By going public with the details of their cancer journeys, patients and survivors can pave the way for understanding and support.
Patients with cancer sometimes need to vent, and the things they say can sound frightening to those who haven’t experienced the disease.
But that doesn’t mean there can’t be a conversation: In fact, by sharing stories about their cancer journeys, patients and survivors can start one. By discussing their experiences, those who’ve had cancer can educate both the newly diagnosed and the larger community about the issues that come with the illness and how to discuss them.
The value in publicly sharing these insights was the key takeaway from a May 31 conference on cancer stories hosted in Chicago by The Atlantic magazine.
“The more you talk to other people, the more you realize that patients with cancer don’t get a chance to talk, because people don’t know how to talk to them when they’re saying scary things like ‘I really don’t feel well,’ or ‘I don’t think I can make it through the day’ or ‘I’m not sure I can do the next round of chemo,’” said Josie Leavitt, a comedian and breast cancer survivor from Vermont who was one of the day’s speakers. “Being able to talk about it and share that in a way that’s not judgmental and lets all of us share our stories — that’s where the power comes. We then give everyone who’s not going through cancer the tools to listen better to patients with cancer.”
At the same time, storytelling can help patients through the cancer experience, as Leavitt found when she created a one-woman show about her journey last year.
“Knowing I could tell my story made it easier to go through treatment that got increasingly harder,” she said.
In a panel discussion, Leavitt and other speakers explained why they’ve chosen to be open with the public about some very personal experiences.
Matthew Zachary, who had brain cancer in his 20s and later founded Stupid Cancer to help support adolescents and young adults with the disease, agreed with Leavitt that storytelling is an altruistic act.
“I like attention, but I didn’t want this attention,” said Zachary, who told the audience how brain cancer interrupted his career as a concert pianist and ruined his 20s. “The whole point is that I like to be able to help people…the idea (is) that you have the ability to do something you believe is valuable, and storytelling is a way to get that out there.”
Tamika Felder, chief visionary for the patient advocacy group Cervivor, didn’t want to be in the spotlight, either. But after her treatment for cervical cancer, the advocate who had worked as a television producer and considers herself a “natural storyteller” felt compelled to share her story, which involved the surgical removal of the top third of her vagina and the loss of her fertility.
Felder’s public talks were her response to people who considered cervical cancer an “easy cancer — you just get a hysterectomy and you’re fine,” she said. “It’s up to me and my survivor sisters to make it real, to say what brachytherapy is like, and getting your vagina radiated from the inside out. That’s what cancer stories are all about for me.”
She added that, “When we talk about the HPV vaccine and why it’s so important to have a vaccine that prevents (cervical and some other) cancer(s), stories are powerful.”
People respond strongly to those stories, said Jason B. Rosenthal, board chair and advocate with the Amy Krouse Rosenthal Foundation, which funds ovarian cancer research and is named for his late wife.
“When I first spoke about (my caregiver experience) in a way that (allowed me) to control the message, I got such an incredible response from people…(including) those suffering loss and going through grief,” he said. “It inspires me to move forward.”
He added that, as one of the few men routinely speaking out about this kind of loss, he has found extra meaning in the experience.
Opening up about some of life’s most personal and challenging moments can be very difficult, the speakers said.
“There’s definitely this vulnerability that comes with it, especially when I was dating and knowing someone could search and see that ‘She talks about a sexually transmitted virus all the time, and she’s talking about her vagina — oh, wait a minute, she’s lost part of her vagina: What does that mean?’” Felder recalled. “I’ve had people who can’t deal with that.”
She revealed that she’d been crying just an hour before giving her talk at the conference, because dwelling on the loss of her fertility still upsets her so deeply.
“It rips open something so painful for me,” she said, “and that’s what cancer does: It teaches you how to survive, but it also hurts you and makes you a shell of what you once were.”
Despite that pain, “It’s really important to talk about it and not be the patient with cancer who puts on a brave face and soldiers on,” Leavitt said. “To share that vulnerability is meaningful for the audience, because they know you’re sharing a part of yourself.”
She recalled the response she got when she gave a very candid interview to a local newspaper about how to get through cancer treatment.
“I was really honest, and people were so appreciative of that — they needed it and really embraced it,” she said. “They’re ready to hear what happened, because people don’t know.”