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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:-

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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.

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Chapter One

Summary

In April 2003 eyesight problems begin while the author is living in Japan. These eyesight problems (which ultimately prove to be due to cancer) are initially misdiagnosed as cataracts.


        My problem began in April 2003. At that time, I was living in Japan and was teaching English for a company which was based in Tokyo. I was married to a Japanese woman, whom I will call Murasaki-san and we were living reasonably happily in a house in Yokohama. I was forty-six years old and had settled fairly comfortably into an uneventful middle aged existence.
        At the time, I was conscious of only one identifiable problem in my life: despite having been married in the year 2000, my wife and I as yet had no child. However, I assumed (correctly, as it happened) that the child-sized gap in our lives would be filled in due course, and I personally was not unduly fussed about the delay.
        On a theoretical level, I was aware that my life might at any moment be derailed by a disaster. The most likely candidate for this disaster was a major earthquake. It is reasonable to presume that the Tokyo-Yokohama area will eventually be hit by a cataclysmic earthquake, and that this earthquake will lay waste to this huge urban area, killing thousands in the process.
        In preparation for the disaster, we had put together an evacuation kit, and kept the contents of this in a small backpack which lived under an armchair in the master bedroom, ready to be grabbed at a moment's notice. It included a radio, spare batteries for the radio, a flashlight, some water and some food. Additionally, we had extra water stored in three large plastic containers. How much water? Sixty liters -- almost sixteen American gallons. (One American gallon is 3.79 liters.)
        We lived, then, with the knowledge that our comfortable lives might be destroyed by earthquake or (to canvass a less likely possibility) war with North Korea. (Scenario: North Korea nukes Tokyo.) Or our world might be overthrown by a new global influenza pandemic. Or whatever. In the privacy of your own imagination you can always find the materials for your own disaster movie, if you are so inclined.
        However, the reality was that, day by day, the earthquake, like all the other potential disasters, failed to eventuate. It was remote from immediate reality, as remote as the probability that we would (one day) die of old age.
        Then my eyesight collapsed.
        My eyesight problems came out of nowhere, with no warning. The disaster unfolded over the course of a few days. First, my entire visual field started to waver, as if an imaginary heat shimmer was causing the universe to buckle, and then I lost the ability to focus properly on anything if I was looking directly at it.
        At the time, I had no theory which could explain this problem, and, even now, I don't have a hypothesis which would explain the precise mechanics of what was going on.
        Later, while exploring the world of eye problems on the Internet, I came upon the case of a man who suddenly developed transitory problems with visual acuity. I think he ultimately proved to have lymphoma. But what was the cause of those transitory problems in the early stages of his disease? The medical team in charge of his case could not arrive at a firm answer, but speculated that the problem might have had something to do with the blood supply to the macula, the central portion of the retina.
        Anyway.
        I still don't know exactly what happened to my eyes back in April of 2003, but the result was that I had difficulty focusing on things that were directly in front of me. This problem developed over the course of just a few days and affected both eyes.
        Finding myself with an eyesight problem, I decided that I should see a properly qualified eye doctor. Quickly. At the time, that seemed to me to be an entirely reasonable decision. And, in retrospect, I can find no fault with it. Got an eye problem? See an eye doctor!
        That left me with a small problem: how does an English-speaking Westerner with indifferent Japanese language skills find an eye doctor in Japan?
        Ever since I was a child, I've had problems with my eyes. I'm extremely short sighted so I've needed to wear spectacles. Anyone with a high degree of myopia should really make a point of seeing an ophthalmologist on a regular basis, but I had not seen an eye doctor since 1988, at which point I saw Dr. Lindo Ferguson, who recommended that I switch to bifocals, a piece of advice that I rejected.
        Because I had made no effort to get my eyes checked, I did not have an ophthalmologist in Japan. To find one, I followed the same procedure that I had used earlier to find a dentist.
        I hate going to the dentist. Accordingly, after arriving in Japan on May 4th, 1997, I made no effort to find a dentist. I figured I didn't need one. I changed my opinion rather quickly when I was flossing my teeth one day and a tooth suddenly broke in half.
        At that point, I opened up my copy of Town Pages, an English-language telephone directory. I found a dentist who claimed to be able to speak English, went to his surgery, made an appointment and got total satisfaction.
        In my quest for an eye doctor, it seemed reasonable to proceed similarly. So I opened up my copy of Town Pages and found an ad for a guy who claimed to be an ophthalmologist and who claimed to be able to speak English. I phoned and made an appointment and was very soon being examined by this gentleman, who I shall call Dr. Quack.
        This guy was in fact a quack, a charlatan who knew about as much about ophthalmology as an orangutan does, but I did not initially cotton on to this. In fact, the notion that my doctor might be a fraud never occurred to me.
        Up until that time, in my entire life I had only ever dealt with one ophthalmologist, Dr. Lindo Ferguson, a man for whom I had the utmost respect, and my respect for this particular individual had generalized to encompass the eye doctoring profession as a whole.
        At a guess, my father is a man who has very few heroes. I don't imagine that he feels the need for any. Consequently, what impressed me as a child was the admiration my father expressed for Dr. Ferguson.
        At that time, we lived way out in the country, over two hours by road from the city of Auckland, New Zealand's largest city. But my father figured (correctly) that his children would ultimately end up living in Auckland, and so had decided that it would be best for us to see an Auckland-based ophthalmologist. So, every so often, we made the long pilgrimage south to the big city, where one of the attractions for us kids was that we were able to ride on escalators, marvelous moving mechanical stairways, which were nowhere to be found in the rural environment where we lived.
        Now, what impressed my father was that, at every appointment, we always had Dr. Ferguson's full and unstinting attention, and there was never ever any sense of rush or hurry, even though Dr. Ferguson must have had a fearfully busy schedule, because, in addition to being a busy ophthalmologist, he was also the deputy mayor of Auckland.
        Although we were the nobodies from nowhere, insignificant hicks from the sticks, we were always received with unfailing courtesy ... and my father's reaction to this gave me, in my childhood, both a sense of how it was appropriate to treat people, and also, as explained above, an exaggerated respect for the eye doctoring profession.
        My first Japanese eye doctor, Dr. Quack, was a man in perhaps his mid-fifties. He had an acceptable command of the English language and was as impressive as they come. He was of dignified bearing and severe countenance and seemed to take himself fairly seriously. He had all the standard eye doctoring tools, including a slit microscope with a very bright light, and he did standard tests that I was familiar with.
        He also took a photograph of the interior of my eye.
        Nobody had ever done this before, and I was enormously impressed by the whole procedure. I sat myself down in front of a huge big machine and an enormous flash went off, obliterating the world with light. And, later, Dr. Quack showed me a huge photograph of the interior of my eye, laced with fine red blood vessels. He didn't explain it to me, but he showed it to me. And I allowed myself to be impressed by this bit of witch doctoring.
        On the second or third visit, Dr. Quack finally came up with a diagnosis. I had, or so he said, cataracts.
        There was a problem with this diagnosis which I registered at the time. A cataract is a deterioration of the lens in the eye, and my understanding is that this condition generally comes on slowly, over a period of years rather than a period of days. My own eye problems had come on suddenly and without any identifiable external cause. I could not reconcile my concept of the slow-growing cataract with the sudden onset of my problem.
        I concluded, therefore, that my concept was wrong. After all, I was just the patient. The doctor, by contrast, was a doctor. His role was to instruct. Mine was to receive instruction.
        Initially, then, I was acting from a position of pretty much complete faith in the medical profession in general and in the eye doctoring subset of that profession in particular. I started from a position of complete trust but my trust got trashed, and Doctor Quack was the person who did the trashing.
        What made Doctor Quack think I had cataracts I have no idea. He never explained. He did show me the photograph, true, but he never went into the details of why it was significant. In the months ahead, I had my eyes examined by a number of ophthalmologists, and none of them volunteered the information that I had cataracts. One of them, Dr. Kiwi, when specifically asked about cataracts, said "I do seem to see a small patch of cataract in one eye. But it doesn't seem to be progressive so don't worry about it."
        True, in July of 2005 I did finally get a "you have cataracts" from a New Zealand ophthalmologist, but those cataracts were in their early stages and were not causing me any problems. Additionally, the cataracts of 2005 had an understandable cause: by that time I had undergone steroid injections into the tissues around each eyeball, and I had also used steroid eyedrops, and steroids are capable of causing cataracts.
        Anyway. In April of 2003, long before I started using ophthalmic steroids, Doctor Quack wrote me a prescription for two kinds of eyedrops. He did not explain what the eyedrops were and I was too intimidated to ask. There were red eyedrops and clear eyedrops. The red eyedrops were to be used twice a day and the clear eyedrops were to be used every two and a half hours.
        I eventually found out that the enormously impressive red eyedrops were just some kind of vitamin. As for the clear eyedrops, I never found out what those were, but my speculation is that they were some kind of steroid.
        When I filled the prescription for the clear eyedrops at a pharmacy, I was asked to fill in a form which required me to provide a bunch of data about myself, including my weight. I refused to fill in the form and eventually, having let my bad temper show, succeeded in having the prescription filled without providing the data, but the experience led me to suspect (rightly or wrongly I do not know) that Dr. Quack had perhaps chosen me for some kind of experimental treatment.
        Anyway.
        Trusting to my doctor's wisdom, and never suspecting that my doctor might be less than he seemed to be, I filled the prescription, started using the eyedrops and told my wife what the doctor had told me.
        Cataracts!
        It sounded to me like the end of the world. My health was broken. My life had ended. I wept. My wife comforted me, and I drew strength from her comfort.
        In retrospect, I can't understand why I was so upset. A cataract is usually a fixable condition. For a few thousand dollars, the deteriorated lens can be removed and replaced by an artificial lens. It's routine surgery.
        In retrospect, I also can't understand why I didn't go online to research the subject of cataracts. After all, I had a computer and a broadband Internet connection. I guess the answer is that I had faith in my eye doctor and trusted that I would learn what needed to know from him.
        Potentially, Dr. Quack could have killed me. I had brain cancer and my eyesight problems were an early sign of that cancer but he had misdiagnosed the problem as cataracts. However, fortunately two things happened. The first was that my eyesight deteriorated sharply. The second was that Dr. Quack panicked. The result was that my doctor-patient relationship with Dr. Quack came to an abrupt and permanent end.
        After I had been using both the red eyedrops and the clear eyedrops for a few days, my eyesight got markedly worse, so I very naturally made an appointment to see Dr. Quack. His reaction (which I interpreted as panic) was to send me to see a colleague of his.
        I think the colleague was an optometrist rather than an ophthalmologist -- a technician, that is, rather than a medical doctor. I arrived at the premises of this optometrist, who I shall call Mr. Goodman, early in the evening, pretty much at closing time.
        By rights, Mr. Goodman and his female assistant should have been going home, but I was in a state of obvious panic (as far as I was concerned I was going blind) and they took the time to dilate my pupils, observe my eyes and run me through some tests.
        Mr. Goodman spoke almost no English but, because I knew the context, my Japanese proved adequate for the situation. The most difficult thing that Mr. Goodman had to explain to me was a test that involved staring at a spot set amidst a grid of straight lines. If the lines appear to be bending, this may indicate that the patient has a detached retina, which is a medical emergency.
        One of the tests was reading an eye chart, and, to my surprise, I did fine on this test. I was sitting in a room which was very dimly lit and I was looking at an eye chart which was in an illuminated box, and I had no problems with the eye chart, even though I had been having trouble seeing things clearly in broad daylight.
        For some reason (and I have no idea why) I seemed to see better when sitting in a poorly lit room looking at something that was brightly lit. When watching television, for example, or when at the movies.
        Anyway, the end result was that I did fine on the eye tests, and, when observed, my eyes appeared to be normal. That being the case, Mr. Goodman confidently told me that I had no problem. His diagnosis was "eye strain" caused by too much computer use. He told me that if I used my computer less then my eyes would shortly recover.
        We discussed the question of cataracts. I assume that Mr. Goodman knew the English for "cataract" as I did not then (and do not now) know the Japanese for this term. Mr. Goodman said that I did not have cataracts. I showed him the red eyedrops and the clear eyedrops. He told me that the red eyedrops were a kind of vitamin, that it would be a good idea to use them until they were gone, and that I would not be needing any more of them. As for the clear eyedrops, he laughed when he saw them, and told me I could throw them away.
        When I arrived at Mr. Goodman's premises I was in a state of panic, and was very near the point of complete emotional collapse. By the time I left, I was calm and hopeful. I had also realized that Dr. Quack was an incompetent idiot. I never went back to Dr. Quack and Dr. Quack never made any attempt to get in touch with me.
        That was how my problems started, coming at me from out of nowhere, without motivation, without cause. That is how the train wreck of my life began, the derailing of my stable middle-aged existence, the sabotage of my security and my certainties. That is how, without really understanding what was happening, I began the process of coming face-to-face with my own mortality.


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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.

Disclaimer

        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.

Cancer Patient Copyright © 2005 Hugh Cook.

Hugh Cook

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Ask your public library to buy CANCER PATIENT - a medical memoir of potential interest to cancer patients, their friends and family. This book would be a very good addition to your local library or university library.

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Author: Hugh Cook
Title: Cancer Patient
ISBN: 1-4116-5387-4

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