Peter Wells’ partner Douglas Lloyd Jenkins waits at the hospital. Photo: Peter Wells
Peter Wells’ partner Douglas Lloyd Jenkins waits at the hospital. Photo: Peter Wells

BooksFebruary 21, 2018

Hello darkness: Peter Wells’ life with cancer, part 3

Peter Wells’ partner Douglas Lloyd Jenkins waits at the hospital. Photo: Peter Wells
Peter Wells’ partner Douglas Lloyd Jenkins waits at the hospital. Photo: Peter Wells

The third instalment of Peter Wells’ diary of life with cancer, republished from his private Facebook with permission.

Read part one here and part two here.

January 16, 3:27am

I set off on my pilgrimage to the oncology clinic in the spirit of my first day at school, with associated nerves and too much baggage (in every sense of the word).

The clinic is a kind of discreet airport lounge for the select (and sick) and several others were being chemicalised behind screen-like barriers. I was led to my own comfy lounge seat with, it was revealed later, semi-cocktail cabinet openings for tea and snacks, plus a screen.

I was in a high state of nervous anticipation and it took a long two hours and 35 minutes to break me down into lethargic acceptance that I was attached to a machine feeding some sort of chemical substance (Docetaxel – a friend described it as Roundup) into my veins.

At one point before it all began there was a mind-blowingly toxic smell, something poisonous and noxious, then it quickly went away. My veins were flushed. I was given a steroid then I too was chemicalised. The injection was on my right hand just above my wrist. I sat there in a miasma of boredom stuck in, as it felt, some sort of internal long-distance flight.

There’s only one way to cope and that’s to go with it. You fade out. You can’t believe the sachet of liquid chemical isn’t empty. At times various beepers go off. You sit there attached to a machine, incapable of moving.

Eventually it ends. The human pin cushion is allowed to go home. In a mirror you catch sight of yourself and you’re surprised you’re dramatically pale, almost green – the colour of dirty note paper. You don’t feel any diffferent. Just depleted. Worn thin. You’ve taken the nausea medication and there’s more to come. There’s the needle you stick in your belly 24 hours away tomorrow “to bolster immunity”.

That’s it. Your first chemo session. You’re free to go home, baby.

Outside I’m stunned to find a swarthy hot day alive with wind. The city is still half empty because of the holidays, and the schools that you pass have an almost yearning loneliness to them, as if they can’t wait to come alive again with the shouts and cries of one thousand children.

January 19, 3:42am

The morning had gone exceptionally well and I drew up a list of things I wanted to do: a walk by the sea; a book I wanted to order at Wardini’s book store; tickets for Prima Volta.

Physically I seemed to be defying the chemo slump. Then suddenly about midday I felt my energy drain out of me. It was astonishingly fast as if someone had pulled a plug on an air mattress then forced all the air out.

January 20, 7:23am

The Spinoff has done another edited edition of my postings. The first time I saw it Steve Braunias had done a very severe, smart edit. He’s gone back in and added the Gofta stuff, which pleases me in a way – the Gofta incident did frame my creative and personal life in my thirties and into my forties; its messiness was part of my messiness – but it presents me trying to explain it all over again. It’s a kind of reflex I’ll carry to the grave, I suspect.

January 21, 2: 39am

My new book Dear Oliver is hurtling out into the bookshops in March. It was to come out in May which seemed to me forever away, kind of like a trek to Moscow through the snow. So the news that the book is coming out earlier really pleases me.

What is the book about? It’s subtitle covers it very well: “Uncovering a Pākehā history”. It’s an exploration of pakehatanga through the colourful stories of one family (my mother’s family) – how they triumphed, how they failed, the stories they told. I’m the guide, so it’s all in my voice. And it’s framed with the source of all my family stories – my redoubtable mother, Bess.

The book is also framed by my looking after her in her final years, so the territory oddly enough is not too different to these postings – introspective, reflective, discursive – musing on life and death.

I’ve always thought Pākehā were the least examined of people in contemporary Aotearoa, the most casually dismissed and overlooked. Not exotic enough, and lacking a triumphant narrative. It’s an under explored territory. And I’ve chosen the highly personal lens of my own family to tell the story.

It frightens the hell out of me now we’re getting close to publication. When I got the first copy of the book my reaction on seeing so many photos of my family throughout its pages was to slam it shut in an impulse of shame. “How can you betray your family by telling all its secrets?” This is a paraphrase of my mother’s voice, which I can hear in my head as I type. It’s hard to answer except to say I don’t have much time left, Mum. I’m on the final lap. It’s now or never territory and a lot of these stories I’ve lived with, in my head, all my life. Besides, I’m an historian. I’m trained to wield the scalpel of truth. I’m also your child, so I have an inherent loyalty to fables I was nourished on.

End result – the kind of creative conflict which hopefully produces a good book.

The bad news is that March is probably when my hair will fall out. I’ll have had my second chemo by then. I have an ordinary human’s interest in presenting a reasonable version of myself. Especially when “in the public eye”. Instead I’ll be the most reduced, the most humiliated I will ever be (so far, a horrid little voice chirps.)

January 22, 2:27am

Every picture tells a story. 1973 Graduate Parade up Queen Street. Helen Clark and I were chosen to lead the MA graduates up the street. I particularly like this photo because Mojo’s is in the background. I’m wearing a second-hand brown herringbone tweed suit with a green tartan tie, and, out of shot, my brown two-tone platforms (hence why I tower over Helen.)

Peter Wells and Helen Clark, 1973 (Image: Peter Wells)

Mojo’s was where we went to get a taste of real life. It was where drag queens hung out and performed. Fiona Clarke took photos there. So it’s a kind of daylight shot which alludes to a seamier night-time reality in which I partly lived. I have Tuinal churning through my system from the night before. It’s a barbiturate. It was the ‘70s after all. I was also about to enter a time in my life I would always look back to with fondness. This was a sort of golden period in which I knew I was going away to an English university, but I had to wait for the September term to start. This gave me, effectively, part of a year in which to play and party – and say goodbye.

I was 23 and I felt I was about to go away forever. I certainly sensed my life was about to change. So I had a strange irradiance around me, of someone going away, someone who was about to disappear. But there was also the implied decadence of a person not doing anything….except, in a series of lengthy parties and night-time affairs, saying an extended goodbye. It was during this period that I “discovered” Auckland. In saying goodbye I consciously looked at Auckland and its inner city for the first time with intensity, as if I were recording it in my mind in advance. During this time I harvested impressions of Auckland as if I really were going away forever. This is when an emotional map was laid – one that led me many years later to attempt to save the Civic Theatre, for example. It was like, just when I was leaving New Zealand, I fell in love with it.

But it also felt as if I was living in a lost world at the time. There was a sense of it cresting towards a beautiful impossibility. The fragile constructions on which we built our lives would be revealed in time, almost with a viciousness. We all lived, on the surface, in a glow of drugged euphoria, from party to party. Beneath this was another colder, even vicious world. So in that sense the world I was in was already “lost”: it was just we did not appreciate it then: we lived in the last ray of 70s sunset.

So here I am walking up Auckland’s main street with Helen Clark, in my platforms, happily chatting away, on my way off into a future like everybody’s future – one I knew nothing about.

January 23, 4:01am

It’s so depressing when you seem to go backwards. Last night I suddenly got a terrible pain in my lower right back. Instantly all my gains vanished. I was back to square one. And returned to the absolutism of pain. Pain is a complete tyranny that insists it not only owns your body but actually is your body. You can’t answer back.

Despite – or because of the absence of pain which led me to abandon my walking stick/crutches for the most part – the searing pain down my right lower back indicated to me I had better 1/ go back to using crutches as a precaution and 2/I should go back on Sevredol. Sevredol, a form of morphine, is my go-to medication for pain. It’s quick, effective and often lets me obscure the pith of pain by falling asleep. It usually lasts three hours approx. Yet…and this is a big yet…it’s heavily chemical, leaves me feeling dull and drugged and, like all those pharmaceuticals, you’re left feeling slightly depressed. You’re down.

On the other hand there are natural alternatives. I’ve had two friends who have helped me get marijuana to either make into biscuits or alternatively, make into a form of butter. Both forms are illegal. It’s one of those idiotic things that a country in which marijuana is widely used approaches, with an almost medieval suspicion, the medical uses of marijuana – surely the most benign form there can be. From my understanding, medical marijuana is available here on prescription but only for the most painful terminal ie death-bed situations, and then it comes from Canada and is costly. What a farce. Why are we pretending marijuana is some foreign drug about which we all know nothing? Marijuana has been a foundation drug in New Zealand since at least the 1970s. The funny thing is I’m not really interested in the recreational use of marijuana. At all. (I used to be but that’s another story.) But I am really interested in its use as a solvent against pain, as a relaxant. It’s particularly useful against nausea during chemo.

The other day I had a good old-fashioned marijuana chocolate biscuit and it offered me an afternoon of complete relaxation as I listened to music. There was a gaudy Saint-Saëns symphony on the radio but I listened as if I had not heard music before. Nothing else existed. Not pain. Not the human body. Not even my niggling querying chattering consciousness. What’s the harm in that? I just want marijuana used for medical purposes to be freely available to those in pain. It’s so obvious it’s hard to see why it needs stating.

January 24, 5:21am

How do you tell people you have cancer? I was struck with this problem this morning in Georgia, a coffee place I go to each morning I’m in Napier. I had a crutch which is always a red flag. “So what’s wrong?” an acquaintance asked, mid-conversation. I quickly computed the circumstances. It was a casual enquiry, equivalent to “how are you?” So I stammered out, “I’ve got a back problem,” thinking that isn’t entirely inaccurate. This seemed to answer the immediate enquiry though it left the Protestant truth-teller in me full of uneasiness. My friend vanished none the wiser.

But I’ve had the experience before, in similar circumstances, of answering “I’ve got cancer”, only to find the recipient of such news incapable of giving a response. Her reply was virtually “That’s nice,” though what she meant was “that’s devastating, I can’t take it in, let’s talk further at some other stage.” One acquaintance said “Bummer” which I thought was not entirely adequate to the circumstances.

You have to feel for what’s right in the circumstances. For example at Georgia’s today I found myself spontaneously saying, “I’m having chemo and my tastebuds have all changed” when explaining why I had changed from a long-standing order of a latte to a cappuccino. (They had been fobbed off with the bad back excuse for the crutches at the beginning.) This was a perfectly smooth introduction to the difficulties of the truth. The young woman who served instantly looked sympathetic. She didn’t say anything immediately but later asked quietly, “Are you having to go to Palmerston North [for chemo]?” I felt so relieved. I’d managed to deliver a difficult truth – or really an awkward truth – but in such a way it didn’t rip open the surface of the day.

Life went on but with a changed computation about why I was using a crutch – why I might look bad on certain days.

It’s all how it plays on the day, on the circumstances, which you have to judge quite quickly. You have to fight back, on bad days, the impulse to say “it’s none of your fucking business.”

January 25, 3:36am

One could almost say my mother’s dying taught me how to live. I was close by her in her final years and I observed her ability to survive in difficult and painful circumstances. She drew on inner resources that kept her, on the whole, remarkably civil and even at times cheerful. She was quick to make a joke out of a situation, even if it was at her own expense. She was uniformly pleasant to the people trying to help her. She understood the difficulties of their jobs, that they weren’t paid much and struggled alike to maintain their dignity in an unequal situation.

Peter Wells’s mother (Image: Peter Wells)

I learned a lot by being around her. There were times of course when her patience ran out or her pain was so bad that she could barely speak. But there was a carefulness, a humanity which helped mediate what could otherwise have been a grim situation.

I wasn’t conscious of learning or even looking. I was certainly not aware I myself would be in a similar situation so very soon – that thought never crossed my mind, because why would it? I remember now exactly where I was in the street in Napier after Bess had died and her estate was sorted and I thought to myself: now the future is yours. You have only freedom ahead. You have fulfilled the role of a dutiful son.

How the gods must have laughed. Within five months I was aware something was really wrong and within six I was told I had advanced metastatic cancer for which there was no cure. How fortunate was I that I could turn – without thinking, without any conscious effort – to the manners I had observed unknowingly: I had been inducted into a school of behaviour which amounted to a lesson in how to conduct your own death.

January 30, 3:19pm

It suddenly occurred to me I was having too much of a good time. Here I was in the car, racing in to have a wig consultation, blasting songs from my high-period youth –  “Gimme Shelter” (turned up extra loud as I was in the car alone), then that old pious anthem “Something in the Air”. I felt positively hilarious with a frail kind of happiness. What was wrong with me? I had cancer didn’t I? What did I think I was doing? Hair loss from cancer is a serious issue. It’s not a game, something to trifle with. But I was intent on seeing what a wig could “do for you” in case of hair fallout from my second chemo.

The hair place was on a small side street off Upper Queen Street and I had a 9.30am appointment with Kylie. Kylie turned out to be a super-energetic wig consultant. She explained to me there are only two wigs for men – the usual lack of choice based on gender. But she explained to me how she could trim them and cut them back so they weren’t so fulsome.

I was interested in being experimental. A Warhol style wig at one point appealed. But really they only had two bog standard male wigs, only one of which was in the silver-white range.

Time to try it on.

Kylie professionally got it on my head and it felt ok. But when I looked in the mirror I burst out laughing. She said that was ok. Her last client laughed and laughed and laughed. Well, it’s either that or crying.

So here it is, the evidence of my wig-out. I think I look like a Bay of Plenty radio personality up on a morals charge. I don’t look quite me.

Kylie has assured me she’s a mastermind with the scissors and it is, after all, a kind of therapeutic service aimed at helping people suffering from hair fall out from chemotherapy. It’s actually a very serious business. But I’m pleased, in the photo, that I’m so cheerful.

January 31, 7:10am

Wading into the tepid salty sea at Pt Chev, I realised I now had the body of an older man, of the kind that I used to glance at when I was a child playing in the shallows. These bodies seemed somehow fantastic, grotesque, almost impossible to compute with your own. They were all accretion, collapse. There was no beauty there or athleticism. In my childhood these older men and women often wore wool bathing suits which sagged even when dry. Once wet, they went in almost science-fiction deformations. But my point here is that I had at long last joined a parade of ancients from whom physical beauty was hidden.

Not that the beach at the Point was a parade of beauty. There were all sorts of body types, of ethnicities, a lot of cheerily overweight people. At times it felt like the Middle East with a kind of up-close eroticism accompanied by music playing loudly and, I noted, vodka and alcohol. Pt Chev was never a classy beach. It was always a beach for poorer people from the time it was the beach for landlocked Ponsonby and Grey Lynn, when people either bussed out or came in huge old 1940s cars, carrying blankets and thermoses.

But what concerns me here is my graduation into that invisibility as an older man. Sure, I saw my younger self there, playing amid the waves. There were so many earlier versions of myself there. Wasn’t I lucky anyway to make old bones? Hadn’t lots of friends dropped off along the way, vanishing in that abrupt way that left you staggered that they were no longer there? You had to be grateful for what you had, as I was, wading out over the flat long shelf of sand which is a peculiarity of all tidal beaches. I noted one or two male beauties, a few curvaceous women showing themselves off in what would once have been deemed “shamelessness”. Yet can beauty know shame?

I don’t think so. It’s one of the things I’m having to get used to – losing vanity, coming to terms with mortality. This is part of the ageing process anyway but I had hoped to be of that older generation that did not so much defy age as try to deploy whatever arts one had to “make it fun”, stylish. Now I realised there was a bottom line: I was lucky to be alive. I was very lucky to be alive. I could almost luxuriate in something as simple as going for a swim.

This comes under the heading of a motherhood saying: “Be grateful for what you’ve got.” It’s true for that aging old dripping candle of a body wading out to sea too. I can still walk, I can still swim. I’m lucky, I feel: it’s that pervasive feeling I’ve had ever since I got told that I had this blasted cancer. I’m lucky on so many levels – not on the level of cancer of course – not at all. But somehow at times I seem to be so vividly alive – it’s not chemicals, I think. It’s not drugs (or if it is, get me more.) It’s just I see life now as a holiday. I’m on holiday now. I just can’t explain it any other way. All the old rules are gone. The calendar has been ripped to shreds. Time has a different meaning. And today I’m not in pain, today I’m perfectly okay. So let me explain it no further. I’m happy.

February 2, 6:43am

I’ve been looking at people holding hands. There was an elderly couple, she was smarter than he was, better looking, he was a sort of turnip-like creature and I thought she’d made a decision he was the best she could get and he was better than nothing. But there was also his sense of pride and possession as they trotted along in public, and who knows the inner truth of couples?

But my point is they walked along in public showing the world they were together, a unit. She belonged to him and he belonged to her. It’s touching in a way, the fragility of it – the later-life affair or relationship. But there are young people too wandering around holding hands. Thousands of them. Once again it can be a contrast, a surprise – who fits with who – but the point again is that they chose one another and they’re proud to show the world they’re together.

It’s something as an older gay man I can only look at and envy. Or not so much envy, as an element of sadness that this is something LGBTQI people on the whole are deprived of. It’s very simple really. Any heterosexual person – and I mean anyone – has the right to ridicule and harass a gay couple holding hands. This is because, notionally and probably actually, heterosexual people own the language of romance, of love, of being in a couple. And LGBTQI people together are especially vulnerable to insult. We grew up with it. It was the lingua franca at school and on the streets. Besides, who wants to hold hands when you know it will invite insults, pointed looks, at the very least a frisson of surprise? I’m not talking inner city Grey Lynn here. I’m talking the real world.

When was the last time you saw a gay couple holding hands – I mean in a casual, not threatened way? Douglas and I, for example, rarely hold hands in public, not while we’re out walking. Yes, in the pictures we’ll hold hands alright. And at emotional times, like in hospital, we have held hands by way of mutual support. But not on the streets. We’re too used to insult. (And there’s something so killing about being insulted on the basis of your love.) But I guess my point is, if you need to marshal your fears, stiffen your back to do something so simple, it’s just not worth it.

I guess that’s why I’ve been looking at people holding hands. It’s heterosexual privilege in action, without anyone being aware of it. It’s always beautifully unselfconscious. I mean it’s not like a Māori and a Pākehā in the 1960s, or a queer couple holding hands, which is a political act. Back in the 1970s my boyfriend and I decided to hold hands in Queen Street. It didn’t take long for us to be chased – guys wanted to beat us up. We just ran away, high on adrenalin, laughing. We knew that would happen but we “wanted to make a political statement”. But should holding the hand of someone you love be a political act?

So many decades later, I’m tired of making political statements. When Douglas and I first met I waited for him at an airport. When he came out I came forward and we kissed, as you do when you’re thrilled to see your one true love. Then one day someone – a woman who you might describe as white trash – called out “Ew, YUK!” so everyone could hear. We froze and it broke something. After that we kissed in the car. We accepted the seat at the back of the bus, in order to save ourselves embarrassment – in order to keep our love from being contaminated. I mean, do you want to kiss someone you love and for any member of the public feel they have the right to make a stigmatising public statement on it? I guess that’s why I’ve been looking at couples holding hands. I see it as some kind of social miracle. They’re so protected by their privilege they don’t even have any idea how privileged they are. They live in a dream world. I’m forced to live in a real world. I watch them walking along oblivious and happy and secure.

You keep an eye out. You’ll spot them too. How lucky they are. How unawake. How in a dream. I wish I could live in a dream world too.

February 4, 7:59pm

It seemed forever ago that I had driven to Ascot Hospital in the early morning to meet the urologist who had kindly agreed to see me before he started meeting clients. Everything seemed in a state of emergency, which I myself barely failed to appreciate. A few days later he delivered the news to me that I had incurable cancer and that it had penetrated my bones to such an extent that I needed immediate and urgent treatment.

As I drove past the building today I felt distant from it all, yet almost nostalgic, which is a most peculiar emotion for something so stark. By this I mean, I felt I was treated well and decently and everything that flowed from that moment had been done well. As I drove by I even conceived the idea I might survive this cancer. I felt almost ludicrously well. I suffered very little pain these days and my meds seemed to do whatever they were meant to do. Was it possible I would survive longer than had initially been thought (though the survival period seemed always to be left very ambiguous, stretching from a few years to an ambitious eighteen, if I managed to elude the symptoms and become atypical.)

I had a huge will to live. This very document, or rather all the postings I’ve been doing, have been flags raised saying: I’m ok, I’m here, I’m still here. I’m not going away anywhere soon.
At the same time I knew it was not strictly up to me how I would survive. Yet the announcement that I had metatastic cancer seemed a life time ago to me, even though it was only November last year. Three months can seem a life time in this highly pressured situation.

Yet what this is about is the small grace of human contact which does so much to make ‘a life in medicine’ bearable. I was having my bloods and testosterone read before my Monday chemo. The woman who took my blood was a migrant, efficient, personable, just into early middle age. You are only ever in the room alone for a few minutes but in that time we managed to establish a rapport. First it started with her skilfully asking a question just before the needle dug in. I was diverted, relaxed. Then we went on to chat further when she showed me the vials of blood, for me to identify that they carried my correct name and birthdate. I wasn’t wearing my glasses and this led to some badinage about declining sight with age, all of it light and humorous.

We parted almost like friends. Of course not real friends. But somehow the humanist impulse made what was otherwise routine into something special. I had come across that so often on my brief medical odyssey. The urologist who had the difficult job of delivering bad news had the mien of a man who regretted what he was doing but he also had a gravity which bespoke kindness, empathy. Ronnie the nurse was someone I almost fell in love with because she was so worldy-wise and tough but kind. Again and again I had brushed up against people who made the small interactions a chance to express the grace of being human. So this post is about looking back quickly at a moment that changed my life – “What’s gone and what’s past help/Should be past grief” Shakespeare advises in The Winter’s Tale, but that’s not always easy to obey – I’m not sure I’m past grief. But what alleviates the situation are the human interactions that help you concentrate on the fact you’re still alive.

February 12, 7:28am

I was never going to make old bones. Even as a child I knew this. I was a contradiction of a child, both very timid and very determined. But one of my self-perceptions, even as a child, was I would not live to be an old man. Why would this be so? I actually liked old people. My grandmother (actually only in her late sixties when I first met her) was the old person I saw up close and I liked what I saw. She lived with diabetes, injecting herself daily but lived with elan, with a real joy in life. She was in fact greedy for life’s pleasures.

She was not a touchy-feely grandmother. She didn’t bother to even come and see me till I was two. (She lived in Napier, we lived in Auckland.) But I found her fascinating and as a young boy had this irresistible desire “to be old”. It seemed from my child’s perspective she knew everything, had her life in order, did whatever she liked and lived within a vivid perimeter of freedom. My parents, by contrast, were strained, doing things they did not want by rote, angry often at what life had dealt them. So from my child’s perspective, to be old was a wonderful thing.

I did not understand or see the underside of her life. Ill health constantly haunted her. She lived alone in a big old villa in Napier, the family home. The family had fragmented after the Napier Quake, her three daughters sent away from Napier. And they stayed away. They never came back to live, only to visit. So she lived with loneliness on a daily basis (but then she played bridge and had a more active social life as an 80-year-old than I did in my twenties.)

So why did I not aim to join that brigade of lively old people, full of life and eager for pleasure? Was it that I sensed my gayness, my essential solitariness even as a child – before I had any sense of sexual characteristics? As a child I thought perhaps I might end up living with my brother, both of us old men quarrelling about table cloths and pronunciation. I had two old bachelor family members like something from Patrick White and that seemed good enough for me (strange faded polite men, almost speechless at a funeral).

Was it that I could not conceive a present such as I now occupy? I have had a companion – an old-fashioned word I know but more profound than “partner” – ever since I was in my twenties. I’ve lived briefly alone, in between relationships, but I was made for companionship, intimacy and even the balms (and bathos) of domesticity.

So on my 68th birthday last week I asked myself: was this idea I would never make old bones based on my inability to imagine a future such as I occupy now – living with another man I profoundly love?  A putative old age was too hard to comprehend, let alone a form of a companionate homosexual marriage as a future.

Yet now as I age into age itself I wonder if I was wrong. I have no wish to be really old but on my birthday morning, on awakening, I thought: wouldn’t 75 be a wonderful age to reach? I would be old bones. I would have become, definitively, an old/elderly person. It gives me something to strive for. Is it my grandmother I see ahead of me in the mist? Is she beckoning me on? On awakening, the number 75 had a beautiful chalky whiteness like a cliff I could glimpse, across a big space, in the far distant future.

February 14, 4:49am

I’m still only midway through my programme of treatment – the three-speared attack through chemotherapy, radiation and hormone treatment – what my urologist, a man of unusually sober temperament, described as “throwing everything at it.” So far my response has been good. My PSA has gone down from an almost hallucinatory 600 to an acceptable 35. I walk without crutches or stick. I have not so far, touch wood, suffered nausea and other side effects from chemo. I am greedy for life.  I feel at times I am living in a fool’s paradise as I feel so well it seems a dream – even someone else’s dream or nightmare – that my body has within it a greedy cancer that has entered my bones.

I know I am incurable. Or rather my disease is. But can I….ah you see, here I am pleading for crumbs, pleading abjectly. It’s the same thing that sends these men fanning out to the ends of the earth in search of deliverance/salvation/hope.

I would go on the pilgrimage if I ended up at the Last Hope Cafe. Of course. I would try. I’m not sure I would spend the rest of my life trying, however. I have a reality principle embedded pretty deeply within me. I’d rather spend whatever time is left enjoying myself than sitting in hospitals enduring painful treatments. But we’ll see. I have to accept that if I am faced with the fact my treatment has failed (what does that mean precisely?) but if I’m told that I’m going to die soon and somewhere on a far horizon a smoke signal emerges, would I have the strength of character to ignore it? I think not.

February 16, 7:04am

I have always had a complicated attitude towards sexuality. My natural development was stymied, like so many gay men of my era, by the illegality and stigmatisation of the time (how easily one can write these words down, emptied of so much pain – a plain of horror and self-hatred. Those years of so called youth lasted an eternity.) In my own case I had an extra bonus, you might call it: I was sexually abused as a boy by an “uncle”.

I can barely bring myself to raise the issue. First because it was pretty much endemic to the time and secondly because I resist the idea that sexual abuse is a rationale for all sorts of later problems in life. It was just something that happened. It was a corrugation of my soul. I became frightened, even terrified of sex. It took many, many years for my feelings to unfurl (or even for me to understand what had happened. For decades it seemed a profound mystery. One moment I was a boy. The next moment I was fucked-up.)

And when I did unfurl, it was, maybe fortunately, during the years of Gay Liberation. I walked into the future, however, carrying the baggage of the past. (I did not understand this.) It took me many years to relax into something that other people might see as easy and natural and casually accepted. And like so many gay men, once I was free (or freed) I raced ahead barely being able to stop gulping down life’s pleasures. I mean sex. I needed sex in order to know I was alive. That dead body from childhood which I carried into maturity needed to be not so much buried decently as brought alive, given the grace of some kind of acknowledgement as to what had happened, then be allowed to fade away in shade and quiet.

Only then did I learn to understand myself sexually which meant, as much, learning to understand other people. People always talk of sex as somehow separated from the rest of life instead of being intimately connected with every aspect of it. Who hasn’t, after a great experience of sex, felt that the world was riven with beauty and meaning and energy. Yes, energy, that most important force.

So what happens when you make a bargain that you will forgo sexual energy in order to simply stay alive? What a knavish, slavish proposition. Yet it is one I have accepted in taking Zoladex, knowing, at the same time, that I have behind me an encyclopedia of sexual theatre – a time in my life in which I fully explored all my appetites so at least I feel I do not progress into this strange future full of regrets and half-resolved wishes. But that doesn’t mean it’s easy or even right.

The castration – such a volatile, shall we say, triggering word for nearly every man on the planet – takes the form of a gradual dialling back of sexual feelings. A sort of blank emerges where before there was jagged electricity. Slowly you lose response – not desire, but you become less interested in the connection between feeling and realisation. It is as if you had retired from the human race. You are in the superannuation of desire category. You still look, you still notice, you still vibrate. But there is no motion, not even the desire for motion, beyond this. I found it quite restful at the start. It seemed startling, novel – a holiday away from the senses. Then a stranger thing happened: things that once evoked desire suddenly became quite neutral, then strangely objectified.

I look on it as an outsider, someone who is no longer moved, let alone prompted to turn imagination into action. It’s a strange, rather peaceful, world to live in. It’s like I’m in an aquarium of the senses, a goldfish floating about, a goldfish with some retention of a memory of the great open sea, of huge cataclysmic waves. So that is my side of the bargain at present. Yes, I have had hot flushes – sweat has run down the back of my neck in sheets. And yes I have felt muddled, my mind at some low wattage moment. And yes I have lost touch with the deepest echoes of desire.

If I am to lose so much, am I to be given life? That is, prolonged life (insofar as a man with metastatic cancer can be)? Who knows? That’s part of the devil’s bargain. You hope, you trust, you float away on a becalmed sea, semi-praying. Yet I’m not unhappy. Perhaps I’m no longer aware of what I do not possess. But I think I know quite accurately what I have lost. What disturbances, what riots, what insanities, what wild improbable ecstasies. I am near enough to the practice of them, their vivid memory still echoes for me. I know the taste on my lips and the sweet-sourness of them.

But I am travelling calmly on into unknown seas. At the moment I have to.

Read part four here.

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