Sometimes when newly diagnosed women call SHARE, they're surprised by how well informed the breast and ovarian helpline volunteers are. But most of us weren't always so knowledgeable. Before we were diagnosed, we had no reason to know much about the world of cancer. Along the way, we each learned what we needed to know. I asked the volunteers to share what they know now that they wished they'd known at the outset.
Bonni, an ovarian cancer survivor with a BRCA-2 mutation, wishes she had known how supportive her husband would be during her arduous surgeries and chemotherapy. It would have saved her the worry that he would lose interest in her or find her unattractive.
Diane, who schedules volunteers for the breast cancer helpline, was terrified about having chemotherapy for her stage 2 breast cancer. "Before I began treatment I knew nothing and what I did know was based on assumptions from the 'What if' part of my imagination." She wishes she'd known that her hair would grow back, that chemo wouldn't rob her of her sanity or sense of self, and that there would be good days among the bad. "During treatment, I went to two weddings and a baby shower and even went on a boat ride!" she says.
For more than four years, Judy, a SHARE volunteer who was diagnosed with ovarian cancer in 2000, didn't buy a single piece of clothing even though she'd lost so much weight during her treatment that her old clothes no longer fit. She was so afraid of recurrence, she says, that she didn't expect to survive. She wishes she'd known that "the two-year mark is a kind of turning point," after which a recurrence is less likely.
"I wish I'd known that 'invasive' does not mean 'metastatic,' " says Agnes, who co-facilitates one of SHARE's breast cancer support groups. "I wouldn't have been so scared after reading my pathology report. She also wishes she'd known that the implant she received was known to have failed in large numbers of women and would soon be taken off the market. It would have been helpful to know that "everybody's cancer is different and mine would not follow the same path as the terrible cases I was familiar with."
Barbara B., diagnosed with ovarian cancer in 2003, wishes she'd known how fortunate she'd be. "Everything was laid out so gently and succinctly for me all along my journey that it all fell into place despite the frightening diagnosis."
"I learned that people can be kind and helpful," says Meryl, who volunteers on SHARE's breast cancer helpline. She was able to work throughout her treatment, thanks to the flexibility of her supervisor, who gave her time off for doctors' appointments, chemo, and sick days when she didn't feel well. "I did not have to worry about my job," Meryl says. "That gave me strength and courage to complete my treatment and go on from there."
"I wish I had been savvy about how some providers in the medical world operate," says Barbara R., "and that doctors may make referrals not to the most competent surgeon but to one in their hospital network."
"I wish I had known that the recovery from my bilateral mastectomy wouldn't be nearly as bad as I had feared," says Mary, who was diagnosed with breast cancer when she was 34. "I had heard that I wouldn't be able to lift my arms for weeks, that I would need someone to brush my teeth for me even! Couldn't have been further from the truth!"
Bernadette wishes she'd known that during chemo, profound fatigue could suddenly overwhelm her, requiring her to lie down and sleep immediately. She and her alarmed friends and relatives soon came to understand, however, that after the episode passed, she "would rejoin in the fun."
In my case, I wish I'd known that I wouldn't always feel as upset as I did in the first few weeks. I wish I'd understood that my friends wanted to help and I should let them. I wish I'd known that small setbacks didn't necessarily foretell a bad outcome. And I wish I'd known that support groups really are supportive!
The volunteers who answer the SHARE telephone helplines have centuries of collective experience to offer and—even more important—good listening skills. Give us a call. We'd love to hear from you.