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Posts (18)

Nov 6, 2019 · Should hospitals use Facebook Groups for online patient support? in Platforms, Software, and Tools

@colleenyoung– Do you really believe that if FB applies different algorithm parameters for health-related groups, privacy will still be a question?

Nov 6, 2019 · Should hospitals use Facebook Groups for online patient support? in Platforms, Software, and Tools

Hi Dan- I'm comfortable with my FB page called Lung Cancer because I'm not selling anything, pushing anything or including anything controversial on purpose. It's only me and some worldly words.

Nov 4, 2019 · Should hospitals use Facebook Groups for online patient support? in Platforms, Software, and Tools

@DanHinmon, @colleenyoung– I do not use FB for any health related advice or medical information. I do not trust them at all as far as confidentiality goes. Being a mentor for Mayo Connect is testimony to my opinion of on-line communities as long as it is a community with certain goals that are not harmful and are truthful. I do feel hostage to FB because they have so much information on all of us. Nothing is sacred anymore. I have a FB page called Lung Cancer. I share quips about life and cancer.

Nov 1, 2019 · Should hospitals use Facebook Groups for online patient support? in Platforms, Software, and Tools

Colleen- In the instance of one person beginning chemo and an other finishing it would be ideal for the person finishing to counsel the other. I shudder at the thought that FB would delete the "negative." The person finishing shows hope to the one who just started, even as ill as she was. I would hope that FB sees the underling message that can be made of this and not cutting the possible story here out.

Oct 30, 2019 · "I'm not different from you I'm different like you" in Share

This caught my eyes too! Just love it

Oct 26, 2019 · "I'm not different from you I'm different like you" in Share

This is so great- It's true. When I was young I had a terrible time trying to figure out how to fit in, not knowing that so was everyone else, but in a different way.
I am a Mentor for Mayo Connect.

Jun 25, 2019 · A Good Night's Sleep - Experts by Experience

John- I loved my experience with writing for Inspire. You article is excellent and I'm sure that it will encourage a lot of people not to give up! What an inspiration you are!

Apr 19, 2019 · Stopped in My Tracks - Experts by Experience

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.