“The third week of the cycle is your recovery week,” a chemo nurse had explained to me in the early days of my treatment when I was still a chemo-innocent. “We like to give you a short break so that your system can recover a little before you start the next round.” Pausing, she chuckled before continuing in a tone of mock cruelty, “and then we hit you hard again!”
I was determined to take full advantage of these weeks when I had a bit more energy and could lead a more normal life. Just before my sixth infusion, making the most of my few days of freedom, I attended a concert featuring a late Beethoven quartet and left with a lightness in my step which belied the fatigue still weighing heavily within my legs.
The following evening I went back to the Old Red Lion Theatre in Islington, where I had performed the previous year in a new play directed by Gus, with whom I live. When I arrived, I was warmly greeted by Clive, the artistic director who almost immediately told me that he would remember my performance in Further.Still. as long as he lived, which astonished me.
Should he still recall my performance fifty years hence, I swear that the stupa confining my ashes, unable to resist the unbridled vanity swelling within, will shatter into a thousand pieces, blasting to the heavens any lingering hope of stream entry[i] that might yet be harboured by my dusty remains.
I was deeply touched. Wondering how my performance might have left such a powerful impression upon him prompted me to reflect.
The blood that had foreshadowed my cancer diagnosis had been flushed out with my urine while I had been rehearsing. It had haunted my mind then, its significance lurking on the periphery of consciousness like a watchful thief waiting for the right moment to abscond with my health or, better still, my life.
I had not then been willing to face the seriousness of its intent and this must have influenced what was working out in rehearsal, eventually finding subtle expression in performance. There was an uncanny congruence in my immediate experience and that of the character I was playing, although I did not understand this at the time. Was it my swansong?
It’s about porn addiction
Enduring the chemo limbo, though I was often alone, I also had many visitors including several friends from beyond London and I was very pleased to see every one of them. All of those meetings meant a lot to me and I regard them as vital elements in the extraordinarily supportive conditions which have borne me up and helped to carry me beyond the concerns of my ailing body.
I was also visited by Debbie Korley and Vinta Morgan, my fellow cast members in Further.Still..
I was truly moved that they had made the effort to come. Working together with Gus and two such seasoned actors had been a sheer pleasure to me after such a long break [forty-three years]. Better still, again I have friends whose work I can go and see; that always makes theatre so much more enjoyable.
Debbie and I had had to work particularly closely together. As I never do things by halves, and because she is such a gifted and hard-working actress, we established a strong connection. She was currently rehearsing a play for the Blue Room at the Royal Festival Hall.
“I’ll go and see it,” I said.
“You won’t like it,” she warned.
“That won’t stop me.”
“It’s about porn addiction, Devamitra.”
“Pity… But that won’t put me off!”
Sometimes they do get the results wrong
Two days after my evening at the Red Lion, I was back at the hospital. I had looked forward to June 5th as if it were my birthday. It was my last morning on the chemo ward — the beginning of the end of chemotherapy. However, as soon as I had sat down on the treatment chair, I was told that it may not be possible to treat me.
This time the culprit was not the computer system, or its hackers, but my own body. A test, taken a few days before, indicated that my white blood cell count was far too low. A new test would have to be taken and unless there was a significant increase they would have to send me home.
Shortly afterwards, Teddy arrived. Overcome by embarrassment, as he recalled his previous visit, he was apologising to all the staff in sight.
“Don’t worry I’m in a good mood today, I promise yer. I won’t give yer any problems.”
I glanced at him then at the nurses. “I’ll make sure he doesn’t,” I said. Teddy laughed.
“Oh yeah. He won’t give yer no problems, either. He’s always very calm, he is.” Then he was put to the test. He too needed another blood test before they could proceed, but this time, he was as good as his word and made no complaint.
Astonishingly, my white cell count was now normal for the first time since I started chemo! Previously it had always been low, yet sufficient. The nurse seemed surprised by this latest result — and I certainly was.
And so, I received my final infusion and left the ward for the last time a very happy man, wishing well to the nurses and to Teddy. Sure, I had the final storm to ride, but that could not daunt me because I would not be going back for more.
But what could have so miraculously increased my white blood cells? The first test had been taken on the Thursday, but two days later I had acupuncture and I remember Joanna saying that she had wanted to prioritise boosting my immune system. Was this the explanation?
“Probably,” she said when I saw her the following day, “but, you know, sometimes they do get the results wrong,” she continued rather modestly, her mild scepticism of Western medicine revealing itself momentarily from behind her wry smile.
Overpowering the rank refuse
The chemo ward was now behind me, but the chemo itself was not and I would still be under its influence for four more weeks.
In the meantime, it was wreaking its usual havoc, especially inside my overburdened legs and my rotting nails, the latter tinged with an odious smell from the discarded tissue trapped beneath them. No matter how thoroughly I tried to clean them their mildly faecal odour was as persistent as Lady Macbeth’s damned spot. I could not rid myself of it, but… why should I try? Is it not the mark of death — with which we are all born and which cannot be washed away — made manifest? Was it not of benefit to me, this faint, yet constant reminder not just of death, but of decay?
As the neuropathy afflicting my fingers intensified, attempting to pick up coins accidentally dropped to the floor became a major enterprise, invariably ending in failure, as my fingertips lacked grip. Best not to drop them in the first place, but this was not entirely a matter of unmindfulness; just getting hold of them properly inside my pocket required a skill that had deserted me and it could also be painful.
But worst of all, my restless legs were more hyperactive than ever — sometimes for hours without cease, especially at night. By 4am, if I was lucky, they would calm down and I could once more sink intermittently into delicious oblivion for an hour or two before it was time to rise.
Coping with insomnia is always difficult, but I am well-practised; surrender is the only answer. But there are also perks.
One Sunday morning, rising at five, abandoning any further attempt at sleep, I went out onto the terrace adjacent to my room to get some fresh air. The morning chill enlivened my senses as I took in the surrounding scene. From behind a tower block, the sun was slowly revealing his splendour to a cloudless sky. Along a neighbouring roof, a solitary crow sauntered with not quite his usual swagger and sway, still caught perhaps in corvine dreams of corvine beauty. King of his television aerial, atop its highest point, a goldfinch released his ever-rising trill, proclaiming his faith to the Feathered Almighty on high — it was the Lord’s Day, after all. Rising from the stillness below, overpowering the rank refuse nearby, the sweetest jessamine suffused the air and wafted me higher still.
Despite my sleeplessness and my errant brain, I was able to write most days, sometimes for several hours. My capacity for immediate response, so necessary for fluid conversation, was significantly retarded by chemo brain; my communication sometimes disjointed and a little haphazard. But writing is much more reflective. You can take all the time and space you require — two commodities I had in excess. Better still, at times my mind was uncommonly lucid, my perception sharper than ever.
Writing became a great solace to me, but it was also fun. Laughing at my predicament and my foibles unburdens me — especially if others laugh along with me; but, if it could help others, that would give it a value far transcending the diversion it brought me.
I am no more scared of cancer than I am of life
Several friends who had spoken or written to me had mentioned their ‘cancer scares’, prompting me to reflect on what this idea might imply. I had an instinctive aversion to it and needed to understand why.
A few years ago, on a long solitary retreat, I strained an intercostal muscle just above my heart. I understood that perfectly well, but my unconscious fears quickly attached themselves to the idea that I had a heart problem. They haunted me with increasing intensity for several weeks until finally I broke free of them. That was a heart scare, I suppose; but it had nothing to do with my heart.
When my blood had fled with my urine, I understood that it might have serious health implications and sought immediate medical advice, but, even when I was told that the blood could have come from a tumour, I did not have a ‘cancer scare’— that would have obstructed or distorted my immediate experience.
Consequently, when I was finally diagnosed, cancer was not a ‘scare’ but the reality I faced. It did not scare me; I am no more scared of cancer than I am of life. It sobered me and concentrated my mind, enabling me to bring a Dharmic perspective to bear upon it at once. Had I allowed it to scare me, I may have wanted to push it away, making it more difficult to face and ultimately more painful.
Thinking in terms of ‘cancer scares’ is just one symptom of the widespread, disproportionate fear of cancer that afflicts our society. If you have a ‘cancer scare’ you are not dealing with cancer, but engaging with an abstraction to which your unconscious fears have become attached.
When my father was dying of an enlarged heart, his cardiologist insisted that, in terms of health, people should most fear heart disease, not cancer. Much can be done to treat cancer, very little for heart failure.
But the tragedy of human life is much greater than cancer, or any other health issue. Our fears need a broader and deeper base. I do not fear cancer, but I am wary of falling into unskilful mental states: I fear my own potential negative reaction to cancer. That is far more serious than the cancer itself.
The pump demonstration
Before I could start radiotherapy, I had to go to the hospital for a dummy run so that at my first session three weeks later, things could run to schedule. Shortly after arriving, I was greeted by Rick, the bright young radiographer from the seminar, who then took me into a consulting room and explained what was about to happen. But first, he asked if I had any feedback on the seminar as these events had only recently been introduced.
“Apart from your presentation, I learnt nothing new, frankly,” I said. “I doubt I would have relished a demonstration of the erectile pump, had that happened,” I continued, unable to hide my amusement at the idea, “but I also wondered how the women present might have found it.”
“Well, there was a demonstration at the next one,” he said. “James was very good, he just came in and got on with it straight away, no messing.” He paused, unable to completely stifle a grin, “Must admit, some of the women did look rather shocked when they left.”
Know your enema
And then down to business.
“Did you bring an enema?”
“You’d be surprised how many don’t.”
“I wouldn’t! …But there’s no mention of it in the letter.”
“Yeah. We need to fix that. Now, first thing we have to do is get you to evacuate your bowels. So, go to the toilet, use the enema, squeeze it all in and, if nothing happens after fifteen minutes, have a go anyway.”
“Then empty your bladder, go back to the waiting room and drink five cups of water in the cups provided so we know you’ve drunk the right amount. Okay? Then we’ll call you through after twenty-five minutes and check your bladder.”
“We’ve come for radiotherapy”
I did as bidden then sat down in the waiting room opposite a woman of my own age who was obviously very anxious about her husband, whom she had accompanied. I could imagine they had been together all their adult lives, but now their shared life was threatened by cancer.
“We’ve come for radiotherapy,” she explained.
“Both of you?”, I asked, slightly puzzled.
“No. Just him. …We’re already on immunotherapy.”
“I see.” I paused, not quite sure what to say next. “Well, I hope it goes well.” She smiled at me rather sadly.
A little later, her husband returned and they left as wrapped up in one another as perhaps they have been all their lives. How would she cope without him, if he died? I doubted that she would have the resources to separate her own life from his. But I hope I am wrong.
“You a runner?”
Eventually I was called by one of the radiographers. “Devamitra?” I nodded, pleased she had got my name right. “We’re ready for you now.” But unfortunately, I was not ready for them as there was insufficient water in my bladder and so I had to return to the waiting room for a further twenty minutes.
This time, I found myself opposite a young woman who had obviously been observing me quite closely before she spoke. “You a runner?”, she asked, tentatively.
“No. Dodgy knees… Swimmer and cyclist.”
“I knew you did something.”
“Well you carry so much sports equipment with you.”
“Trainers, fitness tracker… But the real give-away is the SIS water bottle.”
“And you’re very trim.” I was flattered.
“You’re a runner.”
“Here on your own?”
“Yeah. My husband is with the kids.”
She looked so fit, healthy and full of life, but, like me, she must have cancer. “I’ve just finished chemo,” I volunteered.
“Me too. When?”
“Then you’re still in it.”
“How many rounds?”
“They gave me eight.”
“That’s a lot.”
We lapsed into silence and smiled at each other.
She was then called by one of the radiographers and I was left alone to reflect. I had been strongly affected by our brief meeting and the potential tragedy haunting someone so young — and her family.
A few minutes later I was called again. This time my bladder was sufficiently full to proceed with the CT scan which was necessary to set up my treatment.
“Why didn’t they offer you surgery?”
Several of my fellow Order members have recently been diagnosed with prostate cancer, one of whom came to see me just as I was emerging from chemo. He had finished chemo a few months previously and his hair had grown back already; his nails, too. Naturally we compared notes and there was much that we had in common, but we spent relatively little time talking about chemo and the cancer it was targeting.
I was struck by the mutual shift in perspective that this life-threatening disease had effected. There is almost a sense of relief about it. You don’t have to take life that seriously anymore because suddenly everything is perceived as so much more precarious. Almost paradoxically, at least in my case, you can relax in a much deeper way, which is really quite wonderful, though difficult to sustain.
Everyone I know who has had prostate cancer, unless it was at a very early stage, had undergone prostatectomy, but it had not been offered to me and I never bothered to enquire why. But that did not stop my friends from asking me.
“Why didn’t they offer you surgery?” asked one of my medical friends, incredulously.
I suppose it was a question I did not want to consider, but in any case, I did not feel I needed an answer. When my friends suggested I ask my consultant, I thought that perhaps I should; but then I would forget about it.
Eventually, just as I was emerging from chemo, someone wrote to me who perhaps had a good reason for asking other than concern for my wellbeing and so I decided to respond, but all I could do was surmise — although of course, on a certain level, I had understood all along.
“Oh — I didn’t realise that your tumour had spread beyond the prostate! Now I understand! Crossed fingers!!!” I appreciated the kindly, well-wishing sentiment; but crossed fingers? No. I don’t want crossed fingers. Milarepa forever warns against the terrible twins of hope and fear and I was determined not to fall prey to either.
The mirror’s reflection and the pesky commuters
Before chemo people would always say that I looked much younger than my actual years, but now as I look at my reflection in the mirror, after the full course of chemo, a man significantly older than his actual years stares back. It is not just the absence of hair and the diminished eyebrows, there is a parchment-like quality to the facial skin; his eyes seem more deeply sunken into their sockets; his ravaged face more in the grip of proliferating wrinkles, while the muscles surrounding his lips tauten slightly into the mouth, prophetic of the corpse to come. As I continued to gaze, Shakespeare’s famous lines came back to me.
In me thou see’st the glowing of such fire, / That on the ashes of his youth doth lie, / As the death-bed, whereon it must expire, / Consumed with that which it was nourish’d by.[ii]
The moment I got back on my bike I was shocked. I had not cycled since just before my prostate biopsy seven months earlier, but now I could hardly pedal. Cycling a mere mile-and-a-half circuit exhausted me; swimming was equally draining. Yet a week later, I was cycling with ease, gliding through the rushing air beneath avenues of trees, in and out of the early morning sun, relishing the shifting warmth and cool caressing my bare arms and legs. Who cares if others could easily overtake me? Just give me a few more weeks and I’ll show those pesky commuters.
Feeling energy thrill through my legs once more seemed a huge turning point. For more than four months, I had been legless — not from alcohol, but weighed down with chemo. I had dragged my reluctant limbs from place to place as if a hex had transformed them into marble stilts which might suddenly morph into a febrile tissue barely capable of keeping me upright, before shifting again into their ceaseless nocturnal frenzy. But now that my legs were slowly reviving and their restlessness diminishing, I felt particularly buoyant, even complacent; I was forgetting again. It was time for a reality check.
My phone rang. It was a radiographer. There was an issue with my intestine, which was problematic for the radiotherapy. Consequently, my consultant had ordered a further scan and postponed my treatment. In the meantime, could I go to the hospital as soon as possible to collect a prescription? I was unable to go that afternoon, as I had an acupuncture appointment.
I did not quite understand the nature of the problem, even though it was explained to me — something to do with my small intestine being overfull. To me that suggested some kind of blockage. And immediately I was back on the edge — that uncomfortable place, so beneficial, yet so unappealing, where I must learn to stand fast.
“Have you found another tumour?” I asked the radiographer as soon as we sat down together the following morning. She laughed.
“Nothing so serious!”
“It was the first thing that popped into my mind.”
Such is the psychology of cancer, certainly as it affects me. Having one tumour, I am constantly alert to the possibility of more.
“No. The problem is that your intestine is very gaseous,” she continued. (Could it be those accursed broccoli sprouts… or perhaps all the soya?) “This means that we can’t get it sufficiently clear of your prostate to give you the full treatment.” (But I want the full treatment.) “If we did, the side effects would be very severe and, obviously, we don’t want that.” (Hmm, I suppose not.) “So, starting today, we want you to take a course of laxatives to try to dispel the gas.” (Good; let it be blasted to the end of the universe!)
“My acupuncturist has already done some work on my intestine,” I added, immediately regretting it.
“Where did she put the needles?” she asked, frowning. I told her. “You must not have any needles anywhere near the pelvis, when you are being treated,” she insisted.
“I’m sure my acupuncturist would not do that,” I replied. Even so, she would need to check with my consultant about the acupuncture. Next, I was told the results of my recent MRI scan, as I had asked for them when speaking to her over the phone the previous day.
“The swelling has completely disappeared from the lymph nodes,” she informed me, “and the prostate lesion has shrunk significantly.” I felt hugely relieved, (thus stepping back again from the edge, forgetting… How quickly it happens).
“So, the chemo has done its job.”
“Yes,” she smiled, “It’s a very good outcome.” How ironic, I had gone to the hospital braced for the worst, but would leave with mostly good news; better that way around than the other. Unfortunately, however, my consultant was insisting that there must be no acupuncture during radiotherapy, as “acupuncture changes the way the body functions.”
A ghost, a bad omen, a man on the brink?
I was then given a prescription for the laxatives which I took immediately to the hospital pharmacy then sat down to wait.
“Hello Devamitra.” I turned to see someone I knew from the LBC. “What are you here for?”
I explained. “And you?”
“I’ve just seen my consultant. My tumour’s been downgraded from T2 to T1.” He looked very relieved.
“T3b.” The expression on his face rapidly changed. His eyes seemed to retreat from me as if he was trying to get away. What lay behind them; fear, embarrassment, aversion, pity? What were they seeing; a ghost, a bad omen, a man on the brink? Having pushed me back on to the edge, he said goodbye.
Of course, I could have compensated with a little inner kudos getting all snottily, mentally uppity. (“T1! Call that a cancer?”) Instead, as I waited for my medication, I recalled my own reaction, months before, to Jayamitra who had passed the point of no return from stage three to stage four. So far, I had remained on the right side of stage four, but I try not to forget that others, despite treatment, had been at stage three only for some of their bad cells to migrate through their bones, or lymphatic system, and thrive elsewhere, with murderous intent, as stage four.
Eye of the needle
“But I’ve treated hundreds of people on radiotherapy; most find it really helps with fatigue. It’s never been an issue,” Jessica maintained when I told her the following day that the acupuncture had to stop. Clearly, I needed to speak directly with the consultant, but first I sought advice from two friends, both senior doctors. Although neither could speak authoritatively, they were not aware of any conflict with the treatments.
Several days later, just as I was about to be needled yet again, my consultant phoned. She relented about the acupuncture, but insisted that there must be no needles from my navel down to my mid-thighs, both front and back, during radiotherapy. It was to do with rounding up free radicals, apparently (a totalitarian purge, perhaps). This left me much happier, though no wiser.
She needed to see the result of my next scan before she could re-plan my treatment. Of particular concern were the the lymph nodes, which needed to be hit hard, but that would not be possible if the gas persisted. The intestine must be well clear of the beam. This was normally achieved by a sufficiently full bladder pushing it out of the way, but the gas was preventing that.
It would be at least three more weeks before I could be placed at the mercy of that powerful radio beam. In the meantime, Jessica set to work — to blow the gas away.
“Phlegm!” she said.
“In my intestine?” I asked doubtfully. She smiled inscrutably, her Chinese conditioning coming to the fore.
“Two kinds. Visible. Invisible.”
“This is invisible phlegm?” I asked, yet more sceptical.
“We can get rid of it.” As she rather charmingly put it, “When your stools can pass through the eye of a needle, you will know it has gone.” Six days later, after having consumed large quantities of organic vitamin C and ‘Oxytech’, the phlegm invisibly passed away.
Four weeks after my final infusion, I had celebrated my freedom from chemo with a talk on Vajrapani[iii] (principally about his wrathful form) to the LBC Dharma night class. And it really was a celebration; I could have danced all night in his aureole of flames. I relished every moment.
But how foolish of me to tempt fate so blatantly; Vajrapani cast his thunderbolt to rein in my intoxication. Though I had kissed goodbye to chemo, like a jealous lover, it would not let me go that easily and it gave me one last, nasty surprise — another lesion, this time much bigger, on that most delicate part of the male anatomy. It bled and it hurt. Huh! No more parting kisses for chemo.
Any names in this blog attributed to patients or hospital staff are fictitious.
[i] Stream entry is the point at which transcendental insight — seeing things as they really are — arises, according to Buddhist tradition. This is the first goal for all Buddhist practitioners.
[ii] Shakespeare, Sonnet 73
[iii] The archetypal Bodhisattva symbolic of spiritual power.