Breast cancer and knitted knockers, a survivor experience
Thursday, April 07, 2022
Members of Breast Cancer Initiative East Africa (BCIEA) pose for a group photo in the event on April 6. / Courtesy

Charlotte Haston in her thirties is a mother and a midwife by profession. It's been eight years since she found out she had breast cancer, which she described as an unexpected life-changing diagnosis.

"It was a routine workday when one woman walked in demanding a full body checkup, including breasts," she recalled from her time as a midwife at King Faisal Hospital in 2014.

The encounter with the woman sparked curiosity about her own body.

"I wondered why I had not checked myself before and decided to do so once I got home.”

Knitted knockers, or breast prosthetics. Photo: Courtesy. When she checked herself later that evening, she discovered a little bump in one of her breasts, prompting her to consult a doctor.

"After undergoing several medical tests, the doctors informed me that I had cancer," she said, adding that "I couldn't believe nor accept it. I was terrified, hopeless, and felt like dying.”

After undergoing various therapies, Haston was required to undergo a mastectomy, a surgical operation to remove a breast.

"I lost my breast, hair, and nails. I felt disfigured, very miserable, and nothing, not even prayer, could bring me relief."

According to Haston, making the acquaintance of Philippa Kibugu-Decuir, founder and president of Breast Cancer Initiative East Africa (BCIEA) made life bearable. "Not only did it relieve me from depression and shame by introducing me to knitted knockers, but she also introduced me to a group of people with the same condition yet with very different testimonies."

Breast prostheses, or knitted knockers, are artificial breasts worn by women who have had a mastectomy. They are soft, congenial handcrafted breast forms, made by volunteers.

Invented by Barbara Demorest, an American breast cancer survivor, and advocate, it is now widely known and used in Rwanda, primarily by BCIEA. Kibugu-Decuir’s BCIEA brings together volunteers including survivors themselves to learn and do these breasts replacements.

"I recall one woman I met in 2007, who was really sick and was, unfortunately, a victim of all the stigma that existed at the time around breast cancer and inadequate medical advancement," she added, "her doctor had removed one of her breasts, leaving the sick one."

"So I attempted to persuade her to accept removing the diseased as well because keeping it meant risking death.” 'Philippa, I will die eventually, but I cannot die without a breast,” she told Kibugu-Decuir.

"This shows how deep the stigma run, the idea that one is less of a woman if they don’t have breasts. There are also people who are subjected to body shaming or who are negatively self-conscious about their appearance. Knitted knockers provide comfort to survivors who desire them," she explained.

Kibugu-Decuir is also set to release a book titled "Dare to Hope" next month, which she asserts will speak about the struggle of embracing oneself after breast cancer, educate and raise awareness about the disease, and emphasize the role of young people in ensuring a hopeful and inclusive community for patients and survivors.