At our June 2017 meeting, I read out a Facebook contact I had from America. I think this is an extreme case which can be avoided, but what do you think?
I struggled with whether to post this but I think it is important for all you “regular” folks to know what we survivors of head and Neck Cancer go through and are thinking. Some of the side effects of the treatment for this disease are not necessarily visible and therefore not on your radar screens. The point of the following post is to tell you how we feel. I say “we” here because after posting the same message on my support group page I received dozens of responses from people saying you have voiced exactly how we feel. Here goes:
“Eating has ceased to be a social occasion to me.”
Today, one of our members included that sentence in a response to one of my posts. As I read those words I stopped, blinked, and read them again. I have never said those words out loud, or even uttered them to myself, but boy reading those words set of bells and whistles in my head. Of all the side effects that I have to live with, trying to eat normally is the one side effect that I cannot hide. When I sit down to share a meal with others who don’t know me well, I inwardly cringe at what is about to transpire. When I eat, even soup or smooth and slimy foods like mashed potatoes, I cough, gurgle, make faces, turn my head this-away and that-away, clear my throat and guzzle water. It is quit a spectacle, and it makes a lot of noise. It also attracts a lot of attention as people all around me stare to see if I am going to survive. For this reason, I don’t eat out much, don’t go to church suppers or parties, never eat at fancy restaurants, or dine with people I don’t know very well. In fact I only eat out about a dozen times a year. Doesn’t count Dunkin’ Donuts!
When I look back on how I got to this self imposed solitary state, I must say it happened naturally. After treatment I tried to stay social and involved with my existing social group. But since rule number one is “you must not talk while you are eating”, I tended to be the one sitting in the corner seat who just smiled and nodded while everyone else conversed. When people addressed me I just held up my finger and begged for time to choke down my latest bite before trying to speak. It became a chore to eat with others. I remember once I was eating noodle soup all by myself in a small vegetarian restaurant. Each time I tried to swallow I would cough to clear my throat. The diners around me stared and look concerned. The waiter asked me if anything was wrong. My disability, and yes it is a disability, was not understood among my friends much less those who just came upon, or witnessed, one of my eating performances.
People in general could not really understand my food consumption performances and I found myself explaining head and neck cancer, and it’s lovely side effects, at every meal. So naturally I began to eat out in public less, I stayed away from social gatherings that included food, or worse, attended them and stood by and watched other people having fun “talking and eating”. It finally dawned on me that I didn’t need to put myself in those situations…….so I didn’t. I began to withdraw from the social scene altogether. After all, what social event does not include food.
People around me think I am anti-social, I am OK with that. People can’t understand why my wife and I turn down all dinner and lunch invitations. If I tell them the real reason they say things like, “we understand, it will be fine, no one will notice”. These remarks although not intended to be offensive, completely miss the point. But everyone notices and, HELLO: IT AINT NO FUN FOR ME.
I guess I have became a little hardened by my constant struggle to look normal. Today 13 years post treatment I am fine with the way I have chosen to deal with this disability. Some people would not be able to handle the amount of social isolation I have brought upon myself but I am lucky to have a wife who understands and does not hesitate to go off with her circle of friends to socialize. I am also very comfortable in a solitary environment.
So, as the lady said so elegantly, “eating has ceased to be a social occasion to me”. And I am ok with that.