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 an eye check and is found to have cataracts in both eyes. After so much has happened, the diagnosis of cataracts pretty much falls into the "So what?" category. A poem, "After I Was Diagnosed". More about the linear accelerator. The smell of radiation and the color of radiation. Thanks to the radiation therapy, fatigue has set in, and the author's forehead is red and angry. The author's thoughts turn to his daughter, living separately in Japan.
AFTER I WAS DIAGNOSED
After I was diagnosed
Was hoisted above the city.
Confetti clips stretched my fragments
From mountain to mountain,
Gray with gristle, white with bone,
With arterial cherry blossom.
The Committee on Public Decency
About certain aspects of the view.
And so I dominated,
A threat which might fall
But maybe not.
Later, I lost the limelight,
My public distracted
By beached whales, biowar babies,
Chicken flu plague threats,
Ponzi scheme panics,
Giraffe-flavored liquorice fritters
And alcoholic concrete.
Then hobbyists discovered
Riddled with illicit junctions,
I am alive with bootleg MP3s,
Swarming with patent contests,
Amok with litigation.
My head is a public telephone.
God broadbands in and asks me for my wisdom.
Which is this:
It is better to be dissected than forgotten.
* * *
Friday 01 July 2005.
In some literature that I received from Auckland Hospital, the linear accelerator is described as "imposing". And so it is. A huge hulk of machinery, Hell's X-ray machine, monolithic metal ready to conquer the world.
The machine sprouts up out of the floor like a hugely thick axe handle, too impossibly big to hug, squat and high tech. Emerging from the shaft is not an axe blade but the huge circular head of the linear accelerator. The business end. The part that produces the beams of radioactivity.
When I started treatment, the radiation therapists would exit the room, the head of the linear accelerator would zap me from my right side, then the radiation therapists would return to the room while the massive head swung above me and positioned itself on my left, ready for the second beam. (The beams, shooting in from the side, graze the back of my eyes without penetrating the front of the eyes.)
At first I thought it was a technical necessity for the radiation therapists to return to the room while the head of the linear accelerator moved from one position to another, but apparently that's not so. Their return is a psychological ploy, a bit of hand-holding, because some people don't like to be alone on the hard table when that huge mass of inexplicable science fiction equipment swings over them.
But, after I'd had a few accompanied sessions, the therapists asked me if I was prepared to experiment with being alone in the room while the head swung over to reposition itself, and I had no problem with that.
While I write that "the head" moves, actually it's the whole structure of the linear accelerator that moves, the thing pivoting as a unit. But, when I'm flat on the table, it's the head that I can see moving over me, a blurred destroyer ("blurred" because I'm not wearing my spectacles, which I've taken off so my clear plastic mask can be fitted to my skin).
* * *
Thursday 07 July 2005
The toilet flushes and there is the smell of chlorine, which, for me, has become the smell of radiation. The smell of radiation is that of swimming pools and the color of radiation is violet.
The chlorine-like smell is manufactured by the X-rays from the linear accelerator in Treatment Room Six. The radiation ionizes molecules in the air, creating the smell. The violet tinge is caused by the X-ray beams interacting with the backs of my eyes, first shooting from the right and then shooting from the left.
Today's treatment is the thirteenth of twenty. So I'm more than half way through my radiation therapy. My forehead is flushed red as if from sunburn, and I've been regularly applying aqueous cream to try to lessen the irritation. The top of my head feels hot if I touch it and also feels hot if it presses up against a pillow in the night.
My main problem is eating. It's important not to lose weight during radiation therapy but I'm finding it difficult to stomach food. I'm taking Maxolon (metoclopramide) three times a day to suppress nausea, and on a couple of days I've also taken a tablet of Zofran (ondansetron) to supplement the anti-emetic effects of the Maxolon.
I'm also using an ophthalmic steroid again -- I'm using Pred Forte (prednisolone acetate) eyedrops, as prescribed by an ophthalmologist, four times a day in the right eye to damp down an eye inflammation.
(My spell checker suggests "red predispose" for "Pred Forte" and argues that "metoclopramide" should be "Mesopotamia".)
My wife writes (June 25th):-
(In the below, "water pox" denotes "chicken pox"):-
"On Friday I took Cornucopia to the child clinic to get the injection against water pox (mizu bou sou). She was brave and didn't cry. She is a daughter of you and that why she is brave and strong. Wonder baby Cornucopia!"
Well, I have no doubt that my daughter is both brave and strong, but I feel neither. Instead, I feel flat, profoundly tired of not feeling at home in my own body, distressingly ungrateful to be alive. Wearied by the thought of the never-endingness of the aftermath of treatment.
Currently, I have a small patch of cataract on the lens of the right eye and a rather more significant patch of cataract on the lens of the left eye, these having been detected for the first time during an eye examination on Thursday June 30th.
"Are they progressive?" I asked.
"All cataracts, by their nature, are progressive," I was told.
My radiation oncologist, Doctor Campbell, later told me ("later" being this week, on Tuesday July 5th) that the cataracts have shown up too early to be the consequence of radiation. Yes, she expects me to develop cataracts in the long term ("months, years") from the X-ray beams which are impinging on the backs of the lenses, but my present cataracts are undoubtedly the consequence of steroid use. (In addition to using steroid eyedrops, I had a steroid injection into each eye while in Japan.)
Similarly, it's too early for the radiation to be having any effects on my mental competence. Again, any downside will show up "months, years" into the future. So any mental glitches that I've noticed are most likely a consequence of lack of concentration caused by radiation-induced fatigue.
The fatigue is right now, and is real. I'm told it will persist for two to three weeks after radiation therapy ends. And, during those two to three weeks, my hair will probably finally fall out. Joys to look forward to.
When I showed up at Treatment Room Six today my forehead was distinctly angry, red and itchy with a radiation reaction -- I suppose it would be unscientific and histrionic to call it a radiation burn.
The radiation technologists were concerned, and one talked me into seeing a nurse, then persuaded me to wait a little longer to see a doctor. People react differently to radiation but my lobster red was apparently a bit extreme. (It may be relevant that I have extremely dry skin.)
"I'm sorry for being a bad patient," I said.
"We don't have bad patients," said the radiation technologist.
But I was definitely in a "bad patient" mood, not keen to be investigated, diagnosed, advised or prescribed for. I'd rather just crawl under my eiderdown and sleep for a few days, and hope the problem would go away. Yes, a bad patient, not wanting to be helped by the kind, concerned, compassionate people around me.
I shortly (considering this consultation was unscheduled, my waiting time was extremely brief) got to see a cheerful and efficient doctor whose name sounded something like "Muircroft" and who gave me a script (a prescription) for a hydrocortisone cream (one percent) to use sparingly, twice a day, on my inflamed forehead and on the diseased lesions on my forearms. For the legs, I'm advised to see how I go with aqueous cream, and, if I continue to have problems, see a dermatologist.
The lesions, scabby sores which have been evident on my arms and legs for some weeks now, are probably some kind of eczema. I asked what a dermatologist might be able to do for me, but Doctor Muircroft declined to give me an opinion, on the grounds that dermatology was not her specialty.
I also got a prescription for thirty cetirizine tablets, "anti-allergic" tablets marketed under the name Razene. ("Raze?" queries my spellchecker.) The small print includes the information that each tablet "also" includes, amongst other things, talc and titanium dioxide. The real fascinating bits are the details, right?
Home from hospital by car in the rain.
This afternoon, my parents went out to a musical appreciation event, while I stayed home and played a CD and watched my screen saver sift through the memories of my life, surfacing pictures from Kyoto, Tokyo, Japan ... surfacing other seasons, other years ... rain outside ... a gray universe of clouds weeping ...
I made a note today about my daughter, she "for whose sake I vowed to survive".
For whose sake I vow.
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.