"It took about two years from my first symptom to getting diagnosed – I couldn’t get anyone to listen to me. It sounds weird but when I got the diagnosis I felt kind of glad that I’d been proved right and could tell my family and friends that I was actually ill, not just making things up.
I had my first surgery pretty quickly after that and it went OK. But then I had a second operation and it caused an internal bleed and I fell into a coma. I was put on life support and was in intensive care for two months."
"When I finally woke up I really started to question what ‘reality’ is. I also found that I was now paralysed, and couldn’t speak. I’d needed a tracheotomy and was so weak that I had to be hoisted around everywhere. I couldn’t believe what had happened to me."
"Harriet from CLIC Sargent has supported me and my dad through all of my treatment. She has helped us a lot with loads of different things and was always around for a chat if I needed one. Her help has made a big difference to us.
She sorted out grants to help out me and my dad with all the extra costs we had due to me being ill, and my sickness benefit, as I obviously couldn’t work. My mum passed away from cancer when I was 18, and my dad had to give up work to care for me, so she helped sort out his Carer’s Allowance too. I was too ill to be left on my own."
"My dad is so strong. What he has been through is incredible, he’s been absolutely powerless and had the prime seat to witness how harsh life can be. What a guy, and what a man.
Sometimes of course I did get really upset about what had happened to me, and I had a lot of time on my hands to overthink things. My mates and my brothers helped. We all love The Office and Alan Partridge and quote them a lot. We know all the scripts.
When you go through something like this keeping your sense of humour is really important. What kept me going, throughout the boredom and the stress, was being able to laugh about things, and looking to the future."
"By December I’d been in hospital for four solid months without going home and it looked like I would be in at Christmas too.
More than anything else I just wanted to spend Christmas at home with my family. I talked to Harriet about it. She then went off and had a chat with my Occupational Therapist and explained how important it was to me, and eventually I made getting home for Christmas a goal during therapy, and was able to spend six hours at home on Christmas Day.
I couldn’t eat or drink anything, I still had my tracheotomy, and we didn’t have a Christmas dinner but after the year we had had, it meant a lot to be at home with my family and it meant a lot to my dad. We watched Alan Partridge, Fawlty Towers, had a laugh together."
"In February 2016 I came home for good. I was walking with a zimmer frame and when I left the hospital I felt like I should be over the moon, but actually I found it pretty challenging. But now I’m talking again, walking with a crutch, and can get out on my own a bit now. My big aim is to be able to play football again.
My advice to somebody who is at the start of what I’ve been through now is – don’t think that it’s all over, never give up hope. Life will get you down but you can get back up."
Find out more
CLIC Sargent is the UK’s leading cancer charity for children, young people and their families. Our care teams have been providing expert support across the UK for years. We fight tirelessly for young cancer patients like Alex – individually, locally and nationally. Donate online now to help us continue our vital work.