At 19, Karen Bugingo was diagnosed with Stage 4 Burkitt lymphoma, the fastest growing human tumour. At 25, she is cancer free. She speaks to JACQUELINE MAHUGU about it.
On April 8, 1994, in a quaint house in Kigali Rwanda, a man and his wife were going about their usual business, oblivious of the danger that lay moments away. If they had known of the impending doom, they would probably have drawn out every minute together, held on to each other a little longer.
Because a few hours later, a group of killers would barge into the home and kill them, leaving their children orphaned, a one year-old-girl and a two- year-old boy. They were the apple of their eyes, and in their dying moments, they must have been relieved that they had left the children the previous night at their babysitter’s.
Today, the one-year-old girl is little grown. She is a beautiful lithe girl whose name Bugingo means ‘life’ in Kinyarwanda. And the fierce light that shines in her eyes and her graceful manner exemplifies the name. Being so young when she lost her parents, and raised by her grandmother, she has little recollection of them.
“I am told that my parents were hardworking people. They ran a business together. I wish I had met them,” she says wistfully.
And while the Rwanda genocide might have shaped her life, it is her battle with cancer that has defined it. And when I meet her for the interview, she explains that she is in Nairobi for the launch of her book My Name Is Life. The book is about her battle with cancer.
When she turned 19, she began experiencing excruciating pain in her hip and suddenly started wasting away.
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“For a full year, I survived on pain medication. The doctors had no idea why I was losing weight or experiencing aches.”
When it all became unbearable, they decided to go to India to seek help.
“I travelled to India in 2012 and after some tests, the doctor broke the news that I had Stage 4 lymphoma,” she says.
The news devastated her.
“I was now faced with a struggle that, unlike the after-effects of genocide, is a struggle unfamiliar to many Rwandese. It was a widespread notion that cancer was something no one survived. When I was battling cancer I did not know any person who had survived it. Everything that was happening to me, I learnt about it on Google,” she says.
This, is what prompted her to write the book, to create cancer awareness, and also to be a source of hope to other people struggling with it and other issues.
“I went to a hospital in Bangalore, India where I underwent chemotherapy for a month. I then went to Kigali for the remaining five months,” she says. “It was draining. I developed insomnia in the first stages of the treatment and later on started losing my hair. It was slow and painful but luckily I wasn’t in any pain, just emotionally drained.”
However, despite being diagnosed with severe lymphoma, she decided to keep her head up, even if sometimes she felt like the world had not stopped moving just because she was sick.
“By the time I finished treatment, my peers had already finished university, so facing the fact that life had left me behind was tough for me,” she says.
Eventually, the prognosis moved from grim, to hopeful. “I realised that I was going to get through it when I started feeling better, eating and walking. I had been in a wheelchair because the cancer had spread to my hip, but all that started getting better. I was declared cancer-free in July 2013.”
She was blogging about her path to recovery when her uncle suggested that she publishes a book about it.
“I hope that anyone struggling with cancer will read the book and know that they can get through it. And that amidst the storm, they should look for the rainbows.”
Burkitt Lymphoma is rare outside Africa
It mostly affects children who have malaria
This cancer is also very common among people living with HIV
The African variety often begins as a tumour in the jaw or other facial bones before spreading
Intensive chemotherapy is a common treatment option