Because of Teenage Cancer Trust, I realised that I wasn't alone
Egon was diagnosed with a brain tumour in 2017, and has since had to have six brain operations, as well as radiotherapy and chemo. He says meeting other young people with cancer has made all the difference during his treatment.
I was working full-time in a busy hotel, so I put it down to tiredness at first. But then I got a lot of severe migraine symptoms – every time I laid down I would vomit, then eventually my leg and arm wouldn’t stop shaking and I couldn’t even talk properly or get out of bed.
My brother Kako, who I live with, called an ambulance. Doctors found that I had water on the brain (hydrocephalus) and a tumour.
Since then I’ve had to have six brain operations, radiotherapy and chemo. After my first major operation I was really unwell – I had physio sessions to relearn how to walk and it took a long time to recover.
What really helped during treatment was meeting other young people with cancer. Ella, the Youth Support Coordinator from Teenage Cancer Trust, got us together for meetings and days out. She’s like an angel!
When you meet other young people with cancer it’s amazing – even though you’ve just met, you make a connection. I’ve met wonderful people on this journey who inspire me, and made really good friends.
I’ve just finished my sixth chemo cycle and next month (September 2020), I’ll have a scan to see what’s next. Things can be uncertain at times and it demands a lot from me – I think I’ve kind of got used to being resilient.
I’ve had to be really careful and stay at home as much as possible during the pandemic, especially as chemo lowers your immune system, but because of all the chemo I’ve been really tired so lockdown hasn’t been too bad.
My brother has been amazing at looking after me and doing all the things that are more risky for me, like going shopping. And I’ve spent a lot of time watching Disney+! All through my life Disney films have given me a lot of positive energy, and have been a magic escape.
Working with Teenage Cancer Trust on my film has been amazing, a real collaboration. Some of it is like a rollercoaster, an explosion of emotions. It shows the lows of cancer for me, from when I couldn’t speak or move and was hallucinating, and the highs too, like when I got to ring the end of treatment bell for the first time and danced with all the nurses. When my parents watched it they cried, and said it was so beautiful and inspiring.
Cancer treatment is not just about what you have to take, but how you find the way to monitor your mental health. And it’s such support that shows how important Teenage Cancer Trust is. The cure starts from the moment we believe in it, and with support like this, things are definitely directed in a more positive way.
My message to other people with cancer is that everything you go through during treatment is just a phase. Live in the present, and like Dory says in Finding Nemo, just keep swimming.