Ryan’s story
Eye tests and referrals
“It was my parents who noticed it at first. I was complaining about headaches and my eyesight was deteriorating a little.
Luckily for me, Mum and Dad didn’t mess around when it came to the health of their children. They booked me in to see the optician the next day. I remember very clearly that someone had made a mistake and we were told there was appointment.
I was very proud of Dad that day as he made a scene and refused to leave without me being seen. Good old Dad!
An optician came out and offered to see me. She couldn’t find anything wrong with my eyes and suggested we get the headaches checked out first.
We went to our local GP and my dad explained what was going on. He gave us a letter to go to the local hospital in Romford. Someone took a look at me and said they thought I should be admitted, but they couldn’t do that for several months.
Dad went off again, and marched straight back to the GP. who gave us another letter referring us to Great Ormond Street Hospital.
Luckily, Dad was a black cab driver so getting there wasn’t a problem. I remember walking in to a ward and being asked to wait in a room with lots of toys, which was amazing. I thought we were just there to look around.
The scan
After a while we were taken down to a room with a ‘big washing machine’ which I was told could take pictures of my brain. I lay and watched the machine spinning around and listening to the buzzing. I quite enjoyed it.
But what happened next was a huge shock. I was diagnosed with a Medulloblastoma – a malignant tumour within my brain. The doctor gave the news to my mum and dad.
They told me I’d be staying in hospital but I was too busy playing a computer game to take much notice. It seemed like a big adventure to me at the time. I don’t think I even said goodbye.
Visitors and nil-by-mouth
I came out of surgery with few complications and my parents were told it was a success but I would need a lengthy period of radiotherapy once I recovered from the operation.
Mum and Dad visited as much as they could. My older brother, who was about 12 at the time, was shipped off here, there and everywhere to grandparents, aunts and uncles. My sister was only two so it was harder for Mum to visit me but even so I remember her being there a lot.
I realised recently, when I was talking to my dad about it all, how hard it hit my family. On the day I was admitted my brother asked my dad if I could die. My dad said yes, and they both broke down.
I remember asking to have the tube taken out of my nose as I found it very uncomfortable. The doctor said if I had trouble, they may have to put it back in, but once they took it out, I wiped my nose and said thanks and that was that. People were coming and going to see me, and I enjoyed the attention as often they would bring me things. My dad told me years later that one night I was apparently screaming in pain that my head was hurting. After a while he asked the doctors to do something. They apparently turned me over on my front, inserted a needle in the base of my spine and drew out some fluid and at this point I stopped screaming and fell to sleep.
Back to school
People kept coming and going: family, friends of our family. I had a big box of chocolate under my bed. I almost messed up a nil-by-mouth as I was going in for another surgery to explore if any of the tumour had broken off.
As I was only seven, I hated injections but had to have quite a few. Dad said I could have a pound for every one I had to have, which helped!
After I was discharged, I had daily visits to University College Hospital London to start my course of radiotherapy. My family came with me: Dad was there all the time as he could get in and out with his black cab; Mum a lot, Nan and Granddad sometimes.
My big brother used to run with me from the lift in the basement to the radiotherapy clinic as they put it right next to the kitchens and the smell would make me feel physically sick.
I lost big clumps of hair and was very sick but after a while I started to recover.
When I came home from hospital I got so bored in the end that I asked mum to go in to school and get some school work for me to do.
As the years went by, visits to the hospital became less frequent and I was able to lead a normal life.
My dad bought several hats for me to wear when I went back to school as my hair took a long time to grow back.
Moving on…
I went through college and got a job. I married when I was in my early 20s and my wife came to hospital appointments with me. I’d been told I might not be able to have children but within a couple of years my son Charlie turned up as a little brother to Robert, who my wife had had in a previous relationship.
I still go to the hospital about once a year but time has been good to me and I’m trying to live a normal a life as possible.
A girl called Claire
One thing sticks in my mind. A girl called Claire, who was about my age, was in the bed next to me at Great Ormond Street. We played together and my parents and hers became close. We lost contact soon after as she lived far away and we didn’t have the internet or social media in those days. But my parents found out years later that she didn’t make it. It makes you think…..
I look back and realise it was a blessing that at such a young age, I didn’t realise how seriously ill I was.
I want to use my experience to help others who’ve been affected by a brain tumour diagnosis and I’m happy to talk to anyone who wants to know more or would like to chat about it.”
Thank you to Ryan for sharing his experience.
If you’ve been affected by a brain tumour diagnosis, you can speak to someone on our support team or you can help to keep those support services running by donating here.