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The butterfly effect

MagazineDecember 2013 (Vol. 24 Issue 9)The butterfly effect

The butterfly effectChris Woollams tells the story of how he came to start the cancer charity CANCERactive after his daughter was diagnosed with a brain tumour

The butterfly effect

Chris Woollams tells the story of how he came to start the cancer charity CANCERactive after his daughter was diagnosed with a brain tumour.

"Chris, it's awful. Catherine's got a brain tumour"- eight words that were to change my life.

There is a theory that the effects of a butterfly flapping its wings in Hawaii can be felt in London. Catherine, my daughter, was just such a butterfly. Aged 22, she had it all-intelligence, good looks, a degree from Bristol University, a great boyfriend and a job at Vogue magazine. And now a terminal brain tumour.

It's one of God's little games. Before you come to Earth, everyone is allowed to pick six cards from the 'good things' pack, but you have to take three from the 'bad things' pack too. We're here to learn, I suppose.

But was it Catherine who was learning something, or was it a trial for those around her? I know that when her mother took her to Brazil to see the spiritual healer John of God, she opened her appeal to him by saying, "I have brought Catherine here to see what you can do for her." He replied, "No. She has brought you."

From the very second those original eight words were spoken, I knew my wonderful daughter was dead. Yet I'm no pessimist, quite the opposite. Within four days the surgeon was cutting into her skull and putting his scalpel into my baby's brain. Can you imagine the horror? I could still remember Catherine vividly in her Red Baby Grow; 'superbaby', we used to call her, for she was everything you could want in a child. It was all so very, very hard.

At the time I wrote to another father who was losing his own daughter to melanoma. We're a special club. Only we know the secret price of admission.

Yet I was never sorry for myself, only for poor, darling Catherine. A few days after the operation, the truth was out: grade 4 glioma. Look it up on the internet: it says you're dead. No hype, no hope. Dads like to think they can protect their children from all the world's atrocities. Now Catherine could read about her own forthcoming death on the web.

The drugs don't work, the physicians are impotent, the cancer spreads throughout the brain, your intelligence withers and with it your senses. For the last six weeks of her life Catherine couldn't even see, although she pretended she could so that those around her wouldn't be troubled. You end up in a hospice lying in your own excrement because of the cocktail of morphine and drugs they give you to take your pain away. If there could be an advertisement for cancer prevention, this is it.

And how did my darling Catherine feel when she awoke at four in the morning during those first few weeks after diagnosis? Poor baby.

Out of retirement

Back in 1972 I'd left Oxford University with a biochemistry degree, choosing to go into advertising rather than become a doctor, much to my mother's consternation. Twenty-two years later I sold my advertising companies for more than enough money to retire. My interest in health had always been strong, so I started my new life by studying nutrition, body energy, Reiki, and health and fitness simply for self-amusement, or so I thought.

From the moment Catherine's cancer was diagnosed, my personal gearbox clicked into overdrive. I spoke to experts in London, France and America. Even the top brain tumour specialist in the world, Dr Henry Friedman at Duke University Medical Center in North Carolina, rang me back after finishing with a patient.

But they all said the same thing: surgery, radiotherapy, chemotherapy, death.

Ever more determined, I started reading avidly, scouring the internet and talking to complementary and alternative therapy experts. I wrote a diet plan for Catherine, even buying the foods and supplements and taking them round to my ex-wife's home where Catherine was staying. Catherine embarked on courses of cranial osteopathy and healing, yoga and exercise classes. Unfortunately, divorce books don't have chapters with advice on coping with terminal illness in your children. My ex's new husband told me in no uncertain terms that no one was interested in my mumbo-jumbo.

Catherine's oncologist was a troubled soul. How do you fight a war when you have no weapons? Even the mighty Lancet journal stated that the drugs didn't work. There was no cure.

By a quirk of fate, friends of friends were in prominent positions at St Thomas' Hospital so I knew that the prognosis was dire: six months maximum. All the oncologist would say to me was, "Don't worry. We'll give her a good summer." The other memorable line was: "We may not have the drugs to cure you, but we do have drugs to make sure you have a relatively painless death." Where do they learn this stuff?

But the inevitable didn't happen. At six months Catherine was alive and kicking. And with every three-month scan she improved further, easily passing the 18-month 'record' that St Thomas' had for this disease. My contacts said that behind the scenes there was a grudging respect for what I'd been doing. Catherine herself was a force to behold. Disciplined, wise, always caring of others, never complaining, a curious mixture of resignation and determination. I only ever saw her cry once, prior to radiotherapy, when she simply wanted to know the unknown,

"Why me?"

The learning curve

We'd learnt so much in such a short time. Indeed, I still learn something new every day. I'm sure all newly diagnosed cancer patients want to find out as much as possible as fast as possible, especially those with just six months to live.

Two top oncologists suggested I write down what I had found out. Catherine had left the book-reading to me as she found them all too negative, complaining about drug companies or the government, when patients just want to be told information that could improve their personal chances of beating the disease. Who needs politics when they fear they are dying?

Catherine suggested I create a magazine with easy-to-read, easy-to-use articles, information and tips on all the things a patient might do to increase his or her odds of survival.

"I'm not interested in cancer. I'm interested in living," she exclaimed. And so I wrote a book, Everything You Need to Know to Help You Beat Cancer, and we launched the magazine icon (Integrative Cancer and Oncology News) to help people short-circuit the six-month learning curve.

We don't dwell on the problems or the negatives. And we do understand that people don't lose their mental capacity the moment they are diagnosed. They don't suddenly become stupid or vulnerable like some people try to make them out to be, pushing them to accept a life where only doctors know what's good for them.

Both Catherine and I were becoming increasingly frustrated. If the drugs don't cure and official medical orthodoxy has so little to offer, why do they so belittle and decry the complementary and alternative therapies that show promise? After all, especially with brain tumours where a blood-brain barrier is designed to stop chemicals passing across it, surely, logically, there would be more potential with natural compounds?

We found so much information in our searches. For example, preliminary research had shown just such a potential with natural compounds like chokeberry, coenzyme Q10, fish oils, curcumin and Echinacea. But could the research team get funding to conduct the required clinical trials? No, of course not. Big Pharma is just not interested; there's no profit in natural compounds. They can't be patented.

Catherine met Dr Francisco Contreras of The Oasis of Hope in Mexico when I interviewed him in Southampton. He told her that his vitamin B-17 metabolic therapy, for which he has become infamous, doesn't work with brain tumours. In fact, he uses the full range of chemotherapy and radiotherapy at his clinic together with nutrition and other complementary therapies. He also pursues new alternative therapies and one, ozone therapy, had started to show promise. But when Catherine told her London oncologist that she was contemplating going to Mexico, his answer was simple. "You know, people have gone to Mexico and have never come back."

Catherine had heartburn. Her oncologist made her list all the supplements she was taking. When she reached B-17, he exclaimed, "That's it. It contains cyanide." Not surprisingly, when she stopped taking it at her mother's insistence, the heartburn did not go away. Of course the heartburn had nothing to do with the cocktail of drugs, steroids and antiepileptic agents, did it?

I remember reading an article about how glucose was not just the favourite food of cancer cells, but almost the only food they needed. Cancer cells were inflexible, whereas healthy cells could use other fuels such as fats. I put it to the oncologist that maybe one approach was to reduce her blood glucose levels; after every operation, Catherine's hospital diet was ice cream and a soda with added sugar. The oncologist turned to a colleague and laughingly said, "Chris wants to cure Catherine by stopping glycolysis!" As if anyone had ever heard anything so stupid.

So just how does this pettiness, closed-mindedness, this not-invented-here attitude help a cancer patient?

And frankly, with hindsight, the doctors were WRONG. Ten years on, I know far, far more. But should they not have been 10 years ahead of me, as it is their 'specialist subject'? In 2012 the American Cancer Society produced a report (which has subsequently been endorsed by America's top cancer body, the National Cancer Institute) that stated that, since 2006, there has been an "explosion" in research into complementary therapies, and there is "overwhelming evidence" that complementary therapies such as diet, weight control and exercise can increase survival and even prevent cancer returning.

The cancer returns

Sadly, flushed with all this success, after a couple of years Catherine returned to the more normal life of a 24-year-old, smoking and drinking and stopping the exercise and supplements. What goes through the mind of a young woman when she is told she has beaten the invincible? In 2004, three years after the initial diagnosis, the cancer returned.

Best practice kicked in: temozolomide is a drug over which there was an incredible fuss after NICE (National Institute for Health and Care Excellence) refused initially to allow its use in the UK. The drug was also initially not approved by the Food and Drug Administration (FDA) in the US because the overall results were too low.

But since 2004, there is supposed to be a test to determine if you're one of the 'lucky' few that it might work on-although no doctors in the UK seem to use it or know about it. On average it extends the tumour-free period by two months and six days.

One round of this drug flattened Catherine's immune system so badly she could not repeat the treatment.

"Don't worry. We have a triple-drug combination called PCV with a 75 per cent success rate," my ex and Catherine were told. (I wasn't allowed to see the oncologist; I was trouble.)

"Seventy-five per cent success at what? Surviving five years? Surviving two minutes? Living until you're 90? What?" I asked. You can see why everyone thought I was trouble. No answer.

And that was when I started to show my anger and frustration-and my sadness for the cancer patients of Britain. It is borne out of double standards and unfairness.

The very same people who criticize complementary therapies under the banner headline of 'No Clinical Trials' should put their own houses in order first and ask themselves whether they really think the clinical trial results they praise so much are sometimes worth the paper they're printed on.

The drugs in PCV (procarbazine, carmustine and vincristine) have been tested individually and as a triple agent. As a triple agent in clinical trials with just 24 people, 75 per cent did see a response of some sort. I won't go into what kind of response or how long it lasted, as the data are almost non-existent.

Far more worrying is the Cedars-Sinai review of seven such clinical trials: in one of these trials (this time with all of 32 patients), almost two-thirds had a negative response: nine people suffered haematological (blood) toxicity and 10 had treatment-induced toxicity.

The reviewers also stressed it was important to incorporate a strict dietary regime when using PCV because some foods interact badly with the drugs, causing severe health problems (apparently eggs cause a bad reaction with procarbazine), and that the overall health risks when using these three drugs together are "not insignificant".

It's like taking three atomic bombs to kill a terrorist hidden in the mountains. Catherine and her mother were never told any of this, which is why I shake my head every time I read another sceptic's comment about complementary therapists creating 'false hope'. They don't live in the real world.

Again, Catherine had her white cells so destroyed by PCV that a second round of the cocktail was impossible. Even the injections she was given failed to resurrect them. But my mumbo-jumbo of cat's claw, Echinacea, Astragalus and curcumin did bring them back to life, although, as we later found out through blood tests, she had absolutely no natural-killer cells left. She was fighting cancer without a hope.

Catherine was now dying. And those around her fervently believe the drugs made it a whole lot worse. How do you fight a cancer when you have no immune system?

I took Catherine to a metabolic-type practitioner in Harley Street and paid a fortune for analytical blood tests looking for yeasts, microbes and parasites. Incredibly, in three and a half years, no blood test had ever been taken by her team of oncologists. The tests showed she had both a fungus (yeast) and a virus in her brain. "There's no point in giving her any drugs for these as the drugs would probably kill her," said her oncologist, without a hint of irony.

Scott Peck in his book The Road Less Travelled said that tackling our problems is how we grow up in life. I know we have all grown up. My ex is now a qualified reflexologist, and her husband goes to the gym and health farms. They have new diets and new healthy lifestyles. So much for mumbo-jumbo.

Me? Well, I suppose I just want to help people give themselves the best possible chances of beating this awful disease. I want to help people take some control back in their own lives, help them increase their knowledge, help them make more informed personal choices. I've found out so much that I now know where to look: I've read the research that experts say does not exist, and I want to pass it on. It's about fairness, people's right to know. It's about telling the truth-something that doesn't seem too common in the 'Cancer Business'.

And it is a business, make no mistake-one worth $70 billion in 2010. One pharmaceutical CEO was on Bloomberg News talking about "maximizing the lifetime take from a consumer". The World Health Organization produced a report in 2012 stating that the whole pharmaceutical chain was corrupt from top to bottom.

Some sceptics are employed by Big Pharma; others write controversial articles so that people protest on their 'blog' websites. The sceptic then collects the innocent person's data and uses them for private gain.

The website of CANCERactive, the cancer patient group I set up after watching Catherine suffer, has been hacked, our key staff was sent internet viruses, and one had her house burgled and all the computers (even two broken ones) and a cheap hard drive stolen. The thieves left gold watches behind. The police called the robbery bizarre.

Sceptics also use the internet to rubbish anyone who tries to say that complementary therapies work or that there are alternatives. They steal Twitter accounts and launch fake websites so genuine cancer patients find it harder to access information on alternatives to drugs. They use the outdated 1939 Cancer Act to silence private doctors specializing in cancer.

These people are the new quacks-the 'Black Quacks' as Catherine called them. They need to be exposed.

Ten years after Catherine was first diagnosed, we interviewed Dr Henry Friedman at Duke University for icon magazine-he had been one of the first of the world's leading experts I had turned to when we first got her diagnosis. He told us that at the time an air hostess called Amy, also in her early 20s, had also been diagnosed. Friedman gave her an 'alternative' treatment-dendritic cell therapy. She took over 20 supplements and built a diet and exercise programme. She is alive today with two children. Friedman calls it 'Enlightened Medicine'. He says that so long as it does no harm, he encourages patients to build an integrative programme.

He also says that believing that cancer-especially gliomas-can be cured by just one drug is asking far

too much.

Enough-I will not dwell in the trap of negativity Catherine identified. I only tell you all this so you will better understand our point of difference. At CANCERactive, in our magazine and on our website, we do not enter into this squabble because it does not benefit the person who matters: you, the patient. It's what Catherine wanted: the whole truth. It's the patient's right to know all the options so they can make the best, most informed choices for their own lives.

The butterfly is still flapping her wings.

Website for CANCERactive: www.canceractive.com. To obtain past and current issues of icon magazine, you need to be a member of CANCERactive, so go to the website or call 0300 365 3015.

A charity is born

Chris Woollams thought he had his life worked out. He had climbed to the top of the advertising industry: he was managing director of the agency Publicis by the time he was 31, and became chairman of the Ted Bates advertising conglomerate three years later. In 1986, Ted Bates was bought by Saatchi and Saatchi, and Chris was invited to jointly chair the new enterprise.

Instead, he set up his own company, launched it on the stock market and, a year later in 1995, retired, claiming he had reached his "sell-by date". He spent his time between London and Thailand, playing golf or chess at every opportunity.

Then in 2001, everything changed when Catherine was diagnosed with stage 4 malignant brain tumour. Although he had always had an interest in health-and had studied biochemistry at Oxford University-he wasn't prepared for the challenge.

What he quickly discovered was that medicine had no answer to Catherine's cancer and the oncologists' prognosis was a six-month survival. Chris decided to do his own research and found many promising alternative therapies that might help Catherine.

In trying to save her life, he created a new one for himself. He founded the charity CANCERactive, which is now the top alternative cancer charity in the UK, and publishes the magazine icon to help many thousands of people with cancer understand all the options open to them.

Although the charity is entirely philanthropic, Chris has been targeted by sceptics and accused of cashing in on the death of his daughter. He has successfully sued the people who committed this libel, but the charity-and What Doctors Don't Tell You-continue to be attacked by those who don't want you to know about alternatives.

Visit the CANCERactive website at: www.canceractive.com

The other adman who wants better cancer care

There are extraordinary parallels in the lives of Chris Woollams and Maurice (now Lord) Saatchi. Both reached the pinnacle of the UK's advertising industry, and both worked together for a short time after Saatchi and Saatchi bought Chris's Ted Bates agency. Both have witnessed a loved one die of cancer and were shocked by the limited response of medicine. And both were so appalled by what they saw that they've decided to do something about it.

For Chris, it was to set up a cancer charity and patient group to tell people about all the alternatives now available. For Lord Saatchi, it has been the proposal of a private members' bill that would allow oncologists to try remedies other than the standard response of chemo/radiotherapy.

Saatchi's story began in December 2009 when his wife, author Josephine Hart, complained of stomach pains. A malignant, and inoperable, form of ovarian cancer was diagnosed, and Lord Saatchi watched helplessly as she went through the rigours of chemotherapy. "This disease is monstrous, remorseless, relentless, merciless, and the treatment of it is medieval, degrading, ineffective," he has said.

Josephine died in June 2011, aged 69.

But although Lord Saatchi is one of the UK's most powerful men and once the vice-chairman of the Conservative Party, his Medical Innovation Bill looks likely to fail.

Government insiders have told him the bill will be blocked, while officials at the Department of Health have told him the bill is unnecessary-and one civil servant even told him "there is already a cure for cancer".

Saatchi has described the obstruction as a "tragedy for cancer patients and their families".

If the bill fails, he already has plans in motion for a new bill that clarifies the difference between "responsible innovation" in cancer therapy and "reckless experimentation".

That makes another thing that Saatchi and Woollams agree on: there has to be a better way to deal with cancer.


Thinking yourself well

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