Friday, 18 October 2013

I was deeply saddened a few days ago to hear from the mother of a young woman with advanced breast cancer that her daughter had died, after living with the disease for several years. Her daughter was only in her 30s and leaves three small children.

Also sad were the instructions her daughter left for her funeral. Anyone attending was forbidden to wear any pink. This was her last message to all of us and this month, breast cancer awareness month, I promised her mother to make it count.

Both mother and daughter had spoken to me about living with advanced breast cancer, where the cancer has spread to other organs, typically bones, lungs, brain or liver. This is what eventually causes death. It is difficult enough living with the disease, they said, but what they couldn't tolerate was the experience of being rendered invisible and inaudible.

Many women with metastatic disease feel that globally, pink politics and marketing over-emphasise survivorship, that special club to which so many now belong but from which they are excluded. They say their experience is just too scary to be acknowledged and does not fit within the ideology of hope that has been honed to perfection since the breast cancer movement began. And theirs are not the bright shiny stories the media likes to tell.

Just as women with early breast cancer once banded together to draw attention to their needs, women with metastatic disease have started to do the same. It's become a pink splinter movement and one of its leaders and advocates is Musa Mayer.

Her book Advanced Breast Cancer emphasises: "Breast cancer strikes such terror into the hearts of women that they turn instinctively towards those who are deemed cured". On the one hand, women with advanced disease often silence and hide themselves so that they do not depress the newly diagnosed. They feel they are somehow failures. On the other, those who have secured entry into the survivor club often feel a dreadful guilt in the face of those others who will not make it.

Research has brought us to a place where in Australia today we have five-year breast cancer survival rates of 89 per cent. A study published in the Medical Journal of Australia last year tells us that one in 20 women with disease confined to the breast, and one in six women whose breast cancer has reached adjacent soft tissue or lymph nodes at diagnosis, will eventually progress to metastatic disease. Research has delivered the medical regimes for many of these women to live for years. It has not yet got us to a place where they will not die, but that is the next horizon.

Women who confront us with the riddle that you can be living with and dying of breast cancer at the same time are a presence in our lives. As a society, we are largely not ready for this and that needs to change.

Pink is all about women supporting and advocating for each other. It makes me sad to hear that today, some women living with metastatic disease feel excluded by it.

We need to find a more inclusive form of language, one that is not all about ''battling'' and ''winning''. We need a new ideology embracing those who will survive and those who will endure for as long as possible. Every day, these women must walk the thin edge between living in the moment and living with illness, between striving to be well and striving to accept their time remains limited, while research continues the search for answers. Let's not make their task any harder because our fear of dying gets in the way. That's the pink elephant in the room.

Surely this October - 28 years after the breast cancer awareness month was established internationally - we can acknowledge that pink can have many shades, some lighter, some darker, but all the same colour. And that not all Pink Ribbon stories will have a happy ending, but they all deserve to be told.

Carole Renouf is CEO of National Breast Cancer Foundation. 

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Kym Robins
National Breast Cancer Foundation
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