Simone’s story
Simone was diagnosed in 2017 with an acoustic neuroma brain tumour and has had to have several surgeries to remove as much of the tumour as possible and limit further growth and damage. She explains how support has helped her through her experience:
I was first signposted to Brain Tumour Support when I was struggling to continue to work. A friend suggested I contact the charity to ask for advice and that’s exactly what I got. I attended virtual support groups which gave valuable advice and helped answer the questions I had at the time. It was a couple of years after my diagnosis that I started speaking to a Brain Tumour Support Professional one-to-one.
Having attended group sessions early in my recovery, I had decided I didn’t need any personal support. However, at the time when I had to accept the problems caused by my tumour meant I could no longer continue with my 20+ year career as a primary school teacher I had my first chat with Support Professional Debbie.
It was such an uplifting conversation. I felt like a weight had been lifted. I hadn’t even noticed what a considerable weight I had been carrying around until it was released. I realised I’d been working so hard to put a brave face on things so as not to upset my family, that having someone who I could talk with easily, like a catch-up with a friend, without worrying about upsetting them or being judged was a terrific gift.
I can’t stress how much that support meant to me, at a time when I needed it a lot more than I realised. I think we keep going for family sometimes, but in order to do that, we have to let someone in to help take care of us!
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.
Simone Baldwin | September 2022
Simone’s picture book to support other parents
Despite her long experience as a primary school teacher, as a parent Simone struggled to know when and how to explain to her own six year old son what she was going through. So she wrote a poem for young children to guide such conversations. Through the support she received she developed this into a picture book to help other parents in a similar position.
It was through talking with the Support Professional Debbie that I mentioned my early idea that I wanted to create something to help parents going through similar experiences to mine. I’m normally such a private person, I remember saying ‘I can’t believe I’m telling you.’ But I’m so glad I did because it is now a reality.
Guiding conversations gently
I wrote a poem for young children, approximately 4-8 years, called ‘Mummy has a Lump‘, to guide conversations about tumours. The book includes a section for parents about my experiences and how I told my family. Everyone’s experiences are so unique, I hope that reading about my experiences will help other parents decide what feels right for them. The beautiful and gentle illustrations, by Caroline Eames-Hughes, are designed to 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.
Having produced the book Simone continues to fundraise to provide additional free copies to local libraries, schools and charities supporting newly diagnosed parents.
She has also created a version for fathers and a Welsh language edition.
Organisations can request a copy through Simone’s website, or it’s available to buy as a paperback by request through local bookshops or online.
Brain tumours can affect any one of us, irrespective of age, lifestyle or general health. Every 40 minutes someone in the UK receives this shocking diagnosis, and when faced with the words ‘You have a brain tumour’ the right support to help navigate the path ahead is vital.
Brain Tumour Support wants to ensure that no one feels alone at any stage of that journey. So if you are able to make a donation, helping us to be here for more people like Simone, we would be very grateful. Our support services are always free to access and rely on the generosity of fundraising and donations to be maintained. Thank you so much.
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