Patients and caretakers wait to be attended to at the Uganda Cancer Institute in Mulago, Kampala, in 2018. PHOTO | FILE
In his book titled The Endless Struggle, Aggrey Wunyi shares the sad experience of nursing his breast cancer-stricken mother, coping with her death, and the endless demands from his large extended family.
The 94-page book, published and printed by Makerere University Printery, is an exposition of the experience faced when a person considered to have hit the jackpot is faced with daily requests for black tax from the people who surround them. This is often out of a deeply ingrained sense of family responsibility.
Wunyi recounts his experience through the lens of a young boy called Bogo. Wunyi, having weathered the storm in early life, is faced with the unpalatable reality of having to meet the expectations of his people. His incomes fail to meet the demands and he faces a near crisis. To compound matters, his mother is diagnosed with a terminal illness and he has to take care of the medical bills alongside other incessant requirements.
The Endless Struggle gives a chronological account of Wunyi, who rose from humble beginnings en route to working in the public service. He hopes this book holds out answers to the questions and suspense built by his 2019 publication, The Agony of a Rising Star.
Wunyi attended Jinja Senior Secondary School for his O and A levels. He holds a Bachelor of Arts in Social Sciences, and Master of Business Administration degrees from Makerere University. He also holds a Post-Graduate Diploma in Accounting from Uganda Management Institute, among other professional accomplishments.
Corruption, witchcraft
Wunyi’s working life started in Iganga District as a graduate sub-county chief in Bukooma Sub-county before serving at the district headquarters in various capacities. He later joined the Office of the President as principal assistant secretary and has served in various ministries, departments and agencies. He is currently the Under-secretary of the Uganda Police Force.
As a fresh graduate sub-county chief, Wunyi was exposed to the workings of the civil service under the supervision of elected leaders.
“The elected leaders were, however, not much interested in civil service procedures but in serving and pleasing their electorate…,” he writes.
He adds: “Having political leaders who were often elected by the people meant that certain policies could not be implemented without their blessings, especially if they affected the very people who elected them.”
Wunyi observes that the “implementation of the collection of graduated tax was often one area of conflict between the sub-county chiefs and elected leaders.” He also writes about how the endless demand from his relatives has taken a toll on his income. Not to mention the corruption and witchcraft that is rife in local governments. When his workmates began corrupt tendencies, the community was wondering why Wunyi wasn’t taking bribes like the others. They were often advising that a “cow mows where it is tethered.” That Wunyi was not picking the crumbs from the table where they had been placed. Some of his workmates were later interdicted over misappropriation of taxpayer’s money.
Mother’s terminal illness
Wunyi was born in the Baise Igaga royal clan in Busoga to Patrick Ntange and Benedicta Namutebi. His mother was a primary school English teacher, who later joined elective politics. His father, a police officer, died when Wunyi was a young boy.
Losing his father at a tender age, Wunyi swore to make his mother the proudest woman on earth. Fate, though, had other ideas. A mentor, counsellor, friend and confidant, Wunyi’s mother wore many hats in his life. So he was taken aback one morning when his mother was diagnosed with cancer.
Wunyi writes that society prepares us for nearly everything, save for death. He could not fathom the reality of the prognosis the most important woman in his life had been told about. Each time he thought about it, he could not catch sleep.
Cancer soon took its toll on his mother’s health, he says. It seemed as though she had a premonition of where this illness was taking her, an endless struggle that she had to battle. On occasion, symbols of reflectiveness seemed to flash on her face. You could notice a note of tragedy in her voice. Her voice had grown smaller and husky. Her eyes remained of the same size, only gazing at things that she wanted to see comprehensively. His mother’s life was starting to alter in another way he could not tell.
Yet, sickness played the fool’s game. When Wunyi thought he could buy her happiness all her days, sickness continued to confine her to the cold hospital beds. In and out a few days and in again. Wunyi’s heart was ripped; bore the sinking harrow of seeing a once strong woman of valour unable to command the children but speak in a low tone, holding her rosary.
Dashed hopes
Wunyi says he sought out every physician of repute, but all agreed that keeping the old woman in the national sick bay was most sensible. That left him with only one duty, to be a visiting guest, as well as find the means to help her recover at any cost. He had now adjusted to a new routine where the office came next to the hospital visits every day for more than a year, hoping against odds that one day, his mother would be able to pick herself up again, wear a smile of tenderness and tell the good old folktales that made him feel like a grown-up.
The relatives visited Wunyi and also checked on the patient. Many of them often sought support from Wunyi, irrespective of the bills he had to shoulder while his mother lay in the hospital struggling with unending pains and dilemma of what would befall her loving children.
The long absence of his mother from her home caused a falling fortune for the family. The much-respected homestead became anyone’s source of tools, food and sometimes vandals took with them basic family property.
She was discharged after months of undergoing chemotherapy and surgery to some parts. She returned to her home in a fair condition but required a lot of care and attention. “…However, the level of vandalism she saw only devastated her the more, the place looked desolate and altered, she only grew more sick at the disrepair and horrible state of the once glowing and welcoming home,” he writes.
Gravely impacted
According to Wunyi, his mother’s condition worsened and she was returned to hospital. The disease had grown to stage four and, therefore, the doctors were managing all but pain. He says her state of worsening weakness and exhaustion, headaches, seizures, dizziness, shortness of breath at times, and difficulty swallowing fluids left tormenting impacts on his emotional state of mind. Her face flooded with emotion, a mother who was never economical with her smile now frowned easily. Her appearance too was gravely impacted.
“…Her former glowing skin was now dry and flaky. There are those hours of darkness when she would complain of the sharp stabbing pain that came and went, the persistent aches in her breast, legs and her caretakers would massage those parts, and after a turn, she would experience a tingling and burning sensation,” Wunyi writes.
He adds: “At unexpected times, you could see tears running down her cheeks. Her hair, nails and skin were longer for her, due to the pain and uneasiness. Here, experts explained that she felt that way because at night is when the production of the anti-inflammatory hormone, cortisol, is at its lowest. So this causes the patient to experience a lot of pain and discomfort.”
Death
Wunyi’s mother finally succumbed to cancer. She died in Mulago hospital in Kampala in April 2015. His mother had used her earnings as a teacher to educate all her seven children.
Wunyi, the third born, had graduated and the rest of his siblings were on the verge of securing university degrees. Wunyi’s mother died when the youngest of her children was aged 16.
“She had started enjoying the fruits of her efforts when death knocked her out. The children could afford treatment in good hospitals, but there was no known cure for cancer,” he writes.
He mentions the pain of looking after a terminal patient and the toll on the family, the frustration of his mother and her battle against cancer. The high cost of managing stage four of cancer.
Wunyi also gives a snapshot of how families sell assets to sustain their patients. Ditto the pain of losing someone close to you, the expenses of burial ceremonies in current times, and why Ugandans would rather contribute to burials than medical bills.
Other things that perplex Wunyi are the dubious service providers and pickpockets at burial ceremonies. Above all, he wonders why some Ugandans still believe in witchcraft as the main cause of death. They, he adds, continue to do so even when there is a report of a post-mortem with a clear physiological cause of death.
Author’s appeal
As a result of his own experience, Wunyi makes a strong case for Uganda to adopt medical guidelines on euthanasia (assisted dying). He argues that it is time to adopt a policy around terminating the lives of terminally ill people. He suggests that the patients should be assisted to end their painful existence. Patients should be allowed to write wills on how to end their lives when the pain becomes unbearable.
The book
Dedication
The author dedicates The Endless Struggle to those who have bravely fought against cancer.
The book can be purchased at Aristoc Bookshop at Shs30,000.
