Debra Sheridans Grandson

 

My grandson was 2.5 years old when I captured this image of him. He had just watched his dad drive away to make a quick run to the store. The poor little guy was devastated. There was to be no consoling him.

Sometimes this is exactly how one feels. Overwhelmed. Fearful. Abandoned. Alone. Feelings are. Feelings deserve to be acknowledged. Telling someone to not feel the way they do, or that they shouldn’t feel the way they do, is dismissive of the person and what they are trying to express.

All types of cancer are tough to deal with. HNC, regardless of origin, tends to be late stage when diagnosed. I have said this repeatedly. Any cancer discovered late stage means the treatment will be rigorous and harsh. And HNC treatment, regardless of origin, is rigorous and harsh.

I posted on the Faces of HNC Facebook page an article about the mortality rate of all types of HNC combined and the suicide rate of HNC survivors, in the USA, compared to the general population. The discussion on the Faces of HNC page didn’t go far. But I noticed an HNC survivor who shared it to their Facebook page received a number of responses from other HNC survivors disputing both the article and the feelings of the person who used the article as a way to describe feelings since diagnosis and treatment. My heart bled for the person. “Ignore those who can’t accept you as you are.” “Those who do not accept you are morons.” I am paraphrasing but the sentiment is the same. None addressed what was expressed. “I don’t like who I have become since treatment.” “There is no one else like me where I live.” “People look at me like I’m a freak.” Telling someone to ignore their feelings is no solution for one who is crying out “how do I live with what I have become?” Some people did share they too felt like freaks but they chose to ignore it and move on and suggest likewise.

But do we really? Do we really ignore the changes treatment brings? Looking different than before treatment. Voice sounding different, or robotic. Food, if it can actually be swallowed, tastes like crap, if it has taste, and most certainly does not taste like it used to. Some become neck breathers and all that entails. Wondering, when will things get back to normal? What is normal? Coming to grips with what was normal before treatment no longer exists and trying to figure out how to live life with the after effects of treatment. Worrying about recurrence. Dealing with the late effects of radiation. Anxiety in social settings where other people can’t slow down enough to allow inclusion in conversation, or being able to effectively share a meal with others. Is it really so easy to just say “Suck it up and get on with it?” or “You’re lucky you’re alive” and expect someone to feel better about themselves and what they are trying to deal with?

I know from personal experience about not being empathetic enough with a former friend who was not happy with an aspect of her appearance. My exasperated response after listening to a multitude of reasons why this person felt unattractive because of this one aspect – “You are a beautiful woman. I breathe through a tube in my neck and talk with a vibrator. I don’t understand why you are obsessed with getting _______ fixed.” Ugh – I was guilty of being insensitive to the feelings of another. Telling someone that one looks just fine when one doesn’t feel like they look just fine doesn’t help them. It diminishes or negates their feelings. And everyone is entitled to their feelings.

When a well meaning person helped me adjust the tone of a loaner electro larynx and said “I’m so glad you’re happy with your voice.”, I know my retort “Let’s get something straight. I accept the sound of my voice. But I’m not happy with it.”, was not said in an appreciative or thankful manner. I didn’t mean to sound ungrateful or hurt the person’s feelings but I’m sure I did.

I tell people continually, it’s not a competition. Everyone struggles. Everyone has challenges and demons they have to face down. HNC is not considered sexy. It is not a popular topic of discussion. When a life challenge attacks your very being as a human being it is tough to come to grips with the “new you”, especially when the new you doesn’t conform with our own or society’s standard of attractive human beings. I know those who say “Just suck it up” or “We love you no matter how you look” or “We’re never given more than we can handle” (I personally object to that one!) or “It could be worse!” mean well but it doesn’t help the person who is crying out for help right now.

No one said life would be easy, and it certainly isn’t, for anyone. So, if next time we interact with someone who is not as quick, physically or mentally, as we’d like, not looking as we’re expecting, sounding differently than we are accustomed to, or needs their food and drink prepared in a certain way, or is a bit brusque or grumpy, perhaps we can take a breath, and remember the old proverb, “before you criticize a man, walk a mile in his shoes.” Or as my physician customers taught me “There, but for the grace of God, go I.”

 

Debra Sheridan, Founder and President
Faces of HNC
http://facesofhnc.com
debra@facesofhnc.com

DSC_0007 Debra Sheridan profile pic

Faces of HNC is a Franklin, TN based 501 (c) (3) organization dedicated to raising public awareness about head and neck cancer and resources to provide solutions that improve quality of life for HNC survivors of treatment, one voice at a time. Please be among the voices that speak for voices lost.

All photographs included in my posts are taken by me, Debra Sheridan, owner of In The RAW Photography. All proceeds of In The RAW Photography go directly to support Faces of HNC awareness activities.

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Diagnosed with stage 4 squamous cell CA of tonsil in October 2006. Completed treatment on my birthday, February 14, 2007. Cancer free!!!Treatment effects set in before treatment was finished and despite hope, additional therapies and surgeries, the effects, especially of radiation, took hold. Breathing, eating and speaking were significantly impacted. February 2008 a tracheostomy was performed to relieve breathing difficulties due to tracheal stenosis, caused by radiation scarring. This allowed my voice, which had been absent since early January 2007, to be restored over the next several months and after 40 hyperbaric dives to kickstart healing of the irradiated tissues. Multiple dilations and other treatments to relieve recurring stenoses of trachea and esophagus resulted in a total laryngectomy and esophageal reconstruction October 2014. Subsequent scarring closed down my esophagus at the reconstruction sites and a follow up esophageal reconstruction was performed December 2015. I am thrilled to still be alive, having beaten the odds and the obstacles. I happily speak with an electro larynx.

About The Author

Diagnosed with stage 4 squamous cell CA of tonsil in October 2006. Completed treatment on my birthday, February 14, 2007. Cancer free!!!Treatment effects set in before treatment was finished and despite hope, additional therapies and surgeries, the effects, especially of radiation, took hold. Breathing, eating and speaking were significantly impacted. February 2008 a tracheostomy was performed to relieve breathing difficulties due to tracheal stenosis, caused by radiation scarring. This allowed my voice, which had been absent since early January 2007, to be restored over the next several months and after 40 hyperbaric dives to kickstart healing of the irradiated tissues. Multiple dilations and other treatments to relieve recurring stenoses of trachea and esophagus resulted in a total laryngectomy and esophageal reconstruction October 2014. Subsequent scarring closed down my esophagus at the reconstruction sites and a follow up esophageal reconstruction was performed December 2015. I am thrilled to still be alive, having beaten the odds and the obstacles. I happily speak with an electro larynx.

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