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A Hertfordshire couple whose daughter died aged 13 have spoken out about the language around terminal cancer used by medical professionals to raise awareness during Dying Matters Week.

Alan Birikorang and Chiara Contillo have shared their thoughts about the language used by professionals working with cancer patients, particularly the notion of ‘losing the battle’ against cancer which implies there are 'winners and losers'



Alan and Chiara's daughter, Daisy, was diagnosed with Rhabdomyosarcoma, a rare type of childhood cancer, at the age of 12. Following many hospital admissions and treatments, Daisy and her parents were told that the treatments were no longer working. Daisy made the decision to stop treatments and to spend her final weeks at home.

During her illness, Daisy and her parents were supported by a number of charities and cared for at home with support from our children’s community nursing service, where she passed away in November 2023. 

Speaking about the moment they were told the news Daisy’s treatments were no longer working Daisy’s mother, Chiara said: “I think there’s two things. One, although Daisy said and we agreed that she would be involved in every part of the cancer journey and that’s why the news was delivered to Daisy and us at the same time - I think that was the one time where we would have appreciated an exception to the agreement. 

And then, I think the language around cancer that’s used about ‘losing the battle with cancer’. I just think it’s wrong. It’s implying that in the battle with cancer, there’s winners and losers … that language does not apply when you speak about cancer.

“Daisy didn’t lose the battle. Daisy fought the battle. Who lost the battle? I think we lost the battle as a society because Daisy’s treatment was 30 years old. There were no new drugs because there weren't enough funds for a rare childhood cancer, and that needs to change. And that’s the change I would like to see.

In addition, Chiara has since called for a move away from the term ‘chemotherapy cycles’ for treatments, as a cycle can suggest no end and can be discouraging for patients.

The couple have launched Daisy’s Arc in partnership with Alice’s Arc charity to fund research projects into Rhabdomyosarcoma, the rare childhood cancer that robbed Daisy and many other children of their future. 

Dying Matters Week, which runs until Sunday (11 May) aims to encourage conversations about dying across communities. 

Mary Heffernen, our Clinical Quality Lead for children’s specialist community nursing said: “It’s vital that we listen to the experiences and feelings of families, like Daisy’s, so we can learn as professionals how better to support those who are planning for end of life, who are dying and those who have been bereaved.

“The Dying Matters campaign aims to break the stigma around death, to challenge preconceptions and to normalise public openness around death and dying. 

“Thank you so much to Chiara and Alan for adding their own very honest and open thoughts to this conversation. I hope as many people as possible working in health and social care get a chance to hear what they have to say, and it influences how they work with patients with terminal cancer in future.”

We are committed to listening to and working with patients, carers and their families to improve delivery of its services. Find out more about our patient and family liaison service.