Sad man holding up happy face mask

I Don't Look Sick

Charles Cole talks about living with Stage IV, and the pain of hearing you "don't look sick."

Dealing with "you don't look sick" over the last 3 years has always been my biggest crutch. When I get ready to go to the doctor's office, I'll be walking outside with my walker or I'll be driving my scooter to the car. My wife is the one that pulls my scooter apart and puts it in the trunk because the cancer that I have on my spine and in my hip area forbids me to be able to pick up anything. I feel bad for her. While I'm waiting to get into the car, my neighbors are usually outside walking around, puttering around their lawns, whenever they see me, they'll come over and talk to me and say, "Chuck how you feeling?" or "You really look good today!" and also "You sound good too." After they ask me how I'm feeling I reach deep down inside and ask myself "What do I tell them, that I feel great?"

How I really feel inside...

I'm really hurting deep down inside. I don't want to be a wise guy so I tell them I feel okay today even though I am really hurting. They don't have the slightest idea of what's going on. Every chance I get I always try to inform them on what it's like, or what I'm feeling. I try to tell them it's something like having the worst possible flu you have ever had. You know when your bones hurt, your insides hurt and you just feel terrible but without the cold, sneezing, headaches and everything else. When they tell me you don't look sick, that you look fine and that's when sometimes you just give up. When you have the flu you show it or when you're getting off the flu you still showing it, but when you're on chemotherapy it's a different story. I am dealing with a drug that's running in your blood throughout my system trying to get rid of that critter call cancer.

Realities of chemotherapy

Cancer, what a horrible word that was when I was told that 3 years ago and I really didn't even understand what it was. Even when they put me on chemotherapy for the first time, I read about it but still did not understand all the mechanics of it. The only thing I understood was chemotherapy hurts, it hurts your bones, it hurts your insides, it also hurts inside of your mouth. You get that metallic taste and everything you eat tastes weird or has no taste at all. It takes me 10 days before I get my taste back. Then people offer you food but you tell them I can't eat it because it won't taste good.

People don't understand what you're going through. And I'm trying not to hurt their feelings but as I said, they just don't understand what it's like. It also gets into your feet. I have neuropathy in both feet because of chemotherapy. So after dealing with it and after dealing with for other drugs it's very hard trying to understand what's really going on.

One thing cancer will never steal

But the one thing that chemotherapy and cancer are not going to take away from me is my personality, my love for life, everything I was doing before cancer. In the beginning, it was rough because I was new to chemotherapy. I was new to aches and pains that I'd never experienced before and then when people would ask how you feeling I pretty much went along with it. Most of the time I'm taking Dilaudid for the pain. It gets so bad in my back I was on fentanyl for a while to try to help it. The people say to you, still, you don't look sick.

When I go to the infusion clinic I always laugh, tell jokes, while I'm getting that dreadful drug being pumped inside of you knowing that it's tearing every single thing up inside your body, but still I am going to smile and I'm still going to laugh because I'm not going to let this beat me I am going to fight this all the way to the end. Just remember it's called attitude, one more time, attitude.

Answering that dreaded question

We, as cancer patients, know what's going on. The people around you have no idea but the one person that should know everything about you is your spouse. My wife knows when I'm sick. Let's say you go to somebody's house for a little party and you know you're going to be asked how are you feeling. You look really great and deep down inside you're hurting. So what do you say, we just say, "We're alright -- I feel okay today" because the people that ask have no idea what you're going through. The pain every day and some days it's hard to get around but you just tell them I'm doing alright.

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