Brain tumour: Rebekah

Published: May 2018. Written: 2016 (approximately). Date of brain injury: 2011. Age at time of injury: 15 

Shock doesn’t even come close to describing how I felt and how my family felt when I found out I had a brain tumour which was against my brain stem.

The diagnosis gave me answers to why I’d been feeling so horrible for months.

Headaches, dizziness and fatigue were part of life by the time the diagnosis happened.

I couldn’t have guessed how much worse I’d feel in the months after the tumour was removed. Once fatigue arrived, it never left. It’s a permanent, unwelcome companion.

Fred, my tumour

I had an operation to remove the tumour which took more than eight hours. The tumour – I named it Fred – was gone. Relief? Yes! Bewildering? Yes. I woke up not able to walk or talk. I could barely think!

After nine weeks in hospital and three months in residential rehabilitation, I had to relearn most of the stuff people take for granted every day.

I can do a lot of things now but, the truth is, so much has changed. I’ve had lots of laughs and lots of challenges.

Brain training games

My memory suffered a lot, especially my short-term memory. I wasn’t able to remember things that were said to me 10 minutes before.

I worked on improving my short-term memory because that was one of the big challenges I wanted to overcome.

And then came attention! It wasn’t notable at first, not until my family started to talk with me and play games or when teachers and hospital staff started to notice. So I played loads of memory games and puzzles to help improve my memory. I played till I could win. It was like training my brain.

Fatigue

The tiredness that comes with brain injury plays a big role in my health and wellbeing.

When I think everything is under control, fatigue hits and it may take hours, days or weeks to settle down.

It depends on what I’m doing. In my case it comes from nowhere and take hours, even days to pass. On occasions I’ve not stopped at the right time and I’ve found myself in pain.

Confidence and self-esteem

Sometimes I am able to do things on my own and sometimes I’m not able to but I have learned to be okay with this roller-coaster of emotion.

School, college and university

I left school as soon as I could. I did have big plans of going to university and doing chemistry but not anymore because of Fred coming out of my head.

I’ve never regretted my decision to leave school because I’ve learnt other things. I plan to get education in a different way. It’s important not to be afraid of stepping out of your comfort zone and to put your health first.

Friendships and independence

Having a brain injury definitely had an impact on friendships. Some of my friendships ended and some grew stronger.

I made some new friendships with people who I didn’t know before Fred came. I think, mostly it was easier to make new friends with people who didn’t know me before the operation.

But to be honest you need confidence and self-esteem to help you make friendships. If you’re not okay in yourself, it’s not going to happen.

I used to sit in my room a lot. By myself. When my family encouraged me to go out with them, I usually did go but I didn’t always want to and I didn’t always like it.

It took me more than two years before I felt secure enough to make my own choices. Not all the choices were right but they were mine. Now it’s easier to decide where I go and when – but I still find it difficult because I still feel that I need my family’s help to travel.

Jobs and working

I do voluntary work which works really well for me. It means I can evaluate and manage what I do every time I go.

I understand that I can do things some weeks but then I might not be able to the next. This type of work means I don’t feel tied down.

In 2012, Rebekah’s dad Chris wrote a blog sharing his experience of discovering his daughter had a brain tumour.