Cover image for Living proof : a medical mutiny
Title:
Living proof : a medical mutiny
Author:
Gearin-Tosh, Michael.
Personal Author:
Edition:
First Scribner U.S. edition.
Publication Information:
New York : Scribner, [2002]

©2002
Physical Description:
334 pages ; 22 cm
Language:
English
Personal Subject:
ISBN:
9780743225175
Format :
Book

Available:*

Library
Call Number
Material Type
Home Location
Status
Central Library RC280.B6 G435 2002 Adult Non-Fiction Central Closed Stacks
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Summary

Summary

Written six years after the author was given only months to live, "Living Proof" is a beautifully told, compelling examination of how one cancer patient battles the conventional health system and chooses the "crazy way through"--alternative medicine.


Author Notes

Michael Gearin-Tosh is a fellow of St. Catherine's College, Oxford University, where he teaches English literature, and a visiting professor in the overseas department of Stanford University


Reviews 3

Booklist Review

Gearin-Tosh's story of cancer and his choice of treatment for it (which is where the mutiny comes in) engages us with his and his friends' and colleagues' attitudes about his illness as well as those of various American and English general and specialist practitioners. He was diagnosed with multiple myeloma--bone-marrow cancer--in June 1994, and to treat this disease that is incurable but manageable by many treatment regimes, he eschewed regular Western medicine's usual use of powerful drugs, such as thalidomide and pamidronate, for a course of treatment including frequent coffee enemas and plenty of freshly prepared vegetable juices; acupuncture helped, too. His cancer seemed in remission when he wrote this book. An English teacher who works in university theater, he enlivens what might have been a self-pitying ramble with abundant references to and quotations from Shakespeare and Chekhov, in particular, which point up his sense of humor and feeling for irony. Gearin-Tosh provides pertinent information about unusual treatment of a devastating malady in a context that resembles a good novel. --William Beatty


Publisher's Weekly Review

Gearin-Tosh, a tutor at St. Catherine's College, Oxford, was diagnosed with myeloma (cancer of the bone marrow) and told that if he did not begin chemotherapy immediately, he would be dead in less than a year. The recommended treatment, while probably extending his life somewhat, would not cure the condition. A second specialist confirmed the original prognosis, but the author rejected the proposed treatment after a former Oxford pupil consulted a cancer statistician who warned, "If your friend touches chemotherapy, he's a goner." Interwoven with engaging anecdotes from his professional life, Gearin-Tosh details his research into the world of alternative medicine, a journey that led him to Chinese breathing exercises and acupuncture. The treatment that he credits with saving his life he found in A Cancer Therapy, by Max Gerson, a doctor who died in 1958. Based on the daily drinking of freshly made juices and taking several coffee enemas a day, the Gerson Diet also includes a variety of supplements. Despite the time-consuming nature of this restrictive regime, eight years later Gearin-Tosh is alive and pursuing an active professional life. He is careful to point out that while this program is working for him, "each person should explore his own way with their physician." Gearin-Tosh's detailed, engaging memoir of a search for his own cure will inspire readers to take the time to consider their own treatments. (Apr.) (c) Copyright PWxyz, LLC. All rights reserved


Library Journal Review

This is a captivating, detailed, and enlightening account of surviving multiple myeloma, a rare and usually incurable cancer. Yet it is much more than the story of a man who questioned the prevailing therapies of conventional medicine. It is the tale of a contemplative person who gave himself the gift of time to reflect over his diagnosis, gather and interpret information, and enlist the support and resources of friends. Rather than rush into debilitating treatment with its incapacitating side effects and questionable benefits, Gearin-Tosh weighed his options and ultimately chose an unconventional, alternative route. Living Proof is also about Gearin-Tosh's relationships with his physicians and researchers and with the friends and colleagues who provided him with support and counsel during his illness. A fellow in English at St. Catherine's College, Oxford, he weaves literary selections from Chekhov to Yeats into his highly personal account, as well as excerpts of correspondence between his physicians and colleagues and relevant citations from the medical literature. It all comes together in an intelligent, beautifully written narrative sprinkled liberally with humor and aplomb. Recommended for consumer cancer collections and large general consumer health collections. Valeria Long, Grand Valley State Univ. Lib., Grand Rapids, MI (c) Copyright 2010. Library Journals LLC, a wholly owned subsidiary of Media Source, Inc. No redistribution permitted.


Excerpts

Excerpts

Chapter 1 MARCH I have no sense of being ill as I leave Oxford, where I teach in the University, for a trip to Moscow. The flight is via Paris, where a Russian lady boards. She refuses to take her seat. "But it is by the window, Madame." "You must change," she tells the stewardess, "it will frighten my dog." A puppy is in her coat and looks relieved to stay there. But a dog on a plane...what a difference from UK quarantine. And in Moscow everyone is out with a pet before going to work. From the window of the tower block where I stay I can see spaniels, terriers, Samoyeds and a dog like a wolf. The owners smoke and take care on the ice: the only light is from street lamps, which are not bright. Dawn will not come to Moscow for a couple of hours. My visit is at the invitation of the Russian Academy of Theatre Arts. Founded by the Czar's family in 1878, the Academy continued through the Revolution and still occupies the same building not far from the Kremlin. Where the Royal Academy of Dramatic Art in London has ninety students on a three-year course, the Russian Academy has five hundred students for five years. Even in my class you sense a different scale: I meet Cossacks, a Tartar, a girl from St. Petersburg who could be a ballerina, Muscovites, students who look Scandinavian and others who come from the regions near China. All twelve time zones of Russia have been crossed to bring us together. My task is to direct scenes from Shakespeare. As we start a Professor of the Russian Academy walks in. He comes with an entourage of two well-built ladies and a lithe assistant who smokes Turkish. I am told to stand up. "What is your positioning with regard to truth?" the Professor asks me. I answer as best I can, but not well enough. Am I not concerned, the Professor enquires, with Shakespeare's tendency to fantasy? And what of privilege in the plays? One of the Professor's ladies writes down what is said, the second keeps an eye on me and the smoker smiles at the Professor. He now asks me to explain the teaching of drama in the United Kingdom. I reply that there is no single method, and that each of the British schools has their own emphasis. At the Oxford School of Drama -- not a part of the University of Oxford -- the philosophy is to spend the first months concentrating on verse not prose. "Russian students do not open their mouths until they study the throat and larynx," the Professor says. Not a hint of protest on the faces of the students. APRIL "You look pale," says Rachel as she meets me at Heathrow. "No sun in Moscow." "Even now?" "It was bright on a couple of afternoons, for an hour or so. Still cold, but people tried to sunbathe: men took off their shirts and lined up in the streets." In contrast, there is high spring in the south of England. We sit in our garden at Oxford and listen to a blackbird: in Moscow, there were only crows. Rachel Trickett and I have lived together for twenty-five years. We are not married, and we are not lovers. If this makes us an odd couple, neither of us gives it a thought. We adore each other's company, and Rachel, daughter of a postman from Wigan, is fierce about her independence and the value of privacy. We are both scholars of English Literature. Rachel has retired from her official position as Principal of St. Hugh's College, one of the colleges in the University. But she continues to teach both undergraduate and postgraduate students. She gives lectures to universities in the UK and the States and, at present, she is preparing a number of broadcasts for the BBC. MAY Oxford term starts and our weeks are full of lessons, lectures and the business of University life. At the end of the month I catch a chill. Nothing to it, we think: I was gardening for too long in the rain. But after a day in bed I wake up wet as if I were swimming. I take off the sheets and wrap myself in towels. Two hours later, wet again. Rachel hates doctors -- her own tells her to stop smoking and to drink less whisky -- but she insists that I take advice. I phone a doctor, who recommends paracetamol. Two more sweating nights. "Keep up the paracetamol," the doctor repeats on the phone "and drink plenty fluids." After further nights I argue when I ring. "Is not this sweating very unusual?" "Possibly, but you are fifty-four." "It does not feel like flu." "You could ring your insurance company for a check-up. In the past people waited until something surfaced. But if it is the case that you want to find out what it is that might surface at some future point..." "It has been going on five nights." "Drink plenty fluids. Nice to hear from you." He rings off, which I think offensive. I phone the insurance company. A breezy lady can fit me in next week. "If it is urgent, see a GP." JUNE I was brought up in Scotland. We lived ten miles from a village, but a doctor would have visited by this time. Is the South of England too overpopulated? Is there a different tradition in the North? A Scots vet, I am certain, would not ignore an animal this long. It drifts into my mind that Shostakovich, the composer, wrote about bad manners. Rachel finds his Memoirs: Now I can't abide rudeness...Rudeness and cruelty are the qualities I hate most. Rudeness and cruelty are always connected I feel. (Testimony, p. 16) The wonder here, it seems to me, is the context. Could anyone who lived under Stalin -- "Looking back, I see nothing but ruins, only mountains of corpses" (Testimony, p. 1) -- care about good manners? They must have been an unheard-of luxury. Or were they the real test in that hell? Shostakovich went on: As you know, Lenin in his "political will" said that Stalin had only one fault: "rudeness." And that everything else was in good shape...And we know how it all ended. No, don't expect anything good from a rude man. And it doesn't matter in what field the boor is. (Testimony, p. 16) Don't expect anything good from a rude man: it kills the paracetamol doctor for me. How do I find another doctor? The only doctor Rachel likes is a retired consultant who once treated her for gout. "We know no more about gout than Galen did," he told her -- and Galen lived in the ancient Roman Empire. Rachel always warms to experts who confess ignorance. If she gets a chance she cross-examines them until they do. Even if she gets half a chance. As it happens I met a doctor before I went to Russia, and I liked her. A privilege of my life is that Cameron Mackintosh, the theatre producer, chose me to look after his visiting Professors of Theatre at Oxford. This year it is Peter Shaffer, author of Equus and Amadeus. He brought his doctor to a lecture and chatted about her: "She has a debby love of fun but can also fix you with 'See that specialist, I've arranged it in one hour's time' -- and you know it is life or death." But there was no trace of grimness when I met Dr. Christian Carritt. In her sixties, beautiful and unelaborately stylish, she had a buoyancy that came from the heart, although you noticed that she did not waste a word. Still, Dr. Carritt lives in London, which is fifty miles from Oxford. I can scarcely get out of bed. More nights swimming. "Dr. Carritt may know of a doctor in Oxford," says Rachel. "We have to do something. You are much too patient." I phone Dr. Carritt. "Two weeks sweating? Sounds ghastly. Can someone drive you up to London? Tomorrow. Come to tea. I would like to see you again." We have tea not in Dr. Carritt's surgery but her sitting room. Prolonged night sweating (I later found out) is a classic symptom of cancer and leukaemias. "I'd better take some blood." She does it almost skittishly as we chat about her garden, the theatre, Oxford and Peter Shaffer. "I'll have this analysed and ring you." Dr. Carritt phones next day. "Michael, you are wonderful." "Wonderful?" "I cannot understand how you have led a normal life being so anaemic." "I have been in bed for two weeks." "No, long before that. Did you have giddy spells?" In fact, yes. But I put them out of mind: friends, pupils and strangers have been clutched as I steadied myself or fell over. But the giddiness was only for a minute or so. I put it down to not eating. Or tiredness. Or humid weather. "I have arranged a specialist for you at 9 A.M. tomorrow." This is said as lightly as offering a sandwich. "But if it is only anaemia..." "No, you must go." Not a tone to argue with. "What shall I tell my doctor?" I ask. "The last thing people should have to worry about are their doctors. I rang and told him that we met in London, you were not well, and I thought I had better look into it. Now let me know about the specialist. I had to shop around to get one less than a couple of hours from Oxford. Please ring and tell me if they are any good." This is skill. If you are told to see a specialist next morning, let alone having a specialist searched for, things are bad. But the idea that you, the patient, can help decide the merits of the specialist...it distracts from fear and makes the consultation bearable. "Darling, forgive me if I do not come," says Rachel. "I will only make things worse by being anxious." The specialist is a senior lady and almost cheerful. A sample is to come from my bone marrow. "At the end it will hurt like a sting." It does. I am sent for X-rays. "They will cost more than I do, I'm afraid. Shall we meet in a week?" "Not before?" "I suppose the results can be back tomorrow afternoon." She smiles indulgently. "The day after at 11 A.M.?" I go back to the hospital. The consultant settles behind her desk. "You have come alone?" "Yes." "Do you live alone?" "No. Why?" "So there is someone to make a good cup of tea?" I do not drink tea. "But are you happy at home?" "Yes." She looks doubtful, so I explain that during University term I have lived for twenty years with Rachel. "Are you very wealthy?" "No. Poor." "But you come to me privately." "I did not want to wait. And I am insured." "So you are not wealthy?" "No." "I just thought you might be thinking of early retirement." "No. I love my job." I ask her to bring matters to a head. "What you have will shorten your life. I cannot say how much. It starts with just one rogue cell. If I knew why, I would get a Nobel Prize. But there is no cure." "So what is wrong?" "You have a type of cancer called myeloma. It is a cancer of the bone marrow. Have you heard of it?" "No." "Here is a booklet. Are you going to get home all right?" "I have a taxi." "Good. I will write to the University. Will you give my secretary the details? That is, if you agree." "Yes." "Good. And I would like you in here next week. To start treatment." "Treatment?" "Yes. With luck we should have you back at work in October." "But this is June...and you said there was no cure." "No cure. But we have treatment." "From next week until October?" "Yes, and I can tell you the nurses are wonderful." Crunch time. Decisions. Except the specialist thinks there is nothing to decide. But I am not for humid summers in the South of England, I need hills and fresh air. Treatment but no cure? Why treat if you cannot cure? Why such a long treatment? And the nurses...nurses are wonderful, but they carry out what specialists say. My life is to depend on the intelligence of this lady. She is not explaining what she plans. Even in outline. Am I to sign myself away on nothing? Is that what she expects? I hear myself saying, "I spend the summers in Scotland." A couple of minutes pass. I get up and thank her for her trouble. She takes a pad, writes and passes me the page. "What is this?" "The names of two doctors in Edinburgh." "Why?" "They will know what to do if you become immobilised." Ace of trumps. Played deadpan. "You think that is likely?" "Immobilisation is what happens with your cancer." I still find myself leaving. "You can always try a second opinion" is the farewell. I go back to college, not to Rachel's flat. There are roses in the garden. Irises. And moorhens on the river. With a family of blackdown blobs. Fresh air, not the limbo of hospital. I meet a colleague who asks if it would be easier if he went to Rachel first. I accept his offer, and sit in the sun. Was I insufferable to the consultant? She was only doing her job. I know nothing about cancer: do I think I am exempt from getting it? What about the library? Each Oxford college includes most disciplines, and we take medical students. I find a book, Rees, Goodman and Bullimore, Cancer in Practice (1993). Myeloma is in the index, and p. 193 reads: Multiple myeloma is incurable. The median survival time from clinical confirmation to death is under a year in untreated patients, and two to three years with treatment. Some 15% die within the first three months. Underneath there are: SYMPTOMS AND SIGNS Bone pain, pathological fracture, anaemia, symptoms of hypercalcaemia and renal failure, fever due to infection. So here is my anaemia and fever. Also bone pain: I slipped a disc in 1989, which went on for months, and I am still sore if I sit for any great length of time. Life as a scholar gives you reflexes. Where does the word myeloma come from? Classical Greek? A dictionary gives me Greek muelos, bone marrow. Hence myeloma, cancer of the bone marrow. Is it a modern disease? The 1991 Encyclopaedia Britannica has a villain myelitis, also of the bone marrow: "the most that can be hoped for is the relief of symptoms by careful nursing and attention to the condition of the body and its functions." Myelitis is not myeloma, but the vista of humiliation is enough. My colleague comes back from Rachel: she asks to be alone for a couple of hours. Rachel never talks about her fears, and I sometimes think that perhaps she no longer can. If this seems odd in someone so articulate, its source is a great sorrow: Rachel's sister, her only sibling, developed schizophrenia and was institutionalised. However exhausted by work, Rachel would drive hundreds of miles to visit every week. "I have such delight in life and my sister none," Rachel once grieved to me, "and she knows she has none." I am twenty years younger than Rachel and, although she would not say it, she relies on me to see her out. Now I have cancer. One of Rachel's best friends was Rosemary Woolf, a scholar of medieval literature who also loved fun and fast cars. They would go on holiday together, driving for weeks in France and Italy. Rosemary developed cancer and Rachel lived with the agonies of Rosemary's treatments, her subsequent falls, illnesses and death. I forget about ringing Christian Carritt but she phones me while I am still in college. "Cancer," I say, "bone marrow, though the specialist did not tell me much." "Do they ever? When I was a student, we were actually trained to tell the patient as little as possible." "Really?" "Yes." I tell her about the book in the library. "And?" "Untreated myeloma patients die in less than a year, treated in two to three years." "Michael, it is very important that you do not take too much notice of statistics. Think how they are calculated. You count up, but every patient is different. One is diagnosed at sixty-eight, another at forty-eight. One might be in the early stages of cancer, another might be diabetic as well. Or depressive. One patient might live in the country, another beside a chlorine plant. Statistics tell you very little about an individual case." "Is myeloma a rare cancer?" "No. One of the twenty most common. How was the specialist?" I go through the consultation. From start to finish: all the way to immobilisation is what happens with your cancer. Silence from Christian. A long silence. "My God, what a bully!" she then says. "Were you shown the X-rays?" "No." "But why not? Either they do or do not indicate bone about to collapse. If your bones are about to collapse, it will stop you going to Scotland. But my money is on the X-rays showing no such thing." "Then it is outrageous." "Yes." Immobilisation was the trump card of the specialist. Christian now plays a trump of her own. She will arrange a second opinion, of course, but should I not get off to Scotland for a couple of weeks? And she leaves it there. No further comment. "Goodbye." Bless Christian: she gives Rachel and me something we can bear to talk about. Scotland is dear to Rachel. She thinks it an excellent idea for me to go and she would like to come too, but she grumbles about the lack of comfort in my cottage. "Michael darling, you are a perfect guest but a tyrannical host." (In Scotland I try to get her to smoke outside, or in the spare room.) "And you know, Michael, I am frightened for the dog." When our dog was a nervous puppy from the strays' home we had taken her to Scotland. She astonished Rachel by leaping from the car and killing a rabbit. "Suppose," Rachel asks, "she ran away again, chased sheep and a farmer shot her?" This is an unlikely scenario, but it gets us chatting. We talk about deer, foxes, weasels and snares. Somehow we drift on to bears. I tell Rachel about a circus I went to in Moscow where you could be photographed with a bear who put its paws on your shoulder. "Muzzled?" asks Rachel. "Of course." "Did the bear look healthy?" "Mangy." "I hope, Michael, you took no part in this outrage to the bear. Did you have your photograph taken?" "No." The rule book would be thrown at me if I had. Rachel will not come to Scotland: she wants to stay in Oxford and have time to be alone. Travel is not easy if you are anaemic. You have to think how to do it. Less time, therefore, to think about a death sentence. Looking back, I see that Dr. Carritt's aim was distraction. As simple as that. But distraction is a medicine in itself, as I came to realise. It was common sense, if you like, but never so valuable as when you are not capable of applying it to yourself. Christian's point was get away. A new place will give you new thoughts. And travelling has a rhythm of its own. She had found my specialist in twenty-four hours. She could find another as quickly. But she did not want to. Instead I was to go to Scotland, because it was what I usually did. This quietly assumed that life might go on as before. The news of a lethal cancer takes you over. But if you can be put back on old tracks somehow, if you can live again according to your own rhythms at least a little, there is a chance for resistances and energies that you have built up over the years. A chance. Not that Christian put any of this into words. She was far too skilful: consciousness would add anxiety, which could undermine what might be achieved by instinct. Copyright © 2002 by Michael Gearin-Tosh Excerpted from Living Proof: A Medical Mutiny by Michael Gearin-Tosh All rights reserved by the original copyright owners. Excerpts are provided for display purposes only and may not be reproduced, reprinted or distributed without the written permission of the publisher.

Table of Contents

Living Proofp. 7
from Sir David Weatherallp. 183
from Professor Robert A. Kylep. 185
Why Living Proof?p. 187
from Professor Robert A. Kyle (ii)p. 261
from Michael Gearin-Toshp. 265
Carmen Wheatley: The Case of the .005% Survivorp. 267
Bibliography to Living Proof and Why Living Proof?p. 329
Acknowledgmentsp. 333

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