The fifth – and final – instalment of Peter Wells’ diary of life with cancer, republished from his private Facebook with permission.
Read part one here, part two here, part three here and part four here.
April 12, 2:39am
I’m back from the dead. The thought struck me today with almost a physical force when I was sitting in the doctor’s room.
I’ve somehow pulled myself back from the gulf, the edge, the precipice. This wasn’t just my energy – it was chemotherapy, all the pills, radiation and the careful judgement of Fritha Hanning, my oncologist and Alison Copland, my doctor.
Get me. I’m already turning it into an Oscar acceptance speech. But hey! I’m back from the dead. That’s how I feel. It may not be literally true. There will be complications. But inside myself, even outside myself, I’ve got this incredible joy and life force, that I’m alive.
So it’s farewell to Freddie the walker and to my crutches. They are being sent back. I can walk alright without them now. I have a walking stick, my own silver and black walking stick, which I use when I need some extra support. It feels like a significant moment. Letting go of the walker and the crutches. I can remember, back in November, how feeble I was, the amount of pain I was in. I was so thrilled to get a walker, and I used the crutches daily. Dear old Freddie – farewell!
It’s amazing the way I’ve improved. It’s only by looking back I can see how far I’ve come. But get this: I am being discharged from the Hospice programme. They’re getting rid of me. They visited me today and said I am too well now to be in the Hospice programme.
I feel – well, I feel a little frightened to be so abandoned. Don’t I really need them? Apparently my GP can recommend I go back onto the programme. The truth was, I wasn’t using them enough. So I’m ejected. I feel a lot of things. Pride that I am progressing so well. Fear, that I might suddenly get bad again and then what will I do? I’m still fragile, I know that. I’m completely dependent on morphine and other medicines to get through the day. I’m weak after months of not being able to walk more than a block.
Who am I? Who am I apart from my disease? For a long time now prostate cancer has overwhelmed my personality or rather I saw myself in relation to the disease – withstanding it, getting round it, living with the moods that relate to it. Who am I apart from my disease? I guess I’ll find out.
April 13, 4:06am
I got something in the mail that I’d normally think was kitsch – a card from the funeral people who did for my mother. Amazingly they had the death-date. One year today.
So much has happened in the interim that I looked at the date, cursed myself as an unfeeling son for not knowing – or rather for not remembering the date. In some ways it hardly seems physically possible because so much has happened in the interim.
One of the curveball questions Kim Hill threw at me during our interview was: if you hadn’t been spending so much time looking after your mother, you might have taken better care of yourself – that is, recognised your cancer and got early treatment. I dismissed this out of hand. The nature of prostate cancer is that it is a silent disease. Unless you’re tested for PSA you don’t know what’s happening in there.
But did I wear myself out looking after my mother? Incontestably. The long slow weight of looking after someone hesitating before the point of death is devastating. And surely there is a silent statement in the fact that since April 12, 2017, I fell so ill I almost died – or if I didn’t almost die I was so sick I hesitated before the brink. The huge drama of this sickness overwhelmed my life. My mother sped into the distant past as if tugged away by a typhoon. I limped, hobbled, pulled myself along on a walker day by day.
Bess, kind Bess, did not fade away. If anything she helped me by modelling how to go along the way with grace. And fortunately I had written most of Dear Oliver so that the book existed. Bess’s death became the final arch of that book.
Why did I not remember that today was the date of her death? Because I am ravenously living. I’m alive. I’m full of plans. I met a friend for coffee. I worked on a short piece of nonfiction. I picked Doug up at the airport. I met a lovely old friend who gave me the hugest – as he called it – “Hawke’s Bay gin”. How Bess would have loved it.
April 13, 1:43pm
A face with no eyebrows. Second to last chemo on Monday. Strange when your face changes.
April 17, 3:10am
I’ve decided to make Hello Darkness into a book.
A lot of people suggested it to me but I held back. But now that Dear Oliver is launched I lack a project. A writer does not exist unless he or she is working. But it’s more than this. Work blots out the cancer. It diverts my attention. I cease to be someone with cancer and become someone struggling with words, sentences, sense, meaning.
But it’s even more than that. I realise I created something with these postings – really without consciously thinking of what it was. But with Hello Darkness – and by this I mean all my postings on Facebook since the cancer drama began, not just the Spinoff edited version – I built something architectural which was, is, about surviving, living with, making sense of not only cancer but any life-threatening disease. A lot of the broader context was the response from readers. This kept the whole apparatus going. It wasn’t me writing into a void – it was me writing into a crowded house. That’s what made it, makes it, so lively. So alive.
April 20, 5:04pm
I awoke feeling very bleak and unmoored. Yesterday I’d grandly announced I’d go ahead and make Hello Darkness into a book and this morning I was assailed by doubt and an almost complete sense of exhaustion.
To be fair it’s only a few days since chemo so why am I getting ready to jump into the jungle, with a knife clamped in my mouth? Suddenly the whole project seems too much, too demanding, too vast. To create any book is an enormous enterprise and even granted that I have really written the book already it still seems such a vast undertaking I’m exhausted at the thought of it.
Go slow. Take it quietly. It was probably a mistake to announce the idea but I was busting with the thought of it. This is the other side of the coin: the author’s self doubt, the downside when you think you’ve been a fool and why do you take on such an amount of work? Dark thoughts provide the tar, maybe, which go into the mix.
May 1, 1:43am
So begins one of the busiest times of my life since I got sick. I go off to Wellington on Thursday morning and at lunchtime do a gig at Unity Books – that shop which is like a drawing room of intelligence, a fair space for the mind to find equipoise and sense and information. What an honour it is, a kind of intellectual version of Dancing with the Stars wherein you take the stage and produce whatever moves it is you wish to make.
That same evening I head over to the City Gallery and Little Queen is shown, a film I made in the 1980s. It’s many years since I’ve seen it. The film was made 34 years ago. It was peopled by friends and family acting as a small crowd waiting to see the Queen drive by in 1954. I’ll see the ghost of my mother, my father and friends when they were younger; children who now have children themselves. Little Queen is such a strange tough film it will be a time travel in itself to see it.
Then there’s my Auckland Writers Festival appearance on May 18 on the big stage at Aotea Square. My energy levels need to be sustained but also all that surrounds it: getting there, walking through crowds, talking, being among people again, no longer being an isolate living a quite severely created regime of work and cups of tea.
I have my final blast of chemo in the week in between Wellington and the Festival and I’m hoping I’ll be over those almost crippling days of fatigue. I cannot complain. I am a writer and that is my calling. A writer needs to meet his or her own audience. I cannot just stay in my room alone. I need the warmth of an audience’s breath. Besides I want to find out what people think, their responses – what they want to know from the author of Dear Oliver but also that strangest of all documents, Hello Darkness.
May 3, 1:35pm
The most staggering thing happened to me at Unity Books. I was presented with a $20,000 cheque as a prize or gift to mark the store’s 50th anniversary. The other recipient is Patricia Grace. I was so childishly over-excited that Douglas and I ran as fast as our legs could carry us to Nikau and ordered a bracing bubbly.
The $20,000 cheque was given to Patricia and myself for our writing but also a lifetime of social activism. This makes this award so special to me. All my adult life I have worked conscientiously for equality and improvement in the way we live life and I have never thought for a second of a reward. That’s what makes this award so precious to me.
It was done with superb craft. I had just finished doing my lunchtime gig and feeling at a low mental ebb when Tilly said they had an announcement to make about an award. It really only caught half my attention as I assumed it was some separate business. When she and Jo announced I was the winner of the Unity Books 50th Year Literary Award I was still struggling to catch up. I operated through a thin soup of consciousness so I seemed only half there. I was given the envelope which I fancied carried a small card saying congratulations. I thought it might contain a book token. When Tilly implored or rather ordered me to open it (it could have been Jo, my consciousness was still on catch up) I saw a cheque and then I saw the figure $20,000. My eyes then checked the written words as it seemed so unreal. It was at this point I became aware I had not only been given a great gift but I had also been seduced into an artful game of complete and utter surprise. Nothing in my entire life surprised me more utterly.
I have often thought of the other side of the coin: and this is the life of all artists – disappointment at not winning a prize, hurt at being passed over in awards. The dark resentments going back to childhood, a seething black blood of rage. We have all experienced this demoralising and destructive mood. It eats into the soul and sours all that is good.
Yet here was I crowing about my good luck, knowing other writers were equally suitable to have won that wonderful award. I can think of four or five others very easily. How do they feel? And shouldn’t I pipe down and just be grateful?
Winning as against losing is such a false dynamic. The very words are punishing. Who doesn’t secretly in their heart feel they are loser? And winning raises you onto an unreal plateau, as if the work you do has magically changed from what it was the second before.
But I have to confess to feeling all day as if I were glowing with happiness, as if I had actually been confirmed as being valuable in the arts/writing community – that I was somebody (as against the nothingness of my secret self.) I asked myself if I was given this prize because I had cancer. I did hope it wasn’t, as my cancer has not changed anything though it has led me into a wider and deeper public communication with Hello Darkness. Had I revealed myself to people so they felt they knew me, a me which to myself is variable, hardly transparent yet a self I have spoken through with an almost rash ease? I couldn’t answer that. The fact was, for whatever reason, I had been given that small old fashioned oblong of paper on which was written, in ballpoint, the majesty of a gift.
I could not help but jump into a sleigh ride of self and surf all day silvery and so happy I seemed to hear bells all around me peeling.
Having banked the lovely lucre (telling myself it was to be saved for something special) I found in David Jones an extremely beautiful Paul Smith leather satchel. I have to confess I argued to myself it was something I would always have to remind me of a certain day in Wellington, frosty and bright, on which I was given the greatest – and most delightful – surprise of my life.
May 6, 6:21pm
I have my final chemo session tomorrow.
May 7
It was as I walked up the short number of stairs to the chemo clinic that I recalled that urgent night, seemingly so long ago, when D and I had come to this same place, to see Maria Pearse, the radiologist, who had remained behind after work especially to see me. The whole building was dark, apart from the receptionist’s room which was lit like a boat on a lonely night ocean. I had no idea what was happening. We were coming to see a specialist, I knew that. But I had reached such an abstract state of pain that nothing seemed quite real. We went into Maria’s office. But let me explain. There are specialists with faces like masks, faces afraid to divulge emotion. Others like Maria are entirely human and I could see, glancing into her face, empathy, understanding, sense. Yet such was the isolation of my pain I could read the signs but they meant very little to me. We talked – about what I am no longer sure. But I do remember this: she said you are in a lot of pain, I want you to go into hospital. Before this she had looked through my symptoms on screen. As I have said elsewhere, they were coloured fiery flares, as if we were in a plane bombing Dresden and far below there were these incendiary explosions. All else was black and white. Even I understood that those flares were my cancer.
This was really the beginning of my hospitalisation for what Fritha, my oncologist today, called my “aggressive cancer”. I felt a curious relief to hear this. So many months later I had reached a point where I doubted I had ever really been that sick. Was it my queer proclivity towards self-dramatisation? Was my cancer in fact never really life threatening? This is what I thought, now I could walk without a stick (mostly), was no longer bowed with pain and had become the poster boy for recovery.
As we walked into the clinic there were others on crutches now, and I nodded to them gracious as a queen. I could walk unaided. I had gone through all the radiation, hormone treatment and chemotherapy they could throw at me. It was my last chemo. Was it possible to feel almost sentimental about it? I was lucky in that I didn’t suffer nausea: I did feel the horrible exhaustion which followed a few days later. But by now I was used to the cheerful casualness of the clinic. The elderly cadaverous man beside me had had his grandson go and fetch a pie from the cafe (mushroom and chicken, the grandson recommended). There were voices over the divide which were at the level of people talking at an airport (about a visit to Brussels). There was a discreet bustle of nurses attending to others in the clinic. It was a golden standard that no one was tragic. Everyone was upbeat, a little like people attending a funeral and making over-animated small talk while we waited for the main action to begin. So this was the end of my chemo treatment. The oncologist had told me what was to follow. Four hormone tablets a day to be taken on an empty stomach. They were meant to be as effective as chemo though it appeared there was no absolute science proving it. I felt curiously free: Fritha the oncologist warned me that I might feel flat. The great challenge of chemo was over. What was I facing now?
It was true of course. I had sharpened my resistance to overcome the challenge of chemo. I had lost most of my hair: my eyebrows had gone fugitive: I was the weight I was when I was in my twenties. Without my clothes I was skeletal, with an ugly belt of flesh on my hips which came from the Prednisone. But the fact was I was alive, I could walk, my cancer had been challenged, called to a halt – be it momentary or permanent, nobody knew. I could live with this impermanence: it was so much better than what I had been offered before. Now that long ago night visiting Maria Pearce seemed like a dream. I was freed into living my own life again. It was, to some extent, a diminished life yet it was also a life expanded in consciousness: I could not unknow: I could comprehend, understand and move forward. It was my last chemo. With luck I might never come back.
Peter Wells’s 2017 writings in the Spinoff series of Hello Darkness is a finalist in the best personal essay category at the Voyager Media Awards held on Friday night.
The Spinoff Review of Books is proudly brought to you by Unity Books.