Circle of Friends
Support System continued...
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.