Improving Brain Tumour Care surveys share your experiences and help create change

Returning to school – sharing a story

After a brain tumour diagnosis and any length of time off, for many children (and their parents) starting or returning to school can feel overwhelming and scary. The experience of sharing a story can be extremely empowering for a child, allowing them to take some control in a situation that they have very little control of.

I think being able to talk about Maisie’s cancer in the class gave her friends reassurance that it was okay to ask questions. It made Maisie’s transition back to school easier, not only for Maisie, but the teachers and pupils too.

Mum of daughter diagnosed with a tumour

Hopefully, through regular communication with the family, you’ll already have an idea of the kind of information they want to share and how they feel comfortable sharing it. However, the child’s friends may have lots of questions for them, so it might be helpful to speak to the family beforehand to consider how much more they want to share and how they want to share it.

Remember that every child has their own unique coping style, so understanding what feels best for them will help with handling questions and thoughts from others in a way they’re comfortable with.

Do keep in mind that not every child will want to share their story themselves or even at all, if they don’t feel ready. This is fine.

This resource is designed to be used flexibly and so these ideas can be used at any point along a child’s journey, if and when they feel ready.

Questions to keep in mind

Although it’s best to take a child’s lead in thinking about what they want to share and how they want to share this, there are a number of questions that might be useful to have in your head:

  • How do they want to share their story?
Emma Bassett, a primary school teacher who was diagnosed with a brain tumour at 13 in 2004, looks into the camera.

I found holding Charity events and taking charge of these as a child helped me to feel part of the school community.

Emma Bassett, diagnosed with a brain tumour in 2004, aged 12
  • Who do they want to share their story with?

When my boy was diagnosed, I spoke to his teacher who offered to speak to his classmates. My son agreed to her telling the whole year group and he let them ask him questions.

Emma, mum of Charlie (12), on her experience of her son returning to school following a brain tumour diagnosis.
  • When do they want to share their story?
  • What do they want to say when they share their story?

My daughter was 17 at diagnosis. She did her first talk with no hair and took in her radiotherapy mask.

Sarah, mum of daughter affected by a brain tumour
  • How much preparation does the child need or want? It may be that they would like to have one or more practices before they share their story. This may be with yourself or with their family.
  • Do they want to share their story themselves or is this something they might like you or another professional to do?

My daughter was in Year 5 when she was diagnosed. The hardest part was telling her friends. Her teacher was amazing and explained it all

Mum of daughter diagnosed with a brain tumour

We’ve put together an activity book, which can be used by the child to explore their thoughts and feelings about their brain tumour and to help them think about how they might want to share their story. This resource can be a great guide for you as a teacher to get them thinking about what they want to tell their friends. 

Although this resource is aimed towards primary aged school children (7 – 12 years old), it can be easily adapted to suit those younger and older. You may find that with older children (particularly those in the later years at secondary school) taking a more informal approach to planning how they may share their story may feel more appropriate, e.g. using mind maps or simply bullet pointing what they do and don’t want to share. 

Of course, this will all depend upon the individual needs of a child, which can vary hugely.

Please note: For some children, the process of talking these things through, may evoke some difficult emotions. If this is the case, you can help the child by validating their feelings whilst also gently encouraging them to identify their strengths.

Using a strength-based approach is important. It’s about identifying what is the same for the child, rather than just what’s changed.

Dr Emily Talbot, Paediatric Clinical Psychologist

Download the “I’m still me” activity book

Maisie, a young girl diagnosed with a brain tumour, poses for a photo in an over-sized armchair.

I was incredibly fortunate to be Maisie's class teacher and have so many fond memories of her before she became poorly, but also watching her deal so strongly with her illness.

Which format?

Remember, there’s no right or wrong way for a child to tell their story – the ideas and opportunities are endless. Here are just a few:

  • Presentation slides
  • Vlog or blog
  • Photo story to music
  • Speech
  • Comic strip style story

We’ve also created some downloadable cards for the child to show to their friends when they’re tired and/or don’t want to keep explaining how they’re feeling or why they’re behaving the way they are. The resources includes some blank ones for children to create their own

Download the “Things your friend with a brain tumour might want you to know” cards

Rowan, an eight year old boy who was diagnosed with a low grade brain tumour in 2011, poses for a photo with his mum, Kerry. Rowan looks incredibly cool in his sunglasses and Lego Ninjago baseball cap.

Rowan was diagnosed with a brain tumour soon after birth. His visible differences, even at such a young age, triggered us to think about how he would cope at school.

What if a child doesn’t want to share their story?

It’s okay if a child doesn’t want to share their story. There can be a range of factors which affect this, e.g. age, personality, timing and coping styles. We also know that teenagers in particular are often concerned with fitting in with their peers, and that having a brain tumour may make them feel different.

At first, I didn’t want to talk about my illness/only had one person to talk to about it. I found having different ways to express my feelings, e.g. through painting and music, helped.

Emma Bassett, diagnosed with a brain tumour in 2004, aged 13

If the child doesn’t want to share their story, you’ll still need to have a conversation with the pupil about what they do want the school to know about, as they’re likely to have time off. It may be that the child wants the school to know something as simple as they’ve been unwell or off sick. The child themselves can then talk to individual peers about what’s happened, if they want to.

There’s still a lot you can do to support the child at school in a more subtle way, with their agreement. For example, having a ‘time out’ card or gesture when they need to go to a particular (designated) quiet area, if things get too much and they need time way.

Of course, the child may change their mind about sharing their story later down the line, e.g. after a transition to a new year/school.

If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
Support and Information Services
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Supporting you

Our Children & Families team offers support to children, young people and families affected by a brain tumour diagnosis. We’re here to help with any information you might need, answer your questions, listen and provide support.

Jake explains brain tumours

Meet Jake! In this video he helps children to understand their brain tumour diagnosis in a comforting and reassuring way.