The first victim

The first victim of cancer is the future.

It is now almost five years since I was diagnosed with stage three locally advanced prostate cancer and told that I would likely live no more than a year if did not take the medication and only three even if I did.

I had a life in The Netherlands. I was the owner of this bicycle shop and joint owner of this bicycle messenger company. I spoke fluent Dutch, I did my own tax-returns, I participated in hard core cycling events, I traveled the world, and I rose to the challenges life presented. But I could feel that there was something not right inside, so I sought medical advice.

Then everything changed. I was confronted simultaneously by the power of medical determinism and my own mortality.

Before you know you have a terminal illness, you do not really think about your own mortality. You just blunder along with life, trying as best you can to make sense of it all and keep your head above water. You are of course always aware that one day you will die, if not when, and that you will in the meantime be able to make long term plans. You assume you have a future that you can fill with hopes, dreams and aspirations, as well as plans and projects, but you actually have no idea whatsoever what this thing is. This future into which you are moving seems to be as natural and taken for granted as being alive.

After you know you have a terminal illness, you think quite a lot about your life coming to an end. But you still blunder along, trying to make sense of it all as best you can and keeping your head above water. Your awareness of your mortality is sharpened, but you still do not know when you are going to die. You are suddenly forced to confront this thing called the future in a new way, to examine it very carefully and to fill it only with stuff that is really important, because you know it is limited.

For a moment you understand exactly what the future is in a way you never really thought about before your were diagnosed with a terminal disease, and then it disappears. It becomes easier, less stressful, to live entirely in the present.

According to the logic of the medics who first told me how short my future was going to be, every moment of my new existence would be another step towards the inevitable. There is a well documented progression and lots of data from which to draw conclusions. It does not matter what efforts I make, the disease will kill me. My diet and lifestyle are irrelevant. My rigorous mental discipline is futile. All the clever arguments I can muster in criticism of either the knowledge and methods of medical science are pure sophistry.

I look back sometimes now at the efforts I made all those years ago to prove the medics wrong, and to kick against their determinism, with a kind of fatherly admiration, but with a wince of embarrassment at my naivety. For obviously this was just another way of trying to deny the reality of my condition, and during the intervening years I have had this determinism confirmed.

When I left The Netherlands, I was taking a drug based on a female hormone analogue designed to slot into testosterone receptors in prostate cells and switch them off, and which fooled my body into believing it was an adolescent girl going through puberty. The experience of breast development allowed me to form bonds with my female friends that had hitherto not been possible. When I arrived in Scotland this drug stopped working, and I was given another one which works deep inside the brain to switch off the processes of hormone production, thereby starving prostate cells of the testosterone they need to function and convincing my body that it was a fifty something woman going through the menopause. The experience of hot flushes, crippling inexplicable mood swings, depression and fatigue, not to mention destruction of libido, sexuality and motivation more generally has enabled me to understand more sympathetically the suffering faced silently every day by many women of my generation. While on this medication I was also given a course of high dose radiotherapy which left me doubly incontinent for about a week and in need of always being in close proximity to a lavatory for about two months. After a couple of years of taking the medication for six months and letting my body cleanse itself for six, this medication stopped working too.

So they were right. My disease is indeed following the expected path – perhaps a little more slowly than expected, but nonetheless inexorably following its predicted course. The future that I do not have is becoming even more precious and terrifying. And yet, living now beyond the edge – so to speak – in a place beyond the expected trajectory, I can look back at the last five years and see that throughout, there was always before me a future. For here I am, self evidently here and now, still alive, having lived through a period of time to get here, having experienced the deterministic logic of medical science from the inside at the same time as always believing there is more in this world than allowed for by its Cartesian metaphysics. So I must be doing something. Maybe I do have a future. Dare I even think this?

There is now another place in the mountains where I will henceforth always be able to return. The bealach to the west of Sgur na Lapaich will always be where I go to find the strength to carry on in the present. After last week, I will always be able to return to the place where I saw for the first time in nearly five years that I have a future. It lies at the meeting of two burns: one coming down the glen between Chno Dearg and Beinn na Lap, the other coming out of the southern corrie of Chno Dearg.

I sat here eating lunch, reflecting on the journey and had a moment of revelation that I do not yet know how to describe, but which infuses me with a vitality it is difficult to contain. There, I was able to think for the first time about the future and to make decisions that will bring about favourable events, rather than to sit around waiting for the inevitable to work out its course. As I sat I felt a definite shift and could see that it was a sensible decision that connected with many other matters of importance in my life.

I feel truly blessed to be alive, not because I believe that the grace of God is shining down upon me – although it may well be, but because at this place I see just how extraordinary any of this is, that this precarious existence humanity thinks it has secured for itself on the surface of this planet is a most unlikely, marginal happenstance within an infinite creation, beyond every power of comprehension. The mountains before me smile in the summer sun. Tall grasses swoosh in the wind and water gurgles over rocks.

I come upon myself thinking this and of the fact of thinking this and I am pulled into a reflexive spiral from which I am able to escape only by believing either that all these thoughts have been put in my mind by forces beyond my understanding, or that I have just made it all up inside the echo-chamber of a wandering consciousness. At which point I grasp that either alternative is as miraculous and bewildering as the other and I am left again to focus on the present, on smiling mountains, strangely inoffensive midges, the enormous variety of grasses scattered with delicate flowers and decorating every nook and cranny between the rocks.

There is nothing here. The waters of the burn move on again and I am overcome by an emotion I do not understand, but which sounds a bit like this. It is on the radio as I am driving home, in a transcription for electric guitar recorded in Anstruther during the East Neuk Festival. Later, I sought out a recording of the original, scored for nine pipers – its layering of sounds, note-bending and joyous dissonances, and the transitions, first to piobaireachd, and then to jig perfectly mirror the cascades of emotions and ideas I experienced here. Except that the pipers stretch out to ten minutes or so the expression of an experience that took place between moments in the absolute infinity of void.

Nothing like a bit of avant garde piping to hit the spot.

Love and peace.