My name is life

Karen Bugingo 25, is one source of inspiration to anyone in a seemingly hopeless situation. Born and raised in Kigali Rwanda, Bugingo shares a painful story battling stage four cancer.

Currently a final year student at Mount Kenya University Kigali pursuing a degree in journalism and communication, both her parents passed away when she was little. The only immediate family left is made up of her elder brother, grandmother and aunt.

How it all started
Healthy, beautiful and soft spoken, Bugingo narrates how it all started back in 2012 before she was diagnosed with cancer. At 19, just before graduation from year 12, what started as a pain in her right hip bone turned into a life-changing experience.

“Because of the pain, I started limping and before long, I could not walk. I thought that my bones were just dislocated or had a problem. I started looking for treatment and eventually dropped out of school,” she narrates. In search of a cure, Bugingo approached doctors in Kigali, and later Nairobi hospital in Kenya and back to Kigali, but with no clear diagnosis.

“Slowly, each doctor went on detecting something. For a whole year, I was in this state of suspense and pain, using crutches to move until my family came up with the idea of taking me to India. With my aunt as my caregiver I flew to Narayana hospital in Bommasandra, Bangalore in India,” she shares.

In November 2012, Bugingo was diagnosed with stage four cancer in her right hip.

Growing pains
Apart from the relentless pain in her hip, she was losing an abnormal amount of weight - about five kilogrammes a week. She was also unable to eat.

“Ironically, when I learnt that I had cancer, my reaction to the news was relief. It was not the best news but at least I knew what was happening to me. It had been a whole year of looking for the cause of this despicable pain with no clear diagnosis. But again, it was hard because I thought my family was going to be blown away by the news,” Bugingo shares.

The treatment
In India, after diagnosis, she was put on chemotherapy –one of the treatments for cancer, administered through an intravenous line. “I had to go to hospital every day for a week, get chemotherapy, skip another week and go back for a week. Each dose took about five hours. I did this for six months,” Bugingo shares.

Luckily, her family supported her financially to get the necessary treatment but also stayed strong for her, emotionally.

As expected, some of the side effects of chemotherapy were also present in her case. She suffered insomnia (inability to sleep), hair loss, darkening of the skin and weight loss.

“As a young girl, seeing your body transform in this weird way was scary and unbelievable! Although it was a hard time, I gradually begun feeling better. There was no medical explanation for this kind of response because the cancer had spread to my left hip and esophagus. It was all a miracle and I believe the cancer was caught just in time before it took my life and I can say, I am one of the few who make it through stage four cancer,” Bugingo notes with a sigh.

After two months in India, she was flown back to Kigali with her chemo medication to continue chemotherapy and complete the six months after which, she returned to India to see her doctor and run more tests.

“Even before he did the tests, he could see the medication had worked! I had gained more weight, I was feeling better, my hair had grown back and I was looking better. By the time I received my last cycle of chemotherapy, I was already walking on my own. So when they brought the results, I was told that the chemotherapy had been successful! In July 2014, I was declared cancer free,” she notes triumphantly.

A taste of success
“It was a very sensitive time for my family. To me, it was exciting. I felt ready to get my life back. It was my time to be normal. However, when I got back to Kigali, I had to keep running tests with my doctor. I underwent a three-month precaution period, where I had to see my doctor every month to run tests. In 2014, I was ready to join the real world,” she notes.
After this, Bugingo was able to get a job and apply for school again.

Battling the emotions
Battles leave scars in their aftermath. When she thought the worst had passed, something seemed out of place, emotionally.
“I was experiencing very high levels of anxiety. I just had a fear of something I did not know. I would wake up in the middle of the night breathless. It was not a fear of cancer, but a fear of being sick again. The doctors had said other things might come up – as side effects from the chemo—and the thought was overpowering,” she recalls. That is when she decided to seek counselling to overcome these emotions.

Coming out a better person
Bugingo’s experience has transformed her.
“Fighting cancer and coming out victorious has shaped me in a way I perhaps would never have been. I feel stronger and dream bigger. My life had previously been sheltered but I was exposed and I am now aware of my surroundings. The experience has been an eye-opener,” she says.

Finding her voice
It is close to five years since Bugingo was declared cancer free. As part of her healing process, she started writing a book about her experience.
The novel entitled ‘My name is Life’ inspired by her life and name (Bugingo means life in Kinyarwanda) was recently launched in Kampala as part of her East African tour not only to share her story but to bring encouragement to people fighting cancer and relatives of cancer victims.