“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.
Most 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?
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.
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.
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.
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.”
Antony 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.
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.
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.
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.