Alright. There is frailness
in all our music.
Sometimes we’re broken
and it’s lost.
Sometimes we forget
for years it’s even in us, heads
filled with burdens and smoke.
And sometimes we’ve held
to it and it’s there,
waiting to break out,
walking back from the end.
“In Memory of George Lewis” – Lou Lipsitz
We were living our best lives, and we knew it.
We have always communicated well, DorkyMum and me. There was so much talk between us in the earliest days and nights, sounding out every reason our relationship couldn’t possibly last and, then, deciding that nothing else we could ever imagine mattered as much as the two of us and how we felt next to each other.
It has not always been easy. Real life never is. But now we found ourselves living on a windswept island far away at the edge of the world, a place almost too beautiful for words. Our son was continuing to astound us with his inherent kindness, his infectious laugh, his keenness for learning, words and books.
All the food we ate and the wine we drank was produced locally. We were living in a tall, rambling house with room for everything. Our closest friends from Scotland – and DorkySon’s Godfather – had miraculously moved to the same island and now lived just a half day’s drive to the north. We were both working from home, setting our own hours and making enough money to keep it all sweet.
This is our life, we said to each other. This is who we are and what we will be.
We were deeply, deeply happy.
I had been travelling hard for two clients on the mainland of Australia, up and back, usually on the same day, to either Sydney or Melbourne. I developed a lingering cold I couldn’t shake. This was the earliest days of something called coronavirus, and our GP scheduled a painful swab up my nostrils and down the back of my throat. The test came back negative.
The gland in my left neck became swollen. I wasn’t too concerned. The GP was, a bit. She sent me off for CT scans. Nothing. Then, to be sure, a core biopsy.
“Sections show well differentiated squamous cell carcinoma. There is a suggestion of necrosis at the periphery of one core.”
The hardest thing I have ever done in my life was telling my son I had cancer.
I asked him to sit down at the kitchen table when he came home from school.
“Don’t tell me,” he said. “You have Covid.”
I said no, not Covid. I have cancer
I watched his perfect 11-year-old face collapse in instant recognition that this was a horribly wrong thing. He went upstairs to his room for a little while. Then he came back down and looked me in the eyes.
“Promise me one thing.” His voice was strong and certain.
“Promise me you won’t die.”
DorkyMum has helped me deal with semi-major medical issues undoubtedly more often than should have been required in a normal marriage. (Disclaimer: this is not a normal marriage). She has nursed me through two knee operations, a rebuilt shoulder, the lingering effects of a broken neck and various scrapes and bangs requiring more than a band aid and antiseptic cream. She has a natural propensity for care, for getting after the things that need doing and paying close attention to not just the hurt parts, but to the heart and spirit, as well. That lovely aspect of her character helps explain why DorkySon feels so happy and secure.
This was different. This was pretty much outside our hands.
The ENT guy said, I think I know what this is. I want you to see my friend, Raef. He is a brilliant oncologist. He will get you right.
Raef turned out to be an Egyptian cancer specialist who has trained and practiced in the United States, the UK and Saudi Arabia. How he came to be living and working in Tasmania was never explained. But he was certain in his prognosis.
You are strong and fit. Your age is not that relevant. I want you to complete a radical, intensive radiotherapy treatment. I think you can do this.
He showed me studies that strongly suggested chemotherapy was not beneficial for this type of cancer in men my age. DorkyMum and I left convinced, reassured that we at least knew the path forward.
Two nights later he called me at home. One of his colleagues at the clinic had challenged his prognosis, was certain I needed to add chemo as part of the treatment plan.
It must be your decision, he said.
We consulted Dr. Google. Chemotherapy, and especially the long-term effects, sounded awful. Then one of those things happened. DorkySon went to a birthday party. One of the other kid’s moms was there. She works with cancer patients. We described our dilemma.
Trust Raef, she said. He is pretty amazing.
Can you get lucky having cancer? I did. Our small island shut its borders down hard and early in response to the global pandemic. There was one serious outbreak in the north west that was quickly brought under control. Unlike the rest of the world, our hospital beds, doctors, nurses and technicians were not being impossibly overwhelmed trying to save people dying from the virus. Which meant there was time and technology for someone like me.
The cancer was in my mouth. More specifically, my left tonsil and lymph gland. It’s a tricky part of the body to treat, all sorts of passages running up to the brain and down to the chest and lungs. Not the neighbourhood for mistakes.
Enter the Varian Truebeam, a $5 million machine that fires a concentrated pulse of deadly radiation within a ¼ millimetre of the target. Just happens there was a new one of those at the local cancer treatment centre. It was Raef’s job to program the treatment, to tell the machine where to cook, how hard and how long. A recipe to kill malignancy.
A kind and smiling nurse told me before the first session that this was not going to be easy. There would be some serious side effects. Pain. Quite a lot of it. I would lose the sense of taste and the ability to swallow food without a real effort and a glass of water at hand. My mouth would always be dry. Radiation burns and bleeding on my neck, inside and out. They would help me as much as they could, prescribe unguents, salves, a soft diet, all the morphine I could manage. But I needed to know the reality.
You don’t do something like this alone.
Standing closest were DorkyMum and DorkySon. They saw it all, every day. Every night. Worse, they were both totally immersed in that terrible thick unspoken fear, the very real sense that things could go really wrong. Finally, horribly wrong.
They never backed up an inch. Neither one of them.
I believe women make close relationships and support each other better than men. As word got out, an invisible coven began leaving things on the doorstep. Bottles of wine. Fresh baked Anzac biscuits. Flowers.
The staff at the cancer centre were kind and thoughtful. They found a way to make me laugh or smile before every session. The Cancer Council sent helpful information, and then the youth service, Canteen, hooked up with my son. He was introduced to a counsellor and they spoke every two weeks on Zoom. She gave him so much comfort and courage.
My family. My brother, my sister, cousins, nieces and nephews. All right there.
Emails started to arrive from all over the world, oldest friends first, then other people I hadn’t spoken to in decades. They all said the same things.
You’ve got this, mate. You are the strongest man we know. We have your back.
We believe in you.
We love you.
Ultimately, you do this alone. They hot mould a piece of porous green plastic that fits like a second skin over your entire face and upper chest. I would strip off my top, climb onto the table and they would carefully place the mask on me and snap it down to the treatment bed. I was utterly immobilized.
Then they would all leave the room. Just me and the machine. It makes a purposeful, somewhat hollow noise. Green lights swing slowly over you one way, then back the other. In real time, the whole thing takes about two minutes. Laying on the table, under the mask, it feels much longer.
Seven consecutive weeks, with weekends off. The first month was okay. Then the real pain started. I lost track of time. I lost weight, just over 12 kgs. I wasn’t big to begin with and now I began to look like, well, a cancer patient. When the last session was finally over, I weakly rang the bell and headed home. All the energy in my life was gone.
Waiting is a big part of cancer. Waiting to be diagnosed, waiting to be treated, waiting until the doctor decides you are finally recovered enough for another PET scan to assess your condition, whether the treatment actually worked or if other, more drastic steps would be required.
It was seven months almost to the day between the first scan and the most recent. And then we had to wait four more days before DorkyMum and I could sit in Raef’s small office and learn the outcome.
The happiest thing I have ever done in my life was stepping out of our car and telling DorkySon, who was standing in the garage waiting, that the cancer was gone. That everything we had been through, all of it, had been worth it.
The happiest thing I have ever done is tell my son that now we can go on.