Can-can Cancer Dancer 6 — Susie and the Skunk

Let my fate be a warning

I had intended to visit Jayamitra who was dying at St. Joseph’s Hospice in East London, stricken by the same disease that was afflicting me, but my legs were so weak it would have cost a huge effort to get there. He died before they had regained their strength.

Unfortunately for him, like many men, he had not been diagnosed until well after his cancer had metastasised. So far, I had been lucky; though at a relatively advanced stage, mine was still potentially curable at the time of diagnosis. But it had probably been a close call.

“What’s going on with you guys?” an old friend had asked in reference to the number of Order members recently diagnosed with prostate cancer. “I’ve had my PSA levels tested every year since I was fifty.”

But, you see, “Most men die with prostate cancer, not of it,” is the common refrain, meant to reassure, which was voiced to me even by a GP. Doubtless it is true, but it can trivialise a very serious disease, perhaps obscuring the fact that prostate cancer kills more men than breast cancer kills women.

It would never have occurred to me to have requested an annual PSA test from my GP. Had I done so, as some of my friends had, I might have spared myself and my friends a lot of inconvenience. I might not now be facing the threat to my life that confronts me daily and I would have saved the NHS a huge amount of money. Let my fate be a warning to any man reading this.

Having pursued a healthy life-style and having enjoyed robust health all my life, perhaps unconsciously I had considered myself immune to any form of cancer. Moreover, I had believed that there had been no family history. Then, five years before my diagnosis, I learned that my paternal grandmother had succumbed to breast cancer, not to diabetes as I had previously understood. She was the only person on either side of my family known to have had cancer.

More recently I learned that a link has been established between breast and prostate cancer. So that any man who has a close female relative who had developed breast cancer might be more susceptible to prostate cancer. (I believe that this also works in reverse.)

But whatever the cause, it did not change the reality I had been made to face as, once more, I lay on Mercury’s altar, offering up my cancer cells to his devouring beam.

More water wars

Even before I had finally made it into the treatment room, I knew there would be further delay.

“Craig gone for the bladder scanner?”

“Yeah,” Sangita replied. Why had I bothered to ask? I had seen that wretched, wayward planet-hopper heading for Saturn just a few minutes earlier. It’s never there when a bladder is getting inflated ideas of its own importance.

The department had two scanners, but one had been unserviceable ever since I began my treatment leaving the other to be shared by the entire solar system. Often, I had lain on the table straining my ears for the slightest hint of rattling wheels, heralding its approach from some remote celestial body. Frequently I had been beguiled by phantom sounds of that longed-for clattering along the corridor that promised imminent relief, only to be disappointed, duped again by an auditory hallucination conjured by my wishful imagination.

“Are you sure you don’t want to empty?” Sangita asked, a little anxiously when Craig read the scan reading. Of course! But not until after the treatment.

“Let’s go. Just be quick.” They promised — and they were. They raced through the usual protocol asking me for my address and date of birth before double-checking my dosage.

“Two loops at one point two volts,” Craig said. Sangita confirmed. He had spoken softly as always, as if I was not supposed to hear, but, living with a medical engineer, I now knew that that meant megavolts. Jeepers! First, they poison you with chemo then they fry you. Not that the megavolts actually hit you, but it takes that much power to generate the radiation that does.

“Here… in case you need it.” A seemingly disembodied hand appeared and a soft grey object was thrust onto my chest by Sangita. I clutched it with both hands which had been clasped together high on my chest, corpse-style — as if interred within some sepulchral chamber — well out of the way of the beam’s path. I laughed when I recognised the urinal.

urinal

“Thanks… but I won’t.”

 

Then the bleeping warned of the closing door as I heard the scurry of her retreating steps overlaid by her familiar, brief valediction, “Nice and still… Here we go!” And the wall of lead closed upon me, sealing me within, like the boulder in front of Christ’s tomb, alone once more at the heart of Mercury’s orbit, bracing myself for the latest battle with that bloated water bag. All the whingeing and whining going on in my nether regions was so unfair. It really was not my fault that it was all but brimming. Mercury had been uncooperative so that again things were running late and my bladder was more than thirty minutes fuller than it should have been.

“Thank you for being so patient,” Craig said, a little guiltily, as soon as they returned.

“Oh, it’s not your fault,” I insisted, removing the tissue they had placed as usual (in the absence of fig leaves readily at hand) to cover my exposed genitals. “Here — you can keep it,” I said to Sangita, after hitching up my boxer shorts, as I returned the urinal to her. “Forgive me, but I’m heading straight for the Ladies.”

“Please feel free!” she responded, smiling encouragingly. It was reassuring to have official sanction. Drat! It was engaged; fortunately, the Gents was not. As nonchalantly as I could, I sauntered along, desperate to keep face, holding the back of my gown closed as I headed for my distant destination, close to Mars.

What Sangita nicked

MS-bladder-scanner-004

The following morning, I had a little less in my bladder — not that it refrained from its inveterate grumbling.

As I returned to change out of my gown, in one of the two cubicles, the door of the other was wide open. A man, probably in his forties, was sitting there gowned and highly agitated. He could keep neither his arms nor his feet still, the latter tap-dancing the floor. I smiled encouragement into his anxious eyes, but he didn’t seem to register my presence. He was obviously uncomfortably full.

“You can come through now,” I heard the familiar voice of Sangita call out to him, as I closed the cubicle door behind me, mercifully glad that I had only nine more dates with Mercury. Many times had I waited with anticipation for the sound of Sangita’s voice uttering those same words to usher me in.

A few days later, as I was about to lie down ready for the beam, I noticed a swish bladder scanner nearby. “You’ve got a new one!”

“Yeah,” Sangita replied.

“So now you have two working machines again.”

“No… We nicked this one from the CT unit. It’ll have to go back.”

“Oh… pity.” I pondered a moment before putting a question that had troubled me for a while. “Has anyone ever passed water during treatment?”

“It happens — more often than you might think,” Rick responded.

“Not that I’m about to, by the way!” I said, reassuring myself as much as him, as he scanned my bladder.

“Well, if you’re able to hold less and less, start doing the pelvic floor exercises again,” he advised.

“Oh, I never did them; I could hold seven hundred mils before starting all this.”

“Really… You’re a bit over,” he said checking the reading. “If you can hold this much at this stage, you’ll be fine.” Good — but it was costing more and more effort, especially at night. If I woke up with what felt like a full bladder, passing water was strenuous and could take several minutes. It was as if my muscles were still asleep; some were waking up rather grumpily, convulsing as if I was about to vomit.

Dependent

Several people who had undergone both chemo and radiotherapy had told me that the latter was much easier. I could understand that, but, in some respects, I had found it much more difficult. The fatigue in my legs had never been so severe under chemo and my strength had always recovered significantly as each cycle wore on. But with radiotherapy there was little respite. During the final weeks of my treatment I had a three-day break due to a bank holiday and by the end I felt the energy returning, which was heartening.

“You’d be surprised how quickly it will return when you’ve finished,” Rick had assured me when I mentioned it to him.

In the meantime, however, I had become markedly dependent on others and was wheelchair-bound if not house-bound. Getting up the two flights of stairs to my room from the front door had become increasingly taxing and occasionally I needed to be virtually carried up as I had strained the muscles on my upper arms. Pushing myself upstairs with my arms several times a day together with spinning my wheels a little over-enthusiastically had taken their toll.

“Have you used a wheelchair before?” one of the radiotherapy receptionists had asked me.

“No.”

“But you seem remarkably adept.”  Perhaps I had been, but now I could barely propel myself forward!

At least I had sufficient energy to get down to the LBC, though not as frequently as I would have liked. A highlight had been the celebration of Bhante’s birthday, which included three very different, but equally beautiful talks celebrating him as fully as he deserves. It was an event worthy of the occasion led with great feeling by Subhadramati.

Several days later on Dharma night, I spoke about Amoghasiddhi but unfortunately, I had been feeling particularly fatigued. Perhaps I should have found a stand-in, but I had been reluctant to throw up the opportunity. 

Susie and me

Susie

Sometimes I had wondered about Susie and what might have passed through her mind, her memory haunting the recesses of mine. At the very beginning, the same parasite had been my agent and hers. I had worked with her at the Octagon Theatre in Bolton long before she received her BAFTA and Tony award nominations. I had lost track of her when I stopped working as an actor, but I heard of her occasionally from mutual friends.

She had worked to the very last, seemingly denying it — though all her friends knew — and she refused to talk about it or acknowledge it, they said. She was only thirty-four, same age as me — then. I was saddened when I heard — and shocked. Albert Finney had hosted her memorial programme at the National Theatre. She was the first person I knew who had died of cancer.

I have never denied my cancer, either to myself or others — even if that is what she did — although I find it difficult to believe that she would have denied it to herself and I could understand if she had refused to talk about it with others, perhaps defiantly so. I had known from the outset that my cancer could kill me, as it still could, but I did not care to dwell upon the details and only spoke about them reluctantly.

And yet, did not that convict me of a subtler form of the same crime? Had not her memory returned to accuse me? So often I was unwilling to get too close to the edge, not wanting to look into the abyss, even though when I had done so it had vitalised me, focussing my mind on the deeper issues I had wanted to confront. Occasionally I had been dragged there by circumstance — a chance comment, the glance of fear or repulsion in someone’s eyes — and was forced to stand and look down once more.

Initially, I had just wanted to get through the treatment then deal with the outcome when it was over — so I had convinced myself. But that was merely a rationalisation of the reluctance I was reluctant to acknowledge, an avoidance tactic to prevent me from uncovering what lay beneath the resistance. But there comes a time…

Prognosis

My treatment was virtually over. It was my final visit to Mercury, but first I had to see my consultant. “I’m sorry to have kept you waiting so long,” she said, “I had wanted to call you in earlier, but I was hijacked by another patient.”

I wheeled myself into the consulting room. “I’m a bit concerned to see you in that wheelchair,” she said; her words were heart-felt, not merely dutiful. We have developed a good rapport and I have come to really like and appreciate her.

“Oh, I can walk,” I assured her, “but not very far.” She then introduced me to her latest registrar and I wondered, are there any male prostate cancer specialists? I have yet to meet one. I must ask her next time.

After a few pleasantries, we then got down to serious matters. “There’s a fifty percent chance that the cancer will recur,” she began. “You see, once it gets into the lymphatic system, it is very difficult to cure,” she continued, looking me straight in the eye as I returned her gaze. “We’ll monitor you every six months,” she said, handing me a slip for my next blood test, six weeks hence, before our next consultation.

My blessed lymph nodes! I had always known that they were the most dangerous factor in my diagnosis: ‘T3b N1 M0 Gleason 4+5=9’. ‘N1’, referred to the lymph nodes ‘M0’ indicated that the cancer had not travelled beyond the pelvis, meaning that it was still curable. N1 was my potential assassin; M0 had been my saviour, for the moment. This is only just the right side of terminal illness; had M0 been M1, I would now be heading rapidly towards the bardo[i], driven hard by my 4+5 tumour — speeding, in fact, like a car hurtling recklessly along a motorway well beyond the speed limit, indifferent to whatever was caught in its way, bent on self-destruction.

How unpredictable is life! Several years ago, at Madhyamaloka, Bhante had been listening to the radio, as he often does. During one programme, he had heard it claimed that one in four of my generation could expect to live to be a hundred. He grinned, wagging his finger at me, “And you will be one of them,” he said firmly, as if he had no doubt. The thought horrified me, having witnessed the reality of old age, but the chances of that happening now must be very slim, whatever they may have been in the past. If I survive this disease, I will consider myself to have been truly blessed.

“I’d like you to help me make a financial decision,” I said to the consultant. “By having deferred my state pension, I have two options — I can accept either a rise or a lump sum, but, to take the increase only makes sense if I have a good chance of living another seven years.” She looked at me seriously. “If I’m likely to be dead in three years’ time, I would opt for the lump sum. …You can work out the question.”

“You mean, if I was to place a bet, which would I choose?”

“Yes.”

“I’d put my money on the first; I think you have a very good chance of living another seven years,” she said, smiling.

She then arranged a DEXA scan for me, as I had been on hormone therapy for almost nine months and would continue for three years in total. As my mother had had osteoporosis, it was possible that this treatment would reduce my bone density, in which case, I would need to take a calcium supplement. I was already benefitting from hot flushes, courtesy of my twelve-weekly injections, but thankfully, the man boobs had not manifest. I am still able to hold my head high at the swimming pool.

Farewell

It was late afternoon by the time I headed for Mercury. “I’ve got something for you,” said Rick.

“And I have something for you, too,” I replied, “I’ll give it to you when I come through.” He handed me a flier for a session on ‘health and well-being for men with prostate cancer, post treatment.’ “Thanks, but I don’t think I’ll come.” After changing into a gown, I passed once more beyond that impenetrable barrier which would soon close upon me for the last time.

“Here,” I said, handing over my gift together with a card and a flier, “this is for all of you.” He smiled warmly, then set me up for my final treatment. There was just enough water in my bladder to start straight away then, soon afterwards, Mercury orbited me and I was done.

Another dry run — not that I had ever seriously thought I might leak — despite having undergone thirty-nine sessions. I had only met one other patient prescribed that many; everyone else had been scheduled for twenty-nine, or much less. Even ambulance drivers were astonished that I had so many appointments.

When I came out of the cubicle having changed out of the gown, Rick was waiting for me extending his hand, obviously wanting more than just to shake mine; but we were men and I was almost old enough to be his grandfather. Although we bungled it, there could be no mistaking the mutual warmth as we wished each other well.

“Thanks for this,” he said, still grasping the flier advertising the LBC open day I had given him. He seemed interested and knew that I would probably be present the following Sunday, even though I would not be teaching.

I was sad to say goodbye; I had liked him from the start when he had spoken at the introductory radiotherapy seminar and we had often had brief chats since — as I had also with Yasmin. I was sorry not be able to say a few parting words both to her and Sangita — who had been with me for almost every treatment.

Although I was glad to have both chemotherapy and radiotherapy behind me, as I left Mercury, I felt a sudden, brief surge of insecurity and immediately understood why. While undergoing these radical treatments, there is a sense that the cancer is under control — that for the time being you are unlikely to deteriorate — and you are in regular contact with people who are looking after you; then the treatment is suddenly over. Having been seduced into a false sense of security, you are now forced to remember that you are on your own — as you always have been.

‘Oh build your ship of death, oh build it! / for you will need it. / For the voyage of oblivion awaits you.’[ii]

I had acted long ago upon Lawrence’s exhortation, but had kept to harbour. Even so, in the moment, I felt I had launched into stormy seas, a solitary sailor in a small boat, seeking the deep calm beyond.

Nutters

I had the car to myself as I was driven back from the hospital by the African driver. The radio was on, as usual, and there was the hourly pause in the music for the latest news. I was barely conscious of the disembodied, dead-pan voice seemingly recounting the same old stories, until I heard, with a mixture of amusement and horrified dismay, that, “The ‘Poundland’ chain announced today that it is withdrawing one of its products, out of concerns that it may be offensive to people with mental health issues. As from today, packets of chocolate-coated peanuts, marketed as ‘Nutters’, will be removed from shelves…”

nutters

The driver doubled up in a fit of uncontrollable laughter. Fortunately, we were stationary, locked in a traffic jam. When he had recovered, I grinned at him. “I’m glad you find that funny,” I said.

He shook his head. “Man… Oh man!” he exclaimed, as he continued to chuckle, while I inwardly asked myself,

“Who are the real nutters?”

Recur?

It was a black card on which the letters had been printed in large blue type: ‘Urgent’. Beneath, in smaller white characters, it said, ‘I have a medical condition that means I need to use a toilet quickly. Please can you help?’ I had never used it and could not imagine I ever would, but it had been inside my wallet ever since it was given to me at the radiotherapy seminar. “Just go into any pub, show it to them, and they’ll let you use the toilet,” Rick had said. Apparently, local government authorities were paying the celebrated alehouses of England for this service — it is cheaper than funding public toilets.

I had never taken note of the words on the reverse side of the card, but I did now: ‘Speak to our Specialist Nurses,’ it urged and so, since a question had surfaced since my consultation the previous day, I called the Prostate Cancer UK helpline. What was the significance of the word ‘recur’?

“It could recur within five years locally or remotely,” the nurse said, confirming what I had suspected. ‘Remotely,’ would mean secondary tumours and terminal illness. Then she had questions for me which I was happy to answer. I told her about my treatment, since she asked.

“Then you’re lucky,” she said, “You’re one of the first to receive this sequence. Although it is very early days, studies suggest that this may significantly reduce the likelihood of recurrence. If it does recur, there’s always docetaxel,” she continued, as if that might reassure me, “You’re a responder; not everybody is.” Good — but I doubt that I would be willing to endure a second round of chemo, should the worst happen.

After further questions, we discussed the fatigue in my legs. She was not surprised; she had encountered it several times before.

“Because the cancer got into your lymphatic system, that will have been heavily targeted by your treatment. That’s why they gave you thirty-nine sessions of teletherapy. The lymph glands release fluid to your muscles which helps you to walk, but yours have been pounded very hard to get rid of the cancer. Don’t expect the energy to come back quickly. It could take quite a while.”

A funeral

Later that day I went to Jayamitra’s funeral. I had thought twice about attending, as my legs were feeling particularly weak, and had decided not to go. But how could I not? He was my Dharma brother.

He had always seemed to have held me in good regard, occasionally sending me cards of appreciation from which it was evident that he felt an affinity with me. We had also lived together for a few months fourteen years previously and, poignantly, we had met twice at the hospital where we had both been treated for a common disease to which he had capitulated at last.

Seeing his body in the LBC shrine room was a strong reminder of the perilous situation I was in. Messengers of death seemed to be approaching me from several directions at once and, though I did not yet know it, another was fast approaching.

The old skunk

It was still only twenty-four hours since I had talked with my consultant, but so intense had been the interval between our consultation and the end of the funeral, that time seemed to have been suspended. Yet I had had precious few moments to reflect. All my mental energy had been engaged by the tumult that had erupted in my mind as I was cast into the confusion of riotous, conflicting mental states. And still no respite seemed in sight.

The turbulence I was experiencing was reminiscent of a two-month period during the early months of a nine-month solitary retreat, four years previously; but, on that occasion, of course, there had been nobody to whom I could talk to help me clarify what was happening. I had been thrown hard against my inner resources even to the point of feeling that I was in danger of losing my mind. I had had to fight extremely hard to come out on top.

This was the key experience which had enabled me, right from the start, to deal positively with cancer. It had been like a dress rehearsal before the real show. On that earlier occasion, I had been dealing with phantoms, but the spectre haunting me now had more substance and I knew that I must take a step further.

Trying to understand what I was actually feeling had become a conundrum — it seemed so complex. I needed to objectify the turmoil that this succession of events had precipitated. Fortunately, at its height, I had the perfect opportunity, just a few hours after the funeral. It was ‘community night’ — the one time each week when, after the usual shared meal and household chores, me and the men I live with, spend the remainder of the evening together.

They listened patiently and sympathetically as I recounted the ferment that was stirring within and when I finished they all seemed at a loss for words — not that I expected any — but they had done what was required; their willingness to listen had helped me to perceive the more obscure currents within my mind, highlighting the individual conflicts pummelling its equilibrium.

What was I feeling? It was still hard to tell, but something had loosened. The previous night all I had felt was a tight knot in my abdomen. Fear seemed the obvious culprit. I knew that fear was a protective mask worn by self-clinging — a facade to keep threats at bay. I had seen it before. “Stand back!” it seemed to say, “you are entering dangerous territory.” But it was a face, with no living feature, attached above a scarecrow’s fluttering rags, hiding a powerful force I had, perhaps, once glimpsed, but which dare not be seen by human eye. How easy it was to be taken in by its masquerade then rapidly retreat, like a rabbit startled by a rustle in the grass, diving deep into the darkness of its warren, terror-stricken.

No; it was not fear — at least not predominantly, if at all. It was something closer to the surface. Shock, perhaps? No, something else. I knew the sensation. It was painfully familiar then slowly it revealed itself. Companion to Despair, I finally recognised the stench of that old skunk, Loss. It seemed absurd; I had lost nothing, but here it was, fouling my mind, dogging me like a professional mourner at a funeral. “Thank you for coming… Now you may leave.”

And yet… I had a sense that my life was over — not that I was about to die, but that I was leaving my old life behind for good. Whatever might await me in the future was seemingly more unpredictable than ever — a sensation I felt all the more acutely when I heard that the cancer of an old friend, who had had the same diagnosis as me, had just recurred.

Perhaps, perhaps…

I had been in danger of losing perspective by reacting against uncertainty. But cancer is uncertainty; samsara is uncertainty. Why do I find it so difficult to welcome it? Does it not lead to unexpected adventure, to the new experience that revitalises me? Is it not ultimately my friend?

How contrary I am! I do not want reassurance, yet I had sought it. I do not wish for hope, yet I had pursued it. In the circumstances, I had not yet sufficiently seen the vanity of either, though I knew they were both empty and that neither could deliver anything other than yet another revolution of the wheel; thus, one impulse had been pitched hard against another. I had tried to resist the forces that led to comfort and to endure the discomfort of their absence. Hence this impasse, this terrible, tightening knot in my belly, which at last was unravelling to leave me in peace.

I was content. And so I should be — my hair was growing. “It suits you. You should keep it like that,” they kept saying. “You’re looking really well,” was the other refrain, nearly always accompanied with such big smiles. I had looked yellow; I had looked grey, they had said; but not anymore.

And don’t believe everything they tell you about these treatments. I had solemnly signed my consent in the presence of a beautiful young woman. Before she had permitted me to do so, she had warned that radiotherapy would make me impotent — not that it might, but that it would. I was rather pleased about that. Unfortunately, it failed. My erectile function has survived the severest nuking medical practice permits. And I now have another reason, should I have needed one, why I shall not be investing in a vacuum pump.

I may yet live to be a hundred. If there is a fifty per cent chance of my cancer recurring there must surely be an equal possibility it will not. At the very least, I had been given a stay of execution, so far as cancer is concerned — perhaps even a new lease of life. Hmm… perhaps.

The greatest blessing

But something new had emerged. When I had been diagnosed with hypertension on my sixty-seventh birthday I was shocked. This sort of thing did not, should not, happen to me; but it had. It was the first time that I had had to face a serious health issue. Then I saw that old skunk, tail up, head turned, taking aim, mischief in its eye, about to squirt. Vainly I ran for cover then I mourned.

I had something substantial to offer others, I believed. I had been blessed when young by a spiritual friend of great depth and substance. It had taken decades for his blessing to mature, but if my health failed, its potential benefit to others would be lost.

Eighteen months later, I knew I had a serious cancer; eleven months more and the treatment was over. It was then that I felt most keenly and urgently, not so much that I want to live (though, of course, I do) but that I had a duty to live as long as I could — even to a hundred years, or more (perish the thought). I must preserve and cherish the blessing I have received and pass it on to others. I have nothing else to live for; but that is quite something.

A young man recently came to see me. We had talked several months previously when by chance we encountered each other in Victoria Park, one beautiful spring day, while I was still in the midst of chemo. He had heard me speak about my experience of cancer at the LBC and he had his own tragic tale to tell.

Now it was autumn and he had come to tell me, among other things, that I had become an important figure in his life because of what he perceived as my ‘mature’ attitude in the face of cancer and death. He had never encountered that before, he told me, though he had looked for it. For him, I had become an exemplar. May I not fail him — or anybody else. May I truly become a beacon for others.

COMING SOON: PART 7

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

[i] According to Tibetan tradition, an intermediate state between the previous and the next life.

[ii] The Ship of Death, D H Lawrence.

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Can-can Cancer Dancer 3 — Chemo Sostenuto

You forget…

Several years ago an old friend, Punya, was diagnosed with terminal cancer. I believe he was given eighteen months to live, but before he died he wanted to return to England to say goodbye to all his friends, me included. When we met, I felt immediately that something had changed. He was animated by an urgency which I had never seen in him before; all that mattered to him now was the Dharma.

Eighteen months later he was still alive when I travelled to Boston to interview a Vietnamese Buddhist monk, for a book I had hoped to write. Punya met me at Logan Airport and drove me to his home. The moment we met I sensed that there had been another change, but I said nothing. I just watched him as he drove along. Finally, I broke the silence, “What happened?”

He laughed and said, “I could see it was on your mind.” He shrugged, sighed and simply said, “You adjust; become habituated. You forget.” Seven months later he was dead, but, before he died, he had remembered again.

I did not want to adjust and forget, but I sensed it happening. All the signs were there; I had forgotten the cancer and my mind had become preoccupied with trivia. Certainly, the ulcerated skin on the most delicate part of my male anatomy was unpleasant, but it was hardly life-threatening. The large hardened swelling just below my navel was indeed tender, but was localised and clearly a reaction to my latest hormone injection. Yes, the scarlet vein on my wrist was unsightly, but it was not even painful, so why the anxiety? (It had been damaged by a tiny amount of chemo leaking at the beginning of an infusion, I later learned from my consultant.) If I was to get anxious about anything, should it not be the cancer? Admittedly I checked the anxiety as soon as I was aware of it, never allowing it to take me over, but I did not know how to counter the underlying complacency of which I deemed it to be symptomatic.

Perhaps I expected too much of myself. The period and process of diagnosis had induced a state of heightened awareness that I had endeavoured to capitalise upon, but it was difficult to sustain over an extended period. It’s analogous to bereavement. The immediate pain of grief fades with time and is eventually forgotten. I knew I had lost the edge that had driven me dramatically forward. Constant reflection no longer seemed to bite in the same way, but then occasionally something would briefly jolt me back to reality, as happened on my fourth session on the chemo ward.

Why should you be treated ahead of others, perhaps at their expense?

When I arrived, I was taken straight to a treatment room as I had one of the first appointments. I was then told that there would be a delay as the computer system was down for the fourth successive day. However, the nurses wanted to get everything in place so that if the system revived they could move things along swiftly. It was 9.30 in the morning and a cannula was once more inserted into one of my veins where it remained for many hours as computers remained unresponsive.

By early afternoon the nurses were getting restless. They had had nothing to do all day and nobody knew whether any of us would be treated. Later patients were being sent home; among them were many unhappy people, some of whom had become angry with the staff.

I had no more reading material, having slowly worked my way once more through Shakespeare’s The Winter’s Tale. I had seen Declan Donellan’s production of the play a few nights before and had been irritated by his imposition of fashionable ideology upon the text. Perhaps these ruminations were precursory to what happened next.

I became anxious. Will I get my treatment? What will be the consequences if I don’t? A succession of similar thoughts rumbled through my mind as I slowly paced up and down the corridor until I caught myself and felt ashamed.

Samsara always goes wrong! This had been my mantra for decades, often saving my mental state in testing circumstances. Why had I forgotten it at the very time I most needed it? How foolish! I demanded of myself, “What’s so special about you? Why should you be treated ahead of others, perhaps at their expense? In the widest perspective, does it really matter whether you are treated at all?” …And then, remembering Shantideva[i], I reflected, “Let others go before me, ‘Let me be medicine for the sick’…”

https://www.bodhicharya.org/wp-content/uploads/2010/10/shantideva_1.jpg

Shantideva

Thank you for being so calm

I returned to the treatment room and sat on my chair as a deep tranquillity displaced the dark thoughts that had troubled me, leaving me perfectly happy to accept whatever the outcome might be. I wished the best for all — especially for the staff who were having to deal with a trying situation, not of their own making, sometimes without the sympathy and patience they deserved.

I chatted with the nurses. They were frustrated because they could not help their patients. Because ‘pharmacy’ could not access computer records, they would not release any medication in the absence of a handwritten prescription from the prescribing doctor. Those doctors who were present were all in clinic.

By mid-afternoon we knew that some of us would be treated, but we did not know whom. It was not until 5pm that I was told that I was one of the lucky few and that my medication was being prepared. I was the second-last patient out of a very small number to receive chemotherapy that day.

Just as I was about to leave the ward, the Filipino nurse who had treated me smiled and said, “Thank you for being so calm.” I finally left the hospital ten hours after I arrived, well past 7pm.

This incident had jolted my memory again; it had helped me to realign my emotional attitude, but it took something of great subtlety to reinvigorate my momentum.

Ida

The day before my third infusion, I had celebrated my sixty-ninth birthday for which Alex, one of my young community members, had given me a dvd of Pawel Pawlikowski’s film, Ida. Several weeks later we watched it together. It is one of the most beautiful films I have ever seen and I can think of no other that has affected me so positively apart from Tarkovsky’s Stalker. For weeks on end my mind had been preoccupied with old age (fatigue), sickness (chemo) and death. But Ida highlighted the vision of Siddhartha’s fourth sight of the homeless wanderer in a surprising and uplifting way.

The film is set in Poland perhaps twenty years after the end of the Second World War. Anna/Ida is a novice Catholic nun whose Jewish origins are suddenly revealed to her by her last surviving relative. Her new-found identity precipitates a sequence of events that have a profound impact upon her, but she meets each new challenge head on and rises above them all.

Ida-small

For me, Ida embodied the spirit of Going Forth and I could see many parallels in the experience of the eponymous heroine with my own, enabling me to readily identify with her. I was reminded quite dramatically of my own higher purpose, which perhaps I had been in danger of forgetting. It is so easy to become self-preoccupied when you are confronted day after day by a succession of minor ailments such as those thrown up by chemotherapy. Although I had vigorously resisted any tendency in that direction, I needed Ida, at the time that I watched it, to stiffen my resolve. But the film did more than that; it renewed, perhaps deepened, my own inspiration.

Radio school

Tragedy and comedy are the stuff of life and after the sublime tragedy of Ida I was next thrust into the comedy of a radiotherapy seminar, which certainly had its ridiculous moments. There were about twenty patients present, some with their partners. Everyone except me had undergone prostatectomy and they would only receive four weeks of radiotherapy — half my dose. I was the only chemo patient.

A urology nurse introduced the seminar which would explore four principal topics. First to speak was Rick, a young radiographer, who was later often on the team treating me. I took an immediate liking to him. He emphasised that we must all start training now as the bladder needed to be full at the time of treatment. “It’s no use coming if you can only hold 200 millilitres; that won’t be enough and we won’t be able to treat you.” The target was 350.

After Rick, the physio took over. The presence of women did not inhibit his slightly suggestive demonstration of how to identify our bladder muscles together with the exercises necessary to strengthen them. Discourses on the general importance of exercise and good diet, neither of which taught me anything I didn’t already know, followed.

I was beginning to yawn until at last we arrived at the entertainment.

Erectile dysfunction

Apparently, James was to have been present to explain and demonstrate a vital piece of equipment but, unfortunately, he had not been able to come. The urology nurse looked distinctly uncomfortable as she explained this to us. As his stand-in, she was caught between a rock and a hard place and my flagging interest was now suddenly aroused.

“Well… the important thing to remember is… use it or lose it, because… well, if you don’t there is the danger of permanent loss of function… and it may shrink. After all it really is only a muscle and, like any muscle, lack of exercise will result in wastage.”

I could easily imagine the alarm hidden behind the impenetrable faces of many of the men present, some of whom, I suspect, were suffering from involuntary lack of exercise of a possibly shrinking muscle.

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We don’t actually have a pump here at the moment…

Nurse continued at a rapid pace perhaps in an attempt to get the ordeal over as swiftly as possible, “Fortunately, we can help you… I mean, there are things we can give you. James should have been here to demonstrate how to use the pump… but we don’t actually have a pump here at the moment so… well, if you do have any questions, do ask.” (Clearly, Nurse was not a position to demonstrate anything. I wonder how James would have gone about it.)

There was an uneasy silence until one brave soul spoke up.

“I have a question.” Nurse smiled encouragingly, if somewhat uncertainly. “I’ve tried the pump, but it didn’t work.” Nurse was looking increasingly unsure of herself and, obviously at a loss for words, glanced desperately in the direction of her male colleagues. The physio gallantly sprang up.

“What happened?” he demanded firmly, yet sympathetically.

“Well, I read the instructions and… had a go, but it was really uncomfortable.”

“Ah, yes. You see, it’s really important that you get a vacuum. It draws the blood into the, er… muscle. You just need to persist. Talk to me afterwards. Most men manage to get stimulated eventually. Any more questions?” No, just blank looks — except I had one for Nurse, which I was sure would be of no interest to anyone else and which I sincerely hoped would cause her no further embarrassment.

When the session had finished, I approached her and asked, “Apart from shrinkage and loss of function are there any other medical concerns about…  not exercising?”

“Oh no, you don’t have to,” and then with an inquisitive look, “but most men seem to want to.” I explained that I was a Buddhist and that for a period of twelve years, when I was much younger, I didn’t. And there had been no shrinkage, I might have added, but perhaps that might have pushed my credibility a little too far.

I approached the physio as I had an appointment with him.

“What’s the problem.”

“I need help in managing fatigue.”

“That’s unusual.”

“I thought it was very common.”

“Not really.” He quickly scrutinised me. “How do you exercise?”, he asked somewhat suspiciously, looking at me like a detective about to trap a criminal. I told the truth and he laughed. “I see the problem. Most people don’t even notice the fatigue because they don’t exercise very much, if at all.”

Dancing the night away

Chemotherapy seems to exacerbate existing weaknesses and conditions. Restless legs syndrome (RLS), involuntary movement of the legs — especially at night — was one of mine. The problem is that it can severely interrupt sleep. For me, RLS had previously tended to be mild and occasional; under chemo it became chronic and at times almost constant. Having mentioned this to Joanna, during one acupuncture session she concentrated specifically on treating it.

I was lying on the treatment table with needles in my legs and elsewhere when suddenly my legs began to go and they would not stop. Looking down at them, although they were clearly not up for the cancan they seemed to be attempting an Irish jig. I called out to Joanna who was in an adjacent room and she returned immediately and worked hard to calm them down.

“I’ve never seen anything like it,” she said, with a hint of suppressed amusement in her expression; me neither —  it was the worst it had ever been. “Ask the oncologist if there’s anything they can give you,” Joanna suggested.

Indian tonic

“You need quinine sulphate,” said the registrar the following day, “but you are on so many drugs at the moment, I’m reluctant to prescribe anymore. Try Indian tonic water.” Of course! I mentioned that my swimming coach used to recommend drinking it just before a training session to guard against cramps as it contains quinine.

“Oh, I used to love swimming,” she said wistfully. I noticed the fitness tracker on her wrist and asked her about it. “My husband bought it for me,” she explained.

“What do you do for fitness now?”

“Nothing”, she replied. “I know I ought to.”

“Like so many of my medical friends. …You would like to?”

“Oh yes, but it’s so difficult getting started.”

“Just go to the pool!”

You realise that you will become infertile?

A few weeks later, she began our consultation with a long preamble about radiotherapy, speaking rapidly’, like an actor racing through lines to himself minutes before the curtain rises, as she explained likely side effects and post treatment problems. This was necessary before I could sign the consent form.

“You realise that you will become infertile?”

“I’m almost 70,” I replied, wearily bracing myself for the erection question.

“Yes, but you see, I met with a man in his eighties a few months ago, omitted to tell him and, when he found out later, he was deeply upset.”

“You’re kidding!”

“Unfortunately, not.”

“How absurd,” I said, taking her smile as silent concord.

“…And you will also become impotent.” No surprise. Surreal, though, to hear these words in my seventieth year, enunciated in such a matter-of-fact way, by this beautiful young woman.

I gave my usual response then signed away my genital prowess for this life without a twinge of regret.

And I can’t be bothered with pumps. Such items may bring solace to a younger man, but at my age, the very idea is ridiculous and prompts inner laughter which occasionally breaks the sound barrier into irrepressible mirth.

Cezanne to the rescue

A mere moment of inspiration can sustain you through the most difficult times. Often, they come unbidden, but you may also seek them as I did shortly after signing that document seemingly so fatal to my manly pride. I had gone to the Courtauld Gallery where I spent most of my time in a room in which a large painting by Manet hangs amid several by Cezanne. I absorbed myself in the Cezannes — the same paintings I had first enjoyed and learned to love fifty years ago when I was a student; but now I saw them afresh.

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I ignored the Manet until finally, stepping back to look at the whole wall, I could do so no longer. It is perhaps one of the best-known paintings in the collection, but its sensuous portrayal of a woman behind a bar at the Folies Bergere seemed so crude and out of place in Cezanne’s company that I found it painful to look at.

Only then did I begin to see why some regard Cezanne to have been the greatest painter of modern times. His paintings seemed bursting with a hidden life that sprang off the wall into my mind and expanded consciousness. Perhaps only my current precarious state of health could have induced such heightened perception and gift me yet another precious moment.

“Ask me ornitholigist!”

The cyberattack struck on the very day I consented to radiotherapy, just a few days before my fifth infusion. The hospital was one of the most severely affected in the country and so consequently, again, there was doubt about whether I would get my treatment on time. There were confusing messages in the media and I received seemingly contradictory information from the hospital itself.

I was told not to take the steroid necessary before an infusion as I could be given it intravenously, should things work out, which they did. I had phoned the chemo ward on the day of my appointment and recognised the voice and accent of the Spanish nurse. She phoned back forty minutes later to confirm that I was on the list of the few to be treated and that I could go in at any time. However, there would be a delay of up to four hours as new blood tests would have to be taken and analysed before we could be given our medication.

When I reached the treatment room, Teddy was already there complaining about the delay on test results which he could not comprehend. New tests were unnecessary in his case, anyway, he explained. “Ask me ornitholigist,” he demanded of the doctor who was trying to clear us all for treatment, “She’s seen me results and said they were okay.” But the ‘ornitholigist’ was not answering her phone. (Tweeting, perhaps?)

The doctor came over to me, “Have you taken your steroids?”

“No,” I replied. He frowned, but I explained why and later a Chinese nurse administered the usual rather high dose by the drip. However, I still had to take an additional half dose orally.

“You realise you won’t sleep tonight,” the nurse said. I laughed.

“I can’t even sleep with the normal dose!”

“It’s me nature.”

Meanwhile, Teddy was getting increasingly restless and unreasonable. “I can’t wait four hours for them results. I’ve got an appointment this afternoon.” Several nurses, the ward sister included, explained to him that it was beyond their control, but the more they reasoned with him the angrier he became, insisting at frequent intervals that they should check for his results. After two and a half hours he got them and I was perhaps the unwitting beneficiary of his badgering as my results came through at the same time. At last he calmed down as a nurse administered his medication.

Again, he was ashamed, offered copious apologies and then excused himself: “I can’t help it; it’s me nature.” And once more the comedian emerged.

The nurse gave him his supplementary medication for the coming weeks. “Do you need any anti-sickness pills,” she asked, offering him some.

“No, I don’t get sickness. Keep ‘em. Save the NHS fifty-five million quid.” She laughed, but a little later there was another problem. He was short, by two pills, of another medication that he really did need. At once he was anxious and very quickly he was demanding the missing pills. Despite being told several times that they would be provided before he left the hospital, he insisted repeatedly that they get them immediately, working himself into a terrible passion as he did so. Consequently, he ended up with twice the amount of medication he needed.

This jolted him out of his madness and once more he was overcome with remorse when he realised what he had done. Yet again he offered his excuse. “I’m sorry, I just can’t help it. I’ve always been like this. It’s me nature.”

“I disagree,” I said, from the opposite side of the room, “you can change, but you’ve got to want to do so.” Suddenly everyone’s eyes were on me. As he had just been released from his drip, he came over to me.

“How is that possible?”, he asked.

“It’s what I’ve been trying to do all my life,” I replied.

“Oh yeah, I remember… You’re a Muslim, aren’t you?”

“Buddhist,” I said as a smile escaped me; we then talked further as his mood softened.

“I greatly admire what you’ve done, but I made all the wrong choices in life.” His last few words succinctly summarising not just the tragedy of his own life, but of human existence itself. Very few see, feel or grope their way to the right choices; fewer still make them.

A few minutes later, after he had left, the nurses gathered together talking in subdued tones for the first time since Teddy’s outburst had displaced the natural hubbub of the room with a wary silence. By this time, I had been discharged and so I went over to them. “You do realise that you are much appreciated here, don’t you?”

They smiled at my words, but then the Chinese nurse, who had had to bear the brunt of Teddy’s anger, asked me “Why didn’t you speak earlier?” Initially, I was taken aback and cannot recall whether or not I eventually did say what I certainly thought later.

Although she understandably found Teddy extremely difficult, I felt that she had dealt with his anger admirably well, but more importantly I had been waiting for the right moment to speak. I had not wanted to risk stirring his anger further by acting in a way which, in the heat of the moment, he might have perceived as interference and which in turn could have driven him to fury.

A blessing in the guise of an illness

When I returned home, Gus was in the Kitchen. “I got my fifth chemo!”, I said, delighted at my good fortune, so grateful to have been treated. He laughed saying he could think of nobody else who would be so pleased about that. I could understand, yet I also wondered, why.

Is chemo not a blessing in the guise of an illness? At the very least, is it not a trial of human resources? How can you be sure of your ‘insight’ or tranquillity if life is relatively easy? Is it possible to be confident in your Dharma practice if you cannot withstand and rise above mere adversity? Finally, can you truly know yourself if you are never severely tested? I had been tried and tested and my weaknesses had been exposed. Should I not therefore be pleased to have been given this wonderful opportunity and to welcome it, as I try to do, with my customary enthusiasm and optimism?

Riding the fifth

The nurse had been right; I could not sleep that night. Dexamethasone had catapulted my mind into the stratosphere. I was in and out of bed for half the night until I could no longer be bothered to get back into it again. I did not feel a hint of tiredness until the following evening.

When my body and mind were finally reunited, I noticed something very strange. The horrible metallic taste that chemo leaves in your mouth had gone a stage further. I had completely lost my sense of taste and my appetite had disappeared with it. It was with great difficulty that I motivated myself to eat as it was such an unpleasant experience. Eating food that you cannot taste seemed a pointless exercise. Why would you eat if it gave you no pleasure? I had never realised just how much my sense of taste drove my appetite. My empty stomach was insufficient in itself to move me to eat. Fortunately, my loss was fleeting; after a couple of days my taste returned and I could eat happily once more.

However, a week later things were seemingly taking a bigger downturn. The strength in my legs was not returning as I had come to expect and other chemo side effects were much more pronounced and painful. Most alarming of all, I was beginning to weary of the whole process of chemotherapy. I had been immersed in it now for over three months. Was my spirit about to break, finally?

I confessed my weariness to a few friends who thought this trough in my spirits perfectly understandable. Perhaps it was, but I was still dissatisfied with myself and became convinced that there must be some unacknowledged factor at work. Mulling it over, I realised that I had had no acupuncture for almost two weeks, as both Joanna and Jessica were away. Luckily, I had an appointment with Jessica the following day and she restored the energy to my legs. Now I had no doubt just how much I owed to the dedication of my two most kind and generous acupuncturists.

The show must go on

Two weeks into my fifth cycle I was due to speak at the LBC’s Dharma night, but the week before I had been plagued by chronic sleeplessness, caused by RLS which, in turn, had been exacerbated by chemotherapy. I felt exhausted.

Just before I was due to speak, one of my friends looked at me concernedly and asked, “Are you sure you can do this?”

“Of course. I just need to get started, but it won’t be one of my best.”

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Vimalakirti

My topic was the chapter from the Vimalakirti Nirdesa[ii] in which Manjusri asks about Vimalakirti’s sickness. How ironical; I had not chosen it, but, perhaps inevitably, I spent a good deal of time talking about my own illness, placing it firmly in a Dharmic context. https://www.youtube.com/watch?v=1ui3h5VJyjE

The talk was appreciated perhaps more for effort than content. My theatre conditioning runs deep. I had been determined to give that talk even if I had had to do so lying on a couch like Vimalakirti. The idea that ‘the show must go on’, regardless of personal circumstances, was still deeply embedded in theatre culture when I was working.

Perhaps for this reason, I cannot recall ever having excused myself from giving a Dharma talk through ill health, though I have often stood in for others.

To my shame, however, I did once cancel a trip to India, decades ago, for health reasons which, in hindsight, were rather obviously psychosomatically induced. (Foolish, deluded man! I had fallen in love and did not wish to be separated from my new-found beloved.) Bhante [my teacher] berated my friends for being too soft with me. He was right; embarrassingly, my severe stomach cramps disappeared almost overnight and I felt deeply ashamed. I swore that I would never fall victim so easily to self-deception again.

The cosmic joke

As chemotherapy proceeded, I found myself increasingly prone to laughter — the soft, chuckling variety not the violent, belly-shaking kind — and I wondered why. Life seemed to be becoming more and more amusing. Why had I never noticed before that life itself is such a comedy? Why had it taken me so long to finally understand the huge cosmic joke in which we all participate?

I found myself laughing at small things: human foibles — both my own and those of others — and even those of animals. The squirrel at prayer while greedily munching its food could divert me as much as the gulls and geese battling for bits of bread cast into the lake in Victoria Park.

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Perhaps inevitably, given my ill-health, the absurdity and vanity of worldly endeavour struck me with greater force. My laughter was never tinged with contempt, but was often accompanied by poignancy. How sad that things should be the way that they are and that so often we fail to see beyond them. There is no comedy without tragedy.

Probably because of the cancer, I feel the tragedy and comedy of my own life with increasing acuity; the one reminds me of the seriousness of the human predicament, the other lightens its burden; both are tinged with poignancy wherein lies their transcendent beauty and both can give rise to wisdom and compassion when keenly observed.

Chemotherapy does not always work

I was due for an MRI scan later on the same day that I met with the registrar for the routine consultation a few days before my final infusion. “Presumably the scan will show whether or not the chemo has shrunk my tumour.”

“Oh, it will have done something! Otherwise, why put yourself through all that?” Indeed. The scan would enable the radiotherapy to be precisely targeted.

There was nothing else to discuss and so, as we had several minutes to spare, I advised her how to establish a regular exercise routine, warning that I would be quizzing her as to whether or not she had succeeded when next we met.

“Good. That will give me an extra incentive to actually do something.”

“Perhaps involve your husband too,” I added.

“Yes!” she responded seemingly delighted at the idea.

When I finally left the hospital, I could not but help wonder what my latest scan would reveal, as, despite my young friend’s optimism, I was aware that chemotherapy does not always work. But it was pointless to speculate and I did not want such thoughts to distract me, so I put it out of my mind. I would find out in due course.

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

[i] Shantideva was great 8th-century Indian Buddhist poet, scholar and teacher.

[ii] A Mahayana Buddhist text which is very popular in China and Japan. Manjusri is an archetypal Bodhisattva symbolic of Transcendental Wisdom. Vimalakirti, in context, is a lay follower of the Buddha who is renowned for his wisdom.

Can-can Cancer Dancer 1 — Diagnosis

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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.

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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

 

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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.