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Expected to die decades ago, Kate Vines is still living with cancer over 26 years later

An oncologist at the Royal North Shore Hospital told Kate Vines she should ensure her affairs were in order as her life was coming to an end. She was suffering from medullary thyroid cancer.

Auckland-born Vines was 33 years old, living in Sydney with her husband and their five-year-old son. She had been diagnosed 18 months earlier and had her thyroid removed, but the surgeon found the cancer had already metastasised into her lymph nodes and spread into her chest. Six weeks later, she had a thoracotomy – her breast bone was cut in half – and the doctors again sliced away as many of the tumours as they could find, but they knew there were others, unreachable and undiscovered, that would kill her.

Vines’ GP, the first person she had consulted, had never seen a patient with medullary thyroid cancer. In fact, he had never heard of the condition. He did not believe she could be cured.

“Basically, I was left with pretty much no treatment options whatsoever,” says Vines.

Twenty-six years after she was first diagnosed, Vines is sitting at an outdoor table at Georges Mediterranean Bar and Grill on a warm afternoon in Darling Harbour, smiling and chatting and acting considerably more alive than I generally feel before lunch.

But she still has cancer.

“I’ve never been in remission,” she says. “I’ve always had evidence of cancer. Once it’s metastasised, the molecular structure of the cancer changes, and that makes it much more difficult to treat. I have a lot of ‘secondaries’ in my bones. I have miliary disease in my lungs, which is a whole lot of tiny little tumours. I do have a couple in my liver. I’ve got one lesion in my brain, and a number of other soft-tissue tumours. It’s called ‘indolent’, it’s quite slow growing, and the doctors say that at some point it will take off again. Every now and then it raises its little hand and I have a little spurt and I have to look at treatment options. But it’s almost like my body’s learned to live with it.”

Today, Vines is the head of patient care at Rare Cancers Australia, a charity she founded after more than two decades of surviving her sickness. She describes herself back then as “a young, fairly fit, I thought fairly healthy mum, who had a great life and everything at my feet”. Her son, Paul, was her “absolute pride and joy”, and almost a miracle as Vines had suffered from endometriosis and been told she probably could not have children. Her then-husband, Ray, was her best friend. They worked together in a panel-beaters’ supply business, and travelled the world.

Vines’ diagnosis changed everything but, she says, Ray constantly reinforced to her that she had to be there for Paul’s 21st birthday – and that long-term goal perhaps helped to keep her alive. However, she was becoming sicker and sicker. She tried alternative therapies at the Gerson Clinic in Mexico – with lots of carrot juice, a vegan diet and coffee enemas – but says she would never recommend that to anyone. “I turned bright orange from all the carotene and I lost about 15 kilos in weight and I was so sick that I couldn’t get out of bed,” she says.

Next, she went to the Gawler Cancer Foundation in Victoria, which promotes a “holistic” approach to wellbeing, stressing diet, meditation and positive life changes. She says Gawler was really helpful but, “during this time, my marriage broke up. With all the pressure I was under with my health, I felt that I would do better if I was on my own with Paul. So Ray moved out.”

She lived with her son for a year, but when he was about eight years old she felt she was not coping with being a single mother while also having multiple surgeries to remove cancerous lymph nodes from her neck. So she asked Ray if he would take Paul, which he did.

“That was the most difficult decision I’ve had to make,” she says. “It was absolutely devastating. But I felt it was better for him to have a part-time mother than no mother at all. I knew that if I had time just for me, I could do the meditations and all the things that I thought were necessary for me to get well.”

Eventually, she left the city for a 25-acre farm in Kangaroo Valley, where she felt healthier than she had for years. She moved to Melbourne, where she was under the care of a Victorian oncologist who suggested cytotoxic chemotherapy for the secondary cancers in her bones.

She had been experiencing severe chest pains, but they disappeared with the first round of chemo – which was, she says, “quite an amazing thing; they didn’t expect it”. However, after three further rounds she’d lost all her hair and lots of weight, and was sick again. She said no more.

In Melbourne, she met her husband, Richard, who had worked for several non-profit organisations, and her oncologist suggested she and Richard should set up an organisation to advocate for rare-cancer patients. Although 42,000 Australians are diagnosed with a rare cancer every year, their conditions are difficult to research. Many rare cancers are very aggressive, so there are rarely large patient populations to study and it can be impossible to set up full-scale clinical trials for potentially helpful drugs.

Since drugs cannot be approved by the Pharmaceutical Benefits Scheme without the necessary trials, there are few treatments for rare cancers available under the PBS. Therefore, rare-cancer patients might need to spend $10,000 a month on a new immunotherapy, for example, and be forced to sell their homes to stay alive.

Luckier patients might benefit from compassionate-access programs from pharmaceutical companies, but drugs manufacturers are not allowed to advertise these programs.

“It’s just a really unfair thing that if you happen to be unlucky enough to be diagnosed with a rare cancer, you’re almost penalised,” says Vines. “There are treatments out there that aren’t listed.”

She and Richard moved to Bowral and set up Rare Cancers Australia in June 2012. They have set up a crowd-funding platform on their website, a patient-treatment fund with an individual page for each patient, and they have raised almost $2 million and helped more than 50 patients since October 2014. Vines deals with patients every day, matching them with clinicians who know about particular rare cancers.

The charity helps them find cancer centres and clinical trials, and offers one-on-one support. Vines remembers how frightened and alone she felt when she was told to put her affairs in order, and says other rare-cancer patients are given the same advice every day.

So what does all this mean for our lunch? Well, since her diagnosis, Vines has been a vegan then a vegetarian, then she allowed herself to eat fish, now she eats “everything”.

At Georges, I order the satisfying mezze plate – which is literally everything – and Vines chooses the barramundi special – she judges it “beautiful, wonderful”. After some hesitation, she opts for vegetables over chips on the side, but she stresses that she does eat chips and she enjoys the occasional glass of wine.

After all, when you think about it, life’s too short.

Henry Sapiecha

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