A Personal Journey

Simone’s story

After being diagnosed with a brain tumour Simone Baldwin’s biggest concern was how she was going to tell her young son. Five years on and she has turned her experiences into a children’s book so that her journey can help as many other people as possible…

Diagnosed with a brain tumour when her son Sam was only six, Simone Baldwin desperately began to look for a book to help her tell him the news, but just couldn’t find anything

suitable.

Simone has been a primary school teacher for over twenty years, and was teaching in Rhos-on-Sea when she was diagnosed. The lack of available resources for parents inspired her to create a picture book to read with children to help talk about tumour diagnosis. Not just brain tumours, but any tumour.

“I wrote a poem for young children, aged approximately three to eight, called ‘Mummy has a lump’, to begin conversations about tumours,” explains Simone. “The book includes a section for parents about my own experiences of telling my family. Everyone’s experiences are so unique, I hope reading about my journey will help other parents decide what feels right for them. I found an incredibly talented illustrator, Caroline Eames-Hughes, who created beautiful and gentle illustrations that help with explanations, but without being too clinical. We believe this type of book is vital for parents facing a scary diagnosis and worrying about telling their young children.” The book has received huge support through social media and Simone has raised enough money to make her idea a reality, providing free copies of the book for local libraries, schools and charities. As a Welsh learner, Simone has also worked with the support of Rhys Iorwerth to publish the book in Welsh, ‘Mae Gan Mam lwmp’.

“We continue to fundraise to provide additional free copies of the book to local libraries, schools and charities supporting newly diagnosed parents. It is already working its way to most libraries in Conwy and further copies for libraries can be requested through my website,” adds Simone, who answers some further questions below…

Why is your book important?

When I was diagnosed with my brain tumour, the biggest worry as I was walking out of the hospital was about telling my family, including my son and stepsons. ‘What do I tell them?’ hit me like a sickening punch in the stomach. This was closely followed by the questions of ‘Should I tell them?’ and then ‘How do I tell them?’

I spent almost an hour in the hospital car park trying to decide how to act when I got home, and whether to say anything. There is so little support out there for talking to children. I think it may be because no one ever wants to really think about having to do that, but when you are faced with that decision, it’s huge. Added to that is the complication that kids are far more switched on to our emotions than we often

Simone began her writing journey at Llyn Brenig ‘Mummy has a Lump’ is available to buy in paperback and online

Left: Simone with her young son cycling in Llandudno just before her diagnosis

Above: ‘Mummy has a lump’ was written to help start conversations with children about tumours

illustrations in this book aim to help explain this side to children, but in a much softer and more gentle way. Everyone is so different in how illness affects them and how they feel when dealing with it. This is true for both adults and children. I’ve tried hard to share that message in my book too. I don’t have advice or answers for people at this difficult time, but if

my book does help in a small way, great.

How has your tumour affected you?

I consider myself very fortunate in that my brain tumour is benign. However, because of where it is in my brain, the speed it was growing and the damage it was doing, I had to have major surgery to reduce it. The surgeons did an amazing job and removed a lot of it, but some of it had to stay in there because of the parts of my brain it is attached to. I have had several surgeries to deal with the effects of it and am monitored regularly to check for any signs of continued growth or further damage. I’m a very different person to who I was before and it affects me daily, but I’ve learnt to adapt, accept my new normal and I’m doing well. My family and friends have been a huge support, including our youngest son. They understand how I’m a bit different now and have to do things a bit differently and that’s OK.

give them credit for. They can often sense when something is wrong or when we are hiding something. I am terrible at hiding things so was worried this would make things worse. There is a section in my book when I explain my decisions. They might not be what someone else would do, but I think hearing about someone else’s choices can sometimes help us to make our own minds up.

What has been the toughest part of publishing?

Because I knew what I wanted the book to do, getting it started was the easy part. I’m not a natural writer though, so felt extremely self-conscious when I finally started to

share my idea and the text. Showing my writing to people for feedback and proofreading was definitely the hardest

part. Whenever I got stuck, I took a deep breath and turned to social media to ask for ideas and contacts. I found Caroline, the amazing illustrator that way. I received some extremely valuable publishing advice through contacts of friends on social media too. Most publishers are understandably in the business of finding titles that will make them money. Printing

children’s colour picture books is an expensive business and the nature of the book isn’t aimed at being a Christmas best seller – quite the opposite really, we don’t want people to need this book! So, I had some wonderfully supportive feedback

but, in the end, I worked with a hybrid publisher and starting fundraising to cover the costs.

How do you think this will help parents?

I really hope that this book will reach the people who need to use it and act as a bit of support for parents. Reading about when and why I told my children may help others, and for parents who like me, decide to tell their children, I hope the picture poem will provide a starting point. The clinical side of illness can be quite sterile and hard. The words and

How did you find writing the book?

At the time of my diagnosis I looked hard to find something to

help me, and so I suppose the seed was planted then. It was a few years after my diagnosis that I started to think about what I would have liked access to. One day while sitting on the edge of Llyn Brenig waiting for my family to finish their

bike ride, I just started to jot down ideas and the poem started to form. I hope the peace I feel when I go there has come across in my writing. I don’t profess to be a natural writer, but I hope I have done enough to provide some support to others. I moved to North Wales in 2011 and have worked hard

to learn Welsh through Bangor University. I feel strongly that when people are vulnerable, support should be available in their first language, which is why I wanted to make the book

available in Welsh too. My Welsh language isn’t yet good enough for the nuances of a sensitive subject like this, so I worked with Welsh poet Rhys Iorwerth. n

Written and illustrated in Conwy county, ‘Mummy has a Lump’ is available to buy as a paperback from Amazon, as well as by request through local bookshops and Waterstones. It is also available as an e-book through Amazon, Kindle and Apple books in both Welsh and English.