[back] Bone cancer

SUNDAY Times JANUARY 27 2002

Michael Gearin-Tosh: The medical mutineer
Michael Gearin-Tosh, the stricken Oxford don who defied the cancer specialists, chronicles the struggle for survival he won with the help of carrots, a bucket and loving friends
The diagnosis is cancer. The hospital tells me to start chemotherapy at once. Without it I will die in months; with it I may live for two to three years. I ask for a second opinion. The advice is the same: start at once. Then a world authority on cancer says that if I touch chemotherapy I am “a goner”. What am I to do? Helped by friends — particularly Rachel Trickett (the retired principal of St Hugh’s college, with whom I have shared a home for 25 years), Christian Carritt (a doctor) and Carmen Wheatley (a former pupil) — I try to find the answer.

August 1994, week 4: Two months since myeloma — bone cancer — was diagnosed. I phone Dr Ray Powles, head of the leukaemia and myeloma units at the Royal Marsden hospital, Sutton. We chat about theatre, politics and Italy. But not medicine. We even get on to my view of hope.

“How did you define optimism?” he asks.

“Not my definition, and I am not sure whose it is: an optimist is someone who knows how bad the world is, a pessimist is still finding out.”

“We will get on,” he laughs.

I tell Rachel that Carmen is to come to a consultation with Dr Powles.

“Is she always in for the kill?” asks Rachel.

Carmen and Powles toss about statistics — he is quicksilver with them — predictions, hypothesis, assumptions and interferons. He sees that Carmen is my prop: he is helping me by provoking her to say all she wants, and a bit more. He is more tough than the other consultants. Am I aware there is a death risk in the treatment? “Always is.” But he gives me a 60% chance of complete remission.

“Remission for how long?” asks Carmen.

“What I do is always evolving. I cannot tell.”

“Suppose I just die of the disease?” I ask.

“The zero option is always a possibility.”

I do my Chinese breathing exercise each day, but familiarity does not make it less daunting. Or time-consuming. You cannot do the exercise, I find, unless you are in the right frame of mind. Am I too highly strung? It can take an hour before I start.

Breathe in through the toes of the left foot, and up to the hip. Breathe in through the toes of the right foot. Breathe in through the hands. Breathe in through the base of the spine. This is more odd than breathing through the toes.

August 28-September 3: A letter from Carmen. “I am a fan of the enclosed book, Leslie Kenton, Raw Energy Recipes, which has a lot to say on cancer diets. I am tracking down Max Gerson, A Cancer Therapy, which seems to be the seminal work.”

September, week 1: My wonderful friend Olga Polizzi urges me to see a Vietnamese doctor, Dr H. He was head of an army surgical unit during the war against the North. After the communist victory, he was put in a concentration camp. He was released. “They found they needed doctors, and those from the South were better qualified.”

Dr H decided to flee Vietnam. He came to the UK and qualified again as an orthodox doctor.

“How does acupuncture work?” I ask him.

“We do not understand much. I cannot cure your cancer; I try to help your body fight it.”

Dr H puts needles above my ankles, in my legs, my stomach and my hands. I then rest for an hour. When I get home, I sleep very deeply.

Carmen finds a Professor Sherman in New York and phones him. In the course of a long chat, Carmen makes a discovery: he has a myeloma patient whom he has not treated with chemotherapy and whose disease has remained static for 10 years. Only one patient, but for us it is a breakthrough.

Up to now our thinking has been in the shadow of the book I read on the day I was diagnosed: “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.”

September, week 2: I tell Dr H how excited I am about Professor Sherman’s survivor. Dr H’s face does a double take: mouth joyous like a child, eyes satiric.

“Am I wrong to be pleased?” I ask.

“Maybe your number not up.”

Dr H puts in needles.

“Typhoon when I escape Vietnam. My number not up.”

Dr H tells me that he was in a crowded boat. A typhoon tore off the rudder and they drifted for three days until a ship from Glasgow came by.

“We always send cards to the captain.”

Carmen has found a doctor in London who put himself on the Gerson therapy, and he is happy to see me.

“But Carmen, I must know something about the Gerson therapy.”

Carmen giggles.

“What is the joke?” I ask.

“Coffee enemas.”

“I have never had an enema.”

“Lucky you, Michael. The Gerson therapy enema is two pints.”

“Of coffee?”

“Yes.”

“You mean two milk bottles . . . of coffee?”

“And every day. Four times.”

 “Two pints four times?”

“Correct.”

“That is a gallon.”

“And I have found out something else. Do you know who was Rachel’s co-examiner when I applied for Oxford? Before you took me?”

“No idea.”

“There was an examiner in modern languages at Rachel’s college, Joan Spencer.”

“I know Joan. She is delightful.”

“She has had cancer. And cured it with Gerson. Go on, phone her about enemas.” I phone.

“Joan, I never knew you had cancer.”

“Yes, years ago.”

In 1983 a black mole was found on Joan’s arm. Was it melanoma, the dreaded skin cancer? “Yes,” said a specialist after surgery. “No,” said a second. A third thought there had been malignancy but it had gone.

In 1987 a lump appeared on Joan’s armpit. It was found to be a highly malignant metastised melanoma, and it was removed by surgery. Joan read a book that led her to do the Gerson therapy. She remains free of cancer today.

“Do you remember Carmen Wheatley?” I ask. “Yes. Very beautiful girl. Blonde hair. Had to sort her out. Did she not end up with you?”

“She is interesting me in Gerson.”

“Have you got cancer?”

“Yes.”

“For God’s sake, do not let the doctors kill you.”

“Carmen suggested that I ask you about coffee enemas.”

Delightful. I read War and Peace having mine.”

Joan tells me that the place to buy enema equipment is a health store in Paddington Street. I go at once.

“Tubes or bucket, sir?”

 I do not know.

“There are tube enemas, sir, and buckets. Different process. For yourself is it?”

He speaks softly, but the shop goes still.

“Sara, have we a tube?”

They unpack an object made of pink rubber. I say that I do not see how two pints of coffee can fit into the balloon at the end of the tube.

“Two pints? Sara, he needs a bucket.”

The Gerson doctor found by Carmen is Bernard Courtenay-Mayers. He lives in an enchanting house on Brook Green, west London.

“Has the therapy worked for you?” I ask.

“No recurrence so far.”

“Are the enemas crucial?”

“Essential. Four. Every day.”

“How does one actually . . . ?”

Bernard looks out a plastic bucket. Simple procedure: coffee at blood heat, lubricant guess where, lie down, insert, open a valve (reach for War and Peace), 15 minutes later sit on the loo.

September, week 3: I mention the Gerson therapy to my friend David Ambrose, who says he will check it out with Professor Ernst Wynder, the grand old man of cancer treatment in America (who had said I would be a “goner” if I had chemotherapy).

David rings back. “Wynder just said, ‘I would not put my dog on Gerson’.”

Carmen phones. “Michael, I rang the Bristol Cancer Help Centre and asked them about Gerson.”

“Yes?”

“The voice on the phone said, ‘We do not do Gerson. It is too stressful.’ I asked the voice, ‘Don’t you think death by cancer is stressful?’ End of conversation.”

“They rang off?”

“More or less . . . So I phoned Charlotte Gerson. Daughter of the great man. She runs the Gerson clinic in Mexico.”

“Carmen, wow.”

“As you know, I am doubtful about the enemas.”

“I did not know.”

“Coffee is noxious and they sound so disgusting. I quiz Charlotte Gerson. Or try to. ‘Your friend must understand,’ she says, ‘and you should, too, that every element in the therapy is there for a purpose. Do it all. Ask later’.”

“What is Carmen playing at?” asks Rachel. “One moment you are off to another consultant, next moment she has you scrubbing carrots.”

“She is looking at various options.”

“Looking at options is fine if she were giving you a tutorial. But you have cancer. It is role reversal gone mad. Why do you put up with it?” “There is a cancer therapy she is finding out about. The Gerson therapy. Joan Spencer did it.”

“Joan had cancer?”

“Yes.”

“I never knew. Joan is a good scholar and a sound woman. She tried carrots?”

“Yes.”

“Carrots cure cancer?”

“The juice seems to help.”

“So why does not everyone do it?” I buy Dr Gerson’s book, A Cancer Therapy. In an appendix he argues, “I am convinced that cancer does not need a specific treatment.”

This is an extraordinary statement. I tell Rachel that at the Royal Marsden hospital there was shelf after shelf of medical journals. Yet Gerson thought that cancer does not need a specific treatment.

“What can the man mean?” says Rachel.

September, week 4: At lunch, Christian Carritt takes my copy of Gerson and flicks through it.

“There is only one comment on myeloma,” I say.

I read it to her: “It may be added that leukaemias and myelomas need greater doses of liver juice and vitamin B12 . . . their metabolisms are much ‘deeper’ and more differently deranged than in other cancer types.”

And, regarding the vital liver juice, there is a reference in Appendix III: “On October 3, 1989, the Gerson Institute reached the conclusion that raw veal liver juice must be discontinued . . . this was based on multiple outbreaks of campylobacter gastroenteritis.”

“So I am deranged, more than in other cancers, and the remedy is deranged, too.”

“Michael, I think you are more pedantic than deranged.”

We tuck into our lunch.

“Is Oxford term about to start?” asks Christian.

“Yes.”

“What are you going to do?” “I do not know. Can I do my job?” “Give it a try.”

October, week 1: The fellows of my college, St Catherine’s, have just appointed a new master, the administrative and academic head of the college. Lord Plant was professor of political philosophy at Southampton University. He is also an active politician in the Labour party.

When we interviewed him as a potential master, he told us that as a young man he tried to become a monk. But he was defeated by two things. The first was the food. The second was the abbot, who asked one day, “Do you think, Plant, you could learn to love me?” He left, married and became an academic.

Lord Plant gives me a businesslike welcome and walks without comment to his study. I know that he is within his rights to retire me. Someone has to do my job: I am senior English tutor, there are up to 40 students and there are the administrative and academic jobs that are a large part of the life of any Oxford don.

Lord Plant reviews my illness and the medical options with the detachment of a philosopher. Then he tells me: “No easy answers here. But . . . the rebels are rather my sort: I will recommend that the college support you.”

October, week 2: Oxford colleges divide administrative jobs among their fellows. Sod’s law, I am in charge of the kitchens. As my food gets austere — even Gerson calls his regime “an unrelenting diet” — I am coaxing the kitchen into richer oxtail soups, grilled haggis, roast goose and fish cakes in the goose fat. My diet lapses in the face of a dish of scallops. Or a goat’s cheese brie, ripe and running. And I sniff, even sip, when some wonderful claret is brought out for a special occasion. But in large part I stick to boiled carrots, salad, porridge and fruit.

Joan Spencer comes to visit. She puts me in touch with a supplier who delivers organic vegetables each week. But there is an awkward moment.

“Claret?” accuses Joan, spying a bottle under the table. It is beetroot juice.

October, week 3: Carmen begs me to take on board an article by Linus Pauling and Abram Hoffer. Published in 1993, it is an analysis of 134 patients “with advanced cancer”: 101 were given vitamins, 33 not. Those with vitamins lived much longer.

Pauling and Hoffer go through the various types of cancer in their 134 patients. Numbers 258 and 270 are cases of myeloma. Number 258 died a year after being first seen, but number 270 was alive when the article was written.

October, week 4: Carmen rings Canada and asks to speak to Dr Hoffer. He takes her call. Yes, patient 270 is still alive.

October 30-November 5: I cannot find time to do the Chinese breathing exercise. I cannot relax enough. Perhaps the enemas will be a substitute. My friend Ronny Schwartz happens to phone from California as I am about to make my first experiment. I tell her.

“Oh boy,” Ronny says in a tone that I will not forget. The enema takes an hour. Dr Gerson demands four enemas a day just as Dr de Vries, who introduced me to Chinese breathing exercises, recommends three exercises a day: how do patients find the time? Off to London for acupuncture. Dr H pulls up my shirt to put in the needles. He laughs.

“Skin yellow. Like canary.”

“I am taking carrot juice.”

“I have patient who die. She buy sacks of carrot every week.”

“Cancer?”

“Yes. She buy sacks and sacks of carrots. Soon you look like a carrot.”

Needles in. More laughter.

“But, Dr H, your patient died?”

“She buy carrot 20 years. Yes, she die. Cancer. Die at 94.”

November, week 1: I am seeing pupils, giving lectures and attending committees, the usual work of term. I feel fine but there are days when I do not have time for breathing exercises and enemas. Dr Powles phones. When I met him in August, he asked me to ring if only to say how angry I was to have cancer. “And if you do not contact me, I will phone you.” We have a long chat. “Would you consider trying a course of chemotherapy — just one — to see how you respond?” he asks. “You have obtained opinions throughout the world. And if you find a better protocol of treatment, I will do it for you. But the time has come for action. That is my professional advice. Please take it seriously.”

November, week 2: I read, teach and lecture as if cancer does not exist. I follow my diet, more or less. I drink juices. I have an enema some days. I am using them as a substitute for the breathing exercise, which I never have time for.

November, week 3: Bad blood test. I am exhausted. Another test. Everything worse. I am ill. Some weeks ago I found a helper who scrubs vegetables, makes juices, boils coffee and goes shopping. He is now my lifeline.

I am visited by Alan Bullock, the founding master of my college and the historian of Hitler and Stalin. Alan tells me that when he was vice-chancellor of Oxford University he presided over elections to professorships. There would usually be seven electors, whatever the subject: some specialists, some outsiders, some with a senior academic position. There were lively debates. Elector X would attack the judgment of elector Y, even Y himself or herself. The exception was medicine. Medical electors would decide in advance who King Dog was, and when he or she barked the rest obeyed.

“Doctors are more like the army, Michael, than you can believe,” Alan tells me. “There is no point in seeing more specialists. I believe you will find a difference only when you go to one of the great research doctors. Catch 22. They do not have patients. But we have an exception here in Oxford.

“Our regius professor of medicine is Sir David Weatherall, fellow of the Royal Society. His Institute of Molecular Medicine is one of the great centres of research. David, however, is that rare combination, a researcher who also loves being a doctor. Right through his career, he has looked after people as well as doing science. Let me write to him.”

November, week 4: A new way of shortening telephone calls: “Hi! Super of you to ring. May I explain that I am hitched to an enema bucket?”

Drue Heinz — a benefactor to the university and many other causes — invites me to stay when I come to see doctors in London.

“Bring your helper and stay in my guest flat as long as you need.” I need quiet. Why not go to Scotland? Maria Whelan, a brilliant pupil, offers to come with me. I tell Benjamin Ross, a former pupil who became a friend, that I am going.

“But I will come too, Michael. Can I bring James?”

James Marsh was also my pupil at Oxford some 10 or so years ago. He now works for the BBC as a director of documentaries.

December: My diary is incomplete for the days in Scotland and I rely on the memories of Benjamin and James.

“One night we thought you might be dying,” says Benjamin. “You spent hours violently coughing up white foam. But you also insisted on your routines.”

“You insisted on going for very short walks most days, just into the garden,” remembers James. “The weather was foul. You also forced yourself to bake bread. The therapy said to have bread with no salt, and we could not buy any.”

Back to London. Drue Heinz passes a high test of friendship: who else would let Mayfair be invaded by coffee enemas?

Drue’s flat is quiet and my days are a routine of breathing exercises, juices, enemas, short walks and sleep. Drue coaxes me out now and then. She wants me to see that I can still be a part of life, although she is too skilful to put this into words. Friends unobtrusively join her in stopping me from being cut off: Olga Polizzi, Tessa Keswick and Romilly McAlpine. Benjamin and James come round when they can.

My plan is to join Rachel for Christmas in Oxford. She has friends to stay as usual and our flat will be very festive. But I am spitting up foam again and the weather is bitter. Drue goes away for Christmas and my helper must join his family. I persuade Rachel that it is best for me to stay at Drue’s. Benjamin makes juices. Christian cooks me supper one evening and Tessa and Henry Keswick ask me for new year. Drue comes back and insists on a party. There are only two of us but we celebrate.

The days are damp and dark, but although I am often alone in the flat things happen. The breathing exercises are easier. I develop a need to read about Russia so I can relax enough to start the enemas. And I continue reading afterwards as I sit on the loo. If I try to read anything else, my mind refuses.

I am to immerse myself in Russia for many months. It becomes a compulsive need. Why? Is it escapism? Cancer doctors have a habit of accusing patients of escapism: I seem to get it regularly. But put my reading about Russia in context.

If you have a cancer that is attacking your skeleton, is there escapism in the Chinese breathing exercise? Or enemas? Two pints of coffee up your colon is a distinct reminder that you are not well. Four times a day. Not to mention vegetable juices and a daily injection.

Thus a large part of my day is spent on cancer. Every day. How are you to spend the rest: letting your fears surface? Panic? Weighing the odds of what you do against the fact that orthodox doctors consider you “crazy”? Or do you spend the spare hours living somewhere else in your imagination?

January 1995: Ronny Schwartz rings. She has a guest house on the beach in California: why do I not come out? There is a famous cancer hospital in La Jolla. I dream of sun, beaches and quiet seas.

It is time for my appointment with Sir David Weatherall. At the Institute of Molecular Medicine, he comes personally to reception and takes me to his study. No phones ring and no secretary comes in. All my medical records are on his desk, but Sir David asks me to state the case as I see it.

I go through my history. “I hope I have not been obstreperous,” I say. “Obstreperous is too mild a word for you, Mr Gearin-Tosh.” His face is still, but his eyes are laughing.

“Do you think I am mad to try what I am doing?” I ask.

Sir David is a man who thinks for as long as he wishes before he speaks. A minute or two passes.

“What you must understand, Mr Gearin-Tosh, is that we know so little about how the body works.”

I am astonished. Sir David repeats his remark: “We know so little about how the body works.”

After discussion of my case, he tells me: “You have a swine of a disease. It is vital that you take care of yourself. Do not get tired. Do not get cold. Do not get wet. The university will support you in what you are doing, and if you need help do not hesitate for a second to ask. I am only a phone call away.”

We know so little about how the body works: I know by instinct that this is a turning point, but not why. Perhaps uncertainty is centre stage for all doctors. Why have I been so slow to see this?

February: I tell Rachel about Ronny Schwartz’s offer to fly me to California. Rachel is upset but she will not tell me why. I suspect that she has turned the textbook on cancer into an Old Testament prophecy: “The median survival time from clinical confirmation to death is under a year in untreated patients.”

She will not quite put it into words, but her thought is: why do I want to die in California?

Christian asks: “Are you going alone?”

“A pupil is coming. I need help with the carrots.”

“I suppose, if one is not up to it, the juice never gets made.”

“Nor the enemas.”

“How many a day?”

“Supposed to be four. I do not get beyond two.”

“Well done for that.”

Maria Whelan drives with me to Gatwick. We change at Dallas and step out into the warmth of San Diego.

HERE I stop my account. I have delayed writing for seven years, since medicine has a saying that if the patient is alive after five years the disease has gone away.

Year by year, I think I have more energy. But my haemoglobin remains depressed — Carmen calls me “sub-anaemic” — and my immune system is disordered. Another problem is my bones. They were first tested in California and they were found to be much too thin. “For God’s sake, do not take up parachuting,” said Ray Powles when I told him.

Raymond Plant, the former master of St Catherine’s, urges me to state my daily regime at the end of my narrative in 1995. It was essentially that of Max Gerson. The main points are 12 freshly made vegetable juices each day, with supplements of potassium solution, iodine, thyroid, niacine and pancreatin and a daily injection of liver juice and vitamin B12.

Dr Gerson prescribed four or more coffee enemas each day: I managed three on a good day. A castor oil enema every other day. In addition to Gerson, I took chlodronate twice a day to protect my bones. I also took vitamin C. Finally, no day passed without the Chinese breathing exercise. When I could, I did the exercise twice.

What works for me is not a prescription for you, however. Nor will most people want to try what I did. Each patient should explore their own way with their physician. Does the fact that I am alive prove anything? No. Only that I am not dead. I am not so rash as to think I have escaped.

© Michael Gearin-Tosh 2002

Extracted from Living Proof, A Medical Mutiny, by Michael Gearin-Tosh, to be published by Scribner on February 4 at £14.99. Copies can be ordered for £10.39 plus £1.95 p&p from The Sunday Times Books Direct on 0870 165 8585. Some of these details were stated incorrectly last week, for which we apologise. Living Proof also includes an extended technical medical case history of the author’s illness and therapy, and a critical analysis by Professor Robert Kyle of the Mayo Clinic, Rochester, USA.

March 14 2002  How dare I question the experts?