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Phantom Pain: Reclaiming Peace and Control Over Fear as a Cancer Survivor

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Phantom Pain: Reclaiming Peace and Control Over Fear as a Cancer Survivor
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It's summertime again! My cancer follow-up appointments always land in the summer. I found myself in that all-too-familiar waiting room—the same one where I anxiously awaited my mammogram results just a few short years ago. The lady who checked me in for my follow-up was the same lady who used to check me in for my chemo treatments. She had a job transfer, and she recognized me. We shared a few words and laughed about how our hair had changed over the years- she got a short haircut, and I have longer hair now.  

 

I usually schedule my follow-up appointments first thing in the morning or right after lunch. That's when the clinic runs the least time behind, and I can get in and out. This is super important to me for many, many reasons. On this particular day, my appointment was at the end of the day, and they were running over 45 minutes late. As I watched the waiting room empty, my mind began to race. I knew what was coming- I have seen this pattern many times. Even still, it doesn't feel all that comfortable. The palms of my hands began to sweat, my body started to tense up, and I shrunk into my chair. There was only one woman besides myself in that waiting room during that time. I closed my eyes, started to do my box breathing exercises, and attempted to calm my body down. Your mind might know things and rationalize a sense of safety in any situation, but your body always remembers the times it was deeply threatened. A response to that kind of threat remains on autopilot for some time.  

After I finished a set of breaths, I opened my eyes, and they landed right on the face of the one woman who was still sitting there in that waiting room. I could see the sheer panic in HER eyes and feel her emotions, her mind racing. She raised her gaze to meet mine; she was looking for an out, too. I would recognize that look anywhere because that's precisely what was happening to me, too. I looked at her and, as if by instinct, said one single word. It came out like a command; "BREATHE," I said! She heard me, and she saw me. As she began to breathe deeply, following my lead, I could tell the wave of panic was settling down. She and I landed back into the reality of being safe, being comfortable sitting in her fluffy chair, even though we were still in the waiting room for the breast cancer clinic.  

 

For the first time, I looked at the woman beyond just looking into her eyes and noticed that she was sitting in a wheelchair. "Thank you," she said as she reached down towards her legs and pointed at what was left of her lower limbs. Both legs were amputated below the knee. 

 

"PHANTOM PAIN," she said.  

 

You see, as I looked carefully into the situation around me, I realized that this woman wasn't there for cancer at all. As it turns out, she was waiting for her caregiver, who was in the clinic getting a mammogram. We were both in the same waiting room, experiencing the same level of distress, but for entirely different reasons. Fear is a natural part of life. It happens to all of us for all sorts of different reasons. What we all face is how we acknowledge it, anticipate how we respond, and deal with it, bringing awareness to what is real and what is a phantom pain.  

 

A considerable number of cancer survivors struggle with fear of recurrence. The number goes up if the person has more physical symptoms or physical pain that's left over from their cancer experience. You see, your body doesn't forget what it went through, nor does your mind. I know mine didn't. I still tremble when I walk those halls sometimes. It doesn't affect me like it used to because I know it's coming, I understand why, and I know to give myself grace and reassurance before attending these appointments.  

 

Your thoughts affect your body- when you think of something uncomfortable, you can notice yourself tense up, and that pit in your stomach has butterflies. That emotional connection would be the way your body reacts to your thoughts.  

 

That connection works in reverse as well. When you walk into that too-familiar waiting room, and your body starts reliving what it went through as part of treatment, your emotion-filled thoughts turn in an unexpected direction as a response. I learned that the only way I can deal with it is if I acknowledge and expect it.  

 

It's like being a kid and telling your mom and dad that monsters might be hiding under the bed. Your emotions are like the kid, your rational brain is like the parents, and your body is your room with "maybe monsters" possibly hiding under the bed.  

 

How your internal "parent," i.e., your rational mind, interacts with that kid, i.e., your emotions, determines how safe you feel in "that room" - your body. The good news is that you can use your rational brain and agree to give yourself what you think would help your emotions in the moment. The key here is to keep that "parent" rational and calm so it can take action.  

 

The first step is to EXPECT a response and ACCEPT it as a normal part of recovery. Plan it out. Decide what would help you ahead of time.  

 

Is it a breathing exercise? Which one?   

Is it going to the bathroom and running your hands under water? Decide hot or cold water. 

Is it a particular playlist in your headphones? Create it.  

Is it a friend that comes along or waits by the phone during that time in case you call? Arrange it.  

A hot cup of cinnamon spice tea that you bring with you.  

A favorite smell in a tiny bottle in your purse. 

A crossword or a coloring book you bring with you.  

 

Use your rational brain to understand and prepare to help make your emotional brain feel safe in that waiting room. Do not insist that monsters are irrational and will those monsters to disappear; be present for your emotional self, as long as it takes, no judgment or questions asked. That is what I plan to give myself when these things arise and all those familiar waiting rooms. 

 

The mechanism behind this fear is multifaceted. As cancer survivors, we face ongoing uncertainty about prognosis and long-term health, as well as the potential lasting effects of cancer treatment. Physical symptoms like pain, fatigue, or other side effects can act as triggers, reminding us of our previous cancer experience and sparking worries that the disease has returned. We also assume we are less protected when most of our treatment is complete and we don't have as much face time with our medical team. I invite you to explore the SurvivorRx community further or look for a local community wherever you are. Give yourself the gift of knowing you are not alone and spend some time discovering the unique blend of stress management actions you can take as you anticipate a natural response of fear after cancer.   

 

From my experience managing this with myself, I see why research has shown that mind-body interventions can be beneficial. Techniques like cognitive behavioral therapy, mindfulness meditation, yoga, and relaxation exercises can teach survivors to recognize and reframe their fears, focus on the present moment, and develop healthy coping strategies. These approaches are not a magic bullet but require intentional action. The encouraging news is that we can take part in helping ourselves take back a sense of control and reduce the negative impact of persistent worries on our daily quality of life. 

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Lena Winslow

Cancer Survivor

Lena is an integrative health coach and a cancer survivor who helps individuals navigate life transitions and health in recovery. Blending her personal experience with cancer, first with her mother and then her own, her background as a nuclear medicine technologist, and national board certification in health and wellness coaching, Lena co-creates tailored conversations with her readers focused on the power of choice, resilience, and vitality. She is a wife of 25 years, a mom of 3, and homeschools her children, including a child on the autism spectrum. Lena's work emphasizes how creating self-trust, vibrant health, and purpose after cancer is possible.