This is part of the full text of the medical memoir "Cancer Patient" written by Hugh Cook. The full text has been published online on a free-to-read-online basis. This autobiographical non-fiction account deals with the author's initial health problems, diagnosis, and treatment with chemotherapy and radiation therapy.
The complete text of "Cancer Patient" is here on this web site but is also available for purchase from amazon.com as a proper printed paperback book. The full text may also be purchased as a download (a PDF file) from lulu.com for US $5. Go to lulu.com/hughcook
For a chapter-by-chapter breakdown of what's in the book (in its online version, in the PDF version and in the paperback version), see:-
Table of Contents
CANCER PATIENT is a medical memoir which deals with the author's autobiographical experiences which involve, amongst other things, chemotherapy, radiation therapy, a brain biopsy, a lumbar puncture (and then some more lumbar punctures), treatment with Ara-C, treatment with vincristine, treatment with methotrexate, treatment with radiation from a linear accelerator, and a vitrectomy (an operation to remove the jelly from an eye). This is a non-fiction account but it does contain a couple of fictional stories, clearly identified as such, and it also includes some poetry.
The author has another magnetic resonance imaging scan. The author's life is in a holding pattern, his energy levels severely depleted following chemotherapy. The author researches the possible side effects of radiation to the brain and learns about something called radiation necrosis. Which can kill you. The fun never ends, does it? Meantime, daily life continues in the land of quilts and bell ropes.
* * *
2005 June 6 Monday.
And so now it's early June and I'm in a holding pattern, sort of, waiting for radiotherapy to start. Radiotherapy will take four weeks and what I keep hearing is that it will quite possibly make me tired. How tired I don't know, but I don't like the idea of being tired.
In the aftermath of chemotherapy my energy levels already seem to be severely depleted and I don't like it. It's frustrating to get a certain amount done and then run up against a wall, energy point zero. Still, life continues, and I do manage to achieve something every day.
When I went round to my sister's place today her two children were in angel mode.
"Peter's raining," said my sister.
This didn't quite seem to make sense. Neither kid is called Peter and I couldn't think of any other contender for the name so I queried what had been said. It turned out that actually her words were "Peace is reining". I'm still having trouble with the New Zealand accent, so I experience the occasional listening problem which gives me a hint of what it might, perhaps, be like to experience low-grade brain damage: to start misperceiving and misinterpreting the world.
My sister asked me about the verdict on my flu shot. Should I get vaccinated against this year's set of influenza viruses or would the shot do me more harm than good?
"The doctors said that I could go ahead and have the flu shot if I wanted to," I said. "They said it wouldn't do any harm. But because my system's been knocked around by chemotherapy it probably wouldn't react to the flu shot so I probably wouldn't develop immunity as a result. So I decided to skip it."
At my sister's place I was able to go online and access my web-based e-mail. Just as well, otherwise I would have missed a whole bunch of important messages, including the one starting "Qualityrxdrugs are avail-able at specialprices. Ttake vantages of eeasier cybers ..."
Having done my e-mail and having updated my web site I found myself with a little time on my hands so decided to do a bit of online research into the side effects of having radiation therapy to the brain.
I thought I knew pretty much what to expect but I got a couple of surprises. The first unexpected revelation was that the side effects of radiation therapy to the brain may include a reduced tolerance for cold weather.
This seemed bizarre -- in fact, it seemed like the most bizarre statement I've heard all year. I couldn't figure out the mechanism. How does radiation make it more difficult for you to handle cold weather? I had the sense that I was getting a glimpse of a mutated reality where the known and expected universe skews into the improbable.
What I also learnt is that radiation to the brain can actually kill you, a point I don't remember anyone having made to me. What's more, death can follow long after your treatment ends. You can end up dying of radiation necrosis years after you were irradiated.
Did I get told that during the informed consent procedure? Maybe. But, if so, it's totally slipped my mind.
The problem with informed consent procedures is that they tend to be very easy to forget. Why? Because they are generally remorselessly low key, reminiscent of the perambulations of a hedgehog rather than the onslaught of Tyrannosaurus rex. Nobody who takes you through an informed consent procedure seems to have any grounding in the dramatic arts, so the potential firecracker negatives are delivered as so many damp squibs.
When overhearing an informed consent procedure for a blood transfusion, for example, I didn't hear the informer say "We have a statistical license to kill the occasional patient with this procedure, and maybe we'll kill you." Instead, what I heard was more along the lines of "Of course, there is a very slight risk of getting HIV or hepatitis, but the blood if very carefully screened, and we take special care with the blood given to chemotherapy patients, so the risk is minute."
Informed consent procedures would be more memorable if they were pepped up a bit. Think of the intellectual equivalent of hot curry rather than mashed potatoes. For radiation therapy to the brain, we could start the informed consent process with something from Wagner, something well-known so the patient isn't distracted by any "What's that?" thoughts -- I have in mind a piece which I think is called "The Ride of the Valkyries".
Then we could have a word flashed up on a screen in big red letters, the word being "nekros", the Greek for "dead body" (kettledrums in the background at this point, I think). This could lead naturally to "necrosis", the English for "death of a part of the living flesh", which can be used to introduce the subject of radiation necrosis.
Done properly, with a suitable array of multimedia effects and with canned laughter where appropriate, such a presentation could leave the patient with an indelible vision of doom: a world of damaged zombies staggering mindlessly out of the radiation suites, necrotic spaghetti churning feverishly in their brains.
(Strictly speaking, there is no scientific evidence for the claim that "This kind of treatment may potentially reduce your brain to spaghetti", but, in aiming for memorability, we have the whole world of horror movies to compete against.)
In looking for data on radiation therapy I ended up consulting two web sites, one, ww2.cancer.org, bearing the words "American Cancer Society, Inc." and the other, www.cancer.gov, bearing the words "National Cancer Institute".
On each, I found the same message about radiation necrosis: there is a small but real danger that radiation therapy to the brain may result in tissue death, which can conceivably lead to the patient's demise.
The American Cancer Society site says:
"Sometimes a large area of dead cells, radiation necrosis, forms at the site of the radiation. This occurs months to years after radiation is given. Patients with radiation necrosis generally do better than patients whose brain tumors come back. Nevertheless, a small number of patients with radiation necrosis do poorly or even die."
The quote is from:-
The National Cancer Institute site says:
"Radiation sometimes kills healthy brain tissue. This side effect is called radiation necrosis. Necrosis can cause headaches, seizures, or even the patient's death."
The quote is from:-
My own working assumption is that I'm not going to die from my upcoming radiation therapy. However, it's within the realms of possibility that I could suffer a degree of brain damage as a consequence. This helps encourage me to push ahead with the proofreading of my "Bamboo Horses" novel as fast as possible, hoping to get it done before I start going one-on-one with the linear accelerator.
The bad news is that even now there are occasions on which I feel brain damaged. That being so, how am I going to differentiate the consequences of X-ray damage from the ordinary functional deterioration caused by, for example, lack of sleep or disuse of the relevant fractions of the brain?
Today, for example, I found myself getting driven crazy by a hyphen problem. Should "34", as in "Chapter 34", be "thirty four" (no hyphen) or "thirty-four" (hyphenated). Both ways looked natural to me.
In the end, I grabbed hold of a book called "Style Book" (GP Publications, 1995), a book which I checked out of the library recently to solve precisely this kind of problem. The index had a number of entries for "numbers", including one which led me to section 3.50, which indicated that the hyphenated form is the correct one.
Daily life, conveniently, supplies us with a constant succession of small problems like this one, a procession which efficiently distracts the mind from larger conundrums such as "Am I destined to disintegrate into a writhing heap of necrotic spaghetti with a jellyfish IQ?"
Meantime, daily life continues, bringing with it daily events and daily conversation. Excerpted from the stream of daily conversation, a joke:
"Why is parenting like intravenous morphine? Because it's great stuff, but it's important not to exceed the therapeutic dose."
As for daily life, well, my mother has almost finished the embroidery for her latest tapestry, a wall hanging featuring pictorial elements which are symbolic of the lives of various members of the family.
For baby Cornucopia, for example, there is a version of Hokusai's famous picture entitled "The Breaking Wave Off Kanagawa", and a couple of other things, including the Chinese characters giving the name of Cornucopia's daycare center in Yokohama, which is, literally translated, something approximately like "Yokohama Beloved Children Garden".
Other symbolic elements for other members of the family include the Great Wall of China spilling down into a counterfactual bed of flowers. (While on a visit to China, my mother visited the real Wall, so knows that it doesn't really descend into a flower bed, but embroidery, like other fictions, allows you to revise reality as you wish.) Also on the wall hanging, there's a god, holding a fish.
"There's a pin coming out of that god," said my father.
And so there was.
My father, for his part, has just finished a bell rope, an elaborately spliced artefact which descends from the clapper of a kind of idiophone known as a "bell". This particular bell rope is destined to end up in the Maritime Museum.
The bell rope is, I guess, a kind of knot, or, at least, an artefact which is produced by the same skillset that is used to produce knots.
My personal world of knots starts and ends with the granny knot. Or does it? No. Now I think about it, I also know how to tie my shoelaces, and I assume that involves something which should technically be called a knot. And I assume the same can be said for whatever shape it is that I produce when I knot my necktie. But the world of knots is much more complicated than that.
My father has a huge book of knots on his bookshelf, "The Ashley Book of Knots" by Clifford W. Ashley which runs to six hundred and twenty pages, a book which introduces us to such delights as the kellig hitch and the four-strand backhanded splice.
This book was first published in 1944 by Doubleday, Doran and Company. The edition my father owns is a Faber and Faber reprint which came out in 1993 -- ISBN 0 571 09659-X. Opening it at random to page 530 I find a passage saying "There are four shivs to each block, but the fall is divided into two hauling parts and two standing parts".
I look at this and it makes no sense at all. Maybe because it's an intellectual artefact from a culture which is alien to me. Or maybe because my brain has done a covert transmogrification into something not quite cerebral. (I don't think so, but, then, I'd be the last to know.)
The text on this page is part of the cancer memoir "Cancer Patient" which has been posted online. All the chapters of this book are on this website and can be read for free online. However, the text is copyright - all rights reserved. For permission to use this text or any portion of it contact Hugh Cook.
This personal memoir of the writer's encounter with cancer (non-Hodgkin's lymphoma of the large B-cell type) attempts to cleave to the truth. However, the text may contain information that is wrong, outdated, incomplete or otherwise misleading.
This memoir has been written in a time of illness by a cancer patient who, though he feels sharp enough, must admit to sometimes misinterpreting things, forgetting things, or, on occasion, quite simply not hearing things.
This memoir is designed to communicate the writer's personal experience and is not intended as a source of medical information. Got a medical question? Ask your doctor.