Four years ago, Charlotte Mukagatsinzi experienced changes that worried her. She fell sick regularly – which was unusual – and was always tired. Her worry turned to absolute fear when she discovered a lump in her breast.
Something was wrong and so she went for tests. Imagine her despair when she was given the unfortunate news that she had breast cancer.
The mother-of-two had just come out of a divorce battle, and now with cancer, “there was no room to breathe.”
Once again, Mukagatsinzi had to fight for the chance to raise her two little ones.
She started treatment in 2015, a few months after she was diagnosed. She had a mastectomy and then endured radiotherapy for two years.
“I remember shortly after my treatment, I developed complications with my breathing. At first, I thought I had developed heart complications but when I went for a scan, they discovered that there was water in my lungs,” she says.
After radiotherapy, she stayed home for a while, nursing herself back to health and trying to get back up from the effects of the treatment.
However, this year, she was hit with another devastating blow.
She started feeling sick again, and went back to hospital for more tests. Unfortunately, the cancer had spread to her lungs.
“I was exhausted and I probably would have given up but I was worried about my children,” the 44-year-old says.
Mukagatsinzi is currently undergoing chemotherapy, she lost a lot of weight, her hair is all gone, but she hopes to survive and take care of her children.
Mukagatsinzi is just one of the many women who have battled one of the most invasive cancers in women – breast cancer.
As such, Breast Cancer Initiative East Africa Inc. (BCIEA) was established in 2008 to make a difference by focusing on awareness and prevention of breast cancer, and intervention for people battling the disease.
Mukagatsinzi, a beneficiary of the initiative, appreciates its efforts and says she learnt of the organisation a few months into her first treatment through a campaign that was held in her home area, Gatsibo Kiramuruzi, Eastern Province.
“After they found out that I was sick, they checked in on me daily to see how I was doing. There was a time I was very ill and they visited me at least twice a week, they also helped me financially,” she says.
Mukagatsinzi applauds the counselling services the initiative offers saying that though she feels her chances of survival are slim, she is strong and has a peace of mind.
Breast Cancer Initiative East Africa (BCIEA) Inc. was formed to take the lead in the advancement of breast cancer surveillance and also improve survival rates, targeting the most neglected low in-come communities of East Africa.
The organisation also sought to change and save lives affected by breast cancer.
Phillipa Kibugu-Decuir, the founder and director of the organisation, says that their programme is comprised of seven projects.
One of the projects is the ‘Innovative one smartphone per village’ where a trained village ambassador (breast cancer survivor or volunteer), is given a donated smartphone, equipped with the BCIEA awareness/education mobile application, and a guide written in Kinyarwanda with lifesaving information.
There are 23 trained village ambassadors, including two men. Ambassadors effectively influence Umuganda (community work) and Umugoroba w'ababyeyi (family meetings) as awareness platforms.
Public education through outreach and training workshops is another project, and it includes providing a clinical breast exam.
There is the ‘Creatively Pink Youth Club’ for secondary and college students, which calls on awareness and early detection.
Kibugu also mentions a ‘Wellness House’, a safe space for rural patients travelling for treatment that also serves as a learning and information centre.
“We also have knitted breast prosthesis for women who undergo a mastectomy to help them overcome body image issues and regain confidence after losing breasts. BCIEA has 30 trained women who knit the prosthesis breast.”
Kibugu says there is also a ‘Breast Cancer Survivor Support Group’, that meets monthly to support each other and learn about active life after cancer, and, a ‘Wellness Garden’ — a prevention model for lifestyle/nutrition, cancer risk reduction and income generation for patients, survivors and the community.
Kibugu says she focuses on the fight against breast cancer because it is her story as well. She is a survivor of breast cancer.
“Adding value to one’s life is what keeps me going. It’s more than money, even when the patients don’t get a chance to survive, at least they get to die with dignity because most of them tend to be depressed when they come to us but their attitude changes in the course of time,” she says.
She notes that the biggest challenges faced by patients is the cost associated with treatment and the lack of awareness.
BCIEA plans to address these needs through its Wall of Hope — Crowd Fundraising for Breast Cancer Patients, where people leave a message on the wall and make a donation.
“We are also writing grant proposals, and expanding public education. We want to make breast cancer everybody’s business,” she says.
Survivors share their story
It’s been five years since Mayimuna Kemirembe survived breast cancer. She recalls her journey as a tough one, where she hardly thought of survival.
She also discovered the cancer after getting discomforting pain in one of her breasts.
“At first I didn’t realise what was happening, I thought it was menopause. I had something in my breast that kept going through me like electricity, so I went to a gynaecologist but they told me it was normal and gave me ointment to rub on it. I got comfortable and went on with my life,” she says.
Her oldest daughter pushed her to go for further examination, during which she was diagnosed with the disease. She then went for treatment in Kenya, after which she was declared cancer-free.
“It was a confusing time for me, I saw death coming and it scared me but the doctor gave me hope, and told me that it was not the end since the cancer was in its early stages. I had the chance to beat it,” Kemirembe says.
She recalls meeting Kibugu after her treatment and that as a survivor; the initiative has done a lot for her.
“They provided me with a knitted knocker (artificial breasts); right now I am comfortable even though I lost one of my breasts. We also meet and share our stories and this helps restore hope,” Kemirembe says.
The 50-year-old has since dedicated herself to counselling other patients who are battling cancer.
Victorie Uwakigeri has been fighting cancer for five years; she recalls how BCIEA was right by her side during the course of her treatment, and connecting her to doctors and offering counselling and comforting through the hard times.
“I had my operation in 2014 and I am now doing well, though I am still on treatment because the cancer keeps on shifting. My throat was affected and was operated on but I have hope because I underwent radiotherapy and the doctors are positive that I will beat it, they told me I have 80 per cent chance of surviving,” she says.
She commends Kibugu’s efforts saying that her struggles to fight breast cancer will not be in vain.
“I pray that God blesses her with a healthy life such that she continues helping others as well. To us, she is like a parent, even when she is not in Rwanda, she continues to follow up to see how we are doing, and she makes us feel loved and cared for. We know we have someone who cares and this keeps us strong,” Uwakigeri says.