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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 Twenty-Six

Summary

The author, now awaiting treatment for lymphoma, keeps an appointment the oncology department at Auckland Hospital. There is a waiting list for chemotherapy. Perhaps the author has the chance of being accepted for an experimental chemotherapy trial. The author decides to give an enduring power of attorney to his sister in case upcoming treatment (chemotherapy and radiation therapy) renders him incapable of making decisions for himself.

         Monday 24 January 2005. Oncology appointment.
        Weight: 63.7 kilograms fully dressed. Filled in a "how are you feeling?" form (pain, mood etc.). A relaxed atmosphere in the waiting lounge. A big display of flowers, big blossoms, white, red and purple. One conspicuously bald guy, one woman festively camouflaged by a headscarf.
        Doctor Porter: large B-cell lymphoma. Provisional pathology results.
        There will be a review of my case by doctors at a lymphoma conference next Monday. Would want to give radiotherapy into right eye.
        There is a waiting list for chemotherapy. Before Christmas there were one hundred and sixty-four patients waiting for chemotherapy.
        [A note on the waiting list: chemotherapy waiting lists at Auckland Hospital became an ongoing story in the media through January and February of 2005. My understanding is that the waiting lists developed because a certain number of staff members left, and it was difficult to replace those people.]
        There is a possibility of getting a place on a clinical trial (maybe perhaps) but the trial date is up in the air.
        If trial one drug into arm (by IV, I think) and another administered by lumbar puncture.
        CT scan found a twelve millimeter lymph node in the chest, doctor's view is to treat it as unrelated. (In other words, the big lymph node in the chest is, at a guess, just a big lymph node in the chest.)
        Plan: do chemo first then radiation therapy: if reverse order then severe dementia risk.
        If accepted into the trial, expect neutropenia (low white blood cells) and consequent vulnerability to infection. Can't hide from bacteria so Dr. Porter's philosophy is "damn the torpedoes" -- stay away from sick coughing people but still do normal things like go to the movies. "You've got to have a life." Expect tiredness, hair loss, maybe some vomiting but probably not.
        If not accepted for the clinical trial but receiving standard treatment, then expect similar side effects. Expect to get mouth ulcers and to be very tired.


* * *


        2005 Monday 24 January.
        At this stage I've wrapped my head around the idea that if I get out of this alive I'm going to be damaged, maybe my eyesight, maybe my brain, maybe both. In fact, whether I will be able to measure it or not, there will be a degree of damage to both my eyesight and brain.
        However, all going well, I will still be functional. And, given that the alternative is death, I accept the damage.
        Mood: calm, confident.

* * *


        Monday 24 January 2005.
        Summary of meeting between Hugh, Dr. Porter, Hugh's sister Catherine and Hugh's father.
        1. My chances are, yes, a forty percent chance of being alive in five years. If I am alive in five years then Dr. Porter will regard that as being a cure.
        2. A cancer doctor meeting on Monday 31 January will decide what treatment I get. Dr. Porter will communicate with me after that date. He apologizes for the delay.
        3. My options are (a) standard chemotherapy treatment or (b) if accepted, a place on a special trial.
        4. If (a) then I will join a waiting list. When treatment starts, I will go to hospital for three to four days at a time for chemotherapy.
        5. If (b) then I will go to hospital and get two drugs, one into a vein for the whole body and one into the spine for the brain and spinal cord. I will not stay in hospital overnight.
        6. For both (a) and (b), chemotherapy will be followed by radiotherapy, including radiation for the right eye (and possibly the left).
        7. All going well, the eye damage and brain damage from the radiation will be small, but this is a lottery.
        8. The special trial involves much less radiation than the standard treatment.
        9. If Dr. Porter wants me for the special trial, approval will have to come from the Australian organizer, who may not want me because of the eye involvement (the cancer appears to be in the eye as well as the brain).
        10. The starting date for the special trial is unknown.
        11. If I am accepted for the special trial, I can expect to feel tired and to lose my hair. I should stay away from sick people but can do normal things like go to the movies. It is okay for my mother and father to host group meetings at home but they should ask sick people to stay away.
        12. If I have the standard chemotherapy I can expect to possibly have extra problems, such as mouth ulcers, but that is something Dr. Porter will go over with me if I end up on the standard therapy.
        Note: Doctor Porter is an optimistic man and says he is pushing for a cure. Although he is very clear about the fact that my survival chances are forty percent in five years, he also clearly says that a cure is possible.
        13. Dr. Porter did some simple neurological tests on me (for example, hand strength) and was very pleased with my improvement. He said he was worried about me the first time he saw me. I said that at that time I was worried about me too.
        14. I'm now taking one pill to reduce stomach acid (Losec, aka omeprazole) and I'm taking two four-milligram tablets of dexamethasone, one after breakfast and one after lunch. That, plus eyedrops four times a day, is all my medication now.
        Basically, then, what I do now is wait until I hear more. Dr. Porter approves of my exercise plan, a walk every day, and also approves of my idea of getting up at seven in the morning each day.
        Catherine says she thinks that, as an oncologist, Doctor Porter is probably frustrated that he cannot start treatment right away, because now the diagnosis is clear and certain.
        The appointment ended up taking forty minutes. Both Catherine and my father asked questions. I came away feeling optimistic.

* * *


        2005 January 25 Tuesday.
        Ritual. I am not a great believer in ritual, but symbolic structures do help stabilize the mind, and yesterday I walked down the little beach by the Devonport ferry wharf, and dipped my right hand into the waters of the sea, the sewage-contaminated waters of the Waitemata, and drank.
        Steak.
        Sister Catherine arrives bearing a gift: steak. I volunteer to cook dinner. I am not the recovered man, but I am the coordinated man, my hands no longer a crockery-smashing disaster area.
        One bad moment today and one good. Start with bad. My parents are out, and I've promised to cook dinner, and I'm stalled at the "can't find potatoes" stage. I'm going crazy. I've looked everywhere! Parents return. Potatoes are in the logical place. Walk through the house to the laundry, open the door which leads into the back garden, step through the door into the back garden, turn right, and there are the potatoes, in a paper sack parked under the eaves of the house. Simple, right?
        Dinner is a little late, but it's great steak, sister Catherine's present. Next time will be easier.
        Good moment is in the afternoon, at sister Catherine's place. I've been using her computer to do e-mail, and now we're sitting on the deck yarning, and suddenly she remembers that there's a present for me.
        It turns out to be a 2005 diary hand-decorated by Catherine's artist friend Dwariko, who thought I might like something to write in. I'm touched, and, yes, I love nice paper to write on.
        I tell sister Catherine that the diary will become my poetry diary.

* * *


        2005 January 27 Thursday.
        Thinking about a power of attorney:-
        Dropped by at my GP's surgery here in Devonport. He took a look at the stitches in my scalp and I thanked him for his help, then his nurse took the stitches out. A little blood oozing from one place, apparently, but basically healing nicely.
        Had coffee with sister Catherine at a Devonport cafe (my shout) and I checked my understanding of Monday's cancer doctor meeting with her. We'd both forgotten to bring along our notes from the meeting, but the review went very well.
        Then I used the Internet at Catherine's house, did web-based e-mail and sent the last outstanding report I owe to Dai Nippon Teaching, the company I've been working for in Japan.
        Then Catherine brought up the question of me giving someone an enduring power of attorney before the chemotherapy starts, so if the worst comes to the worst and I become incapable of making decisions that person can do stuff like operate my bank account.
        We have agreed in principle that I will give an enduring power of attorney to Catherine before chemotherapy starts, but that is something we will revisit later.
        I've just phoned the Public Trust on the enduring power of attorney thing. It's simple. I make an appointment, go in, have the document drawn up, and then Catherine signs it at some stage in front of a witness who also signs. For example, I could take it to her to get her signature then mail it back to the Public Trust.
        After that, I think there's a procedure for activating the power of attorney, if required, which needs some kind of additional paperwork -- perhaps a letter from a doctor about my medical incapacity or something like that. I'm a bit fuzzy on the details, but, anyway, the key point is that it's simple enough to do if the need arises.

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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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