Saturday 17 November 2018

'I went to the doctor for a cold sore that wouldn't heal... now I have a brain tumour and I'm paralysed on one side of my face' - Irish man (59)

John Joyce lives with an inoperable brain tumour, which is compounded by other medical issues. He tells Joy Orpen that, nonetheless, he enjoys a good quality of life thanks to the help he gets from a specialist home-care team

John Joyce. Photo: Steve Humphreys
John Joyce. Photo: Steve Humphreys

John Joyce (59) almost fainted when it was suggested that palliative care nurses help him cope with his health problems. "I can still see those three women standing there in the hospital, introducing themselves to me," he recalls. "I thought, that's it for me then. I'm gone."

Like many people, he believed palliative care was only for people in end-of-life situations. But he now knows that was incorrect. Because, these days, a care team helps him cope with the many health challenges he faces on an ongoing basis.

John grew up on a small farm in Foxford, Co Mayo, with his four younger sisters. Sadly, his father died suddenly when he was a teenager, causing him to leave school prematurely. "That was the done thing in those days," he explains.

Over the years John took care of the farm, while working in public houses. Having managed a pub in Ballina, he then moved on to the Enniscrone Golf Club. Around this time, his mother Norah's health deteriorated. So, he left the golf club to concentrate on merchandising for the likes of Guinness and the Lotto. This meant he could manage his own time, while also looking after his mother, who was diabetic.

When John wasn't busy, he would head off into the beautiful Mayo landscape to do some fishing or to walk his much-loved Labrador. "I like to be on my own," he says. "I'm not afraid of my own company, and anyway, nature makes me feel serene and spiritual."

About five years ago, John ran into health problems of his own when he got a cold sore on his lip which didn't clear up, even though he saw several doctors. Then one day, a former nurse from Australia made him promise he would get another opinion. Which he did. "Within five minutes that doctor told me it was cancerous," John says. "I didn't believe him at first, because I had never smoked and there was no history of cancer in our family. However, within days I was in Galway having a biopsy. A few days later, the diagnosis of cancer [melanoma] was confirmed. From that moment on, I was no longer John Joyce, I became John Joyce with cancer."

During the biopsy the 'sore' was removed, as well as a good deal of tissue around it. But a month later, cancer cells were discovered in the other side of John's mouth, so he had another biopsy. "They were happy at that point that it was all clear," he says.

However, six months later, the cancer was back. So, 36 sessions of radiotherapy were prescribed. "I had to wear a special mask, which had been made from a mould of my face," says John. "My head and shoulders were strapped to the bed during treatments. This was to ensure that the cancer cells, rather than healthy cells, were destroyed by the radiotherapy. The sessions weren't long, but I felt uncomfortable and worried I would choke."

John used to tell his mother Norah he was working when, he was, in fact, going to Galway, for treatment. "I was her only son," he explains, "her golden boy. She would have been devastated if she'd known I had cancer. She used to tell my sister that I was working much too hard."

Some months later, John had to face yet another round of radiotherapy when a tumour was discovered in his brain. "It's inoperable and incurable," he volunteers. "I'm now paralysed on the right side of my face, I'm blind in one eye, and deaf in one ear. I still have chemo every two weeks which keeps the tumour in check."

In the midst of this treatment, Norah departed this world. Even though John was absolutely stricken by the loss of his much-loved mother, he was not allowed to miss even one session of his crucial radiotherapy. That meant he had to travel the long, winding road from Foxford to Galway on both days of his mother's funeral. "I found that very hard," he says.

The next intervention was chemotherapy, but unfortunately one of the side effects for John was loss of appetite. "I always felt full up," he explains. When his weight dropped to seven stone, he had a PEG (percutaneous endoscopic gastrostomy) tube fitted. This delivers liquid food and medication directly to his stomach, and is still in situ and working well.

However, his medical team then discovered that John's heart had been adversely affected by the chemotherapy. It's currently pumping at about 15pc of normal function, and has to be closely monitored.

So, there is no doubt he faces definite challenges on a day-to-day basis. Once he was discharged from hospital, he spent six months with one of his sisters. That's when the idea for palliative care was mooted. Although initially shocked, he soon came to realise the benefits.

"Palliative care is not only about end-of-life. It's also about improving the quality of life," John explains. So, once a week, a member of the Mayo Roscommon Hospice palliative care team comes to his home. "We discuss what's going on in my life, particularly in regard to pain management and PEG feeding," says John. "Over the years the home-care team has become part of my family. They have given me the positive reinforcement I need to be able to move on and have a really good quality of life. I really do look forward to their visits."

Given that John has had so much to deal with, it's not surprising that he often gets asked if he feels angry about his life. And he replies: "What's the point? Just be grateful for the gifts that remain. Take it one day at a time and do the things you can do, rather than dwelling on what you can't. I can't walk far anymore, but I like to read, so I go to the library. I like messing about with computers, browsing Google, and so on. I often go to the bakery in Ballina so I can have a cup of coffee and meet people. You need to get your head around the fact that it's about the life you have now, rather than the one you had."

There's no doubt that John practises what he preaches. His facial paralysis may cause comment and reaction in public, but he doesn't give a fig. "When kids stare at me, their parents often kick them under the table. But then I wink right back at those kids - I just love their honesty."

That's so typical of this fun-loving, jovial, insightful, generous man - he makes the world a brighter place, in spite of the dark clouds.

 

The Palliative Care Research Network annual symposium takes place on November 15 at the Aisling Hotel, Dublin. See aiihpc.org

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