Brain tumour ‘will never define me’

A brave Cork teenager who lives today with the lasting effects of a childhood brain tumour has called for better support systems in Ireland.

Erin Feagan, 19, was diagnosed with a brain tumour when she was just a one year old. This was the beginning of a long and difficult journey for her and her family.

Today, as a result of her battle with cancer which required multiple major surgeries, Erin’s speech and movement has been affected and she is now classified as having an acquired brain injury (ABI).

She said: “A brain tumour has taken a lot from me but it will never define me.

“My brain works in different ways, and I have accepted that and worked around that. I can’t change that.

“My speech is slurred, and I walk like a drunk person. This is called cerebellum ataxia. My tremors are never ending, much like a person with Parkinson's, and my working memory is shot to pieces.

“Do I let this stop me? That's a big no! But trying to access any assistance even on a basic level is incredible difficult in Cork or anywhere in Ireland.”

Since being discharged from the National Rehabilitation Hospital when she turned 16, Erin and her family have struggled her in Cork to get her the help she needs.

She explained: “I couldn’t sit a Leaving Cert due to no accommodations being available for what I am now labelled as: ABI. I can’t access the workplace nor even basic neurological services that might assist me.

“I am in limbo now. I want my life to have a purpose, I want to experience college and work like anyone my age.

“I find the systems set up in Ireland for survivors of childhood brain tumours to be far below the standard in Europe and that needs to change.”

“It can be soul destroying, but I try to remain strong and with the help of my parents who never give up, I hope things will change.

“My outlook on life is positive, whatever happens next will happen and I will face it, but for now my goal is to get an education and join the world outside my house,” said Erin.

Recently, Erin shared her story along with 29 other Irish teenagers who are living with or have lived with cancer in a special book launched by CanTeen Ireland, the national support group for young people between who have or had cancer.

Adding her story to the book, titled ‘Bad Times, Good Times - Teenage Cancer, Our Story’, was a difficult process for Erin but she hopes it will go some way towards helping other young people with a similar story to hers.

“It was emotional and a lot of tears were shed,” said Erin.

“Sharing my story is difficult as it brings up memories that I really don’t want to recall.

“It’s not an easy story to write because I have no memory of it, so I try my best to put the positive before the negative and focus on the end result which is no more brain tumour.

“Every journey with cancer is unique and my experience is still unfolding, not with cancer anymore, but with the neurological and physical disabilities it left me with,” she concluded.