Meet Freya, diagnosed with a brain tumour, aged 11

Meet Freya, diagnosed with a brain tumour, aged 11

Hi, I’m Freya and back in 2012 I was just a ‘normal’ 11-year-old. I had a big group of friends and I was really into sports. In fact, I had just been picked by the school to be their Olympic ambassador.

You could say that everything was going well, but a couple of weeks before I was due to start my SATs, I started to get excruciating headaches with bursts of sickness.

Over the next few weeks, my mum and I went to the doctors on multiple occasions and were sent home with a variety of diagnoses - puberty, exam stress or migraines. The headaches weren’t getting any better and eventually my GP suggested getting my eyes checked.

The optician could see swelling at the back of my eyes too. Neither my mum or I had any idea how serious the problem was. He arranged an immediate referral to our local hospital, and they could also see the swelling. Alarm bells started ringing!

Tests and a scan followed, and I was looked after by a play specialist while my mum and dad were given the news that I had been diagnosed with a stage 4 Brain Tumour (Medulloblastoma).

When I came back into the room, I just remember seeing both my mum and dad in tears. They told me that I had a nasty lump in my head, and I needed to go to St George’s Hospital in London immediately. It was an emergency and I had to go by ambulance. As a naïve 11-year-old a trip on blue lights all the way to London sounded like a lot of fun. I was unaware of how drastically my life would change after this day.

Within 24 hours I’d had successful emergency surgery to remove the tumour. I spent 23 days in hospital, had another brain operation to fit a shunt, and recovered from an infection before I was allowed home for a short break before starting treatment at the Royal Marsden.

What followed was six weeks of radiotherapy every day, and chemotherapy once a week. That Summer, I remember watching the street parties for the Queen’s Diamond Jubilee from my hospital window.

During the treatment I lost all my hair; suffered severe sickness leading to massive weight loss, had to be fed via a gastrostomy tube and had to have an operation on my eyes to correct damage left behind by my tumour. I missed most of the first two years of secondary school and by the time I went back my friends had moved on and I was left isolated. To make matters worse I was bullied for being different and ended up changing schools.

In September 2018 I was finally given the ‘all clear’ but I’m still living with the after effects of my cancer. I’ve been left with a neuro-processing delay, balance problems which stop me riding a bike or running, double vision and hearing loss. I self-inject a growth hormone every day and take thyroid medication to correct the damage done to me by the treatment that saved my life.

Despite all this I did well at college and I’m now working in a pre-school. My ambition is to work supporting young people going through an experience like mine.

I was diagnosed so young, that I have only recently started to understand the full life-threatening extent of my cancer diagnosis and I have found this very traumatic. I became extremely lonely and my confidence and self-esteem took a big hit, that’s where Teens Unite came in.

Over the last few years, I’ve been going to their events, ranging from Christmas balls, theatre shows and motivational events to their annual Activity Stay. Spending time with other teens who have had a similar experience to me in such a supportive and understanding environment has helped me grow and become much more confident.

I’ve built a network of special friends who just get it, and in lockdown the regular Teens Unite zoom events have been a lifeline, helping us to keep in touch and support each other.

I don’t think that it’s too much to say that Teens Unite have been instrumental in helping me rebuild my life after my illness.

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