“In February 2014, I was diagnosed with Non Invasive Ductal Carcinoma Early Stage and I felt like my life had come to a standstill. I didn’t know anything about breast cancer apart from what I saw on the television and in movies. I felt alone and spent almost the whole year in hospital,” says Josephine Sitawa popularly known as Josita.
With her life thrown into disarray, Josita was at a crossroads and didn’t want to reveal her status to anyone, especially her mother whom she knew would be greatly affected. She booked a surgery that was done two days later. “Life through chemo wasn’t easy. There were times I had complete lack of appetite, felt tired for no reason, could not sleep and experienced a lot of nausea. There is also a time that my veins collapsed and the medics had to insert a chemo port,” she reveals. A port is a small disc made of plastic or metal that sits just under the skin. A catheter connects the port to a large vein. Chemotherapy medicines are given through a special needle that fits right into the port.
Hour of need
“During this time, it gave me time to think about my life, what I needed to stop or reduce doing and taking for granted things I should not. I also felt helpless, lacked appetite, had nausea and my skin turned black. I also came to realise that cancer was affecting more people than I could imagine. While at it, I would sink into depression until a colleague referred me to Faraja Cancer Care Support where I was counselled and made many friends who helped me through my journey,” she says.
Luckily for the IT expert who works for the government in the Immigration department, her colleagues stood by her in the hour of need. “People at the office were shocked at first, but they stood by me through financial assistance, prayers and moral support. One of my bosses even encouraged me to reach to more people and talk about breast cancer and has been pivotal in starting Breast Cancer Kenya (BCK),” she says.
After six cycles of chemotherapy and 30 radiotherapy sessions, the mother of three boys started thinking of starting a platform where people could share their stories.
“When I checked online, I could not find Kenyan experiences and it was difficult to find things such as local diets. So some friends and I thought of coming together to share our experiences and that is how we started Breast Cancer Kenya in 2015. It was registered as a community-based organisation,” she says. The organisation is a member of Kenya Network of Cancer Organisations (Kenco) and also works in partnership with The American Cancer Society.
While undergoing treatment, Josita noticed many people lacked information on how to manage cancer and life after cancer. Normally, the wound takes two to three weeks to heal and the dressing needs to be changed preferably after a day or two.
“We help with patient navigation. This includes connecting patients with healthcare providers so that that they get the information they need (working with Kenyatta National Hospital), sometimes it can be about medication reactions, some patients are just frustrated and want to talk to someone, especially after treatment when the body immune system is low and they want pacifiers,” she says.
Despite the National Hospital Insurance Fund (NHIF) medical cover helping out in some cases, treatment of cancer is an expensive affair. The tests starting from Core Biopsy, CT Scans, MRI Scans and Blood tests can run to over Sh200,000 with the actual surgery costing from Sh250,000 upwards at Kenyatta National Hospital. The hospital also offers radiotherapy sessions for breast cancer patients at Sh500 to Sh1,000 per session. To access biopsy and mammogram services at Aga Khan Hospital, one has to part with Sh7,000 and the treatment cost is Sh50,000 each week. A mammogram at the Nairobi Hospital goes for Sh8,000.
Cycle of treatment
“After surgery and the chemo, medication is needed, depending on the type of cancer a patient has. One of the things I noticed is that some patients don’t have enough information on what to do, while others cannot afford even a single cycle of treatment. Some drugs such as Herceptin go for Sh200,000 and a patient needs up to 18 doses and as BCK, we plug in where possible and help the patients get the right medication,” Josita says. Without the NHIF cover, one is forced to look for an alternative, with private insurance companies providing covers. The average limit ranges from Sh500,000 to ShImillion under corporate and individual schemes.
While many people are still stuck at the thought that breast cancer is a “woman disease”, medical reports have it that men should also be worried. This is because men have lesser chances of surviving breast cancer, due to several factors including less tissue in the breast region, hence making it spread faster and because the disease is mostly diagnosed when it is too late. According to the Ministry of Health, about one per cent of breast cancer cases affect men, with 41,000 new cases of cancer being reported annually. When a family member is diagnosed with cancer, finding a caregiver who will walk with you the whole journey is hard. Joyce Apiyo dropped out of college when her mother was diagnosed with breast cancer two years ago. It took her more than a year to accept the reality. “Being a caregiver and especially a breast cancer patient caregiver is a 24-hour, seven days a week job. One is on call at all times. What most people don’t understand is that a caregiver is the one who suffers most, even more than a patient because most often they helplessly watch their loved ones go through a particular condition and at times have little to offer,” says Josita.
Arthur Muriuki, a psychiatrist based in Nairobi, says taking care of a patient also requires adequate preparation. “As a caregiver, it is paramount that your mental health is in check, so that you are able to give the patient 100 per cent attention,” he advises.
Sexual activities are also limited at first, after surgery. “Out of pity, some men will look for ways not to hurt their spouses and some might resort to watching porn or even having a mpango wa kando. They might also devise ways of not getting their feeling aroused and might even keep a distance,” says the psychiatrist.