Long before sistahs were strutting to help fight breast cancer or clubbing at breakfast time in the Lou with other women survivors, the Sistah Connection Breast Cancer Support Group at St. Louis ConnectCare has been meeting every third Thursday of the month, rain or shine since 1988, on the chance that there may be another women who needs to connect with other women who’ve had breast cancer. And before that, they were meeting at Regional Hospital when it was open at the same location at 5535 Delmar.
Let’s be clear: There is no competitiveness, contempt, nor cat fights among local breast cancer support groups, large or small. Unfortunately, there is way too much breast cancer to go around. The good news is more than one organized group that shares one purpose in their own unique way. That purpose – to provide the type of support that breast cancer patients need along their journey of treatment and all that is involved in their new life as a breast cancer survivor.
Four women, none who had breast cancer themselves, were individually trying to figure out ways to support African American women who did have breast cancer.
They were Gerri Phelps, Iva Gandi, Carol Horton and Rosetta Keeton, who still facilitates the group today.
“We began to talk about how we could do something for our own people,” said Keeton, who is the community services manager at St. Louis ConnectCare.
Keeton said there were limited to nonexistent support services offered for women who lived in North City who had survived breast cancer.
“Many of these women lived in households that could not afford the luxury of purchasing a prosthesis or to keep their lights on or rent paid after surgery,” Keeton said. “They had no avenue to share their thoughts and feelings about their lives or personal self with others who looked and lived as they did.”
Melva Taylor of St. Louis found out about the Sistah Connection 16 years ago from a clinic receptionist at then Barnes Hospital, where she was being treated for cancer. She started attending Sistah Connection meetings when she was undergoing chemotherapy.
“It was about 40 women – they were all black. It was the first time I had experienced that – even in chemo, I had been around a lot of white women,” Taylor said. “And some of the breast cancer meetings I went to were all white.”
Being surrounded by women who shared similar lifestyles as her helped Taylor to relax more and feel open to share what was on her mind.
“They were having issues like I was having and we didn’t have cooks – we didn’t have anyone who would come out and actually take care of us,” Taylor said. “These women were taking care of themselves.
The first group she attended did not offer the type of support Taylor needed.
“It was so different from the other and it was weird. I was sitting in a meeting with the white women and I didn’t have a cook, I didn’t have a nutritionist and I didn’t have a nanny – and it was unbelievable how many actually did. And I was like, ‘I really cannot relate to this,'” Taylor recalled.
At the Sistah Connection, Taylor said she learned practical matters that related to her life, like how to cook and eat healthy on a budget, issues that breast cancer can bring upon a marriage, and minimizing some of the effects of chemo.
“Things like, don’t eat out of silverware because it will make you more sick…when you are taking chemo, the silver from the utensils, it will make your tongue quiver and your taste buds go away longer – you’d have a funny taste in your mouth, and I was experiencing that,” Taylor said. “And don’t drink ice water, because it hurts.”
Additionally, women attending meetings at the Sistah Connection addressed some of the cultural nuances of African American women.
“All my hair was out. They were telling me different little treatments, like, ‘No, you don’t need to spend a lot of money – get you some regular Royal Crown grease and mix it with Sulfur 8,'” Taylor remembered. “And it made my scalp feel so much better and it wasn’t drying out and it wasn’t flaking anymore.”
Virginia Brown of St. Louis became a part of the Sistah Connection in 1999 as a clinic patient at Regional Hospital, where she had surgery and treatment for breast cancer.
She had a mastectomy, and learned a lot about the disease, depression and coping through talking with other women who could relate to what she was going through.
“It was a lifesaver. Mentally, I was being supported; I was very depressed, disgusted and all of that,” Brown said. “That told me I could do this – when I came to the support group, whatever was in me, on me, out of me – I didn’t have no knowledge of no cancer or anything until I got into this support group.”
Education, emotional support, wigs, a listening ear, a crying shoulder, caring hugs – all the things she received, which Brown now offers to other women who make that special connection.
“If I did not have that support group to sit down and talk to me and have patience with me and give me some information,” Brown explained. “The number one issue for me – I had love.”
Leola Cole of Florissant, Mo. became a part of the Connection during treatment at St. Louis ConnectCare following a double mastectomy in 2003.
“Family support is good, but when people are going through the same thing as you are going through, it’s even better,” Cole explained. “Everybody new that would come in and share their story – it was something different to hear how everybody had to go through the same situation, but it happened in a different way.”
And over the years, they have supported each other through life trials totally unrelated to cancer.
“We are real close and I hate to miss my meetings,” said Cole. “Every third Saturday, I plan nothing for that Saturday, and if I am out of town, I always call and let them know I can’t be there.”
Understandably, the most difficult part of bonding with other women in the Sistah Connection is when a member passes away. They call it “getting her wings.”
“We miss them,” Brown said.
But collectively, they are enriched by every presence.
“There are a number of people who have come in and out of our lives, but I’m just glad to be supportive of other people in a group that has strongly supported me,” Brown said.
The Sistah Connection at St. Louis ConnectCare meets every third Thursday of the month, from 10:00-12 NOON. For more information, contact Rosetta Keeton at rxk2630@stlconnectcare.org or call 314-879-6231.
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Box 1:
Breast cancer warning signs include
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- New lump in the breast or armpit.
- Thickening or swelling of part of the breast.
- Irritation or dimpling of breast skin.
- Redness or flaky skin in the nipple area or the breast.
- Pulling in of the nipple or pain in the nipple area.
- Nipple discharge other than breast milk, including blood.
- Any change in the size or the shape of the breast.
- Pain in any area of the breast.
- Some of these warning signs can happen with other conditions that are not cancer and some people have no signs or symptoms at all. If you have any signs that worry you, be sure to see your doctor right away.
Source: Centers for Disease Control and Prevention
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