‘He cured the cancer I had’ – film-maker on an Irish surgeon who made a breakthrough that saved his life

Mac Cana was 19, a student studying film-making in Manchester. He had just returned to Belfast for the summer when a symptom he had ignored became unignorable. He was diagnosed with Burkitt lymphoma and would endure four months of chemotherapy. He was unlucky; the chances of developing the disease were about one in half a million.

But the factors that led to the identification of Burkitt lymphoma, as Mac Cana discovered, involved an even greater series of coincidences, an odyssey and a mapping of a disease across Africa that owed much to the study of birds in the Fermanagh countryside.

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It was a journey that ultimately helped lead to the first discovery of a virus causing cancer in humans. Mac Cana tells the story in a stunning film that will be shown at the Galway Film Fleadh tomorrow.

Burkitt is the story of Denis Burkitt, a surgeon from Fermanagh who gave his name to the cancer Éanna Mac Cana had. The film-maker’s own experiences are weaved into the film in a subtle, unsentimental and fascinating way which never comes close to self-pity.

Mac Cana could have felt sorry for himself but never did. In a hotel near Dublin Airport this week, he says that when he was diagnosed, he felt isolated and transformed, especially after the first four months of chemotherapy.

During his time in hospital, he didn’t probe too much into aspects of his disease.

“My fear was not wanting to know how serious it was,” he says.

The hospital had been a place of tragedy for his family. His mother came to visit him every day; to a place where she had lost three babies. So there is a haunting aspect to the wave that her son filmed as she used to cycle away.

His aunt had died from cancer earlier in the year he was diagnosed, and he had lost other family members to the disease. Cancer, to him, equalled death.

“People don’t want to talk about the potential of what cancer can do. There’s always a talking around it,” he says. “One of the nice things about making this film is untangling the thing that cancer means you’re going to die, breaking down that word. It is really treatable. There’s a life beyond it.”

But life in hospital at times could feel different. “Death was real on the ward. There were people who were dying. I knew someone who was my age, who had been treated on floor 10, who had passed away,” he says. “I tried not to think of it but I knew it was there.”

“It raised the stakes,” is how Mac Cana reflects on his diagnosis. For a long time, he found it impossible to do anything that he didn’t feel had meaning. “In a way, getting out of hospital made everything seem more real and it hit me a lot more. In hospital, I was an in-patient and I was up there above the city and it was summery and sunny. Lots of other people, their experiences are drawn out, they’re in and out of hospital. In the grand scheme of things, mine was quite quick and intensive.”

But there was a clock ticking inside him. After his treatment, he was told there would be five years of check-ups before he could be formally discharged. Those five years would be an intense experience.

He had “the feeling that you had to live every moment”. “You couldn’t relax,” he adds. “There were times in those five years I lived emotionally and on the edge. That takes its toll on you. Not feeling you can actually breathe or take things slow. You always feel like there’s some kind of weight or pressure on you. That impacts people around you too.

“I was in a relationship with someone at the time. The whole cancer experience really impacted that. That person wanted things from me and wanted things from the future me but because there was always an uncertainty about the future, I felt I couldn’t reach them. Then you start doing things that mess up the present version of you.”

Mac Cana’s interest in Burkitt came four years after he left hospital, when he saw a book titled Irish Masters of Medicine and read a chapter on the doctor. “Your name, my cancer,” Mac Cana says in the film. “It is in the frames of your life that I have found meaning.”

Burkitt had spent a summer in a Belfast hospital after a stone was thrown into his eye. He eventually lost the eye and received a Kodak camera as a gift. Burkitt took photographs wherever he went, most significantly in Uganda and across Africa.

Burkitt was working for the British Medical Service in Uganda when he was asked to see a child with swelling on both sides of his jaw and loose teeth. He had never seen a case like this, a “curiosity”.

A couple of weeks later, he saw a mother with a child outside the hospital and something compelled him to approach them. He left his ward round to examine the child, where he saw exactly the same tumour in the jaw.

“If you see something twice, it’s not a curiosity. We must get hold of it,” he said.

Burkitt was a surgeon, not a cancer specialist, but his work led to a phenomenal breakthrough in cancer research.

He did it through methods he was familiar with in Fermanagh. Burkitt’s father was the county surveyor, but he was also a keen amateur ornithologist and one of the first to use ringing to identify birds in the field. “He was the first person to study the distribution territories of robins,” Burkitt would recall of his father. James Parsons Burkitt was named as one of the seven people who had done most to develop ornithology in the islands.

As Mac Cana researched Denis Burkitt, he said it began to feel like a whodunnit as the connection became stronger.

When Burkitt began to study these symptoms that appeared across a certain belt of Africa, he found that his mapping was similar to how his father would study birds. “He was observing,” says Mac Cana.

The prognosis for the children with jaw tumours was bleak. They would usually die within weeks.

With the help of a pathologist, Burkitt went through old hospital records. They discovered that the tumours were unknown before the age of two and rarely appeared in children above the age of 12. They also appeared most in the north and east of Uganda, rather than in the more populous areas. Burkitt used his photographs to make leaflets identifying the tumours as a malignant lymphoma.

[Burkitt] became human as I listened to him, I got a sense of his little mannerisms. He wasn’t a saint. It helped not to idolise him, just to be truthful

When they mapped where the tumours had been recorded, they appeared in tropical Africa but not in the north or in the south.

As his work became known, cancer specialists made contact and the film notes the extraordinary time when Burkitt, administered chemotherapy to a child in his kitchen. “He was a surgeon, he wasn’t a chemotherapist,” Mac Cana says. “He got a bit of pushback because it’s quite a demarcation in medicine.”

Burkitt was determined to find out what was causing this cancer. Britain was preparing to leave Uganda so time was running out.

He then embarked on the most incredible aspect of his story, setting out in October 1961 on a 10,000-mile safari across Africa to map the disease more precisely. In a Ford estate, Burkitt and two doctor friends embarked on a defining chapter in cancer research. As they drove across the continent, they discovered that the tumours were dependent on altitude as well, but an entomologist noticed something else about Burkitt’s map: it almost exactly replicated the distribution of malaria across Africa, implying that the cancer, too, could be insect-borne.

A few months before the safari, Burkitt had given a lecture at a London medical school which he illustrated with the photographs he had taken. In the lecture theatre was a young virologist, Anthony Epstein.

Epstein believed that if cancers in birds could be caused by viruses, there was no reason the same wouldn’t be true in humans. “We are all considered to be crazy,” Epstein told Burkitt in a conversation between the two that is a compelling moment in the film.

“I could barely sit still,” Epstein says of the lecture as Burkitt laid out the conditions where the cancer was found. He approached Burkitt and they agreed that Burkitt would send samples of the tumours to his lab.

Epstein, alongside a researcher from Carlow, a virologist called Yvonne Barr, would ultimately discover the Epstein Barr virus (EBV) and establish the link between that virus and cancer; 20pc of cancers can now be linked to viral infection.

“I didn’t really get into the EBV in the film,” Mac Cana says, “but the chances of him looking into a microscope and seeing the virus was tiny.”

Burkitt was central to the discoveries about this disease and the development of treatment and it came from the same power of observation.

His father, Burkitt recalled, once stood so still while studying the birds in Fermanagh that an owl mistook him for a post and landed on his head.

“My father’s maps of birds are not unlike how I mapped cancer half a century later,” he said.

Mac Cana got to know the Burkitt family during the making of the film and their own story is explored, including his wife Olive’s struggles with depression brought on by her experiences as a nurse in the war. His absences as he mapped the disease appeared to exacerbate her illness.

Mac Cana made contact with the Burkitt family through the Wellcome Collection in London, which houses all his material.

“I’m very close to the family now,” he says. “He became human as I listened to him, I got a sense of his little mannerisms. He wasn’t a saint. It helped not to idolise him, just to be truthful. They’re a special kind of family, you can feel it in their presence — although maybe that’s because he cured the cancer I had.”

One day during post-production for the film, Mac Cana received a call. He was being formally discharged. He was free of cancer.

Mac Cana looks back on the time and is ready to move on. “This urge I had to make time matter. Everything I did had to mean something. It’s only in the past year I felt I could take days off. Life doesn’t have to be this relentless emotional experience.”

​‘Burkitt’ is being shown tomorrow as part of Galway Film Fleadh. For details, go to galwayfilmfleadh.com/project/burkitt