Fighting for better presence
It is the breast cancer awareness month and it is true to say that many of us have lost a relative, friend or colleague to the disease. Years back, I was in hospital as my aunt lost a breast to an unknown ailment and later lose her life to the same. It was extremely painful, but we were told that there was nothing that could have been done. I now know that she died of breast cancer, which many people, such as Mrs Rebecca Mayengo, have had a chance to beat.
“I was diagnosed with breast cancer in 2004 and by God’s Grace I survived, and I am still okay, 16 years later,” she says. The diagnosis and treatment was done abroad and it was four-and-a-half- years after her treatment that she joined Uganda Women’s Cancer Support organisation (UWOCASO) as an advocate.
“I returned home in 2007 and despite being declared cancer free, one must have regular check-ups. It was during one of those follow up treatment sessions that the doctor asked me if I had heard of UWOCASO. When I told him I had not, he gave me their number,” she shares about the start.
On reaching out, Mrs Mayengo was greeted by Mrs Specioza Kabwegyere who introduced her to the organisation, which was formed by women survivors, most of whom had previously been
diagnosed with breast cancer. She came to learn that the group aims to give cancer patients hope because many are fearful of the future and are isolated. “While majority of the members are still breast cancer survivors, we also take care of survivors of other types of cancer. We also create awareness in the general population which helps in the fight against stigma,” she says.
For the next six terms, after Mrs Kabwegyere tenure as chairperson, Mrs Mayengo took over in 2009, after being vice chairperson for two terms. “Owing to COVID-19, we were unable to hold elections in 2020.”
While some achievements are individual, as a chairperson, UWOCASO’s milestones are definitely hers as well and she shares some of these:
It has been rewarding to counsel survivors and patients. “As such, more women have joined us and no longer look at cancer as a curse. They have also understood that early detection is key in winning the fight against cancer,” she shares.
Mrs Mayengo has also joined several other organisations with the sole purpose of advocating for the fight against cancer. “I am a founding member of Uganda Cancer Society (UCS), a society created because we saw the need for a body that brings together all cancer groups in Uganda.” She has been on the board of directors at UCS twice and is a
member of Uganda Non-communicable Disease Alliance (UNDA).
UWOCASO also became a member of Union of International Cancer Control in 2008 hence bettering its visibility in the fight. “It also helps in lobbying for funds and policies in cancer control. As such, Ugandan voices are better heard.”
As a member of Women Empowerment Cancer Network (WECAN), UWOCASO, in 2013, has also been part of the several conferences organised around the continent. “As a member of the body, we were funded to carry out research on knowledge and perceptions of cancer among Ugandans which revealed a lot of information that has enabled us in our work such as knowing how to help people and which information gaps need bridging.”
UWOCASO was also part of the drive to increase cervical cancer vaccine awareness because while the first uptake of the cervical cancer vaccination was good, the second phase was not good. “There are three doses to this vaccine but owing to misconceptions such as the vaccine being a danger to female fertility, many girls were not taken for the second dose. As such, we were funded by the American Cancer Society in 2018 to increase awareness of the vaccine,” she shares.
The organisation has also been able to release two
volumes of an annual magazine that empowers, educates and encourages survivors, patients, caretakers and the public. “We hope to continue publishing the magazine despite the hiccups owing to COVID-19,” she says
Despite all the triumphs, several hiccups make this fighter cringe. “I have been weighed down because very many people are dying of cancer because they report late for screening. For example, several women are dying of cervical cancer because it takes long to manifest and they usually think it is an STD only to get to hospital when it is in its advanced stages,” Mrs Mayengo says.
She also says cancer treatment in Uganda is still costly and little is given from the government. “The drugs, although free, usually run out forcing people to dig into their pockets yet they are costly,” she says with visible ache.
Their diet is also wanting yet nutrition plays are major role in recovery. “With the thought of how much they need for treatment, many opt for the cheaper foods such as deep-fried chapatti which is not nutritious and actually dangerous. It is disheartening that the institute is where healthy nutrition practices such as eating fruits is supposed to be practiced but none are enforced,” she winces.
Overall, Mrs Mayengo says it continues to be a rewarding journey because while the diagnosis was disturbing and disheartening, she got an opportunity to represent the organisation. “It has opened my mind and enabled me to give back to the community. I also learned to appreciate life each day and not give thought to the negative.”