(Previously posted on March 11, 2019 by rdavies)
Click on this link http://www.noquitinme.ca/downloads/ to see a brochure that highlights compelling testimonials from a wide range of patients and professionals.
John Kuby is a 68 year-old healthy sports guy who unexpectedly ran into a tongue cancer diagnosis while checking out his nasal problems. His book about adapting to and surviving this cancer is a tell-all, gutsy synthesis of 80+ blog posts which track his amazing 2-year process. Along the way, the reader gains innumerable insights into what John describes as a story “about recovery, strength, endurance, and hope.” The book is also an easy read and has its fair share of humor and lightness.
John, himself, best summarizes his diverse physical issues at one point in this way: “weight loss, strength loss, exhaustion, pain, swallowing problems, loss of appetite, tastebud changes, dry mouth, exhaustion, pain, mucus management issues, mouth sores, foul tastes, nausea, vomiting, burning sensations, constipation, inability to talk, facial changes, turkey neck, sleep deprivation, fear, memory loss, brain fog, and concentration problems.” All of these would overwhelm many of us, but John determinedly toughs them all out.
Simply regaining the ability to eat and drink becomes a major chore and feat as even sweets and favorite foods become unpalatable and disagreeable. Fatigue is another obstacle with John feeling wasted for long, recurring periods of time. Fortunately, he remains an avid exerciser who stays active via walking, yoga, resistance training, kayaking, mountain biking, snowboarding, and even surfing which he also takes up.
There are many other aspects to his treatment including dealing with ongoing dental /mouth problems such as thrush and his failure, at first, to follow his dentist’s advice. He comes to realize he has ignored his teeth and mouth care, eventually recovering his recommended dental regimen. There is a similar setback when he tries to come off morphine cold turkey, and he has to learn to reduce the drug more gradually to avoid its serious ill effects. John’s psychological adjustments are also as important as the physical challenges and he discusses the many ups and downs he goes through mood-wise at various stages.
The book is laid out in chronological order and follows the process structure of the original blog posts. So it starts with John’s fateful doctor appointment, followed by the choice of treatment that he has to select from a few possibilities. Then he starts his blog, meets with his family, sells his business, and retires to meet the distracting challenges head-on. Gradually, John again starts eating, drinking, talking, swimming, and resuming a physically active life, is pronounced cancer-free, goes snowboarding ,and learns to surf. The book ends with his recovery and there is a nice overview chart summarizing the key events of his 2-year odyssey.
His wife Linda is very instrumental in assisting John’s recovery. She provides periodic Caregiver Notes at the ends of sections to provide another helpful viewpoint on what John and she went through as a couple and on how her roles changed, so that the reader gains many insights into how extremely difficult it is to look after a cancer patient. (Must reading for anyone with cancer and their ‘buddies’.) In particular, the reader gets to see the inevitable communication problems especially when John can’t talk much. Linda also goes into her many adjustments to maintain their relationship and the couple also both touch on what happens to sex for cancer couples.
There are several memorable scenes described vividly in detail such as the episode when the couple go kayaking on the North Saskatchewan River in their then-home city of Edmonton. There are also many others who help with John’s treatment and recovery including his family and friends, Gary Harvey (who had tongue cancer before John), a herbalist, a relationship coach, a speech therapist, and many doctors.
Despite its graphicness and viceralness, John’s book is truly positive and heartening in tone. Although it may seem like a harsh read on the surface, John’s determination makes you want to continue reading always. The reader identifies easily with John’s fearlessness and begins to pull for him early on in the narrative.
Not to be forgotten too, are the numerous tips and advice to other cancer patients and their caregivers; comparable experiences by other contacts are mentioned, too.
In the end, John leaves you buoyed with final thoughts about his process and what he learned. John is now in his 70s and has, happily-endingly, retired to idyllic Vancouver Island. If you are more curious about John’s process and character, I highly recommend his original blog (noquitinme.ca) with its candid photos taken by his son recording his physical changes and even later movies of him snowboarding and surfing during his recovery period.
–Richard Davies (Edmonton)
(By way of disclosure/context, John is an acquaintance from our shared 1964-66 Silver Height Collegiate, Winnipeg days. He also lived close to me on Wallasey Street there.)