A Galway man has written a book documenting his 16 year battle with cancer. John Walsh was first diagnosed with a tumour in his brain in the year 2000 and has undergone numerous operations and rounds of chemotherapy and radiation treatment since due to the continued presence of growths in his body. He is currently living with inoperable tumours in his brain and spine.
Mr Walsh was just 23 years of age and living and working in Germany when he first began to feel ill. He hyperventilated on three different occasions as he was admitted to hospital but doctors were unable to diagnose what was wrong. Eventually after returning to hospital with paralysis on the left side of his body it was decided to carry out an MRI which revealed bad news.
“The consultant told me I had a brain tumour and I had a 50/50 chance of living. This probably sounds strange but part of me was relieved to have finally got a diagnosis as I had been feeling ill for so long and it was very disturbing not knowing what the problem was. The mental torture was probably the worst of it. You begin to question yourself after a while. The consultant told me I would be operated on the next morning and I had a 50/50 chance of living.”
How does one take news like that on board, especially at such a young age? “You are kind of just in a trance really. It was nearly worse for my mother. She flew over but was unable to understand anyone due to the language barrier.”
Thankfully the operation went well and surgeons managed to remove the tumour. However there was major rehabilitation involved in the recovery process. “My balance was gone. I spent about three months in hospital doing intensive rehabilitation on my speech, and learning to walk again. I was told after that only 41 people in the world were ever diagnosed with this type of tumour, it is called a liponeurocytoma. As far as I know, I am the only person to have got that type of cancer to be still alive.”
John returned to Ireland and was cancer free for five years, but in February 2005 was told there was another tumour in his head. This growth was again successfully removed, but during the course of the operation surgeons found nodules of another tumour at the base of his skull and removed those also.
All was well with his health for another five years until 2010 when he got a very bad pain in his leg. He was told he had a tumour in his spine but it had travelled down his leg. “I was operated on twice in Beaumont to get the tumours out. That was a much more severe operation, it was very invasive and I felt the effects of this for a long time afterwards. In February it was decided to give me radiation and chemotherapy together to try and prevent any more growths.”
John says he is a very positive person by nature but his spirits were definitely flagging at this stage as there are only so many setbacks one can take. “I have always had a never give up type of attitude, but I was definitely getting a bit annoyed about it all. I decided to get a second opinion. I went to Sloan Kettering in New York, it is one of the most advanced cancer treatment centres in the world. I was happy to be told they would not have done anything differently. It wasn’t that I was unhappy with the treatment I was getting, it was just to put my own mind at ease.”
That round of treatment ended in February 2010 and John was cancer free until September 2014 when the familiar pain returned. “I had started to limp. I always knew the tumours were hanging over me, it was just a case of waiting for the pain to come.”
He started a treatment known as CyberKnife, which is a dose of radiation 10 times stronger than the norm, to clear the tumours. This intensive treatment also comes with major side effects. “I was placed on steroids to help with the treatment. Along with the usual tiredness, I had fairly serious mood swings, I was not myself, I was acting very erratically and emotionally all over the place and definitely very hard to live with.”
It is a never-ending cycle of treatment due to the continuous presence of cancer in his system. He had a 10 hour operation in May of last year to partially remove another spinal tumour, and in September last year 28 sessions of radiation in his spine to remove hundreds of microscopic tumours. April this year brought another setback with the discovery of a further growth in his spine which led to more CyberKnife treatment.
Throughout his 16 year illness, John has managed to live a very full life. He is married with three young daughters and holds down a full time role with the child and family agency Tusla. He is a shining example of the power of remaining positive throughout continuous adversity and has written the book to show others that you can still live a good life throughout illness.
He met his wife Edel in 2001, and it is interesting to hear how a loved one copes watching her other half go through such traumatic times. “I would describe Edel as a very strong person. She is very busy in her job which is a good thing to distract her, and I suppose in a way we know no other life now. This is our norm. As I always say to her everytime I have got medical intervention, thankfully I have got better.”
And it is also intriguing to hear about his own coping mechanisms. “I need to have a lot going on in my life to provide plenty of distraction as well. The kids provide the best distraction of all. They are five, three, and eight months and totally unaware of all that is going on. I also did a course in cognitive behaviour therapy to try to implement it in to my own thinking.”
It was a major milestone to see his oldest daughters first day of school as it was something he did not know if it could happen. “I have inoperable brain and spine tumours. They cannot be operated on because of their location. The story is not good but I try not to think about them. It was a big deal for me to be there for my oldest daughter’s first day of school, I thought I would never see it. Will I ever see her Communion, I don’t know. But the way I look at it I could see her wedding day.”
John Walsh’s book entitled Headcase, is currently on sale through Amazon and is available in all good bookshops. He says it is not a medical book but hopes it is an inspiring book. Inspiring is definitely an adjective that you would associate with this man. “I found writing the book helped me, it was therapeutic. It is to show that we must grasp every opportunity, life is short - we need to start appreciating what we have.”
+For more information, check out www.johnwalshheadcase.com