I pretty much lived on the breastcancer.org website after I was diagnosed with breast cancer 10 years ago. It was welcoming and easy to navigate, and no matter how unusual your particular situation was, there was a topic thread on the discussion board with people facing concerns similar to yours. So I milked it for firsthand accounts of chemo, mastectomies, hair loss, and neuropathy. It was kind of like the SHARE helpline, only you typed instead of dialing.
Recently I polled my fellow volunteers to find out what online resources they recommended. And I discovered something wonderful: Several SHARE volunteers have used their cancer experience to create remarkable and very helpful sites of their own! Here are three:
"Shift happens." That's the idea behind the Identity Shift Project (http://theidentityshiftproject.org), the brainchild of Jessica Safran. Diagnosed with late-stage ovarian cancer five years ago, Jessica was struck by the rapid changes in her appearance. She used photography to document her bloated belly, her surgical staples, her grapefruit-size tumor, her bald scalp. And all those photos gave her a comforting outlook, she says: "I am not my cancer. I could look at all the ways cancer changed me and could contemplate them, while still remaining … the rest of me." The empowerment she felt in looking at the photographs inspired her to share the experience with others by co-founding Identity Shift with her friend, photographer Julie Hassett Sutton. Its mission is to bring "new perspectives to healing through artistic collaboration with people experiencing significant life change" by photographing and interviewing people living with cancer and other transformative events. "It's an opportunity to convey who these people are now, and who they are becoming," she writes. The photo-essays, edited collaboratively, are published on her website, along with posts on topics like doctor-patient communication—a subject she recently explored in a workshop she led at SHARE.
Like modern women of all ages, Jacey Powers turned to the Internet when she was diagnosed with breast cancer in her 20s. Inspired by the blogs she found, she decided to create one of her own. But since she's a professional actress, she undertook a vlog, or video blog. That Time I Had Breast Cancer (www.ThatTimeIHadCancer.com) is informative, comforting, humorous, and utterly charming. You don't have to have cancer to find yourself binge-watching Jacey as she finds her lump, fights to get a free mammogram after her insurance runs out, explores her treatment options, scrambles to harvest her eggs in hopes of having a baby someday, and discovers cold caps, a technology that preserves her beautiful wavy hair during chemo. A faithful re-enactment of her experience, it's accompanied by useful written commentary and helpful resources. At 18 episodes and counting, the production is currently on hiatus but will resume when Jacey, who volunteers on the breast-cancer helpline, returns from an out-of-town acting job this summer.
Have you ever struggled to parse the nuances of news stories about cancer research? Scratched your (bald) head trying to make sense of statistics about different chemo regimens? Scoured Amazon for reliable books about cancer? Lisa DeFerrari, a volunteer on the breast-cancer helpline, shares your frustrations. Diagnosed twice with breast cancer—at 35 and 47—she started a blog to break down research reports for her own understanding and to spread the word about "just what we do know and where we are in efforts to end this disease." In her blog, After 20 Years Cancer Research (after20yrs.com), Lisa writes about new treatments, clinical trials, survivorship issues, and risk factors for cancer. What's with the name? "I write from the perspective of my own experience of having been diagnosed with breast cancer over 20 years ago," she says.
So to answer my own question about recommendations for online resources, I'd strongly suggest these three. What online resources would you recommend?
Megan is a volunteer on SHARE's Breast Cancer Helpline.