Our Blog

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

Meet 12-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 twelve 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 also like to explore new countries. I have a bucket list and visiting Japan is at the top. I’ve watched loads of YouTube videos about Japan and there’s some really cool stuff there, like toilet seats that heat up, and restaurants where robots serve you your food! When I’m older, I’d like to have a big campervan with a bed and a sofa in it so that I can travel around England. I want to show people that just because I have a brain tumour, it’s not going to stop me from going on adventures.

“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. At the moment, I only use my wheelchair part time which is good!

As you can tell, I like to be independent. 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.

“There is so much fun stuff going on”

At the moment, the thing 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.

Read our blog about music therapy >

“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.

When I’m older, I want to be an influencer because I’m not scared to talk about my views and my disabilities. I already have a YouTube channel which is mostly short videos of me riding my wheelchair and a few beauty and fashion videos too. I want to let people know what it’s like to have a brain tumour because some people are mean, and they don’t really understand it. When they see my videos, sometimes they are shocked by all the things I can do.

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.