Hard to Swallow - Living with Dysphagia

Cancer exited my body at the same time dysphagia entered it. 

I’m grateful for this opportunity to share some of my experiences on this challenging path with a condition I knew nothing about until I had it. 

I, a 59-year-old man in apparently good health, arrived at this place on June 5th, 2021, after a diagnosis of oropharyngeal cancer. A 3cm tumour, several lymph nodes and base of tongue were removed in an operation July 30th.  The base of tongue is a terribly unheralded body part I’ve since learned. I miss it dearly. Six weeks of brutal but effective head and neck radiation followed which created its own set of problems and physical setbacks. 

The broad definition for dysphagia is difficulty swallowing. What it means to me is coughing, hacking, watering eyes and the runny nose when I hit the inevitable rough patch with food. Those are the physical manifestations but what I find most challenging and the hardest to deal with is daily mental fatigue of having dysphagia. Dysphagia has forced me to reframe my relationship with food. Eating is no longer an act of pleasure but simply a necessary evil, a fuelling up so I can get on with my day. I have a fear of eating in public, a fear of choking, a fear of embarrassment. 

The three worst times of my day, every day are breakfast, lunch, and dinner.  It’s gotten better over time, but I still dread having the play roulette of “what five safe foods can I have today?” or “can I have Tik Tok ramen again?” or “am I pushing my luck on the third consecutive day?”  It’s tiring, and there are times when I lose interest but know I have to get something down.  My inspirational friend, who had his stomach removed a year before my surgery, told me one day that “eating is now my job and like any job it has to get done”.    

Authors note: Tik Tok ramen, which I didn’t know was a thing, is a surprisingly tasty option, and it slides down with a little assist from fluid. 

I’m sometimes asked what the worst part of this is, and I usually answer with “the isolation”.    

I eat alone on the rare occasion when I can muster the courage to dine outside the home. When I am at home I eat separately from my friend because I don’t want her to feel self-conscious about how fast she eats (she doesn’t) and how plodding and cautious I am picking at my meal. I also don’t want her to her see me rush to the sink nearby when a not quite small enough piece of chicken gets lodged somewhere in my now imperfect swallowing “infrastructure”. It’s isolating because I can no longer join a friend for a quick bite or take a business meeting over a meal.  

Each mouthful of oatmeal, well soaked in milk to ensure maximum “slippage”, must be carefully considered.  I can no longer just carelessly put something to my mouth without considering how, let alone if, I can safely get the morsal where it needs to go. 

Once I explain my condition, people are understanding and kind and go to great lengths to be reassuring but it’s hard to get by my frustration. 

One morning, before he clamped my mask in place and slid me inside the tube for my daily dose of radiation, the radiation technician offered sage advice: “Water will become your best friend”. Those of us with dysphagia don’t go far without our trusty water bottles or scouting out sources of H2O in our surroundings. If you are in a restaurant, always ask for a couple of glasses of water, and make your tablemates keep theirs readily available for you. 

There is lots of information and medical advice available, but do yourself a favour and don’t Google topics with headings like “what foods make dysphagia worse?’. If I had done this in the early days, I don’t think I could have made the necessary mental leap to try eating properly, let alone regularly. 

The tumour may be gone for good. The yearly exams have been good, but I won’t get clearance for another three years. What I won’t ever be cleared of is dysphagia. It’s my new normal, a condition I manage. And some days are better than others, but every day requires planning, self-awareness about how my body is feeling, and a healthy dollop of forgiveness when I do struggle. I’ll admit that I’ve sat in my car and wept after ordering a bag of onion rings, only to run short of the soda I desperately needed to wash everything down. Note to self: ration your root beer, Dave! 

I’ve taken part in research studies, answered questionnaires from smart people in the field of head and neck cancers and its related maladies. I’ve worked with speech-language pathologists and continue to do physical rehabilitation to rebuild my body and mind. 

Before I was sick, I knew, or thought I did, about the powerful sharing of experiences one gets by telling their story to another person walking the same path. At a recent workout at Alberta Cancer Exercise, I was asked if I could chat with a man who’d had the same cancer, same surgery. After comparing our respective neck scars and other related wounds we shifted to sharing recipes and foods that worked best for us. “Where do you get your smoothies?”, “Is a plant-based diet the best way to go?”. There’s an instant camaraderie as if we’ve ended up on the same team in an important game. And like a good teammate he issued me a small challenge. He told me that he had been craving a piece of filet mignon from his favorite restaurant, something he and his wife had enjoyed many times before his illness. Given his condition, attempting to eat a piece of meat, let alone in a public place, would be challenging, if not dangerous. Admittedly it was a slow, very deliberate meal but his joy at recounting that night was incredibly moving. I’m not brave enough yet for my filet mignon “moment” but thanks to my dysphagia teammate, I’ve got a new goal.    

To anyone reading this who either has dysphagia or knows someone who does, I understand just how hard the simple act of swallowing has become and how much your life has changed. It’s not an easy existence and there are difficult moments to be sure but there are talented, caring people who are working to make living with dysphagia a life well worth living.