18 June 2018

Uganda: Home Giving Hope to Cancer Patients

Kiota Kona, located in Kawempe Mbogo Zone, Kampala is a patient relief centre for cancer victims while they undergo treatment. The home, with a 47-bed capacity was started in 2016 to cater for women with cancer living in far areas of the country and has in just two years helped more than 105 patients.

The patients are kept at the centre throughout the time they are receiving treatment because it is usually hard for most people to find food and shelter whenever they come for treatment at the Uganda Cancer Institute (UCI).

Veronica Nakato, a nurse at the centre, says the referral system used here is in line with that of the Ministry of Health and UCI and only take in patients who do not have a relative around Kampala and cannot stay anywhere else while receiving treatment.

"The patients usually come with nothing and we take them in. Some come with their caretakers while others come without. The longest they stay here is usually about six weeks and when they complete their cycle, we encourage them to go back home and return on their appointment dates," she says.

At the centre, the patients and the caretakers are transported to UCI and are given a guide. They also get psychological support since most of them are depressed while others are facing mental health related challenges.

Cost

"We also teach them backyard gardening, knitting, weaving and other hands-on skills which help to sustain them when they go back home. We take them to see other cancer survivors which acts as motivation to keep fighting and get better," she says.

The challenge however is that they do not have a car that transports the patients to the hospital. They usually have to hire one. All costs counted, Nakato says they spend Shs6,000 on each patient every day which totals up to Shs8.5m a month. Some organisations such as the American Cancer Society, Red Cross, Malachi organisation partner with the home for funding.

"As the patient's treatment plan winds up, we call their relatives to send them transport back home. Some patients however get stuck here because the relatives do not send the money," Nakato says.

Ruth Amoding

Ruth Amoding, (65) a resident of Katakwi District suffers from cancer in the eye. The mother of six first came to Mulago National Referral Hospital on April 13, 2017 but was admitted at the optical ward because she had a painful teary eye. "My left eye was swollen and the doctor said the lens had broken. It had an infection and was operated on twice. He asked me if I was ready to have the eye removed. It was very painful but I thought I would get relief from the pain," she recalls.

After the eye was removed in August 2018, the doctors advised Amoding to do a biopsy which later confirmed that she had developed stage four cancer in the eye socket. She was then transferred to the Uganda Cancer Institute where she was slated to start her cancer treatment.

While at the optical ward, her daughter-in-law acted as her care taker and when they were transferred to UCI, they had to sleep together on the veranda.

"I had to spend three days while getting treatment but would end up staying longer. It was hard even getting to see the doctor. Also finding transport to go back home was difficult. My daughter-in-law had agreed to take care of me but she had left her family behind. When we finally got some money to go back home, the next time I was coming back, I told her to stay behind," Amoding says.

Alone at the ward, things were even harder for Amoding. She could not find what to eat. The doctors also found out that she was anaemic so she could not receive her second cycle of the treatment. She had to be somewhere, be fed well for her blood level to improve then get her cycle.

"The doctors after seeing that I had no caretaker, nowhere to sleep and elderly, referred me to Kiota Kona hostel. I was welcomed, had a bed to sleep and would get three meals a day," she says.

By the time she returned to UCI for her chemotherapy, she had enough blood, got her treatment and went home. Her next appointment was in March this year but her blood count was low again. She still went to Kiota Kona and got her treatment in April.

Amoding says, "I had to go back home in May this year because this place is usually full and I have to give space for other patients but I did not have money to take me home. I asked the administrators here to let me stay here until I get my last dose of the treatment then go home."

"Even when I have no caretaker and no relative visits, I am happy. The people here treat me so well," she says.

Gertrude Tumwiine

For seven years, Gertrude Tumwiine (27) did not know she had cancer until she was diagnosed last year in August. The resident of Tororo came with her mother after a referral from Tororo Main Hospital. She first developed black spots all over her body and with time, they became itchy. Because she kept scratching them, they developed into painful lesions that later spread to the whole body.

She says, "I would go to hospital while in Tororo but the doctors only gave me medication that would soothe the itching but the lesions never got better. They formed wounds because the scratching did not stop."

She was later given a referral letter to the Uganda Cancer Institute where she had to get proper diagnosis for her illness. After a biopsy test, she was diagnosed with skin cancer. Her mother, who sold second hand clothes in one of the village markets in Tororo at the time did not have enough money for her daughter to get treatment. She would beg for money from her family and other well wishers.

They stayed at UCI for a month with her mother being her caretaker but her younger siblings did not have anyone to take care of them since their father had died. She would not come with her at the second visit and like other people, finding a sleeping place and food were a challenge. She was also referred to Kiota Kona hostel.

"I am HIV positive and on ARVs, my blood count is always low and therefore do not get the chemotherapy in time. I have to wait until my CD4 count is normal. This is the reason I was brought here. After the second cycle, I got relief from the itching and blistering but I needed three more doses," Tumwiine says.

The problem is however that her blood count is usually low and during such a time, she cannot get the treatment. She has stayed at Kiota Kona for about two months but she is lucky that her mother and siblings usually come to visit her.

While she waits to get her last treatment, she has learnt knitting, weaving and farming skills at the centre. She makes doormats and other crafts which she intends to sell, get money for her own sustainability when she gets back home.

Statistics

Cancer continues to pause a major threat to the public health at 0.3 per cent prevalence rate according to statistics provided by the ministry of health.

Among women, the most diagnosed are cancer of the cervix at 48/100,000, breast cancer at 31/100,000, Kaposi Sarcoma 16/100,000, Oesophogus cancer 13.5/100,000, liver cancer 9.6/100,000, Thyroid cancer 2.9/100,000 and ovary 6.5 /100,000.

Statistics provided by Uganda cancer Institute also indicate among the men, prostate cancer stands at 58/100,000 Kaposis Sarcoma 29/100,000 oesophogus 24/100,000 lymphoma 9,100,000 and Thyroid 1.1/100,000.

The trend is however worsened by the country's ill equipped capacity to deal with complex and expensive cancer treatments with the cancer specialist to patient ratio standing at 1:10,000. This has led to a lower cancer survival rate in the country standing at 20 per cent.

Statistics from Uganda Cancer Institute (UCI) indicate that the number of new cancer cases registered annually has shot up by 500, rising from 4,000 in 2016 to 4,500 in 2017. The cancer institute currently treats about 48,500 patients, with 75 per cent of them receiving radiotherapy treatment.

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