February 15th, 2019
| Survivor: Head and Neck Cancer
Dear Family, Friends and Medical Community,
We, as human beings, respond to situations in a variety of ways. What works for one person doesn't necessarily work for someone else. Some people learn better through visual aids whereas others are more suited to learn through a hands on approach. The same thing happens with cancer. We deal with it in a variety of ways.
I have an analytical mind and prefer to deal with factual data. I do not like false hope or sugar coated data. In a rocky relationship I prefer the other person to be blunt when the relationship is having problems. I prefer a boss to be upfront and blunt if my job is in jeopardy. I can better deal with, and be better prepared for, things that I know. I do not like being blindsided by the unknown.
I. Have. Cancer.
More specifically, I have stage 4 metastatic Squamous Cell Carcinoma, in the right tonsil that is. I've spent hours and hours researching information, gathering data and narrowing down the numbers to my specific demographic and diagnosis. I know that HPV related neck cancers have a higher 5 year survival rate and that it drops significantly for non-HPV neck cancers. My specific cancer is not HPV related. I’ve compared clinical trials performed on subjects of the same age/race/gender demographic as me to trials that I have recently gone through.
To the Medical Community - I know you try to avoid certain answers with patients. I've heard you say you don't like to use the terms "Stage 3" or "Stage 4" because it creates panic. I know you try to take an approach of providing hope and not delivering bad news in a such a way as to create a negative response. When I ask you what my chances are and you respond "Well it's hard to say. Each person responds differently. We just need to wait and see how you respond," you're avoiding answering the question. I understand why you're doing it, and it works for some personality types, but it's insulting to my personality.
To my Family and Friends - You make it very difficult for me to talk to you about my thoughts and fears. You respond with things like, "Don't talk that way. You need to stay positive. You need to fight. You can't go by those numbers. People can be an exception, you just have to be stubborn and fight". When you respond this way to me, you're actually pushing me away and making me feel more isolated. This may work for other people but it does not work for me.
I've done the research. The numbers are actual cases and actual numbers that have already happened. It's factual data that cannot be changed. It includes the crazy variables in people that you think will change the numbers and whatever exceptions you think I can possibly be. Do you really think all those other people in the past failed because they weren't positive enough, weren't stubborn enough or didn't fight hard enough? And how does one specifically fight cancer? Are there weights I need to lift? What can I physically do that is "known" and documented to work that will cure and prevent cancer?
When you respond to me with suggestions like this I'm seeing someone who doesn't want to deal with reality. You're keeping your head in the clouds rather than facing what's in front of us and by doing so you've removed yourself from helping me to deal with it. This is not supportive. Please don't be surprised when I stop talking about it.
I. Have. Cancer.
The best thing anyone can do with people like me is to be realistic.
Doctors, don't be afraid to give me the factual data. I will work through the five stages and reach acceptance much faster when you can be open, honest and upfront with me. Tell me I have x percent chance of making it 5 years and x percent chance of it coming back based on already documented statistics in the National Cancer Database. I can deal with it.
Family and friends, you of all people should know me well enough by now to know that I don't like smoke blown up my behind. You don't have to offer solutions to help. Most of the time I just need you to listen and try to put yourself in my shoes to see what I'm dealing with from my perspective. If it's too much for you, be honest and say you would rather not talk about it. I can completely respect that.
I'm going to have days where I'm tired and want to give up. I'm going to have days where my outlook is overly optimistic. I'm going to have days where I've shut down while I'm processing it internally. This is normal and is part of the path towards acceptance. Unrealistic expectations only slow down this process and are counter productive.
Photo credit of Jeremy Perkins
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