Given just months to live; then “spontaneous remission”, a miracle or just cancer sense?

Friends organised a “last supper” for me after my terminal diagnosis; These were the table mats.

Every year I am offered an appointment with an oncologist to see how I am, it’s usually with a registrar rather than a consultant. If it’s one I know I will start the conversation with “don’t look so depressed because I am alive and cancer free  just because it was not chemotherapy that did it; they will give me a smile and ask how I am and I will ask why no one has written a case study about me? After all I had read in the medical literature that no one had lived 4 years with metastasise to the para aortic lymph nodes, never mind, being cancer free after 4 years.

One consultant assumed the “treatment had worked ” not realising, I had stopped chemotherapy, because it was the same treatment I had had in 2011, which had not stopped the cancer from metastasising  in 2013, but dismissed the possibility that cannabis or anything “alternative” had anything to do with the remission. Most recently a consultant suggested the metastasis may not have been malignant??? Which of course must be a possibility in which case how many people are given terminal diagnoses and unnecessary treatment which finishes them off when in fact the doctors were only guessing that the patient might die

No one knows why I am still alive, friends have focused on the Cannabis oil but I have always believed there was much more to it, successs has many parents, failure is an orphan. This is the problem with Evidence Based Medicine EBM, unlike physical science which can be reduced to a few variables; clinical science has hundreds, possibly thousands of variables that could be considered for each patient and of course academics can’t do that in their research. They base their conclusions on an assumption that there is an average patient who will respond in an average way. Which is fine when the average shows a positive result. When the evidence offered me 22 months with chemotherapy and then the possibility of only six if I stopped, the last thing in the world I wanted, was to be is Mr Average in the BellCurve, I wanted to be in the tail of the curve, the ones the academics dismiss as “anecdotes”

The weird thing about my cancer experience I never thought for a minute that it would die, I remember hearing the news for the first time and the Colo Rectal cancer nurse from McMillan Caroline Burke took my hand, because I was making fun with the surgeon Ian Blume and reminded me that Cancer was a *Serious illness” and informed me how they could support me through the illness. I told her I would be fine, did not need any support and when I was better I would like to show others how I did it. I remember the look she gave me, as if to say; You have no idea whats ahead of you and all that enthusiasm for helping others will soon be knocked out of you: She was absolutely right on that score, in fact the one conclusion I have no doubts on is that, its the nurses who understand the cancer patients best, way better than the consultants do and its the nurses who hold their hand and get patients through the dark periods when you are loosing the motivation to go on.

Many people have described me in the kindest way as being “mad” , a girlfriend once described me as “narcissistic”. Having looked up the diagnosis, I could see what she was talking about, perhaps there are elements of insanity in us all and perhaps it helped not burden me with the emotional trauma of the disease.  I have been ADHD all my life, another medical label and it would be fair to say I was in denial about my limited life expectancy as I tried not to think to far ahead and live in the moment.  I have never taken my own life too seriously, not always been easy for friends and family, but many  have come along for the ride. The cake I was presented with on my last night in Copenhagen in 1990 might illustrate the 12 years of party life I had in Copenhagen, the cake is ironic when one considers chemotherapy made me impotent. That night was supposed to be the end of my youthful days, and 21 years later cancer helped me discover what it was like to be a big kid again.

You would need a psychologist to explain why I never fell into a state of depression and was able to find silver linings and humour under ever dark cloud I encountered. One of the most comforting reads during this period was the Dr Seuss book “Oh! The Places You Will Go” People who were at Chiropractic College with me will know this was my solution for every depressed student who was not coping well. I was President of the Student Union and read it publicly many times, its the only present I ever give to people; I don’t do Christmas or Birthdays (even with my own children) however, I have given this book to hundreds of people and it should be the first reading for any cancer journey. Burning Man is an annual  festival  that takes place in the Arizona desert and recently one of the creations was this wonderful video based on the book.

I recently came across this article by Kelly Turner PhD, based on her best selling book “Radical Remission” 10 Things I Learned About Living From Studying People Who Almost Died” which more than anything else I have read, articulates my own cancer remission experience. The orthodox approach removed the primary tumour with radiation and surgery, chemo did not prevent it spreading and left me with side effects, peripheral neuropathy, a malignant melanoma at the radiation target site and impotence which after 6 years is showing signs of recovery without drugs. The book I am trying to finish could be described as attaching humorous stories to the principles she Turner has defined, its my own story rather than a “recipe” for “curing” cancer. I dont believe you cure cancer, you remove the tumour that could kill you and try to adapt to the stressors, physical, chemical and emotional; which may have caused it in the first place and try to prevent it reoccurring. I am bound to get cancer again one day the amount of radiation I have been exposed to.

Kelly Turner states she studied cancer patients who were told they had only months to live, that there was nothing more that could be done, and yet are walking around cancer-free years later. She call these cases “radical remissions” — instead of spontaneous remissions, as they are more commonly referred to. After analysing over one thousand cases, she has concluded that there are common threads among the behaviours of the people who have radical remissions and presented her hypotheses for her PhD.

In the article she states that, “it will take many more years of research before we can draw any firm conclusions”, It would seem that overcoming cancer against all odds is more than just a completely random miracle. You would think doctors were queuing up to write up a case study about me; on the contrary; when I was first diagnosed in April 2011 I was told survival rates were 80% and in April 2016 doctors were able to tick that box, strengthen the statistical “evidence” that their approach did work and ignore the fact I was only given months in August 2013 despite their best efforts.

Below are 10 factors that stood out for Kelly Turner after studying this group of  survivors: the pictures are how I relate these factors to my own experience.

1. I need to be the CEO of my life.

It was my decision to stop chemotherapy and try cannabis oil

When their doctors told them, “There’s nothing more we can do for you,” radical remission cancer survivors had no choice but to take control of their health. In hindsight, all of them wished they had taken an active, as opposed to passive, role in their life decades earlier.

2. No emotion is worth holding onto for too long.

In 2007 i was elected onto the Chiropractic Regulatory Body. I walked away from Chiropractic Politics after diagnosis

Radical remission survivors believe that holding onto emotions like stress, fear, anger, grief, or jealousy weakens the immune system (and many studies agree with this). Even happiness, when held onto, quickly turns into nostalgia for the past, as opposed to joy for the present. Therefore, radical remission survivors live life under an “emotional waterfall” – they let emotions in, feel them fully, and then release them fully.

3. I should really eat my veggies.

Salty, fatty, sugary food tastes amazing, I know. But that’s only because our hunter-gatherer taste buds still think those nutrients are hard to come by. Radical remission survivors have gotten over their addiction to sugar, carbs, fat, and salt, and have retrained their bodies to crave fresh, organic vegetables and fruits. Broccoli and blueberries, here I come.

4. Laughter truly is the best medicine.

Radical remission survivors consider smiling and laughing to be as important as flossing. They commit to feeling happy every day, even if just for 5 minutes. While they may experience days or weeks filled with fear and sadness, that doesn’t keep them from taking a daily, 5-minute YouTube break so that cuddling cats can get their oxytocin flowing again.

5. I should listen to my intuition.

Radical remission survivors listen to the voices in their heads that whisper, “Your job is killing you,” “Move your body,” or, “Look for other options.” These gut feelings come from the oldest parts of our brains – parts that we all have but rarely use, because we no longer need to predict hurricanes or know when a tiger is lurking. These natural instincts sense sources of danger and paths to safety long before the other parts of our brain even know what’s happening – so it’s worth at least listening to them.

Getting back into shape, swimming, running, and eating healthily again

6. Bodies need a spring-cleaning, too.

For better or worse, we live in a world that provides wonderful innovation along with lots and lots of chemicals. These chemicals wreak havoc on our bodies, including the immune system, which is in charge of noticing and removing. That’s why radical remission survivors choose to take a personalized regimen of vitamin and herbal supplements to get rid of toxins, absorb food better, and strengthen their immune systems.

Taking a lump of clay where I expected to be soon and leaving it behind as something beautiful was very spiritual and felt like I would live on in my pots,

7. I need to connect to something deeper – every day.

Radical remission survivors develop a spiritual connecting practice that they do every single day.

This could be meditation,visualization, prayer, affirmations, or simply napping in the sun. Whatever the method, they “recharge their batteries” (and their immune system) by stopping what they’re doing, quieting their thoughts, and sinking into a beautiful state of deep, soulful rest.

8. I see friendships and family as essential and healing.

Radical Remission survivors tell me all the time, “I don’t know how to explain it, but I know that the love I received from my friends and family helped me heal.” Well, guess what? Researchers know it, too. In study after study, loneliness has been associated with more illness and an earlier death, while feeling loved by friends, family, or even pets has been associated with less illness, quicker recovery times, and a longer lifespan.

9. I must follow my dreams.

This is a biggie. Radical remission survivors love life more than they fear death. Some of them aren’t afraid of death at all,

In my wildest dreams did I ever think I would play football agin; (Player of the week”)

believing that it will “happen when it’s meant to happen” – but until it happens, they try to pack in as much passion and purpose into their days as humanly possible. There’s nothing like a cancer diagnosis to get you thinking, “If I only had five years left to live, what would I do?”

10. Anything is possible.

Found my youth again and its great fun

When I’m sitting across from someone who was told they were going to die, and then I realise that that was over 10 years ago, a spark of awe flutters up my spine as I’m reminded, for the thousandth time, that anything is possible. In the words of one of the alternative healers I study, “you just need to keep changing until you come across the change that your body-mind-spirit was asking you to make.”

Based on the New York Times bestselling book Radical Remission.