Can-can Cancer Dancer 7 — Living Paradoxes

Bored?

“Are you bored?” he asked. I was sitting quietly reflecting, after breakfast and was startled by the question.

“Why should I be bored?”

“Well, you know, all this time you’ve not been able to do very much.” True, but I was never bored. I cannot remember the last time I was significantly bored. Yes, sometimes I had been bored with a film I was watching or with a particular conversation, but generally bored? No. I don’t get bored. Chemotherapy, for example, is far from boring; it’s exciting — unpleasant, I grant you; sometimes wearing, but never boring. Although I had wearied of it a little towards the end — I confess — I had cast off my weariness quickly.

I would wish them upon no one, but the treatments I had received had opened up new experience to me in many ways, thereby enriching my life.

beethovenMost unforeseen, perhaps, was a much deeper appreciation of Beethoven’s late string quartets. Often, while undergoing chemo, I had very little energy for anything and I lay for hours listening to music. I was living a paradox, simultaneously experiencing the travails of an ailing body, like a swan grounded by a broken wing while yet being uplifted by the most sublime music, a vulture riding a thermal to the heavens and beyond.

I listened to the quartets countless times, their strains seeping into me, penetrating further and further. Perhaps not so surprising; they were Beethoven’s swansong. There seems to be a profound poignancy suffusing the slower movements, especially his ‘song of thanksgiving to the Divinity’ [upon recovery from serious illness]. Did I feel a spiritual kinship with the genius of the music, a solidarity with its source?

Carcinoma

Cancer had first entered my life quite innocently as a basal cell carcinoma on my arm — a wart that had slowly increased in size then turned bad and bled constantly. It had been diagnosed in Nagpur, in India, and was surgically removed in Pune. It had deeply alarmed me at the time — so much so that I’m amused at myself in retrospect. Nonetheless, it was one more encounter that had helped to prepare me for what subsequently happened, further enabling me to see through the absurdity of my reaction, honing my capacity to respond equanimously to something truly life-threatening.

The carcinoma recurred and required further treatment shortly after it had been removed. Having had one, there is a fifty percent chance I will have more. Consequently, a few weeks after my final radiotherapy session I had to return to see my dermatologist for a routine check.

“It looks beautiful to me,” she said, referring to the long, smooth surgical scar on my arm, now no longer blemished by cancer cells. At last it had gone.

“Hospitals seem to be becoming my home from home,” I said.

“Well that’s not good, is it?”

I shook my head. “Could I be discharged, please?”

She agreed. “If anything recurs, let your GP know and we’ll see you within two weeks.”

The NHS is truly wonderful.

Lymphatic reaction

Excessive optimism frequently leads me into trouble. Ten days after being utterly dependent on a wheelchair, I sent it packing. And that was just three days after being stranded a few hundred metres from the LBC without the energy to walk back. Muditasri had had to return for my wheelchair. Even so, I was already back in the pool training, as I had enough energy to walk there and back.

“It got into my lymphatic system,” I was explaining to a fellow swimmer and could proceed no further as his reaction was instantaneous.

“Oh, I know what that means!” he said with an involuntary shudder, triggering a shiver in my mind, his eyes shrinking back with fear. The power of words is truly extraordinary. By now I was impervious to such reactions and the echoes they sound within my mind. He had asked how I was and I had told him. I had been urging him, ever since I had been diagnosed, to get a PSA test, as he was clearly at risk.

“You don’t want to end up like me,” I said firmly, smiling encouragement. That finally seemed to galvanise him.

“Well, maybe I will.” Later he thanked me for nagging him. His GP arranged an early hospital appointment after they got the results. I haven’t seen him since.

It’s always raining…

And of course, I was back on my bike. I should have read the signs. I was getting cocky. One day I cycled seven miles; the following day I swam nine hundred metres; on the third day I did the same, swimming harder — and walked over ten thousand steps, according to my fitness tracker. On the fourth day when I got out of bed I could hardly stand.

That was problematic. I had to get a train late that afternoon to Manchester to participate in the stone-setting ceremony for Dayanatha’s late father and I was determined to go.

I travelled to Euston station by the underground, helped by Prajnamanas. The following day, Sunday, was cold, windy and wet — Manchester! But that was not why it was tough. Although everyone else was standing in the packed chapel at the cemetery, I sat at one side throughout the service as standing taxes me even more than walking.

When the rabbi had finished, Dayanatha spoke movingly about his father then afterwards I stood with Prajnamanas by the door, leaning against the wall to take some of the weight off my feet, holding a box with stones for people to take and put on top of the gravestone. Amused to think it très cardinalesque, I had chosen a scarlet kippa, but it sat precariously upon my head and I was now anxious lest it might take flight with the gusting wind. I did not remove it as I was uncertain of the protocol and did not wish to risk offence.

“Thank you so much for coming,” Dayanatha’s elderly grandmother said to me as she came out. His mother expressed the same sentiments. Their warmth took the chill out of the wind and I was glad that I had come, despite having to stand for the ceremony at the graveside on tremulous limbs and despite my frantic attempts to secure my flighty kippa.

The following day I had an acupuncture appointment. “I think I might have overdone it a little,” I confessed as I shambled through the door. Joanna laughed then later admonished me. I must conserve my energy at least until the new year, she insisted.

I had never seriously considered that I would need to convalesce. I am not used to being ill and because the cancer itself had caused me no pain, it was difficult to believe that my body was diseased. I did not disbelieve that I had a tumour, but I had never seen or felt it. I had taken my diagnosis on trust and had therefore consented to treatment. Experientially, however, I was recovering from the therapies, not cancer, and it was difficult for me to grasp that that warranted convalescence. But, at last, I understood… I think.

But the enervation was not just physical. With the onset of chemo, I had stopped meditating because the mental fatigue was so extreme. I had hoped to pick up my daily practice when it was over, but my lethargy continued throughout radiotherapy, albeit less severely. For seven months I had not meditated and yet, oddly, my mental acuity was as sharp as ever and my emotional positivity sustained itself throughout. This would have been impossible without forty-five years of continuous Dharma practice (including daily meditation) behind me, but, even so, I did not wish to become complacent and was eager to re-establish my routine. In the weeks following my treatment I gradually succeeded.

Remission

Six weeks had passed since I had finished radiotherapy and I had returned to the hospital for yet another encounter with a phlebotomist.

Two days later came my final consultation. Thereafter I would only return for six-monthly reviews preceded by a blood test.

“How are you?” my consultant asked.

I’m always very well,” I replied, “it’s this wretched body that’s the problem.” Indeed; still, I really ought to resist this stale joke which I have used far too often… but it is so tempting; it usually provokes a chuckle — as it did on this occasion. “I really need a new one,” I continued, “Not that I intend to do anything about that, by the way,” I hastily added.

“I’m relieved to see you out of that wheelchair,” she said, trying to get serious, “I was very worried about that. Had you turned up in one this time I would have had to give you something that would have made you really sick.”

“You’ve already done that,” I quipped.

No more nonsense — to business.

“Your blood results were excellent. Your PSA is down to 0.003. That’s an extremely good result at this stage,” she said with typical enthusiasm when communicating something positive. A quick mental calculation: it had been roughly 15,000 times more than that when I began.

“Is that the hormone therapy?”

“No. Radiotherapy. The last time we tested it, it was 1.42 when you were still on chemo. It was forty-three before you started treatment.”

“Forty-six, according to my GP,” I insisted, not wanting to be cheated by one iota of the seriousness of my diagnosis — there’s status in this. Another quick calculation: 1.42 is approximately 473 times more than my current level — a further huge shift. “So, if I’m asked, for legal purposes, ‘Do you have cancer?’, what is the most truthful answer?”

“For insurance, ‘Yes’.”

“What’s my actual status?”

“You’re in remission.”

“What does that mean?

“There’s no evidence of cancer present anywhere in your body at the moment.”

So, I have been given a reprieve until my first review, six months hence. I must live my life in biannual cycles, never forgetting those last three words — at the moment — mindful that I may be living merely on borrowed time and that the cancer might already have returned even when her words were spoken. It can recur very quickly.

My life remains on the line, as it had been for the past year when I was first diagnosed, yet I forget so quickly and easily like a man on death row who cannot believe his executioner will ever call.

“Don’t you ever wake up scared in the middle of the night?” one of my friends had asked. Never. The thought of cancer does not disturb my dreams any more than my waking life. It used to scare me before afflicting me; now that it threatens my life, it no long does — how perverse — it’s simply the reality I face. I’m no more or less conscious of it than I am of the sun when it shines. It is only at relatively rare moments, usually in conversation, that I’m conscious of cancer — and then only fleetingly, mostly free from disquiet. Then begins the struggle to overcome my wilful ignorance, to seize the moment of awareness, daring to stand on the edge and look down, perhaps to soar above the abyss.

Possibly I lack imagination — how could I not be afraid of it? I cannot answer my own question. Probably I should be shot through with shivers of fear — it’s a terrible, painful disease — but I am not. What I fear most is dying with a mind deadened by morphine with its concomitant confusion. I am determined to greet the Grim Reaper with a bright mind and will take any steps necessary to ensure that I do.

“Are there any other lingering side effects from the radiotherapy?” my consultant continued. I could think of none, other than the fatigue, having forgotten, in the moment, my chronically dry left eye. But what about my bones?

“There’s a slight thinning; you don’t have osteoporosis, but osteopenia which can lead to it. It’s too early for the hormone therapy to have caused that.” She prescribed calcium and vitamin D. “You may be able to come off the hormone therapy after two years instead of three.” These were soothing words to one whose manly breast was under threat. “I’ll let you know when we have the results of the latest studies.” May the gods preserve my chest — a perfect plateau blighted by neither hill nor dale.

“I still have neuropathy in my hands and feet.”

“That may take between eighteen months and two years to clear. Chemo destroys the nerve endings; they take a while to grow back.” She paused before continuing. “You may not see me the next time you come,” she explained. “The nurses may be taking over the reviews of patients in remission — a change I’m trying to resist, but I may not be able to do so much longer.”

“Well, I hope I do see you,” I said with feeling, saddened by her disclosure, “I’m very grateful for everything you’ve done for me.” When you have a good rapport with a doctor you want that relationship to continue. Though we had had our differences over acupuncture, it had been evident from our first meeting that she took a genuine interest in her patients — certainly, she did so with me. I had felt immediately at ease with her bright, lively personality and had always found her warm, sympathetic, good-humoured — and candid when necessary.

Suddenly I was conscious that I had no gift for her. I had wanted to give her something at the end of radiotherapy — but what? The chocolates I had given to my radiographers and the receptionists would be hopelessly inadequate given how indebted I felt.

How do you adequately thank someone who may have saved your life? In context, that may sound overblown. Had she not simply done her job, for which she is well-paid? Perhaps. But there is a human dimension which can easily be overlooked and undervalued. We had a positive and effective relationship characterised by the trust that should arise naturally between doctors and patients, but which often does not. I imagine that mental attitudes on both sides of the clinical divide might have a bearing on the outcome of treatment.

Even if this thing finally kills me — even were it to do so relatively quickly — I’m sure that I shall continue to feel greatly indebted to her, grateful at least for the stay of execution she has given me from the ravages of cancer; grateful for prolonging my much-valued opportunity to give of my experience to those who esteem it. I had been fortunate, but I did not know how to express this upsurge of gratitude appropriately — until fortune intervened.

Sir Antony

Antony Gormley came to the LBC to be interviewed by Maitreyabandhu as part of his Poetry East programme. As usual, it was a wonderful evening. Who else other than Maitreyabandhu could have pulled it off? I sat next to his fellow poet and poetry mentor, Mimi Khalvati. “I don’t know how he does it,” she said. “His preparation is so thorough. There’s nothing else like this on the literary scene. What he does is unique.”

UnknownAntony Gormley is a sculptor, of course, not a poet; and he’s almost a Buddhist. Afterwards he signed books including the Phaidon book on his work. “Could you dedicate this to ‘Angela’?” I asked. He readily agreed.

During the interview, he had spoken very warmly about the north-east of England — it’s culture, landscape and people — even mentioning my home town.

“By the way, I was born in Middlesbrough just after the war,” I said, after he had signed the book. His face lit up. “My father was a fitter in the shipyards.”

I might have been an old and cherished friend given the warmth with which he put his arm around me. (What a shameless fraud I am, given my ambivalence to my birthplace.) He was evidently about to launch eagerly into some discourse about the north-east, which, sadly, I had to check, as there was a long queue of people behind me awaiting his signature. Nonetheless, I now had the perfect gift.

Two days later, I left the book at the hospital with a card and a letter of appreciation. Both the book and my words were warmly received.

Now that I was evidently looking well, several people told me how dreadful I had looked, especially towards the end of my treatment. One of my friends had even thought that I was not going to survive it, though I never felt as bad as others seemed to have perceived me.

It is easy for me to forget that the precarious state of my health affects not just me, but also my friends, one of whom told me he felt sad that he might lose me. I was very touched. Yet he might not — at least not from the cancer. I’m in such a paradoxical position. I might be completely cured — or dead from the cancer in a year or two. If I am cured I am unlikely ever to know, but I will certainly know, eventually, if I am not. Damocles sword will dangle above my head by an ever-fraying thread for my remaining days, but, should I look up, which most of us rarely do, would I see anything other than a harmless spider?

But there is a deeper paradox. Before cancer I was happy. During diagnosis and treatment, I was no less so and remain so, despite the greater uncertainty of my life and the discomforts and inconveniences cancer has brought. Indeed, I am probably happier than I have ever been. I was teaching regularly again, having just begun a six-week introductory course on Buddhism and meditation. Nothing makes me happier than communicating the Dharma.

Falling leaves and failing legs

Then came another test — my legs were getting weaker, even though I had neither been swimming nor cycling for weeks — and despite walking much less than during the early weeks of my recovery. It was a conundrum.

I had been to Birmingham to see my dentist, Jayabodhi, but the effort had cost me dear. Then for three days I had rested my legs, yet their strength seemed to be ebbing. What did they need — exercise or rest? I opted for the former and asked Gus to accompany me on a walk, lest I get stranded.

We reached the park, but I couldn’t go much further, so we paused by the bridge over the canal and I eased my weight against the parapet, luxuriating in the mildness of this late November day. The light was all but horizontal, catching the lingering yellow on the trees, alchemizing it into purest gold; the most poignant moment in autumn — and my most precious — the last few leaves clinging with but the slightest grip to their life-source, hanging on to face their fate — a gentle fall to earth, or a taunting flight heavenwards, that they might then be cast down like fallen angels; a choice not theirs to make.

“Here, look through these,” Gus said, handing me his tinted shades, and the subtlest gold was transmuted into brilliant copper; spectacular, but gaudy, counter-alchemical.

I needed advice and so I called a prostate cancer nurse. “It’s not just the radiotherapy that’s caused the fatigue,” she insisted. Chemo and hormone therapy were also culpable. The latter blocks the production of testosterone which is important in helping to maintain muscle mass.

“The fatigue could continue as long as you are on hormone therapy,” she warned. What a wonderful exercise in patience that might be! Fourteen more months, with possibly an additional twelve, on shivering shanks! “But it could also clear up within two months. There’s no predictable pattern,” she added reassuringly.

“So, what can I do?”

“Learn to manage it.” Is not that what I had been trying to do? “It’s a matter of trial and error.” But I had had many trials and had made as many errors. “If you do too much one day, you will simply have less energy the next. You can’t damage anything.” But it’s a double bind, if I do too much, I fatigue my legs and if I get insufficient weight-bearing exercise, such as walking, I will lose more muscle mass, which will compound the fatigue.

I rested for two more days until, at last, my insatiable appetite drove me to the park to savour again its autumnal beauty. Although the overnight gale had diminished, countless fallen leaves were yet restless on whatever beds they had found.

P1000782

The trees that had moved me so much a few days earlier were now bare, their glory surrendered, like reluctant Richard’s crown, to an implacable force. By the time I returned to the LBC, I doubted my legs could keep me upright, they seemed so ready to give way.

And then the beast slunk heavily into my mind — Doubt. Will my energy return? Why had I been tricked by its revival then mocked by its wane? Will I permanently lose the use of my legs? Irrational, of course.

I reminded myself that my energy would recover by morning. But what if it did not? If this was just the beginning of a steady decline, what would I do? And would it really matter? I could still hear Mitsuko Uchida play Schubert, though perhaps not in concert as I hoped to do the following week. I would continue to write and would write more. I could still meet people and lead a fulfilling life — it would not stop me teaching.

The girl and the eagle

As these and similar thoughts drifted through my mind, my attention was drawn to a girl, of perhaps nine or ten, in school uniform. It was now dark and, during an idle moment, I watched her from our bathroom, two stories above the street, as she mimicked a pole dancer in the café opposite. She was dancing in a floor-length window — revealed and obscured by its broken condensation — empty tables and chairs extending behind her; her mother at one side, consumed by her food, oblivious to the dance. I was its sole spectator, touched by the girl’s innocence, amused by her precocious talent, struck by this supposedly enticing routine robbed of its sensuality.

It might have been the following morning; I was in a ruined abbey on the edge of a major city when a large eagle landed on the remnants of a wall a few metres away. A distinctive white collar highlighted its dark brown plumage, the latter mismatched with its scuffed, and decidedly lighter-toned, shoes, several sizes too big for its feet. I’m a great lover of nature, but, frankly, it looked ridiculous. Had the shoes been of the right size and coordinated with its feathers, possibly I would have thought less harshly of its appearance, but when it turned its diminutive anthropoid face to look at me, there was no chance.

Why had this regal creature been reduced to this absurdity, its penetrating eyes dead as buttons, it’s fearsome bill broken off, its offensive talons tamed… or had some hideous deformity displaced them? I stared back uncomprehendingly until I awakened.

It was the first dream I had remembered for a very long time. My sleep had been excessively fitful for months, so when I had at last sunk into the profoundest slumber this mockery on stolen wings had stolen in.

What goes down must come up

When I began cancer treatment I had been relieved of community chores — washing-up, cooking and cleaning — everything. My community was happy to do these things for me and I was very grateful. Nonetheless, I still wanted to contribute. Consequently, I continued to buy our fruit thrice weekly from a nearby market stall, as it was relatively easy for me to do this with a trolley bag. On returning, I would leave the bag downstairs for others to bring up; sometimes, however, I would do so myself — perhaps unwisely.

One day, I was half-way up the stairs dragging a large bag of bananas, pushing myself up backwards with my arms, when one of my community members caught me. He paused, regarding this laughable sight with both concern and amusement.

“Where there’s a will there’s a way”, he said drily, yet slightly accusingly (I thought), as if I was a recidivist apprehended in some nefarious activity yet again.

(“Honest, Guv, I’d never do this in public. No! Not even on the underground.” I know others find me eccentric, but I do retain some sense of dignity.) He kindly relieved me of my swag.

“I can actually climb the stairs,” I said, somewhat weakly, “I’m just trying to conserve my energy.” Was he convinced? More pertinently, was I?

I must do something about my legs. Joanna had recommended chi kung and so I took it up again together with a simple exercise for developing muscle mass. A week later my strength began to return, enabling me to hear Mitsuko play three sonatas by Schubert at the Festival Hall.

She strode briskly to the piano in her golden shoes then after a cursory bow, without pause, the opening chords resounded dramatically around the hall. It was a golden evening, not because of her meticulously coordinated attire or the light that bathed her, nor yet her natural grace — nor even the humility that ennobles the truly gifted. The final piece (D850), played with a sublime touch, utterly transported me. Perhaps my sensibilities, heightened by recent experience, were elevated still further by music born of the imagination of one who — though yet young — knew he was fatally ill.

I felt grateful that I was not a musician, especially not a highly accomplished one like her. Immersing myself day after day in such exalted music, as she does, might have deafened me to the song of impermanence now singing constantly in my ear.

Another man from the LBC had just died of prostate cancer — the second in three months. A few weeks earlier the cancer of an old friend, with the same diagnosis as mine, had recurred. I had been expecting to co-lead a study group commencing in the new year, but this had now been allocated to two other Order members lest I should die before completing the four-year course. But most significantly, December 25th was just three weeks away. Should I awaken on Christmas day, I would have lived longer than my father. I half expected not to do so.

Spinning

I sometimes feel as if consciousness is seeking a divorce from the body (on grounds, perhaps, of physical cruelty). It’s a pleasing sensation, but probably it is simply a misperception of fatigue. My physical fatigue was obvious to anybody, but its mental counterpart still affected me, perhaps more than I cared to admit.

But maybe it is the other way around — that this body wants rid of its troublesome spirit, hence the mad spinning in my head, as if my whole body was in an ever more furious whirl like an Olympic athlete desperate to cast his hammer beyond silver.

And its slimy trick; the accompanying nausea — when it is that severe, you just want to die at once. My usual response was to pass out, leaving this body well behind — seemingly released into another universe — only to awaken in its vomit, as I had done on several occasions in India.

But there was a new carpet and it span at a pace well beyond my madly turning brain. It was a new carpet; I mustn’t. I stood up, staggered toward the door, reeled through another, fumbled along a darkened corridor, slid against its wall, stumbled down steps and hung my head over the bath — not in shame, but relief.

Had I remembered, I would have had my bucket by me, but I had dispensed with it, thinking it would be no longer needed after finishing radiotherapy (which I wrongly imagined had caused the dizziness) but it had continued and gradually intensified for weeks after. Then I recalled that this dreadful swirling had overwhelmed my brain two years previously, before cancer had slipped surreptitiously into my life.

I had completely forgotten about benign paroxysmal positional vertigo. Surely, I could be forgiven; the name itself trips your tongue, spins your head and forbids remembrance. Finally, I had recognised it, and again began the contorted exercises necessary to cure it.

“Your pulses are quite deficient,” Joanna had said and so the following week I asked her,

“Am I about to fall off my perch, do you think?”

“No, it’s just the effect of the [cancer] treatments you’ve had. Your body needs time to recover.” She paused before adding, “You do realise that this has aged you.”

Age had stared back at me from a mirror, months before, but she was the first to say it and I was grateful. The final vestiges of my prime were being drawn from my blood, eroded from my face and sapped from my limbs.

“I had noticed,” I said, but her words highlighted its reality. No matter how youthful I might feel inwardly, my body was visibly decaying; paradox and conflict. The spirit trapped inside this physical wreck was in rebellion.

The following day my legs were so weak I could hardly walk again. The culprit was not acupuncture, but a cold; for three days, at its height, I struggled up the thirty-seven stairs to my room then a further treatment restored more vitality — but not for long.

Still, I had now completed the six-week Dharma course and a few days later I travelled, unaided, to Adhisthana for the LBC winter retreat.

Surely?

The following day, I met Bhante. We talked mostly about writing — his, mine and Henry Miller’s whom he had been re-reading. He had read my cancer pieces and had found them funny yet horrific. Though I had exploited my humour, I had not intended to horrify and was startled at the thought that he and others experienced my words in this way.

Why had he returned to Miller, whose writing he considered to be of mixed quality? He cited, as an example, Miller’s poignant account of a clergyman helping his father to deal with alcoholism. Discussing literature with him brought back countless memories of the times we had lived together, but then a loud knock on the door told me it was time to go.

“I hope we’ll meet again,” I said, grasping his hand as I was about to leave.

“Surely, we will,” he responded, smiling. Surely? How ‘surely’, I wondered, as conscious of his mortality as of mine.

I headed for the door, but then turned back. “Hopefully, not surely,” I said. He had not heard and so I repeated my words, increasing their volume. Now he understood and smiled, though I forget what he said.

Two days later, I awakened, conscious that it was Christmas day.

 

Any names in this blog attributed to patients or hospital staff are fictitious.

Advertisements

Can-can Cancer Dancer 1 — Diagnosis

32844609545_5d40550c64_o copy 2

When I first saw it, my mind went straight to Keats — “… that drop of blood is my death warrant — I must die.” He had spat it from his lungs, but my blood had gushed out at the head of my urine. There was no mistaking it any longer; that slightly muddy colour, which for weeks had escaped at the beginning whenever I passed water, was merely the harbinger of this vermilion rush

I must have a kidney stone; I dared not think beyond my first assumption. The doctor was doubtful, but I was tested anyway. Negative. I reluctantly returned. Bladder or prostate, she insisted and I was tested for the latter. My PSA (prostate-specific antigen) level was 46. Anything above 4 — even only by half a point — was considered high. She manually examined my prostate gland and found a large, hard abnormality. She would refer me for ‘suspected’ prostate cancer, she said, but her manner and tone told me at once that she had no doubts — and that it was serious. She would request an urgent hospital appointment for me. Her emotional attitude had suddenly shifted to a professional cheeriness through which I could see as clearly as through glass. And I felt suddenly thrust into another world. One which separated me from others by a word.

I left the surgery and walked to the park. It seemed extraordinary to me that I should have cancer. There is no history in my family; I have never been a smoker and was never much of a drinker; I have had no alcohol for close on forty years; I have always kept very fit and in recent years have practised intermittent fasting; I have been a vegetarian, mostly at the vegan end of the spectrum, most of my life and latterly have been completely vegan. The conditions most likely to give rise to cancer have been absent from my life and yet it had finally chosen me — perhaps as my companion to death.

I needed time to reflect. What was I to do with whatever span of life might remain? How and where should I die? Who should I tell and how should I inform them? …And, thank goodness, my mother was dead. I would have been unable to bear her anxiety and would have felt obliged somehow to survive her. Now, at least I was free to die — one blessing; and another — should it prove terminal, I would dodge the rigours of old age; yet another — my body was too old for my restless spirit and was giving way more and more under its strain. Well, now I can get a new one — but I must retain the initiative, meet death halfway — the final and the greatest opportunity in this life to Go Forth.

I told my community and a few friends that I probably had prostate cancer. …Why did that gap always appear? I am still in their world and they are in mine, yet they seem to drift away like ghosts — but not completely; then they forget and come back.

A couple of days later, I was musing in the car on the way to Vajrasana for the weekend. Where should I go to die? Somewhere remote, lonely and beautiful; the west coast of Scotland, perhaps. I want to die alone, outdoors in contact with nature.

“What about old Order members, Devamitra?” The question jolted me from my reverie. I hadn’t a clue what they had been talking about.

“They must learn to become like ghosts,” I replied, saying the first thing that came into my head. Singhamanas was driving; Ruta laughed. I forget who had asked me. They all seemed nonplussed by my response, as indeed I was myself. Why did I say that? But the more I thought about it the more it made sense.

Shrine-Room-Vajrasana-Retreat-Centre_James-Newton_04

I shared a room with Singhamanas and one of the mitras on the team, but had nothing to do on the retreat other than just be there, hang out in the background, a barely perceptible, positive presence. Because of chronic back pain I missed most of the meditation sessions and just sat in the retreat lounge looking out across the fields, or talking with anyone who came and sat with me — team members or retreatants; there was a constant stream. Occasionally I was alone, free to delight in the shifting light of the autumnal landscape.

Erection?

A specialist urology nurse, spelt things out to me in detail: MRI scan, bone scan and then a biopsy all within two weeks. The bone scan would determine whether or not the cancer had spread to other parts of my body.

The word ‘suspected’ was not part of her vocabulary; but they would only know for certain after the biopsy; then they could work out a treatment plan for me depending on the kind of tumour I had. Yes, my PSA level was very high, but not astronomical — it can hit the thousands. Surgery? Apparently, I would no longer be able to have an erection if I chose that route. “That wouldn’t trouble me.”

“Do you find it difficult getting an erection?”

“Well… it doesn’t happen very often… but if I made an effort I’m sure there would be a response… I am an old man, you know.”

“Oh, no! You’re young to have this.” This — no uncertainty that I have this.

“We’ll need another blood test.” She glanced at my panier bag, frowning slightly. “Did you cycle here?”

“Of course.”

“Do you realise that cycling pushes up your PSA because of the pressure the seat puts on the gland?” No, I did not. But it made no real difference because it would not push it up to 46; still, there could be slight inaccuracies in my results including for the test I was about to have.

“You seem remarkably unfazed by all this.”

“Well, you haven’t issued me with a death warrant, yet,” I replied, thinking once more of Keats.

“Oh, I don’t think this is going to kill you!” She told me I could call her any time and gave me her mobile number. “And don’t cycle in for the biopsy. Probably best to keep off your bike for a few days afterwards, as well.”

Biopsy

While I was waiting at the hospital for the biopsy, one of the registrars approached me and asked if I would be willing to give a blood sample for research purposes, together with my consent for the use of my medical record. They were hoping to find ways of identifying more accurately those who needed and those who did not need a biopsy.

I was somewhat reluctant to give them yet more of my blood mainly because my two previous samples had been taken clumsily. (They seem to be forever after it; are they feeding pet vampires on the quiet?) He very kindly took me to a phlebotomist whom he insisted would be very gentle — as indeed she was.

I’m glad that I agreed. The biopsy was excruciating; the fewer chaps who have to undergo it, the better. (The urologist only referred to men as chaps.) He gave me two injections of local anaesthetic directly into the prostate gland then took twelve samples from it. It felt as if he was using a staple gun somewhere in my nether regions, stapling a chap back together. He rambled on, “Not long ago they didn’t give chaps anaesthetic for this procedure.” I cannot imagine how horrible that would have been for the chaps subjected to it.

The MRI scan had revealed that a large growth covered most of my prostate and that just outside it there were two enlarged lymph nodes looking ‘highly suspicious’. (Internal terrorists perhaps? Or did he say nymph modes, that sounds more like my kind of thing.) But is it cancer? “Highly likely.” (Why is he so cautious with his words? He knows perfectly well I’ve got cancer.) However, the bone scan had proved negative; there were no indications of cancer having spread elsewhere. But most alarming was the amount of blood that came out in my urine over the subsequent forty-eight hours. “Most chaps find that it stops after a couple of days,” but some of mine was still trickling out three weeks later.

The biopsy results would be ready in two weeks, but the consultant urologist was on annual leave. Consequently, I had to wait four weeks for an appointment. The nurse arranged a separate appointment so that I could be told the results, but, as this would not move things forward in any way, I cancelled it. I wanted to get away in time for the London Buddhist Centre’s (LBC) winter retreat at Adhisthana in Herefordshire and I did not want to think any more about cancer until I returned to the hospital.

Several people told me that prostate cancer was very treatable and that most old men die with it, but not of it. ‘It won’t kill you’, was something of a jocular refrain. And yet, I knew that that was not entirely true and it seemed to be at odds with the urgency with which my case was being treated.

Adhisthana

 

winterretreat-8-av-12_pe

The retreat at Adhisthana was a welcome change from visits to hospitals and their associated concerns. I really was able to leave it all behind me apart from the occasional butterfly stirring briefly in my stomach, but I was careful not to allow them to alight.

I had been hoping to see Bhante[i], my friend and teacher, but unfortunately when I arrived he was in hospital suffering from pneumonia and so I assumed that a meeting would not be possible. However, he was discharged just before the end of the retreat and, the day after his return, we met. He looked so weak and tired I dared not stay more than a few minutes; nonetheless, I was very pleased to see him.

He mused with me about my health. “You have done everything right”, he said, “and yet this has happened”. He added that he thought that there was an element of luck in life, telling me to remember how Napoleon chose his generals. (Foolishly I had forgotten… or perhaps I had never known in the first place.) Before appointing them, he would ask, ‘Are they lucky?’, that was all, apparently. However, I do not consider myself to have been anything but lucky throughout my life, even now. I feel I have been blessed and, as I made clear to him, that blessing has come directly from him — whatever his faults might be. My cancer is simply one of samsara’s dirty little tricks. It keeps me on my toes lest I become complacent.

Confirmation

A few days after the retreat I was back at the hospital for the biopsy results.

“Hello,” said the young woman seemingly in charge of my case.

“Oh, I was expecting to see Mr Jones”

“No. He is a urologist. I’m an oncologist.”

“I see. So, you are going to confirm that I have prostate cancer.” My response seemed to throw her; she hesitated before replying.

“Well… yes, but you are a few steps ahead of me.” She explained that there was a spectrum of prostate cancer from mild to aggressive and that mine was towards the aggressive end. My treatment would begin immediately with hormone therapy which would continue for three years. In case I should be in any doubt, she said “You have a serious disease.” My conviction too — and then, “Are you able to have erections?” Gosh. The women in this department seem obsessed.

“I believe so. I mean, I don’t exactly try. …It’s an embarrassing question.”

“Not for me. I ask it of men forty times a day.” Really?

(I could imagine my mother’s response in her Teesside accent, “Ee, whatever next, lad?”)

The next step was a PET scan to see whether or not there was any ‘activity’ elsewhere in my body. She would be surprised if anything showed up, but they needed to be certain before they could pursue the next phase of treatment. If the scan highlighted nothing new, this would further indicate that the cancer was still contained within my pelvis and should therefore be curable. I would then receive six infusions of chemotherapy at intervals of three weeks followed later in the year by eight weeks of daily radiotherapy. “You might like to read these.” It was information on chemotherapy and ‘locally advanced prostate cancer.’

“Thanks, but I probably won’t bother,” I said, taking them. She then gave me a prescription for the hormone therapy. I was to begin with a short course of tablets to prevent a testosterone flare. This would then be followed about a week later by a three-monthly injection to be given at my GP’s surgery.

This treatment would inhibit the production of testosterone which generates the prostate cancer cells. There might be side effects, she pointed out with a hint of amusement, “Similar to those of a postmenopausal woman, mood swings, hot flushes… You may also develop some tissue.”

“You mean man boobs?” I asked, slightly alarmed at what this might mean at the swimming pool.

“Possibly.” Crikey. We said goodbye and I went to collect my prescription.

jayam

As I was leaving the hospital, I recognised Jayamitra, one of my fellow Order members, on his way in.

“Devamitra! Bless you! What are you doing here?” I told him. “That’s what I’ve got.” Thursday afternoons must be the time for prostate patients. Unfortunately, in his case the cancer had spread into his bones, which means that it was terminal. The first indication of anything wrong had been back pain from a tumour that had spread there, by which time it was already incurable.

I felt grateful for the flood of vermillion that had bled with my urine, months before. It was not yet a death warrant, but a warning which I had heeded. I had had no other symptoms. How else could I have known?

Now that the cancer was confirmed I needed to reflect further. I must not become complacent and assume that the PET scan would be clear. I have never forgotten that Milarepa warns constantly against hope and fear and I did not want to indulge in hopes that could turn traitor. It was another spiritual opportunity to be seized, one which reveals itself in complementary ways: the appreciation of beauty and reflections on death — death which feels real and close, not abstract and distant; death which is lived.

The real battle I faced was not with or within my body, but within my mind. I understood this the moment I walked out of my GP’s surgery with ‘suspected’ prostate cancer. What I feared most was not death or pain, but loss of mental equilibrium. So far, I had succeeded, but there may be tougher tests ahead. One came from an unexpected quarter.

Informing others

As there was no longer even a theoretical doubt that I had cancer, I wanted more of my friends to know and I decided to email some of them. The responses I received, as you would expect, were all concerned and sympathetic, but in some cases, there was an element of anxiety — not mine, but theirs, and this could be quite difficult. They seemed to need to talk about it in a way that I did not. I simply wanted them to know and would have preferred to leave it at that as I did not want cancer, or talking about it, to dominate my life more than was absolutely necessary. Naively, it had not occurred to me that some of them might need to talk with me about it more than I cared to do so. Occasionally I found myself in the anomalous position of having to reassure them about cancer — as if I was helping them to deal with their own fear of it.

If one of my friends was anxious, I could react to their anxiety with my own. Negative emotions can be contagious. When this first happened I was rather thrown and asked myself why had I suddenly become anxious? As I reflected, it became clear that it was not my anxiety, but theirs and that what I had to do was meet it with metta.

Something similar happened when I received a letter from my GP’s surgery inviting me to make an appointment to talk about my care plan which began with an expression of regret at the news of my “very serious diagnosis”. Suddenly there was a butterfly in my stomach. “Damn it! Leave me alone.” It fluttered away and left me in peace. (I never was one for kindly awareness; it works for some, but not for naturally aggressive men like me.)

Although the letter was well-intended and clearly meant to be supportive, such comments can be counterproductive. Fundamentally I felt upbeat about my diagnosis. I regarded it as a challenge — not one that I would have chosen, but since it was there, all I could do was meet it, however, to do that I needed all the positive emotion that I could muster. In Milarepa’s terms it was simply yet another of the myriad manifestations. I must embrace it — even enjoy it for what it was.

I made an appointment with an Order member who I knew was working as a locum at my surgery. I had noticed that it was she who had signed a prescription enabling me to have a hormone injection which I had had some trouble getting. This in turn had made it possible to receive the injection at an appointment I had made several days earlier with one of the surgery’s nurses which otherwise I would have had to miss.

When I met her she kindly asked if I was happy to talk about my ‘care plan’ with her, which of course I was. Not that there was much to discuss. I did not need a counsellor as I had an excellent community and many friends with whom I could talk about anything that troubled me (not that I could think of much, apart from dealing with the occasional administrative inefficiencies of the NHS, wonderful though the NHS is in all other respects.) The difficulty over my prescription had been caused by the Hospital not properly requesting it of the surgery, apparently.

Calvin’s support

A few days later I phoned the urology nurse to let her know that I had managed to have the hormone injection, but there was also something else bothering me. Ever since my GP had manually examined my prostate I had been aware of discomfort both in my groin and further down. I had assumed that this was to do with my tumour, but I thought I had better ask the nurse as it was getting increasingly painful, mentioning rather gingerly that my right scrotum was rather tender even to the point that it was getting painful to walk.

“Oh, no!”, she laughed, “your tumour is inside your body, not your scrotum sac. Do you wear boxer shorts?” It is astonishing the intimate facts that one has to share with these ladies.

“Er, yes.”

“Try something more supportive — trunks, for example.”

“Ah, yes of course.” I thanked her for her suggestion and quickly concluded the call, in case we should stumble into the erection question again, and promptly acted upon her suggestion. Matters certainly improved with a little help from Calvin Klein.

Heightened awareness

Despite these minor concerns in many respects my life had never been better. I rarely slipped into unskilful mental states, and even then, not for long. Many times, I walked around the large pond at Victoria Park in East London appreciating its winter beauty, thrilling at the sudden flash of sunlight on a cormorant’s wings or the brilliant green of the parakeets; the subtle winter colours adorning the trees highlighted by the sun’s lateral rays.

No doubt this was all heightened by my medical issue and I am grateful to the cancer for that. It is not that this was new, but I felt it yet more vibrantly and I have no doubt that that was due to my heightened sense of my own impermanence — precious moments that I must cherish fully, because I knew they would not, could not last.

Counties

One such moment caught me unawares on a train on a trip to Canterbury. Sitting alone, I was looking out of the window at the rather dreary prospect as we sped by, when I felt overcome by a sense of detachment from the world and its problems. They were no longer mine to sort out. I do not mean that arrogantly — of course, I cannot sort out the problems of the world ­— but somehow, they seemed not to be mine. It was not that I no longer cared, more that they seemed impersonal, beyond the purely personal, and as I continued to stare out of the window I was blessed by a deep tranquillity — the perfect mood to appreciate the seat of Anglicanism.

I had not been to Canterbury before and could not have imagined the impact that its wonderful cathedral would have upon me. I have seen many of Europe’s great churches, including plenty that are far more beautiful, but none that have affected me so powerfully. I cannot easily account for it, but I was swept away, as I wandered around, in awe of something I could not identify.

PET

Always at the back of my mind was the forthcoming PET scan; constantly, I reminded myself to resist expectations — to prepare myself for any outcome. This was a valuable tool — it was driving my heightened awareness of impermanence. I was actually beginning to think that the scan would find cancers elsewhere. Despite Calvin Klein, my nether regions were getting more painful, glands in my neck were swollen and my upper rib cage had developed a rattle.

I should have gone to the GP, but figured that all would become clear with the scan and that therefore there was no need. I half expected to be told that not only did I have prostate cancer, but also testicular and rattling-rib-cage cancer, with perhaps throat cancer thrown in as a bonus.

Finally, after further administrative problems, I had a date for the scan in the basement of the hospital and a week later I got the results. Oncology was running very late. As I entered the waiting area I noticed Jayamitra sitting with his sister. However, rather ungenerously, I wanted to keep my mind focussed and did not want to engage in conversation. Besides, I could not sit in those dreadful plastic chairs as they worsen my chronic back pain and I always pace up and down when waiting, even if that means for two hour stretches or more, which it often does. But he had seen me and came over to say hello.

I was ashamed of falling short, but was glad that he had given me the opportunity of making amends. I was very sorry to hear that he was finding things increasingly difficult both emotionally and physically, which was a bit too close to the bone for me as I was bracing myself to be told that that might be the direction in which I was now heading — at least physically if not emotionally.

Without thinking about it, I just said “Equilibrium of mind is more important than life,” to which he quipped,

“Yeah! Equilibrium of mind is more important than life. Discuss!” I had meant to say that it was more important than death, because I had often dwelt on this thought. However, I enjoyed his jovial response. Soon afterwards he was called in for his appointment and a little later I was called in for mine.

It took a while for the oncologist to get on to the scan results, which she mentioned only in passing, casually indicating that nothing new had been revealed and that we could now get the chemotherapy organised. Somehow, she lost me and I could not quite believe what I thought I had just heard. Not wanting to be in anyway impolite I did not wish to interrupt the discourse on chemotherapy, but I could not suppress the rising fit of giggles which disturbed it.

She was evidently taken aback by my strange, if not eccentric, response, but proceeded, “You realise you will no longer be able to have children?”

I could contain myself no longer and laughed out loud, “I’m sixty-eight, for heaven’s sake. I’m an old man!”

“Oh, I don’t know about that. One of my patients fathered a child at seventy-two,” she replied having caught my humour.

“And Picasso fathered one at eighty,” I responded [this was not true, though I believed it at the time], “and I’m no Picasso.” As we were veering dangerously close to the erection question, I distracted her with a question about fasting.

Finally, we got down to dates for chemotherapy, which was now due to start within a couple of weeks once I had been briefed by a chemotherapy nurse.

So, I did not have testicular cancer, but something was not right below. Two days after my consultation my right testicle had swollen to an alarming degree, looked very red and was excruciatingly tender. As it was a Saturday morning I could not see a GP. Two of my community members urged me to go to A&E, so somewhat reluctantly, I walked bandy-legged (to minimise any contact between the top of my thigh and my swinging, overburdened scrotum sac) to my local hospital. Was I relieved to get there!

I was discharged two hours later with pain-killers and antibiotics. I had had an infection resulting in epididymo-orchitis which, I was informed, is an extremely painful condition. That was good to know; it made me feel less like a wimp. I was further assured that it had nothing to do with my cancer — although I suspect that there was a connection, as the whole episode was probably triggered by the manual examination of my prostate by the GP.

Consequently, for almost three months I had tolerated the pain unnecessarily, understanding that cancer is a painful disease and having believed that the pain was from my tumour. One of the problems with cancer is that if anything goes wrong, if you experience any pain, it is easy to assume that it is simply a symptom of the cancer itself.

Any names in this blog attributed to patients or hospital staff are fictitious.

[i] Bhante is an honorofic term used when addressing a Theravada Buddhist monk which literally means ‘Venerable Sir’. Within the Triratna community, although Sangharakshita, its founder, is no longer a monk, many of us still use this mode of address when we are with him or referring to him both as an expression of respect and affection.