Fireflies are incredibly beautiful at night. It’s easy to find yourself, with child-like anticipation and excitement, trying to “spot” where the blinking light of a firefly will appear next and then experiencing brief disappointment when their light goes dark.
Our Firefly Guides are like this, too. Leading a double life as they provide a tiny light “guiding” women diagnosed with breast cancer through their difficult journey, using their experience to spark hope and healing.
However, as breast cancer survivors, they too experience the darkness that comes with such a diagnosis, and the COVID pandemic exacerbates any anxieties and fears about their own health.
“I am still getting check-ups with my oncologist every 4 months,” begins Jessie* a Firefly Guide. “My last check-up was virtual. It was the first time that I wasn’t actually able to go into the clinic to get my physical exam.” She continues, “As a survivor, you always worry about a recurrence or ‘What is this ache?’ or ‘What is that pain?’ It gave me more anxiety not to have the in-person exam—not having my oncologist face-to-face, right there with me.“
Like Jessie, Firefly Guides can be in one of many phases of surviving breast cancer: finished with active treatment but still receiving surveillance check-ups, going through adjuvant therapies, years and decades into survivorship, or thriving with Metastatic Breast Cancer.
During the COVID pandemic, their role as Firefly Guides couldn’t me more important, as women find themselves attending screening and diagnostic procedures, clinic appointments, treatments, surgeries, and hospital stays . . . alone. “I had somebody with me at every single treatment,” Jessie states. “I just cannot imagine going alone. I can’t imagine the anxiety and the fear. The unknown.” With great emotion, she finishes, “It makes me so sad for (my matches). I can’t imagine.”
For the three women that Jessie has been matched with since she became a Firefly Guide, two of them were matched since the COVID lockdown began and Firefly Guides began offering support that was completely virtual. Her “Firefly Sisters” are all currently in the chemotherapy phase of treatment, and she reports that going to treatment alone is a huge challenge for each them. “They don’t know how the chemo drugs will make them feel, what reactions they will have, if they will get sick,” Jessie voices. “There’s just so many unknowns and they’re all so scared.”
With COVID, Jessie has moved from going in to work every day to working remotely from home. This has allowed her to offer her Firefly Sisters support in a unique way. “I tell them, ‘Hey, you know, I work from home. I have my phone nearby. If you need to text me, if you need to Facetime me, if you need to call me while you are there in the infusion chair, go for it. I will watch my phone.’
In addition, Jessie has adopted a brilliant mentoring habit during COVID: “I mark my calendar with everyone’s chemo dates and what round they’re on so when I am working from home, I can remember to text them and ask how its going, just to check in.” She reiterates somberly again, “I just cannot imagine how lonely and scared they are feeling.”
While Jessie prefers the connection that results from meeting in-person, COVID has altered her Firefly match interactions. “I like video calls so we can see each other. It’s so nice to see someone and feel their energy and see their facial expressions.” She laments that it isn’t the same as an in-person conversation in a coffeeshop, but knows how important this fact-to-face interaction is for her mentees.
As a survivor and a Firefly Guide, she offers great advice during COVID for fellow Guides and other women recently diagnosed with breast cancer:
- For Firefly Guides: “Be more attentive on your match’s chemo/appointment/surgery days and send them a text message or call because we all know what it is like to sit in a chair and wait.” Jessie also stresses the importance of video calls for face-to-face interactions, which can help with establishing a good relationship.
- For Women Recently Diagnosed: “Be very aware of what is going on in your own body. Right now, we can’t rely on our oncologists to do an in-person physical exam.” She continues, “We need to be our own advocates. If there is something that doesn’t feel right, we need to insist on an in-person appointment, despite COVID.”
Jessie ends the conversation with some great self-care information that we can all use during this COVID crisis. “I had a hard time balancing work and home life and my days became a blur. So I schedule an in-home “spa day” for myself, with a facemask, manicure, and chick flick.” In addition, she is grateful that her dogs need to go our for walks, “It easy, when you’re always at home, to get lazy, so having a dog is nice. It forces me to get outside, get moving, and get fresh air.”
A tremendous Firefly thank you to Jessie, for her volunteer work as Firefly Guide. Like all Guides, she is incredible light to the women she is mentoring during this COVID crisis.
*Name has been changed to protect privacy.
Written by Amy Tix, breast cancer survivor and Firefly Staffer, who agrees that in-person and face-to-face interactions are really important in building relationship! Thanks for the reminder, Jessie!