April is Head/Neck Cancer Awareness Month. This is a type of cancer that everyone thinks they know about but actually unless one has become part of this select group it is impossible for humans to comprehend what it is and its impact on life. For example, several years ago I challenged a number of my musician friends to write songs for an upcoming HNC awareness event. I requested a meeting with each to discuss aspects of life after treatment I wanted each of them to consider as part of their creative process.
One musician I approached is educated and trained in classic and contemporary composition for piano. I was looking for an anthem, with various movements to express various stages a person goes through between “You have cancer” and accepting the transformation they’ve undergone. “Sure!” he said. “I get it. The first movement will be light, happy, carefree. Then the next movement will be ominous, scary. The next movement will be all stormy. That will be the treatment part. And then the last movement will be back to light, happy and carefree. It’ll convey a storm in life but the storm passes and all is good and hopeful again.”
As I listened to the description I was watching his eyes, his body language. He believed this is the way things are. I took one of his hands and said, “This is why I wanted to have a conversation with you. That is a pretty picture you painted but it has nothing to do with HNC and life after treatment. I agree with the first three movements. But the last movement cannot be light, happy, carefree if it is to be real, to be honest. Because the next movement has to portray the transformation that no one wants, no one likes, but must learn to accept and love. And there has to be another movement to portray trying to reintegrate in society as it is right now. That is a really difficult time. And the end has to be open-ended because the story really doesn’t end, it just keeps changing.” “Wow!” he said. “Whoa! I don’t think I can do this. I can’t think about this. It’s too much.”
And it can be too much for many people to think about, a type of cancer that attacks the vital organs of human existence. HNC affects appearance, voice, ability to breathe, to swallow nutrition and hydration. As humans, our appearance and our voice are our identities. Being able to socialize with other humans is a vital part of emotional and mental well being. We have all read articles about the hazards of social isolation. With the COVID-19 crisis urging (perhaps by the time of publication of this article demanding) social isolation from others the world is getting a taste (pardon the pun) of HNC post-treatment life. For HNC treatment survivors it is a combination of self-isolation for protection from illnesses, from comments made by unthinking or uncaring people and social isolation simply by being different from how the person was or how people perceive how people should look, breathe, sound and receive their nutrition and hydration.
I’m not saying this to add to the current doom and gloom heard on the news and on social media these days but rather to shine a light on what people have been living with long before the current coronavirus crisis, sometimes for decades.
One aspect HNC treatment survivors live with is its public visibility. There is no hiding the scars, the altered appearance and voice resulting from surgery and treatment. The stigma society attaches to these changes is hard to ignore, and challenging to live with. People take a glance, or swivel their heads around to find out what that sound is, and jump to the conclusion that the person must have done something to deserve their fate. Comments from strangers are made freely and without thinking “That’s what you get for smoking for 30 years.” “If I was you I would have killed myself rather than live like you.” “if I ever get like you just shoot me, ok?” The past few years the news has done a better job raising awareness of HVP 16 based cancers, particularly of the oropharynx. And with it a new level stigma as the virus is shared by close contact, not necessarily sexual.
Thanks to COVID-19 the world is gaining a stronger awareness of others in the world. People are paying closer attention to those around them, adjusting their trajectory when walking on the sidewalk to make room for others. Before COVID-19 it was easier for some people to be cavalier about life and to think some people would be better off dead. Now that there is a threat to everyone, people are remembering life is precious. Just like COVID-19, HNC is nondiscriminatory. Neither cares about ethnicity, nationality, gender or gender identity, lifestyle choices, education, occupation, age. The COVID-19 crisis will pass. HNC treatment survivors will continue with social distancing. We can only hope after the COVID-19 crisis passes, and it will pass, the world will retain an appreciation of what practices we all needed to do to live, as we HNC treatment survivors will and must continue to do, and be more accepting of the realities of our transformation.
Stay safe and wash your hands!!