“A Deadly Intruder – My Fight Against  Brain Cancer”, Gilles and Toby Cayouette, Celestia Lwms Corp, Editions, Canada, 139 pps, paperback, 2008. ISBN 978-0-9810475-1-5. Also available in French. Please contact Janic Gorayeb, Health Information Specialist with Brain Tumour Foundation of Canada to inquire how to get a copy of this book: jgorayeb@braintumour.ca

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In 2004, 53 year old Gilles Cayouette of Montreal was diagnosed with a malignant brain tumour and given only three to four months to live. Four years later he was still alive and set about writing a book about his journey, assisted by his son Toby as co-author.

Gilles wrote the book originally for his own purposes and saw it as a gift to his family but later on he hoped that it might offer help and advice to other patients and their families. 

He regards the brain tumour as something that has invaded his body, it is an "intruder" but he is also optimistic: “I’m convinced that there is hope and that by holding the intruder at bay for many more months, researchers might have enough time to develop new treatments and/or drugs. During the past year I have realized that while fighting I can live a happy life with my wife Carol, my children, the rest of my family and friends”. This is a perfectly reasonable and common approach to adopt and provides inspiration to many people who are forcibly thrown onto a similar journey. 

For twelve to fifteen years prior to his diagnosis he would visit for an annual medical check-up but in 2004 the Doctor ordered a CT scan and he was referred urgently to the Montreal Neurological Hospital where the specialist delivered some unwelcome news. “During the next few minutes and less than one hundred words later, the rest of my life was going to change completely”, he writes. “I knew I was in trouble but not how much. I couldn’t control my emotions and started to cry … The surprise and shock was unbearable. My head felt like it would burst open. My stomach felt like it had a huge hole in it. I had to minimize the impact on my family. I immediately asked God for the strength to help me get through this situation …”.

He seizes on a plan to help establish two of his children in their life careers. Not only is it for the purpose of giving them a start in life it is also “to give me another good reason to keep on fighting”. He also asks God “for a little more time”. 

Visits by his family members, friends and colleagues before his surgery “energized” him. A visit by his family made him laugh and forget about the surgery, “they were my courage”. Gilles was fearful that the surgery might change his personality or cripple him for the rest of his life and afterwards when he woke up he began checking what he could do and was relieved to know  that he did not have major deficits but there had been some effect on his left side. 

Afterwards he has an unfortunate experience with a bad reaction to his head bandages by a salesman who steers him to the back of the store and gets him to sit down, out of sight of other customers. On the other hand, his butcher treats him as if nothing has happened and waits (for a year) until Gilles is prepared to talk about his situation.

When he is scheduled for radiation therapy he becomes apprehensive that the technicians might be off course and erase his memory “like a computer file” but he overcomes this fear. He chats with the other patients. The waiting room becomes “an unofficial, continuously changing network of hope”. He wonders if it might be possible to have a “motivator” who moves around among the patients “with the sole purpose of facilitating the generation of positive energy”.

Meanwhile, Gilles has voluntarily given up driving, not wishing to kill someone. He also asked his family not to immediately tell his father about the illness. To travel to his beloved grand prix car race he swallows his pride and is pushed in a wheelchair. His wife Carol accompanies him to interviews with the specialists and they later compare notes. 

One oncologist thinks he is too “optimistic” and when asked if he wants to know his life expectancy, Gilles answers “NO, not now”. But he is ready a short time later and while initially describing his oncologist’s words as “direct and unsympathetic” he later understands the rationale: “It would be worse if we were to be given an overly optimistic account of the situation, and then face something unexpected”.

The article by Stupp et al in the New England Journal of Medicine, reporting on the pioneering EORTC/NCIC Phase III trial which led to the new standard therapy for GBM patients, serves as a means of outlining the reality of his situation and his reduced life expectancy to his brothers and his children. 

In 2005 it appears that the chemotherapy was not working and he visits the famous Basilique Notre Dame to meet with Father Gagne to discuss the nature of death. Although he did not receive definitive answers he felt better for the discussion. While attending the SNO Conference in Montreal in 2010 this reviewer visited the Basilica and was very impressed by its interior. It is undoubtedly a place where one could contemplate fundamental questions of life and death.

Basilica Notre Dame

Gilles switches to a new protocol of temozolomide and procarbazine. A holiday and flight to the Bahamas proves a little challenging but the new protocol appears to be working. 

Challenged by a yo yo of changing expectations about his survival he concentrates more on adopting a positive approach and searches for the positive things that are happening to him. He particularly enjoys watching sunrises.

During this time he has been kept up to date about projects that are occurring in his former business and experiences satisfaction at seeing the results of his influence in their development. 

For his memory problems Gilles kept a detailed daily, weekly, and monthly schedule. He also writes many notes to himself and double-checks what he had done. He needed to type slower and divides every project into a series of achievable sub-projects and rejoices in a “small victory approach”. He was involved with the local “Network of Hope” brain tumour support group and receives strength from it but does slip into depression at one stage and later climbs out of it.

His nurse Yasmin suggested he write his story. 

In 2006 he can feel depression again coming on and Yasmin suggests he review his priorities and remove all work-related issues. He adopts this course but still struggles. What seems to be his saving mechanism is involvement in the 2007 Brain Tumour Foundation of Canada 5 kms walkathon where family, friends, former work colleagues, business associates, and even former fellow students, support his plan to participate and on the day fifteen friends arrive to accompany him. His sponsors raise $22,500.

This is the story of how one man responded to and coped with his diagnosis. Clearly his journey has been challenging but in telling the story Gilles has been frank and honest. The unique value of books like this one is that they can convey remarkable insights which can be considered by patients and their caregivers who are about to embark on a similar journey. Doctors and nurses can also benefit from these insights because it will help them to understand their patients better and they can respond more appropriately. It is highly recommended.

DS