Janet Bornwell’s leg started swelling in 2001. To Bornwell and family, what developed on her leg was an ordinary swelling that would disappear after some days.
Bornwell constantly used some painkillers such as panado to relieve the pain that both medical personnel and herself thought was a mere symptom of not only the tumour but malaria—which was another illness then.
Days of seeking treatment in health facilities across Salima District turned into months and the months paved the way for years but there was no solution in sight.
After four years of unbearable pain, the leg condition worsened and, in 2005, Bornwell was advised to go for voluntary HIV testing and counselling.
She was found HIV positive and the swelling was diagnosed as cancer.
“I was told that cancer drugs were available in private hospitals. I looked for money and went to a private hospital in Dowa District, where I found a drug, which I delivered to Salima District Hospital for safe keeping and treatment.
“But it was difficult for me because the drug was too expensive. It was difficult for me to finish the dosage,” Bornwell.
The future looked hazy and there was nothing she could do, apart from painfully waiting for the worst. Death.
Marriet Twaibu is also suffering from cervical cancer. Twaibu’s concerns were not only the pain from cancer; finding school fees for children became a challenge for a mother who was bedridden for months. She could also not source money for other family needs.
Bornwell and Twaibu were in a situation that is shared by thousands of Malawians, who endure unbearable pain that originates from chronic illnesses such as cancer.
Salima District Health Officer, Ivy Chilingulo, says one percent of over 430,000 people in the district are living with serious chronic illnesses.
“This may sound like a small number. But there are, actually, 4,000 people living with life-long illnesses that affect them physically, economically, socially and even psychologically and they have a right to dignity and good health,” Chilingulo said.
Veteran nurse Lucy Kishindo Finch runs Salima-based Ndi Moyo Palliative Care Clinic and strongly advocates painless life for people suffering from cancer and other chronic illnesses.
Kishindo F inch says palliative care should be a priority.
Palliative care is specialised medical care for people with serious illnesses and this type of care is focused on providing relief from the symptoms and stress of a serious illness with the goal of improving the quality of life for both the patient and the family.
“It could be your loved one, yourself, or anybody. The thing is, we don’t know when it will come to us. So, we must help this service, which gives dignity to people who are dying,” Kishindo Finch says.
Minister of Health and Population Services, Atupele Muluzi, says the government is doing everything to ensure that palliative care is accessible to chronically ill Malawians.
Muluzi says the government offers palliative care services in all health facilities.
He, however, says the government is open to partnerships with non-State actors such as Ndi Moyo.
“They have worked in this area for a number of years, providing dignified care to patients, especially those with chronic illnesses. We are also learning about how we can improve that capacity throughout the healthcare service delivery system,” Muluzi says.
Kishindo Finch, however, thinks the exclusion of palliative care in the 2017-2022 Health Strategic Plan signifies lack of palliative care prioritisation.
Luckily, officials at Salima District Hospital referred Bornwell and Twaibu to Ndi Moyo Palliative Care Clinic and that was a huge relief from the pain they had been experiencing for some time.
Above the care, they were given morphine— a pain-relieving drug and are now living a painless life.
Ndi Moyo, which receives financial support from a United Kingdom-based Trust, provides care to patients suffering from HIV and Aids, cancer and other life-limiting illnesses.
But there are fears of donor fatigue and the situation has prompted the palliative care unit to start seeking financial and material support from local individuals, companies and organisations.
After all, donor fatigue may only bring back the pain.