doesn't. Declines the opportunity. But here it is. If your Internet connection is within walking distance of his cell, you're welcome to print it out and pass it on to him.


Saddam is guilty.
The acid baths were real.
Terror knows no greater reign than this.
From what we see we know his death is rightful
And one man on this planet knows how to die.
He's going down to doom and surely knows it,
Squeezed out before but this time dies for certain.
A cockroach beneath the deadweight of the jackboot,
He panics not and never chooses flinching.
His barbed wire soul can handle this alone,
Declines to yield and does not seek to whimper.
Without a rock he somehow finds his footing,
Steadfast against the planet and the court.
Doom is a death to shout at, minus hankie.
Death is a road to walk with head held high.
After the wars, the tortures and the rapes,
He's passed beyond repentance or redemption.
Sole function, now, to face the court and die.
And be my leader.
Saddam, my man, I'll take you as my angel,
Dark lord of mine for this my darkest path.

        You don't like it? Okay, your death can be in a different mode. Put your favorite Muzak tape on the stereo, have someone start reading you your favorite Pooh Bear story, double the dose of morphine and nod out happy. Do that, and you may win yourself a feature in the glitz-gloss publication I'm toying with the idea of launching, a future entrepreneurial opportunity, perhaps, thousands of millions of people on this planet, every single one of them destined to die, and not one single big-name glitz-glossy to cater for them, "Happy Deaths and Post-Life Opportunities: A Death Glossy for the Prosperous You".
        Could be big news money for me in this, once I've figured out the details of how to set it up.
        Another great idea, and I'm full of them these days, creativity on high crackle and pop. It's well after midnight by now, and breakfast is not all that far away. And, on top of breakfast, there will be more of my dex, my magic dex. Something to live for.
        This is, as I say, the honeymoon period. I recognize that. And, somewhere down the road, there has to be a divorce. This relationship isn't sustainable forever. But my acknowledgment of the seriousness of my situation orients me to the rewards of now: my next bar of chocolate, my next cup of coffee, my next hit of my dex, my magic dex.

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