2017 Hope and Grace Grant Fund Recipient: Bay Area Young Survivors

May 9, 2017

It’s May, which means it’s time to introduce you to this year’s Hope & Grace Initiative Grant Recipients! This illustrative list of community leaders and initiatives are making great strides in the field of mental health, shining a light and improving lives every single day. We’re proud to assist them in their goals, and to that end are proud to announce that this round of grant recipients brings us to over 3 million dollars granted in just three short years. It’s our honor to help these initiatives pave the way to a brighter future for mental health.

We’d like to introduce you to our grant recipients, starting with today’s feature on Bay Area Young Survivors, a program born and based in San Francisco, CA. Meaghan Calcari Campbell, President of the program, took some time to tell everyone a bit more about this amazing program:

 

“Bay Area Young Survivors (“BAYS,” for short,) was started in 2003 with a primary goal to provide support to young Bay Area women living with breast cancer. We provide access to support and information through monthly in-person meetings, online support, and community-based events. We’re an all-volunteer organization, and we work hard to provide the information and support to ensure our members thrive with this diagnosis.

Our cofounders, Deb and Angela, met sitting across from each other in an infusion center. They’d been attending hospital support groups and felt isolated among the other attendees — women who were significantly older, retired, and more in the sunset of their lives. By contrast, Angela had an infant and was at the peak of her law career. Deb and Angela both felt very alone with their diagnoses as a result, realizing the groups didn’t address issues specific to younger women. They started calling other women and got the word out to hospitals and medical professionals that a young women’s support group was starting. The initial meetings were held in their living room. Eventually, BAYS outgrew that space, and today we have over 500 members. We want women who are diagnosed with breast cancer to find us, but we’re unique in that inevitably we don’t want new members: we hope someday no more women will be diagnosed with breast cancer.

We’re so proud of all aspects of our psycho-social support, especially our online community, which is how most women participate in our program since many aren’t physically able to get to an in-person event. We discuss many things via this forum in a safe, non-judgmental way that’s respectful of people’s choices and the diversity they bring with them.

We’re also incredibly proud of our monthly support groups, a place where women can gain support, ask questions, or just sit quietly and feel supported. We offer free childcare and food in these support groups. Oftentimes, it might be the only two hours a week that woman has all to herself or where she receives an extra set of hands to help with her children.

We’re very excited to receive a grant from hope & grace fund, and we’re applying it directly to these in-person support groups. Because we’re all volunteer, we have developed some criteria for what makes a great facilitator: we want women in a mental state where she can provide support to others, she has some light facilitation in her background, etc. Based on member feedback, we’ve been developing a training program for facilitators to ensure consistency of our support group experience. With the grant money, we’ll be able to fine-tune and deliver a training program to all our facilitators and then monitor its impact.

I’m a breast cancer survivor myself; I was diagnosed at 32, so I can speak personally about the mental impact of the disease. Getting a life-threatening diagnosis in your 20s, 30s, and 40s, a time in your life where you’re technically not “supposed to” think about death, is traumatic. Suddenly, the questions start: will I live through all the medical procedures, how will I take care of my family if I can’t work, do I tell my children I might die, what will my spouse/partner do if I pass away, and/or how will we handle income and childcare while I’m being treated?  That amount of stress alone is a lot on a patient, let alone navigating the physical and emotional impact of the treatments.

The mental health impact continues as you progress or move into survivorship, which means the disease is in remission and/or there’s no evidence perceived. You can start to worry about the disease returning and what that might be like, and there are also long-term physical side effects. For example, because of receiving both chemo and radiation, I now have annual blood work to monitor my lymphatic system since certain blood cancers and lymphoma can result from some chemotherapy agents. Just this year, as I was walking back into that room to go into the MRI tube, I experienced the significant amount of PTSD that any of us can experience, complete with plenty of flashbacks and memories of both physical and emotional pain.

Also, there’s a whole other suite of mental health issues for women diagnosed with metastatic disease, which means they’ll likely die of their breast cancer. That’s a huge deal, and it comes with its own set of emotional issues. They’re on different chemotherapies and will continue to switch treatments as they continue the fight, so it’s a constant flow of stress and uncertainty of how long they’re going to live and what their quality of life is going to be, not to mention the same questions about those who will survive them.

I say all of this to bring attention to the fact that you might not think there’s a mental health component to breast cancer, but believe me when I say there absolutely is. The Pink Ribbon culture can be very “Ra-Ra! You beat breast cancer! You survived it! You beat it!” However, that amazing passion can come with tremendous pressure to put the experience behind you, for survivors to not talk about lingering side effects that can negatively impact their quality of life. It’s why BAYS works so hard to provide such a wide range of support; we want to ensure we’re best equipped to provide the psycho-social and emotional support for women both during treatment and afterward.

We cherish our members and their ability to share their stories to help others. Five years ago, our former president, Erin Hyman, recognized the impact of these first-hand, breast cancer tales. They make you laugh, they make you cry; they’re really about the human spirit and perseverance. Erin was a writer herself, and realized one day we really needed to write all these stories down to be captured for the women’s families and those going through similar situations. She wanted to capture the reality of breast cancer that was a bit grittier, the triumph along with the dark humor and some of the very scary, negative things that accompany the journey. She gathered and edited a collection of stories written by a subset of BAYS members, which became our first, self-published book: The Day My Nipple Fell Off and Other Stories of Survival, Solidarity and Sass: A BAYS Anthology. Erin unfortunately died of metastatic breast cancer the year after the book was published, so in her honor we continued the tradition by self-publishing two more anthologies, Shivering In A Paper Gown: Breast Cancer and Its Aftermath: An Anthology, and Agony and Absurdity: Adventures in Cancerland: An Anthology. The books are a beautiful tribute to our members and their stories, particularly those who’ve passed away from the disease. Their stories can be shared with their children and preserved for members who are living. It’s also been a transformative experience for women whose stories are included to say they were published, that through this crappy thing that happened they we able to tell their story to touch someone else dealing with this disease. We’re so proud of how our members found healing through writing and moral support. The books are available on Amazon, and all proceeds go to BAYS.

We’ve love for you to find out more about us. Please feel free to visit our website or our Facebook page; you can send us messages that way. We hope to support and inform the women who need our help until someday breast cancer and all of its negative aspects will be a thing of the past.”