“A Win-Win-Win-Win”
As the Firefly Sisterhood grows, we’re proud and grateful to see increasing numbers of clinicians referring their patients to us. We recently reached out to two of them to hear their perspective on the ways their patients benefit from being matched. Alicia Cain is the Oncology Social Worker at the United Breast Center/Virginia Piper Cancer Institute in Saint Paul, MN, and Margaret Bohman is the Nurse Navigator at the Fairview Southdale Breast Center in Edina, MN. With more than 17 years of combined experience in the field, Ali and Margaret have worked with thousands of breast cancer survivors, and they now both routinely refer women to the Firefly Sisterhood.
One reason Margaret and Ali cite for their confidence in the Firefly Sisterhood is the thorough training the Guides receive. Margaret notes that the Guides are very insistent about not giving medical advice, which, she says, is reassuring to both medical professionals and to the recently diagnosed women themselves: “I have ladies who say that practically complete strangers will tell them what to do—people they kind of know from work, or kind of know from church, will offer unsolicited opinions about treatment. But the Guides make it clear that that’s not their role.” Similarly, Ali says, “The [Guides] come in with no agenda—it’s different from talking to your loved ones, who maybe have strong opinions about what they want you to do.”
Instead, they see the Guides offering their patients crucial emotional and practical support that can only come from other survivors with similar experiences. “A lot of us know somebody who has breast cancer,” Ali notes, but there are so many different diagnoses and treatments that “it’s really beneficial for women to talk with someone else who has walked their same path. The beauty of the Firefly Sisterhood is that they can do a really specific match.” Margaret echoes these sentiments, noting, for example, that younger patients often prefer to communicate much differently than older patients (via text or other electronic mode). The Firefly Sisterhood can take such lifestyle factors, in addition to things like work and family situation, into account when matching women—something that other organizations don’t have the capacity to do.
Margaret emphasizes the importance of the emotional validation that recently diagnosed women receive from their Guides, especially around sensitive issues related to sexuality that they may not feel comfortable discussing with friends or family. Further, she describes, “It’s such an emotional boon for them to see someone who has survived. Because even though they might see thousands of women [participating in] breast cancer walks, even they know there are survivors out there, there still is this huge looming fear that grips so many patients…and it’s amazing how positive it is for them to look at someone and say, ‘Oh my gosh, you did survive, you look normal, you look healthy, you look fabulous!’”
Both describe how the Guides’ understanding of the day-to-day ups and downs of life with breast cancer means that their insight about what to expect and tips for recovery can sometimes be more helpful than what doctors or nurses provide—something that Margaret thinks is especially true for women dealing with the unpredictability of chemotherapy. Ali also notes that for her patients who are struggling with feelings of isolation, the opportunity to have their experiences of treatment and recovery normalized by hearing about Guides’ experiences is enormously important.
Ali and Margaret have also see benefits for their patients who become Guides themselves. Ali describes, “When you get this diagnosis, you’re thrown into this world you’ve had no reason to know anything about, and you’re forced to become an expert…so for a lot of women, they look at this as an opportunity to put that knowledge to use and to make a positive out of a situation that’s obviously something no one ever wants to go through.” And Margaret notes that for her patients who are looking for ways to give back, the warmth, positive energy, and personal nature of the Firefly Sisterhood is what draws them to volunteer.
“Firefly is a win-win-win-win…. It should be available to all breast cancer survivors,” Ali describes. Along with Margaret, she encourages other clinicians to utilize the program without reservation: “We’re fortunate to have such a unique and beneficial program. It’s imperative that the healthcare community get behind the Firefly Sisterhood and support it to make sure it continues to be a resource for patients.”
This Is Living With Cancer