Nanoparticles in Brain Metastases Photo: National Cancer Institute
In Sickness and in Health - episode 1
You would think everyone would be eager to talk about it. After all, it kills more New Zealanders than anything else. One out of every three of us develop some form of it during our lifetime. Sixty people a day in this country are told “You have cancer.” And it costs over $800 million of our taxes every year to try and manage it.
But for all that, cancer remains the elephant in the room, despite all the efforts to get people screened and tested and educated and able to talk about it. And when it happens to you, as it did to me without warning, I was more ignorant, and more frightened than most, about what to expect.
A colour illustration of Alice by John Tenniel Photo: The British Library Board
Happily I had treatment that has worked, hopefully. It no longer defines my life, but I’m left with an experience that took me to places I’d never been before. I’m left feeling like Alice in Wonderland, having been dropped down a rabbit hole into a strange new territory that I’ve passed through but will not let me go.
This is a series about what I found down that hole. It’s not confined to people living with cancer. I think it might apply to anyone who has faced some sort of suffering, crisis or tragedy that leaves your life no longer as it was and finding you can’t go home again.
I don’t want to be dramatic about all this. It’s not an invitation to explore death’s door. My story is nothing like as big as the survivors you see on TV who have been to hell and back via shark attacks or head-on collisions and live to walk again.
Photo: Wikimedia Commons
The territory I want to describe is more modest and mundane. I got to know about it while sitting in hospital waiting rooms, or waiting at home for letters to arrive announcing the next appointment with a specialist, or talking to medical staff whose optimism and cheerfulness far exceeded my own. Positivity on high beam.
Over the months of treatment I’ve learned to live in this new space with its distinctive ways of talking and behaving with strangers who have nothing in common with you, except a similar condition and a shared journey.
It takes some of us a while to get on board this ride into the unknown. My first reaction was denial.
For a while I pretended it wasn’t happening, like a motorist caught speeding and arguing with the cops. “The camera isn’t calibrated properly. Someone else was driving, Officer. I was on my way to a funeral.” But that sort of denial is short lived and silly. So it’s a relief to get real and explore your options.
My first entry into this new territory was via the parking lot at Auckland Hospital which like the rest of that city passed its overflow point years ago. Anywhere else, the driver I was holding up behind me on my back bumper as I waited for a space, would have been spouting road rage obscenities. But not here outside the Cancer and Blood Services building where fellow patients rule. I got out of the car and apologised. “I’ve been round the block twice and everything’s full,” I told him.
“Don’t worry mate,” he replied. “Auckland’s full.”
That laid back, laconic manner was a taste of things to come.
Photo: Pixabay
The people I met in the vast waiting room where I spent so much time, caught you up in conversations unlike any I’d experienced before. There was an instant common ground that bridged every gap of age or background.
“Is this your first time?” “How far have you come today?” “How many more sessions have you got to go?” “Where did you get that T shirt?”
There was also a connection that translated into respect for silence. Where your neighbour looked too distressed or unwell to talk, you knew to keep quiet. Conversations were never forced as they often are in settings where there are appearances to keep up and others to impress. All that social pressure disappears when you fall down the rabbit hole together.
But there was also a freedom to ask questions in that waiting room. It came I guess, from the unmistakable bond of sympathy between this assembly of complete strangers.
“Where did you get that hat?” I asked Sunny from Manurewa, who I’d got to know while waiting together. Next day he brought me one, just like his, emblazoned with a motor oil logo. I felt right at home. Lots of people wear hats and head scarves in this waiting room where the sun doesn’t shine.
Photo: collage from Pixabay
Conversations about hats and the time of day led on to deeper things. I listened to the most extraordinary stories over the months of waiting. Unguarded testimonies of lives well lived and regrets over mistakes made, poured out to strangers in the knowledge you’ll probably never see them again. From one new neighbour I heard the story of a fishing trip that wandered into a marine reserve and his abiding guilt about that.
Not all of us want to talk about our lives so openly. But given the current media rash of survivor stories, I’m always surprised by how popular they are. I guess we take comfort from watching someone else go through what we hope will never happen to us, especially when they do it with humour and grace.
It’s the humour that I wasn’t expecting. In the weeks after 9/11 and the catastrophic loss of life at the Twin Towers, American comedians watched each other to see who would be the first to make a joke about it. And unbelievably, several did. Just as some have found something to laugh about in the Nazi Holocaust, notably in Jewish satirical magazines. A recent movie comedy called the Death of Stalin tackles an equally unfunny topic.
Radiation treatment room Photo: Pennsylvania State University
I looked in vain for anything remotely funny in the radiation treatment room, until the patient ahead of me emerged from his first encounter with the ionizing radioactive beams, and asked his wife whether he would glow in the dark. Not surprisingly, she didn’t laugh.
There’s a movie waiting to be made about all this. But I’m settling for a radio series. I hope you’ll come along for the ride and explore with me what you can do when there’s nothing that can be done, when you have to put yourself completely into the hands of medical people and their knowledge that you don’t begin to understand, even if you try to look up your condition on the Internet. I don’t recommend it.
