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Nicola's blog: How to find independence while living with a brain tumour

Published on: 17/01/2024

Meet 13-year-old Nicola. In her blog, Nicola talks about her life, what it’s like living with a brain tumour, and all the fun things she can get up to thanks to Chestnut Tree House.

“I’ll start by telling you a bit about me”  

I’m 13 years old and I like adventures more than I like going to school. Exploring is way more fun than doing maths, even though I’m quite good at sums. When I’m not at school, I like to go out for the day – sometimes to the beach or to the woods with my dog, or to do fun things like ice skating.  

I was diagnosed with a brain tumour when I was five years old. I don’t remember that much about getting poorly because I was young. I went to hospital a lot to get my blood checked and I had to have chemotherapy and some operations. That’s when I started to get wobbly and I had to start using a wheelchair.   

I like to go out and do things without my mum and dad, and one of the only times that happens is when I’m at Chestnut Tree House. Going to Chestnut feels like I’m going somewhere by myself which is cool. Susan, who looks after me, will come and pick me up from my house and we’ll drive there together. I like spending time with Susan because she’s funny. She’s always teasing me and makes me laugh.  

“I would like to be a disability influencer one day”    

Recently, Susan arranged a makeover and photo shoot at Chestnut Tree House which was so much fun. I would like to be an influencer because I’m not scared of talking about my views and disability – I already have my own YouTube channel.  I would like people to know that that having a disability isn’t the end of the world. There’s still a lot of work to do, because the world isn’t set up so I can do the things that everyone else can.   

On the day of the shoot, we went to Chestnut Tree House’s prom boutique in Bognor to try on dresses ahead of my makeover. There were so many beautiful dresses that I found it hard to choose, but the lady in the shop was very kind and she helped me to pick the perfect dress that looked really good on me. We even had non-alcoholic prosecco while I was choosing!   

I also had my nails and hair done and finally it was time for the photo shoot with the lovely photographer, Sorcha. I loved it – it made me feel like a celebrity for a moment.  

“There is so much fun stuff going on”  

One of the things I most look forward to about going to Chestnut is jumping on the big trampoline. Some people think that because I use a wheelchair sometimes that means I can’t jump or walk or swim, but that’s not true.   

When I am feeling a bit tired or wobbly, then I will sit in my chair and like to paint, bake cookies and cakes, or make things. I’ve just made a bird feeder out of a fir cone that I am going to hang on a tree at home so the birds can peck at it. I love animals!  At Chestnut there is a horse that visits and owls, and I’ve also met lots of reptiles and held a snake. I think snakes are a good pet because they don’t stink, they don’t make a sound, and they don’t wee on your sofa like our naughty dog does sometimes! I asked my mum if I could have a snake and she said no. She says I’d turn the house into a zoo if I could. That would be fun.  

“I get to choose what I’d like to eat and do at Chestnut”   

Probably the best thing about Chestnut is the food because it’s yummy. It’s cool being able to pick from a menu – not like at home where I have to eat what my mum makes. My favourite is the halloumi kebabs with pitta bread and salad and for pudding I mostly like the banana split cake on a Sunday.  

I also love music and at Chestnut I get to play the drums, guitar and the keyboard and make loads of different sounds. I like singing too, but I prefer to do that in my kitchen at home when a good song comes on the radio, rather than in public. I also enjoy dancing, and I really want to join a wheelchair dancing group, but there aren’t any in Brighton where I live. I’ve tried wheelchair football, but I wasn’t sure about it. 

“Being in a wheelchair doesn’t stop me from having fun”  

Just like other girls my age, I like to hang out in Brighton because there are lots of cool shops. Sometimes I ask Susan to take me shopping, but I prefer to go to Chestnut now because I think, why spend money when you can recycle clothes and make your own? It doesn’t always go to plan when I make things, but it’s better for the world and way cooler.  

I think I’m like all other kids my age. I like to be independent and love having adventures, and Chestnut helps me to do that. But the brain tumour does make me different, and I want to share that too

Watch Nicola's videos

If you’ve been affected by Nicola’s story you can find more support at the Brain Tumour Charity website, who provide services specifically for young people living with brain tumours. 

Nicola’s blog was originally published January 2024 and was updated January 2025 with new images and words by Nicola. With thanks to volunteer photographer Sorcha Bridge for use of the images of Nicola’s makeover.