Melanie Swan wanted to live. So fervently. She wanted to live for her daughters. For her husband. For her family and friends. She wanted to live because, as she had shown throughout her 43 years, she had so much to give. She wasn't ready to give up. Not ever.
Melanie, a mother of two from Campbell, was one of more than 3000 women who die from breast cancer in Australia each year. Women with breast cancer have a 90 per cent chance of surviving five years from diagnosis.
![Melanie Swan on her wedding day in 2014 amid her treatment for breast cancer.](/web/20161114175819im_/http://www.canberratimes.com.au/content/dam/images/g/s/5/v/u/v/image.related.articleLeadwide.620x349.gs5ryf.png/1478861533580.jpg)
Melanie was one of those women. She was diagnosed in 2011 and died in 2016. She got her five years.
However, she was also among the roughly one in three breast cancer "survivors" who go on to develop the secondary stage of the disease known as metastatic breast cancer. Too often, terminal cancer.
![Melanie Swan's husband Scott Chamberlain and their daughters, Emma, 8, and Sophie 6, and her parents Coral and David Swan.](/web/20161114175819im_/http://www.canberratimes.com.au/content/dam/images/g/s/5/v/6/i/image.related.articleLeadwide.620x349.gs5ryf.png/1478861533580.jpg)
But Melanie wasn't interested in statistics. Except in defying the odds. Even when she was diagnosed in mid-2014 with metastatic breast cancer, she was still determined to live.
"She didn't take it lying down," her husband Scott Chamberlain says. "She did enormous amount of research. She tried to find out everything she could about how to beat this disease." .
But, at times, she felt very alone in her battle. Melanie's parents, David and Coral Swan, and Scott say, once her breast cancer spread to her bones, the medical profession, by and large, treated her prognosis as inevitable. Breast cancer – cancer – would kill her. She should focus on treatment that would allow her to live comfortably until then. Do the things she wanted to do until she died.
"One of the nurses told her: 'Go and get yourself a nice kitchen and enjoy your last days,'"Scott says. "F**k that," Scott says, raw with emotion in the days after his wife's funeral.
![Professor Sudha Rao's is researching ways to ensure breast cancer is treated earlier.](/web/20161114175819im_/http://www.canberratimes.com.au/content/dam/images/g/s/l/k/v/5/image.related.articleLeadwide.620x349.gs5ryf.png/1478861533580.jpg)
(Having said that, the family does say the nurses who cared for Melanie generally were "angels".)
There was also a feeling that the women who had terminal breast cancer were forgotten, that the messages about breast cancer were about the importance of early detection and the euphoria of the survival stories.
![Scott Chamberlain at home in Campbell with his daughters Emma, 8, and Sophie, 6.](/web/20161114175819im_/http://www.canberratimes.com.au/content/dam/images/g/s/5/v/7/s/image.related.articleLeadwide.620x349.gs5ryf.png/1478861533580.jpg)
"She discovered to her disgust, and it's actually the first time I saw her really angry and swear, how little money raised went into caring for those women with metastatic cancer," Scott says.
(The National Breast Cancer Foundation, for its part, says 20 per cent of the 111 research projects it funds are "directly investigating ways to prevent and treat metastatic breast cancer". "Funding research for metastatic breast cancer is a priority for the National Breast Cancer Foundation and contributes to our goal of working towards zero deaths from breast cancer by 2030.")
Melanie died on October 1. Life goes on, on the surface. But her family and friends remained rocked by her loss.
She was skilled in interior design, which she had studied at RMIT. She was picked as a future leader by her then employer, Australia Post. She worked in her later years in communications for Chamberlains Law Firm, where Scott is the chairman.
But more than anything, she was a loving wife to Scott and an adored mother to her daughters, Emma, 8, and Sophie, 6.
"She just wanted to live for her girls and see her girls grow up," Scott says.
David Swan says his daughter appeared to be the last person likely to get cancer, so careful was she about diet, exercise and living healthily.
"For us, it was the biggest shock of our lives," he say. "The only thing she had going against her was she was female." .
delivered a powerful and beautiful eulogy at his wife's funeral at the Holy Trinity Catholic Church in Curtin. It very much emphasised that Melanie was never defined by her disease. She wanted life to go on as normally as possible for the family. So the playdates and the holidays and the treasured little moments of day-to-day life continued.
She didn't have a bucket list. She just wanted more time with those she loved.
"Mel's love kept our little family grounded," Scott said in the eulogy. "Though gentle, it was always with you. And it never tired."
Few people even knew Melanie was ill. She continued to live her life with a quiet grace. But that took effort. An enormous effort. "It didn't define her and she lived life to the full, as well as she could. Without complaint. To me, it was heroic," Scott says.
In the way that often happens in Canberra, Melanie knew someone who knew someone, and she was introduced to Professor Sudha Rao about 18 months ago. It was here she finally found some hope.
Based at the University of Canberra, Rao is investigating how to stop the spread of recurring cancer, including breast, pancreatic and ovarian cancer, and is on the verge of conducting clinical trials. Melanie was instrumental in raising awareness and funds for Rao's work.
Despite all the challenges she was facing, the incredible mother raised more than $50,000 for the university's Cancer Research Fund, including through a movie night.
The money allowed Rao to fast-track her research by more than six months and develop non-invasive tests to detect cancer stem cells in the blood.
Melanie wanted to help herself but also any women who came after her. As she told The Canberra Times plainly in October last year: "If you've got an incurable disease like I do, when you meet a scientist who might have an effective treatment, you sort of don't walk away from a conversation like that and do nothing."
Rao focuses on how to employ blood tests and understand liquid biopsies better in collaboration with Canberra hospital oncologists. It's a move towards more personalised medicine and another potentially critical piece of the armoury in the treatment of breast cancer.
Her approach is significant because breast cancer is an insidious disease that can manifest itself differently in each patient.
Tailoring the drug response in each patient potentially ups the chances of successful treatment before the cancer spreads to other parts of the body. It's also about giving treatment as soon as possible.
"With the availability of cutting-edge technologies, development of sensitive, non-invasive blood tests together with standard measurements such as CT scans, this could be crucial for early intervention," Rao says.
"The early intervention happens by developing blood tests where you can monitor these cancer stem cells in the blood, well before the metastasis, the spread, has happened.
"What we can also do, once we've isolated those cancer stem cells, we can develop these companion drug essays. We are hoping to be able to say which combination of drugs is likely to benefit the patient. It's very much to give the oncologists some guided, pre-clinical information.
"Whether that patient will definitely benefit or not, we're still learning. It's more the fact the oncologist has a guide."
The cancer had spread to Melanie's bones by mid-2014, and to her liver by April this year. She didn't have her first infusion of immunotherapy, as recommended through Rao's work, until August this year and again in September.
Results, at the time, showed that, while there was no impact on existing tumours, there was no new growth.
Melanie was hospitalised on September 27 and died four days later.
Scott has no doubt Rao's work could have helped his wife if it had been applied earlier in her cancer treatment.
"It gave her hope when there was no hope. It was just a bit too late," he says.
Rao says she hopes the research blood tests she has been developing with the oncologists become standard diagnostic tools after undergoing further validation studies in future. It's early days but a step in the right direction, she believes.
"This is why we're trying to push the government for funding to set these up as standard services," she says.
"We're not saying they're the be all and end all but they are companion tools for oncologists because, otherwise, the patients are having to wait, the oncologists are working in the dark.
"Melanie was instrumental in helping me get people on board, but we've still got a long way to go."
In death, Melanie Swan continues to give. She asked that donations be given in her memory to the research fund, including by mourners at her funeral.
As a result of that gesture, the money now raised by Melanie and her supporters towards Rao's research has risen to $70,000.
The university will also establish the Melanie Swan cancer research fellowship to provide financial support to early-career researchers working in the area of metastatic cancer. It's a fitting tribute, say those who knew and loved her.
"She was an amazing woman," Rao says.