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 MBC 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 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 MBC. 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 treatments with miserable side effects.
In my memoir, I did not sugarcoat my experience as a daughter with a mother diagnosed with MBC (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 if we don’t talk more openly about dying and death?
How will we ever learn to give permission to ourselves (and to 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 MBC, supporting those dealing with metastatic disease and funding research specific to metastatic disease. Presently, that organization will be METAvivor. 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?
#MetsMonday #dontignorestageiv
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Ilene
Tuesday 1st of December 2020
Nancy I can only hope my poetry book to come sooner than later and my memoirs to come later than sooner helps as many as your books have. I admire your strength in speaking your truth no holds barred. I will likely use the blog as my starting point. I think it’s just naturally the right thing to do.
Nancy
Wednesday 2nd of December 2020
Ilene, Thank you for your kind words. I agree, your blog is likely a natural starting point. Thank you for commenting and for your ongoing support. And good luck with your books! I can't wait to read them!
Carol lorance
Monday 12th of September 2016
47 diagnosed with stage 2 breast cancer. 6 mths chemo, surgery, and radiation. Cancer free 7 yrs. did Not Understand MBS till July 2014 and doctors tell me opps, it's back, in your bones, we'll slow down the progression of the disease but it's not curable! Wow ! So I am on my fourth type of treatment. I've done 3 clinical studies this time and they last about 3-4 months at a pop. A year ago it also showed up on my skin, upper eperdermis.
Lying in bed at 57 years old with symptoms of nausea, clammy, sweating, and BP up when I came across you on Facebook. I'll have to find your book. Thankfully I gave my faith which gets me through this mess! Thanks for listening
Stacey
Friday 15th of January 2016
Hi Nancy, thank you for this, your advocacy, your book, your willingness to share so openly about the realities of breast cancer. I think, the reason I love this post so much is because we've waited so long for the chance to speak up about these things. It's been such a long road and finally, the time seems right. You are opening people's eyes to what's happening. Since coming back to blogging and really delving back into our community, I see a big change in the bloggers out there and to some extent, the media that writes about breast cancer. The attitude is changing. I'm seeing a lot more anger and determination. Good steps in the right direction and much of that stems from you! Thank you for not giving up the fight. I know the ladies in my life that I've lost, thank you, too. xoxo
Nancy
Friday 15th of January 2016
Stacey, I agree. There does seem to be more anger, more determination, a greater sense of urgency, or something. It's not like those things haven't always been there in the blogosphere and even before that, but the voices are becoming stronger and more united. And finally there seems to be movement, albeit still too slow. I think it comes down to the power of social media. So as much as we all complain about it sometimes, this is one case when I think it's had a big impact. So I don't take credit at all. But thank you for your kind words. And let me just say again how happy I am to have you back actively blogging. xo
Laine
Wednesday 13th of January 2016
Hi Nancy, I read your memoir over the holidays with great interest and commend you on your eloquence and candour. Well done! I first learned of metastatic breast cancer when I was 15 years old and my grandmother was dying of it. During the 14 years I was a family doctor, I had several patients in their 30's and 40's who were diagnosed and treated for various stages of breast cancer. A few decades later, all but one have died or are dying from metastatic breast cancer - and that one recently suffered a local recurrence. So after undergoing 8 courses of gruelling neoadjuvant chemotherapy for Triple Negative breast cancer only to discover on the surgical pathology of the mastectomy specimen that my tumour instead of being 2 cm was 6 cm and there appeared to be "minimal response" to chemo, I wept in my beloved medical oncologist's office. At the same time, I was so comforted by his kindness and honesty in saying, "You are right to be realistically fearful of and humbled by this aggressive cancer. After you complete your radiation treatment, try to pick up the pieces of your life the best you can and leave the worries of the "what-ifs" to me." Great advice, but as you so well know, difficult to follow. I was heartbroken on learning of Holley Kitchen's death yesterday. How timely your posting on MBC was and how educational you, Mandi, Ann, Beth and other bloggers are. Thank you all for your invaluable postings and for the time and energy you devote to them and in turn, to us, your readers. Elaine
Nancy
Thursday 14th of January 2016
Laine, Thank you so much for the feedback. I'm glad you thought my memoir to be a worthwhile read. I'm sorry about your grandmother. Such an experience certainly changes a person, doesn't it? And then to be diagnosed yourself... I'm sorry. And yes, sometimes the advice is next to impossible to follow and we all have to muddle through as best we can. We were all heartbroken to learn about Holley's death. The thing is, every death from mbc is heartbreaking for some family out there. We do need to do better. Thank you for sharing and for your kind, supportive words.
Kathi
Wednesday 13th of January 2016
Nancy, I look forward to reading the book very soon. I'm still reeling from all the recent deaths of friends in our cyber world. Anything we can contribute to awareness or to deepen the coffers of METAvivor or MBCN will help. I think we are all just so heartbroken these days, it helps to be able to channel some of it into some kind of action or advocacy. It's a long game, but it's better than feeling nothing but helpless rage. Much love to you. Kathi
Nancy
Thursday 14th of January 2016
Kathi, Many of us are still reeling and the worst part of it is we know the losses will keep coming. I agree, it helps to channel some of our grief, frustration and so on into some sort of action or advocacy - whatever this means to each of us. Read my book when you feel up to it. Much love back. xo