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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 Seventeen

Summary

Having being diagnosed with cancer, the author has to think a little about the associated issues of privacy, etiquette and timing. What do you disclose and to whom do you disclose it? The author confronts his survival chances: a forty percent chance of still being alive five years from now. And the author undergoes a vitrectomy of the left eye, an operation to remove the jelly from inside the eye so the jelly can be analyzed for clues to the nature of the cancer.

         So now I have cancer. And the issue arises. What do I say, who do I say it to, and when? It comes naturally to me to adopt a policy of full disclosure, as far as my immediate circle is concerned. By "my immediate circle" I mean the people with whom I have or will have face time on a regular basis.
        My wife knows. My family knows. My former employer, Dai Nippon Teaching, also knows. I've sent an e-mail to explain. They have to know that I'm not going to be back in January to resume teaching my classes. And any future employer is going to have to know, otherwise how do I explain a lengthy gap in my work history? So a policy of full disclosure seems very natural to me.
        But then someone, a fan of my fantasy novels, a stranger, sees my zenvirus.com web site and writes a friendly e-mail to me, a "Hello, I liked your books, how's life?" And I write back and say, all too bluntly, exactly how I am, that I have brain cancer, that I may possibly be dying. And I get back a shocked "I'm so sorry" response, and I realize that I've sinned, and that there are not just issues of privacy here but, also, issues of etiquette and timing. My cancer is not something that I have to dump on the world.
        So later, for example, some time later, when I end up in a bookshop, bandaged, and the bookshop manager kindly asks after my health, I deflect the inquiry, say "It's a long story", and leave it at that. There's a kind of etiquette of disclosure involved here.
        Anyway, what followed after my diagnosis was Christmas.
        Shortly after Christmas, I went to Auckland Hospital with my wife, my father and my sister and kept an appointment at the oncology department. Here, I met two doctors, Dr. Porter and Dr. Hamid.
        In retrospect, it is clear that I was not functioning one hundred percent on the mental level. At the time, however, I had no consciousness of this whatsoever. When I went to the appointment, I had a written list of questions which I intended to ask. I asked all my questions and got an answer for each of them, so I deemed the appointment to have been a total success. Only later did it emerge that I had failed to take in some things.
        If my memory is correct, then both Dr. Porter and Dr. Hamid were present at the appointment right from the start. As far as my memory is concerned, this is a fact. However, as it happens, my memory is not correct. My father and my sister concur in stating that I remember inaccurately. Apparently Dr. Porter was not initially present and arrived some way into the meeting.
        At the meeting, I was given a prescription for an oral steroid, dexamethasone, and was instructed to take eight milligrams of this a day -- one four-milligram tablet after breakfast and one four-milligram tablet after lunch. All going well, the dexamethasone should reduce the swelling in my brain and should reverse the partial paralysis that I was suffering from.
        During the course of the meeting, a bunch of things were explained to me.
        "Lymphoma is a very treatable disease," said Dr. Porter, and he made it clear that he was aiming for a cure.
        I already knew that lymphoma was "treatable". My aunt had been treated for lymphoma and went into remission and lived for years before the lymphoma finally killed her.
        "So what are five year survival rates like?" I asked.
        During 2003, I had been teaching English on a regular basis at a Japanese pharmaceutical company, Enoshima Pharma, and, as part of related curriculum preparation work, I had read a whole bunch of technical documents from the pharmaceutical industry. The term "five year survival rates" had often popped up in such documents, and I used it naturally, unthinkingly.
        "Forty percent," said Dr. Porter.
        Was that forty percent who were alive or forty percent who were dead? I wanted to nail this down absolutely. I sought and got clarification. My chances of being dead inside of five years where about sixty percent. My chances of being alive were about forty percent.
        So what were we actually told at the meeting? Were we told that I was probably going to live? Or were we told that I was probably going to die?
        Later, I found that my interpretation differed from that on which my father and my sister agreed. My interpretation was that the statistics said I was probably going to die. Their interpretation was that I had been told that I would probably live.
        At a later meeting with Dr. Porter, I tried to establish exactly which of these two messages had been sent. The answer was that both had been sent. Dr. Porter had intended to send an optimistic "aiming for a cure" message but, since I had asked a statistical question, he had supplied a statistical answer.
        "And do those statistics represent my chances?"
        "Yes."
        Yes, my chance of still being alive five years out was forty percent. I made sure that I was crystal clear on that. I wanted to know what my chances were. Supposing that I succeeded in making it to the five year point, then Dr. Porter would regard that as a cure.
        Anyway, while there was a little confusion over my chances at the outset, it was clear right at the first meeting that a cure was possible, and one step along the way would be to do a biopsy. This would involve drilling a hole in my brain and extracting part of my brain so it could be analyzed to see exactly which of the thirty-six or so possible treatment options should be offered to me.
        Rightly or wrongly, I gathered that the options were all variations of one basic pattern: first chemotherapy to bring the cancer to heel and then hard radiation to burn out the last bastions of resistance and, all going well, to prevent the cancer from coming back.
        However, before anyone began mining operations inside my skull, the oncologists wanted Dr. Mantell's opinion on the involvement of the eyes. Both eyes were so full of floaters, inflamed cells and other junk that it was difficult to see what was inside the eyes by merely looking. The question was whether the chaos in the eyes was caused by infiltrating lymphoma cells or whether there was some kind of lymphoma "structure" in the eyes.
        The decision that was arrived at was that I undergo a vitrectomy on the left eye to provide a tissue sample which could be analyzed at a lab. There were risks associated with the operation, and the risks were explained to me, but, for my part, the decision to go ahead with the operation was very easy.
        Back in Japan, when Dr. Lux had proposed that I undergo a vitrectomy of the right eye, I had been strongly resistant to the suggestion. My left eye had by then been effectively blind, so if some mishap were to result in the blindness of the right eye then I would be completely blind.
        In New Zealand, however, the situation was different. The proposal was to biopsy the left eye rather than the right, and the left eye was already more or less useless. Furthermore, I had been given to understand that the left eye was probably permanently damaged, and that I could not expect it to improve. Consequently, it did not seem to me that I was putting much at risk.
        On Thursday January 6th I showed up at the eye clinic at Auckland hospital and was examined by a Dr. Hirut Von Lany, who described herself as Dr. Mantell's "fellow", which I think means a kind of extremely high-level student. (Very high level, I think. Ascending the elite heights.) The eye operation was scheduled for the next day.
        My diary entry for the evening of January 6th follows.


* * *


        2005 January 6 Thursday.
        I don't have a script for dying of cancer. Scripts for being abducted by aliens? I have plenty of them. Abduction scripts, hijacking scripts, thermonuclear war scrips ... I have all of those. But nothing for cancer.
        But it seems that I don't need a script. Other people have been here before. You don't need to know your part. Your role will be elucidated. You just have to show up. And everything will become clear. Clear enough. What you should say. What you should do. And what I should do now is just go with the flow. Submit to the program.
        And so, tomorrow, Friday 7th, I will show up at the eye clinic at 11 a.m., and about 2 p.m. a biopsy on the left eye will start, under local anesthetic. Remove the jelly to send to the lab for analysis, put in fluid to replace the jelly, sew it all up, and, hey presto! The left eye will be as good as before. (That is, pretty much useless.)
        All going well, tomorrow I should be free to go home at about, say, 3:45 p.m. or 4:15 p.m. or thereabouts.
        In advance of the eye operation and all that lies ahead, I feel calm. I've had well over a year of Bad Signs and Warnings to get ready for this, and at the moment I'd describe myself as calm, as being in a state of total rest. Like a hand grenade just before the handle flies off.

* * *


        Unfortunately, I don't have any video of the eye operation that took place on Friday January 7th. I don't even have a photo. I don't even have much in the way of memories. I didn't get to observe the operation because I had a surgical drape over the right eye and, if memory serves, a bright light shining into the left eye. My wife came with me to the hospital but wasn't allowed to observe the operation. Instead, she waited outside. So I was unaccompanied while in the operating room, and don't have another mind's memories to rely on. Furthermore, because my wife wasn't allowed into the operating theater I wasn't able to ask her to take photos of the operation. (But even if she'd been in a position to take photos my guess is that she would have refused.)
        I was fairly relaxed about the operation because I'd had two minor surgical procedures carried out on my eyes in Japan: steroid injections. The one sobering moment of the day, the one small nudge from the zone of "you may die" was right at the start of the operation, when an anesthetist showed up and put a little "just in case" lifeline in my left arm. And I thought, "Yes, this is a real operation ..."
        During the operation, I lay on the operating table fully conscious, as the operation was taking place under local anesthetic, but unable to see anything (or, at least, unable to see anything that made sense). I could, however, hear the conversation (all about the operation) of the people who were working on me, these being Dr. Mantell, Dr. Von Lany and one other person, a woman.
        The one clear memory I have is of how Dr. Mantell looked immediately after the operation. He was beatific. There's no other word for it. He was beatific, gliding on relaxed waves of comfortable achievement, happy for himself, for the team, for us ... and I was happy, too.
        I wouldn't want to oversell the "maybe you're dying of cancer" experience, but it did have a couple of supremely happy moments, and this was one of them: seeing the eye surgeon in his happiness, and sharing it.
        I assume I went home from the operation with a patch over my eye, but I quite frankly have no memory of this. My memories of the two eye procedures I had in Japan earlier, the two occasions on which I had steroid injections, are much clearer.
        My records show that I spent NZ $50.40 at the pharmacy and came home with a bunch of new bottles of eyedrops. I wrote "I'm mutating into a small mobile pharmacy". I got three sets of eyedrops. One was Pred Forte, an ophthalmic steroid. One was an antibiotic, chloramphenicol. The third was something called cyclpentolate, which I think was designed to keep the eye comfortable in the aftermath of the operation by relaxing it.
        In due course I received a "Clinical Summary" from Auckland Hospital, a letter for whom the intended reader was not really me but, rather, any medical professionals who might need insight into my case. As far as I was concerned, part of this was pure gobbledygook, starting with the diagnosis:-
        "Oth disrd vitreous body globe dis cl/e".
        Although I'm an English teacher, I don't get that at all.
        Still, there it was, documentary proof of my eye operation, the removal of the jelly from the left eye, the document saying "Surgeon was Nick Mantell" and, for clinician, "Hirut Von Lany", "For Consultant Dr. Sue Ormonde". (I must have missed something, because I can't figure out how the consultant fits into the picture, but maybe she was one of the people in the operating theater.)
        Back in Japan, when I was resisting the idea of having a vitrectomy, one of my concerns was that the operation would in some weird way alienate me from my body. Instead of normative jelly, my eye would contain fluid, initially some artificial fluid provided by the surgeon, and later, after a week or so, a replacement fluid of some description provided naturally by the body itself.
        I thought of this imagined non-jelly eye as an eye made of water, and it was my conjecture that I would never feel the same about the eye. I would have become less human than I was, less complete, my sacred perfection forever violated.
        In fact, however, after the operation my feeling regarding my restructured eye were ... well, that the eye was normative. An eye is an eye. After the operation, I never felt, not even for a moment, that the eye was in any sense alien.
        As for my overall body image, in July of 2005, in the aftermath of chemotherapy and radiotherapy, I assessed my sense of my physical self as being, if anything, more confident than before I fell ill, despite the uncertainties regarding my long-term outcomes. I guess because my physical capacities were tested by my treatment, and, put to the test, did not at any point fail.
        What follows, below, is a section from my notes for January 2005.

* * *


        ... and meantime, while I have been busy with medical stuff, my sister-in-law, a business executive, who is one of the people who make things happen in an extremely large business corporation which has its products, if not in your house, then certainly in your local supermarket, has been exerting her talents on my behalf, with great results.
        Assisted by a handwritten letter which Dr. Porter graciously provided, my sister-in-law has had dealings with the airline company, and has succeeded in arranging for the resurrection of a couple of technically dead airline tickets. Technically, the airline tickets for transport back to Japan for me, my wife and our baby all expired on December 28th, but it seems that my wife and our baby will be able to fly back to Japan on January 17th to attend to some really vital matters, the most important of all being daycare for our baby in 2005.

* * *


        The daycare issue was really important. My wife, who has a secure civil service job in Japan, had been given a year's maternity leave on part pay. In fact, actually, she got some maternity leave before the child was born. And then she was able to take a year's leave starting with the day of the baby's birth.
        However, early in April, my wife was going to have to return to work, and for her to do that it would be necessary for us to get daycare.
        The optimum solutions would be for us to obtain one of the seven places that were available for babies aged a year or less at the Yokohama Beloved Children Garden daycare center. This place, which was run by a branch of one of Japan's Protestant churches, was only ten minutes on foot from our house. Additionally, it was affordable.
        I never went through the financial details with my wife, but I gather that the Yokohama Beloved Children Garden is subsidized by the local government, therefore it was affordable. If we could not get this subsidized daycare, then we would be in deep financial trouble. Additionally, the nearest possible private daycare center was considerably further from our house.
        To get one of the daycare places, my wife had to go through a two step process. First, she had to make our case to the local ward office, that is, to our local government. And then she would have to convince the people running the Yokohama Beloved Children Garden that baby Cornucopia should have one of the seven (count them, seven) places available for children in her age group.
        This problem was ticking away in the background through the early weeks of January.

* * *


        As I've mentioned, immediately after the operation on my left eye, Dr. Mantell looked very happy. Plainly, this was a man who enjoyed his work. Unsurprisingly. I think in the West it is natural to think of a doctor as being someone who enjoys doctoring.
        Having come through the eye operation okay, I was gaining confidence. I was in New Zealand, the Land of Practicalities, where problems exist to be solved. My feeling was that I had escaped from Japan, the Home of Theory, the Land of Eternal Tests. In New Zealand, my problems were going to be sorted out.
        According to my notes, I returned to Auckland Hospital on Saturday January 8th, the day after the eye operation. I had an appointment at 09:00. Why? I'm not exactly sure. Maybe to see if I was still alive. (I'm happy to say that I was.) Maybe to talk through a few post-operative issues.
        "You did very well," said Dr. Von Lany, who checked the eye. "You younger people don't usually like local, but you were very brave."
        That was one of the nicest things anyone had said to me during a week of people saying nice things. The "you younger people" really took me by surprise. I had been feeling old, really old, too old, for quite some time. In hospital terms, however, I was a younger patient rather than an older patient, and I was destined to keep hearing the "younger" term applied to me as my patient experience progressed.
        Yes, and I remember we touched on the issue of whether it was okay for me to pick up my baby daughter.
        "We do not forbid you to pick up an eight kilogram baby," said Dr. Von Lany.
        That made me very happy. It was a ... how can I put it? A convivial moment. A friendly moment in which the world of surgery intersected with my private life, with my private concerns.
        While I was not forbidden to pick up my baby daughter, I think I did get a sheet listing a number of prohibitions, including, if memory serves, playing sport for a certain period of time. (Having written that, I'm not actually sure whether I got the list of prohibitions before the operation, on the day that I underwent surgery or on the following day.)
        Dr. Von Lany looked on her computer for the results of the analysis of the sample extracted from my left eye, but there was no result, not as yet, and my immediate thought was that the sample had been lost. In fact, the sample had not been lost, and an analytical result of sorts was eventually produced, but I am fuzzy as to what, if anything, this tissue analysis contributed to the understanding of my cancer.
        Anyway, the key point is that the operation itself was a success, and the success of the operation boosted my confidence that I was in the best of all possible hands.
        To close out this chapter, here is a brief glimpse of my home life with baby Cornucopia. It's the Saturday evening, the evening of the day after my eye operation and I'm in my parents' home, along with wife and baby. I'm reading a book when I happen to look up and see what baby Cornucopia has in her hand.
        I ask my wife, "Cornucopia-chan no omocha wa nan desu ka?" meaning "What is cute little Cornucopia's toy?"
        There is no response from Murasaki-san. So I repeat the question, this time with a little more emphasis, trying to get the intended meaning, which is something like "Exactly what the hell has that child got her hands on now?"
        My wife looks and sees that Cornucopia has, in her left hand, a pair of extremely workmanlike sewing scissors, which she is holding in disembowelling mode.
        "Cornucopia! Seppuku baby!"
        A moment later, Cornucopia has been disarmed. I only hope she doesn't hijack the airplane on the way home.

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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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