Even when you're sick you can have fun
MY HEALTH EXPERIENCE:ELYSHA FOLEY is 14 years old. And although she looks and sounds like most other girls of her age, she has led a completely different life to date.
When she was just four years old, the Clare girl had problems with her eyesight and a strange compulsion to sink her teeth into things. For over a year she underwent a battery of tests to try to find out what was wrong with her and, at the tender age of five, was diagnosed with a brain tumour.
She has spent the past decade fighting this crippling disease, putting up with endless tests and lengthy hospital admissions, enduring gruelling bouts of chemotherapy and several operations but has finally come out the other side as a happy, healthy teenager.
WHEN I was four, I had a problem with my vision. My left eye was getting weaker and weaker and I had to wear an eye patch and glasses. Every morning I would pick out a cartoon figure sticker, usually a Disney princess one, and Mum would put it on my patch. I hated wearing that patch as it was very uncomfortable.
I would also leave teeth marks on everything and got into trouble at school because I used to eat all the pencils and crayons and bite the corners off the desks. I even bit a girl’s arm once. The doctors later said I might have done this because of pressure in my brain but I never felt any pressure there. I felt normal.
I had a lot of tests done including Cat scans, MRIs, ECGs, kidney tests, hearing tests and lumbar punctures.
When I was five, I was diagnosed with a brain tumour on my optic nerve, at the point where the nerves cross each other, 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.
On my first day in St John’s ward in Crumlin I met my oncologist and my neurosurgeon. They were very nice, they explained about my tumour and showed me a picture of it from my MRI. It was a shiny circle in the middle of my brain. It actually looked very pretty, like a bright star in the middle of my brain.
I remember thinking that everybody was lovely – the nurses were so nice. All the kids had no hair and were very white. 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.
The minute the chemo goes into the line you can feel it burn up through your body. It stings for a while but it’s okay, as Mum says it’s good/bad medicine and you have to get sicker to get better.
I had fun when I was in hospital. We were all in the same boat. In the outside world people would stare at me. But in Crumlin we were all the same, we had no hair and we all had wonky blood counts. We would play lots of games. When we were on our chemo, which takes hours, my friends and I would run and then jump on the wheelie thingy that the chemo bag [was hanging] from and have races down the corridor. The doctors and nurses would have to jump out of our way.
There is lots of goofing around in Crumlin. It’s important to know that even when you are sick you can also have great fun.
Throughout my sickness, Mum was always with me, she never left my side. She slept in a fold-away bed beside me. At times when I was very sick she would sleep with me in the bed and hold me so tight. I liked that. It was very hard on my family when I was sick. Mum had to give up her job. Dad had to mind my brother at home and this was hard on them. I missed my brother (Gearóid) and Dad so much.
Dad is a big softie and although Mum can be a softie too, she is very calm when things go wrong. She minded me all the time; she would clean my wounds, change my dressings and make me my favourite food in the kitchen on John’s ward so I would feel like I was at home.
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 non-stop fun. We got to ride in rally cars through country roads which was terrifying but great craic. Then when we arrived back at the castle, there was a red carpet waiting for us and people asking for autographs – we were like film stars.
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 scares and that’s where Barretstown comes into its full power.
In conversation with ARLENE HARRIS
The Barretstown Big Picnic takes place on July 6th and 7th. For more information visit barretstown.org