
Spotlight
First-of-a-kind cancer journey scrapbook launches on World Cancer Day
Receiving a cancer diagnosis is undoubtedly a scary and difficult experience to go through, and for families it can be even more challenging when faced with the reality of having to explain the situation to a young child.
People sometimes feel they are protecting children by not telling them about a cancer diagnosis or shielding them from all the facts. It is natural to want to protect children from difficult news. They may have worries that stop them talking about it and may feel that talking about cancer will make it feel more real when they are still struggling to accept it. But explaining what is happening may make things less unsettling for children.
Children often know when something serious is affecting the people they are close to. They may also notice changes in how the adults around them are feeling and behaving. It is a daunting and unfamiliar time for everyone – and that’s exactly why colorectal cancer support worker, Amy Harper has decided to do something about it.
Amy, who’s based at Yeovil Hospital, was inspired by her own lived experience of cancer to create a helpful resource for children to be able to navigate the cancer journey of their grownup. Launching on Tuesday 4 February, which is also World Cancer Day, the first-of-its-kind scrapbook-style folder will feature personalised depictions of the colorectal cancer pathway specific to Yeovil Hospital – including pictures of colleagues and locations within the hospital, as well as space to add their own creative flair and emotional thoughts and feelings about what their grownup is experiencing. There are even QR codes dotted throughout which will lead children to informative and engaging videos explaining more about each stage of the cancer pathway.
“I was inspired to begin this passion project of mine because I was a parent with cancer myself and I had a real understanding of how hard a conversation of this kind can be,” says Amy.
“Extensive evidence shows us that children would cope better if they felt included in the cancer pathway, but there’s a huge barrier when it comes to parents wanting to protect their children – and I think what’s prompted me to launch this book is to help parents and children through their fear of the unknown. It will be so important for us to be able to offer a resource that can help families have some of the hardest conversations they’ll ever have to have.”
Amy’s book is far from the usual type of storybook you may find in book shops on the high street – it has been meticulously designed to present a unique experience to each child that uses their copy. Alongside smiley faces of colleagues the child is likely to meet along the way, there’s always space for them to capture how they’re feeling and any questions they may have. There’s also a support section in place, featuring national and localised information to keep children and families informed along the way, as well as a glossary to explain the many new words children may hear. It’s designed to be an adult’s cancer journey, through a child’s eyes.
“This is a very exciting project, as it’s so unique to us. As a colorectal cancer support worker, I’ve based this pilot on the journey I’m most familiar with. We are hoping that families will support us in developing this based on their experience with it, allowing us to constantly fine-tune.
“After the first 12 months we want to review what was helpful, and what maybe wasn’t. And then we want to relaunch to encompass all cancer pathways across Somerset FT, such as breast, lung, cervical or bladder,” adds Amy.
“It would be a fantastic resource to be able to offer across the county. We are also aiming to produce a duplicate resource early autumn for our colleagues in colorectal cancer services at Musgrove, customised of course to their colleagues and locations. I’m working closely with my counterpart, Christopher Finch, to tweak and produce a new version.”
Crucial to the launch of this project has been the support and belief in the success of the book from our very own Somerset NHS Charity. James Kirton, head of charity, said: “We thought this was a great project for the charity to get involved with and make a difference.
“We are providing the funding for the design, creation and printing of the resource. The final book that each child will receive is only being made possible by the generous donations we receive.
“Like all charities, we have a committee that decide which projects are a good use of charitable funds – and Amy’s idea was a very compelling case. We believe it’s going to make a massive difference to families and children at Yeovil Hospital, and hopefully beyond, in the future.”
Even though Amy was diagnosed with cancer prior to having children, conversations around cancer are important in her household. Going through the trauma that she did, it changed Amy as a person and how she approached parenting. She knows full well the fear that a cancer diagnosis can trigger, and she is ambitious in her goals for what the resource she’s developed will do for families and their emotional wellbeing.
Amy hasn’t been alone in her mission; it’s been quite a collaborative project. She was also keen to not recreate the wheel too much and build upon the fountain of information that already exists from organisations such as Macmillan Cancer Support and Fruitfly Collective.
“When I had this idea, I reached out to Caroline Leek, CEO of Fruitfly Collective, and we met to discuss the work she had done, and how I might be able to repackage the wonderful resources out there so that they reflect our community at Somerset FT. They were a huge support and donated a lot of resources to our project – especially when it comes to feelings and the impact of emotional wellbeing.
Cancer touches millions of lives in countless ways but it doesn't define who we are. We are more than a disease, more than a statistic. World Cancer Day falls on Tuesday 4 February 2025, with this year’s theme focused on being ‘united by unique’, placing people at the centre of care and exploring new ways of making a difference.
Cancer is more than just a medical diagnosis – it’s a deeply personal matter. Behind every diagnosis lies a unique human story – stories of grief, pain, healing, resilience, love and more. That’s why a people-centred approach to cancer care that fully integrates everyone’s needs, with compassion and empathy, leads to the best health outcomes.
It’s a fitting day for Amy’s book to launch and to celebrate with her team, she’ll be hosting a launch event in the Health and Wellbeing Hub at Yeovil Hospital. Plans for the book following launch are that on diagnosis, each patient, along with their treatment plan, will be asked if there’s a child who’ll be impacted by this news – and if so, will be offered the new cancer journey scrapbook for their child to use.
“It’s been a long 18-months of excitement, nerves, anticipation and hard work. I’m a bit of perfectionist and sometimes quite impatient – so it’s being interesting to say the least, as this is the first thing I’ve project managed in such a way. Now it’s coming to the end of it, I’m just really excited for it to launch. It’s such a precious and sensitive time for families – and I just want to get it right. If it’s helpful and makes families experience that tiny bit easier, I’ll be happy.
“The journey is only just beginning – how exciting is that!” concludes Amy.