I never thought I’d admit experiencing fear of cancer recurrence, but at a recent medical appointment I realized that I struggle with this fear daily.
For months, I’ve had one medical issue after another.
When I began to have weird headaches, I set up an appointment with primary care physician. When I was unable to swallow normally and food started to get stuck in my chest, I saw the gastroenterologist. When I felt a deep, throbbing pain in my legs, I saw an orthopedic specialist. When my blood pressure shot up and I began to feel pressure in my chest, I saw my cardiologist.
I’ll admit it was a lot, not only for my pocketbook, but also for my psyche.
I’m not a hypochondriac, but those who don’t know me might beg to differ. If you saw my calendar, you’d cringe. It’s filled with past and future appointments, each recorded in bright-red marker.
Yesterday, I was scheduled for an abdominal CT scan, a follow up because of continued digestive issues. The gastroenterologist felt it wise to do further testing, especially since I’d had to have my esophagus stretched recently and since my brother died of esophageal cancer.
I was afraid to have the test done. I didn’t want to admit it, but I was petrified they’d find cancer.
My husband took off work to go with me. I didn’t realize it until we pulled up to the building, but I’d been at this diagnostic imaging center before. Eight years earlier, I’d had a diagnostic mammogram there.
We went inside to register and that's when I saw it — the big, pink, lighted ribbon along the hallway in front of the desk. Memories came flooding back and my heart began to race. That day eight years ago, I’d been alone and had no idea what the future held.
Filling out the registration forms as quickly as I could, I glanced into the waiting room. People were coming and going. I tried not to stare. When I was through, my husband and I found seats and I pulled out a book to read. As I opened it, I looked up. Directly across from me were several women.
Since we were in close proximity, it wasn't difficult to overhear their conversations. One woman was there for her very first mammogram. She had her mother with her, lucky girl. Two middle-aged women, clearly good friends, sat together chatting about their last mammograms. An elderly lady was there for a 3D mammogram. My heart went out to her. I felt like she'd probably had a brush with cancer previously from the way she acted and the bits of conversation I overheard as she talked with her driver friend.
As I sat there, I began to feel strange as a wave of emotion washed over me. I knew the feeling well. It was fear, the ugly, nasty fiend that haunted my mind with words of despair: “Your cancer will come back one day.”
The constant fear of recurrence is a real thing and one I didn’t want to admit. But every pain my body felt reminded me of the possibility that cancer could be back.
I did my best to be proactive. I wanted to catch any recurrence quickly in hopes of nipping it in the bud before it had a chance to take root and grow. That’s why I scheduled appointments without hesitation but seeing the number of appointments I’d already had and the ones still upcoming, prompted me to face reality.
Not only was I suffering from real physical issues, but I was also suffering from mental anguish caused by fear. That’s when I decided to do some research.
I found a form online, a short survey, for those who think they have a fear of cancer recurrence. I decided to take it and see where I fell on the spectrum. There were only nine questions and the ratings for each question ranged from 0 (no fear at all) to 4 (a great deal of fear of recurrence).
Some of the questions/statements posed on the survey were:
Out of the nine listed, after choosing my 0-4 range for each, I scored 29. I had no idea what a healthy score was because I couldn't find the scoring criteria or an evaluation of the "test." I felt like I was well within the moderate range — the range I assumed most survivors fall into — but I wasn’t sure.
I did realize, after taking the questionnaire, the fear of recurrence was affecting my quality of life in a negative way, and I needed to figure out a way to correct that.
Since my cancer diagnosis, I’ve done a lot of self-talk. I’ve journaled. I’ve used art as therapy. Anything I could do to keep my mind from going to that dark place in the past, I did.
Facing one’s on mortality is never easy. I knew I’d die one day, since we all do, but I wasn’t ready to go any time soon. I wanted to live a little longer and I wanted to live without being fearful.
In two weeks, I have an appointment with my oncologist for an annual exam. I’ve been experiencing a good deal of spinal pain so it will be the perfect time to discuss that with him. I imagine he'll want to do a PET scan since I haven't had one done in the past two years. While there, I'll talk with him about this test and get his feelings on ways to combat fear of cancer recurrence.
In the meantime, I'm going to cling tightly to this wise quotation:
"Fear keeps us focused on the past or worried about the future. If we can acknowledge our fear, we can realize that right now we are okay. Right now, today, we are still alive, and our bodies are working marvelously. Our eyes can still see the beautiful sky. Our ears can still hear the voices of our loved ones." —Thich Nhat Hanh
You can't see or touch fear, but you can certainly feel its power. Finding a way to strip it of that power can only be conquered by faith. And I have faith, even though it's just a little bit.
The Bible says, "If you have faith the size of a mustard seed, you can say to a mountain be moved into the sea, and it will be moved!" I'm not sure I have that much faith, but I like to think I'm close.
I think fear is a huge component of post cancer PTSD. It affects people differently. Some struggle a lot and others may not struggle at all. But for those like me, who deal with it on a daily basis, admitting there is a problem is the first step to overcoming it.
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