'Taking care of cancer patients is a painful task'

Joseline Nekesa, a cancer awareness advocate in Uasin Gishu County has been taking care of her sick cousin since November last year.

She recounts the hardship that she has endured to ensure her ailing cousin is comfortable while undergoing chemotherapy at Moi Teaching and Referral Hospital (MTRH) in Eldoret.

When her cousin was hospitalised, doctors recommended that she takes tests to ascertain her ailment.

Unfortunately, the patient had just lost her mother then and the family did not have enough money for the recommended tests, prompting Nekesa to take care of her as they sought funds.

By January, the family had collected enough money to facilitate the tests that indicated Nekesa's cousin had stage 4 cervical cancer. She was required to start medication which included eight sessions of chemotherapy, which has side effects that could render a patient restless, weak and in pain.

Nekesa's cousin was constantly in pain and irritated and would cry for help. "She would cry because of the pain. I used to feel sorry for her and even wished I take away that pain," Nekesa says. "Also the situation at the facility where she was being treated was overwhelming as most patients came with a similar condition, making one feel helpless."

Lack of resources to facilitate medication after a chemotherapy session forced her to run away from the hospital for some time because the pain was too much to bear.

"I remember a time after chemotherapy, she was in so much pain. She kept on telling me that doctors were not helping her but I knew we did not have money. I tried explaining to her that I was reaching out to our family members for support but she did not understand," she says.

"None of the members was responsive and I couldn't stand seeing her in that state. I technically disappeared leaving my patient alone for some days."

At that time, Nekesa was a member of the Solace Kenya Care Givers Group which aims at providing a safe space to connect with others in a similar situation.

One of the members posted on their WhatsApp group about caregiver training that was being facilitated by the Non-Communicable Diseases Alliance of Kenya in Eldoret.

She decided to join others in that training which turned out to be an eye opener and made her understand how to take care of a sick patient, especially one with cancer, better

"After training, I realised I was affected and the patient was the one infected. I felt sorry for myself because I had not handled her the way I should. I went back, asked for forgiveness and continued giving care as I had been trained," she says.

Jared Biwott on the other hand, started his journey in August 2021 after his father fell sick and needed support. He had a persistent cough that was misdiagnosed as Covid before it was discovered that he had stage 4 lung cancer.

"My father started being sickly during the pandemic period. We were told that he had been infected and was put on medication. However, he didn't feel better and by the time the doctors conducted further tests, he was found with advanced-stage lung cancer. It really broke my heart taking care of him as his health deteriorated," he says.

Biwotts father died on April 18 this year after a tough journey that drained him psychologically and financially.

"Giving care is not an easy job. You are affected while taking care of the patient and the feeling is worse if you, unfortunately, lose the patient. Psychological support is very important," he adds.

Despite losing his father, Biwott has devoted himself to reaching out to other cancer patients within Uasin Gishu County and supporting them through providing care.

He notes most patients and their families are not well versed in handling cancer patients and that a huge number of people are not willing to openly talk about the disease.

"The community still has fear when it comes to matters of cancer. While sensitising the public, many people shy away from the topic because they feel it's a subject that should not cross anyone's mind," he says.

For Violet Shunza, a survivor of colon cancer and currently a caregiver, taking care of a cancer patient, especially one who is undergoing chemotherapy and radiotherapy, can be stressful because the patient goes through a series of adverse reactions that can even affect their mental well-being.

"I started treatment in 2017. I would attend a whole week of chemotherapy sessions before going back home and that affected me so much. I could not eat, sit, stand or do anything after the sessions," she says. "The medication also made me feel irritable and I would sometimes not get along with my caregiver. This is normal with cancer patients."

She says that sometimes she felt like her caregivers were not doing what she wanted to be done to make her feel better. After battling colon cancer, Shunza's mother was diagnosed with cancer, forcing her to assume the role of a caregiver.

"I automatically became a caregiver when my mother fell ill. She took care of me when I was in the hospital and it was my duty to be there for her when she needed help," Shunza says.