Simon Wilson’s cancer diary: Fear and hope in the radiotherapy room

Sunlight fills the waiting room. It’s a beautiful space, with a long curved wall, all glass, looking out to the north, where a raggedy garden enclosed on three sides slopes away, mature pohutukawa filling the middle distance, the back of the Starship building looming beyond.

Welcome to the radiation oncology wing at Auckland Hospital.

I’ve been on “hormone therapy” for 18 months now, reducing my testosterone to shrink a prostate cancer tumour. I like to say it’s made me a much nicer person, although I do sometimes think my patience is being unreasonably tested.

Apart from being nicer, I’ve put on weight, I get tired more easily, and several times a day I find myself drenched in sweat. Hot flushes.

I know, no complaining allowed. I don’t. But hey, testosterone. Who needs it?

• Part 2: A urethra runs through it
• Part 3: What you keep, what you lose
• Part 4: To cut or not to cut
• Part 5: How the surgeons will slice me open
• Part 6: A pretty good scar
• One year on: Into the blue

Besides, the treatment works. The tumour turned up in the exact same place where everything was carved out of me in early 2018. I wrote a cancer diary about all that. But then it shrunk so much it wasn’t even showing up in the scans or the blood tests.

Still, something was there. So in the weeks before Christmas my radiation oncologist put me through a course of radiotherapy. Every weekday for 33 days, there I was, in the radiology waiting room at Auckland Hospital.

Radiotherapy. Serious cancer treatment. Gulp.

CANCER OUTPATIENTS get their own carpark, which is thoughtful of the hospital administrators, except that in the late morning it is invariably full, which is a little bit stressful.

Mostly, we walk in and out unaided. There are lifts, but also a pair of circular staircases that lead down from the entry level to a sunken garden of ferns and palms, and to a corridor that takes you to the waiting room.

The stairs are a test. You use them until the day comes when you understand you are now too frail and opt for the lift. Or, perhaps, the day comes when you don’t recognise your frailty and fall down them. In the Covid age, you don’t touch the handrail, which makes that tumble more likely.

I liked the stairs, although I’m slightly surprised they’re allowed. It was my goal to use them every day until the end.

Everyone treats you well. Auckland Hospital handles patients with all kinds of cancer everywhere from Pukekohe north, so the receptionist is processing hundreds of people a day, maybe a dozen of whom are on their first appointment.

We step hesitantly to the desk, doing our best not to be frightened, silently handing over the referral form. She looks at us with a normal gaze and speaks in a normal voice. She provides functional efficiency so as not to add to the anxiety. She does it with friendliness and somehow she indicates, without saying a word about it, that she knows, she cares, she’s sorry but most of all she’s there to help.

It’s a very good way to talk to someone with cancer.

Most patients bring a family member or friend, at the start and sometimes right through, but almost always it’s the patient, not the support person, who does the talking. We like to show we’re not dead yet.

Then we wait. Most of us look pretty good, pretty normal, apart from the glazed eyes and the way everything we do is moderated. No sudden movements. No loud noises. Some of us are young, with friends or family who distract themselves with Instagram and making cups of tea. Some are very old and frail, with their support person sitting beside them, as frozen as they are.

In the days I was sitting there, the pohutukawa flowered. Suddenly, you see it, over there, up there, all down there. People say the bloom is redder this year, but I don’t know. It’s very red, but isn’t it always?

The receptionist has perfected the art of calling your name across the room without even a semi-decibel of superfluous noise. It’s like she carefully throws it to you, a silken rope with a noose. It lands lightly around your shoulders, and up you get and off you go, to your designated machine.

For most, it’s a wander down the corridor and down some more stairs. You’d do it with a nonchalant whistle, if that wasn’t a sure sign of panic. For some, it’s a shuffle. There are patients who have lost their hair and every sense of busyness, and walk as if they’ve wrapped their bodies up and are carrying them carefully, each step just the thing you have to do so there will be another. We’re all on the same path, we know that, we’re just standing on it in different places.

THERE ARE six machines, each in its own room, with rostered staff and its own little reception area. We change into hospital gowns, tied at the back if we can manage the knots, and carry our clothes in plastic shopping baskets. And wait again, for our turn in the room.

Fear, courage, incomprehension, hope. And grace, too. Moments of exposure and a capacity to accept it all, when a person’s loveliness, as they sit there in the badly tied gown, suddenly shines. Most of us are doing our best to treat everything as normal. You can do it if it’s just a thing people do.

The first time you see an in-patient is a shock. They’re wheeled out of the lift in their hospital beds, small thin bodies, sometimes twisted with pain,asleep or with wide eyes staring at a world and its new truths the rest of us cannot see.

Are we really all on the same path, but just standing in different places? You do not want that to be true.

Outpatients and staff and visitors wear masks for the Covid, but not the patients in their beds. Not the sickest people.

The masks stop us smiling at each other and there’s no talking. It’s as if there’s a sign up about it. Is it because of the masks? I don’t know.

The machines are numbered: MV 1, MV 2, etc. MV means megavoltage.

There’s a unicorn at MV 1, a balloon with shiny coloured head and shoulders, filled with helium, hanging at the entrance to the treatment room. On the whiteboard the staff ask us to vote for our favourite name. Sparkles is the most popular; Sprinkles and Princess are doing well too. No one has suggested Unicorny or Corny or even Corny McCornyface, although there are a couple of votes for Bob.

It’s the machine they use for paediatric patients. Children who need megavolt radiation.

The therapists are brilliant: friendly and highly functional and good with jokes. One of them, a man with a congenital condition that means he has only one hand, advises against washing your hands. Why not, says a colleague. Well, he says, if you do too much of that your hand will fall off.

HEAD AND NECK patients have a protective helmet, a latticework of light green plastic moulded to the shape of their head. The helmets all sit in a row on a shelf in the treatment room.

Prostate patients get tattoos: before you start the treatment course they scan your abdominal region and mark you with three little dots, one on each hip and one in front.

The scans produce three-dimensional maps of your body, onto which they draw contours and complex perimeters, marking out the radiation target zone.

I texted my oncologist before we started, just the nervous checking in, and we talked by Zoom. He pulled up all the scans and showed me the bright green lines tracing those perimeters. Tricky, in my case, because the tumour was very near my intestinal wall. Yes, I agreed, let’s both do all we can to avoid the bowel being ruptured by the radiation.

In his case, that meant drawing those perimeters very precisely. In my case, it meant I had to turn up every day with my innards in exactly the same condition as they had been in that early scan: bladder full, but not so full as to invite disaster, and bowel empty. It was not easy.

The treatment room is large and bland, with a block of ceiling tiles replaced by luminous perspex squares with a scene of trees: palms, jacaranda, each room different. To help you imagine you’re lying on a beach or in the bush, I suppose.

In reality, which you remain acutely aware of despite the palms, you lie on a narrow bed, knees supported, a therapist standing each side of you, and they raise it up with a hydraulic lift, their faces close to your body and green laser lines intersecting across your abdomen.

“Wriggle down a centimetre or two,” they say, then “Don’t move, we’ll do the rest.”

They tug at the towel you’re lying on, very slightly. One of them places their hands on your hips and pushes and pulls you a little. You think of flesh sagging back to where it was, but they seem satisfied. Sometimes the hands are warm, sometimes cool, once a little clammy. Finally, they have everything aligned to those tattooed dots. Your three little mementos.

Then they do another scan to check your bodily prep has been good enough, and you wait. The bed nudges a bit under you, fine tuned by remote. They play the Breeze.

Sometimes it’s surprising, a ballad from the Rolling Stones, but mostly it’s not. The Christmas season started while I was there and that meant Michael Jackson and I Saw Mommy Kissing Santa Claus, which turns out to be a creepy song about a little boy who wants to destroy his family by telling Daddy what a bad person Mommy is.

The machine clicks and whirs, the red light glows and a monstrous alien eye on a fat stalk looms up from beneath the bed, rolls over the top of you and sinks away down the other side.

Three times it rotates completely around you, clockwise, anti, clockwise again, irradiating you all the way, while you lie as still as you can. You’re allowed to breathe, but only because you have to. The breathing must affect the precision, but it’s the risk they take.

The reason it rotates, rather than remaining still like the x-ray machine at the dentist, is that the radiation is so mega, if it didn’t move it would burn a hole right into your flesh.

Your buttocks get a little warm. Day after day, your abdominal skin grows pink. At the nursing station they have creams and potions. Some people do get burned.

You don’t see the specialist, or any other doctor. They’ve done their work deciding you need this and plotting exactly how you’re going to get it, and then it’s down to the smooth operation of the therapists and nurses.

The ethic is this. Nothing is too much trouble. None of us ever did anything wrong, even if you turn up late or the backwards gown has you in despair or you haven’t got your bladder right, again, and the waiting room is filling up. They know this is frightening. They know there is pain. They’re on your side.

You speak with them in your new private language of bowel motions and the like, private because who else would you talk to like this and who else would ever want to know? But they do want to know. It’s their job. They’re so matter of fact about it, these women and men, coming and going with their water bottles and their sneakers because they’re on their feet all day, their jokes and gossip and expertise and their care. For you. They are so lovely.

THE RIGMAROLE of it. Stop eating now, start drinking now, all gauged to fit with a different appointment time every day.

Each day I reset the alarm on my phone to make sure I started the prep when I should. It’s not a noisy alarm but it is a noise. Once, at a conference, I left it on a table when I left the room and when I came back it was buzzing. Yes, people did notice.

It’s tiring, but not exhausting. It’s uncomfortable, sometimes distressingly so: your bodily functions are ruined.

Your tolerance for food diminishes. Before long I could eat only low-fibre: cornflakes and tinned fruit for breakfast, white bread egg sandwiches for lunch. I cut out everything with stalks, skins, seeds, nuts. No garlic or spices. No dairy. No Christmas treats.

My family have been so great, looking after me, putting up with all that. Love rises up and it’s pretty cool.

I stopped drinking coffee and spent two days with a blinding headache before I realised why. I started the third day with a half-and-half with decaf. Second cup of the day, just decaf. That worked.

I couldn’t drink anything effervescent: no beer, no carbonated water, no soft drinks. No tonic, although gin is okay. I really didn’t feel like gin.

“Did anyone tell you it would get worse before it gets better? Probably for a couple of weeks,” a therapist said at the end.

Thank you for putting it so bluntly, I said.

It didn’t get worse, not really, except every couple of days I’d think right, it’s not so bad, I’ll have some cheese, maybe a creamy blue and lettuce sandwich, and it was always a mistake.

During the time you have cancer, other people have it too. Friends, people who are not friends, exactly, but you’ve known them all your life, their lives marking time with yours. When you bump into them or send each other emails, your conversation cuts to the heart of things. You don’t have to beat around any bushes because this moment now is what you have.

News of Bill Gosden’s death arrived when I was eight days into treatment. I was a student with an cinema ushering job when Bill got the film festival humming in Wellington, and that meant I saw everything and knew him from way back then. He did that job brilliantly for 40 years, a cultural hero, a smart and lovely man, only a little older than me.

You want to think the plateau you’re standing on is good, firm soil, fresh grass, a breeze in the trees. You’re coping with everything. You’re not ready to discover you’re sinking into a bog.

I think about it all the time. When I was first diagnosed, three years ago, I couldn’t stop myself listening for songs I want played at my funeral. I still can’t. It’s become a very long list, I’m sorry. People might want to bring a sleeping bag.

If you’re doing chemo, says the sign, please remember to flush the toilet twice. But what if the person before you is, and they didn’t? What lurks within?

On my second to last day a man turned up and wanted to talk, in that place where none of the patients talks.

He’d had a tumour in his head, he showed me the scar but it was under his hair and you could hardly see it. I almost asked if he wanted to see mine, a vivid crease leading down from my belly button, but thought better of it.

He seemed confused, about where to be and when to be there, and it was hard to tell if that was the tumour. It was also hard to tell if he was in a worse situation than me. Both the same, I decided. He said you get strangely calm, don’t you. I said yes, I think it’s denial. He said he thought it was acceptance. “If you’re going to die, you’re going to die.”

I thought that meant he was in denial, which meant I was right, but now I’m not even sure there’s any difference between us.

ANOTHER DAY , another day. In the underside of the flat verandah roof outside the waiting room, sparrows are building a nest. They enter through a hole they’ve found in the cladding, flitting to the entrance with straw and twigs trailing from their beaks, hanging upside down and then disappearing.

A wide pathway, more of a patio really, runs around the curved window under that verandah. On the far edge of it, facing the raggedy garden beyond, is a park bench. It’s old, the paint faded white, rust and broken wood showing through, and it just sits there. A sign on the door says this is not an exit.

So we sit inside, quiet and still, while the empty park bench waits outside, its back turned to our blue masks and anxious eyes. It’s like the waiting room for whatever comes next, and what will that be? Freedom, a release back into the world? For how long?

The bench waits.

During treatment, you lie on the bed thinking about your breakfast, summer swimming, the perfect email to send your boss, everything except what’s happening to you right here right now, oh my god.

And when you walk out it’s all gone, you have no thoughts, you just go home. Most days, I rode my bike. Like the staircase, it was a test, and I managed them both to the end. The ride along the Grafton Bridge, the city views and no cars, is a good thing in the world.

Four days from the end, though, I stopped on my way home twice, just to sit on a park bench, not because I was exhausted, but because I just needed to stop.

Every day, it feels like it’s sucked something out of you. The thing that makes you eager. Your spirit force.

The oncologist said he was expecting “a complete cure”, which seemed a little rash. Can you cure cancer?

They don’t know. There’s no scan at the end to see if it’s worked. When my body has calmed down I’ll go back to the regular blood tests, and if they don’t show anything, that’s good. Not exactly cured, but good until it’s not good.

A day that may or may not ever come. There’s no way to know. When I had the surgery three years ago, my surgeon told me this was an illness to manage, not one to give up hope over. That still feels good to me. I’ve got things I want to do so I’m going to do them, though I am aware I’ve been telling myself that right through these past three years.

On my last day I gave the therapists gifts. Thanks team, thank you, thank you from the bottom of my teary-eyed self. A card for their wall of cards, and Christmas food: mince pies and chocolate, although it didn’t seem like enough. Perhaps nothing would. If I had cooked them a turkey with all the trimmings and worn fluffy reindeer antlers and sung them Jingle Bell Rock, it would not have been enough.

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