‘Pain: From Chalkie’s demon diary’ – a contribution to our special edition collection of pain in the medical humanities, by Mike White
Last November I was travelling round Australia doing presentations and media interviews about arts in health and making big plans. I have been to Hell and back since then. When I, got home I started to lose mobility due to pain in my back and hips from a metastatic bone cancer diagnosed two years ago. Gradually my home has filled with aids and adaptations so it looks like a set from Thunderbirds.
In February, my consultant informed me it was all up with me on the cancer treatment front. I was told nothing had worked and I could not tolerate any more intervention. So I was to be referred on to palliative care to get me the best drugs to keep the bastard cancer quiet and assure quality of life in the time remaining. The bluntness of the 15 minute consultation shook me. A medical student and nurse were superfluously present and all of us stared into space once the hammered facts had stopped. It took my wife Catherine to say “I think we had better go” to break the choked inertia. We moved to a side room for a short spell of grieving but just wanting the strength to get out of there.
Yet only a few days later I was thrown a lifeline called Radium 223, a course of injections that would make my bum radioactive and kill the cancer cells in the bone. So I am now in the curious position of looking towards some life beyond treatment at the same time as doing a coda on my life through palliative care. I am also unsure if I would have been offered this medical wonder if I had not earlier e-mailed the consultant to ask if there was really no point in continuing with any treatment? The cynic in me suggests I provoked some second thoughts on the price and value of treating me, but I will settle for a dose of serendipity. Whatever, once again I have a treatment plan and a means of measuring hope.
Administering Radium 223 is a simple and even serene process delivered by a nurse who so deftly inserts a cannula in my arm it makes me believe she’s the vein whisperer. Also in the room is a woman who introduces herself to me as a physicist – so it seems I have been referred on to the nuclear world of quantum cancer, which is and is not. I can see the blessed serum passing into me at a cost of £4,000 a pop to the NHS, which is no wonder no-one shouted about it earlier. In fact, it has just come out of a contentious clinical trial and NICE approval – so I am at the cutting edge of quality of life and what the state will tolerate.
Radium hopefully deals with the big picture of my cancer, eliminates pain and buys me time, but I also have a panoply of ailments arising from a cocktail of prostate and bone cancers, osteoporosis, and lymphoedema. For example, I get this hot prickly pain in the base of my heel. It wakes me in the middle of the night like a bad conscience. It forces me out of bed but by the time I have made the slow descent to the kitchen the pain has scarpered leaving not even a note on the fridge door. So by then half-awake, I have the prospect of some small hours cable tv and its obsession with conspiracies and alien abductions. I believe I am halfway to Roswell already, resembling a sleep-deprived ‘grey’ with a large head on a small frame and staring black eyes. I have lost real time and feel like weird experiments have been conducted upon me.
With such surreal experience, my stock response to the cancer is incredulity. How did I get in this state but by default of misdiagnosis in 2012? It was supposed to be a hernia – one awaiting surgery, I was repeatedly told, when my liver readings had stabilised, though how a prostate specific antigen reading of 706 was missed is beyond my comprehension. When my GP told me he would expect a normal PSA reading to be 4-5, I said “you mean 4-500?”, he replied “no, 4-5, we had better get you tested again”. It only got worse when late on a Friday afternoon the phone rang at home. An unfamiliar doctor at the practice blurted out “I have your blood test results here. You have a tumour on your prostate and the cancer has spread into the hip bones. But it’s treatable. Now, have you any queries?” I stammered “N-no, not now” to the factuality, not the question…and that was my life-changer.
Two years on I am in no hurry to be anywhere. Only cancers and ships have a setting for ‘Dead Slow’, to prevent hitting icebergs or running aground. In the middle of the night, when possessed by foolish pain like that of the heel, the watchword is always ‘steady as you go’ to avoid collisions in the dark. Your senses change; touch and proprioception are to the fore and you are differently abled, even when it hurts. With most pain in this illness I can understand the origin but some pain feels like it was not meant for me; that it is a type that was ordered on 30 days free trial by someone else.
Nowadays, I sleep like a butterfly – pinned to the headboard, perfectly still, with ornamental wings on full display. On awakening, I add to a slug of morphine a few drops of night scent of Catherine, and then make the big manoeuvre, turning limbs sideways and heaving on the bedrail until I can make the few fumbling steps that start the day. Then it is to the pharmacy cupboard for painkillers, heart drugs, laxatives and anti-sickness pills, all washed down with fresh orange juice, Chalkie’s Sex On The Beach. Outside of cocktail hour, I am sad to say the morphine-based painkillers have ruined my taste for wine, so I am like a doomed epicurean.
My movements have become stiff and jerky, and the sum of my parts is like an artist’s wooden mannequin, posable but tense. In this condition I am pre-eminently aware of the quiet attention of others, what Wordsworth called those ‘little, nameless unremembered acts of kindness and of love’. If I were to name a few they would be Catherine helping me into bed at night, the woman on the Metro who gave up her seat for me, my chums Down Under making heart-felt offers of help. I feel at one with many, and not like the insect under the carpet.
The biggest change is that I feel I cannot adequately articulate in words, only in thoughts; hence “Chalkie’s Demon Diary”. I struggle with speech in ways I never used to, as if calling from the bottom of a well, confused by echoes and lost for certain words. I bumble to explain and memory is like a misted wind-shield on an autumn morning.
This guest contribution was written by Mike White, who was, until recently, the arts in health agent for The Centre for Medical Humanities. After 15 years at Durham University, however, he took early retirement in the autumn of 2014 due to advanced prostate cancer with metastatic spread to the hip bone. The ‘Demon Diary’ is comprised of occasional rants and reflections during the progress of his illness and a means of signing off from the arts in health field in which he has worked for nigh on thirty years from ploughboy to scarecrow. He once wrote a book about it all called Arts Development in Community Health: a social tonic (2009).