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.
“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
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.
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.
“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
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…
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?”
“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.
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.
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…”
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?”
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.”
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.
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.