The surgery and the chemo and the radiation had been too much for Susan Frisius. In the six months after she was diagnosed with breast cancer in 1994, she rarely ventured from her South Hadley home, except to see her doctor or to go for her treatments at the Baystate Medical Center in Springfield. She was not strong enough for much else, not for work, certainly, nor for meetings with other women, women whose own experiences, knowledge and understanding of the disease might have helped her.
"I was too tired and too sick to go out at night to local support groups," she recalls. "I didn't do anything."
She turned instead to friends and family. She had one of her two teen-age daughters at home, but the rest of her family lived in distant places, a sister in Worcester, another in Washington state, her parents and another daughter in Costa Rica. And her friends, while sympathetic, could not understand. Not really. During those months, Frisius experienced a kind of isolation known only to those who've been stricken with a life-threatening illness.
"When you get breast cancer you enter a world you know nothing about," she says now, 2 years after her recovery.
"When you have cancer a lot of times people abandon you. I was so needy and people did help me out, but not enough."
Last Tuesday, Frisius and Pat D'Andria, a woman from Norwich, Conn., boarded a plane together bound for the deep south, bearing a gift in a small Samsonite suitcase for a friend neither had ever met, but one they know well and with whom they share an intimate bond. The gift was a quilt with 16 panels, each one hand sewn, embroidered, or painted by a member of the BC Forum, a breast cancer support chat room on the World Wide Web. A small panel on the back side reads:
"Stitched for KayKay by Pat D'Andria, March, 1997, with friends we have met on the Internet." KayKay is the BC Forum nickname of Rhonda Burge, a woman who lives in Macon, Georgia. Burge is 50 years old, the same age as Frisius. Her breast cancer has metastisized, meaning it has spread to other parts of her body. Because of a heart condition, Burge cannot receive chemotherapy or radiation treatments. She recently suffered a stroke.
"She can't be treated," Frisius said the day before her trip. Had Frisius not bought a computer last December, she might never have connected with Burge, D'Andria nor with any of the other 40 plus members of BC Forum, who make their homes everywhere from Alaska to Maine, and California to Costa Rica.
The "BC Forum friends," as they call themselves, are not only women who have or have recovered from breast cancer, but women who have had breast cancer scares, and friends and family of women who've had breast cancer.
A few of the members are men -- sons or husbands of breast cancer victims.
"Unfortunately, we don't have any men who've had breast cancer," says Frisius. "And men do get breast cancer, which a lot of people do not know."
Having outgrown her word processor, Frisius bought the computer to write a book about breast cancer. She started searching the Internet for information about the disease and found the BC Forum on the Web page for Lifetime TV, a women's cable station in New York (www.lifetimetv.com/chat).
"I was looking for a support group for cancer," she says.
The forum, though, was then largely inactive. Frisius immediately began to recruit members, sending out e-mail messages to people affiliated with breast cancer groups and sitting sometimes for hours in front of her computer, waiting for someone to log in to BC Forum.
One of the first people she found there was Gail Hair, sister of Rhonda Burge.
"She got involved because her sister had cancer," says Frisius. "She happened to come in while I was sitting there."
The membership quickly grew and now the group meets every Sunday, Wednesday and Friday nights at 8 p.m., where members share stories and information about breast cancer so they can deal with doctors and make more informed decisions on treatments.
"People are able to come days after having a mastectomy," says Frisius. "Because they're at home, they can just zing the computer on without expending huge amounts of energy. Going to a support group at night when you're on chemotherapy takes a huge amount of energy."
Frisius still has not been able to return to her work as a bird breeder. There are too many residual side effects from her cancer treatment, she says. Though she receives no pay for all her efforts, she is devoted to BC Forum, where the other "gals," she says, think of her as the leader of the group.
"This is my give-back to cancer," she says, "my contribution to cancer. I could have really used this. If this had been there for me it would have been really fabulous."
So now, Frisius is there on BC Forum, for others and herself, every night, from 8 p.m. until whenever. The beauty of the live chat room, she says, is that visitors get instant support when they need it most. No one ever has to feel they are alone. She will make sure of that.
Picture caption: Susan Frisius with quilt she delivered to a friend after corresponding on the Web.
Zipper, Patsy, Pattycat, SP
Barb, Katz, Zonga, UncleAl
BCforum names, Red, susan, Zookeeper
Quilting group, Vi, Mombear, Lynn
Squares on the back and not shown by Elway, Wildhair and the Post Office folks where Wildhair works.
Reprinted with permission of The Hampshire Gazette.
\|/ (__)
___(~.~)```````````, ___(OO)
/| |\_' _ _ _ _ _ _ _;| | \/
/ | |_ _ _|_ _ _|_ _ _ | |
* | | | |
| |__________________| |
^ ^ ^ ^
Susan under her blankie on the Cowch
We meet at 8 pm EST every evening for information, hugs and laughter!
To get there, click on the pink ribbons!!!!
Please email me if you have any problems accessing BCforum!
A listserv is an email group. To join a breast cancer or related listserv, click on the pink ribbon icon!!!!
Please buy all your BOOKS/VIDEOS/CDs/DVDs/GIFTS
through the link on my site to amazon.com.
A percentage of each item purchased through the link on my site
will go to help those with breast cancer who have met on the Internet,
meet in person!
