Author Peter Wells began a series of posts on his Facebook page last month, ‘talking about what I saw, was going through, thought’. He has given the Spinoff permission to republish his diary of life with cancer.
November 15, 10.45am View from my hospital room. In the foreground, the green building is where I flatted with my brother Russell in 1974. Russell was a great stylist and the flat was possibly the most beautiful flat in Auckland with an outdoor upstairs garden. So many lifetimes later I am in Auckland Hospital being treated for prostate cancer. Such a short distance and yet so far…but it is a great comfort to glance out the window and see an old haunt potent with memory and in the other direction, the ruffled swan on the gates that led into the Domain, where we had so many picnics as children and later, as a student in various drugged states of either ecstasy or despond, I wandered about thinking I lived in a very beautiful pocket of existence.
November 17, 7.42am After the long silence of the night, which begins about 9.15 in Oncology Acute and goes through to the first stirrings round 5.30ish it’s a pleasure to look out the window and see a crisp day with people hurrying off to work. I think of all the times I – likewise – walked past the hospital, screening from my mind all the pain that dwells within, focusing instead on my end objective, or the fact I was running late or early, or when was I going to have a coffee and especially where? It’s a tonic for me looking out the window now seeing life going on, everyone out there beautifully engaged in the act of living.
November 18, 5.55am In praise of Ronnie the nurse. She has a lived-in face and a voice which speaks of late night music and low lights, a soft husky catch of a voice which always has at its end the suggestion of a laugh. But she’s serious, on the level, is Ronnie. She’s a voice you lilt to the moment she enters the room. It’s like a gust of wind filling the space, the energy of an outside world from which we are all momentarily exiled. She carries it in, captures it and there’s some kind of exultation in how she expends it among us. Life force, breath of life.
A professional doing her job, doing the rounds, adding the unseen, unknown but deeply felt. Ronnie the nurse: we four men in our separate beds in Room 13a, Ward 64 salute you!
November 19, 9.43am
Two sides of my life now I’m out of hospital. Grateful, thrilled to be back in “the land of the living”, a little uncertain, loving being home. Friends call and visit, I sleep. Life always has two sides, it’s just at the moment I am seeing them clearly now. That isn’t necessarily a bad thing. The taste of my first latte was so bound up in anticipation I actually found it hard to analyse what I was feeling/tasting. It’s better not to anticipate things maybe – just go with what’s happening. For such a controlling person like moi this is quite some lesson.
November 21, 5.05am
I was aware I was being sharper than I normally was. I had become like someone impatient about time. I am normally too polite, a default of the mock gentility of my upbringing. (As Douglas was wont to say, “The Wells family were the only family in Point Chevalier to have footmen.”)
But now the imperative of drugs, not feeling quite well, uncertainty about even what was happening to me made me tetchy to the point of rudeness.
But I’m all over the place. When we got home from the first radiography session this morning – in which I was so frightened I lost all competency to understand the most basic information like ‘turn left at the door’ – I smelt the soft warm unmown grass and could have cried.
The very final mockup of my new book, Dear Oliver has arrived. I have a few other books I’d love to write, one in rough draft on my desk. So while I am in the trenches of bad temper and uncertainty about my health, not being capable of understanding simple directions like “turn left” and on the verge of being tetchy and testy… I also have a sense of a pale summer sky high and alluring
November 22, 4.52am
Ajax the cat stretches out to welcome me on a stunningly hot day. The balm of animals is so appealing. The silence, the empathy, the animal ability to sense sadness, woundedness and to wordlessly offer companionship. It is deeply affecting.
After radiotherapy I change into pyjamas and lounge about, reading, snoozing, tying up the last loose threads of Dear Oliver. Friends call round, carefully calculating the timing of their visits to around 15 minutes. They bring not only treats – like a child I am very keen on treats – but also the miracle of a friendly face, an empathetic silence and a discreetly watchful gaze. Some say: you must be vigilant and fight. Others say take your time and recover. Others again say little but share our limited time together and we find ourselves laughing, very agreeably, forgetting for a time the difficult predicament.
Many of these friends I have known over half a lifetime. Some go back to my 20s, some to my 30s and some to my 40s. Even they seem very old friends now.
It struck me how these entirely nonsexual relationships had a richness and strength sexual relationships, which flare up, scorch, immolate, enmadden and flare out, lack. One tends to privilege these sexual relationships. They were what love was meant to be like. It ate you alive.
Yet what can one say for the silent depth of friendship based on simpatico natures, a shared sense of humour, respect perhaps for the other’s point of view. Knowledge of risks taken, mistakes deeply regretted. Dreams once vivid now not so much lost as no longer useful in making one’s peace with life.
I think of some of grand erotic madnesses I experienced and confess to finding them in the light of day not so very interesting, outside the theatre of self obsession. I am sustained instead, or perhaps as well as, by the kindly intentions of Ajax the cat as he stretches towards me, turns over and yawns. Or the friends who move towards me to embrace but place their arms carefully about the framework of my ribs but go no further.
November 22, 4.26pm
I had never known pain like that. As a child I had had infected eardrums. Up until last night that was my definition of the utmost pain a human can stand. Then last night, ten or so hours after the second dose of radiation, I began to feel a pain so rending I could only cry out, as if in making a sound I was imploring it to stop. It has no dignity and is quite bestial. I’m returning to being an animal in pain.
I can’t lie down so am sitting on the side of my bed. I’m afraid to lie down. Especially if the pain suddenly stabs it becomes impossible not to move without yelling.
Douglas is in another room asleep. We started sleeping separately when my restlessness kept him awake – my inability to get comfortable. I miss his body enormously, a body that for 26 years has been able to subdue my nervous anxiety, calm me down and make me more human. Even holding hands in the dark is a powerful physical narcotic to me.
I’m afraid to wake him up but one part of me wants him to be awake, as he could then share my pain. But this is a fact. Nobody can share pain. You can empathise, try to help, calm, obtain medicines, more water, but in the end you are on your own.
It’s Douglas’s birthday. I have a small present to give him then some other presents on the following day when, for practical reasons we decide to hold a small birthday. Again for practical reasons – I can no longer really manage a cooked meal – we will have Indian takeaways and some Moet. This is not how we expected it to be. But this is how it has turned out.
It’s quiet now at 12.31am – as much as Auckland is ever quiet. Cars on the motorway for example, the restless sounds of people going about their lives. And I have to contemplate a long night in which I cannot lie down but must remain sitting on a dining chair as that is as comfortable I can get.
Later: I am readmitted to Ward 64. The admitting nurse turns to Douglas and says, “You’re what? His son?” For some reason this cheers me up and makes me think of when we were new to one another and D had suddenly been admitted to hospital for a small but urgent operation. When he was going under the nurse said to him, “Don’t worry. When you wake up, your father will be sitting there.”
“I fucking hope not!” was Douglas’s spirited rejoinder and the nurse later admitted, red-faced, she was incredibly embarrassed at the simple mistake. For some unknown reason this made me laugh and laugh at the time – I was glad we were not an identikit gay couple mirroring one another – and sitting here now awaiting a bed upstairs in Ward 64, intensely relieved my pain will be looked after, it still has the ability to make me smile. We match with whoever we match with.
November 23, 7:09pm
To my utter amazement and like something from a fairy tale a lithe elderly lady on a walking stick walked into my room smiling and hand delivered a gift from Lyn Kriegler. She had come from Karekare. I asked her to sit down and apologised for not being able to make her a cup of tea. She explained it was no trouble, she had caught a train into town (possibly via a bus) then had a dentist appointment (the numbness was wearing off). She walked over Grafton Bridge then managed to find me in this labyrinth (amazing since I was shifted only an hour ago.)
Her face shone with kindness and a kind of grace only intelligent old age can emanate. We chatted about Auckland, Lone Kauri Road, and Lyn then she leapt to her feet saying it was time she moved on and was gone.
I shook her hand before she went partly to convince myself she was real. A visit from a goode faery, I felt.
November 24, 4:01am
Marie my radiology specialist said to me it was possible the extreme pain I experienced two nights ago – three? – is actually an expression of how effective the radiation is at killing the cancer. I’d like to think so and I guess we shall see.
“What do we live for but to make life a little less difficult for each other” – George Eliot.
November 24, 10:04am
The remarkable taste experiment by which an inevitably cold thin piece of bread that was once “toasted” has been left to rest so it takes on a true cardboard consistency. It is then delivered to your room on a stone cold plate, alongside oleaginous matter of a yellowy substance and more substantial, nay even desperate dark noxious mixture known as Vegemite. And in your desperation and boredom and hunger you smear said contents across dry cardboard, open your mouth, take a bite and receive the information that there is no pity in existence, only hospital breakfasts. Nevertheless you resolve to look on the bright side of life, telling yourself it will only take a moment, you persevere and you eat every last crumb. “Delicious!” You mentally instruct yourself, while your taste buds cower and plead never to be so discriminated against again. The sad tale of the vegemite toast here endeth.
November 25, 4:11am
At times I open my eyes and I’m surprised to find I’m in a hospital room. I look around me and adjust – it’s by no means painful or awkward now, just a new kind of normal – and I ask myself “How did I end up here?”
It takes me a while for my mind to travel back, branching off at emergency stops, sudden moments of fright, meetings at which these fears seem addressed only to find later, that one small detail unaddressed turned out to be the one significant thing that would pull you back into hospital.
Yet once you’re in here it’s such a self-sufficient self-perpetuating system it’s very tempting to give in. (The pain killers help.) It seems to function without you yet you seem part of its function. Endless pleasant people appear to ask questions, often the same questions over again.
Occasionally you must disturb yourself so you struggle in your hazy mind to connect the pertinent facts, so that the one unaddressed small problem does not open up before your feet again. (Hospice Pain Management seems so ideal but you have no reference point or address for example.)
You are either close to dying or you are infinitely distant. You are intimate now with the idea but only the idea of death, and you are not sure you want to get any closer. Isn’t a vague impression kinder at times? Besides who can read the sentence? “I’m an 11-year survivor of cancer,” an acquaintance said to me the other day. There are no rules. Take medicinal dope. Take turmeric. Just try and remember all the pills and what they’re meant to be doing to you and for you.
Be grateful. Be grateful you’re alive and we have a hospital system which still functions. Just be grateful.
And lie back on that bed in Ward 64 Room 5 thinking of all the stories you’ve heard, so spliced open in the urgency and heartbreak of the moment. Feel humble to be so near the human condition.
The pain killer eases your blood through your veins. You wonder if you’re not being sentimental. You wonder if you don’t actually like being removed from life and wrapped up in cotton wool and protected.
Then you hear the rattle of the wheels of the wheelchair coming closer. The orderly has arrived to wheel you down to ‘Transition’.
Transition is where you’re headed. The cotton wool is taken away. The plugs taken out of your arms. You say – momentarily like a schoolboy leaving a boarding school he suspects he’ll never escape – cheerful goodbyes of strangers who hope never to see one another again. At the same time accepting that when you do meet again inevitably you will be familiar and hail-fellow well-met.
Then at the last moment that young doctor with a smooth face unfurrowed by life’s harsh teachings – the one gave you marching orders this morning – pops back in. “By the way, have you got enough Sevredol [pain killer] to get on with at home?” No Blanche du Bois could have answered with more sincerity.
Being sick ill or whatever it’s called – experiencing cancer – is not only an illness, an attack, but it’s a kind of new learning, with all its ability to not connect, lose meaning or project new translucencies. I’m trying to listen, to hear, to negotiate what is patently a difficult and complex course. But it is also an education in the human emotions, not least of all, my own.
November 25, 3:54pm
Why I am happy to be home…in the time I was in hospital it has magically turned to summer.
November 26, 4:54am
Feeling my way down the back steps by touch – I was going out to turn a hose off – the most delicious apprehension of an early summer night, air alive with insects and sounds and a drowsy wind barely stirring: I felt I was walking out into a primeval memory of summer evenings I knew as a child. I am no longer a child but in that second I felt all the longing and anticipation of another summer.
November 26, 3:39pm
This morning I felt energised so got up early. The dishes from last night meal were there. I had slow-roasted a small leg of lamb the night before – as much for the smell as the taste. (I’ll make a shepherd’s pie in a day, my all-time comfort food.) We had drunk some good champagne.
In between I’ve been reading Atul Gawande’s Being Mortal: Illness, Medicine and What Matters in the End. Partly this is because I’m seeing a consulting oncologist tomorrow and I have little idea what to ask.
Reading the book is not without its challenges. For example: “A study led by the sociologist Nicholas Christakis asked the doctors of almost 500 terminally ill patients to estimate how long their patient would survive then followed the patients. 63% of doctors overestimated their patient’s survival time. Just 17 % underestimated it.”
Gawande’s thing is that people suffering terminal conditions need to be more assertive about how much they want to do, to try and change what may be, at some time or another, a predestined end. “Those who saw a palliative care specialist stopped chemotherapy sooner, entered hospice far earlier, experienced less suffering at the end of their lives – and they lived 25 per cent longer.’
This is all a lot for me to think about. I have to even work out where I lie within this perspective. I do not know at present. There has been a lot of “it’s not good but it’s not the worst I’ve seen.”
I was taken aback on the day I left hospital, when that smooth-faced young doctor mentioned to me the likelihood I would be having chemotherapy. This was a shock. I had understood it was a distant possibility. Now I saw the doors were wide open and they were in fact awaiting me. It was I who had to catch up.
So on this gentle Sunday I see friends, we laugh, I do a bit of writing, read some more Gawande then decide I can’t bear to read any more. I have a Sunday snooze and I plan to have a piece of that delicious date loaf Alexa brought round. It was warm from the oven when she arrived.
Also I have a washing basket of mismatched socks to match up.
This suddenly seems rather enjoyable.
Concentrate on the actual, I think.
November 27, 4:42pm
In April of this year I was, once again, packing up Bessie’s, my mother’s, possessions. She had just died. I didn’t know what to do with this tea set which was too pretty to throw out. I kept thinking: “Someone will really like this. To someone it will be special.”
A friend had sent a cake down to Bess in a strong cardboard box so I just packed the tea set away and carted it back to Auckland. But I could never quite find the right person to give it to, who wouldn’t just shrug and wince.
The other day my eyes rested on it and I suddenly thought: I know who that tea set was saved for!
So I unpacked it, washed it, admired its pretty Suzy Cooper pattern of pink and gold and realised you often don’t know what you’re doing at the time but there is, indeed, sometimes, another purpose
November 28, 2:33am
The empathy of cats. Of animals. At my worst, when my Napier doctor said I had prostate cancer and it was too late to do anything – ‘here’s some Panadeine and goodbye’ – I was in hell. Douglas was up in Auckland and I wanted to talk to him face to face. It was a long and terrible night. But the two cats we have in Napier came and slept close to the edge of my bed. But there was a real delicacy in that they did not impinge on my territory so as I was thrashing to and fro they were not in the way. They stayed close by my bed all night, sentinels.
This afternoon, feeling a little fragile from my morning’s zap of radiography, Ajax the cat very quietly jumped up on the bed, placed himself near my feet, not touching me, looked at me intensely for a long moment then went to sleep. It touched me deeply.
I’m juggling in my mind the realities of accepting an 18-week course of chemo after Christmas. I decided to try an early ‘aggressive’ response tho some wan dubious part of me wonders if it is to myself that the aggression happens rather than the cancer. Or are we the same? An interesting question.
I have a lot of questions in my mind at the moment. (Costs, pain, loss of sex, danger. Will it even work?)
The good thing is I am through “the crisis” which exploded in mid-October. Now I am in the “treatment phase”. I have doctors here in Auckland taking able and astute care of me. I feel I can plan my life ahead. Surely this is a corner? And isn’t it good symbolism that, after visiting the oncologist and deciding to go ahead with a plan of treatment, the very final tweaks of Dear Oliver were done so now my new book can wing its way into the future. I am listening to the beat of its wings as I sleep….
November 29, 3:17am
If someone had said to me two months ago you can only walk with crutches I would have looked at the person with disbelief. Yet walking on them has crept up on me and I have actually got, if not fond of them, to regard the sight of them as a relief. They hold me up while I drag my sorry arse around God’s earth.
I’m still trying to work out a way round the problem when people say “hey what happened?” I decided “problems with my back” seems close enough to the truth without going into detail . Whose business is it anyway?
Disclosure is a strange thing and I’ve chosen Facebook as my way of talking about what’s happening to me, which is curious as it’s so porous yet I’ve found so listening. Facebook has really helped break down my sense of isolation. For me, writing here has been urgent, even necessary, my way of thinking aloud, of trying to make sense of the crisis I found myself in. But to write this in a listening silence is to feel, to a degree – I won’t use the word ‘blessed’ because of its religious significance – but accompanied.
I have had my moments of self-pity especially at the start but somehow I’ve travelled speedily into acceptance. Perhaps dear old Bess my mother dying in April… did not harden me, but prepared me for life’s precariousness.
I still wish I could look into her face.
December 1, 2:27am
“Old friends/sitting together like bookends.” Today two old friends arrived round with lunch. I met Jenny when she was just over 17 and Alexa when she was 16. I was 20, gay, which at the time was unusual, and a student. I am 67 now and our bond is such they wander in the door, put down a gorgeous lunch and conversation never stops and is like a big bolt of cloth unrolling from our long-ago youth and rolling off into the future with the same energy, humour, insight and – generosity.
My taste buds are no longer as accurate as they were and I just sat there almost in dumb silence feeling grateful.
My mind seems to function on a strange level at the moment, barely functional. Or rather I am looking beneath or hearing under or seeing other things. I feel intense relief when Douglas comes to interviews with me as he remembers dates, times, when and where. I’m almost inert in these interviews struggling to make sense of what is obvious and logical as well as what is quite difficult to grasp.
This strange listening silence I hear is not unpleasant though and swells at night (and hence why I often post at 4am.) But when friends like Jenny and Alexa arrive, I hasten to meet them knowing the silence will now be mottled freckled and fractured with laughter and chat and as I open the door, it’s as if a light floods in – as it did this evening through the plane window as I flew with Douglas back to Napier
Just before leaving for Napier a magnificent bouquet of flowers was delivered. Douglas said to me, “You must be shameless and carry them on the plane, as if you travel with flowers all the time.”
The plane was endlessly delayed then overcrowded – everyone in a bad mood so not even the air stewards said a word – but on arrival in Napier they were perfectly fresh and splendidly colourful.
I put them in a vase and sent a note to my friends at the Auckland Writers Festival saying how much I appreciated them and how really the Napier house was the perfect place for them. So it was as if what could have been a missed gesture – I could have not got the bouquet – had the force of something thoughtfully planned all along and ending up in the perfect spot. I love them and every time I walk past them I feel a thrill – I do.
December 4, 7:08am
“There are two or three good books about Tolstoy’s wife, but mine cannot be one of them.” Disarming frankness from A N Wilson in his discursive bio on Tolstoy. Wilson is not exactly a reliable biographer but he writes with such momentum, bringing in so many peripheral thoughts you never forget you’re reading one human’s idea of another person’s life.
The marriage he described as “one of the most closely documented and most miserable marriages in history.” They both wrote diaries and it descended into what Wilson calls “diary wars”. But he is insightful about Sofya Tolstoy and his account of Tolstoy giving her his diary the night before the wedding – in which he talks about multiple affairs, his mistress with whom he already had a child, his homoerotic response to beautiful men – is chilling.
The wedding was already arranged and almost in a state of shock Sofya let the marriage go ahead. But on the wedding day the ceremony had to be delayed as Tolstoy “could not find a clean shirt.” I think there may be a symbol there.
December 5, 2.49pm
Then there was the time I got into trouble. I was too earnest and too angry. This photo was taken the day after the scandal sheet Truth came out revealing to an outraged public I was what they termed “The GOFTA Slob”.
At the time of this photo I thought the whole thing was a bit of a joke and it was even a notch on my belt to have become a Truth headline.
Hence the smirk. (And mullet.)
Not so. Backtrack. On the night of the 1987 Film and Television awards I had yelled out to John Inman of Are You Being Served?, “Fuck off, sexist shit!” when he came on the stage. Context – it was 1987 and we were fighting for homosexual rights and Inman represented a character who could never be authentically gay ie he could never say who he was. A strange person to give out an award.
Further context. I had co-written and then directed a 30 min drama called Jewel’s Darl which, in the context of the Muldoonist politics of the period, was radical and out there. (It was about a day in the life of a trans woman and transvestite friend). TVNZ had objected to trans people being treated as anything other than Benny Hill funny and sat on it for a year. I’d just missed out on a prize for best directing, best writing, and then best film. I was feeling pretty raw.
Further context. I had no idea it was being broadcast live with no delay. Hence the immaculate Bremworth carpets of the nation were assaulted with that lovely Mr Inman being called – what? – a sexist shit (what is that?) and invited to four-letter off.
Fuck was not a word commonly heard on public television in those days. Every time it appeared it was an Event, like Angela D’Audney going topless in a drama. It was a very big deal.
The following weeks and months revealed the depth to which I had offended the general public.
My career up to then was on the point of blossoming. I was making a documentary at the time aimed at saving the Civic Theatre from demolition. Ahead lay a mini-feature about destigmatising Aids at the time when Aids hysteria ruled the world. This would become a celebrated film world wide. Even a feature film (Desperate Remedies) lay ahead in the dim future.
I got anonymous phone calls: Get Aids and die, homo. People no longer met my eye. I went into being a non-person in the industry, my career pushed to the side, funds starved for future projects.
So it did turn out to be a big deal. “Friends” melted away. So did work. I became persona non grata and a laughing stock. For years afterward I knew people much preferred to remember me – pigeonhole me – as the Gofta Slob, rather than the person who helped save the Civic Theatre or helped create the Auckland Writers Festival.
It’s a reflection on human nature that people often prefer to scorn.
Over time I got over it. But did my love affair with NZ – that thing which brought me back to NZ with such a desire to contribute – did that survive? It was seriously dented as I felt I’d looked right into the heart of a cold miserablist country at that moment.
At the time people did not take trans politics seriously, or see there was actually any political issue to do with representation or minorities having the right to be represented fairly. Equality was a long long way in the future.
In time I would leave the film and television industry. I turned more to writing, as I felt the page was not so much safer as I could be more in control. My career in film and television vanished. I became the writer you recognise today.
The Gofta period marks a time in my life as severe as a bridge, on which lies one part of my life and then the other. But it did give me some life skills.
Steel entered my soul at that point and when people comment now that I am somehow managing to look at my current difficulties with at least some equanimity – some acceptance – it is that I learnt some skills in being able to withstand or at least live through adversity at that time.
As a footnote I’d add when John Inman finally did die many young gay men said they had been terrified to come out because they said “if that’s what I’ve got to be like, I’d rather stay in.” So role models and fair representation do matter.
It’s a long time ago now and I now understand better that Inman’s winking leering comedy related to illegality and persecution – to what you could never say out loud. But I still shudder at the thought of my naivety that my calling him out out was all a bit of a joke and it would be over in the next news cycle. It changed my life.
In fact it has taken me a painful 30 years to actually write anything about it.
December 6, 3:03am
Yesterday, on the spur of the moment, I decided there was no reason I could not jettison my crutches and have a go at driving the car. I was in Napier where traffic is relatively light. I chucked the crutches in the back – perhaps a touch brutally – got in the driver’s seat and backed down the drive. Nothing happened. Or rather my limbs obeyed a life time’s devotion to and pleasure in driving. With what eerie ease I flew down the hill to the supermarket where I parked the car, got my crutches out, did the shopping, then – in a blaze of triumph – took the shopping home.
I was reminded of the first steep downward hill when I got a push bike – a compound of exhilaration, disbelief and utter pleasure in being alive.
Then today in Auckland, I got in the mail a disability parking pass. Instead of feng this was part of my downward trend towards immobility, I noted it went through to November 2022. In a world in which no one will or can give me dates, this struck me as wondrous. It seemed full of confidence, ebullient and mentally I stuck it before me, like a badge I could flash at people as I drove into the future, waving almost like a beauty queen.
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