by Monica Mwangi
It takes about 15 minutes, walking under low rusty roofs and jumping over raw sewage in the Mathare slums in Nairobi, to reach Rosemary Awuor’s work place.
It is a dark shanty made of rusty iron sheets. It’s here that Rosemary sells locally-made brew and has operated her own business since the death of her husband.
In October 2014, Rosemary, 52, felt a lump in her left breast. “I had started feeling pain on my shoulder about a year earlier and with time I felt a swelling on my breast,” says Rosemary, who lives in a one-roomed mabati, steel-roofed, house deep in the slum.
She visited a local clinician who assured her that it was just a boil that would disappear after a minor operation. The clinician then used a large needle to draw out the pus and they set a date for the procedure. Rosemary paid a deposit of Sh9,000 ($90.00).
Rosemary’s daughter, Victoria Atieno, accompanied her on the day of the surgery. Upon reaching the clinic in Dandora, another highly dense slum in eastern Nairobi, Victoria advised Rosemary to cancel the procedure. “It was a shady clinic which my daughter hated at first sight,” she said.
Rosemary returned home and for the next month managed the pain with pain relievers until she was advised by locals to seek treatment from a proper hospital. “I went to St. Mary’s, a private, missionary hospital in Nairobi, where tests were done but nothing was detected.”
Another doctor advised her to have a second biopsy done. The results showed she had breast cancer. “I could not believe it, and I decided to seek a third opinion, which also was positive,” she says.
Rosemary went home and cried most of the time for about two weeks. “I think the moment one is told one has cancer, the situation gets worse. I was in pain all through. I was always absent minded. I cried myself to sleep every night, something I still do to date,” she said.
She went to Kenyatta National Hospital (KNH) at the beginning of 2015, but the earliest appointment she could get for treatment was for late 2017.
Kenyatta National Hospital is the only public hospital in the country with a radiotherapy machine, which is the only affordable option for most patients. Yet, the wait time for treatment is now between 18 months and two years, since it services people from all parts of Kenya. Most cancer patients in Kenya, by the time they are diagnosed, are in stage three or stage four of their disease. The limited treatment options emphasize the need for increased palliative care services.
Rosemary had to seek other opinions. “I knew if I had to wait, I would die along the way,” says Rosemary, resting on her back to ease her pain.
For the next two months, Rosemary would save money and in September 2015 she went to a private hospital, where she was advised to undergo chemotherapy.
“It has been very expensive for me. God should not give poor people these diseases. I now have to survive on loans and donations from well wishers,” she said.
Rosemary has been paying Sh20,000 ($200.00) for a chemotherapy session at Upperhill Medical Centre compared to the Sh6,000 ($60.00) patients pay at KNH (average annual income in Kenya is $1,160). “The last session was done on credit, and now doctors have recommended six more sessions,” she says, adding that her breast is too heavy to walk around with.
Rosemary, who is in constant pain, says she was told she has stage four cancer, which is chronic and often terminal. The doctor has advised against having a mastectomy. “My right breast is swollen and very stiff,” she said. “The doctor said it cannot be cut at the moment.”
Her other breast is also swollen and she is worried it could also be infected.
After the chemotherapy, Rosemary says she feels worse than when she started. “Every time I take those drugs, I don’t leave my bed for at least two weeks. It’s a very painful experience. See what it has done to my hair,” she says, taking off her head covering to show her shiny, bald head.
Rosemary is a mother of three and takes care of six others who are orphans. “I am a bread winner to nine children, and I educate all of them. I really need to live for this, if not anything else,” says Rosemary, who is also diabetic.
About two kilometers from her place of work is Kabethi Gathongo’s home. Kabethi is 72 years old and was diagnosed with prostate cancer four years ago but only had an operation done last year. “They cut off my private parts, I don’t have anything,” he said, adding that the wound is healed but the pain from within is unbearable.
He recently went for his usual clinics at KNH but was told the doctor was not available. He is hopeful that one day he will be completely healed.
Cancer and HIV patients mostly spend their last days of life in severe pain, lacking much needed palliative care. Palliative care is holistic care that involves strong pain medications along with symptom management, counseling, and comfort for the patient. Rosemary says she has been taking diclofenac and panadols to ease her pain, but they are relatively weak painkillers considering the magnitude of cancer pain.
According to Dr. Zipporah Ali, a physician and head of the Kenya Hospices and Palliative Care Association, only ten per cent of people who need palliative care receive it in the country. Dr. Ali says medics fear prescribing opioids, which are strong pain relievers, for fear of addiction and due to strict policies. “If a medic is found guilty of prescribing a drug like morphine wrongly, such a person can be jailed for up to ten years,” she said, adding that most medics avoid taking such risks.
Dr. Ali said that KEHPCA has been working closely with the government to ensure palliative care is incorporated into all government hospitals and into the curriculum of medical school students and nursing school students.
While Kenya requires approximately 400kgs of morphine annually to treat the number of people living in pain, she says that the government bought only 47kgs last year. “Even if those patients eventually die, they should die in dignity,” she said.
Dr. Esther Munyoro, head of the palliative care unit at KNH, says the unit is doing awareness training at the hospital and training nurses on pain management. “Morphine is a wonder drug. We are encouraging medics at the accident and emergency unit to send patients in pain to the palliative care unit where they are offered pain relievers as they wait to see the doctors,” she said. Dr. Munyoro said they want to make KNH a ‘pain-free hospital’. “Pain is important, it helps us make diagnosis, but at the same time, it kills, especially in cancer and HIV patients,” she said.
In August 2015, the overworked radiotherapy machine at KNH broke down, forcing the hospital to send away cancer patients. Kenyatta is the only public hospital that treats cancer charging, Sh500 per radiotherapy session while private hospital charge between Sh5,000 and Sh10,000.
According to the Kenya Cancer Association, 80 Kenyans die of cancer each day. The NGO says that 40,000 people are diagnosed with the disease annually; 30,000 of those will die within the year. Chairman Ann Korir said the number of deaths and diagnoses may be higher, as the figures only reflect cases reported to and recorded in hospitals. “The majority of those diagnosed with cancer are women aged between 30 and 49 and men aged between 45 and 50,” she said.
Breast cancer is the most common cause of cancer deaths in women in both developing and developed countries. It is the most prevalent cancer among Kenyan women and constitutes a major public health problem. Although definitive prevalence and incidence studies are lacking for Kenya, some estimates indicate that breast cancer accounts for about 23 per cent of all cancers while cervical and prostate cancer represents about 20 per cent.
Palliative care nurse at Nairobi Hospice Joyce Wangari says they mostly get patients with stage four cancer.
“At this stage, patients need opioids, and we mostly administer morphine,” she said. They also offer comfort and counseling to the patients. “If a patient is referred to us with stage four liver cancer which is a result of alcoholism, we don’t tell them to stop drinking. That is why we say palliative care is about comfort,” she explained.
Rosemary was never referred to a palliative care or hospice center. She died on December 3, 2015.