Time to talk: supporting cancer patients and their children

Receiving a cancer diagnosis can be devastating and many people face another emotional challenge – how to share the news with their children.

It’s one of the most difficult conversations that a parent will have, which is why Guy’s and St Thomas’ has teamed up with the not for profit organisation, Fruit Fly Collective, to provide support to families and help improve communication.

Cancer Cloud Kits, created by Fruit Fly Collective, contain items to help children and young people understand what cancer is, the treatments given, and the side-effects they may cause.

Some of these items include toys, games, stickers, story books, a worry box, a feelings tree and a doll’s house.

Thanks to support from generous donations to Guy’s and St Thomas’ Charity, 45 parents who are being treated for cancer at Guy’s Cancer Centre were given a free kit as part of a pilot study.

So far, 100% of parents said the kits had a positive impact on their family, and 86% said the kits gave them the confidence to talk to their children about cancer.

When Tracy Blow was diagnosed with breast cancer she used the kit with her 10-year-old son, Nathaniel.

Tracy, from Hither Green in south east London, said: “I knew I needed to be honest with him about my diagnosis and the kit helped immensely. I would have struggled if I hadn’t had all those ideas in one place.”

The 53-year-old added: “The first thing Nathaniel grabbed was a cuddly tiger called Apollo, which gave him comfort. He carried him everywhere and Apollo now lives at the bottom of his bed.

“We used the paperchain people to explain the roles of the different clinical staff who were looking after me, and the timetable to track my chemotherapy appointments so he knew when I wouldn’t be feeling very well.

“The kit also includes a pack of cards with different questions so he would place one by the side of my bed when he wanted to know the answer to something but found it too difficult to ask me himself, such as ‘are you going to die?’. His resilience is amazing and he’s done really well at school during such a difficult time.”

Claire Watts and her husband, James, used the kit with their 15-year-old daughter, Cerys, when James was diagnosed with lung cancer.

Cerys has autism, severe learning difficulties and is non-verbal so the kit helped them to explain what was happening.

Claire, from Eastbourne in East Sussex, said: “Cerys is a very visual learner so using the picture book and playing with the doll’s house helped so much, and we finally feel she may be understanding why day-to-day life is so different.”

The 39-year-old added: “We continue to use the kit to try and explain changes in treatments and routines. It’s an amazing project which will be invaluable to so many families at such a difficult time. Relieving some of that anxiety for a frightened child makes such a difference to the whole family.”

Dr Caroline Leek, founder of Fruit Fly Collective, was inspired to create the Cancer Cloud Kits after losing her father to cancer. She developed the kits in collaboration with healthcare professionals, artists, patients and their families.

Dr Leek, a mother-of-two, said: “A week before my 13th birthday my father died from cancer. There were no conversations about his illness or death, and my mum and I never really spoke about him again. Things started to crumble in my 30s and that’s when I faced up to the massive hidden grief I had been carrying.

“Research shows that children with a parent diagnosed with cancer are at risk of developing emotional problems, such as anxiety, sadness, anger, and feelings of irrational guilt. These emotional problems are often made worse by both the child not understanding what cancer is, and poor communication between the parent and child.”

June Allen, Head of Nursing for Cancer and Supportive Care at Guy’s and St Thomas’, said: “The Cancer Cloud Kits offers an invaluable toolkit, providing interactive information which has really helped to support families in having difficult conversations with their children.”

There are three different Cancer Cloud Kits with age-appropriate tools:

• Hedgehog Cloud Kit is aimed at three to five year olds
• Tiger Cloud Kit is aimed at six to 11 year olds
• Cancer Cloud Kit is aimed at 12 to 16 year olds

Guy’s and St Thomas’ Charity raises money to make the Trust’s life-saving care go above and beyond; from big things to small touches that help patients and their families feel looked after.