April 19, 2019

Stopped in My Tracks – Experts by Experience

By Merry, Volunteer Mentor

Almost five years ago, I was diagnosed with post-traumatic stress disorder–PTSD. In hindsight, my symptoms began years earlier, after my second diagnosis of lung cancer. I learned that cancer was a huge trigger for my PTSD, and it explained my depression and anxiety, the withdrawal and constant irritability. I was a cat who was cornered, hissing at anything that moved.

Years ago, I needed an X-ray for a possible broken rib. What I saw on the X-ray was not a broken rib, but a solid mass in one of my lungs. I remember just standing there–frozen–afraid to take my eyes off that X-ray. The radiologist came into the room and said, “This is a cancerous tumor. It is the most important thing in your life. As a matter of fact, it’s the only thing in your life. You need to see an oncologist immediately because of where your tumor is located. You have no time.”

What followed were frenzied weeks of appointments, a biopsy, scans, blood tests, breathing tests. I wanted answers, but didn’t know what questions to ask. Was I going to die? The surgeon informed me that the entire right lower lobe of my lung had to be removed. Really? How many lobes did I have?  Would my lungs regenerate? Would I need to have oxygen all the time? How long would the surgery take? How long would I stay in the hospital? Would it hurt? Yes! Yes, it did. A lot!

When I awoke after the surgery, I couldn’t inhale; when I could inhale, it was very little. Was this all the air I could breathe now?

After four days I went home with no idea of what was to come. Before the X-ray, I had been a wife, a mother, an artist. Was I a cancer patient now? As I stepped out of the hospital, I was told I should “go out and live my life.” But I didn’t want to be with anyone. I felt guilt and shame. I had been a smoker. And now, I didn’t know who I was.

In the ensuing months, I tried not to think about my cancer but about living. And just like that, I made it through 10 years!

My 10th anniversary came and so did a call from my surgeon. The most recent CT scan showed two more lesions, this time in the upper left lobe. Within two weeks I was at Massachusetts General Hospital, being prepped for my second lung surgery. Seven-and-a-half hours later, I woke up. This time, because of a third tiny lesion which had penetrated the pleura, I would need a blood transfusion and chemotherapy. Also, my pulmonary artery had been nicked!

When I was discharged from the hospital I was still in shock, not really understanding what more than one lesion in my lung meant. I felt the air whisper that something was not right after the surgery. I began having debilitating migraines. Depression and anger replaced exercise. I’d curl up on my bed, emotionally cut off from the world. I was disappearing. I was petrified and yet, unable to help myself. PTSD had grabbed a hold of me.

The PTSD was robbing me of any promise, any feeling of sanity; hope oozed out of me like sap from a maple tree. In the many years of follow-up CT scans and doctors’ appointments, no one responded when I told them I had PTSD. They were unequipped.

The purpose of sharing my journeywhat I want you to understandis that PTSD is a real mental illness. When talking to a patient, think about the implication of your words. When a patient shares something, please listen even if you aren’t familiar with that information. Most importantly, please respond.

I listened to my doctors who told me to “go out and live my life.” I tried, I really did. But no one handed out instructions.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Meredith Preble is a volunteer mentor on Mayo Clinic Connect. She has multifocal adenocarcinoma of the lung and was diagnosed with PTSD five years ago. She chronicles her experiences on her blog, A Journey with Lung Cancer–My 20+ Years, and lives in Rhode Island with her husband.

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How to live with PTSD:
PTSD is a real mental illness.
What's it like to suddenly discover you have a cancerous tumor on your lungs? Just ask this Mayo Clinic 'expert by experience.'

Tags: #LungCancer, #PTSD, Experts by Experience

The mental and emotional suffering associated with a physical disease can often be worse than the physical disease itself, and create a positive feedback loop, making the whole situation worse. Thank you for sharing – it will indeed help others to know they are not alone in these experiences.

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