Saturday, January 28, 2006

Under Surveillance

I'm under surveillance. They're watching me, and it's worse than I thought.

I knew my mother was invigilating me, and, on the basis of her scrutiny, she described me as "manic". Probably, to a stranger, I would pass as normal, but to my mother I'm not the quiet me she knows.

I'm fully aware that I'm a little hyper thanks to the drug I'm taking, the dexamethasone, and that my mood is buoyant, too buoyant in the light of the firing squad I'm facing. But I'm not fussed by that. It's a good ride, while it lasts.

But, quite apart from my mother, other eyes have been watching, and watching closely.

This came out on Friday 27 January when we were in the waiting room at the oncology department at Auckland Hospital. My sister asked if she could raise a question with Dr. Porter, the oncologist we were expecting to see ("we" being me, my sister, my mother and my father, not the whole catastrophe but a lot of us.)

"What question?" I asked.

It turns out that my sister's husband, Alan, a trained nurse who has a certain amount of neurological nursing to his credit, had been watching me during a recent dinner, and had observed a certain "absence" in my face, an absence lasting perhaps two and a half minutes.

Alan wondered if it might be an idea for my sister to talk to Dr. Porter about the possibility that I might have been having, say, an epileptic episode.

No need, I said. And explained. I had been composing a poem, and had wanted to leave the table and go write it down, but had restrained myself, thinking that would have been rude.

"If Dr. Porter wants to know what I was doing," I said, "I'll tell him the truth, which is that I was composing a praise poem for Saddam Hussein."

"I wouldn't do that," said my sister. "If Dr. Porter found out you were writing a praise poem for Saddam Hussein, he'd call in the psychiatrist, and that's the last thing that we need."

She also recommended that if I really had been writing a praise poem for Saddam Hussein (and, yes, I really had) I should make a note of how much dexamethasone I was on at the time. That should be part of the historical record. For the record, it was a daily dose of sixteen milligrams, a higher dose than I've ever been on before.

My name was called at the time set for the appointment, and I found myself facing someone I recognized, a doctor who is definitely Not From Here.

I usually forget names in two and a half minutes, or even less, but this guy I greeted by name, much to his surprise, as we had only met once before in the course of human history, and that one-time meeting had been over a year ago. He complimented me on my good memory for names.

I explained, frankly, that I had been curious, on first meeting him, to know where he came from, and had been thinking of him on and off ever since.

"Where do you think I come from?" he said, inviting me to guess.

"Egypt," I said, declaring my opinion with great confidence on the grounds of his name and his obvious ethnicity.

"Not far from there," he said. "Jerusalem."

An interesting way to explain himself, I thought, giving not the name of a nation state but that of a city. Obviously he's answered this question before. And here he is, totally relaxed and absolutely at his ease, fitting in and speaking impeccable English, but, if you were to conjecture a short story around him, what kind of broken world would your imagination encourage you to create?

The explanation I had been given, "Jerusalem", raised a host of conversational options. My parents' friend Arthur, just back from a trip to India, was at dinner on Thursday night, and his next trip, soon, is going to be a happy jaunt to sunny Iran, a nation the Israelis have been threatening to attack, their aim being to take out the threatened nuclear facility before it swings into action.

But that was not the kind of conversation we were here to have.

Instead, we were here to discuss my firing squad.

I have a visual field defect, and what is to be made of that?

Option one is that the lymphoma is back, and is raising the pressure in the brain, crushing the nerves and compromising my eyesight. If so, the dexamethasone should reverse the symptoms. Such a reversal would indicate that the cause of the new eyesight problems is either the brain cancer, back at work again, or some different disease which is raising the pressure in the brain.

Most probably the brain cancer.

If the brain cancer is fingered as the culprit, they won't be doing any more brain surgery. They don't need another sample. Realistically, in all probability, if it's cancer then it will be the same old central nervous system non-Hodgkin's lymphoma coming back again.

The other option is that the radiation I had may have injured the nerves, causing something which I heard, rightly or wrongly, as "demylination", which I think means a kind of stripping of the nerves.

If the radiation is the cause, this will be indicated by the fact that the use of dexamethasone will not bring about a restoration of my vision.

The bad news is that any such damage done by radiation will be irreversible. The good news is that, in all probability, no further degeneration will result, as the body will by now be in repair mode.

Also, although the radiation causes degeneration, the residual effects of the radiation are not going to kill me dead.

The cancer, on the other hand, if it is the cancer back again, quite possibly will. Possibly? Well, probably. Yes, "probably" is the more accurate word.

"I'm sure you've researched CNS lymphoma to the point where you know far more about it than me," said my doctor, who I will call Dr. Jerusalem.

In the face of his generous courtesy, I confessed that I had abandoned research long ago. I gave up. Too much to know.

He explained, then, that CNS lymphoma almost never escapes from its natural habitat, the brain and spinal cord, out into the wider areas of the body. Consequently, there is no point hunting for clues in places outside the brain and spinal cord.

A magnetic resonance imaging scan is the next logical step. It's been requested. It was requested on January 24, and I will probably have it next week.

Interpreting the result will be a challenge, because my brain has been messed up by chemotherapy and by radiation. Because of the residual effects of the radiation, my brain is constantly changing, and will continue to change, at a rate which is significant for interpreting scans, for perhaps the next ten to fifteen years.

If it is the cancer back again, then treatment will be drugs into the spine.

"The spine?" I said, with some dismay.

I don't like lumbar punctures (spinal taps) and I've had enough of them to have a very firm opinion about how much I don't like them. But Dr. Jerusalem that the only real options are to administer drugs intrathecally (into the theca, the sheath which houses the spinal cord) or directly into the brain.

Because of the brain-blood barrier, there are few drugs which, if introduced into a vein in the arm, can make their way to the brain.

One such drug is methotrexate, which I received in massive doses last year, but this will probably never be used on me again. I've had radiation, and following radiation with a further siege of methotrexate is a course of action which has a high probability of resulting in severe dementia, not years in the future but soon, within six months. Not long at all.

No methotrexate.

Instead, if I do need chemotherapy, they will probably do some surgery and implant a drug-administering device in my spinal area. It will be sealed off from the outside world so there will be no hygiene maintenance problems, no hole going into my body, and, while they can take it out, they would probably leave it there forever.

The thought of surgery doesn't worry me. After steroid injections into each eye, after neurosurgery, after two vitretomies and two cataract operations, I'm at ease with the idea of people working on my body with sharps and bladed instruments.

Surgery is quick and it gets results.

Obviously, then, if the chemotherapy option is going to result in the implantation of a drug-giving device which will deliver its dose in stages until it finally runs out and then just sits there, I'm not going to end up being incarcerated for days at a time in a cancer ward with an intravenous drip hanging out of my arm. Whatever horrors lie ahead, another extended course of the dreaded hospital food is not going to be one of them.

I had been seriously wargaming incarceration strategies, but now those war games were redundant.

At this stage my father piped up. He had a question. At the final meeting we had last year with my radiation oncologist, Dr. Gillian Campbell, she had said, hadn't she, that, if the cancer were to return, treatment would be only palliative. No cure would be possible.

Before Dr. Jerusalem could answer that, I put my oar in. I remembered that meeting clearly, and my recollection was that, while Dr. Campbell did indicate that my survival chances would be slim if the cancer returned, she did not set those chances at zero.

My father thought I had heard it wrong, but Dr. Jerusalem said he rather favored my take on the situation. His manner of delivering this information to my father was diplomatically nuanced, but the message, nevertheless, was clear. Yes, a slim chance of survival, but not a zero chance.

That, however, was something we could talk about later, once the picture was clearer, perhaps in two or three weeks. Meantime, there was no need to rush. I had my dexamethasone, which, in the short term, would do as much for me as anything else.

It's cancer, okay, the leisured disease, the disease you have all the time in the world for, not a massive heart attack in progress, not a bullet wound bleeding you to your death.

So I was right and my father, who never reads online, was wrong.

Thinking back to the final meeting last year with the radiation oncologist, I formed a thesis. My sister broached the subject of my death, saying something like "If the cancer were to return, am I correct in thinking that treatment would only be palliative?"

She was a trained nurse, and, at one time, an oncology nurse, and presumably my father credited that question with expertise. The question (this was my surmise) ended up getting translated into a statement of fact, which he filed away under the file marked "sayings of the nurse oncologist".

But, with all respect to my sister, who has been of great assistance thanks to her professional expertise in the fields of both cancer nursing and counseling, she is still, to me, my little sister.

Everything she says -- sorry if this hits you hard when you read this, sis -- attracts an automatic "little sister" discount. I was born first, so that's the way it works.

When my sister spoke, I heard the question, but the question was a cue for me to tune in to the radiation oncologist and listen to what she said. To listen very carefully. And to take notes.

And my recollection squares with Dr. Jerusalem's take on the situation. Even if the cancer is back, my chances are not zero. If I recall, the words that Dr. Campbell used after giving me the "probably die" message were "but you could still try".

I am the brain-damaged one, and there are times when I get it wrong that. I know that, and do not try to deny it. But there are also times when I get it right, and this is one of them. If it is the cancer coming back, I still do have that narrow window of opportunity to shoot for.

Dr. Jerusalem found out how much dexamethasone I was taking, told me to cut the does by half, down to eight milligrams a day, and wrote me a prescription for more dexamethasone and for the two supplementary drugs that I ended up taking last year to counteract the side effects which I experienced, an acidic stomach and, on top of that, vomiting.

The two drugs were Losec and Maxalon.

And with that, after almost an hour of Dr. Jerusalem's time, we were done. My father thanked Dr. Jerusalem for spending all that time with us, and commented that we always came away feeling we had been granted, generously, all the time we needed to talk through the issues.

My outcome, then, is that radiation damage will be diagnosed, and that I will go on living with my current visual defect, which is doable, given that I can read and type, or that, alternatively, I am diagnosed as having cancer once again, in which case I undergo some surgery in the spinal area then go about my business until I either recover or (more likely) die.

All this to become clearer in the next two to three weeks.

We left oncology and started to thread our way back through the bowels of the hospital campus, the most confusing conglomeration of architectural bafflements on the planet.

My father led us by an underground route which he has come to know well, a route which goes through horror movie corridors which are virtually tunnels, the lighting almost down to zero in some places.

"Are you sure you know where you're going?" said my mother.

My father was totally sure, and with good reason.

Eventually, a twist, a turn, daylight, a road, another entry, an escalator up and then we were at the elevator which would take us down to the start of a new tunnel, a definite tunnel, no way could you legitimately call it a corridor.

"What was it last time that gave you constipation?" said my mother.

Since she asked, I started to answer was we piled into the crowded elevator.

"Last time," I began.

"Not now," said my mother.

I had started to I was going to finish. But she put her hand over my mouth and shut me up. After we got out of the elevator and were heading down the tunnel, I gave her the answer.

"Last time, during chemotherapy, I had an anti-emetic called Zofran, and it has a reputation for causing constipation. And, mother, in an age of avian flu, we do not put our hands over other people's mouths, regardless of the provocation."

We wended our way (in a proper horror movie, most of us could easily have been killed en route) to the carpark building, dropped my sister off at her place at work, then drove to the fish market down by the sea.

At the market, I bought myself some sushi.

"What's that?" she said, pointing at something white on rice.

"Squid," I said.

My mother didn't like the idea of eating raw squid, but, when we got back home, I gave her the piece of sushi which was actually egg, a foodstuff I do not eat.

I decided to have soy sauce with my sushi, and went to fetch one of the tiny little blue saucers into which we pour the soy sauce. But the saucers were not in the cupboard. After doing a slight double-take -- the little saucers should be right there, ready to hand -- I realized that the saucers were not in my parents' house here in the suburb of Devonport, here in New Zealand, but in the other house, the house which I have not set foot in for over a year, the house, which, conceivably, I will never see again in what is left of my living life. The house that, all things going to plan, I would have reached on the morning of Thursday the 26th.

Flying into Narita airport, as per a long-standing fantasy, to arrive early in the morning, then making my way by bus and train to what is my truer home.

At the hospital, my mother asked Dr. Jerusalem what I should tell my wife. But he said, and quite correctly, that this was my judgment call, not his.

With sushi done, I picked up the phone and hit TALK then AUTO and then the number 5. The speed dialer swung into action, and the answer phone twelve hours away by air, the answer phone in the city of Yokohama, picked up and answered.

I left a message on the answer phone, spelling out the options. Option one, radiation damage, with, probably, in that case, no further damage to follow. Option two, cancer. If option two, then death is a possibility. But I am not necessarily going to die. At least, not just yet.

To close up, the praise poem for Saddam Hussein, if you can't find it somewhere in this blog, is in the site, the best link being The title of the poem is SADDAM IS GUILTY and the poem, while it is a genuine praise poem, leaves you in no doubt that the poet believes that "guilty" verdict to be the right one.

Flying High on Drugs

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, "extravert ed, 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 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.

The Consequences of Having Cancer

So what are the consequences of having cancer? Well, to start with, I've started to reach for the soy sauce, a salty condiment which has absolutely none of the health benefits of soy-based products such as tofu and natto ("natto" being, if you don't know, rotten soy beans eaten by some Japanese people, but not by all).

Many years ago, when I was part-time military in New Zealand's peacetime army, I did an advanced medical assistant's training course. Not all that advanced, but we did get to do interesting things such as to go to the morgue and watch an autopsy. And one otherwise unfilled gap in the timetable ended up getting filled by a video on dietary salt.

This video convincingly made the case that moderating your lifetime intake of salt will reduce the risk of having high blood pressure in old age. It convincingly linked salt to high blood pressure, giving the Japanese as an example.

There is too much salt in the Japanese diet, the worst offender being a very popular soup called miso soup, which is absolutely laden with salt, and which some people eat on a daily basis. Although Japanese people tend to live long, part of the problem of high blood pressure in old age seems to be directly attributable to dietary salt.

Freedom fries (or, in traditional British English, "chips", not to be confused with "potato chips") were a regular feature of the messhall diet, much to my pleasure. (I spent two years of my youth living in a student hostel where the food was even one step down from hospital food, which takes quite some doing, and, having survived that experience, I never had any complaints about army food.)

Up until that day, it had always been my habit to load salt onto my fries, but, having made a decision, I didn't.

Bereft of salt, my meals initially seemed a bit tasteless, but, after persisting for some days, I found (truth in advertising) that the flavors of the food started to come through.

I gave up putting salt on my food entirely, used no salt in cooking and shunned soy sauce, which is basically liquid salt.

This most certainly did not result in me being deprived of salt, because the modern diet is saturated with the stuff, and it typically turns up in, amongst other things, bread, which I eat on a daily basis, often in large quantities.

During my first encounter with cancer, I cleaved to a healthy diet and maintained my salt-moderate approach to diet.

But now, when the cancer seems to be coming back for a second shot at me, I find myself thinking, ah, what the hell, and reaching for the soy sauce.

My mental metaphor for my first round with cancer was that I was strapped into a rocketship and launched on my trajectory, and that the trajectory was out of my control. The arc of flight would take me where it would, and I had no option but to go along for the ride.

My metaphor this time is different. I'm in a burning airplane, with no way out, and it's coming in for a crash landing, the survivability of which is uncertain.

So what does it mean in practice?

Well, in the short term, it means I get to dine more often with family members, drink more wine than usual and buy more chocolate than usual, a lot more chocolate, not the little bars but the really bit ones which have been scientifically designed th meet the needs of middle-class famine relief.

At one of these family meals, which took place at my sister's place, the invited guests included Helen, who was one of my superior officers in those long-ago years when I was a member of a military unit.

It was a medical unit, first called One Field Hospital, and then, having been downsized and combined with a field ambulance, retermed a medical battalion, an odd beast which I don't think you will find in any standard dictionary of military terminology.

I never got to go to war with this unit, but I did get to go on a medical mission to Tonga (one task of the mission being to do a survey on some kind of disease, I think possibly typhoid), and I did get to go to Fiji to provide medical cover for an infantry unit doing jungle warfare training, and I also got a trip to the Solomon Islands, the mission being to inject the local population in a certain area with long-life penicillin to eliminate yaws.

(Yaws is a disease which spreads by social contact, such as the skin-to-skin contact of kids playing together, so it spreads very easily through a society, and the medical wisdom of the times was that, after the incidence reaches a certain percentage, the correct approach is go give everyone the one-shot penicillin cure, without worrying about who is or who is not infectious, which made it a suitably mindless exercise which could be successfully be completed by a part-time military unit going out to the Solomons in two waves of, if memory serves, two weeks each.)

Anyway, Helen was looking at a copy of CANCER PATIENT, the medical memoir I wrote about my first encounter with cancer, and she was surprised to come across the passage on the big fire near the Waiouru military base.

I remembered the fire during my first stay in hospital because, having been pressed into service as a radio operator in the employ of the fire chief, I came down with hypothermia during a long night ride in the uncovered tray of a four-wheel-drive vehicle, heading back to an improvised camp.

That was my first identifiable brush with death, though fortunately my condition was not too bad by the time I reached the improvised camp, and, after a few hours in a sleeping bag in the back of an ambulance, I started to warm up.

Helen was also at the Waiouru army base at the time of the fire, and what she told me, what I had not realized until then, was that a number of soldiers ended up in hospital being treated for hypothermia.

Waiouru is up high and it gets cold, and these troops were drenched with water from the monsoon buckets that the helicopters were using to douse the flames.

(I have no recollection of having seen any helicopters that day, though it may be that we had rations delivered by helicopter and that I have simply forgotten about it. Such was the huge scale of the fire that, even though I was with the fire chief, and was, theoretically, in the middle of the burning area, I could see nothing on fire and could not even see rising smoke anywhere in that hilly landscape.)

Out of curiosity, I asked Helen if that was the Waiouru camp at which a certain number of the higher-ranking members of the unit went and raided a rival medical unit.

(I did not get involved in this kind of mischief, because I was a member of the lower ranks, which were, I think, somewhat more disciplined. I never got higher than sergeant, a rank I held only very briefly, right at the end, not very long after reaching a major decision junction in my life: do I become full-time career military, or do I not?

Even back then, I was long in the tooth by military standards, but I was an army medic, I had done courses, had worked in military hospitals, had been on overseas trips, and, of course, could do the standard stuff like shoot rifles and throw grenades, and they were short of medics so, after I had applied, they came back with an answer, which was, yes, they had a job for me, if I wanted it.

Instead, I turned it down, and, some months later, quit the military entirely, and, the next year, 1989, took a year off and traveled: Singapore, Malaysia, Thailand, Nepal, India, Greece, Turkey, Hong Kong and Japan.

Being, then, low in the ranks, I never got involved in the trouble that the officers did.

(I have no idea why, after one parade during our Tonga deployment, the commanding officer chose to march the officers away and bawl them out when they were some distance away from us, and we could not overheard what was being said. But I understand that they did get a good chewing-out, and I presume they deserved it.)

I ran the second-hand version of the story I'd heard. Allegedly, some of the senior members of our unit had raided the tented hospital encampment of our rival, a military hospital under canvas, very much, in outward appearance, like the Korean War tented hospital featured in the American TV show Mash.

The tented hospital was treating real patients and one of the patients woke up late at night and, very perturbed, called out, "Nurse, nurse! There's someone under my bed!"

And so, according to the story I had heard, it was, and it was a certain warrant officer, whose name I have conveniently forgotten.

And apparently this warrant officer wriggled out of it by giving name, rank and serial number, but not his name, not his rank (the rank he gave was an air force rank) and not his serial number, either. (You don't get to be a warrant officer unless you're competent.)

But the story Helen told me was different. No, the people under the beds did not get caught, because the idiots at 2GH never thought to look under the beds.

Then Helen told me the story of a certain officer -- I don't recollect that she pinned a name on the woman during our conversation -- who was in on the raid.

This female officer, who I'll call Captain Boadicea, was at a very formal military function in her best uniform, splendid and immaculate. And, having got splendidly drunk (a habit which, I believe, the New Zealand army was at the time trying to moderate, with partial but obviously not perfect success) they decided to go out raiding.

The target was 2GH, Two General Hospital, based down south, at or near Wellington, New Zealand's capital city.

The 2GH people had used mechanical diggers to dig a huge hole about ten feet deep (that is, roughly three meters deep) in the land on the western side of the Desert Road which runs through the Waiouru military training area. They had set up their entire tented hospital in this formidable military stronghold and were feeling very, very proud of themselves.

So. They were fair game, right?

To infiltrate to the enemy encampment, Captain Boadicea and her comrades crawled on their hands and knees through what was described to me as "a place with radios", which I can only presume to have been the top-secret electronic spying base which the navy maintained on the land to the east of the Desert Road. (Not so top secret because you could see it from the road.)

Having crawled through a lot of wet grass on a very cold night, they easily penetrated the 2GH security cordon and got inside the hospital.

Then a couple of them got discovered walking round the hospital, and were challenged, and, in the confusion, an over-excited sentry discharged a rifle, which, fortunately, was loaded only with blanks.

Those under the beds, true to their military training, reacted to gunfire by hugging the ground and staying quiet, very quiet. Mice don't come any quieter.

And, because the 2GH mob were ignorant of the guile, the military tenacity and the sheer numbers of the invading force, they, having caught a couple of the culprits, congratulated themselves on having achieved a magnificent victory. And the survivors crept uncaught once everything had settled down.

There was, apparently, a BIG fuss about it all the next day, the fact that a rifle had been discharged without proper authorization elevating the profile of the incident. But Captain Boadicea and most of her companions got away with their mischief.

This is the kind of incident that military training can involve you in, so you can see why George W. Bush was wise in sensibly avoiding most of his.

Helen's big news of the night was that she had her long-standing female companion had chosen a propitious date for their upcoming marriage, the provisional date being February 10. (My mother, getting a little bit technical, says they're going to "enter a civil union", but, as far as they're concerned, they're getting married.)

So these, then, are the consequences of cancer for me, the immediate consequences of cancer (possibly) coming back: I get a little reckless with the soy sauce, hit the wine when it's on offer (but not as hard as members of the officer class -- I've never had a hangover in my life, and those I've written about are modeled on reports I've received from survivors of the Alcohol Front) and eat quite a bit of chocolate.

And start thinking about going back to hospital for more chemotherapy.

If it does work out that way, then I figure I can afford to splash out for an iPod (my culture does not require me to buy my own coffin, so I don't have to save money for that) and I'll load a few talking books on that (my eyes are messed up and the spectacles I have aren't much good, so, while I can read, I can't really read for pleasure), and I'll sit in my hospital bed, listen to my iPod, and write poems on whatever topics come into my head, such as, perhaps, the character-forming influence of military discipline or about George W.'s glorious wars on cancer and poverty.

Wednesday, January 25, 2006

A Junkie Again

So I'm a junkie again, taking oral steroids, dexamethasone, a fairly massive dose. Two tablets twice a day, each tablet weighing in at four milligrams for a daily total of sixteen milligrams.

This stuff acts as an upper. Picks you up and drives you forward. Your mind shrugs off the habit of rest and, mentally, you campaign forward relentlessly. Don't sleep (well, maybe four hours a night, maybe less) and don't need to sleep.

A good doctor told me about a bad doctor who, needing to take a very long road trip in the British isles, hyped himself up with dexamethasone for the trip. With everything in the pharmacy to choose from, dex was his choice of drug.

There's a kind of attraction in being wired up and able to go forward, but there's a downside. Not being able to sleep results, at least in my case, in explosive irritation. And, last year, after taking dex for months, I ended up with a classic puffy steroid-user's face, minor internal bleeding (spontaneous nose bleeds, odd bruises on elbows and between my toes and, once, a bust capillary in an eye) and, on top of that, wasting of the major muscles in my thighs.

The really weird thing about this drug is that, while it causes muscles to waste away, it has the reputation of only affecting two groups of muscles: the large muscles in the thighs and the muscles in your upper arms that you use to lift weights uphill.

Last year I tapered off the dex and finished, and, on safety grounds (we sometimes have young kids running around this house) binned my drug stash.

But Tuesday January 24th I got on the phone to the hospital, or more exactly to the oncology department, and said, hey, guys, I know you're planning to see me sometime in that big wide wonderful world known as the future, but could I please have some symptomatic relief right now? Because my eyesight is crashing, going downhill fast, and I'd like something quick before I go blind.

I didn't add that I was terrified, but I was. My subjective impression was that my eyesight problems had worsened noticeably in the preceding twenty-four hours, and my thesis was that the lymphoma was back, that the brain cancer was causing a swelling which was crushing my nerves out of existence.

My grounds for thinking this were that my eye surgeon had warned me that probably the cancer had reactivated, and that it was probably pressure on the nerves running from the eye to the brain which was compromising my vision. And I'd received instructions from him to get on the phone to the hospital, fast, if things deteriorated.

The upshot was that the top cancer doc, who, having had me as a patient last year, knows my medical history, faxed a prescription for a week's supply of dexamethasone through to the local pharmacy.

I've been to the pharmacy so many times because of cancer and associated eye surgery that they know me by sight. I walked up to the prescription counter a couple of hours after the prescription had been faxed through and a young woman said to me, "Mr Cook?" And my prescription was already in her hands.

Back in December 2004, pressure in my brain precipitated a crisis, causing partial paralysis of my left side, and a solid dose of dexamethasone reversed that, liberating me into the full possession of my body in a matter of days.

Magic stuff.

And the fact that my cancer doctors were able to give me something which restored me to normality in a matter of days really gave me the sense that these were the guys with the answers.

By that stage, however, the optic nerve connecting my left eye to the brain had been damaged into blindness, perhaps by cancer getting into the optic nerve itself (which an MRI scan showed it had done) or by the pressure in my brain crushing the nerve, or by a combination of both factors.

My eye surgeon told me the nerve would "probably" not recover (damaged nerves usually do not) and so I found myself facing the bitter news that I was permanently blind in my left eye.

However, medical outcomes are never entirely certain (unless you've just been guillotined, in which case certainty is part of the deal) which was why my eye surgeon used the word "probably".

And, bit by bit, over a matter of months, the vision in the left eye gradually came back, something my eye surgeon said was "almost" a miracle.

If I had the habit of belief, and if I'd been on a pilgrimage to Lourdes, no doubt I'd now be confidently reporting a genuine miracle to the world. However, since all I did was to get up each morning to eat my cornflakes, there seems to be no grounds for thinking that a genuine miracle took place, unless you attribute miraculous powers of healing to Pam's Cornflakes (or, perhaps, to the New Zealand milk I've been putting on those cornflakes).

So, having very nearly lost the left eye permanently, I was in a state of high anxiety as my eyesight deteriorated, and was very glad to get my hands on the dexamethasone, which, logically, should secure a reversal of the symptoms.

That said, it's a palliative, not a cure. If tests show that the cancer is back (and I'm expecting that this is the case), then I'll be facing a three-way choice, which is (a) skip treatment and die, (b) have treatment and live and (c) have treatment and die anyway.

The choice is not entirely in the province of free will. You don't get to choose between options (b) and (c). You can choose (a) if you want, and some people do -- my sisters, who spent part of her life as an oncology nurse, told me that some people quite simply refuse treatment.

But if you go for the b/c alternative, you can't choose which you get, (b) or (c). That lies in the province of fate. You're gambling, big time, and the odds are stacked against you.

That's how it is when you gamble: the odds are stacked in the favor of the house. And my understanding is that my chances of winning are pretty slim. Which is not to say non-existent.

Even so, there are still payoffs in being alive, like being able to get up and eat your cornflakes in the morning -- realistically, you can't expect to go on doing that if you're dead. And there's also a big payoff in the fact that your own life is suddenly a very interesting life to you.

So I aim to go forward.

That said, the "doing battle with cancer" metaphor is certainly not mine. It's a useless metaphor since there's no way to fight this. I had no way to exert my will to make my blind left eye recover. I just got up each day and ate my cornflakes and I got lucky and the eye came through for me.

Similarly, I have no way to wage war on this disease. It's a condition, and a diet of cornflakes either cures it or it doesn't. In addition to the cornflakes, I imagine that they will again pump poison into my veins, if I end up having another round of treatment, but the situation is still the same: you can't take charge of your own body and discipline the disease out of existence.

I know that this is contrary to commonly believed precepts of holistic medicine, but my perception is that, when it comes to cancer, choosing the holistic route is tantamount to committing suicide, and I'm in no mood for that, thank you very much.

In a situation like this, I have great role models, one of them being Saddam Hussein, Mr. Acid Bath Enthusiast. Guy seems to have lost the game, and he's gone down, they're going to nail him dead, a fate which he undoubtedly deserves about fifty thousand times over, but, to judge by what we've seen in the press reports, he's showing no signs of flinching. He's probably going to die but he's certainly not going to whimper about it.

I suppose you can't go online and say that you admire Saddam Hussein, so I won't. Even so, I'm keeping him in mind as a role model.

So my view of cancer, then, is that it's a condition, like rust in the corrugated iron of your roof, or bald tread on your car tires, or dry rot in the tree in the back garden.

Your thesis may be that you can reverse these conditions through hope, faith, prayer and struggle, but the reality is that you probably can't. If you could, we'd have roofers, tree surgeons and motor mechanics employing just such methods. But we don't.

That said, there are still initiatives I can take, like get on the phone and yell to the hospital, loud and urgent, drugs, I need drugs, I need drugs right now, I don't want to be blind by Friday. Which I said to Miss Impervious on the phone, when she seemed to be in a mood to stonewall me: yeah, I know I've got an appointment to see the cancer doctor on Friday, but this is Tuesday, and, at the rate things are going, I could be blind by Friday.

Yes, I said that in as many words. I don't think she's a doctor, just a functionary, a gatekeeper between the medical staff and the outside world.

I wasn't rude with Miss Impervious, but I was emphatic, and being emphatic is one of my skills. And, having been through the "going down with brain cancer" thing once already, I'm confident that I understand the urgencies of my situation in a way in which some salaried office worker, who is not a medical person, quite possibly doesn't.

"As a patient," says my sister, "you have to learn how to be the squeak wheel."

And, having had a year to practice, I've learnt.

My eyes haven't been entirely right since some time in 2003. They're a mess. For a couple of years, now, I've had, intermittently, pulsing purple lights in one eye or both (I can't work out if it's the left, the right or both), and, on occasion, a kind of transitory wave of silver which momentarily obliterates the vision in my left eye.

I attribute these effects to nerve damage, as they don't seem related to chemotherapy, radiation therapy, ophthalmic steroids or eye surgery.

My sister got on the phone to remind me how to take the steroids, in case I'd forgotten, which I had. Two doses a day means one at breakfast, on top of food, not on an empty stomach, and one at lunch time, similarly, the idea being to go with the body's natural steroid cycle, in which the natural dose of steroids in the body tapers off later in the day. And take the tablets with water. Dry-gulping tablets, which is what I tend to do, is a very big no-no. My sister is very strong on this. The tablets (any kind of tablets) can get stuck, and sometimes do.

I'm expecting that taking dex will reverse some of my present eyesight difficulties, though I can't really tell how much is due to residual nerve damage, how much is the consequence of (hopefully transitory) vitreous haze in the aftermath of eye surgery (this doesn't always happen but it has happened in my case) and how much is the consequence (the reversible consequence, all going well) of the brain swelling which I assume I'm currently suffering.

Now that I know the visual field defect exits, it's easy to demonstrate its existence.

If I sit up in bed with my laptop computer on my knees then the whole screen seems to exist. I'm under the impression that it's there, a rectangle, at least while I have both eyes open. But if I close my right eye then the words in the upper right quadrant disappear.
More dramatically, if I close my right eye and look straight ahead at my finger, then, while still looking straight ahead, move the finger upwards and to the right, the finger almost immediately disappears.

That said, if I'm out walking down the street I do not have the impression that a quarter of the world is missing. Until I saw the results of the visual field test, I had no idea that one quarter of my visual field was blind.

Overall, facing the uncertainties of the future, I feel calm, but I did have a nightmare the other day, a genuine nightmare, and I wrote a poem about it, a poem called THE MACHINE. No plot arc to this nightmare, I'm afraid. It's a dream sequence, not a properly structured narrative. So what I give below is all I have to give.


The machine which has come for my organs
Will get me alive.
I cannot self-destruct.
At the end of the corridor.
Beyond the door,
It looms hugely,
Blurred but visible.

Friday, January 20, 2006

The Cancellation of my Life

To be histrionic, I could call the graphic above "the diagram of my death". What it is, in fact, is a crude representation of the result of the visual field test I had on 2006 January 19, the white showing the quadrants in which my eye saw and the black showing the quadrants in which I did not see.

2006 January 19 Thursday.

Well, it's official. My life has been canceled for the moment, and perhaps permanently. The brain cancer for which I was treated may quite possibly have come back, and I will be undergoing further tests to find out whether that is or is not the case.

I am not a great believer in ritual. However, near the outset of my medical treatment early last year, I walked down to the edge of the sea and cupped some water in my hand and drank, drinking from the waters of the planetary ocean, from the whole of which I am a part.

This evening, as a kind of way of dedicating myself to what is left of my life, be that long or short, I once again walked down to the edge of the sea, and, in defiance of any concept of medical responsibility, drank from the waters of the Waitemata Harbour.

As I did so, I remembered drinking the water at Muktinath, a holy place high in the Nepal Himalaya, which I have visited twice, on each occasion crossing the high pass of Thorung La, up at about 5,400 meters.

During my first confrontation with the possibility of my death, I thought over the life that I had lived through, and decided that, on balance, I was satisfied. And now, though I don't yet know exactly what I'm up against, or what the outcome will be, my feeling is much the same.

My eye surgeon saw me yesterday, Wednesday 18 January, for what was supposed to be the last post-operative check following cataract surgery on both eyes (and, on the right eye, a vitrectomy -- that is to say, a jelly-removal operation).

Being disconcerted by a drop-off in the vision in my right eye, where my central vision has failed, he had me show up at the Greenlane Clinical Center today, and I underwent tests in the morning and saw the eye surgeon in the afternoon.

I was told that one test involved injecting a dye so my eyes could be photographed, and so I imagined that I was going to have yet another injection into the eye itself. But, no, the injection (of some kind of vegetable dye, I'm told) was into a vein in the right eye.

In this test, called fluorescein angiography, dye floods the eye within seconds of being injected into the vein, showing up all the details so photographs can be taken.

While in the waiting room, before this test, the man sitting next to me saw the information pamphlet I was reading, and said that he, in his trade, had used fluorescein to detect leaks in pipes, using ultraviolet light to see any leaking fluorescein

There were a lot of photographs, and they were hugely bright, and I wondered what the photographs would show.

The photographer this time was a man, and very quietly spoken. Some months back, I had photos taken by a woman, chatty, very fair of skin.

She was photographing the backs of my eyes, and told me that her retinas were pink, because she was fair-skinned. In my case, my retinas were red, a standard Caucasian color. She said that people with darker skin have retinas which are a ... I think I remember her saying "a greenish brown". And, on a computer screen, she showed me a damaged portion of one of my own eyes which was, if memory serves, a kind of greenish brown, mottled and discolored.

So what did today's eye photographs reveal?

Absolutely nothing.

A lot of eye defects will show up with this kind of test, but the photographs of my eyes revealed nothing negative.

What brought the bad news was the visual field test.

In this test, you hold a button in your hand and look at a bright light in the center of a screen. Flashing lights go off here and there, and, every time you see a flash, you press the button. You do this first with one eye then with the other.

While doing this test, I was conscious of the fact that I was failing this test, and failing badly. I was tired, and it was difficult to concentrate. Sometimes I saw a very clear orange flash, like a small exploding star, and sometimes I saw just the tiniest flash, and sometimes I saw something which might have been a flash or a hallucination or the static of interference from damaged nerves.

Sometimes I pressed the button late, having been slow to recognize that there had been a flash, and sometimes I didn't press the button at all, even though there had been a flash, and sometimes I accidentally pressed the button at random intervals when there was no flash at all to be seen.

But I figured that lots of people must have these kind of difficulties, and that presumably the test was engineered to accommodate human failure.

And so it was.

Though I experienced the test as chaotic and confusing, failure inflicting itself upon me, the results were extremely clear.

In the afternoon, my eye surgeon showed me the computer-generated results of my button pushing, and my erratic response to the test had generated two very clear images, one of what I could see in my left eye and one of what I could see in my right.

Where I could see flashing light, there was whiteness, and where I could not there was blackness. In both eyes, the blackness was in the upper right quadrant. I was effectively blind in the upper right quadrant of each eye, though I was not aware of this. And, in the right eye, the blindness was encroaching on the central area of my vision, something that I was very much aware of.

(Currently, if I hold out my right arm directly in front of me, thumb raised, I cannot see my thumb. The central portion of my visual field is just a blur.)

The long medical name for this condition is upper quadrant anopia.

(One of the great things about having brain cancer is that it's the vocabulary-building opportunity of a lifetime, although I'll freely admit that I haven't optimized my use of this opportunity. The other great thing is that you get to eat hospital food, lots of it, which makes you appreciate the good things in life all the more when you finally escape from incarceration.)

I was really impressed by what a crystal-clear result came out of what had been, subjectively, a chaotic and entirely unsatisfactory test. Plainly, the technology works. Congratulations to those who engineered it.

My eye surgeon told me my eyes had recovered well from surgery and there was no evidence of any damage in the eyes. Furthermore, the fact that the field defect was pretty much exactly the same suggested a common cause.

He told me maybe my brain cancer had been reactivated.

The nerves from both eyes run through a common channel as they head in the direction of the brain, and some kind of tumor or something could be pressing on the nerves.

"The good point about this," he said, giving me the happy news, "is that if it is a recurrence of the lymphoma then it's treatable and the symptoms should be reversed."

That's not verbatim, but that's approximately what he said. The bad news, which we didn't go into, but which I'd clarified with my radiation oncologist on an earlier occasion, is that if the lymphoma comes back then it is generally not possible to achieve a second remission.

That said, I think back to a day in hospital, in the hematology ward, which was where I ended up receiving my chemotherapy. A woman wa visiting a patient who had cancer, and she told him of her story. She had cancer. She achieved remission. The cancer came back. She achieved a second remission. She was there to tell him it was doable.

There's a saying: give me a why and I can endure any how.

During my long siege of medical treatment last year, I realized that I had enjoyed a good life, and that I was satisfied by the life I had led. But I also realized that I had things to live for. And, at this stage, I do not know what lies ahead. But what I do know is that if it is possible for me to live, then I will endure what is necessary to achieve that end.

Saturday, January 14, 2006

Publishing a Book of Poems

2006 January 14 Saturday.
The picture above shows the front cover of the collection of poems I have just published via, a book called ARC OF LIGHT. It's various poems that I have written over the last thirty years or so, from 1975 through 2005.
The book can be purchased online from and the full text of the poems can be viewed at Here is a sample:

Mozart the Fish

She's standing at the counter, fairly serious,
Lips pursed, filling in a form -
A minion of the quotidian,
A functionary of the realms of order,
The output of the input of the timeclock.

She is pregnant.

In a world without clocks
Something which is not yet someone
Is swimming.
Five centimeters -
Mozart the Fish, evolution's astronaut,
Infinite in the confines of Mother Earth,
Alive within the oceans of her pulse.

Later, it will be simplified:
Name, rank and serial number.
It will be dumbed down, constrained
To pay taxes, build cruise missiles, kill cockroaches
And bow down to God.
It will be colonized by the minor technicalities
Of speech, fashion sense, resumes and toilet training.
But that comes later.

For the moment, it is suzerain,
An empire of metabolizing iron,
Replicating Parthenons, building
Constellations of significance.
Five centimeters of infinity,
Dynastic inheritor,
Building from the debris of the stars
Its seven days.

One of the softer poems in the book. Some of them are considerably harsher, particularly those dealing with war.

I uploaded this book from a house in Devonport, New Zealand, which is currently in the undisputed possession of the Most Expensive Cat in the World.

The Most Expensive Cat in the World was originally a stray obtained for free from the SPCA, the Society for the Protection of Animals. But gradually more and more money was invested in this cat, to the point where I have no doubt that it truly merits the title I have given it, the Most Expensive Cat in the World.

This cat was flown from New Zealand to Australia and put into quarantine. For months. Then it was flown from Australia to Switzerland. And again went into quarantine. Again for months. Then it returned to New Zealand, with yet another jet liner odyssey begin added to its price tag. Then it went into quarantine yet again. And all that adds up.

Recently, the Most Expensive Cat in the World became quite agitated, thinking that the humans who share its life were planning yet another move, and that it was doomed to go into the hold of yet another jet airliner, and to be incarcerated yet once again in one of those places where they don't allow cats to have access to either lawyers or the news media. It started climbing into suitcases that were in the process of being packed, as if the attempt to deny the use of those suitcases.

But the humans had no plans for any more cat-exporting. The cat-exporting phase of their lives is over, and they were just heading off to Canada to ski.

So I'm alone today in an otherwise unoccupied house with the Most Expensive Cat in the World, which I will be feeding tonight and tomorrow morning.

This cat, it needs not just food but water, also. And you can't just pour the water into anything, no.

There was a time when this cat insisted on having its water in a glass. Fill the glass for me and put it down in front of me, and then I'll drink from it, and not otherwise.

But now it drinks from the scallop shell.

The scallop shell lives upstairs, by the shower, and you don't bring it to the cat, no. You fill it up and the cat saunters up the stairs, when it's good and ready, to sample.

I've been working today, wrapping up the ARC OF LIGHT book and uploading it, in a cool downstairs office with the back garden just beyond the venetian blinds, which are drawn to exclude the glare.

It's summer here in New Zealand, and hot. The season of flies. We don't have all that many flies compared to, say, Australia, but we have enough for them to be bothersome.

And ants.

I have never thought of Auckland as being a city of ants, but the younger of my two brothers, who is an exterminator by profession, was at dinner at my parents' place last night, and the thing that is keeping him really busy right now is the ants.

Apparently some people have ants so bad that the ants, on a daily basis, fill up the shower pan with the bodies of their dead, the said bodies having been turfed out of some huge an infestation nested in the ceiling.

And there are other people, apparently, who have ants so bad that, every time they sit down to eat dinner, there are ants falling down from the light fixtures and dropping on top of their meals. This, I'm told, gives you a BIG incentive to go call the exterminator.

A couple of years back we had ants in our house in Japan. They were based in the garden but came invading. So I went to one of the local home centers and spent a long time puzzling over the Japanese labels of some of the truly enormous range of intensely toxic products which you can buy to kill just about anything you fancy, including yourself if you're not careful.

After long hestiation, I finally selected a product, which did the job. Goodbye ants.

They're going to end up in possession of the whole planet, one day, when we are gone and finished, but that day is not yet.

Right now in Japan it will be winter, and I am wondering how my wife and daughter fared in the recent heavy snow, the heaviest snow for sixty years. I received a letter yesterday, but it was dated December 28th.

Something wrong with the incoming mail system here. Letters airmailed to England or Japan get there pretty quickly, but incoming mail seems to take forever.

Well, soon enough I'll be in Japan myself, and I'll be able to see the snow, if there's any left by the time I get there. Probably not. On the rare occasions when snow falls in the Tokyo-Yokohama area, it's generally entirely gone in a few days.

The ARC OF LIGHT project is the last major task I wanted to complete before heading to Japan. That done, I can comfortably concentrate on my family duties once I get there.

With the ARC OF LIGHT collection finished, I've now finalized four books in less than twelve months: the BAMBOO HORSES novel, the CANCER PATIENT medical memoir, the very long suicide bomber novel TO FIND AND WAKE THE DREAMER and, just now, this book of poems.

That done, that's my ambition satisfied, for the time being, though, through the coming year, I do intend to post various poems and stories and micro fictions and so forth on the creative writing section of my site.

Friday, January 13, 2006

My House in Japan

2006 January 13 Friday (New Zealand time).

This picture, surely a candidate for the Worst Ever Snapshot Competition, shows my house in Japan. That is to say, the house that I will be returning to, very shortly, after an absence of more than a year, a year spent undergoing treatment from cancer and then convalescing in the aftermath of treatment.

I can't go back and shoot a better version of this photo for the simple reason that a house has been constructed in the middle of the picture, to the left of the utility pole.

Even so, you can still see Mount Fuji from the upper story of our house, which stands high on a steep hillside in the city of Yokohama, a little south of Tokyo, on the island of Honshu, in the nation of Japan.

What's hard to credit, after more than a year spent in exile in New Zealand, living with my parents, is that not only is there a house waiting for me in Japan, but a wife also. And a daughter.

It's like one of these alternative reality stories, where there's a door that you open, and you go through it, and it's a different world, a completely changed reality, completely different from this one.

The photo shows the house, the utility pole angling across the frontage. The big slab of white in front is the concrete of the street-level garage on top of which the house is built. No car in the garage, but there is forty liters of water, waiting for the time when the big earthquake comes.

The house is a proper house, not television spacious, but perfectly livable. Downstairs, a kitchen, a bathroom, a toilet, a master bedroom in traditional Japanese style complete with tatami mats and paper windows (glass windows outside the paper windows, and sliding metal shutters outside the glass windows) and a living room.

The living room opens through French doors onto the front garden. Take the kind of longjumping pit you might see at an athletics meet then double it, and that's about the size of the garden.

A couple of months back, my wife went out through the French doors to hang out laundry, and my daughter Cornucopia, then about eighteen months of age, very cleverly manipulated the door catch and locked her mother out.

So my wife was stuck outside, as she had neglected to bring her key with her.

You can scramble over a fence and get from the garden to the stairs which lead down to the street level, but escape was not the issue. Getting back inside the house was.

My wife asked Cornucopia, very nicely, to please open the door. And, in a demonstration of intelligence, my daughter did.

In the photo, the garden is located where the band of darkness above the white of the concrete garage is seen.

Up above that are the balconies for two of the three upstairs bedrooms.

One of the two rooms with a balcony is my wife's personal room, where she has her hugely expensive massage chair. Another functions for the moment as the guest room, and is where my Japanese mother-in-law stays if she comes to visit. It is also the room where our high-speed connection to the Internet service offered by our local cable TV terminates.

I set up a wi-fi system, which is encrypted so snoopers can't make sense of what you're doing on the Internet, so we can sit downstairs at the dining table and type away, wirelessly. That, so far, has been the toughest test yet of my fairly primitive Japanese language skills: figuring out the approximate meaning of the Japanese-language manuals I needed to make sense of in order to get the wi-fi system up and running.

It is the destiny of this bedroom to become my daughter's once she is old enough to need a bedroom of her own.

Two of the upstairs bedrooms have balconies, then, one of these rooms being my wife's personal room, and the other being destined to serve as my daughter's bedroom.

The third upstairs bedroom is fairly small, big enough for a mattress and a desk and not much more, and it is my personal room.

Once I get back there, I probably won't be able to find anything, because my wife tidied up in my absence, claiming to have removed "mountains" of dust. She probably did.

My personal room is furnished with a big heavy table that I bought cheap from the local junk shop, which gets rid of stuff on behalf of a house removal company which disposes of unwanted furniture and the like which customers want to get rid of when they move.

The junkshop prices are so good that they're almost the same as getting stuff for free. So, after we moved into the house, back a few years, when it was new, I bought my table, the dining table, the dining room chairs, two armchairs and a huge TV from the junkshop.

I finally stopped buying stuff when we ran out of room for any more furniture.

I find myself, these days, as the time for my return to Japan draws near, trying to remember how things are in the house. But some things I quite simply can't remember.

Where do we keep the breakfast cereal, for example? I have no idea.

My wife wrote me recently that the shop where we used to buy Ceylon tea in unbranded plastic bags has gone out of business, so now we are buying a new brand. What brand I don't know. I'll find out when I get there.

I suppose it will sound ridiculous to say that I was upset to learn that the small and inconsequential shop near the Shibuya railway station where I used to buy Ceylon tea has gone out of business. But it did upset me. It's a reminder that things will have changed in the year and more in which I've been away, and I'm going back to a world which I cannot entirely predict.

Well, you cannot go back to the world in which you used to live, because that world no longer exists.

That's something which has really come home to me recently as I've been editing my way through the poems I've chosen for my ARC OF LIGHT collection, a collection of sixty poems that I will be publishing really soon now. In many cases, these poems are souvenirs of a world which, really, no longer exists.

Everything changes.

To close out my account of the house photo, the structure looming behind the house is an apartment block, which is perched up near the top of the steep ridge on which our house stands.

The road up to the house from the station is steep and a little complicated. And, in the closing stages of 2004, when the effects of brain cancer were starting to make themselves felt, a few times I got lost coming home at night.

That is an extremely freaky experience, getting lost coming home to your own house.

But, when I go back to Japan, I will be arriving by daylight.

I have never before bothered about what time my plane gets in. Any time will do.

But, while I was in hospital, in the very early stages of treatment after the diagnosis of cancer had been made, I comforted myself by imagining myself arriving at Narita early in the morning, and traveling by bus to the main station at Yokohama, then getting the train to our home station and walking up the hill to the house, arriving while it was still morning.

And, when the time came to book my ticket, I realized that this dream was perfectly doable. You just have to ask for a flight which will get in early in the morning and you will get one.

So there it is.

After my long exile from what I have come to think of as "real life", I am going home. I will step through the door that leads to one of the alternative reality realms which lies beyond the boundaries of the cancer ward, and there will be a house waiting for me, and a woman who is my wife, and a child who is my daughter.

I am not exactly counting the days yet. I am too busy with the final work on the ARC OF LIGHT collection, which I want to finish and upload in the closing window of opportunity which is available to me, before my renewed responsibilities start to dominate my timetable.

But, when I do pause to count the days, I find that I will be getting on the plane just twelve days from now. And flying off to a new reality. A new beginning.

Thursday, January 12, 2006

Mangifying Glass in Hand

2006 January 12 Thursday.

Magnifying glass in hand, I'm navigating my way through the world, using the magnifying glass to interpret, in particular, pull-down menus on computer screens.

It is a world which is designed, in many cases, with a totally witless disregard for the needs of anyone who might not be a sharp-sighted young person with perfect vision.

I ended up in this condition because I had cataract surgery on both eyes back in November last year, 2005, and some weeks had to pass for my eyes to settle down after surgery before I could go to an optometrist to get the spectacles that I will need for efficient reading and computer work.

Early this week the day came for me to go to the optometrist, and I should receive my new spectacles on or about the 20th January.

My parents know an elderly woman who has recently had cataract surgery on both eyes and is experiencing extreme problems from the enormous glare which the world inflicts upon her, a glare so intolerable that she cannot watch television. In my own case, I wear sunglasses when outside, but, other than that, the glare is not unreasonable.

Cataract surgery does tend to be successful, but the results are sometimes disappointing and there is some recovery time involved.

In my case, the gap between surgery and the date when I could go to the optometrist was longer than it would have been for simple cataract surgery, because, in addition to having a cataract removed and an intraocular lens implanted, in the case of my right eye I also had, at the same time, a vitrectomy, that is to say, a jelly-removal operation.

However, by the time I leave New Zealand and head back to Japan, which should , all going well, be the 25th of January, I should have my spectacles and should be able to abandon the magnifying glass.

In the days before heading back to Japan, I hope to upload a collection of poems, ARC OF LIGHT, poems written between 1975 and 2005 - that is to say, the output of a little more than thirty years.

More on the ARC OF LIGHT collection later.