5 March 2018

Uganda: Cancer Survivor Starts Firm to Ease Treatment

Ms Judith Sheenah Kyamutetera feels like her old self having battled cancer for the last eight months. She recently became the country representative for Magnus Medi-Tourism in Uganda and is helping patients to access treatment easily.

After years of training political leaders, refugees, parliamentarians and students, Ms Kyamutetera's life changed in May 2016 when she returned to hospital only to be told that she had breast cancer. She had previously felt a lump in her right breast while breastfeeding her daughter but thought it was a result of breast milk.

"I would come in the morning, work up to evening and go home. So I thought because I take long to breastfeed, the milk is stuck there. But when I would breastfeed and the milk is finished, the mark would not go away and I was bothered for three days," she says.

One evening after picking her children from school, Ms Kyamutetera visited a gynaecologist who said it could be an infection caused by breastfeeding. For a week, Ms Kyamutetera and her daughter, were on treatment for an infection.

A week later, her aunt died under suspicion that she had succumbed to liver cancer. While she made it for burial, a cousin working with Hospice Uganda advised her to go for further checkup. Days later, Ms Kyamutetera nervously sat at Nsambya hospital in Kampala waiting for results from her tests.

"As I was waiting for my results, it occurred to me that what if they break the news that I am sick, what will I do? I said, I would deal with it," she recalls. That thought persisted as she waited with her husband. Minutes later, doctors revealed the inconclusive results, indicating her lump was either cancerous or non-cancerous.

On a Sunday evening, the lump was removed for further tests. "It was very painful. I had never felt that pain because all my children are through C-section," she recounts.

A week later her thoughts became a reality. The second tests revealed to her husband first, indicated that her breast cancer had advanced to stage three. The doctors called it the rare but "good" cancer.

"When he came to break the news, he said we were in this together. So you have someone who is supportive but you do not know to what extent they can be supportive," she says. She adds: "He was willing to sell whatever we had built for me to get proper treatment."

The couple knew it needed to move fast. Cancer was something she could never fight alone. A day later, as she was preparing for treatment in Kenyan capital, Nairobi, she decided she could use her savings for National Social Security Fund (NSSF) to kick-start her treatment. But she needed a letter from a non-governmental organisation she had worked for four years ago.

At NSSF, a doctor confirmed her condition. Within less than a week, she received a message that the fund had deposited money on her account.

"It was not a lot but at the time it came through, it meant the world to me because I was thinking I would have delayed fundraising for money and the disease would have grown and by the time of treatment I would be dead," she says about the Shs12m received from NSSF.

Pursuing treatment

The 37-year-old mother of three boys and a girl, aggressively pursued treatment that included full mastectomy and 23 doses of chemotherapy that ended in August last year. This was followed by radiotherapy and a test in India that determined whether there was progress.

"It was not easy," says Ms Kyamutetera. "It was emotional and affected every side of my life, financially, psychologically because for the children, we had to move them to a cheaper school to reduce on fees. I was home sleeping and I could not work, so he had to work for everything," she narrates.

The domestic budget skyrocketed because of the treatment. She had to eat special food that came at a cost. The family was living in a semi-complete house so construction came to a halt. She had resigned her formal job to do consultancy but could not anymore.

Her promise to breastfeed her only daughter till the age of three was unfulfilled at one and a half years. The bond between her and her baby weakened due to constant travelling. Death crossed her mind as she counted only three more years of life.

"I would sit in the sitting room and imagine the coffin is going to be there, my friends will be seated there, my children too but I fought so hard to get it off my mind," she recalls.

So far, Ms Kyamutetera's treatment has cost about Shs200m. The first chemotherapy dose taken on a three weekly basis cost about Shs7m. The hugest cost incurred was on radiotherapy done in India.

"The NSSF money helped in the beginning, friends fundraised but for an average person, if the government does not come in, then you can hardly afford it," she says.

Declared cancer-free

She is on treatment to avoid reoccurrence of the disease although she has been declared cancer-free.

Today, she has turned to Magnus MediTourism, a company she started with savings from a fundraiser to treat cancer. This was a company she had interfaced with while searching for information on how to access treatment easily in India.

In July 2017, she launched it to create awareness about non-comnicable diseases with a special interest in cancer and connecting those who want proper treatment in Indian hospitals and a few Ugandan hospitals. The company now provides quotations, guides patients on the best options and ensures proper care while abroad.

Currently, it is a social enterprise without profit as she looks at the minimum cost she can incur to meet daily operations. She has worked with six clients so far and has resumed consultancy in peace and conflict resolution.

Touching lives

She believes money from NSSF friends with benefits project could push her to touch more lives. Stronger than ever before, Ms Kyamutetera now looks forward to motivating cancer survivors to be vocal about a disease many describe as a "beast" and get government to provide more funds for its treatment.

"Cancer is very expensive but the best way is to test and treat it. I do not think there is anything more expensive than death. If you can, get treatment and do not die," she concludes.

To vote for Alice Arinaitwe in the NSSF Friends with Benefits competition, dial *254# or visit www.nssfug.org/fwb

Why you should vote her

Funding. She believes money from NSSF friends with benefits project could push her to touch more lives. Stronger than ever before, Ms Kyamutetera now looks forward to motivating cancer survivors to be vocal about a disease many describe as a "beast" and get government to provide more funds for its treatment.

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