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.
In the aftermath of his brain operation, the author is advised by his mother to cover his Frankenstein scar if he goes out in public. The author attends a family dinner and, at that dinner, indulges himself in speech making. The author is calm, a rocket committed irrevocably to its trajectory, the arc of the journey impossible, now, to alter. The outcome entirely beyond the author's control.
The preceding chapter mentions "an IV needle sitting in the crook of the left elbow". As the term "needle" may perhaps suggest, I was thinking of the things that were being stuck into me as steel needles. In point of fact, though a steel needle might be used to make the insertion, typically the steel would then be withdrawn, and what was left in place would be a piece of plastic, a hollow tube called a cannula. However, I didn't work this out until much later.
* * *
My clinical summary, when it arrived in due course by snail mail, told me about my "Craniotomy biopsy of brain", an operation attributed to a surgeon whom I have no recollection of ever having met.
The clinical summary found me lexically challenged, and I had to look up "hemiparesis" in the dictionary, where I discovered that "paresis" is, approximately, something like "partial paralysis" and "hemiparesis" means something like "partial paralysis of one half of the body", in my case the left half. Even though I had spent seven years in Japan as a professional English teacher, teaching everything from "Baa Baa Black Sheep" to the little teapot song, I was far from possessing a total mastery of the vocabulary of the English language, and, for me, being a cancer patient was, in part, an experience in vocabulary building.
The clinical summary stated, in part:-
"This 48 year old man was referred to us by Oncology for biopsy for L frontal lesion. He initially presented Neurology with hemiparesis, bilateral posterior uveitis and rapidly worsening vision in L eye. MRI revealed intracerebral lesion, thought to be perhaps CNS lymphoma.
"Surgery went ahead as planned on 17/1/05 and procedure was uneventful. Mr. Cook recovered well from his operation and is now fit for discharge home. He has had a staging CT scan of chest, abdomen and pelvis prior to discharge.
"We are awaiting the formal pathology result and he will be followed up by oncology on Monday 24th January 2005."
* * *
Friday 21 January 2005. 0801.
On discharge day at the hospital (Wednesday) they told me I had a choice about the operation site: take off the dressing and leave it bare or cover it with a fresh dressing (they gave me some spare dressings to take with me).
Yesterday, my mother took off the dressing.
"If you're going to go outside with that I think you should put something on it out of consideration for the general public."
"Is it bad?"
"Take a look in the mirror."
I do, and we're in Frankenstein territory. It doesn't disturb me personally, but I can see that it's gross-out territory. A big swathe of hair is missing front right, and, up on the skull, there's a raised black ridge with cartoon stitches on the side.
When I went up to Catherine's I wore a hat. The wound was oozing a little in the evening so I got my mother to put on a new dressing to protect the pillow. No pain.
Today my alarm went off at 0700. I've resolved to get up at 0700 every day. Late, I'll try to put a little more structure into my life, but to do that I really need a program from my cancer docs: what and when?
Got a call from the hospital yesterday confirming my next cancer doc appointment: Monday 1030.
Event today: first bowel motion since leaving hospital on Sunday. On discharge from hospital I got a dexamethasone info sheet which said that one of a list of "rare" side effects "which should be reported to your doctor" is "Bloody or black tarry bowel motions", but today's event looked healthy, normal.
Little odds and ends keep reminding me of the operation. First night home, in bed I discovered yet one more plastic dome stuck to my abdomen, a connection for a heart monitor lead. When I washed my hair after my mother took off the first dressing, the water became reddish with blood.
My mother told me to come knocking on the bedroom door should the wound break open and "flood" during the night, a highly unlikely event. And I've just found out that she did wake during the night thinking it was me knocking urgently on the bedroom door, but it was just my father coughing.
The whole time I was having a cruisy, relaxed, largely anxiety-free time in hospital (anxiety-free, at least, from the moment I woke up after the operation) my mother was enduring the stress of the unknown at home. Making small miscues like putting the garbage in the wrong bin. (There's a sorting system in this household: paper stuff, stuff for the composting bin, and unburnable stuff such as bits of tin.)
I am relaxed, launched on my trajectory, whatever it is, and strapped in for the ride. But my wife, sister, mother and father are, in their various ways, suffering.
* * *
The image of being a rocket launched on an uncontrollable arc was the one which dominated my image-making about my cancer. This image formed itself very shortly after my diagnosis.
As for the people around me suffering, I was surprised by the extent to which this happened. In particular, I was surprised by how strongly my sister felt about things. I was not exactly happy with the possibility that I might die, but my sister seemed heartbroken at the prospect. Why heartbroken? I have no idea. Sad I can understand. But not heartbroken. This was, to me, one of the mysteries of the situation.
Most of the things that happened to me during my cancer treatment were predictable and intuitively obvious. The most surprising thing and (for me) the least intuitive, something I probably would not have guessed at if it had not been patently obvious, was the suffering of others.
I suppose this leads me in the direction of concluding that I am not strong when it comes to the business of forming a concept of how I figure in other people's minds. I can do it, up to a point, but I think it's something I do slowly, and not always accurately. Is this just me or is this how the human race is wired? I quite simply don't know.
Leaving aside the issue of mortality, the issue of life and death, being a cancer patient did not really lead me into the arena of deep thoughts. Many thoughts, yes. But not deep thoughts. However, the question of how I am modeled in other people's minds, and the extent to which I do or do not perceive that modeling -- that question strikes me as being intriguing, and something to chew on.
A novelist's question, really. All these characters walking around the local planet, each modeling and remodeling reality in their heads -- to what extent do they perceive how they are modeled by their fellows? And how accurately do they model the people around them?
Something to chew on, yes.
Assuming I have the years in which to chew.
* * *
Anyway, the neurosurgery patient had been released from the hospital, and so it came to pass that Frankenstein's monster came to walk the streets of Devonport.
Sometimes, when I went out, I was wearing not a hat but a large white bandage on my scalp. This occasionally attracted attention, once again raising the issue of exactly what I should say, who I should say it to and when I should say it.
For example, I'm in a book shop and the woman who runs the place, who is friendly and forthcoming in a manner which is not unusual in Devonport, asks:
"Did you hurt your head?"
"Sort of. I had an operation. It's a long story."
* * *
Saturday 22 January 2005.
1. Body: at peace.
2. Mind: feels okay until I have to interact, then I realize the inputs are tiring.
3. Mood: maybe a little bit anxious, thinking about Monday.
4. Eating: okay.
5. Drinking: find I don't like the taste of tea or milk. Tried tonic water with lime juice yesterday: good.
[I was starting to experience quirky taste changes as a consequence of using the oral steroid dexamethasone.]
Anxious about Monday, the second cancer doc meeting, because I understand that there is a bit of a waiting list for lymphoma treatment, and my chance of leapfrogging into fast treatment depends on their being a match between my precise kind of lymphoma and a new therapy regime for which they are trying to recruit people.
Also, I don't know what the recent CT scan of my chest, abdomen and pelvis might reveal. Maybe very bad news.
Took some sun today for vitamin D, and it felt just wonderful. Great summer weather right now. With flies.
[Note: the sun causes cancer, and any vitamin D benefit peaks at ten minutes. Exposure beyond ten minutes adds no further vitamin health benefit.]
Took dressing off early, showered and left head bare, but mother will put on another dressing before we go up to Catherine's place for a big noisy family dinner. This will be my one and only event for the day, and I'm resting up for it.
[Very soon after my diagnosis I adopted a deliberate "do less" policy, aiming to work within my limits and avoid any effort which might push me in the direction of the red line of my absolute uppermost capacity. This was a natural decision to make at the outset in view of the fatigue I was feeling, and, in retrospect, the decision to adopt "Do less!" as my motto was a very sound one.]
* * *
Sunday 23 January 2005. 0755.
1. Body: fine. No hangover. Eyes blurry.
2. Mind: clear.
3. Mood: pretty much at peace.
4. Eating: good breakfast appetite.
5. Drinking: no desire to drink but will do so as a discipline, two to three liters a day to wash down the dexamethasone.
[One American pint is 0.47 of a liter and one American quart is 0.95 liters. Consequently, two liters is a bit over 4.25 American pints or a bit over two quarts. Very roughly, then, one liter is about American quart, so in American terms I was aiming to drink about two or three quarts of water a day (this on medical advice). Note that traditional British pints and quarts are slightly larger than their American counterparts.]
Yesterday afternoon. Saturday. Having left my Frankenstein scar bare to the air all day, I have my mother civilize my scalp with a fresh white dressing then walk up to my sister's place. Slowly.
Sister Catherine's house flows out smoothly onto a wooden deck and from there into the back garden, and it is on the deck that we have dinner on a perfect summer evening. There is only the lightest touch of a breeze and there are no mosquitoes.
There is me, my parents, Catherine, Catherine's husband Alan and Catherine's two young children. The party is enlarged by the arrival of Alan's parents, Mary and Angus, and his sister Lindsey, all three having come from Canada for a holiday.
Having rested up all day for this, I am feeling good and people tell me I am looking good, and it is a great evening, socially effortless, everyone happy, the children entertaining us with a "performance" (song and dance), really working well together as a brother-and-sister team.
And great food, wonderful chicken and a great salad and baked potatoes and grapes and so on, and I load food into my stomach, and it sits well, and I drink white wine through the meal, further lightening my mood.
(Red used to be my favorite, the stronger the flavor the better, but the dexamethasone has changed my sense of taste, and now red wine is something I have given up on, after having twice had to abandon a glass of Merlot, finding the red fluid offensively foody.)
There are speeches, none long, all well-received. Catherine declares me the guest on honor, and makes a short speech about how I am loved and respected. In response, I make a short speech about my brother-in-law, Alan. Alan is on holiday, but still has to finalize a work roster before flying off to Wellington tomorrow for a short getaway break with his sister and son.
How come Alan's work is not done? Because Alan is always doing things for other people. And what do I hear people say about Alan in hospital? I heard them say "Alan's a great guy".
This was very sincere, and I thought it would do Alan good to know what people are saying about him when he's not there.
Later, I made another short speech, which was basically: I don't believe in saying that bad things are actually good things. But because of what's happened I have had the pleasure of seeing my daughter integrated into the family, and become a real member of the family. And that has been a really big thing for me.
And we toasted my daughter.
* * *
Sunday 23 January 2005.
Sister Catherine remarked today on how calm I am, and I explained that it's because I have no decision junctions left. I'm launched on my trajectory, outcome beyond my control.
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.