1st November, 2019
I’ve had my brain tumour since I was 16 months old. It was first diagnosed when people noticed that my eye was going funny but my sight had already gone by the time I had a scan. I needed surgery and unfortunately the part of my brain that controls body temperature was damaged during this. However, I don’t complain because if it wasn’t for the surgeons I wouldn’t be here.
I was in and out of hospital during my childhood and I remember feelings and emotions rather than dates and facts! For example, I remember the other children on my ward and also being scared of the mask to receive anaesthetic, but I was able to have a line in my hand instead. My auntie said I looked like an alien when I when I was hooked up to the brain monitor in hospital but I have no memory of this, which is probably for the best!
I have a shunt which drains fluid from my brain into my stomach and this is my second one. I grew up too quickly and too tall for the first one, so it had to be replaced because it broke! We realised this because I was getting really bad headaches from the fluid filling up and pressing again my brain. It was all solved when I got a new shunt put in though.
I have no sight in one eye and tunnel vision in the other, so my hearing is quite acute! Having good hearing isn’t always a blessing, I can get lost in places purely because of noise. I got lost in the supermarket once when I was younger and the people talking and the music was overwhelming. I remember going to a model train exhibition with my granddad, and the longer we were there, the more difficult it got because of the amount of people. I had to leave because I was starting to get panicky. I’ve developed ways to manage my anxiety though. For example, if I can’t concentrate on where I’m looking and panicking, I just stand still and take deep breaths and calm down.
I don’t really remember much about my brain injury because I was so young and growing up with it was normal for me, I didn’t know any different. School was hard because of my eyesight and reading and spelling was difficult (still is!). I never had a lot of help with my brain injury, apart from my family, until I started at Headway Cambridgeshire with their youth project.
Headway Cambridgeshire has been the best thing for me. It’s got me thinking and using my brain but the best part is that it’s got me out of the house and meeting other people with similar problems. I really enjoy doing practical activities where I can use my hands, so sessions like Outdoor Project, Bushcraft and Art sessions at the hub have been really helpful.
My confidence has definitely increased, I didn’t have one bit of confidence when I first joined Headway Cambridgeshire. The proudest day of my life was probably when I taught skills that I had learned in Bushcraft session to children at Headway Cambridgeshire’s summer party. I suppose it proved my confidence and that I could do it. I actually walked up to people and asked if they wanted to learn. I did it myself, that’s the thing, and they were having fun learning from me. It was really nice to see them enjoying themselves. I’m also more confident outside of Headway, for example I just met a man the other day out and about where I live who also has tunnel vision, and he asked me for advice about my white stick. I told him it helps immensely because I no longer fall down kerbs that look smaller than they actually are!
I did Simon’s Growing Together course a couple of years ago, which taught me a lot about permaculture and increased my gardening knowledge. Everyone went onto a placement afterwards and I volunteered at Denny Abbey, creating and maintaining an allotment, growing lots of fruit and veg. The next step from this is what I’m currently attending which is “Grow, Share, Eat”. It’s absolutely brilliant, we are growing fresh fruit and vegetables to help people living in food poverty, so for example we are donating what we grow to Cambridge City Foodbank.
Every Tuesday, I go to Wandlebury Woods for Outdoor Project. I love the problem solving and the fun of it. For example, we’ve just been making a coffee table but we had to work out how to split a log, the shape of it, how to use the saw horse and blade at the right angle to make the surface smooth to hold our mugs! I enjoy talking to the visitors walking past too and explaining what we’re up to. I’m learning a lot of new skills on these projects and my confidence is still increasing.
David at the Outdoor Project
“ The Hospital Brain Injury Co-ordinator became someone who absolutely understood how I felt, I didn’t need to explain. I could talk about my fears and worries. She was such a great support through the difficult days, but could also celebrate the small step successes, which was important to me. ”