It's early evening in Norfolk, Va., where "Janice_78" lives. Across cyberspace, the "Pink Bus" is ready to roll -- ready for breast cancer survivors like her to hop aboard.
Riders on this virtual bus are slogging their way through scans and surgeries, making the best of bald heads and insurance hassles. On the Pink Bus, they get hugs, tears, maybe a few (virtual) strawberry margaritas. As they have found, just typing a few words -- posting a lone message in the abyss -- can bring real friendship.
The Pink Bus is a joyride, you might say. It departs regularly from one of WebMD's message boards, connecting the group of women and their loved ones who regularly support each other on Breast Cancer: Friend to Friend. This cyber meeting site is one of more than 150 boards devoted to health and lifestyle issues and conditions at WebMD.com.
Medical studies reinforce the importance of support for women with breast cancer, especially after treatment. In one study, women who had recently completed treatment for breast cancer reported having emotional problems and difficulty functioning in social situations. However, with social support they showed significant improvement in their overall quality of life. The Internet has opened a floodgate of opportunities for women seeking support, enabling them to reach out from the comfort of their homes, no matter the time, date, or even the weather.
Just 10 years ago, this wasn't possible -- an amazing Internet connection among so many breast cancer survivors, all fighting the same battles, all knowing too well what another is thinking, feeling. In the 1970s, when my own mother faced breast cancer surgery, she knew no one who had traveled that road. She would have loved the Pink Bus.
October is National Breast Cancer Awareness Month, a time when these battle-weary women find themselves in the spotlight. Raising awareness, of course, is the goal. But for some, the pink ribbons and gimmicks are offensive.
"If you're newly diagnosed, you're scared," says Janice Haines (a.k.a. Janice_78) . "And if you're metastatic, you've pretty much reached the end of your rope. You want a cure, and you want it right now." Still, no one denies that education is critical. "Breast cancer is much more out there than it used to be. People are getting diagnosed at younger and younger ages."
'You Feel So Alone'
In 1998, Haines was among the first to join this message board. She had just finished treatment for stage II cancer; 10 of 16 nodes were positive. She was scared. She was jealous.
"When I was first diagnosed, I didn't know anyone who had this," says Haines. "You feel so alone. You feel depression, anger, jealousy. Your friends' lives go on. They can go home to their families, whereas my life was torn apart. At the doctor's office, the nurses were so supportive and so kind. But at the end of the day, they could clock out and go home. I couldn't. I felt bad feeling that way, feeling jealous." When she went online, she found kindred souls who understood. "I could talk it out. I could vent," she says.
She also gained perspective on her prognosis. When her oncologist advised her to have a new type of treatment, she reached out to the group for support and information.
"I went online and found that many who'd had the same treatment were doing well," she says. "It was good to know that even though the statistics weren't good, it was survivable."
Today, some eight years after treatment ended, Haines is still doing well. "It's pretty much over," she says. "I don't much think about it until it's time to go to the doctor again." Although she has other volunteer gigs, Janice_78 has remained an active voice on the Friend to Friend message board. "I love being able to use my experience, to offer some hope," she says.
Support System
"Elsa" is the current message board moderator. "I love this group of ladies -- they have faced life-changing circumstances with such tenacity," she says. "They're all in various treatment phases, they find each other, they're open to each other, to new people. They're accepted for obsessing about their disease. Friends and family get tired if hearing about it, they don't know what to say. These ladies let them talk."
The message board is all about openness, says "Olivia," who once moderated the board. "They talk to each other on a very personal level. There's a lot of venting, a lot of sharing of frustrations. They talk about everything from recipes to what the kids are doing this weekend to their treatment. They share anger at a doctor who isn't paying enough attention. They talk about a medication -- how does it affect you, have you tried it before. They talk about everything including their sex lives."
There's great loyalty, too, Elsa notes. "They roll out the Pink Bus when someone is having an emergency, and everybody jumps on. When someone brand new comes on board who has just discovered they have breast cancer, you see a whole rallying of support. No matter where you are in treatment, there's someone out there who can relate to you."
The women trade advice on every aspect of their experience, from insurance to wigs. "You hate to see people make the same mistakes you did," Haines says. "When I found out I was going lose all my hair, I went into panic mode. I let someone talk me into a wig that cost $300, and I ended up hating it. And, my insurance company refused to pay for it! That's why I tell people about their options, that you don't have pay an arm and a leg."
Certainly, the message board is not all good wishes and happy endings. Members have disappeared from the postings, and never heard from again. "You don't always know what's happened, but you can guess," says Haines. "Spouses and family members aren't always aware of the boards, or they don't know to contact us. They may not even be computer literate."
From Cyber to Live
Some family members, such as Haines' husband, John (notorious for the jokes he posts), join in support of their wives online and offline, as he helped her organize a get-together for the board survivors in Williamsburg, Va., in April 2000. Some 30 board participants and their families made the trek to finally meet each other in person. Over the years, small weekend get-togethers continue to be held around the country. "It was just about having a good time," Haines says. "John and I have made lifelong friends with these people."
There's even a cookbook of the ladies' favorite recipes, with proceeds going to the Susan G. Komen Breast Cancer Foundation. When the book first hit the shelves in 2001, the media took notice. Rosie O'Donnell's TV show was the rage that year, and Rosie invited the cookbook authors to make a guest appearance. "It was really cool," says Haines.
The televised appearance helped many put a name and a face to board members they had known online only by their screen names. Breast Cancer: Friend to Friend has remained the vibrant and supportive place created by its original members. Breast cancer in the United States has become the most common cancer in women (after skin cancer), yet the death rate has declined due to earlier detection and improved treatment. Women and their families continue to seek out each other and journey together on the powerful Pink Bus of hope and community.
