A mechanic's cancer story

At the cancer hostel in Kyebando Nsooba zone, a Kampala suburb, I find this short and stout man sitting on a chair at the veranda.
He forces a smile to welcome me. His legs spread apart, his shorts and checked-short sleeved shirt tightly fitting and the first three buttons from the collar unbuttoned.
After explaining my motive, he quickly declines to have photographs taken and asks if I have a camera or if I came with a photographer. “I do not want my face to appear in the newspaper. Do not take any of my pictures if you want us to talk,” he says with a hoarse but authoritative voice.
I pull a chair on the veranda and sit at the same table where he has placed his one-litre water bottle. I notice his thighs are swollen and pale. His chin and cheeks have lost shape and he has black, irregular spots all over his skin.

How he discovered the cancer
While working at a motor vehicle repair and maintenance shop in Fort Portal, Ssebugwawo realised he had dark spots on his hands and all of a sudden, his whole body was swollen.
Ssebugwawo says, “When I told colleagues at the workplace, they advised me to go for a medical checkup so that I could be sure of what was wrong with me. I went to a clinic and the doctor told me I had syphilis because my private parts were swollen.”
He adds, “I did not agree to the results so I then went to Kagote Health Centre III where they suspected I had a cancer but were not sure of which type so they referred me to Uganda Cancer Institute.”

Going to the cancer institute
Friends raised some money for his transport to come to Kampala and do the tests that were required. “My situation at the time had become very bad because I could not move on my own. I had walking sticks and my body continued to swell. I came to the institute in March this year but without a caretaker because I have no close relatives,” he explains.
Ssebugwawo is the only child of his mother and his father passed on. He also has no links with his only child.
“I am my mother’s only child and my father died. My girlfriend and I separated two years after she had given birth to our son and she got married to another man. That is why I do not have a caretaker.

However, my mother comes from Fort Portal once in a while to check on me,” says Ssebugwawo in a sad tone.
On arrival at the cancer ward, Ssebugwawo slept on the veranda for 10 days before seeing the doctor because the wards were full.
“I finally saw the doctor but I was in intense pain at the time. I could not walk on my own and it was hard for me to get sleep because my whole body was swollen and so painful.
With the help of other patients’ caretakers who felt pity for me, I saw the doctor who advised me on what tests I had to do. After a few days, I was diagnosed with skin cancer at stage three.”

Starting cancer treatment
Ssebugwawo was able to get relief on the first day of chemotherapy because he slept comfortably for the first time since arriving at the institute.
“I was immediately started on chemotherapy and got relief right on the first day. As part of the treatment, I was prescribed six cycles of chemotherapy, morphine, some painkillers and some tablets whose name I do not know,” he recalls.
He says that unlike the other cancer patients, he was not badly affected
by the chemotherapy. His hair remained intact and his nails the same colour. The treatment is, however, interrupted by a liquid that fills his lungs and stomach after every three weeks.

“I cannot undergo chemotherapy before my stomach and lungs are tapped,” says Ssebugwawo. The doctor drains three litres of water from the stomach and two from my lungs. This water keeps on refilling. I have undergone the tapping three times and I believe even at my next visit, I will be taken through the same process.”
He keeps caressing his chest and stomach through the unbuttoned space on his shirt using the left hand and takes a small sip of water during the interview. His right hand which he had rested on the table at the beginning of the interview has also started swelling from the elbow.

“When the water accumulates, my feeding is interrupted because my stomach gets full quickly. Although I may feel hungry. If I force myself to eat more, my stomach feels like it is going to burst. When I feel thirsty, it takes me an hour to finish a half litre cup of water because I must take it in small sips. When I try to take gulps the way I see other people do, my lungs and stomach cannot hold it. I am unable to breathe and the stomach swells even more,” he says.
Grace Akumu, the guardian at the cancer hostel took Ssebuggwawo in at the facility where he is housed with other cancer patients. “Since I have no caretaker, Aunt Grace takes care of me. Whenever we have appointments at the centre, she finds a way of transporting us but sometimes she does not have any money so we walk,” he narrates.

The lack of money can be painful, as Ssebugwawo discovered. “Once I had to walk in order to make it to my appointment. Midway, I got tired because water had filled my lungs and I could not breathe. I sat down because my heart was beating fast. I did not have a phone to call for help and people just walked past me.”
Although he has completed his third cycle of chemotherapy, Ssebugwawo doubts that he will be well by his sixth prescribed cycle.
“I wish there was a place in my village where I can get treatment because then I would get someone to care for me, probably my mother,” he says.

What is chemotherapy?
Chemotherapy is a cancer treatment using drugs that travel
through the blood stream to reach cancer cells wherever they are
in the body. It is given through intravenous injections which are sometimes combined with pills. The drugs are given in cycles depending on the type and level of the cancer and are a combination of two to five synergetic drugs that can substitute each other.