Ellen Bisci, a 27-year-old resident of Harrow, is using her own journey as a survivor of childhood leukaemia to raise awareness about the challenges that survivors of paediatric cancer often face.
Diagnosed with acute promyelocytic leukaemia (APML) in 2005 at the age of nine, Ellen experienced a relapse three years later, which was compounded by a stroke. The extensive treatment she received left her grappling with a range of enduring side effects, commonly referred to as late effects, significantly impacting her life.
In support of Childhood Cancer Awareness Month (September), Ellen has joined forces with the Children’s Cancer and Leukaemia Group (CCLG) to share her story and shed light on her experiences.
She explained: “Although I’m many years post-diagnosis, I’m living with many long-term side effects of cancer and its treatment, which impact every aspect of my life.
“I’ve got intracranial hypertension, which is fluid on the brain. I’ve had 13 brain surgeries for this, including having a shunt put in.
“I suffer from chronic migraines and chronic fatigue, the exhausting nature of which affects me every day.
“I have urinary dysfunction, issues with my thyroid and my heart rate shoots up when I stand up. I also have focal epilepsy, and I’ve been left with problems with my memory and facial recognition from the stroke.”
On top of all these longer-standing health issues, Ellen was diagnosed with heart failure in September 2019, describing the moment as “a massive blow”.
“Coming so long after my treatment – 11 years – it was such a shock. I couldn’t believe how it could suddenly impact my body the way it has.” don’t want my story to worry others but instead give hope to other families
These ongoing struggles have impacted all aspects of Ellen’s life – not just her health, both physically and mentally, but everything from her education and relationships to finances and day-to-day activities. This, she said, has taken her a “huge amount of time to come to terms with”.
She said: “There’s a perception that once treatment finishes, your life returns to normal, but for many of us, this isn’t the case. Most people, if not physically but emotionally, are impacted in some way from their cancer.
“It’s taken a mental toll and I think it took me so many years not to compare myself to peers I’d been at school with, and dwelling on things like I haven’t been to university, or I haven’t done this or that.
“It’s deflating when you know you’re not able to do what others are able to. Even now, I have to pace myself if I’m out and then make sure I have two days of rest after because of the fatigue. And, because of the stroke, I’ve got issues with my memory and that’s where I struggled with education and taking exams.
“So, my life is very different to others, and I think that’s difficult to navigate as a young person. I’m stronger now, but it’s taken me 15 years to get to this point.”
She continued: “I don’t want my story to worry people – while I’ve been left with a lot of late effects, they don’t impact everyone in the same way or to the same extent.
“It’s pretty unusual for people to have all of these late effects that I do, but it is also my reality, and I feel that there needs to be more awareness of late effects and that more people need to be talking about it.”
Ellen believes there’s hope for a brighter future thanks to charities like CCLG funding research into finding kinder, more effective treatments that will result in less long-term impacts for the patient.
She said: “I’m extremely hopeful that with the newer treatments that are available now and that continue to be modified and found, late effects won’t be so impactful for childhood survivors in the future.
“It would be great to get to a stage where all children not only survive but do so without all these side effects.
“We also need research looking at support for people with late effects, and that’s why the work of CCLG, who funds research across the whole cancer journey, is so important.
“The more research we have, both into new treatments and how to support survivors, the better for future generations. Hopefully, by speaking out about my experiences, people might want to donate and help fund such research.”
Ashley Ball-Gamble, CCLG Chief Executive, said: “We’d like to say a huge thank you to Ellen for sharing her story and helping us raise awareness of the long-term impact of childhood cancer. We’re working hard to change the future for children with cancer, by conducting pioneering research into finding better treatments and understanding how young people can be supported in life after treatment.”
Reflecting on her journey, Ellen said: “I’m so grateful to be alive and I really do find joy in every single day. “That’s one great thing that cancer has given me – a deep love for the world and being alive, and an appreciation and enjoyment of the little things in life.”
“I know it sounds clichéd, but there’ll always be something good in there if you look for it.”
Read more of Ellen’s story at https://www.cclg.org.uk/ccam/ellens-story or follow her on Instagram: https://www.instagram.com/ican.cer/?hl=en-gb
