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From the mouths of babes: This is what it’s like to be diagnosed with a terminal illness before you’ve finished primary school

Death comes for us all and when it does, we hope it’s a good one. We hope it has meaning, we hope it’s painless and that those we leave behind are cared for. Turns out, it doesn’t matter if you’re 80 or eight.

The young girl in the picture is ecstatic. She’s just finished a hike up Table Mountain. Cassie Mitchell’s* hands are stretched out in victory, etched out against Cape Town’s fresh blue skies. Mitchell has terminal cancer.

The picture sits in Jennifer Geel’s office rooms at the Charlotte Maxeke Academic Hospital. The paediatric oncologist splits her time between the hospital and the Wits Donald Gordon Medical Centre at the University of the Witwatersrand down the road.

“When she was diagnosed, we were ready to try everything,” Geel explains. She adjusts her pale pink cat-eye glasses from the podium where she’s speaking. It’s at an academic conference on paediatric cancer in Johannesburg.

Mitchell’s medical team jumped into action to cure the teenage patient, consulting with international experts and planning for a host of treatments. After initial treatment failed, Mitchell chose not to pursue further care.

A good death: Morphine and beyond

At Charlotte Maxeke Academic Hospital’s child cancer ward, Brenda Herbert is the ward mother but to patients like Buhle Ngcobo* the retired nurse is just Mama Brenda. 

Ngcobo, about four years old, was a drama queen and all the nurses adored her. They were thrilled when the girl’s cancer was cured: She was finally in remission and could go home.

When Buhle’s mother burst back into the ward months later with a screaming child in her arms, Herbert was convinced the little girl was just being her melodramatic self. 

“Her shoes were two sizes too small,” she says. “I thought that was what was causing pain, and I bought her a bigger pair.”

But little Buhle’s cancer had returned. A short while later, she died at home.

Herbert sighs: “To our shame – that child died in pain.”

In 2014, about 1 000 children and adolescents were diagnosed with cancer, South Africa’s cancer registry data shows. The data on how many of the country’s childhood cancer patients survive is scarce. But in a small South African Medical Journal study conducted at two paediatric cancer units, about 50% of the young patients were still alive 5 years after being diagnosed

Each year, nearly 2.5 million children die in pain from life-threatening diseases such as cancer, a 2017 report by The Lancet Commission on Global Access to Palliative Care and Pain Relief shows.

Back at the hospital, Buhle’s death shook Herbert.

When she took a moment to look around the ward, Herbert realised that the children’s pain was being neglected. 

She explains: “Busy doctors would prescribe morphine sparsely. Some children would get it once a day, some twice a day if they screamed.”   

Pain management is a crucial part of palliative care, which improves the quality of life of people with life-threatening illnesses such as cancer. This kind of care also includes psychological and even spiritual counselling for patients and their families – to help them die in a humane way.

But in South Africa, morphine is highly regulated as a schedule 6 drug, which means nurses can’t prescribe or administer it. A policy to change this has been in draft form for at least six years. 

In Uganda, nurses and specially trained palliative care workers have been allowed to prescribe morphine since 2004. Once nurses were allowed to help patients manage their pain, palliative care could soon be found in nearly all health facilities in the country, according to The Lancet Commission report

As early as 1992, the World Health Organisation noted that doctors and nurses’ fears about possible addiction to pain killers had left a pain gap worldwide, leading health workers to withhold pain medication until late in a person’s illness and to under-prescribe for pain, 2001 guidelines published in the Southern African Journal of HIV Medicine note. The authors called this fear unwarranted.  

In Johannesburg, Herbert decided to interview nurses in the ward, asking them whether or not they thought correctly prescribed morphine would lead to addiction. 

They all said yes.

But it’s rare for people who take prescribed morphine to become addicted, says Liz Gwyther, the chief executive of the Hospice Palliative Care Association of South Africa. 

She explains: “There’s very little research into the addictive properties of morphine when it’s used for pain therapy, partly because it’s such an old and cheap drug. The big companies aren’t interested.”

A 2003 article published in the journal Continuing Medical Education also says that if managed correctly, patients are unlikely to become psychologically or physically dependent on morphine. The publication merged with the South African Medical Journal in 2014.

Next, she put the following question to the sister: Do you feel like you know how to manage pain?

Not a single one betrayed any doubt. 

Oncologists aren't the only thing in short supply. Doctors also complain of facilities with a dearth of gloves
The fault in our stars: When children are diagnosed with cancer, its devastating, and treating their pain is about far more than morphine.

Managing a patient’s physical suffering is only one part of palliative care also includes psychological and even spiritual counselling for patients and their families to help a person to die in a humane way or adjust to a new reality of living with a chronic condition.

In Herbert’s ward, nurses began to notice that uncomfortable hospital waiting chairs and the anxiety of a sick child were taking a toll on what were largely mothers and specifically their necks and shoulders. 

“Opposite each sick child is a mom, propping herself up on her elbow, just watching their child – for hours”, Herbert says.

So the ward sisters came up with a simple solution: Neck and shoulder massages.

At the end of the rubs, nurses would place one hand on a mother’s back and the other just below her collar bones, Herbert explains. The nurse would then put pressure the mom’s chest from both sides, pushing hard. 

It was as if the motion set off something in the mothers, she says, releasing weeks of fear and anxiety in worried moms who would collapse into tears. 

But for every mom, dad, grandmother or grandfather worried sick about a cancer patient — there’s often a brother, sister or cousin watching as well and a sick sibling can bring up a range of emotions: Fear, loneliness — even jealousy, says Chantel Lowry, a social worker at the Wits Donald Gordon Medical Centre. 

She explains: “Siblings are often the forgotten casualties when it comes to life-threatening illnesses.”

One sibling Lowry counselled had no idea his sister was ill, and instead thought his mother and sister went on a holiday without him every so often, when in reality they were going to hospital for cancer treatment. 

That’s why the Childhood Cancer Foundation of South Africa (CHOC) organises an annual “sibling camp” where children can ask people like Chris Hani Baragwanath Academic Hospital’s oncology fellow Thandeka Ngcana anything they want about cancer, chemotherapy and death. 

Most importantly, says Lowry, they have the opportunity to play.

Over the course of her career, Herbert has learned that pain goes far beyond muscles, and should be treated with more than morphine. 

She concludes: “Pain management is an art.”

Into the great unknown

The Charlotte Maxeke Academic Hospital is opposite a tree-lined street just north of the city centre. There, in Geel’s office, the photo of Cassie Mitchell sits in silence.  

Her mouth is wide open. 

“She’s shouting, ‘I’m free, I’m happy’”, Geel says.

“Adolescents think they’re immortal,” the doctor sighs. “We nasty medical people tell them otherwise.”

The unknown is scary but even a sick teenager wants to know what death will be like.

“I’ve had some of the most brutal conversations with teenagers that begged me to tell them every gory detail,” Geel explains. “Often, they want to know whether they’ll be in pain when they die,  whether they will lose control or they’ll ask if they can die at home surrounded by familiar things.”

Geel pauses, then warns:  “Don’t disregard what they’re feeling because they’re dying anyway. We have to keep giving them the best care possible. They’re living, until they die.”

She died a few days after she returned on her trip from Cape Town and after conquering Table Mountain.

When Cassie Mitchell was given all the information she asked for, supported by her parents,  she chose to forego uncomfortable treatment in exchange for better quality of life.

“She saw her friends. She shopped for her grandmother. Baked.” 

Geel brushes hair from her face, the audience is quiet as she describes Cassie’s last months.  “She lived her life to the fullest.” 

* Not their real names

[Updated 9:00am 4 July 2019 This story was amended to reflect that all patient names are pseudonyms. An earlier version of this story did not mention that Mitchell initially received treatment but chose not to pursue further care after that failed. It also said that her photo sits at the Donald Gordon Medical Centre, not Charlotte Maxeke Academic Hospital.]

Joan van Dyk was a health journalist, senior health journalist and news editor at Bhekisisa between 2017 and 2023.