For Trine Kirkegaard Simpson and her husband Matt, 2012 should have been one of the best years of their lives.
The couple, who met backpacking before marrying in 2007, were living in Singapore and had just welcomed their second son Oliver.
In the months following Oliver’s birth, Matt began to have subtle but increasing indigestion, bloating, stomach pain and heartburn; something that Trine said in hindsight should have raised alarms.
The young couple put it down to the stress of starting a new job and raising a young family, but when a friend pointed out Matt's excessive weight loss, Trine says she suddenly realised how tired and gaunt he appeared. It was almost as though she was looking at a "stranger".
“You are blinded to it when you are living with someone everyday,” says Trine, who now lives in Melbourne. “Our everyday life suddenly was catapulted into a parallel universe.”
After three months of testing through a gastroenterologist, Matt was diagnosed with linitis plastica in October 2012.The extremely rare form of cancer infiltrates and expands in the stomach lining, making it impossible to eat as the stomach shrinks and the tumour grows. Trine says the diagnosis was both “devastating” and a “relief” for Matt, who embraced a plan of action after spending months worrying about the unknown source of his symptoms.
“We were never given a stage because with this cancer by the time you get diagnosed you are inevitably stage four...roughly one in 10 survive after five years.”
The GI Cancer Institute estimates 2,246 Australians are diagnosed with stomach cancer each year, and more than 1000 will die from the disease this year alone. Males are almost twice as likely to be diagnosed.
“You don’t have time to weigh up your options,” says Trine. “The odds are stacked up against you, and treatment should have started yesterday.”
“Matt wasn’t obese; he was healthy, young, very sporty and had no family history. The stereotypical sufferer is usually an older Asian male with a family history. He did not tick any lifestyle choice boxes that some people associate with cancer.
“No one is exempt, he was the last person that anyone would think would get such a devastating diagnosis.”
Professor Niall Tebbutt, the Director of Medical Oncology at the Olivia Newton-John Cancer Research and Wellness Centre describes linitis plastica as “a slow-growing cancer and because the symptoms are often vague or absent, most people are diagnosed at an advanced stage, one that’s likely to be incurable.”
After a round of chemotherapy and keyhole surgery one week after diagnosis, they discovered small cancer nodules were forming in Matt’s pelvis, the wall surrounding the stomach and the intestines.
Trine recalls the “utter shock” when they were presented with only two treatment options: eight cycles of chemotherapy and highly-invasive gastrectomy surgery followed by more chemotherapy, or straight to life-prolonging treatments.
Matt ended up going through the maximum dose of chemotherapy over eight cycles, putting on 15 kilograms through “pure determination” to have the strength for the surgery. While 95 per cent of the cancer nodules were removed and the tumour shrank, the couple knew the nightmare wasn't over.
An adverse reaction and low blood platelets stopped the post-surgery chemotherapy after just two weeks. Weighing 47 kilograms at 178 centimetres, Matt was hospitalised for five weeks, where another tumour was discovered in his oesophagus, the first to show on a scan since he was diagnosed.
The couple decided to move back to Australia to be closer to family and friends during treatment, only to be told the last of four chemotherapy drug options was not available locally. They had half a day to opt for palliative care over another high-risk surgery, giving them a chance to say good-bye.
“Matt was given two days to a week... he lasted six weeks, a medical miracle really,” says Trine.
“In that time he wrote letters, his will and our boys Daniel and Oliver cards up until their 21st birthdays.”
One of his goals was to make it home for Daniel’s fourth birthday, despite being a “shadow of himself”. Five days later, Matt passed away in the early hours of November 18, 2013. He was 40 years old.
“My boys are now eight and 11 and I have done all the things you do as a parent... my sadness is deeply intertwined with the sadness I have for Matt and the things he has missed out on,” says Trine.
“I miss his humour and positivity, he always wanted to be a dad, and was a great one.”
The GI Cancer Institute works to raise funds and awareness of GI cancer and clinical trials, and through its AGITG members it develops clinical trials for gastro-intestinal cancer patients. For more information: www.gicancer.org.au
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Nicole Economos is an online producer for The Sydney Morning Herald and The Age.