Marie Goreth Uwimana was diagnosed with Breast cancer in April 2021. In the throes of her shock, malaise from a succession of treatments and hardly feeling comfortable in her body again, she also has to put up with what she refers to as ‘insensitive comments and questions’ from her immediate surroundings.
One of the most difficult aspects of breast cancer, according to Uwimana, is to live with it or its after-effects, such as when someone has had a mastectomy.
"I was recently asked by someone, 'numvise ngo baguciye amabere, ese nibyo?' (I heard your breasts were cut, is it true?) "I didn't know what to say, so we were both stuck in an awkward quiet," she explained.
This, she continued, was especially difficult because in Rwandan culture, not having breasts has a negative connotation. "To be a woman without breasts is literally an insult or shame," she added.
According to Paul Nsengumuremyi, who was diagnosed with breast cancer in 2010 after having had it at a young age, breast cancer patients and survivors must also deal with several prejudices that exist around the disease.
"Because many are still unaware that men may also get breast cancer," he explained, "many people regard male breast cancer patients as abnormal or as if they are faking." "In rare situations, even a doctor is surprised to see you coming for a breast cancer consultation or treatment," he added.
"I may joke about it and even say that I'm not the only one since men have breasts as well." But, even though I try to be positive and cheerful, I sometimes feel like I'm the only one," he remarked.
Other breast cancer survivors and patients raised their voices in sympathy with Uwimana and Nsengumuremyi's stories.
This was during a meeting on April 2 at the Pink House, run by the Breast Cancer Initiative East Africa (BCIEA). It was their first meeting since January 2020, just before the COVID-19 pandemic outbreak in Rwanda, where they used to meet regularly.
The Pink house meetings serve as emotional support between the patients and survivors. It is a space where they share their testimonies and treatment experiences. The majority assert it is the only place where they feel truly understood or can be themselves.
Even though knitted knockers, or artificial breasts, are more than effective in assisting us in dealing with our unprepared society, we still have a very long way to go, noted one survivor.
Philippa Kibugu-Decuir, founder and president of BCIEA, urged them to remember the role of survivors in eliminating the stereotypes. She is a survivor herself and has made particularly valuable contributions since 2007 when the movement first started.
"It's up to us to keep living joyfully and fully so that others understand that this is just a sickness that doesn't make us strange or less human," she said.
The awareness needs to be done primarily by us back in our communities before the government, doctors and the media can jump in, she emphasised.