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While my blog posts are usually informed by my experiences, I don’t write about my personal life or my family. This post is an exception.

On October 6th my cousin Amanda Rynne wrote this on the National Breast Cancer Foundation’s Facebook page:

October is so hard. Even harder this year as I am, at 41, just 31 months after my ‘caught early’ diagnosis receiving palliative care. I read these posts and all I can do is cry – all this talk of fighting and winning and beating cancer. I’ve fought bloody hard – do people realize this is an unwinnable fight for anyone diagnosed with advanced disease? Do they realize this imagery and wording implies those who die weren’t up to the fight? That we are losers and failures? When will we focus on this as a hideous and fatal disease it is that still kills 7 Australians everyday instead of prettying it up with a pink ribbon?

I have cared for many patients with cancer, and from the beginning thought the metaphors of battle carry hidden messages of disempowerment – an admonition that people with cancer have an obligation to fight, whatever the cost, that succumbing to the disease means they didn’t fight hard enough, and that deciding to discontinue treatment means defeat.

It’s almost impossible for anyone to appreciate what the lived experience of cancer treatment is like – my knowledge is all close but secondhand, and though my role as a nurse has meant patients have confided in me things they protected their families from, I know I have only a dim and two-dimensional understanding of the technicolour impact. I know enough to know what I cannot know.

This is not confined to cancer – chronic diseases like end-stage renal failure have similar, though usually longer, trajectories; for most people the time comes when the burden of treatment (and associated accommodations, like dietary modification) is either too great, or futile. But they rarely face the emotional injunction to fight, battle, survive.

The pink message is pervasively associated with breast cancer, along with the notion of awareness.

Fuck awareness

Here’s some information you should be aware of:
– there are at least eight different kinds of breast cancer, and we’re only at the beginning of having an understanding of what interventions are most effective for each
– cancer is staged, depending on how invasive it is; the most advanced is stage IV
– with very few exceptions, people diagnosed at stage IV die from the disease
. Australia only started collecting information about women who were diagnosed with stage IV breast cancer in December 2011
– that means we don’t even know how long these women live
– we don’t even have information to compare the outcomes of different kinds of treatment
– women with stage IV breast cancer are almost invisible: they don’t appear in the literature, and have even been asked to leave support groups because ‘newly diagnosed women don’t need to hear about it’
– while the majority of people diagnosed with breast cancer are women, men are also susceptible, and are as invisible and excluded because of the ‘pink washing’ of breast cancer

Amanda died on October 10th. The size of her funeral attendance is eloquent testimony of the impact she had, and this was complemented by the vibrant, loving and positive speeches from significant people in her life, from her brother, and her friends, to her husband – who delivered his eulogy on the 21st anniversary of the day they met.

She planned every detail of her funeral, including a slide show, readings and music. And in addition to donations to the Breast Cancer Network Australia, Amanda had a final request, specified in her funeral notice:

Please wear bright colours, preferably red. It is Amanda’s express wish that the colour pink is not worn.

Amanda died before she saw the response from NBCF’s CEO, Carole Renouf, to her post. Of the many legacies this remarkable woman leaves, including three wonderful children, this may be the one with the widest reach.

Vale, Amanda Catherine Rynne – you are, and will continue to be, missed.