My brain tumour came back five times in just one year - but I am living a full life

Caroline Kane was diagnosed with a brain tumour as a child and has endured numerous hospitalisations over the years. She’s living life to the full and tells COLETTE SHERIDAN about her work and plans to marry this year
My brain tumour came back five times in just one year - but I am living a full life
Caroline Kane who a vision-depleting brain tumour since she was a child. Picture Dan Linehan

AN accident at the age of ten led to the discovery of Caroline Kane’s brain tumour, which has affected her eyesight and has resulted in a number of hospitalisations.

Now aged 43, she is looking forward to getting married later this year and moving to Kildare. She lives “as normal a life as possible,” working as a special needs assistant in a school in Waterford, where she’s from.

Caroline is chairperson of the Cork Brain Tumour Support Group which she helped set up in 2002. She is also on the committee of Brain Tumour Ireland, which recently ran a wellness day at the Ennismore Retreat Centre in Cork.

“Before I was diagnosed with a brain tumour, I wasn’t having any symptoms. I just fell and hit my head off the kerb,” she said. “I was bleeding and needed stitches so I was brought to Waterford Regional Hospital.

“After getting the stitches, a precautionary skull X-ray showed up shadowing on my optic nerve. After my stitches were removed, I was brought back to hospital to have a visual field test. It showed up that I have peripheral vision loss.

“I was then sent to (the then) Cork Regional Hospital for a CAT scan. That showed up a tumour on my optic nerve. I was operated on and most of it was removed. But they couldn’t remove all of it as there was a danger that my optic nerve would be cut and I’d go blind.”

There was an abortive attempt to put a shunt in Caroline’s affected area. The idea was that if the shunt filled up with fluid, it could be drained and there would have been no need for an operation.

“But unfortunately, I rejected the shunt. My scars got infected and I ended up having seizures so the shunt had to be taken out.”

It was discovered that there was damage to Caroline’s pituitary gland.

Caroline Kane from Waterford who a benigh but vision-depleting brain tumour since she was a child. Picture Dan Linehan
Caroline Kane from Waterford who a benigh but vision-depleting brain tumour since she was a child. Picture Dan Linehan

“That meant I wasn’t producing cortisone. I had an under-active thyroid. Cortisone is the stress hormone that helps you fight infection and stress in your body.

“I was getting sick all the time. I wasn’t growing because I wasn’t producing the growth hormone. I had to get growth hormone injections and take tablets for my thyroid. My hypothalamus was damaged also, which affects your flow of urine.”

While the young Caroline went through a lot of trauma, she is glad that her tumour was discovered.

“I could maybe have ended up blind. As a child, my peripheral vision was closing in very gradually. I didn’t realise that you’re supposed to be able to see out of the sides of your eyes.

“My mother used to say that I was always falling and bumping into things. She also noticed that when I got sick, it took me ages to get better. And she noticed that my younger brother and sister were catching up with me regarding growth. My nails weren’t growing normally either. My whole body was slowing down.

“My mother said to the doctor that something wasn’t right but he said there was nothing to worry about and pointed out to my mother that she is small.”

Caroline says her tumour is benign but, unfortunately, it can keep growing.

“At the age of 26, it came back five times in the space of one year. I had four craniotomies where the skull is opened up. My cyst had filled up. The doctors were able to drain the fluid through my nose. I ended up having 25 sessions of radiotherapy.

“How I knew my tumour was back was that my sight was be affected. The tumour has damaged my vision.”

Because of her poor vision, Caroline isn’t allowed to drive. But having never driven, she doesn’t miss it.

“I can get around. I don’t need a dog or a cane. I can work at a normal job. I was out of work for three years when the tumour came back in 2000. I was in and out of

for operations. I couldn’t have done it without the support of family and friends.” These days, Caroline suffers a lot with headaches. Cold and very hot weather affect her head as she has titanium plates in her skull. To counteract this, she wears hats.

Caroline has been living independently in her own home for the last eight years.

“A lot of people didn’t realise I have a tumour. I worked with people for years and they didn’t know. But now, the people I work with do know. I’d always let an employer know the situation.

“Because I don’t wear glasses, people don’t realise I can’t see very well. When I’m crossing the road, I rarely go without waiting for the green man. I don’t see bicycles. I have to really concentrate.” Describing her condition as stable, Caroline says she can suffer from tiredness.

“That’s ongoing. You have to listen to your body, take time out and relax when you can. I’m not the best at doing that.

“I took on my role in the Cork Brain Tumour Support Group. But I enjoy it. I’ve met some lovely people.

“Brain Tumour Ireland (www.braintumourireland.com), which was set up in 2012, approached me to join their committee. They run the wellness day in Cork and the patients really enjoy it.” The recent wellness day included a mindfulness session, herb and vegetable growing tips for nutritional cooking and music therapy.

The Cork Brain Tumour Support Group meets once a month at Cork University Hospital. It’s for patients and their families.

For more information, contact Caroline Kane at 087 1465742.

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