We just had nonstop fun!

Elysha Ni Chulain is a 15-year-old secondary school student who was diagnosed with a brain tumour on her optic nerve in 2001. Here she talks about how much fun she had at the Barretstown Therapeutic Recreation Programme:

“My name is Elysha Ni Chulain. I am 15 years old. My story starts in 2001. I was four; I had a problem with my vision. My left eye was getting weaker and weaker. I had to wear an eye patch and glasses. Every morning I would pick out a cartoon figure sticker, usually a Disney princess, and Mum would put it on my patch. I kind of looked like a pirate not a princess! I hated wearing that patch. It was very uncomfortable. The glasses didn’t work either.

I used to chew on everything: tables, chairs, books. I got into trouble with the library because I ate a book once. This brings a new meaning to the phrase bookworm, lol. When I was five, I was diagnosed with a brain tumour on my optic nerve, right in the middle of my brain. It was inoperable. That means you can’t have an operation to take it away. So I had to start chemotherapy. I have spent the past decade fighting this disease, putting up with endless tests and lengthy hospital admissions, enduring many bouts of chemotherapy and several major operations.

On my first day in St John’s Ward in Crumlin, I met my oncologist and my neurosurgeon. I remember thinking that everybody was lovely – the nurses were so nice. All the kids had no hair and were very pale. I had surgery the next day to have my broviac line put in. This is a white tube that goes in to my main vein just above where my heart is. All my meds, chemo, infusions and transfusions went through this. I would like to say I was always brave and most of the time I was, but there were times when I was so ill I wanted to give up. I was just so tired but Mum would always say, “You have the best doctors, the best medicine, but you have to do your part too, you have to fight it”. She always pushed me on.

Last summer I went to Barretstown and it was brilliant. We didn’t just sit around being sick, we just had nonstop fun. I made loads of friends from different countries and even though we didn’t speak the same language, we understood each other because we have all gone through the same thing.

When I was sick I lost my confidence because I missed out on doing normal things. My time in Barretstown gave that back to me. I got to do things I never thought I would be able to do. I felt more at ease, I was able to open up, to let go and just have fun. Every night I went to bed with a smile on my face, exhausted from doing lots of crazy, fun things during the day.

Having cancer turned out to be a really good thing as I got to go to Barretstown and will return there when I’m older to work as a Cara and give back what it gave me – smiles. As my mum said, the chemo may deal with the physicality of cancer, but cancer leaves very deep, hidden scars and that’s where Barretstown comes into its full power.”

Elysha (15), living with brain tumour, attending Barretstown Therapeutic Recreation Programme, Ireland