Cancer Patient - Chapter 55

What's this?
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 Fifty-Five

Summary

Radiation therapy continues. A certain amount of hair falls out. The author's wife, effectively without a husband for the moment, soldiers on in Japan, where baby Cornucopia is busy developing her willpower, the potential of which seems formidable. For the author, the sheer endlessness of treatment is becoming frustrating. Because of the radiation therapy, food is unattractive. It is a bit of a struggle finding something the stomach is happy to receive.

        Saturday 9 July 2005.
        Yesterday, as I was sitting on the ferry going across to Auckland, my fingers teased through my hair and, with no effort worth mentioning, came away with a tuft of hair. This morning, more hair came out as I combed my hair, even though I combed it carefully.
        I got another letter from my wife yesterday complete with photos of our baby daughter, who is strong, vigorous, full of willpower, and ready to demand what she wants. Which is chiefly my wife's attention.
        It's great to have a photograph of baby Cornucopia standing on the green grass in front of our house in Japan, our green watering can clutched firmly in her hand. She has a chunky solidity and a look of gung ho confidence. She is today's life message, a vision of a possible future.
        But the day-to-day reality of what is, in effect, solo parenthood, is tough for my wife, who has to combine a full time job with motherhood.
        Of baby Cornucopia, my wife writes:-

"Now she has her own will. If she can't do what she wants, she becomes bad temper and cry. She is demanding and wants to get my attention all the time. After we come home I'm very busy to prepare her meal and feed her, eat my meal, wash dishes, give her bath, make a bed and make her sleep. So I can't be with her all the time. If I leave her alone, she ask me hold her. If I don't and leave hear alone, she cry and cry. I feel tired and get mad sometime ... I love Cornucopia, but sometime it's difficult to do things with Cornucopia all the time."

        No way, really, for my to accelerate my own schedule, which requires me to complete my radiation therapy, recover from radiation sickness (I think the term is legitimate in this context, a malaise caused by radiation) and then undergo an eye operation: a vitrectomy on the right eye to clean out the cancer junk, hopefully sharpening up the somewhat misty vision in the right eye.
        (For the cataracts in each eye, no treatment at present. Some years down the track, I'll probably be looking at getting the lens in each eye replaced with an artificial lens, an operation which can be done under local anesthetic. Someone I know who had such an operation in New Zealand paid three thousand dollars for it, and got a satisfactory result.)
        [As it happened, the deterioration of the right eye accelerated, and my eye surgeon suggested that he not only take out the jelly but, additionally, remove the cataract and put in a new lens, this to be done in 2005, a suggestion I very gladly accepted. In the final months of 2005, as I was wrapping up this cancer memoir, I was anticipating undergoing surgery on the right eye before the end of the year.]
        What becomes frustrating is the sheer endlessness of the medical management of my condition, but it's agreed that I'm better off here in New Zealand than in Japan. If I was having my radiation therapy in Japan, it would be a nightmare simply commuting to and from a hospital for daily treatment, and I'd be good for nothing in the evenings because by the end of the day I just want to sleep.
        I'm typically going to bed about 7 p.m. and waking at 6.50 a.m., and I'm spending most of that time asleep, although there do tend to be chunks of wakefulness.
        My main problem at the moment is fatigue, pure and simple. I get tired when walking. I'm tired by the end of the day even if I haven't really done anything. I don't exactly feel energetic in the morning.
        Additionally, I'm finding it hard to eat. I'm managing a small evening meal and I'm also managing a small breakfast, but lunch is a problem. I don't feel like putting anything in my stomach. I'm experimenting with eating different kinds of things and with eating small portions frequently.
        The radiation is doing destructive damage which has to be rebuilt so obviously I need nutrition. I can't just let myself melt away. I do seem to be able to drink a little milk without a problem, and if things get really bad I'll try liquid foods, which I'm told you can buy in stores, although I'm not sure exactly where.
        This is a difficult and frustrating time in part because my sense of drama is low. Currently I don't think I'm going to die. I'm assuming that if I go through with the treatment program then I'm going to be okay. The problem is that the treatment program means living, day after day, as a diminished version of myself, low on energy, running out of life force, finding it difficult to focus on things like newspaper articles -- I can read so much and then it gets too effortful and I give up.
        My wife's letter reminds me that there are strict limits to the amount of giving up that I'm entitled to do, which I suppose is a healthy thing.

* * *

        Sunday 10 July 2005.
        Bart Simpson to the rescue! ... Sounds like an escape from ordinary four-dimensional reality (nurse, doctor, patient, hospital) into the fantastical realms of alternative (or complementary, if you prefer) therapy. But it's not.
        Bart entered my life mundanely at the supermarket, where I spent a goodly length of time trolling for foods I might be able to get down and keep down, and my eye was caught by some Bart Bars, "Chocolate Coated Puffed Rice with Real Honey". (On the packet is Bart himself, saying "Feast your eyes, man."
        Anyway, I bought a packet of six, but, so far, haven't been able to summon up the courage to try one.
        What I have sampled successfully (it went down and stayed down) is pita chips with garlic and sesame seeds (not exactly the cheapest thing to buy) with baba ghanoush, a vegetarian spread that my sister introduced me to, which includes eggplant, yoghurt and tahini, tahini being sesame seed paste. Normally if you say "yoghurt" I'll run in the opposite direction, but baba ghanoush transcends its ingredients.
        I haven't turned vegetarian. Yesterday's calorie intake included some small cold pieces of a very dead chicken which I chewed methodically and swallowed. Not exactly zestful banqueting, but it holds body and soul together.
        Read yesterday an article by Janet McAllister about a woman who survived the horrific medical aftermath of a car crash. The interview, dated July 9, was on pages 18-20 of "Canvas", a supplement of the Weekend Herald, and was occasioned by the publication of the survivor's book, "Losing Face: A Memoir of Lost Identity and Discovery" by Kathy Torpie.
        Apparently KT pretty much had to have her face reconstructed after an accident which led to eighteen operations strung out over a period of years.
        It helps sometimes to take a moment to reflect on just how lucky you are. (By "you", of course, I mean "me", not KT, who evidently went through more than I could imagine surviving.
        I was struck by the following passage:-
        QUOTE:-

        An acquaintance of Torpie's "with New Age leanings" asked her in hospital: "Why do you think you created this in your life?" Torpie's explanation of such insensitivity was that the woman was looking for something "to protect her from the terrible knowledge that this could have just as easily happened to her."

        -:UNQUOTE.
        We are none of us ever more than one skin away from death.
        Today my forehead was an angry red with a scurf of dead skin on it. On top of that, I have a boil coming up on my forehead, so I'm less than cosmetically perfect. When I took a shower, when I gently washed my hair some of it came away on my hand, a filthy gray mess of tangled fibers. I went very carefully with the washing and subsequent combing, wanting to be sure that I still had some hair left for the family party scheduled to be held at my sister's place this evening.
        Finally got up enough courage to eat a Bart Bar. Feels very rich. Took it slowly.
        [Apologies to Bart, but I decided these things were too sweet for me, at least in my radiation sickened condition, and it was some weeks before I finally finished them all. Buying unknown food bars on spec, on the offchance that they might prove edible in my compromised condition, is an indication of how desperate I was getting to find something that I could reliably eat.]

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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.

Hugh Cook

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