Planting the Seeds of Advocacy
When I was a little girl, I loved a good story. It began when I sat on my parent’s lap and begged them to tell me the story of the Little Red Hen. From my perspective, the Little Red Hen realized she had to take the initiative to plant, tend and harvest wheat, then grind the wheat and bake it herself if she wanted to eat good bread. Every time she asked her barnyard friends for help, they replied, “Not I,” and she retorted, “I will.” The Red Hen took charge of the situation; didn’t shy away from hard work and she reaped the benefits.
Decades later, I still love a good story. Powerful, resilient women facing adversity with energy and passion who are taking charge of a challenge and determined to overcome odds are still my favorite. That’s probably why the Hear My Voice volunteer program holds such a special place in my heart. The program gives metastatic breast cancer patients the tools to speak for themselves. Through the 5 classes of advocates Living Beyond Breast Cancer has trained, documentaries have been released, books written, legislation impacted, support groups formed, and thousands of impressions on social media have resulted – all from the seeds planted in the advocacy program.
I’ve spent most of my career helping companies tell their brand story to influence sales. It wasn’t until I was diagnosed with metastatic breast cancer in 2016 that I appreciated the power of using my own story. It was in the 2018 Hear My Voice volunteer program that I established and articulated goals for using my voice to make a difference. When I left Philadelphia after the training, I felt empowered—like I regained some control over my fate.
When the staff at Living Beyond Breast Cancer asked me to consider being a mentor to the next class of Hear My Voice advocates, I was honored and humbled. I said “I will” before the waves of self-doubt could come crashing over me. In the days leading up to the conference, I studied the biographies and aspirations of the advocates that were invited into the 2019 program. Each advocate was unique and enthusiastic to begin their work, and I was excited to hear their stories firsthand and learn what they wanted to accomplish.
Before the 2019 training even began, I was fortunate to grab lunch with several of the ladies and we immediately started discussing issues that were important to them. Isolation was a hot topic. We all agreed that connecting with other patients in person alleviates some of the emotional challenges of fighting this diagnosis. Yet, several of the women represented rural areas of Nebraska, Montana, North Carolina and other regions where travel is complicated. Several advocates felt called to break down barriers and isolation that rural patients endure. Over our salads, we brainstormed creative options to link patients who are already driving hours for treatment to support groups. Their time is precious, and we brainstormed ways that technology might be able to overcome the distance.
During the opening session of the training, the group had the opportunity to start sharing their powerful individual stories. Repeatedly, I was inspired by the adversity that many overcame just to be in the room. Mothers raising special needs children, widows struggling with loneliness, singles navigating dating, many balancing demands of work, family and treatment—the lists were long and didn’t even address the physical limitations and fatigue that treatments cause. While cancer united us, dozens of additional “labels” defined us. Our cancer is only one component of the daily challenges we each faced.
Friday, we collaborated on an assignment to finesse a sample social media posting. At my table, we brainstormed ways to creatively showcase that clinical trials are not a last resort. We batted around visuals to grab attention and encourage everyone to explore clinical trials earlier in treatment. We selected a bright yellow traffic sign that read: NO OUTLET. DEAD END. The Facebook post read, “I raise my voice because…Clinical trials are not a last resort.” Our Instagram photo depicted the six of us dramatically different in our appearances with a tag line: “I raise my voice because…We’re all different, yet we’re all the same.”
The importance of clinical trials was a common thread throughout the weekend and especially important for one of my mentees. For approximately 5 years, she has participated in a clinical trial at MD Anderson Cancer Center for letrozole (Femara) and palbociclib (Ibrance). It’s her first line of treatment and she is passionate about getting others to volunteer for clinical trials. Her participation has opened the door for her to be involved in a steering committee at one of the leading cancer hospitals in the country. I suspect her training will help her be an even stronger advocate for trials in the future.
No two women had the same approach to their plans beyond Philly. One advocate wants to focus on scientific advocacy by creating a database to utilize epidemiology trials, while another plans to distribute “swag bags” to women facing cancer. In Florida, a legislative advocate hopes to offer pro bono legal support for stage IV patients, while in other areas community advocates want to assist young women navigating treatment and infertility. There are media advocates and policy advocates as well. The list of ideas was long. This is a busy group of resilient women eager to step up and say, “I will make a difference.”
The passion became apparent when we practiced elevator pitches. My pitch went like this:
“For 8 of the last 10 years, I’ve been fighting cancer. For the last 3 years, I’ve been fighting every day and I’ll continue to fight until the drugs stop working. Programs, materials and connections from LBBC made an awful situation bearable. Your donation to LBBC will make a difference to me and the 116 men and women who will die from breast cancer TODAY. Can we count on your support?”
Other pitches asked to host support groups in hospital conference rooms, share literature in clinics, speak to legislators on healthcare policy, and even have a voice on the nightly news. The room was a frenzy of activity as we shared our pitches and feedback with one another, building on each other’s ideas.
Saturday night we had the chance to see the results of advocacy and passion at work. Many of us watched and celebrated the premiere of the documentary “Love Always, Mom” produced by Hear My Voice alumna Trish Gonnella Russo and her husband, Greg. This young couple captured their struggles with infertility and the controversial decision to work with a surrogate.
The makeshift theater had a swath of red carpet and popcorn, and many of us fought back tears as we watched their story. The film was raw and gut-wrenching. It reinforced how we may feel isolated at times, but we are rarely working alone. They were brave enough to answer our questions about their 3 year journey and about advocacy outreach. It was invigorating to see the results of Trish’s work and how she brought awareness to unique problems that young metastatic breast cancer patients endure. And meeting their young son at the end of an emotional day was a fairy tale ending to this part of her story.
Before we checked out on Sunday, we swapped ideas and connections, emails and phone numbers. We committed to check-in later this spring (I will) and encouraged our mentees to establish small, reasonable goals and celebrate wins along the way. I’m never one for long goodbyes and it’s especially tough when you know the odds are against everyone in the group surviving the year. It’s another reality of living with metastatic breast cancer. Not all of us will be back.
I look at our time in Philly as planting the seeds for advocacy. Over the next few months, it will take time to tend to the field work and reap the rewards. The Hear My Voice advocates are infinitely smarter than the Little Red Hen. While my favorite hen worked solo to get things done, all by herself, the Hear My Voice advocates immediately recognized the value of working together to make a bigger impact.
They embraced the contributions and perspectives that each individual advocate brings to the broader story. Together their stories illustrate the many complex nuances of living with metastatic breast cancer that will continue to impact the narrative, from support groups in our hometowns, to research labs and clinical rooms in hospitals, to Capitol Hill and beyond.
We may not write fairy tale endings, but these advocates are going to impact the metastatic breast cancer story in ways that make a difference. And, when the advocates need counsel and support—I will. I hope you will, too.
Ann Camden, 48, of Raleigh, North Carolina, was diagnosed with a metastatic recurrence of HER2-positive breast cancer in 2016. You can learn more about the Hear My Voice program here.