Cancer burden falls heavily on Kenyan women

A generation of middle-aged Kenyan women is dying in a cervical cancer epidemic that few are talking about. Cancer, especially of women’s reproductive organs is now common in low-income neighbourhoods, but the disease is shrouded in silence due to shame culture, lack of sex education and stigma around sexually transmitted illnesses.

Every year, about 5,236 Kenyan women are diagnosed with cervical cancer and about 60 per cent of them (3,211) die, according to the World Health Organisation’s latest data. The number could be more, given that many cases go unreported. 

But what is more worrying is these women, some already burdened by HIV/Aids and poverty, are caught off guard by another disease that they know little about.

Kenya is taking steps to minimise cervical cancer cases by aggressively pushing for vaccination against human papilloma virus (responsible for the disease) among girls aged 10, before they become sexually active. But there is little mass education and screening of older women.

And the barriers to timely detection and effective treatment abound. Where does a bleeding woman in a slum or a village seek help? Can a clinician in a dispensary detect cancer? If the cancer is finally diagnosed hundreds of kilometres away from a referral hospital, how does one find her way to the hospital or even pay for National Health Insurance Fund (NHIF)? What standardised treatments should one receive and which public hospitals offer them? Business Daily spoke to five women on the burden of the disease.

PAMELA MBAISI, 50, A MOTHER-OF-THREE

I had mixed rat poison in a glass, and poured paraffin on my clothes. I was just waiting to light a matchstick, drink the poison and burn myself inside my house.

That was a week after being told I had Stage 3b cervical cancer. In public hospitals, there’s rarely room for counselling. I had seen five doctors before being referred to Kenyatta National Hospital.

The doctor told me I needed to look for money or an NHIF card before I start treatment. 

I had no money so I went home and waited to die. My husband had abandoned me. He said he could not live with a woman who bleeds continuously. When I started bleeding in-between my menses, he accused me of having extramarital affairs. He left me with three children and remarried immediately.

I had started spotting {light blood flow} at 47 years, before it progressed to heavy bleeding that I could use 16 sanitary towels a day or old cloths when I could not afford pads.  

When the bleeding continued for two years, I confided in my sisters that perhaps it could be cancer. They told me cancer does not run in our family. But I knew something was wrong when I saw yellowish watery vaginal discharge.

I went to a clinic in Nairobi’s Kariobangi. The doctor said he could only do a pelvic exam when I was ‘dry.’ I went back home and waited for weeks for the bleeding to stop. One day, I rushed to the clinic, queued for hours, only to start bleeding. He sent me back. I remember going back four times, before he finally told me “I’m suspecting you have cancer” .

Because the clinic has no pathology lab to assess for cancerous cell, I went to a women’s hospital. I found two nurses. They tried examining my cervix and blood gushed out. They were scared. They told me to wait for the doctor, but not to tell him that they had examined me. He repeated the test and told me to do a biopsy and go to KNH immediately.

I had no idea that cervical cancer is treatable. So when I was handed the biopsy report on December 2017, my biggest fear was burdening my children. I contemplated suicide.  I had no money for treatment, not even Sh1,150 for card registration in a public hospital. So I waited for the cancer to take its toll.

Two years after the diagnosis, my body became frail. I had a persistent sharp pain in the lower abdomen, fainted anywhere and anytime, in the market, in church. People thought I had epilepsy yet I was anaemic due to years of bleeding. 

Finally, I met a doctor who pitied me and gave me a Sh7,500 cheque to pay for NHIF. I did radiotherapy sessions (25),  chemotherapy (2), and  two brachytherapy, which the hospital waived the fees because I had exhausted my cover.

People had started preparing for my death. A relative changed my land title deed to his name, but if fought in court and secured it. I plan to build a house and rebuild our lives.

ROSE ODERO, 50, A MOTHER-OF-THREE

My husband was told to marry another wife because no one survives cancer. His relatives did not care that my cancer had been found relatively early (stage 1B) and my chances of survival were high. I do not blame my husband. Most Kenyans hear the word cancer and start making funeral  arrangements. He did not remarry. But sadly he died of lung cancer four years after my diagnosis. He used to work in a paint company and developed pneumonia-like symptoms. By the time he was seeing a doctor, the cancer had metastasised to his brain.

Mine did not start with any visible symptoms. I was not bleeding and had no abdominal or back pains. I had gone for my annual HPV screening. My Pap smear test showed some anomaly. A month later, a biopsy test showed that I had cervical cancer. I was lucky that I had a job then, so the insurer paid for the treatment.

But I soon lost my job, my husband died after we had exhausted all our savings on his cancer treatment. My children dropped out of college. Cancer has turned me into a beggar. I look at my children, wasting their youth at home. I worry about their future.

I also worry about the over 18 women with cervical cancer in a support group that I have founded. Most have no source of livelihood, they live a life of cat and mouse with their landlords. NHIF partly pays for treatment, but most cannot afford the Sh500 monthly cover payments. Even I cannot afford to go for check-ups.

The Health ministry tells people to go for cancer screening. So what good is it if the cancer is detected early in a woman too poor to afford treatment?

Some give up and commit suicide. Others die alone in their houses, hiding from the shame of living with body odour.

SOPHIA WANGARE, 31, A MOTHER-OF-TWO

I knew cancer was a disease of rich people. So when I bled for almost a year and a half and a doctor in a Kiambu hospital blamed it on my hormones going haywire, I believed him. He gave me medicine to stabilise my hormones. But when I started experiencing heavy bleeding immediately after sex, I went back to the same hospital. I found a different doctor, a female. She found a swelling in my cervix, picked a small tissue from it, and sent it to a private hospital for a biopsy.

After two weeks, I got the biopsy results, took them back to the public hospital. The doctor told me to go to Kenyatta National Hospital, but she did not tell me that I had cancer.

I walked into the hospital and saw cancer writings on the wall. That is how I knew I had cancer, seated in a group of older women. I was later told that I had Stage 2b cervical cancer.

A year and a half later, waiting in queue for treatment and trying to get money to pay for NHIF, still bleeding, I started radiotherapy, (23 sessions), three cycles of chemotherapy, and three for brachytherapy.

It was a struggle. I had to rely on friends to give me cash for brachytherapy in a private hospital because the machine at KNH had broken down. 

Not everyone has family or friends that can raise Sh120,000 for brachytherapy and Sh28,000 for follow-up MRI scans. 

Most of the women I had met earlier have not done the treatment because they cannot afford it.

I had to stop working at a sweaters knitting company, using a standing sewing machine. The treatment sapped my energy so much that I could not stand for long or bend to fold sweaters.

Now I rely on my mother to fend for my two children. But for how long will she help?

No family should have to choose affordability over survivorship.

*GEORGINA MAKOKHA*, 42, A MOTHER-OF-TWO

I have spent over Sh3 million treating cervical cancer. I am in remission. I should be happy but the fear of getting a second cancer or a sexually transmitted disease lingers. 

My husband’s ways are ‘fishy’ that I fear that he is putting me at risk of getting HIV/Aids or a second cervical cancer, now that the chemo compromised my immunity.

I did not know much about HPV but through cancer meet-ups, I learned that it is sexually transmitted. 

Every time I confront my husband about his multiple partners, he raises his voice and threatens to beat me. I don’t know who will educate him on this disease. Who will I ask to talk to him so he understands the risks he is exposing me to?

I lost my job after coronavirus hit. I hope to get financially stable, buy land in a different town, build a house and leave him.

He started straying when I was bleeding and in and out of the hospital for blood transfusion. There is a time when I lost so much blood, which came out as big clots, that I had to stay in the hospital for two weeks for blood transfusion. They could transfuse eight pints in days, and most of it comes out.

The first time I bled, I thought it was due to weather changes. I had travelled out of town and got menses twice a month. But I still went to the hospital and I was told I had an inflamed cervix and given tablets. 

One day, big blood clots came out  when I stood up to alight from a matatu. I decided to go to a hospital. On reaching the gate, I fainted. 

At first, the doctors thought that I had done an abortion. I thought the same, a miscarriage perhaps, not an abortion.

The doctors scrapped some piece of tissue from the cervix and took it for testing. Two weeks later, I was told I have Stage 2b cervical cancer.

What pains me is that my husband never helped. People talk of how their husbands accompanied them to clinics, went out to buy drugs, sat with them in doctor’s offices, I did not have that kind of support. It is the kindness of strangers that saw me through, from a former boss who give me a medical insurance card with Sh1 million inpatient and Sh100,000 outpatient limits, yet I was a casual worker, to friends who support me emotionally.

Even his family asked him to marry another wife in line with their customs. They said I was dying and their son ought not to be alone.

When I got a recurrence in 2016, I took a loan, built a house at his home so that the homestead will look decent during my funeral. 

Now that I’m well, after the second cycle of treatment, it feels like a thrill of victory and agony of defeat.

I do not want to live in that house. My in-laws were toxic when I was sick. Because my uterus was removed, they said I could no longer give my husband children,  yet I already have two, in fact, boys.

But how will I educate my children if I leave my husband?

MONICA NJERI, 50,  A MOTHER-OF-THREE

Ironically, when the news came, I was glad to finally know that I had cervical cancer. I had lived in pain and distress, seeing one doctor after another, taking drugs that were not helping.

All my symptoms ticked with what I had heard on a vernacular radio, but no doctor told me that my tests showed that I had a suspicious tumour in my cervix.

I was bleeding and I had sharp pain in my lower abdomen and every time a doctor would do a physical exam, he’d look shocked.

The first time I went to a public hospital in Nairobi’s Umoja estate, I was sent to a private lab, just across the road, which I had to pay for out of pocket. I went back to see the doctor with the tests, he looked at them, did not bother to explain the medical jargon, and told me to go to the pharmacy.

I bought the prescribed drugs, but they did not help. Most of my friends are religious. In church, matters concerning sexual health are rarely discussed and if you have no husband, you have no one to confide in. When I finally managed to tell my friends about the bleeding, they told me to persevere.

“It is menopause,” they said. The pain continued. With all my medical reports in tow,  I decided to go to a private clinic. I told the doctor to tell me the truth because I was tired of being in limbo.

He looked at the reports and wondered why I hadn’t been told that I had Stage 1 cancer.

I needed Sh20,000 for surgery to remove the diseased uterus. I borrowed the money from friends and family, did the surgery and I thought that was it. 

After a few months, the abdominal pain came back, more severe. I decided to go to Kenyatta National Hospital. The oncologist did a vaginal exam and wrote ‘urgent’ on my medical reports.

I went for another biopsy and an MRI. The scans showed the cancer had progressed to Stage 2b. A few weeks later, I started 25 sessions of radiotherapy, one cycle of chemotherapy and three cycles of brachytherapy.

But it is the stigma that women go through that makes it hard to live with the disease. People mock us, they say we were prostitutes, or started having sex at an early age.

With heavy discharge that sometimes leaks through clothes because most women cannot afford sanitary pads, society thinks we are dirty and contagious. We  use a shared bathroom or toilet and everyone else stops using it because they fear that they might get cancer. 

Some people move out and leave us alone in a plot {Informal settlements in many iron-sheet homes cramped up cities}. Because our toilets are non-flushable, others pour buckets and buckets of water in the toilet before they use them to protect them from ‘cancer germs.’