Living with(out) cancer #1

There is a very fine line between not giving cancer any solidity and denial.

The objective existence of the disease is surely beyond doubt. There are more than two hundred different kinds of cellular pathology characterised by unregulated division and mutation, each of which affects a body differently, depending on the sort and location of the cells, their malignancy and agressivity. These processes are well documented, they are the common element of the disease called cancer; not giving them any solidity would seem then to be denying the existence of reality.

For slightly more than a year I have been medication free. I have also been medical knowledge free.

I made the decision to live like this before I met the Lama who suggested I never give the disease any solidity, and yet it seems now to have been the first step on the journey towards understanding what this actually means.

At the time, I wanted only to be free of the side effects of the medication, and no longer to find myself in any position from which it would be possible to react against the determinism of medical knowledge. Clinical oncology had taken me to a point of almost absolute absurdity, where the side effects of the medication were much worse than any symptoms of the disease, where despite the cancer becoming now resistant to two different medications, the next stage of treatment was a combination of these, plus another with even worse side effects, to which the disease would also quickly become resistant. My decision was more a reaction against the contradictions of clinical logic than any motivation not to give cancer any solidity.

I returned to a familiar place. The place from which I began this journey – kind of dietary mindfulness. No more food product, diary produce, refined carbohydrates, sugar, coffee, alcohol, red meat. Only fresh fruit and vegetables, oats, certain nuts and honeys, a little fish and eggs. Lots of almonds, broccoli, kale, avocados, lemons, and assorted dietary supplements in rotation. Into this I added a commitment to Buddhist mind training and meditation. I had the love and trust of family and friends, but I was anxious and still very angry both with the disease itself and with the only ways these societies appeared to be allowed to treat it.

By any standards, 2017 was the most amazing and wonderful year of my life.

Apart from getting married to my best friend and the love of my life ….

…. I climbed 54 separate Munros and widened my experience of the vast landscape that is hidden away in this country beyond the road ends, car parks and tourist destinations. I clambered along the Anoach Eagach, completed the Loch Trieg circuit, bagged the High Laggans and five of the South Cluanie Ridge, took a three hundred mile, seven hour round trip to climb Spidean Mialach and Gleouraich during the rut, discovered the mighty Ben Cruachan, went up Breariach for the fifth time, camped on the Great Moss in a blizzard, completed everything east of Glen Shee, went on holiday in a camper van with my lovely wife to the Uists and Barra, to name but a few of the high points.

…. In May I attended public teachings given by His Holiness the Karmapa in London. As I have mentioned, I have visited a Scottish Lama several times for counsel. In September I spent a week with him on meditation retreat on the Holy Island in Lamlash Bay by Arran at the Centre for World Peace and Health. During the year I had a number of what might loosely be called spiritual experiences in the mountains and I have always taken my journeys into the hills, no matter how obsessively motivated by ticking boxes, as opportunity for meditation, reflection and mind training. In the wake of the retreat on Holy Island I was confronted by my most unpleasant demons, the most inaccessible emotions and hateful resentments that in many ways are the cancer …. and which I seem at last to have put to rest upon writing it all out in Dutch.

…. Before all this, during the first months of the year, I introduced an additional element to my healing process. A plant extract with a reputation for miracle cures which seems to operate by rebooting a body’s immune system. Unfortunately this oil is illegal and not freely available. With the help of donors to a crowdfunding page, I was able nevertheless to obtain enough of this substance and thereby to supplement my other efforts. At the start of the year I felt ill and I was in a very dark place, I could discern something nasty in my chest, near where scans had identified an enlarged lymph node, I awoke every morning with a sickly feeling. To an extent I was still working through the side effects of the medication, but I could feel the disease gnawing away inside. At the end of the year, these feelings were gone.

I started writing this post before I climbed Carn a Chlamain and before I met with my oncologist. At this point in the story I was going to write about my private experience with doctors and senior health professionals, who will tell me informally that they support what I am doing; that diet, exercise and mindfulness are absolutely crucial to health. Some perhaps are conscious of the old tension within their profession, between physicians who always need to find something that works, that will alleviate immediate suffering and assuage the worst symptoms of disease and infection, and physiologists who believe it is irresponsible to treat a disease, infection or condition unless there is a firmly established understanding of its natural progression, of how nature herself treats it. I wanted to reflect upon this difference in relation to differences between the private and public roles of doctors, between professional ethics and institutional inertia, and the usual complicity of pharmaceutical companies with insurance capital and state welfare systems.

As I drove towards Blair Atholl on Sunday Morning, I wondered about the day when a doctor will say to patients – professionally, not informally – with all kinds of diseases, ailments or complaints: go home, sleep well, start every day with a period of meditation and reflection, eat a simple diet of fresh fruit and vegetables with occasional fish or eggs, avoid stress, sugar, dairy, mass produced snacks, highly refined carbohydrates, alcohol, coffee and tobacco, take regular vigorous exercise and find some sort of occupation from which you benefit as a human being. Be kind to others.

I arrived in time for my appointment at the cancer centre. The waiting room was full of elderly chaps, many of whom with clear signs of advancing disease, accompanied by their assorted womenfolk. There was a slight odour of urine. I waited patiently for a bit less than an hour before being called forward. My oncologist introduced me to a new registrar who had just joined the team and who would today be observing. I told them that I felt their time would be better spent with the other chaps than with me, for I certainly did not feel at all ill, having the previous day climbed a mountain in the snow. My oncologist shrugged, indicating that I was his patient too, and began to talk about my PSA. I immediately reminded him that I did not want to know. He then checked whether I was on medication, and I reiterated that for slightly more than a year I have been both medication free and medical knowledge free.

His attitude changed almost imperceptibly as I proceeded upon a summary of what a wonderful year I have had, about the explicitly Buddhist elements of my journey, my dietary mindfulness and of getting married to the love of my life. He asked if I had thought about repeating the medication intermittently in the future; I said that this was always at the back of my mind, but for the moment unnecessary. He inquired about how I felt; I told him that sometimes I was aware of stuff in my pelvic region, but that this was something I had in mind rather than something that concerned me, and that any symptoms I experience are as variable as they always have been. Apart from bruising a rib the previous day when I fell over in the snow, trapping my Mala between chest and upper arm, I felt generally better now than this time last year.

He told me that I am doing amazingly well, that I should carry on doing exactly what I am doing and that he would see me again in six months.

I am still allowing this to sink in.

He told me that I am doing amazingly well, that I should carry on doing exactly what I am doing and that he would see me again in six months.

It is what I imagined on the road to Blair Atholl a doctor should say to a patient with any kind of disease. Not exactly explicit, but the message is clear: do not bother with medication, eat well, sleep well, bring your mind to rest.

He told me that I am doing amazingly well, that I should carry on doing exactly what I am doing and that he would see me again in six months.

It is still sinking in.

And so I find myself in a place I never thought I would be. Hearing words from a doctor I never thought I would hear. Writing words I never thought I would write. Being alive long after I thought I would be dead. Knowing now exactly what it means to be living with(out) cancer. Never giving it any solidity.

Thanks to His Holiness Lama Yeshe Rinpoche and His Holiness the 17th Karmapa for wisdom and inspiration. To my wife, friends and family and everybody who supported my crowdfunding page. To Dr McLaren and all the staff at the Edinburgh Cancer Centre. To all those whose conversations have enabled me to gather together these words.

In a little less than a month I begin a new job on a local organic farm. I do not know how long I have left in this life, but I intend to enjoy every last moment.