My fear was being diagnosed late, cervical cancer survivor says

Jacinta Makena was 32 years old when she was diagnosed with cervical cancer, exactly 14 years after she lost her mother to the disease.

She was 18 when her mother died and she found the loss unbearable. But she is grateful that medics at a Meru-based mission hospital, where the mother was admitted a week before her death, revealed to her what she had been ailing from in the previous three years.

“We had taken her to several hospitals but her problem was discovered at the facility in Igoji. The medics told me she had cervical cancer, which was at an advanced stage, and that she would not live for long,” she recalls.

With no remedy and taking only painkillers, the family resolved to take her to Chuka County Referral Hospital in Tharaka Nithi. She died three days after her admission in March 2001.

“I spent most of the time taking care of her because she was so weak and could not do anything by herself. The disease had within a short time damaged some of her organs and made her lose a lot of weight,” she says.

Before her mother died, she had revealed to her that their grandmother had exhibited similar symptoms and was paralysed before she died, suggesting that she too could have succumbed to cancer.

This weighed her down emotionally and made her suspect that she could suffer just like her mother, but as time went by the fear started fading.

But in early April 2015, while attending a Sunday church service, an appeal for members of the congregation to consider a free cancer screening camp being offered at Chogoria Mission Hospital reminded her of the excruciating pain her mother went through and prompted her to seize the opportunity.

“I went with three friends and we found long queues but were later attended to. But we were told that a detailed test would be carried out…,” Ms Makena says.

They underwent a Pap smear and Visual Inspection with Acetic Acid (VIA) screening and were told to pick up their results after a few days.

When they returned to the camp, medics kept asking them to wait, making them suspect “all was not well”, but they gathered courage as they waited for the news.

The 39-year-old says her worry was not getting diagnosed with cancer but finding out it was in an advanced stage where little could be done to save her.

Cervical cancer, caused by human papillomavirus (HPV), affects the neck of the womb and is the second most commonly diagnosed cancer after breast cancer and the leading cause of cancer deaths in women.

Thirty-three in 100,000 women in Kenya have cervical cancer and 22 per 100,000 die from the disease due to, among other factors, inadequate screening and misdiagnosis, according to the World Health Organisation.

“I told the medics to avoid taking us in circles and tell me if I had cancer. One of them called Njeri told me I had stage II cervical cancer,” she notes.

Being told that she would be treated and declared free of cancer offered relief. But she was fearful about her future and going through similar pain like her late mother.

She was referred to Aga Khan Hospital, where a number of procedures and treatments were to be done.

Her family could not raise the required Sh1 million to start treatment, prompting her to look for a cheaper hospital.

She was not enrolled with the National Hospital Insurance Fund, which takes care of diagnostic tests and surgical operations for cancer patients who pay a two-year premium in advance.

“One of the specialists at the hospital linked me to another private hospital, where a repeat test to establish the stage and spread of the disease was done,” she says.

Several tests, including a biopsy, were prescribed to determine whether the detected abnormalities were caused by cancer or other conditions.

The medical procedure involves taking a small sample of body tissue for examination under a microscope.

A week later, the results were out, corroborating those from the previous screening.

“I was asked to choose between having another child, which would cause the cells to multiply, or having my uterus removed,” Ms Makena remembers. “I chose life over disease. I thanked God I had a daughter who was seven years old at the time.”

But she was worried about how her community would perceive her if she would not give birth to many children, as her Ameru traditions demand.

A surgical operation to remove the uterus was to be urgently done but she could not raise the Sh700,000 needed at the second hospital.

Lacking an alternative, one of the specialists at the hospital asked her to find a facility with affordable theatre charges and promised to undertake the surgery.

Her family settled on Chogoria Mission Hospital, where she was diagnosed. She booked the operation a week later.

“The doctor came two days before the operation date with a nurse, who prepared me for the surgery, which I was told would take at least 10 hours,” she recalls.

“I told him I did not mind even if it took the whole day as long as I would get well”.

The entire procedure cost her Sh250,000 with Sh50,000 as theatre charges.

All women are at the risk of getting cervical cancer, which is prevalent among those aged over 30.

The most common treatment for early-stage cervical cancer is hysterectomy or radiation therapy, which is mostly done together with chemotherapy.

HPV vaccination prevents cancer, though it is recommended for girls aged between 11 and 12.

After a successful operation, Ms Makena could barely get out of the hospital bed for a whole week, and she spent an entire month on medication before she was discharged.

“After the operation, I was asked to sign a consent to have my uterus removed,” the mother of one says.

Immediately after being discharged, she suffered stigma and avoided public places, but she overcame this after a few months.

“I was the talk of the town and it affected me so much. They mocked me that I could not get more kids but I told them I was content with my daughter,” she recalls, saying support from her family helped greatly.

She was put on medication and required to return to hospital for regular reviews. She spent at least Sh15,000 every month.

Ms Makena was advised to stop taking the drugs after five months and to take a Positron Emission Tomography (PET) scan a year later to determine if the disease had been completely eliminated.

When we caught up with her in Isiolo town.

“I have learned to be grateful because it is by God’s grace that I survived,” she says, hastening to reveal that she was still struggling with post-treatment side effects.

“I cannot bend or lift heavy stuff because of the after effects”.

The cancer survivor says high costs and late diagnosis of cancer makes it difficult for patients to access treatment on time.

Cancer treatment costs range between Sh800,000 and Sh1.5 million, depending on the hospital and type of therapy the patient needs.

Kenya has nearly 50 oncologists to serve over 54 million people, meaning one specialist is supposed to handle 540,000 Kenyans, according to data from the Medical Practitioners and Dentists Council.

“A majority of those diagnosed cannot afford to start and complete treatment,” Ms Makena says, urging others to be screened.

Her three friends who did not undergo surgery after diagnosis have since died.

In a recent interview with the Nation, she said healing starts with the patient accepting the situation and facing the disease head-on.

“I had to be strong for my daughter because I did not want her to go through the pain I experienced when my mother got sick and finally died,” she said.

She said lack of committed caregivers and pharmaceuticals for managing cancer patients hinders their recovery.

The government, she says, should offer free cancer screening at public hospitals for early detection and ensure drugs are affordable.

“Providing free drugs, especially to those whose disease is in late stages, would ease the burden on them and their families,” she says.

“If you hear there is free screening being offered at the nearest hospital, run there because that step could save your life”.

Ms Makena shared her story to encourage other patients and survivors who might be facing stigma.

“Let them come out and share their stories to motivate others who might have or are on the verge of giving up to fight on,” she appeals.

Ms Makena was declared cancer-free in July 2016.