What Survivorship Means to me

Someone asked me recently what is feels like to be a cancer survivor, how I felt about being known as a cancer survivor. It’s a complicated question because being a survivor is not something I volunteered to be, it is a title where I participated in the fight of my life to claim, it’s not a conscious choice I made. I never wanted to become a Survivor. I had to be a survivor.

Like most other head and neck cancer survivors I was physically and emotionally scarred by the end of my treatment. By that time, almost 14 years ago, I was transformed into a kind of living zombie. After experiencing 34 radiation treatments that cooked my skin, scarred my throat, destroyed my thyroid, saliva glands and teeth, paralyzed one of my vocal chords, all ending with a partial neck dissection that left a giant zippered scar, I was left shell-shocked and in a drug induced haze. At that point, treatment abruptly stopped and I was instantly awarded the title of survivor. That day began a “one day at a time” struggle back to some kind of life we survivors call “the new normal”.

Now, almost 15 years later, people look at me and say awkward stuff all the time like, “I can hardly tell you had cancer”, or “at least you still have some of your voice”, or “you look ok now”. As survivors, most of us have become accustomed to these insensitive remarks by well meaning but ignorant people. But please know this; being a survivor is not what I really wanted. What I really wanted is not to have experienced cancer at all. Once you have it, it lives with you forever. A recurrence is always just one check-up away. Every bump, every sore throat, every strange ache that “normal” people shrug off are potential life-ending events for me, causing days of angst and sleep-disturbed nights. Simple daily acts like eating, a joy that most people take for granted, are a constant struggle for me, requiring intense concentration and constant coughing to avoid choking or developing aspirational phenomena.

People say to me all the time, “15 Years, wow you are definitely cured”. Well, I don’t feel cured. I feel alive, but my existence comes with recurring emotional ups and downs that result from living with a genetic time-bomb in my DNA that could go off again at any moment. For me, that faint ticking in the background of my day to day existence will never go away.

So, I do survive, but it’s still one day at a time. I can never forget that. I survived today, I will try to survive again tomorrow. Each day of survival is a small victory, a mile-marker on a journey of an unknown length. So, yeah, you call me a survivor, but the word itself really doesn’t hold much meaning to me. What is important to me is being called a good father, a loving husband, and a doting grandfather. Those are true labels of substance and accomplishment. Surviving cancer was not a voluntary choice, it was a necessary means to accomplish the most important goals of my life.

9 Likes

First of all, let me say how awesome it is that you made it through all of that. My mother (God Rest her Soul) had Neck cancer for over 10 years before she was lifted up to the heavens in 2010.

Your definition of a “survivor” was on point. My momma was the inital reasoning for me to go to Nursing school and my reasoning for extending that to medical school to become a PA.

Between the radiation and constant chemo treatments, I was completely unaware of the pain, nausea, and stress my momma endured. Now 8 years later, my nephew is battling Stage 4 Neuroblastoma. If you ask him he will tell you that he’s not a survivor, he’s a “warrior with edge”.

You’re a true blessin’! Thanks for sharing this. I agreed 100%

5 Likes

Well said. I never boasted that I was a cancer survivor, nor did I wear T-shirts advertising my battle with an incurable disease. I was just so proud to be the over protective single mom who enjoyed raising her children and watching her daughter be a cheerleader and her son play sports. Because they were who I was fighting for. I too, had to be a survivor so I could raise my children to be good decent human beings and to be the best damn mom I knew how to be.

But after more than 10 years in remission, unfortunately, I have relapsed. And even though my children are all grown up, and may not need me as much as they used to, I will endure this course of treatment and take on Amyloidosis (Amy) in the battle of my life once again because I still have a lot more living to do.

I will survive for me.

6 Likes

I’m glad that you all didn’t give Up, I fought for over ten years with bladder, prostate and kidney cancer which I lost my bladder, prostate and part of my right kidney to cancer. I am in two and a half years in remission. And during all that I had to have part of my right lung removed due to a disease and about a year ago I had to have five bare metal stents put in my heart still have more blockages which they can’t do nothing for them cause they are in smaller veins. And to top all that I have two herniated disc in my lower back and I am still kicking

2 Likes

Excellent message! As “survivor,” I agree with you about being concerned about every “little” thing. For us it is not little. I have a rare cancer that can pop up anywhere in the body. I’m currently awaiting results of yet another tumor. I am facing the possibility of three more major surgeries, small intestine, Heart, and abdomen. What I think is funny is when people say, “you’re looking good, or your color looks good.” I always laugh on the inside thinking, I must’ve been one ugly fellow or what color was I. I know people mean well. I like what one man said about me. He said he told some that you’d never know how sick I really was because I was always upbeat and positive. It has been my faith in God that has brought me through. Blessings to you.

4 Likes

Overcomer is a choice I prefer to use. That is just my preference.
I also use Warrior.
Prayers, hugs and love to all you brave and courageous ones who are in this community.

3 Likes

I truly understand. I’m a Breast Cancer Patient with recurrence thyroid cancer removed thyroids. I have anxiety whenever I have a test or a ache or pain. Weight loss etc… Tired easily. Bones ache all the time. People always say you look good. You don’t look sick. What does sick look like?? I had mastectomy and now on hormone 💊 and there are a lot of side effects from the chemotherapy treatment. Hair loss and not growing back and bone pain, hit flashes from hormone 💊 its so much. I could go on and on. But I just get what you’re talking about. Peace and Blessings to you.

1 Like

Very well said and I echo your Word’s. People are insensitive and I get that on a daily basis!" You look like you dont have CANCER" You are in remission" etc etc. I never said Remission, when as you stated have the DNA in your body, the constant anxiety and sleepless nights wandering what’s this ache or pain?? Numerous scans, Dr Visits to check some where on your body that aches, or feels different Anxiety and Panic is an Understatement, to say the least. So I truly understand!! I also commend you for being brave enough to share your story. It really resonated with me. I send you HEALING 🙏 and Peace and Blessings. Take care One second at a time.

Being a survivor is so important to me. I decided when I was diagnosed with breast cancer that I was going to live it up. I worked. I chose to be upbeat and refused to be anything other than positive. Chemo made me hyper. I brag on beating cancer. I AM A SURVIVOR.

I hope you’ll write a book to teach people what to say and do to support and love the cancer survivors around us. You’re a terrific writer! Thank you for sharing. My son is a recent AML survivor.

Thank you for your kind words

1 Like