Jack is a 69 year old man who has overcome two separate significant health challenges- a stroke in 2012 and more recently, oral cancer. He has been tube fed for several years and made the choice to use homemade blended food for his nutrition. Jack dedicates countless hours volunteering in patient centered initiatives at the University Health Network in Toronto and is advocating for peer coaching to help other patients navigate the healthcare system and adjust to tube feeding. With his positive attitude and tube feeding insights, I don't think there could be a better person for that role. Thank you so much, Jack, for contributing this guest post on my blog.
Jack's Tube Feeding Story
I am tube fed as a result of late effects from throat cancer treatments four years ago. Everything goes straight into my lungs should I swallow food, liquid and my own saliva. Once my cancer treatment was finished, I was transitioned from the Princess Margaret Cancer Centre (Toronto) back into the community as an outpatient. There was a limited patient oriented discharge strategy. It became apparent that we, my family and I, were on our own for tube feeding.
The good news is that throughout treatment we were given a number of brochures and attended classes to learn now to manage treatment side effects and lifestyle changes. I also went to two “Get Back On Track” classes 12 weeks post treatments, to assist in the transition. The class was great for camaraderie with other people who had been through cancer treatment and there was a lot of good information disseminated about late effects, services to support us outside the Health network such as Wellspring, a support network of cancer survivors, exercise programs, meditation classes etc…. There was a psychologist's presentation as well as a dietitian's presentation. All good information except for those of us on feeding tubes.
Blended Food vs Tube Feeding Formula
The dietician's perspective and directive was that only formulae such as Boost and Ensure should be used for tube feeding. I was the outlier in this group because I had purchased a book, Complete Tube Feeding, Everything you need to know about tubefeeding, tube nutrition and blended diets, authored by Eric Aadhaar O'Gormon. So, I knew that blended food was also an option. At that point I had a G tube with a “pigtail” connection to my stomach. Inconvenient and prone to blockages.
I must say that of those of us on feeding tubes, 99% would transition back to eating orally. Post treatment, I had an speech-language pathologist appointment to assess my swallowing ability. This is when it was determined that I was unable to swallow without all the liquid draining into my lungs, causing violent aspiration. It was determined that my epiglottis was destroyed. I spent about twenty minutes digesting this information. It took me days to absorb and process this through the 4 A’s: Awareness, Anxiety/Anger, Acceptance and Action. I must say I spent some time in Anxiety to the point I went to the cancer psychologist at Princess Margaret Cancer Centre.
My Feeding Tube
In the "Action" phase we began researching alternatives to the G tube pigtail connection. We found a medical device manufacturer in Ohio that advertised low profile feeding tubes. Unfortunately they do not have a licence to sell in Canada. Through further research I found a manufacturer, Halyard (now Avanos), that distributes the MIC-KEY button low profile feeding tube. Further inquiry and lobbying for a MIC-KEY resulted in me getting my first "low profile" MIC-KEY, a 14 French diameter size.
Over the past two and a half years and six replacement procedures, I now have a very comfortable low profile G tube that is 20 French in diameter. It's a fire hose compared to my first G tube. I now change my own MIC-KEY tube every six months. I am able to do this myself after reading the manual and conversing with a nurse practitioner at Toronto General Hospital.
Adjusting to Life with a Feeding Tube
It took me three years to begin to feel "normal" and to be at ease with my new normal. I have set up a workstation at home and keep a daily journal where I make notes of my food, medication and exercise. I keep sleep, exercise and volunteer schedules. I am the chief cook in my family because I always loved to cook. We eat more healthy than we have in years, mostly organic with a minimum of red meat preferring fish chicken, vegetables and fruit. I also add turmeric, ground pepper and ginger root to all my blended foods. Once a day I add collagen to one blended meal.
At this point I have to interject that I had a stroke in 2012. It was the best and worst event I had experienced in my life. I say this because I found my humanity. I was a runner, paddler, cyclist, swimmer and all around athlete with unbridled energy and an ego as big as the all outdoors. This had been my lifestyle from as early as I could remember. My job fed this attitude, always competitive, always on. I had been a trader on two stock exchanges and finished my work career as a corporate sales manager.
My saving grace is I am married to my soulmate and she tempers my personality. Paula is the kindest person outside of my mom that I have ever met. When I had my stroke I had to relearn how to use the left side of my body. I also learned that the best positive recovery includes being socially connected with people, as well as committing 100% to therapy and exercise. Two months as an in-patient and six months as an out-patient at Toronto Rehabilitation gave me a great foundation to succeed. My experience with stroke recovery set me up to manage my cancer journey to the best possible outcome.
Advocating for Patients
I am part of the Patient Partnership Program at the University Health Network [UHN] which includes Princess Margaret Cancer Centre, Toronto General, Toronto Western Hospitals, Toronto Rehabilitation Institute and the Michener Education Institute. I cannot stress enough how satisfying it is to volunteer as a patient advocate. I am a repeat customer at UHN and they saved my life twice. I sit on five committees and one short term initiative as well as being active with the Princess Margaret Cancer Centre run/walk to conquer cancer program.
Living Life to the Fullest
My lifestyle is rich.
I swim using a training snorkel with a one way valve which allows me to swim without fear of aspirating water when I turn my face mid-stroke. I can pursue my passion for swimming three to four times per week. I use trek poles to walk 5 to 8 kms 5 days per week. The trek poles were originally to assist me after my stroke, now they're for fitness. I cycle throughout the spring, summer and autumn, practise tai chi 3 times per week and weight train 3 times per week.
Blended Food for Tube Feeding
I manage my daily tube feeding intake based upon my energy needs. One meal will include a two egg omelet with base ingredients, baby spinach, 1/2 avocado, turmeric, ginger, pepper, collagen, fried tomato, homemade toasted corn tortilla and water. Second meal will be a carbohydrate meal: steel cut oats, peanuts, raisins, 90% cocoa chocolate, unsweetened coconut, chia seeds, cinnamon, fruit, plain greek 3% yogurt, water.
I eat five times a day with portions around 650 ml to 750 ml. I have two to three cups of fair trade organic coffee per day. Twice a week I indulge myself with hot chocolate.
I 'eat' everywhere. I am a cheap dinner guest because I bring my own food. When at restaurants I usually order a takeaway meal to blend. I frequent coffee shops across the city while on "field trips" with friends. I stay away from processed sugar aside from the occasional blend of carrot birthday cake with orange juice.
Tube feeding, while devastating news at the time of diagnosis, has been very positive. We have lots of humorous moments with an occasional frustration.
"Tube feeding hasn't slowed me down, it has freed me."
Life is good.
If you'd like to connect with Jack, send him an email: firstname.lastname@example.org
If you'd like to share your tube feeding story, contact Claire: email@example.com