The News Gazette about BCforum

Gifford Woman Active in Cancer Support

April 30, 2000

By Lynda Zimmer
©2000 The News-Gazette

Barb Fortin of Gifford went to Elko, Nev. last week to visit a friend she never had seen before.

Wearing an "I Believe in Angels" sweat shirt, Fortin flew from Willard Airport to Elko, Nev. Her angelic mission was to deliver a handmade afghan to a fellow breast cancer sufferer who she met on the Internet.

"You can't just talk about breast cancer; it's too intense," said Susan Frisius of South Hadley, Mass., who started the chat group four years ago and accompanied Fortin on the Nevada trip. "The talk is one-third cancer, one-third 'how ya doin' and 'how's your daughter doin' in school?' and one-third fun and ha ha's."

"We make up Top 10 lists about 'Why being bald (from chemotherapy treatments) is good for you' and '10 things to do with a prosthesis' - such as freezing it and putting it in the punch bowl so the punch whon't be watered down," Frisius laughed.

Fortin added, "The goal is, when you're hurting, sad or crying we try to make sure you're laughing when you get off the computer ... You could have a rotten day, but then there's someone there to say, 'I've been there and done that and you'll be OK.'"

Four years of online chatting among hundreds of breast cancer victims has led to several face to face meetings.

"There have been four visits - to Indiana, Georgia, Virginia and now Nevada - to take gifts to women whose physical and mental health the chatters especially were concerned about. Fortin has taken part in two of those visits, plus two annual, just-for-fun gatherings, get-togethers for chatters, their partners and relatives in Colorado, Georgia and Oklahoma so far.

The online cancer patients know each other by a variety of nicknames. Fortin wanted to be Grandma, but when she found out that name was taken, she became Grand. Sometimes they debate about whether to call each other by computer nicknames or real names when they meet. Fortin likes Grand, but another woman from Asheville, N.C., said she did not want to be called by her nickname Ash in person.

The trip that Fortin and Frisius took last week was to visit Elway, a woman who is a big fan of former Denver Broncos quarterback John Elway and took his last name for her Internet chats.

Support group chatters are worried about their friend Elway because her cancer has recurred several times and she has had the added stress of moving to another state after her husband lost his job.

They have gotten the famous athlete Elway to write a letter to their friend, and then Frisius knit the afghan out of pastel-colored yarns for her.

Nineteen members of the Internet support group sent cloth ribbons to tie onto the afghan. Fortin's was a white ribbon with iron-on angel picture patches and the words "love" and "peace." Other supporters added ribbon roses, a Canadian flag, painted evergreen trees, metal hearts and metal lady bugs to their ribbons. Penned-on wishes included "time," "courage" and "trust."

Previous gifts have included a quilt for a woman in Atlanta and tiny Wee Care gifts, individually wrapped for women in Kokomo, Ind., and Suffolk, Va.

Besides laughs and friendships, the chat room also features amateur medial talk.

"Access to knowledge about treatment is very regional," Frisius said. "One of the things that happened to me was that I was growing lumps in my forearms and thighs. A chat room friend from Georgia said she could not take Tamoxifen because of the side effect. My doctor didn't even know about it. Doctors can't keep up with everything."

Practical advice from the chat room includes:

- "Get your mammos and call your doctor and get your results," Fortin said. "I once didn't get my results until six months later. I had good doctors, but something got lost in the shuffle. You're dealing with human beings who make mistakes."

- "Drink water, drink water, drink water," to head off effects from chemotherapy, said a chatter nicknammed Zonga.

- "Shave off your hair," Fortin said. "Or get a buzz cut before chemotherapy," Frisius said. "That makes it less traumatic when hair starts falling out."

The computer-based support group has worked well for those who are new to an area and don't know where to turn.

Back in 1990 when Fortin was diagnosed, she said, "Try to imagine the worst flu you ever had. It's worse than that. It takes all your energy to get off the couch to go to the bathroom."

"In 1997, my husband got transferred from Kankakee to Champaign," Fortin said. "I had to leave my kids and grandkids, but at least I could get on the Internet and chat."

Frisius said, "I was so sick when I was on chemo, I couldn't go to a support group, but I heard that patients who go to support groups live five years longer, on the average. Frisius said radiation burns also prevented her from dressing and driving.

"I found a chat room, but no one ever came there," Frisius said. "Once I sat there for 50 hours, and my kids said I had really flipped out - staring at a blank screen. I went to other breast cancer sites and left messages. Three people finally answered and I built my own chat room from there."

To access Frisius' chat room, go to the Web site www.bcfoum.org and scroll down to click on a banner of pink ribons.

Chatters usually are on line from 7 p.m. (central time) until sometimes as late as 11 p.m. every night.

Online friendships can supplement older friendships.

"When you have cancer, a lot of friends abandon you," Frisius said. "They get scared, and our society doesn't like handicapped people."

Fortin said, "Your energy is down, and it takes a long time to build it up again, computer friends awith the same thing are more understanding, more patient.

Some of the current talk is about a syndrome the women call "chemo brain."

"You lose words and forget things," Frisius said. I used to always be able to remember where I parked my car, but that capability is just gone. Oncologists say, 'It's all in your head,' but now there is research starting about how chemotherpay may kill some brain cells."

Fortin remembered trying to talk about some fruit, but she could not remember the right word. "You know, it's yellow, you peel it and monkeys eat them," she said. An Internet friend responded with "Bananas!"

"Now, whenever we can't remember something, we just say 'bananas'" Fortin said.

Barb Fortin of Gifford, left, and Susan Frisius of South Hadley, Mass.,
show off a colorful afghan they decorated.
They were preparing to depart from Willard Airport last week.
The women delivered the afghan to an Elko, Nev., woman they became acquainted with
while talking in a breast cancer support chat room on the Internet.

Reprinted with permission of The News-Gazette.

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