As I mentioned in my previous post, I have a bunch of goals for my memoir. One of my primary goals is to further expose metastatic breast cancer for what it is – horrible, deadly, under-discussed and massively underfunded. I share candidly about my family’s experience with metastatic breast cancer in my memoir, Cancer Was Not a Gift & It Didn’t Make Me a Better Person: A memoir about cancer as I know it, because too often metastatic disease is not talked about at all, and there is not nearly enough money dedicated to research specific to metastatic disease.
I hold major players like Komen (but there are many others and there is plenty of “blame” to go around) at least partly responsible for this “sin of omission.”
It’s inexcusable that the very segment of the breast cancer community such organizations should be working hardest to support, the metastatic community, has so often and for too long been pretty much left on the sidelines. This is unacceptable and is no longer being tolerated. More and more advocates are becoming more and more vocal, as they should.
Why did I choose to share candidly about my family’s experience with metastatic breast cancer?
Because I want readers who don’t know about metastatic disease to come away with some idea of how this disease impacts a family. Sharing equals advocacy. Advocacy will someday (soon I hope) equal MORE research specific to metastatic disease. Research will eventually equal less harsh treatments and extended life expectancy for those dealing with metastatic disease. And at the top of the wish list, of course, progress we achieve through research will hopefully some day ultimately halt or prevent metastasis altogether.
Women and men dealing with metastatic breast cancer deserve more years, not just more months that are too often filled with miserable side effects.
In my memoir, I did not sugarcoat my experience as a daughter with a mother diagnosed with metastatic breast cancer (or my own cancer experience, for that matter). In fact, I’m still a little nervous about the reaction some family members might have to all I shared. I could not share my cancer story without also sharing my mother’s. They are intricately intertwined for obvious and not so obvious reasons. I’m pretty confident my mother would have been totally fine with me telling it like it was. That’s the kind of person she was – very open to discussing her cancer.
Back to my goals…
In addition to sharing about my family’s reality with metastatic breast cancer, I also hope to start discussions about end of life issues.
Dying, death and grief are hard topics for sure, but this is exactly why we need to have such discussions.
How will there ever be death with dignity for everyone if we don’t talk more openly about dying and death?
How will we ever learn to give permission to ourselves (and others) to grieve in our own time and in our own ways if we don’t talk about it?
So again, writing my memoir was/is mostly about advocacy.
Finally, I will donate 10% of my book’s profits to organizations dedicated to educating the public about metastatic breast cancer, supporting those dealing with metastatic disease and funding research specific to metastatic disease. Presently, I am thinking about METAvivor and Metastatic Breast Cancer Network. I fully realize there won’t be truckloads of dollars coming from the sale of my little book, but small amounts add up too. And I intend to use whatever platforms I have.
What about you?
What will you do today (or any day) to help others better understand metastatic breast cancer and the need for more research specific to it?
When did you first learn what metastatic breast cancer is?
Pass it on!
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