{UAH} My mother turned down a biopsy and she died four months later

In May 2012, I took two weeks' emergency leave from my journalist job in Dubai to come to Uganda, after reports that my mother Hajjati Hadija Nakkazi was turning down cancer tests even while physicians believed she had the disease. She had been experiencing hoarseness and vigorous dry hacking cough since January. 
Earlier medical tests indicated she had a multi-pronged nodule but there was no swelling. I had been following up news of her diagnosis and treatments from my siblings, but the disease worsened and occasionally she could not even eat or talk. My young brother Wahab, who was then completing his course in radiography at Mulago Paramedical School, took mum for tests at the hospital and they ruled out cancer. 
However, doctors at Nsambya hospital, where she was admitted a week later, dismissed the results and said cancer was very likely. They did some tests and CT scans to confirm the diagnosis. Oncologists recommended a biopsy to pinpoint the disease's origin but my mother refused, worried that she had seen so many other relatives and old friends die soon after their biopsies. 
Many of her elderly relatives, in fact, advised her not to go ahead with the biopsy. I decided to return to Uganda to ensure that treatments could be started immediately. My grandmother, Museebeyi, had come to stay with her only daughter and she had just one message: "don't allow them to cut any single bit of flesh from the body." Relative after relative – especially the elderly – cautioned me against encouraging mum to go ahead with the biopsy. 
When we met a cardiologist at the Nsambya Hospital, he said there was no way treatment could proceed without the biopsy but we also needed all the children to be present to agree on the procedure. He said my mother was having breathing problems because one of the tubes in her left lung was already blocked, which would require surgical intervention. He referred us to a pulmonary doctor in Kamwokya who operated a "breathe easy clinic" to see what he could do to ameliorate her symptoms but the physician, after reviewing her case history and examining her, agreed with the others who recommended the biopsy. 
He believed it was cancer, so we thought that if mum was being stubborn about the biopsy, then perhaps we could convince the oncologists at Nsambya to start her treatments. I was confused. I truly wanted to help my mother, and do the right thing for her but I also believed avoiding the biopsy was not prudent. My siblings and I agreed that the biopsy should go forward. Yet despite the consensus among us children, we knew this was not a democratic process. My mother and her mother Museebeyi had veto power. More relatives including my father, stepfather and Uncle Kawoya opposed the procedure. 
But some of my mother's former colleagues—doctors she had worked with at the Muslim Supreme Council for more than ten years—offered to counsel her, but she turned down meetings with anyone of them for fear that they just might convince her to change her mind. 
The two weeks' leave evaporated before I could settle the debate about my mother's treatment. I had suggested that she travel to Dubai for treatment, but her mother insisted only if no flesh or tissue was to be cut from her body. In all, I believed these concerns were merely based on emotion and unjustified psychologically motivated fear. If my mother delayed this decision any further, I was certain that she would die.

Caught in a dilemma 
The standoff was taking its emotional toll on me. I remembered all the battles my mother had undertaken on my behalf. She had raised five of us as a single parent and I felt bad that I was failing to help her in the biggest crisis of her life. I thought she was wrong to refuse the biopsy or any surgery but I also knew how much Uganda's medical infrastructure had deteriorated under the current government. I knew many of my relatives whose health went downhill quickly even after what is considered a generally routine procedure in virtually every other country. 
Most importantly, I was worried that I might not see her again. Two months after returning to Dubai, my mother was admitted to Mulago again. She had walked on her own and had passed by the hospital mosque to offer midday prayers when Dr Magid Kagimu, her old classmate in a Gombe School spotted her. He took her immediately to a ward where he ordered she be admitted on the spot so that the staff could move forward her diagnosis and treatment.

Admitted in hospital
She was at the hospital for about three weeks when the results finally came. That evening, my young brother Wahab called, sounding extremely tired, and asked if I had steeled myself to receive the news of mum's illness. I said yes, but with great trepidation. 
Wahab told me that mum's cancer had started in her thyroid and had spread to other organs including the lungs that the doctors predicted she would live only for a few months. I asked him if she had been told of the diagnosis and he said the doctors were open and she appeared shocked. 
The next day she asked to be discharged so that she would return to home to try some herbal medication. She had lost her appetite completely and could not even walk. I spent a lot of time on the Internet searching for ways to save my mother at such an advanced stage of disease. I researched alternative medicines, finding China offered some promising options but they were also prohibitively expensive and would require the long trip to China. 
I went to different hospitals in Dubai, where oncologists and doctors reviewed the Mulago results and while some believed they could still operate and give her a longer life, others despaired and advised hospice treatment.

MOTHER'S LAST DAYS

The late Hadija Nakkazi passed away in July 2012 soon after cancer diagnosis. Courtesy Photo

"When I proposed to my mother to take her to Dubai for treatment, she hesitated and told me she was too weak to make the flight.
Unfortunately, the day after her passport was processed, she had an attack. My brother Wahab called me in the morning and told me they were readmitting her, this time in Mulago's private wing. A few hours later, I received a text message that shocked me: she was expected to live perhaps another three or four days. My sister Faridah called and told me our mother was dying, and that she and the others wanted me to be there. 
She told me Mummy wanted to see me. I asked for emergency leave and returned to Uganda that night. I met a couple of relatives leaving the hospital after they had visited my mother, and everyone had the same message: "Good, you have come on time; your mother's situation is desperate." When I saw my mother, her eyes widened and were clear and I felt a glimmer of hope. I thought it was encouraging that she was completely conscious. The doctor told me the next morning that her weakness had been exacerbated by her refusal to take in any nourishment. She had been fed only water from a spoon for almost a week. The doctor said the tumour in her throat had almost closed the entrance for food, and water and her breathing capacity had been severely constrained. Once, the staff could provide nourishment to her, she would become strong enough to endure the cancer treatment.

Last ditch efforts to save life
He suggested an ENT specialist examine her that day to see if a tube could be placed through her nose to feed her. I was around when the specialist turned up at my mother's bedside, and after making all the examinations and going through her papers and scans, he told me he regretted to report that the throat was almost completely closed, so there was no way he could pass a tube. He advised us to consult a surgeon about inserting a feeding tube through her stomach. The next day the cardiac surgeon performed the examinations and concluded that she was strong enough to have the tubal procedure, adding that he had performed it with patients who were in even worse condition. I was convinced yet extremely restless. I wanted it done there and then but there was no chance of it being so soon. He said they would book the operating theatre the next day at 9am. I consulted with all available relatives, and at least everyone knew someone who had the tube inserted and who had managed to survive for a few years.
It was Saturday, July 28, 2012 and I was fully convinced that she would go through the operation and that we could save her, to the surprise of many. 
At a certain point as I read to her, she called my name and I drew closer so she could whisper in my ear. "Sumayya," she said, referring to my sister who has autism, and who had been at her mother's side throughout her life. I got scared. Mama was also despairing. 
By midday on the next day, more than three hours after doctors said they would begin the surgery, my mother had not yet been taken into the operating theatre. Apparently, there were medical emergencies and I sought out any physician who could be more helpful and informative. I noted that my mother was a private patient and we were being charged accordingly. I wondered why she couldn't receive the treatment she deserved. Wahab, however, believed the doctors were stalling deliberately, unsure that our mother would survive the procedure. I dismissed his explanation, noting that the anesthesiologist had seen mum in the morning and cleared her for the surgery. At around 3.30pm, the nurses arrived on the ward with a gurney and a pile of papers they asked me to sign.
I was sleeping on a floor mat just opposite her bed and immediately awakened, feeling a sudden sense of relief. I signed the papers in the presence of my siblings. I had seen mum twice sign papers for me when I was young and needed surgery. After she was taken away, we had a short meeting among my siblings and relatives. I asked Wahab to go home and make porridge that would be ready for mum once she came out of surgery. I asked my sister Mayi to make her bed with clean sheets. Meanwhile, I escorted some relatives and they promised to call at night to confirm that mum had returned safely from the theatre. 
It was approaching dawn and I was downstairs in the hospital when my sister Faridah called from the ward called using Mama's phone. She was crying and could only manage a few words: "Yasin, Mama agenze, Mama Afudde!" 
Our mother had died. Those ugly words still ring in my ears and haunt me at night. She was 62 years old and it had been only four months since doctors discovered the first symptoms.
At mum's funeral, I was asked to deliver a brief eulogy. It was a surprise request and everyone who had seen me breaking down so often thought I could not make it while my mother's body lay in an Islamic coffin (Janaaza) in front of me, but I did. 
I reminded the mourners that the gomesi cloth covering my mother's Janaaza was among her most loved articles of clothing, the same gomesi she had worn eight months previously at my wedding introduction. She could be seen on our introduction video hugging friends at the Wandegeya mosque and bidding our party farewell because as a mother-in-law she could not attend the ceremony. I regretted that of all the people featured on the video, a recording that I cherished so much; my mother would be the first one to be referred to as "late." 
My mother's battle with cancer lasted for only four months. Cancer remains as deadly if not even more so than HIV/Aids. Yet, with an accurate, early diagnosis, treatment has advanced enough to give people even optimistic probabilities of surviving cancer and living longer than the standard benchmark of five years in remission. I wished she had accepted earlier the request for a biopsy as advised by the doctors at Nsambya. 
Those beliefs she and her relatives had about the biopsy prevented us from observing if, indeed, the treatment for her cancer would be effective. Now, we only have the pain of our grief. I wish those individuals who thought they were giving information for my mother's benefit by citing those who died soon after a biopsy would now be willing to tell others that she died sooner without doing the biopsy than those who did have the procedure. I would not wish anyone else's mother to die so soon just because of avoiding treatment. 
Not in life have I had as many questions about death as I did standing at my mother's grave. I had the responsibility of pulling her white linen shrouded body from the coffin, starting from her head and with others helping until her entire body was fully in our hands. Her gomesi cloth that covered the coffin was now hanging on our heads obscuring whatever we were doing from the view of the other mourners. One of the relatives who knew more about Islamic burials than anybody else instructed us to kneel down and we were not permitted to squat as we lowered the body into the grave. They had to remind me two times to untie the knot on her legs so that all the clothes were free but my attention was distracted by looking at my mother's corpse which would now lay forever in the earth. I kept wondering what I could have done a day before to save her life.

Yasin Kakande is the public relations officer of the Islamic University in Uganda (IUIU)

THE CASE

January 2012. The late Hadija Nakkazi started experiencing cancer symptoms such as voice hoarseness and vigorous dry hacking cough.
May 2012.Yasin Kakande travels back home from Dubai after reports his mother has turned down a biopsy to investigate suspected cancer. 
Family standoff. "Oncologists recommended a biopsy to pinpoint the disease's origin but my mother refused, worried that she had seen so many other relatives and old friends die soon after their biopsies. 
Many of her elderly relatives, in fact, advised her not to go ahead with the biopsy. I decided to return to Uganda to ensure that treatments could be started immediately. My grandmother, Museebeyi, had come to stay with her only daughter and she had just one message: "don't allow them to cut any single bit of flesh from the body."

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