Catherine Shanahan spoke to John Walsh, who was diagnosed with an extremely rare cancer. For years the father of three was told his struggles and successes would make a great book. When his father died he decided to write it
CONVINCED that death was imminent after weeks of blinding headaches and terrifying episodes of hyperventilating, John Walsh held it together long enough to pen a farewell letter to his mum.
“Mum, by the time you get this, I’ll be dead,” he wrote on the train journey back to his accommodation in Bremen, Germany, after medics dispatched him from hospital with a clean bill of health.
Just 23-years-old and barely a wet week in Bremen where he was working in customer services for British Airways, the young Galway man was convinced his number was up.
“I had an A4 notebook and I wrote my mother’s name and details on it and told her I would be dead by the time she read it,” he says. “It was a really traumatic experience being alone in a foreign country with no friends.” Fate however intervened in the form of a German colleague who phoned him to ask how he was. Sensing all was not well, she met him off the train where he presented her with the letter.
“I ripped out the page and said ‘Can you get this to my mother’,” he says.
Alarmed, his colleague opted for more practical action. She drove him back to the hospital “and I owe her my life”, he says.
His earlier visit to the hospital involved a reflex test and a vision test and doctors found nothing wrong. On his return visit however, and at his colleague’s insistence, he underwent an MRI. Two days later, and by now numb down his left side, he was on the operating table. Doctors removed a tumour from his brain. Confident they’d caught it all, they were nonetheless at a loss to classify it. Biopsy samples were sent to labs around the world and eventually the diagnosis came - Liponeurocytoma, an extremely rare type of tumour, first diagnosed in 1978. Of 41 cases worldwide, John reckons he’s the only one still alive.
His diagnosis was in the year 2000. “Initially it felt like I’d won the Lotto because at least I knew that I wasn’t losing my mind. Initially doctors thought I was suffering from anxiety at being away from home,” John says.
With the tumour removed and no further treatment required, John got on with his life. He returned to Ireland and in 2001 met his future wife Edel in a pub in Galway.
“We really hit it off,” he says. In 2005, and with a wedding planned for September, John went to Beaumont Hospital for an annual check-up. Having received the all-clear at four previous check-ups and with no symptoms, he wasn’t expecting bad news.
But then the call came: “You have a brain tumour.”
Anxious to get the operation out of the way before his nuptials, doctors went in to remove the tumour but found other little nodules at the base of his skull. They removed the nodules and decided on a follow-up course of radiotherapy. “They gave me a double dose the day before my wedding on September 9 so that I would be free on the day. I went to my wedding with burnt hair,” he says.
Edel and John went to Inchydoney in West Cork for their honeymoon because John was physically drained. And then they settled into married life with no major health scares until 2010.
“I was again coming to the end of the five year cycle when out of the blue, I get a crippling pain in my leg while playing tennis,” he says. Doctors believe one of the nodules travelled and rested in the base of his spine, and grew from there.
“They couldn’t take it out fully because it was attached to nerves and there were concerns that I wouldn’t be able to walk again. Basically, they weren’t sure of the implications.” John was operated on in June but a follow-up scan in October 2010 convinced doctors they needed to go back in. He was back in theatre by December and this time recovery was tougher and slower, with doctors re-opening scar tissue. It was a 10 hour operation and he had to force himself to walk again. Two months later, the decision was taken to radiate his entire back and follow-up with chemotherapy “to try and clean up anything that may have been left and to get rid of any re-growths,” John says.
Between 2011-2014 John had what he describes as “my best spell”. There were good days, foremost among them the birth of Fírinne, their first child, a beautiful little girl, on July 4, 2011. Because of the chemotherapy which can render patients sterile, conceiving Fírinne required IVF. Their son Ríain, born in August 2013, was also the result of IVF.
Barely a year after his son’s birth, John started to limp. It got progressively worse as the cancer returned to his spine. By the time he went for treatment, he couldn’t walk. Doctors opted to try him with the rather menacingly named Cyberknife, a non-invasive alternative to surgery for the treatment of tumours.
“I was one of the first to have it, it meant travelling to Dublin everyday. Radiation is 10 times the dose of traditional treatment but it hits the spot. It’s a targeted high-precision treatment and a couple of days after it, I was nearly running again,” John says.
By the end of 2014, the tumour behind the Cyberknife treatment had stopped growing but there was another further up his spine and more surgery followed in 2015. In September last year, his entire spine was subject to radiation therapy in an effort to kill hundreds of microscopic tumours. He had 28 sessions of that particular treatment. At the end of 2015/start of 2016, he underwent more Cyberknife treatment on two areas of the brain and on the spine where more spots had appeared. The outcome of those gruelling sessions is that “nothing new is growing and everything is stagnant”, John says. He’s due to undergo more chemotherapy in October.
The past year has been a tumultuous one for John - his father passed away last Christmas and that event crystallised an idea that had grown over time - the possibility of putting his experiences down on paper. “People would say “There’s a book in you” and when my father died I decided I was going to write it,” he says. Hence the launch tomorrow of Headcase, John’s story “of love, life, medical miracles and battling against the odds”.
Perhaps the greatest medical miracle was the news earlier this year that his wife, Edel, was pregnant with their third child. Saorla, now eight-months-old, was conceived, against all the odds, naturally. “It was a complete shock when we did the test. Such a surprise. But she’s the most relaxed baby on the planet. All she does is smile. She must know she’s a very special baby,” John says.
After all that life’s thrown at him, how does he stay sane? How does he remain positive living in the shadow of cancer? “I haven’t much choice,” he says. “I have a family relying on me to get out of bed every day and do the normal stuff that families do. Myself and Edel get through it with a bit of humour and we take everything from day-to-day.” Does he suffer from anxiety? “You are dealing with anxiety all of the time. I feel like someone running away from being bullied and trying to stay one step.” John, an administrator with Child and Family Agency Tusla, returned to college in 2013 to do a course on addiction and as part of it, learned about the use of Cognitive Behavioural Therapy, which he now practices to control negative thoughts.
He has other stresses, including financial. “We can’t plan for holidays, we haven’t been on holidays for a very long time. We have to plan for buying a car. When we save, it’s to pay for health costs. “ But none of that is of any real consequence when it comes to the business of simply living and seeing his kids grow. “I was there for Fírinne’s first birthday, her second, her third, her fourth, her fifth. I got to see her first day at school. Maybe I’ll get to see her Communion. Her Confirmation. Her wedding. Who knows? Like I said, you have no choice but to keep going, to keep battling away, to take every chance that you get.”
The launch of Headcase takes place tomorrow in the Galway Bay Hotel, two days ahead of John’s 40th birthday. John Lonergan, former governor of Mountjoy, will do the honours and a couple of guest appearances are on the cards.
Headcase is on sale in selected book stores and via Amazon at €14.99 and is available for download on Kindle. A contribution from the sale of each book will be donated to Cancer Care West. It can also be purchased at www.johnwalshheadcase.com. Publisher is Cork-based Orla Kelly of Orla Kelly Self Publishing.
© Irish Examiner Ltd. All rights reserved