Metastatic Breast Cancer Advocacy and Me
There is a Greek proverb that says, "Society grows great when old men plant trees whose shade they will never sit in." This beautifully illustrates my feelings toward metastatic breast cancer (MBC) advocacy, both for myself and others, of the past, present, and future. It may be a scary world to navigate, but with others by my side, the road of MBC doesn't always seem so treacherous.
MBC Awareness Day
In 2020, I am fully aware of the rewards I enjoy thanks to the laborious efforts of MBC patients who came before me. For a sick person to take their own precious reserves of time and energy and expend them upon a community - a society - to enjoy years after their own life speaks volumes as to the character of the MBC community. For instance, did you know that during Breast Cancer Awareness month, annually in October, metastatic breast cancer was almost completely ignored? According to the Metastatic Breast Cancer Network, "Nine determined metastatic breast cancer patients, all members of the Metastatic Breast Cancer Network, traveled to Washington, D.C. in the summer of 2009 to change that reality. The 9 patients, with friends and family, lobbied Senators and House members to designate one day in October (October 13) as National Metastatic Breast Cancer Awareness Day. Back home, many, many metastatic patients called their Senators and Representatives to ask them to support the requested resolutions."
The patients learned that Congress passed a unanimous resolution which declared October 13th as MBC Awareness Day. That was ten years before my own stage 4 diagnosis, which makes me contemplate my own contributions to the MBC community and what, if any, impact they will have on patients of the present and future.
Proudly taking care of each other in the present
It is comparable to teachers sharing power points, or writers editing the work of their colleagues. In our respective disciplines, our professions, we often work together for the greater good. For the sake of producing the best result. In the MBC community, we, too, have managed to eke out a profession of sorts. Didn't you know that living with MBC is a full-time job? When I was newly-diagnosed and drowning in medical debt, those in the cancer community pitched in to buy my children Christmas gifts that year, one of whom was living with MBC. Her gesture - his favorite LEGO set - demonstrates this exact point; we look out for one another and are proud to do so.
One year later, I have been able to open a small candle-making business (EmpressTheodoras) that promotes MBC Awareness, with a portion of all proceeds funding a monthly gift package to an MBC patient. While this gesture may be long-forgotten ten years from now, it doesn't really matter. In the here and now, there are droves of MBC patients who spend long days at the hospital, are exhausted, and recovering from treatment. If they can come home to a package waiting for them, which makes them smile and feel better, it's all worth it. Just like how my son opening his LEGO on Christmas morning was all worth it. Sometimes, all we have is now anyway.
Impacting MBC in the future
After years of silence, of being ignored, MBC patients far and wide have joined together over the years to make a lot of noise in the field of advocacy. In addition to writing for advancedbreastcancer.net, I also write my blog, "WIGS AND THINGS", and created an MBC awareness photography project entitled, "Every 74 Seconds", on YouTube. My candles or packages may not be around years from now, but I know that my words and project will be. Perhaps someone newly-diagnosed will find some sort of comradery, or comfort, as I have so often found amongst other amazing MBC advocates and writers leaving their own impact. There is enormous joy, understanding, and humor to be found in so many blogs, pieces in Wildfire Magazine, and right here on advancedbreastcancer.net! Others follow the lead of past politically-minded MBC patients and lobby their governments for change. Very social MBC patients often can be found creating online support groups, organizing charity fundraisers, or educating social media about their personal, private experience of living with MBC. All of us have something we are good at equally as much as the desire to bring that good into the metastatic breast cancer community.
The power of the MBC community
With others besides us, MBC is a lot less scary. And when you walk beside someone, you are equals. You help them, and they help you. The MBC patients who went to Congress. The woman with MBC who bought my son a LEGO set when I couldn't afford it myself. Even me, sending packages to those with MBC of items I will never use. None of us had or have to do any of these things. That could like a lot of things. A 2 am instant message. A video chat. Even a LEGO set! Once you realize how welcomed you are, how great and powerful this community really is, why would one ever want to walk this dark road without it? We may only leave an impact now, or leave a lasting one to be enjoyed by patients of the future. Either way, we are supporting each other. Advocating for each other as well as those who will be here after us.
Caregivers: Do you practice self-care?