Surviving a brain tumour by Olivia, 18
“I’ve always been quite ‘out there’ about coming to GOSH. If my friends ever said, ‘Olivia, what’s wrong, why aren’t you in school today?’ I’d tell them, ‘I’ve got an appointment at the hospital.’ I like to be open about it.
“I first came to GOSH when I was about three years old with juvenile rheumatoid arthritis. It was actually quite a nice time of my life apart from the injections – I used to like playing with all the toys!
“The second time I came here I was seven years old. I had hydrocephalus (a build up of fluid, and as a consequence pressure, around the brain) due to a brain tumour. If you cut my head in half, and then into quarters, the lump would have been right in the centre of my brain behind my eyes.”
Tests and operations
“I can remember it all quite clearly. I was lying in bed at home and my eye went funny – I couldn’t see out of it. So my mum put a two pence coin on the bed and asked me to shut my right eye to see if I could find it. I couldn’t. She asked me to shut my left eye and find it, and I did straightaway.
“We rushed off to Moorfields Eye Hospital, London, where they found out that the optic nerve had some pressure on it, and the only pressure which the optic nerve can get is from the build up of fluid in the brain. That was when I was taken over in an ambulance to GOSH.”
“I had an MRI scan, followed by a CT scan. At first the doctors thought it was a cyst in my brain, but it turned out to be a tumour. I didn’t quite understand the danger I was in until two or three weeks later when they were preparing to operate on me.
“I had five operations in total in the space of about three or four months. The first one was to drain the fluid and relieve the pressure building behind my optic nerve. I was about two or three weeks away from going completely blind in my left eye – I still haven’t regained full vision.
“I then had two operations to see if they could take the tumour out, which they couldn’t because it was so close to the areas of the brain which store memories and control vital metabolic rhythms and movement. The fourth operation was a huge craniotomy, where they cut my head open to see if they could remove the tumour. After my fifth operation at GOSH, I started radiotherapy at the Old Middlesex Hospital. I had this five times a week over the space of about six weeks.”
Growing up and going to GOSH
“I still came for check-ups at GOSH into my teens, because, although the information on young children who survive brain tumours is growing massively, they haven’t got all of the research on it. They did know, however, that the impact of the brain injury in that area – close to the hypothalamus and pituitary, the vital post office for the body's letters (hormones) – was likely to affect my growth and physical development and possibly also my learning.
"I had to have regular blood tests and growth measurement every six to 12 months at the adolescent endocrine clinic at University College Hospital (UCH), sister hospital to GOSH, and still go to that aftercure clinic intermittently. Fortunately, I didn't need any help in this area but I was one of the lucky few. I know I have somewhere I can go back to in the future to learn new information or if I ever need help or support.
“It was never a big issue for me, being in hospital and being a teenager. The only time it actually hindered anything was on my friend’s 13th birthday party. I had my MRI scan for the beginning of it and they were going to see Spiderman – I really wanted to see the movie but I couldn’t because of the scan!
“My advice to other teenage GOSH patients – whether you need to take a day off school because of your condition, or you have to miss a fun thing because of a hospital appointment – is don’t be sad, think of it in the positive. You’re going to hospital to get better, or you’re taking the day off to make yourself feel better.”
Why I stay involved
“I’m 18 so I’m not at GOSH anymore, I’m at the UCH teenage unit where I will be cared for until I’m 25 and then I’ll move to adult health services. I still keep in touch with the hospital though, through the Young People’s Forum, the Foundation Trust Members Council and the Expert Patients Programme – a self-management programme for people who are living with a long-term health condition. I’ve also done numerous fundraising events for the charity.
“GOSH is a fantastic place. I love every inch of it. Everybody here is really kind and really helpful. All the doctors, nurses, everybody are really just lovely.
“I like to stay involved with GOSH because they saved my life, so if there’s anything I can do to improve the food, or be part of the service which creates comfier beds for the parents, or make young people’s time in hospital more enjoyable, I’d love to do it.”