UWOCASO was born out of the need to share her cancer journey with someone
Need causes many to take action, more so when they see a vacuum. No wonder, it is always said, “Necessity is the mother of all invention.”
In the case of Gertrude Nakigudde, a breast cancer survivor, the dilemma she experienced while undergoing treatment pushed her to do more for patients and caretakers.
“In 2002, I was diagnosed with breast cancer. Apart from the shock of the diagnosis and the pain that comes with the disease, a lot did not seem right. For example, service dissemination was wanting and there was scanty information about what a patient would go through. There was also a shortage of medical staff; only one nurse and one doctor for everybody, and chemotherapy was rushed – only given in five to 10 minutes; never taking into account the effects it has on the patient. In all this, I always asked why things were done that way and asked if change was possible. That earned me the label of a difficult patient, then,” she recounts
Walking through the Uganda Cancer Institute (UCI) compound, it is difficult to not notice the plight of many patients. Caretakers abandon many and their faces tell a story of a deep desire to pass to the next world and leave the pain behind.
Because she had received endless care and support from family, friends and her employer, Nakigudde purposed to fight for those who could not easily get such help.
She was not blind to the many unlucky patients around her. “Some were very sick with advanced cancer, others could not afford treatment because then, everything was paid for. It was then that I promised God that if He healed me, I would do whatever I could to change the situation for cancer patients. He heard my prayer,” she smiles.
Making a promise and fulfilling it are two different things. Digging into the zeal to see the next patient experience better, Nakigudde continually consulted her surgeon who guided and connected her to other survivors. As a team, in 2004, they formed Uganda Women’s Cancer Support Organisation (UWOCASO).
Starting out as a peer group, the organisation has blossomed to start offering counselling to patients and families, which is very important in equipping them with information to overcome the challenges of coping with a traumatising cancer journey.
“We also provide artificial breasts (prosthesis) and special bras to women who have lost breasts to cancer, offer information and awareness about screening, early signs, risk factors and the benefits of early diagnosis and treatment,” Nakigudde shares.
Through the organisation, they also engage and lobby with authorities and decision makers to provide free screening services, subsidised treatment and to treat patients with dignity. Through their services, UWOCASO has helped turn more than 1,000 patients across the country into survivors.
Nonetheless, the fight has had several thorns, the most piercing of them being social stigma, which remains prevalent in society causing many survivors to have a fear of speaking up. “Many are stigmatised at work, at home and in their communities, which makes it difficult to thrive and fight better,” she sighs.
Another challenge is the fact that cancer is not on the list of diseases that donors see as a priority and, therefore, implementation of programmes such as awareness campaigns remains at low scale. “We need to push the message of the need to end stigma among the masses. They need to stop taking cancer as a death sentence and the best way is if they understand that there is increased survival with love from others. Funding will also allow us to provide counselling services to patients and families to help them cope with treatment better.”
Nakigudde’s heart is shattered to pieces at the knowledge of a colleague in the fight against cancer losing their battle. The desire to see many beat the disease is what gives her the zeal to keep giving of herself.
“I derive so much joy in knowing that what started as a peer group of five patients helping each other cope with challenges such as losing a breast, hair and so much more has turned into a non-governmental organisation that gives cancer patients and their families a much needed smile,” she beams.