Simon at the ASB
Every now and then I might get an ache, not sure why, but it is always in the back of my mind. I’ve gotten through it, but is it like a time bomb, will it re-trigger and in what form? Will I pass it on if I have kids? Cancer has been rife in the family in one form or another. Grandparents, aunties, second cousins. It is just in our family.
– Simon Peters on surviving leukaemia
Simon turned 40 at the weekend, a milestone celebrated at the ASB where he was surrounded by mates, men he’s known for years. Turning 40 might seem a simple milestone, but not everyone makes it. Growing old is a privilege. Most people take it for granted.
During the night, and though I had questions, I didn’t ask questions about his fight with leukaemia. It’s a topic Simon rarely talks about. Beating cancer was just something he did when he was young. It’s a great triumph, one Simon usually keeps to himself. He’s not ashamed or embarrassed, and nor should he be, he just doesn’t want unnecessary attention.
When I found out in the early nineties, it was through someone else. I was interested, but not enough to ask him about it. Simon and I didn’t have a serious discussion about leukaemia until February 2010. It wasn’t I didn’t care, a battle with cancer is personal, and I wasn’t sure if he wanted to talk about it.
In 2005, Simon was interviewed by ABC Mackay, speaking bluntly, with great accuracy about leukaemia. His matter of fact attitude reassured me that his fight wasn’t a taboo subject. I felt silly for thinking it was.
In 2010, Simon told me everything he remembered about the fight, and the first time someone suggested there could be a problem. In 1976, standing at a supermarket checkout with his mother, Carmel, the check-out chick pushed through the groceries, looked at the little guy and smiled.
‘Your son looks a bit pale,’ she said to Carmel.
Carmel took Simon to the local doctor, who diagnosed anaemia and took a blood test. The results were devastating, too many white blood cells. Simon went to Royal Brisbane Hospital for more tests, which confirmed leukaemia. In 1976, leukaemia wasn’t exactly a death sentence, but it killed more often than not.
Simon’s memory is dulled by age, but what he remembers is harrowing.
‘I was laying on table, having needles jabbed into my hip, blood going everywhere, needles into my spine.’
Hypnotherapists claim there are cures for bad memories. People can be taught to recall incidents from their childhood, or any other time of their life. A basic theory suggests each memory is stored in a file. People can remember anything if they find the right file.
It is doubtful Simon wants to find the right file again, not after our long chat two years ago. The memories would be painful, getting sent to hospital when he wanted to stay home, pain, the tears and fear of what was happening. Four year old children would have little understanding of cancer.
During our talk, Simon mentioned the pain, needles in his hip and back, administered without anaesthetic, the agony of chemotherapy and radiation, crying from fear and loneliness.
‘I just remember big needles,’ he said. ‘They hurt like all hell.’
He discussed intensive treatment, his body assaulted with drugs to beat the cancer. He’d stay in hospital for weeks then go home for a few weeks. His hair fell out. Throughout the treatment, he feared the hospital. Wayne and Carmel feared he might die.
Home was where he wanted to be, and no matter how well he behaved, he was dragged back to hospital for more treatment.
‘I thought my parents were taking me to hospital because I’d been naughty,’ he said. ‘So I did everything I could to be good but they still took me.’
At the weekend, I wanted to ask Simon how it felt to turn forty after what he’d been through, if it made the milestone more significant. Simon might’ve shrugged. He could’ve given answers most people do when they turn forty, it feels strange, I can’t believe I’m forty, and he probably hadn’t thought about it much more than that.
I thought about asking if he ever thought he wouldn’t make it to forty, but midway through the night, I didn’t want to ask. It seemed a stupid question. Simon is a positive, happy person and doesn’t need to think like that. Invariably he would think about leukaemia, but he doesn’t need to think unnecessarily about it.
So we celebrated his milestone birthday as we have any other, without discussing the toughest fight of his life, when he was in and out of hospital from 1976 to 1984, and his relief at twelve years old when the final series of blood tests indicated remission.
‘Back in 1976 leukaemia was basically a death sentence,’ Simon said. ‘I was lucky to make it through. People still die from it. It was like coming out of jail when I got the all-clear.’
Simon had been in remission for six years when I met him. He’s been in remission now for twenty-eight years.
Leukaemia is cancer. It kills people. The disease develops in bone marrow then spreads throughout the body, affecting the blood, creating too many aberrant white blood cells. Initial classification is simple, the diagnosis, which relates to abnormal cells, is either chronic or acute.
Chronic leukaemia is defined by an excessive build up of mature, abnormal white blood cells, which continue multiplying until they interfere with other cells. Acute leukaemia is worse, a blast of immature white cells constantly dividing far quicker than the body can handle.
Symptoms of leukaemia include nausea, easy bruising and abnormal bleeding. The disease suppresses the immune system, which can cause exhaustion and weakness, leading to opportunistic infections like anaemia, diarrhoea, mouth sores and pneumonia. Leukemic cells invade the spinal cord, causing dizziness and headaches. Mutant cells can enlarge internal organs.
There are several categories of leukaemia, according to affected blood cells. In lymphoblastic leukaemia the cancer forms in bone marrow, creating excess lymphocytes, immune system cells which fight infection.
Myeloid or myelogenous leukaemia affect marrow cells that form red blood cells, white blood cells and platelets.
A complete blood count is the simplest way to detect leukaemia. Doctors count the number of red and white blood cells and platelets from the sample. The amount of haemoglobin is measured. A peripheral blood smear is used to search for blast cells and numbers of white blood cells. Testing for changes in chromosomes and lymphocytes is called cytogenic analysis. Doctors also conduct tests to see if internal organs are affected.
A sample of bone marrow, generally from the hip, is examined by a pathologist to test how far the disease has progressed. A biopsy of a lymph node and spinal taps are also used, depending on the type of leukaemia.
Leukaemia is commonly treated with chemotherapy and radiation therapy. Both are brutal. Patients develop mouth ulcers, lose weight, their hair falls out. Often, the treatment enlarges the spleen, which needs to be removed. When high doses of chemotherapy or radiation destroy bone marrow production, some patients require a bone marrow transplant.
The disease doesn’t discriminate, affecting children and adults.
Last week, on Friday, it emerged that Australian golfer Jarrod Lyle had been diagnosed with leukaemia for the second time. When Lyle was 17, he fought acute Myeloid leukaemia and beat it. He’d been in remission for thirteen years. His first baby has just been born. He was playing on the American pro tour.
Now leukaemia is back. His life is on hold.
Simon has had worrying moments since the all-clear in 1984. In the early nineties, his left boob grew steadily, the tissue removed surgically. Doctors said it was unrelated to leukaemia. Five years later, Simon felt swelling in his balls and scheduled another appointment with a doctor, later getting the all-clear.
As the night grew on, I felt silly for wanting to talk to him about leukaemia again. The underlying thought, maybe he mightn’t have made it, was fatalistic and irrelevant because he did make it. Hypothetical questions are wasted on beer and cheer.
Besides, Lyle has cancer again, and I didn’t want to think about that.
To know Simon is to know class, a loyal, friendly man who improves any evening. Simon is uncomplicated. He loves a drink, loves sport, is funny and though he’s short in stature, he’s big in personality.
Since 2005 I’ve raised more than $2000 for research, in his honour, but Simon is worth much more than that, so if you’ve ever met him, make a donation.
And if you haven’t met him, understand this. I wouldn’t waste words on him if he wasn’t worth it. This is the second Ramble about his fight with leukaemia, which highlights the impact he had on my life. That is worth any amount of money and hair.
Two weeks ago, a woman I work with gave me $20 to help with the fundraising. Her friend has leukaemia. Her friend has children. ‘Thanks for doing this,’ my colleague said.
If you have a spare five bucks, make a donation, if not for Simon, then the next four-year old kid who gets it, or the next mum, brother, father, friend or relative who is diagnosed with leukaemia.
Take a moment to think about the doctors who treated Simon, and what a magnificent job they did. In 1976, using methods that may seem primitive now, those doctors treated a four year old, working tirelessly to make him better.
As much as Simon needs to be recognised for his fighting qualities, his doctors need to be congratulated, as do all doctors currently treating patients who have leukaemia.
‘What the doctors did back then is why they can treat it better now,’ Simon said. Money for research helps, too.
Leukaemia attacks randomly, causing a quarter of all childhood cancers. Usually the disease isn’t inherited, it just happens, and there is no effective way to prevent it. Some people get it, others don’t.
It comes back, too. It really is a bastard.
And that’s why I’m shaving my head again.
To make a donation, you can find me at the link below by typing in my name – Matt Watson. I’m the one from Queensland.
Hey Matt… this is a great story and well done for bringing more attention to this horrible disease. I too have seen the effects of Leukaemia (albeit from a distance) and how the lives of children and their families are changed forever. As I understand it, the Leukaemia Foundation receives no on going government support, so every $ helps. Congratulations for your continued support… I have donated to you again this year, and I will continue to donate to the Leukaemia Foundation in future and there wonderful efforts in helping familes through what are very difficult circumstances. Kate x
