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.
A confrontation with mortality. The author learns that there are no second chances. The cancer is in remission right now, but if it comes back then the probable outcome is death. This is both good news and bad news. Bad news, in that reality is fragile. The more probable outcome is death. Good news, in that we only have to do this once. The author receives a visit from his baby daughter, who then returns to Japan. The author intends to follow in December. Life is the living moment. Seize the day.
Climbing and falling,
Is pink enthusiasm
With angel wings:
White petals of angel wings.
My handwritten notes for day four say, cryptically, "Cut my to emails, working more by touch than by sight, a procedure which felt considerably dangerous."
I did e-mail somewhere?
Having looked at this in bafflement for some considerable time I finally click. Yes! That's it! Toenails! I cut my toenails! And I couldn't see where the scissor blades were, not exactly. That's why it felt dangerous. I kept expecting to slice into my living skin.
If you go totally blind, who then cuts your toenails? You? Or someone else? And are there maybe possibly perhaps special safety scissors for cutting toenails that you can't actually see? Unknowns which, all going well, I will never have to explore.
My notes for day four continue:-
My wife, who has never previously experienced spring in New Zealand, is suffering from some hayfever symptoms, eyes a little itchy and nose irritable. And mouth dry. My image of August in New Zealand is rain and mud, unrelenting rain, dampness and misery, but today has been gloriously blue and sunny.
I have been made aware of the fact that one of my supporters, who is in direct communication with the angels, has been interceding with the angels on my behalf, and perhaps this heavenly weather is part of the result. (Seriously: I am not a person of prayer, but, to those who did pray for me, and I know that there were people who did, my gratitude.) (And, seriously once again - has someone really bee interceding with the angels on my account? Answer: yes, indeed. Absolutely.)
After dinner, my daughter, evidently recognizing an obligation to provide practical support to her aged father in his declining years, brought me, one by one, a series of food offerings gathered from the floor: limp scraps of broccoli and tiny, tiny shreds of orange peel which it would have been impossible for me to find by myself with my dim vision.
Baby Cornucopia is running around gleefully with a piece of cardboard clutched in her fist, evidently a fragment which she has succeeded in tearing free from the spine of some unsuspecting book. The books have been jammed into the bookcase so tightly that she cannot get them out, but she can still attack the vulnerable spines.
"Cornucopia is endless," says my wife.
Never stops. Never ceases.
Before lunch, baby Cornucopia did reality TV training in my father's garden, and I got to practice the art of prising open her baby jaws to extract pieces of (possibly poisonous) green vegetation.
In the afternoon, I slept and the baby slept also. That was in the early afternoon. Later in the afternoon, my wife cooked chicken.
I sat in my father's big black leather revolving armchair and baby Cornucopia, working away industriously like a small pink mouse on a treadmill, pushed me round and round and round and round until I grew dizzy.
That day, she eats what we eat, pretty much, including yoghurt (which I don't eat), cheese (which I don't eat either), white bread and bananas.
When Cornucopia drinks milk, it's real cow's milk. She was breastfed (partly breastfed, baby formula always there to supply what nature could not) until shortly before coming on this trip to New Zealand.
Dinner for two at Sigdi's Indian Restaurant, with wine and funds (a birthday present) provided by my brother Charles. My mother, back from Waitomo, volunteered to watchdog the One Who Screams.
Tomorrow, a hospital appointment, originally scheduled for September 8, but unexpectedly rescheduled by radiation oncology for September 2. Those planning to attend are me, my father, my wife and my sister. Oh, and a doctor, presumably - I think Dr. Campbell, Dr. Gillian Campbell.
Tonight, in advance of the revelations of that appointment, Sigdi's. Tonight's wine, a sparkling white called Nautilus. Eat, drink and be merry, because tomorrow ... who knows? Tomorrow, I get to learn the contents of the mystery envelope: the results of the latest magnetic resonance imaging scan. There is going to be no way to rewrite what has already been written, what is waiting for me inside the mystery envelope. I know, basically, what it is, though. One of two options. Life. Or death.
One of those has already been chosen for me.
Our curry options are mild, medium or hot. We both choose medium. For me, "medium" proves to be fairly mild. For my wife, by contrast, "medium" proves to be fairly hot. Japan is not a land of hot curry eaters, and, although curry is fairly popular in Japan, it tends to be very much on the mild side.
There are, I am happy to say, Indian restaurants in Japan, real Indian restaurants which, like Sigdi's, are run by real Indian people, and part of my plan for my return to Japan involves dropping by at a cheap Indian eatery in the Iidabashi area of central Tokyo.
Revisiting the familiar world ...
Reactivating my life ...
If I have a life to reactivate. A question which is, until we know the results of the latest MRI, pretty much up in the air.
Heavy fog and a smash on the motorway (that is to say, on the freeway, the autobahn, the multilane motorized traffic-only highway - no pedestrians, no cyclists, no dung carts pulled by water buffalo - that is threaded through the city of Auckland and the surrounding territory).
Given the combination of fog and an auto wreck, there's no knowing what to expect on the motorway, so we go to Greenland Hospital first by an old-fashioned method called "walking" (left foot then right foot, repetitively) (memo to self: would it perhaps still be possible to patent this eco-friendly method of transportation?), then by ferry and then by bus, a "bus" being a passenger-carrying vehicle which, if you are lucky, will show up in accordance with the times printed on a semi-mythological document called a "timetable", a document which tends to have a decidedly uncertain relationship with the real world.
Today our bus did turn up on time and managed to find its way to Greenland Hospital without getting lost.
The journey gives me time to think of my illness and convalescence. As a consequence of which, the following lines make their way into my notebook:
Plugged with buttons of mud.
Notices the absence of laughter,
The shorn silence
Of the fractured ting machine.
We report, as ordered, to one of the reception areas, and, shortly, Dr. Campbell comes to collect us, and we follow her to an office. There is a desk. There is a piece of paper on the desk. It is the MRI report. It is very short and it is very simple. It is good news. There is, for the moment, no sign of lymphoma recurrence.
"Which means," says Dr. Campbell, "we are starting to think of Hugh as one of those for who we feel optimistic."
And note the key word here: "starting". After all I have bene through - surgery, chemotherapy, radiation therapy, physiotherapy - this is just a start. The end of the story has certainly not been wri8tten yet.
Someone is in the process of loading the MRI images onto the computer, and, after a short delay, this has been accomplished, and Dr. Campbell, evidently happy to be the bearer of good news, shows we picture after picture of my brain, some scars ... here ... and some more scarring ... here ... but, basically, a functional brain.
A golden moment.
Then we get down to some details.
I am planning to head back to Japan in December, following an eye operation, and I would like a list of the tests the doctors in Japan should be running on me, with an indication of when these tests should be carried out. Can do? Can do. Basically, MRI scans at three-monthly intervals for (if I remember correctly) the first year. Plus blood tests, including a test for LDH, which, if I follow what I'm being told correctly, is a marker for lymphoma.
I have a query on itching. I am having intermittent outbreaks of itchiness, including, on occasion, itching in my ears. Is this normal? Dr. Campbell confirms that, yes, itchy ears are a common side effect often experienced in the aftermath of radiation therapy. The reason for the itching is that the skin has dried out (and I, of course, had very dry skin to start with, since I am, naturally, a dry-skinned person, my skin perfectly happy in the torridly humid Japanese summer, but always unhappy in the dry Japanese winter).
The itchiness can be expected to last for perhaps twelve weeks after the end of radiation therapy.
It is suggested, perhaps jocularly, that I do have the option of pouring warm olive oil into my ears. I'll bear this option in mind, but I think I'll probably pass on it.
And now my big question.
"What are the chances of the cancer coming back?"
I listen carefully to the answer and take it down verbatim in my notebook.
"For the majority of people it does relapse ... it is really the next five years that are the high-risk period."
My thoughts go back to a meeting with the Porter team, a meeting at which I was told that my chances of still being alive five years out were forty percent.
"And if it recurs?"
If the cancer recurs, there will probably be more chemotherapy. Not, however, more radiation therapy, because there are "significant downsides" to adding more radiation. The nature of the "significant downsides" is not spelt out, but, by this stage, I figure I've read enough about radiation to be able to make a rough and ready guess.
At this stage, my sister, a sometime oncology nurse who has had the experience of attending the funerals of a number of her patients, has a question.
"If the cancer were to recur then would I be right in understanding that any chemotherapy would be palliative?"
Dr. Campbell confirms that this is so.
"You might beat the statistics, of course," she says. But. statistically, if the cancer comes back then you are dead.
If the cancer came back then chemotherapy would be tried. You are likely to get a response to a second line of chemotherapy but the lymphoma would not disappear.
If the lymphoma recurs then the progression can be very swift, resulting in death in a few weeks without treatment to a few months with treatment.
"In general, it is not possible to achieve a second remission."
Essentially, then, a recurrence would mean that there would not be much time before a fatal conclusion.
"So," says Dr. Campbell, smiling. "Seize the day."
A Roman sentiment, unless I am mistaken. A sentiment 8899appropriate for the moment. A touchstone for living by.
This is, I think, what we came here for, this process of revelation, of confronting what is (I am alive) and what may be (the future is a possibility, not a promise). And I find myself, at one and the same time, both intensely sad and yet glad.
I go through a moment of the most enormous sadness as I contemplate the prospect of my own death.
During the course of this siege of illness, I have been through a number of emotions, but this is my one moment of utterly inconsolable grief. I think part of the reason why I am liberated into this experience of grief is because I am not actually dying, at least not for the moment. It is a kind of movie theater grief, a spectator's grief. A spectator's emotion, not a participant's emotion. If I'd actually found myself to be dying, then such a wholehearted grief would have been a luxury I would have been unable to afford. I would have needed to conserve my emotional resources for facing up to the prospect of the endgame.
In addition to my wave of extravagant grief, I also feel a kind of gladness. Win or lose, at this stage the game is essentially over.We only do this once. I am not going to end up spending a substantial proportion of the rest of my life going through an unending cycle of treatment, remission, relapse, treatment and remission.
The die is cast.
The outcome has already been decided, and the nature of the outcome will become clear enough in time. Five years from now, at the latest, I will know, one way or the other, pretty much for certain.
In my moment of sadness, I say nothing, and the moment passes, but my father has something to say. He wishes to express his gratitude for the manner in which Dr. Campbell has leveled with us. Because, when his sister Joyce was suffering from lymphoma, it was never possible to get her survival chances clarified.
And I remember years back to a date some time in the Twentieth Century. My Auntie Joyce, her lymphoma then in remission, had come to New Zealand from England on holiday. As a group - me, Joyce, my father and perhaps one other person - we drove to the top of the miniature volcanic cone known as Mount Eden.
From the top of Mount Eden it is possible to look down into the crater. At that time the slopes were rough and grassy, a bit slippery here and there, the footing not quite stable. My Auntie Joyce conceived the ambition of going down to the bottom of the crater. Was this doable? I thought it was, so we took a chance and went down together, Joyce and me, very slowly, very carefully, and then ascended again. Another tiny moment of triumph in the unwritten history of our family.
Later, for her, the lymphoma returned.
My aunt's treatment, I gather, was suboptimal; mine, however, I cannot fault. And my father expresses his gratitude for the way I have been treated, for the good care which has been taken of me. He says a special word of thanks for the performance of the reception staff at oncology at Auckland Hospital, always cheerful, always expecting me and recognizing me and greeting me by name.
We move on to business.
It is now early September. I have an appointment with the Porter team in October. In November, I will have my next MRI, here in New Zealand. By early November I should have an appointment associated with the next MRI. If this does not materialize for some reason, then I should ring Wendy. Do I have Wendy's phone number? I do.
Before departing from Dr. Campbell's office I received a copy of the MRI report, mine to keep, and before losing the copy (which didn't take me very long) I succeeded in copying the key passage into my notebook, the passage which says "There is no evidence of lymphoma recurrence ... The eyes appear normal."
(The eyes most definitely are NOT normal, but, as Dr. Campbell says, the MRI does not pick up fine detail.)
Just to wrap up, by the time I head back to Japan I should have copies of all my key medical documents, plus, additionally, some kind of simple list of what tests should be done when. Dr. Campbell said "we" back in Auckland, New Zealand, would be interested in receiving reports of my progress. Then realized "But of course they'd be in Japanese!" I said if I got my hands on any reports in Japan I'd happily get them translated and forward them to New Zealand.
Sunny again. Coffee out with wife at a Devonport cafe. We looked at crayons in a toy shop, but, according to the packaging, the starting age for using crayons is about two: Ms. Picasso is still a little young.
Day 8 continued with a visit to the zoo, where baby Cornucopia enjoyed, in particular, her jam sandwich.
Baby Cornucopia seemed very happy at the zoo so I contemplated the possibility of leaving her there to pursue a hunter-gatherer existence. But I was dissuaded from such a course of action by the two shoes that I saw and photographed, one an abandoned baby shoe lying on the path, the other a teenager's shoe floating, sans teenager, in the hippo pool. Something too sad about those shoes of abandonment.
The Shoes of Abandonment
The shoes of abandonment
Of the loyalties of life.
Baby Cornucopia amused herself by pulling tissues out of the tissue box, one by one, and putting them in the waste paper basket. This was fine by me but my wife disapproved.
Today we all felt a little slow and dull after yesterday's big day out at the zoo. The brilliant weather continues.
This evening, for the first time in her life, baby Cornucopia was confronted by ice cream, a substance which, though it exists globally, has never found its way to her dinner table in Japan. After three extremely thoughtful mouthfuls, baby Cornucopia came to the conclusion that ice cream is a Good Thing, and began to eat with velociraptor enthusiasm.
In the background of my mind, New Orleans - the flooded city, corpses drifting unclaimed in muddy water, the unfolding news story of the hour.
[Later: news eventually trickled through to us concerning the fates of the very few people we know in the Mississippi area, and they, it seems, got off lightly. The family living in Slidell, very near the shores of Lake Pontchartrain, evacuated to the state of Alabama at the invitation of neighbors who had a holiday home there. As it happened, their house in Slidell came through the hurricane just fine apart from one problem: a large tree came crashing down on the roof, demolishing its way into the house. As for Marie, whose hospitality I enjoyed years ago during the course of one of my visits to the States, her house in Laurel, Mississippi, was only very slightly damaged.]
It is now some months past baby Cornucopia's first birthday, but, even so, today she had a party to celebrate her first birthday. Someone kindly gave her a mouth organ: her first musical instrument. A star is born! No recording contract, as yet, but she will be able to entertain the other passengers on the flight back to Japan tomorrow.
A major bargain, the baby ticket: for ten percent of the adult fare you get a bassinet (ten kilos maximum baby weight), a ten kilo baggage allowance, free (additional) carriage of a stroller (a pushchair), and proper baby food meals in little glass jars.
All in all, baby Cornucopia's visit to New Zealand has been a success, with the familiarisation curve not too steep. Though I must admit to having been tired. I still have some months of recovering (and a serious eye operation) ahead of me. That said, things are looking pretty good at the moment.
In the last hour of the night, we are driving to the airport when suddenly, without warning, without reason, my father pulls in to the side of the road and stops in a nowhere place, and I have a desolating vision of abandonment and loss, of abandoned shoes, of addled waters, of smoking silences.
"Blurred," says my father. "Need to clean my glasses."
And he does so. He cleans his spectacles and then we drive on, into a world poised uncertainly somewhere between darkness and dawn.
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.