Loss of vision in one eye was a brain tumour symptom

Loss of vision

I started to experience a loss of sight in my left eye in January 2021. It was during lockdown so I couldn’t get an optician’s appointment straight away.

I had a field vision test where I put my head in a box, and they tested one eye at a time to see how big my field of vision was. It’s split into quarters and on my left eye I couldn’t see anything in the two outside quarters. I thought: ‘Well that’s not good’.

I was quickly referred to medical specialists and they referred me to an eye doctor. They said there were signs of a brain tumour. I had some scans in Guernsey where I live, but then I was flown to Southampton in a special plane for a further MRI and a CT scan. When they confirmed that I had a brain tumour I didn’t even react as it didn’t sink in.

Surgery

Two days later, in April 2021, I was in surgery. They went up my nose and took some of the tumour out to take the pressure off the optic nerve and to try to save my eyesight. It was a whopper of a brain tumour, about the size of an egg. 

I went home, and I wanted to give my mum a big hug, but I had to isolate for a bit. I had a couple of months at home before having my second surgery in June 2021. I had a Craniotomy where they went through the side of my head and removed more of the tumour. Unfortunately, during the operation, the nerve controlling my right eye was damage meaning that I have lost the sight in my right eye. On reflection I am okay with that as the alternative was still to have a brain tumour that was too large for radiotherapy. 

After the two operations I was referred to the oncologist. He told me that I was eligible for proton beam therapy treatment as an alternative to conventional radiotherapy. My case was put forward and it was agreed at a national level that I was a suitable patient.

Peer to peer support and Teenage Cancer Trust

Before I started treatment, I got to look around the unit and I saw a special area which only teenagers and young adults can use. I also got to meet Angie, Teenage Cancer Trust’s Youth Support Coordinator who looks after people in my age range. Angie was really lovely and put me at ease straight away.

She organised social events for the young people who were having proton beam therapy. The Covid restrictions were just easing but events needed to be outside, so Angie organised a fun treasure hunt around Manchester. It was at the end of the day after people had had their treatment and it was split over two days as energy is not always your friend while you are going through proton beam therapy.

There was no pressure on anyone during the event and it was great to meet other young people who were having proton beam therapy. We had some really nice chats. Sometimes we touched on the treatment, and it was good to know that what I was feeling wasn’t unique and that other people were going through it too. We also talked about everyday things. It was great to be with other young people. 

The room used by Teenage Cancer Trust and patients my age didn’t feel like a hospital room, and it put me at ease. It was one of the nicest things about being there. 

I tried to keep visitors to a minimum to reduce the risk of getting an infection, so it was great to have Angie there to chat to. It really helped my mental health because I would have felt very isolated without her. She always checked in on me to make sure I was ok. 

We talked about treatment and how I may feel afterwards, but also about life, the universe and everything else. She was a listening ear and she made me realise that what I was feeling was ok and expected as other young people she had worked with had experienced similar emotions. She also spoke to me in plain English which was refreshing and helped me to understand some of the technical aspects of my treatment. We usually had a puzzle on the go while we chatted, and it was a nice distraction. 

Angie also introduced me to a therapist who also helped my mental health. Angie helped my mum too. It must be the worst thing a parent has to go through, and Angie was there to listen to mum and offer advice. 

Back to studying

I’ve finished my treatment and I’ve returned to university continuing to study Archaeology, and the department at the University of Reading have been fantastic helping me to return to study. I like being able to tell the story, so I want to work in museums, in schools and perhaps even on TV.

Close relationship with the Scouts

I have a close affiliation with the Bailiwick’s 4th Air Scouts, where I attended Beavers, Cubs and Scouts, before taking on a Leadership Role.  

I’ve always loved being in the Scouts and during my cancer treatment it gave me something to do that I was good at. When you have a brain tumour you are told to relax and just focus on getting better, so I couldn’t do a lot of really active things. There’s only so much Netflix and Disney+ that you can watch though and Scouts gave me something to do and something to look forward to. It got me out of the house. 

The Leaders at the 4th made adjustments for me and I am grateful for the Scouts’ understanding. They treated me normally, despite the fact I couldn’t get involved with the more enthusiastic ball games. 

I got a phone call to say that I was nominated for the Cornwell Scout Badge. It is awarded to those under 25 years of age who have demonstrated great heroism or pre-eminently high character and devotion to duty coupled with great courage and endurance. 

It wasn’t something I expected, and it took me by surprise. I wasn’t doing it for recognition; I was just doing it because I loved it. To be told that you are doing a great job, and you are nominated for one of the rarest awards in Scouting is quite something, but to win it was incredible. I received the award in March 2023 at Windsor Castle, and I met Chief Scout Bear Grylls, who was great. I’m also part of the 73rd Reading (Park) Scout Group while at university who have also been great helping me to return.