In August 2013 doctors gave me a death sentence! With that ” power gaze” the philosopher Michel Foucault described, they took away all hope and told me to prepare for the end. I searched the medical literature for some encouragement and the best I could find stated; no one had survived 4 years so I set myself 3 targets around my young children. Aim for the stars and you might reach the Moon has always been my philosophy. My first target was September 2015 when my twin girls Molly and Isabelle would start secondary school. The second was today March 21st 2017, my 60th birthday, I never been much for birthdays, (uncool at boarding school and I had 9 there) but it was probably more realistic than my third target, September 2017, a month over the four years, when Eloise would start secondary school, that would be miracle teritory. Exactly a week ago my CT scan revealed I was a “Miracle Man” not only would I reach all my targets, I will do so cancer free.
I was given the all clear by the Royal Marsden in August 2012, during the London Olympics. To celebrate and to demonstrate why I was the last person to believe in Lance Armstrong ; in May 2013, 12 months after having my colostomy reversed, and finishing chemotherapy I completed one of the toughest Marathons in the world on the Great Wall of China. So when I attended the Royal Marsden for the results of my annual scan in August 2013, I was not concerned. I wore “The Wall” T shirt, as I wanted my consultant to autograph it and use it for my Face Book profile picture.
The Registrar was not someone I knew, my consultant Shelia Rau was on vacation. How are you feeling she asked: “Fantastic! The best I have felt in 30 years”; I had run 5 miles the previous day in the fastest time since I was in my 20s. I have got some bad news; she said; For some reason I though she was going to tell me my car had been clamped, as I was always squeezing into a small space reserved for motorbikes in the car park.
The cancer had not gone away it has spread to para aortic lymph nodes and is “incurable” she said. “How many lymph nodes are affected”; I asked,hoping it might mean something. They are not “tennis balls” she said. I could not understand why spread to lymph nodes was “terminal”. I now know the area is referred to as ” tiger land” and patients would probably not survive any surgical intervention. “How long have I got”? “Average life expectancy with chemotherapy is 20 months”, she stated. In the letter sent to my GP, that number was extended to 26 months.
I left, my head was spinning, I called my partner Janette; “stop messing about”, she said; “it’s not funny”. My original diagnosis of Rectal cancer was on April 1 2011, April fools day. So I have got used to these reactions, when the news was grim. My personality means, I am describe bad news as though I have slipped on a banana skin, looking for some humour in the darkest of places. The family and I were leaving for our summer vacation in Italy the following day and I was promised my usual consultant would call as soon as she returned from holiday outlining the treatment plan. Subliminally this was my last ray of hope, perhaps she would tel me it was a mistake, the Registrar had looked at the wrong scan. Unfortunately it was real, I would start 12 cycles of intravenous chemotherapy on my return from Italy. I was devastated and not having touched sugar or my favourite desert since being diagnosed, I pigged out on Italian Ice cream, is there anything more pleasurable and I decided from now on, enjoying life was my number one priority and while I did not want to gain weight again, I would have an ice cream every week.
I was not keen on doing Chemotherapy again, although Shelia said I had tolerated chemotherapy well, (I had not lost what little hair I have haha). Chemo caused a peripheral neuropathy in my hands and feet, I was unable to button my shirt no feeling in my feet could not play tennis. I was left impotent, but mentally as horny as ever not a great combination. It had destroyed my quality of life but I was still able to work and do normal things. Fear does strange things to you, so I agreed to repeat this course of treatment which had obviously had not worked in 20011. They had removed the tumour with radiation and surgery, but chemo was supposed to prevent cells escaping and nesting in distant tissues.
I started Chemo in October 2013, after four cycles, I was experiencing the peripheral neuropathy again and told the consultant I did not want to continue the treatment, she was surprised, said I might only live 6 months if I stopped. I told her I was not afraid of dying I was afraid of living with no life. In my head was the definition of insanity, doing the same thing again and again, expecting a different outcome, there had to be something else. A fortune teller had recently told me I would live to 85 and although I am not into that sort of stuff, bizarrely it had given me a lift, better than being told not to make any long term plans haha. I had had a wonderful life, few regrets. The day I told Isabelle Isabelle I was dying, she said; “I would rather have a Daddy like you for ten years, than a boring one for twenty”; I felt my life was complete, my children were strong individuals, who would succeed in life despite the adversity they would encounter.
The CT scan in December 2013, revealed the metastasis had not progressed so the chemo had done something; (perhaps the five day fasts I had done prior to each session had made a difference, it had in mice in a study haha). I was a good candidate for targeted radiation and again as in 2011, twenty sessions of radiation fried the tumours in the Lymph nodes around the Aorta. Preventing cancer cells spreading was the concern, and again chemo therapy was suggested and I refused.
A Danish friend had sent me some nutritional information, which included information about Cannabis oil, The difficulty when you have cancer everybody wants to help, with books and info. People write a book about a miracle cure and they are dead a year later, or their “cancer” was only stage ‘ and easily treated. If I got a pound for every miracle cure suggested, I would be a rich man, so after a while you just accept everything politely and just file it away. However there was something about Camila’s message that was different. She was the daughter of a team mate from my time in Denmark. She contacted me out of the blue, the last time I had seen her, she was 14 in the mid 80s. It have inserted our texts because they do convey how desperate the situation was and her strong “belief” in what In should do next. I needed something that would finish off the cancer and prevent it spreading which is what chemo was supposed to do in 2011. I had nothing to loose so decided to give the oil a go and sourced some oil from Canada.
The first week on the oil, was horrendous. Psychotic thoughts and paranoia, thought I was dying and Janette caked an Ambulance. I found the FaceBook forum “cannabis oil success stories” a mine full of information of people in the same situation seeking a miracle and guiding each other, from their own experiences and mistakes self medicating. Over a four month period I took sixty grams 0f CO, at night, building up to a gram a day taken in suppository form (reduced the high).
I had another CAT scan in August 2014, which was clear and another in November, in fact every three months over two years. I am bound to die of cancer one day the amount of radiation I have been exposed to, in fact in June 2015 I had a malignant melanoma removed beside the tattoo the radiation was targeted at, so I have had two different malignant cancers.
Scans in 2015 became particular stressful, Every time you go for results you are thinking; it has to be back this time, it was probably the darkest period of the six years. How anybody could suggest a penalty shoot out in a World Cup final is the most stressful thing imaginable is deluded, thats just a big ego terrified of failure, football is just a game nobody dies at the end and I would swap places any time.
I remember thinking I would rather have terminal cancer , than suffer from depression, you never get away from depression, the knot is always in your stomach, you can’t get away from it. Being dead must seem like a relief compared to worrying all the time. I never feared death, however I feared how the end would come, would I be in great pain would I loose my cognitive faculties and this was on my mind constantly in the weeks preceding a scan. If I could have the time again, I would have drawn a line and got on with my life. We have this amazing technology which can provide so much information, it is difficult to walk away, but I am concerned about the cellular damage it has caused, increasing my risk of more cancer.
The last scan in April 2016 was particularly stressful? They were bound to be right this time, I am thinking. They are wrong again, in facy the only person who has not been proved wrong so far is the fortune teller. I had dodged another bullet Amazing! so much for the “ scientific evidence” the biomedical model puts so much faith in and Skeptics of Alternative and Complementary Medicine swear by.
When I was diagnosed I was told survival rates were 80%, those are good odds so it never occurred to me to question the orthodox medical methods to treat cancer, basically the same ones used since the early 20th century, a wonder full read is “The Emperor of all Maladies” a “biography” of cancer, the author presents it as progress, I was not so sure.
After the surgery demonstrated the cancer had spread to my rectal lymph nodes, survival dropped to fifty/fifty. However chemo apparently improved those odds by 13%. So 63% is much better than 37%. When you hear the term “survival” you instinctively believe it to mean “cure”, it just means you have been kept alive for five years after diagnosis, you could be riddled with cancer and die one day after fivee years and you tick the box “cancer survivor”.
Then in August 2013 I was told, “survival” was 0%. I supposed when you put out so many predictions you are bound to get one right. As I was still alive on April 2016, the cancer scientists were able to tick the box “cancer survivor” and put me in the 80% who survived and ignore what had happened in between. No doubt where the phrase; Lies, dammed lies and statistics came from. You would have though, scientists would be doing tests on me, trying to understand why I am still cancer free, could it be applied to other groups, what made me different. My sucess will be dismissed as ‘anecdotal evidence”.
There is one book all people with cancer or wishing to prevent it should read it is David Servan Schreiber’s “Anti Cancer” Early on he speaks about how scientific data is analysed. It forms a bell curve where the bulk of the subjects are plotted, that is how average life expectancy is calculated with a person with a specific cancer at a specific stage. The curve tails of to the right, these are people who did not respond like the average, they lived for five and and ten years and in the scientific literature they are called the “anecdotes”. “Evidence Based Medicine” bases its predictions on the median of the group. An experienced practitioner might choose to focus on some case studies at the tail of the curve, but risks being called “unscientific”. The tail is where I wanted to be and every person who has ever had cancer wants to be, not with those who were going to die after 20 months. I wanted to be one of the Anecdotal evidence, those ignored by the “evidence based practitioners”. Funny thing one day I was wondering could I have possibly stumbled on something that could prolong my life that doctors were not aware of and a patient said to me, I have been seeing doctors for years and they have been feeding my drugs with side effects, how come no one told me about chiropractic and that was the moment I knew it could be possible that I might be cured.
I managed it, no doubt most of the focus will fall on the Cannabis Oil (CO))regarding my survival and no matter how you look at it, CO and the amount of Chemo I had in 2011, was the major difference between my treatment in 2011 and 2014. In 2011 I was cancer free for perhaps 9 months, now I have been clear for 3 years and 3 months. I also did lots of other things changed my lifestyle as advised by David Servan Schreiber and the wonderful people at the Penny Brohn Cancer Center which I attended in 2011, so there were many factors (confounders) which make me reluctant to give all the credit in (CO), in clinical science as opposed to Physical science there are many factor which affect outcomes, in my case the factors outside the biomedical prescription would seem to have carried me into the tail end of the bell curve and helped me survive so long. We are all going to die one day and I will be no different, and no matter how you look at it, I have managed to keep the grim reaper at bay far better than the bio medical model had predicted, no mater what happens or how I die in the future.
My Joy is also tinged with sadness, last night I was looking at e – mails I received in 2013 after getting the bad news, offering encouragement for the life that still lay ahead of me. One from my closest friend in the world John Costeloe and another from John O Neill, both I had know since I was 11. Cancer took both of them in 2016 and while I believe cannabis oil, prolonged John Costeloe’s life it was not a miracle cure. However there is definitely something in it, that plant you can grow in your garden, has healing properties for a whole range of conditions, which which are being ignored in the UK. If nothing else my cancer experience has taught me one thing, cancer is not just a disease, it is a multi billion industry with vested interests who have investments to protect.
I realise for life to have meaning you have to have goals and now that I have passed 60, I am setting a new one. When I was in Holland I visited a pharmacy extracting cannabis oil for children with epilepsy which was transforming their lives. Sick children gave me strength, they made me feel lucky that it was me that was ill and not one of my children, would I have handled illness so well had been them? probably not.
I will never forget the night Frederik beautiful sister died and the pain Joan felt, Thea and I were diagnosed at the same time, she had her whole life in front of her and Leukaemia took her. Those kids I saw having radio therapy in the Marsden, with parents who looked as though they had not slept in months, now thats not fair, their lives have been so short, so even in my darkest hour I felt I was luckier than those parents.
So my next goal is to help, the parents of Alfie Deacon a young boy with rare epilepsy, which is not being helped by traditional medications. He needs to try what is available in the US and Holland to children with Epilepsy; Cannabis Oil. In the UK it will require a neurologist with the ability to think outside the box and do a case study, to see if the oil would enhance Alfies quality of life
Curiosity is why Alexander Fleming discover penicillin, sadly much scientific endeavour in the pharmaceutical industry is driven by commercial interests rather than curiosity and a desire to help mankind. We caring people must change that attitude.