Breast Cancer Network Australia turns 20: The mums who gave patients a voice
THEY met as teenagers at teachers college. Decades later, they changed the face of breast cancer treatment in Australia, smashing taboos and giving patients hope.
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SEVEN women meet in the 1970s as teenagers at teachers college.
The call themselves “The Boilers”.
Two decades later when Lyn Swinburne founded the Breast Cancer Network of Australia these friends supported her as she turned it into the most successful patient support groups in the country, one that turned breast cancer from a disease you kept secret to one that now attracts massive public attention.
Breast Cancer Network Australia, which celebrates its 20th birthday this year, now has 130,000 members.
It gives women with breast cancer a voice at government decision making tables, has successfully campaigned to get expensive new treatments like Herceptin funding and helped all Australians with terminal diseases get easier early access to their superannuation.
Its most important role has been to support and educate women on their cancer odyssey and give them a forum to ask questions, receive advice and get companionship.
Lyn Swinburne founded the network in 1998 after both she and another of Geelong’s ‘Old Boilers’ Karen Albrecht contracted cancer in the early 1990s.
Both had found their treatment a struggle that ignored the woman and instead focused on the tumour and they wanted to do something to change that.
They formed an action group with another cancer patient Marcia O’Keefe, an engineer who was annoyed she had been treated like a dummy by the medical system during her treatment.
“I wanted to change the culture, give people permission to talk about it,” says Lyn.
“When I was diagnosed people were coming out of the woodwork saying I was diagnosed 10 years ago and had a double mastectomy and no-one knew, because 25 years ago it wasn’t spoken of,” she said.
Marcia became sicker and unfortunately Karen passed away in 1996 but Lyn won seed funding from the National Breast Cancer Centre for a newsletter called The Beacon.
“That’s how it started in a very grassroots way with women writing their stories and about issues that affected them and often it wasn’t the issues that scientists and medicos were focusing on,” she said.
Lyn visited breast cancer sufferers in each state and territory, held meetings in town halls and in 1998 she held the first breast cancer conference in Canberra that laid out an agenda and action plan.
To gain attention and raise money at the conference she organised to display a Field of Women outside Parliament House in Canberra.
It consisted of 10,000 pink silhouettes to represent the women who would be diagnosed with breast cancer that year and 2,500 white silhouettes to represent the women who would die from the cancer.
Friends and relatives of breast cancer patients paid to attach a message to one of the silhouettes, the event raised $60,000, attracted huge publicity and gave breast cancer a political profile.
The money raised allowed Lyn to hire a staff member and then Roger and Leslie Gillespie, the founders of Baker’s Delight, donated office space and equipment to the network.
Along the way the Old Boilers have chipped and today some of them still volunteer and work for the network.
As a group they have also provided support for Jessica Albrecht the daughter of Karen who was just six when her mother died from the disease.
“They’ve watched over me, been there for birthdays and one of them has been my surrogate mother since I was ten, taken me in like I’m one of her daughters, supported me through university degrees, buying a house and a formal dress,” she said.
Sylvia Rethus, age 62 is nearing the end of her battle with breast cancer.
Diagnosed the year BCNA was set up she says living with the disease was made easier by its newsletter The Beacon because it provided advice and inspiration.
After she was diagnosed with cancer she became a marathon runner, joined a choir, retrained to use an office computer and travelled extensively.
She lived to see her daughter obtain a medical degree and have two children and her son marry.
Sylvia’s cancer returned in 2013 and she is currently refusing further treatment and has just months to live.
First her mission was to be around to see her first grandchild born. “Then I got greedy and wanted to see her first birthday and second and then I had a second granddaughter,” she says.
“The Beacon told you about potential new treatments, how it’s now more like a chronic illness and not a death sentence and that has given me the incentive to ray and stay proactive and ask questions, be inquisitive and proactive,” she says.
Originally published as Breast Cancer Network Australia turns 20: The mums who gave patients a voice