‘You have to do what makes your heart sing.”
That’s what Kathy Higgins, from Ballydevitt, near Donegal town, believes.
A keen organic gardener and Donegal Dragon boat paddler she finds that, due to the fatigue that has followed her surgery, she has to be selective about what she does.
“I won’t do it unless I know that I can achieve it,” she says, “because otherwise it’s a complete waste of energy. When you have fatigue, you don’t want to waste that energy.”
However, eight years on from surgery for her cystic acoustic neuroma, she is in a good place.
“There is, of course, anxiety, about a regrowth (of the tumour) and I have to be careful and take things slowly,” she says, “but little by little I’m doing things.”
She recently did a certificate in organic horticulture and finds gardening very therapeutic.
“You’re interacting with nature and that’s a very beautiful thing – I was always an outdoor person,” she says.
Prior to 2015, Kathy certainly was. As an education officer with the National Parks and Wildlife Service (NPWS), with a degree in zoology under her belt, her job then was with the NPWS in Glendalough National Park where she did mountain guide work and helped to educate schoolgoers about wildlife conservation.
“I was in my 30s and I had a lot of headaches, sometimes jabbing pains in the left side of my head and I noticed that if I stood up quickly, I’d be dizzy,” she says.
“My hearing was going too and I had tinnitus and I knew I was slowing down and couldn’t remember facts and figures like I used to but I was brushing a lot of it off thinking I had sinus infections and was overtired.”
When she finally consulted her GP, she was prescribed rest and anxiety medication, but after going home to Donegal for a break her symptoms got worse. A referral to an Ear, Nose and Throat (ENT) consultant and an MRI scan followed to investigate her hearing loss.
“I had noticed the hearing loss in my early 30s because I used to switch my phone to my right ear so that I could hear better,” she says. “Before I had the MRI, I thought ‘worst case scenario it’s a perforated eardrum’ and that’s why I’m getting so much pain, infection and fatigue.”
The results came as a shock – and a relief, in some ways. Kathy was diagnosed with a acoustic neuroma, a benign (not cancerous) tumour that grows along the nerve used for hearing and balance.
“The doctor said ‘the bad news is that we’ve found a growth and the good news is that there aren’t multiple tumours’.
“The minute she said tumour I thought ‘oh my God this is serious’ but I remember afterwards feeling relieved that I now knew what was wrong. I had thought I was going insane.
“When you’re trying to keep going like I was you’re in a state of survival, self-preservation. Because of the nature of my job I was always performing in front of people so there wasn’t any space for illness. I knew then that my brain just hadn’t been functioning properly.
“Even walking and talking was affected. It was like my brain had been searching for words sometimes.”
While immediate surgery was suggested because of the size of the tumour, Kathy didn’t feel ready for that.
“Radiation would have been an option if it had been smaller. It was a benign tumour, though, thank God. It wasn’t cancer.”
Kathy went on to try alternative treatments first because of the fear of side effects.
“I was told about the risk of losing my hearing in that ear permanently and my balance also which was a big deal for me as an outdoor person. There was the fear of having facial paralysis on that side too.”
Kathy then consulted herbalists and homeopaths and a cranio-therapist and switched to a completely organic diet.
“I was getting good results in the regular MRIs, but surgery was still being advised.”
Soon after that, however, Kathy went on to experience facial numbness and became bed bound.
“Whenever I tried to sit up in the bed, my head would collapse over to the side and I knew because I had done a lot of research on the type of tumour I had, that the next stages could be the collapse of a part of the brain and perhaps stroke and sudden death,” she says.
“I knew there was no other option then. I wanted to live so I agreed to the surgery which took place six weeks later.”
While Kathy still finds the facial paralysis on her left side challenging she is now doing well and believes that her positive attitude, which has developed over time, is helping her a lot.
“I decided this year that you have to keep living, you have to keep moving forward,” she says.
“For me after the brain surgery I was so glad to be alive. You just have to start life over again. Everything has slowed down quite a bit but the fatigue isn’t as bad as it was. Your body wants to heal and I wanted to live. That’s what carried me through and everything else was just a blessing.”
Growing her own vegetables has helped her achieve sovereignty over what she eats and keeps her in touch with nature too.
“It’s very important to me in terms of my health, but also it brought me back again to that connection I had with nature before I had brain surgery.
“I’m getting my hands into the soil and interacting again with plants and wind and the sun, those things you need to learn about so you position your crops in the best site possible. While I take things slowly, I just have to work with it.”
The Donegal Dragons, set up by cancer survivors, are very important to Kathy. She used to watch the followers of this ancient Chinese water sport off the coast.
“I’d see them paddling out, a dragon head and tail on the boat, 18 people paddling in tandem and the ceremonial drum at the front beating time and it was magical and now, I do it. It’s a beautiful experience,” she says.
Kathy has found support group meetings organised by Brain Tumour Ireland very useful also and she advises anyone experiencing symptoms to get them checked out.
“Don’t do what I did for years and muster on,” she says. “When you know what the problem is then you can start working towards healing. Essentially your body wants to heal. It’s always trying to come back into balance.”
While it can be shocking to get a diagnosis like she did, she also advises educating yourself about your illness and setting your life up so that you have all your needs met in terms of support.
“You get to the stage, over time, where you come back into yourself. There is a period of grieving as well, of course. I couldn’t express my emotions so I wrote them down all through my recovery. Keeping a journal is a good idea. To be able to cry is good as well.
“I’d also advise being selective about who you open up to because you are in a very vulnerable place. Not everyone is going to have empathy or sympathy. You also have to prioritise and learn how to receive support yourself.”
Looking back, Kathy doesn’t think that she would want to live the way she lived before her diagnosis.
“I was hyperactive, I had a lot of projects going on in my head at the time. I am much more content now, more refined and can express my emotions much better,” she says.
Symptoms of acoustic neuromas
Acoustic neuromas tend to affect adults aged 30 to 60 and usually have no obvious cause, although a small number of cases are the result of a genetic condition called neurofibromatosis type 2.
An acoustic neuroma may not cause any obvious symptoms at first. Any symptoms tend to develop gradually and often include:
• Hearing loss that usually only affects one ear.
• Hearing sounds that come from inside the body (tinnitus).
• The sensation that you’re moving or spinning (vertigo).
• A large acoustic neuroma can also sometimes cause:
• Persistent headaches.
• Temporary blurring or double vision.
• Numbness, pain or weakness on one side of the face.
• Problems with limb co-ordination on one side of the body.
• Voice changes or difficulty swallowing.
Brain Tumour Ireland, a registered charity, was founded in 2012 and offers support groups for those with brain tumours and their carers. A new online support group for parents was launched this month.
Brain Tumour Ireland, 4 Carmichael Centre, Brunswick Street North, D07 RHA8.
firstname.lastname@example.org 085 721 9000 (Monday to Thursday).