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Making the most of adversity: Devamitra turns cancer into his spiritual friend
Reposted from the London Buddhist Centre’s blog, Devamitra writes….
“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 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 referred me for ‘suspected’ prostate cancer, 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 known 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.
“They must learn to become like ghosts,” I replied
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 had not 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.
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 of people who sat and talked with me. Occasionally I was alone, free to delight in the shifting light of the autumnal landscape.
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?”
“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.”
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 nurse 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 gland and 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 real battle I faced was not with or within my body, but within my mind
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 LBC winter retreat at Adhisthana 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.
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, 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 were able to meet. 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 never knew 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.
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.
“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 radio therapy. “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.
As I was leaving the hospital, I recognised a fellow Order member 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 is terminal. The first indication of anything wrong was 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.
There was no longer even a theoretical doubt that I had cancer. Wanting more of my friends to know, 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 very well-intended and was clearly meant to be supportive, such comments can be counterproductive. Fundamentally I felt upbeat about my diagnosis. I regard it as a challenge — not one that I would have chosen, but since it is there, all I can do is meet it and to do that I need all the positive emotion that I can muster. In Milarepa’s terms it was simply yet another of the myriad manifestations. I must embrace it — even enjoy it for what it is.
I made an appointment with Karunamati, 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 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. I assumed that she had worked out from my address that it was me who had been pressing for it and I was very grateful to her for her intervention.
When I met her she kindly asked if I was happy to talk about my ‘care plan’ with her, which of course I was. I would far rather do so with a doctor who was also a sister Order member than with one who was not. 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. Anyway, thank you again Karunamati for your timely help.
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.
“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.
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 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. I love my new life at the LBC and all my new friends whom I appreciate more and more. 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.
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.
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 my Order member fellow patient sitting with his sister. However, rather ungenerously, I wanted to keep my mind focussed and did not want to engage in conversation. In any case, 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.
Equilibrium of mind is more important than life. Discuss!
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!” What I had meant to say was 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 the Royal London 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.
Now I was facing eighteen weeks of chemotherapy and its side effects (as I write, I am just over two thirds of the way through) — but that is another story.”