Seizures, memory loss, chronic fatigue: the after-effects of childhood cancer that no one talks about

Ellen Bisci is fighting to raise awareness of the after-effects of cancer - Jeff Gilbert
Ellen Bisci is fighting to raise awareness of the after-effects of cancer - Jeff Gilbert

When I contact 24-year-old Ellen Bisci via email to arrange for an interview, she asks if her mother and aunt might join us. “I have trouble ­remembering things after my stroke,” she explains. Memory loss is just one in the daunting list of after-effects ­Ellen has suffered as a result of the leukaemia she was diagnosed with in 2005, aged nine. She now wants to raise awareness of the late effects of cancer, and so through Leukaemia Care (one of the charities supported by the Telegraph’s Christmas appeal), I find myself at Ellen’s North Harrow kitchen table along with her mother Tina, aunt Kay, and “chug” – chihuahua pug cross – Bella, to sip mugs of tea and piece together the intricate tapestry of Ellen’s life in and out of hospital.

“We first noticed Ellen was bruising everywhere, so took her to the local hospital to have blood tests,” Tina remembers. “Ellen was due to go on her first trip away from home on the following Saturday, but the doctor said there would be no harm in her going, and that he would give us a call if they found anything.” But on the very first night, Ellen’s mother and grandfather went to pick her up. They had just received her test results, diagnosing her with acute promyelocytic leukaemia (APL).

This form of leukaemia is one of the rarest and most aggressive: about 200 people are diagnosed with it each year in Britain. If untreated, it can be fatal just 14 days ­after the presentation of symptoms.

Over the following six months, while she underwent chemotherapy at Great Ormond Street Hospital, Ellen developed mouth ulcers, burns through her digestive system, pulmonary edema (in which her lungs began to fill with fluid), and, most terrifying, an allergic reaction to the blood platelets she was receiving. “That was when we thought this might be it,” says her aunt. “Platelets are the clotting agent, so they’re the bit that saves your life. Thank God they were able to deal with it.”

Surprisingly, Ellen talks about the time as though she were describing what she had for lunch that day: “Oh, we sailed through the first round – that was simple in comparison to the relapse.” She went into remission in June 2005. By October, while she felt tired, she was allowed to go to school for half-days and quickly caught up. “Despite everything, she managed to get 99 per cent in her maths Sats,” her mother notes.

Nearly three years passed, during which she achieved straight As, with the promise of attending Oxford or Cambridge to study maths. Although APL is one of the most malignant forms of ­leukaemia, relapse is uncommon. After three years, the family was confident that Ellen was well. “But then I started getting really bad pains in my legs, so bad that I couldn’t exercise any more.” Tina and Kay took Ellen to A&E, little suspecting that it would be related to her cancer. “We’d been told to look out for bruising, but no one had said anything about leg pain,” her mother says.

It was then, at 11pm one night in Northwick Park hospital, that Ellen had a stroke, aged 12. She doesn’t remember much about the event, but it remains clear in the minds of her family. “She lost the ability to walk, to talk. She didn’t regain consciousness by herself, so we were sent back to the ICU at Great Ormond Street,” recalls her aunt.

Ellen, aged nine, with her Grandad, John
Ellen, aged nine, with her Grandad, John

When Ellen regained consciousness, she had a larger mountain than ever to climb. She had chemotherapy that included ATRA, a high-dose vitamin A preparation, and arsenic, a then-experimental treatment for APL. In addition, Ellen underwent hours of therapy to help her walk again. Continuing with arsenic as an ­outpatient was particularly tough. “Some days I’d be in at eight in the morning and wouldn’t leave until nine at night. Arsenic is a poison, so you have to be monitored. I think it hit my heart especially hard,” says Ellen.

She finished the ATRA treatment in 2008. But unlike the first time around, she was left with life-changing side-effects. “I’ve lost a third of my brain mass from the stroke,” she says. “Because of that, I have short-term memory loss. Sometimes I have trouble finding the word I’m looking for. On a bad day, everything goes to pot.”

Headaches and dizziness, side-effects of ATRA, had also afflicted Ellen throughout her treatment; afterwards these became so bad that she became bed-bound. More worryingly, Ellen had started to have seizures, initially diagnosed as a symptom of post-traumatic stress disorder. “Both Ellen and I were referred for psychiatric treatment,” her mother says.

Two years later, it was found that Ellen in fact had high-pressure syndrome on her brain, believed to be another ­effect of ATRA. “I lost two years of my life – every day I was dealing with these unbearable headaches.”

She had surgery on Christmas Eve 2010, to fit a shunt, a tube draining excess fluid from her brain into her stomach. “I felt great for about three weeks, but then I started to deteriorate again.” Since then, she has had 10 operations to adjust the shunt and fit a pressure monitor in her skull, which she points out to me, on the right side of her head.

Though the headaches have improved, Ellen still suffers from chronic fatigue and postural tachycardia syndrome. Recently, doctors discovered that she suffers from “mild heart failure”, where the heart gradually loses the ability to pump blood effectively through the body. It has been more than a decade since Ellen’s relapse, yet she has visited the hospital 65 times since July last year.

This young woman acknowledges that her illness has taken her childhood: “It’s not just the physical stuff I have to live with,” she says. “It’s the stuff I’ve missed out on growing up. I lost all my school friends, and I didn’t get the experiences that others get going through their teens.”

And yet, hers is a family that knows how to laugh. “We had such laughs at Great Ormond Street,” says Ellen’s mother. “It got us through. One night, after Ellen’s largest seizure, she gained consciousness and managed to eat 13 bowls of cornflakes – she couldn’t remember she’d already eaten the last bowl. The nurses were running around everywhere trying to find more things she could eat!”

Ellen uses her experiences to help others in her situation. She is an ambassador for Trekstock, a cancer support charity for young adults, speaking at events when she has the energy, and she has recently started a blog (, creating her own community of people. “Each week someone shares their story, and it feels like I’ve found my tribe. With cancer, everyone is at a different stage, and it can be difficult meeting people who have just started their treatment. It’s nice to have a group of you going through the same thing at the same time.” Leukaemia Care also supports patients from diagnosis through after-effects, and offers information and counselling on life after cancer and its emotional impact.

Though Ellen insists she wouldn’t be able to do any of this without the help of her family, the various consultants and surgeons that have kept her alive, and charities such as Leukaemia Care, her mother contradicts her: it is her daughter’s own steeliness that gets everyone else through. “She’s so brave, and doesn’t complain. And the work she does for other people – she’s just something else.” “Sometimes I get down because I’m not where I should be in life,” Ellen says. “I’m still having a great life nonetheless, and I get to help others.”

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