Deanna Attai, Carmen Gonzalez and I attended her memorial service and despite the tears, it was as beautiful and energetic as Donna was. And as Deanna expresses so elegantly … all of the words used to describe her, spoken by her family, her students, her friends, and her colleagues . . . they are exactly the way we knew her as well. For me, this community is as real as it gets, and I am as grateful for the support, as I am for the opportunity to give back.
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Breast Cancer Social Media – #BCSM – is community that has naturally and generously come to embody that we each give what we can when we can, and where there is no shame or stigma in taking what we need, when we need. I have received so much that it is hard to imagine I haven’t tipped the scales in favor of taking, but the honor of giving matters just as much.
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I can vaguely remember my first #BCSM Twitter Chat, though I neither recall how I stumbled upon it, nor the topic of conversation. But I do know this: it was WAY over my head, and that’s when we were younger and smaller!
I remember not quite knowing my place – not knowing if it was OK to jump right in, or if I was supposed to hang back and just “listen.” I remember wondering if there were “authorities” or a hierarchy; feeling like the new girl who sat down in the cafeteria, ending up at a table with the cheerleaders.
Within a week or two, I felt a bit silly about all the worry. In fairly short order, I was quite at home and scheduling my life around the Twitter Chat hour. Before I knew it, #BCSM was there for me in ways I’d have never dreamed I could find in a “virtual” community.
#BBCSM was there when I was finding my way on my blog.
#BCSM was there when headlines and studies came up that I didn’t quite understand.
#BCSM was there when I rode the waves of scanxiety.
#BCSM was there when I went to conferences.
#BCSM was there when my tumor marker was rising, and rising.
#BCSM was there when the biopsy came back.
#BCSM was there when I became a Stage IV patient.
#BCSM was there when the marker started dropping.
#BCSM will be there for whatever comes next . . .
It was once just yesterday, and lifetime ago….
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Anyone living with, or supporting, someone with cancer, or any serious illness knows it is a roller coaster ride – dips and turns and the occasional drops that cause your stomach to lurch; sometimes you even end up upside down. Anxiety ebbs and flows, and sometimes those closest to us are either too busy or too afraid to understand, especially when it comes to metastatic disease. But #BCSM is always there.
I’ve written on my own blog about #FearlessFriends—the hashtag that we use, thanks to Rachael Cheetham Moro, when we want to affirm that we are there no matter what, prepared to set aside our own fears and anxiety to embrace another in need.
I have learned much from my #FearlessFriends on #BCSM. The have shed light on my darkness. The have held me close when I’ve felt alone and held me up when I have stumbled. The have been able to hear my fears and sit still when I cry. They have been listeners when I have needed to be heard, teachers when I’ve needed to learn, and advisors when I’ve needed guidance.
I have discovered an incredible community of survivors of metastatic breast cancer on #BCSM, women who have become my role models and my heroes as I’ve found my way on this path. I have found women who understand the pain of being shunned by early-stage breast cancer survivors; women who have helped me question what is and shared my frustration over what isn’t yet.
All in all, it is the passion, the commitment and diversity of this community that draws us in, holds us fast and gives us promise. We pull no punches and take no prisoners. We embody fierce passion, indignant outrage, and bottomless support. Together we have found it’s voice – a voice that rings out loud and clear, where science and compassion meet, where rigorous scrutiny of breast cancer headlines stands right next to loving support. And we welcome all…if you’re not yet a part of us, please, please join us! See you on Monday night…