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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

        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 sister, 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.

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