If it isn’t hard enough, Christmas is a particularly difficult time of year for those receiving Head and Neck cancer treatment, or experiencing the after effects of treatment. As we march towards Christmas take some time to think how each of those Christmas lunches have progressed or stayed the same over the years since treatment for you.
How do you go about eating after Head and Neck cancer?
Depending on what you have had removed, radiated, and generally tampered with to rid you of cancer will largely play a part on your food life thereafter. Altered eating affects us in several ways; psychologically, cognitively, and emotionally.
I could never quite put my finger on what I was grieving during my HNC journey. I had a Gastrostomy tube for over a year (PEG), I started to lose connection with all my food. There was a distinct loss of pleasure in food and very much an increased effort in preparing (or not as the case maybe) that became a part of my normal day life. Once I had tackled the loss of food connection then I tackled planning and preparation of food. What to cook, how to cook it and how much to cook.
As a foodie, my overseas holiday of choice was based on the food of the country. My new altered eating status produced a profound sense of loss of pleasure, to which frustration, stress and sadness was soon added. I had been living overseas and came home for treatment just before COVID in 2019. Bottled artificial formula was keeping me alive. In body only. I was not shopping for food, cooking, or eating anything. I was also living on my own and for part of the journey my elderly mother.
For someone who's life had been food, wine, events, and travel this was all a very rude shock.
I didn't know it at the time, but I was missing the positive social interactions that are associated with people eating together. Food is very much central to human relationships. I am or “was” a very social person. I could see that slowly slipping away and I have lost “friends” because of it.
From a sociological viewpoint, eating together or shared eating promotes wellbeing, health, and social communion.
I had gone from Saigon (HCMC) one of the world's busiest cities to eating and living solo in a matter of weeks.
Food in its essence is a form of social integration and as social beings, helps social cohesion and identifies us culturally.
This sociological viewpoint has a name. In fact, there are numerous levels but for simplicity I’ll refer to it as domestic commensality - that is, eating with family & friends. i.e., Breaking Bread.
For me and many others, eating has lost its social dimension entirely and had become a purely private exercise. You must practice “mindful eating” and not in the new age guru way, but in paying attention to the texture in your mouth, deliberately manage the act of swallowing, being careful not to talk, breathe and socially engage whilst you are doing so. You are physically unable to join in conversation because you need to concentrate fully on the mechanism of chew and swallow.
Domestic commensality was the reason for my grief and became the driving force behind how I was planning to help hundreds of other people suffering the same plight around the world.
What happens after Head and Neck cancer treatment? What’s the after-care plan ?
According to Dr. Duika Burgess Watson (Altered Eating Research Network) the framework is still in production and not been published yet. I am assured research and productivity is ongoing and for patients that is good news.
In the meantime, from a patient’s perspective the questions I asked myself and, built a learning program to help others, included:
- Are there choices with food?
- Is there any progress after radiation, surgery?
- Do your relationships suffer?
- What’s my food future going to look like?
Eating and calories are only part of the problem. Social context is important, there needs to be a greater focus on real food that can be shared. What happens after the artificial food journey has finished, or when you are 3-5 years post treatment and life needs to return to some normality? I developed a program to help others on this journey. Answered the questions I asked myself and set about creating my BEST food life after Head and Neck cancer treatment.
Specific Diets and commensality - how do we bridge the gap between Head and Neck cancer treatment patients and others? There are "free from products" for dietary requirements like Coeliac that now offer or encourages commensality in that people can share the same meals.
How can we bridge this gap to be more socially inclusive of people suffering with dysphagia outside of aged care settings?
It’s a lonely existence not eating the same food as everyone else, its’ lonely for you the sufferer and distressing for family, carers, and friends.
The after effects of Head and Neck cancer treatment are long reaching. Food is so ingrained in every part of our life. How does one go on first “dates” again where sharing a first meal or drink is often the first stage of getting to know someone. Attending weddings, cultural and religious events. Celebratory events become dreaded. You can’t eat, talk and breathe at the same time and if you are clearing your throat or spitting up mucous it’s not socially appropriate or inclusive.
I believe that part of Head and Neck cancer treatment regime needs to include addressing this ‘commensality’ issue and how patients can get back to breaking bread for a better quality of life, for the practice to become more patient focused than disease focused.
The aftereffects are so much more than chew and swallow. In an attempt to raise this issue, I will continue to be the poster girl for the no feeding tube movement and develop strategies to help others live their BEST food life following Head and Neck treatment.
(Reference) 1: Burges Watson DL, Lewis S, Bryant V, Patterson J, Kelly C, Edwards-Stuart K, Deary V (2018) Altered eating: a framework for assessment and intervention, BMC Nutrition, 4: 14 DOI 10.1186/s40795-018-0221-3.
About the author Yvonne McClaren
Founder Coach & Author
Keynote Speaker, Entrepreneur, Real Food Advocate, orchestrator of commensality & the no feeding tube movement.
Helping head & neck cancer treatment patients live their BEST food Life. I’m the food curator for Dysphagia and provide the culinary support between your dietitian and kitchen. I developed and coach using the Mind Food Body Programme. A programme designed to assist HNC patients transition off their PEG feeding tube and back to oral eating.
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Oracle Cancer Trust is a registered charity in England and Wales (1142037). A company limited by guarantee. Registered company in England and Wales (7125497). Registered address: 80 Coombe Road, New Malden KT3 4QS