I have not written one blog this month. This has been the most intense October for me since opening DiepCJourney Foundation in 2016. I can’t say why for sure, but I am exhausted and thought it was time to share some reflections as October and Breast Cancer Awareness 2024 Ends.
Some Losses and Some Gains Reflecting this October
Has anyone every said, start with the hard part first then finish with the easy stuff? That’s how I’m going to tackle this. The hard part is not that hard, mostly an annoyance. If you are a patient advocate reading this, it may resonate with you. I was an invited speaker at a conference. We were asked to record our presentation and listen to the other speakers for the recorded Q & A session.
I worked diligently to prepare my slides and presentation. The first thing I said in my opening remark was my name. I will admit I get varying iterations on my last name and why I stated it clearly at the beginning of my presentation. As a trained ESL teacher my mantra has always been to honor a name given to a person and I always impressed upon my students the value of this. If I am sure I am going to be challenged by a first or last name, I politely ask the person to pronounce it for me and sometimes say it aloud to them to verify I’ve said it properly. I am sensitive to this, having instructed students from various countries.
Before I Knew it…
Before the session was recorded, it was asked if any of us had any questions first. I did and wanted to know out of curiosity who put my name in the hat to be on the panel. I was the only patient advocate on the panel. The rest were surgeons. I may have felt flattered by that until I was told they had no idea who submitted my name. My place on the panel suddenly felt contrived. I wasn’t sure what weight my talk even had at that point and still don’t for that matter. But I dutifully gave my presentation.
The second annoyance came when my name was pronounced as “Dr. Coot.” Here is your cue to laugh now if it tickles your funny bone. Some have mistakenly called my “Dr.” before because I am frequently in the company of doctors at the Foundation. I get that. But what took me back was the fact the other panelists names’ were three times the length of mine and the moderator nailed their names. It felt like the invitation to the table became a seat to fill, to be quite honest.
I Decision to Brush it Off.
When I arrived at the conference to pick up my badge, I thought to myself, at least I’ll get to wear my “Speaker” ribbon with pride on my badge. I can brush off the fact they didn’t get my name correct during the recording. If you have been to a conference there is a standing joke about having “ribbon envy.” You get a name badge but attached to the badge attendees add ribbons stating any duties or responsibilities they have at the conference. I thought I could at least wear my “speaker” ribbon with pride for the work and message I put into my presentation.
Nope, nope, nope! I went to the desk to pick up my badge. A conference worker told me I could pick up any ribbons at a kiosk she pointed to just a few steps behind me. I looked at the various categories that were many with the assorted colors of ribbons. Under the speaker category, it was empty. I went back to the desk and let them know. They said, “Oh, I’m afraid we’re all out.” I took my badge and stuffed it in my pocket in frustration. Shallow, I know, but when you don’t get this opportunity often, it was hard for me to brush that one off.
Things Turned Around on Day Two
I entered the conference on day two exhausted and dehydrated from travel the previous day. There was an early morning session I really wanted to attend. I sat alone and up front so I could take some photos of the slides. With my badge still in my pocket from being a bit pissy from the experience the day before, I was ready to settle in and listen to the presenters. I knew most of them on the panel but had only met one in person. I had a cup of coffee but should have been rehydrating with water.
It was a tremendous presentation, one of the best I have ever been to at this conference. One slide pulled up discussing the value of social media and online support groups. Mine wasn’t mentioned… yet. Another group was mentioned, and I sank further into my seat feeling another sense of “why am I really here?.” But the session was welling me up with emotion on many levels. The panelists were honoring all the emotional, physical, and financial changes and challenges breast cancer patients face. I was moved, touched, and so pleased to hear this kind of presentation.
An Acknowledgement Worth Saying Out Loud
Then, a new slide with DiepCJourney was right there in view of everyone! I felt a sense of pride and joy for my people, my tribe, the members I call #JourneyStrong. What happened next took me by total surprise. The panelist who created the slide and was talking at the podium looked straight over at me and said, “This is one of the strong groups on social media and Facebook and I’m very glad to see you are here in the audience with us today.” I put my hand across my heart and tapped it in gratitude and looked back at him and smiled. Thank you Dr. Justin Broyles! You deserve this shout out.
Reflections of What My Tribe Means to Me
The session was complete and now the audience could go to the mike and ask questions. I am always there representing “my tribe,” the breast reconstruction and breast cancer community I serve at DiepCJourney. Pulling up my Facebook group on my phone I began scrolling through comments, concerns, and questions while the speakers were talking. I thought to myself, they get it! This is what I do every day. I wanted them to know how much of what they said resonated with me. So, I stood up and “took the mike” as it’s called at conferences. What happened next took me by total surprise.
Lacking water, having a dry scratchy voice, and full of all the emotion that filled my soul while I was looking at comments on my phone during this fantastic presentation came pouring out in my comments. I gave kudos to the physicians for a stellar presentation and shared with them that this is what I do many mornings, answering the concerns they spoke about in their talk. It was then I asked if I could read to them in real time what I was seeing on my phone without giving any names out of respect for the Journey members. They wholeheartedly agreed and listened.
My voice began to tighten, and tears started rolling down my face as I read aloud some of the challenges faced by those affected by breast cancer wondering how they were going to manage the ups and downs of breast reconstruction surgery. I apologized for my emotions and brushed it off to fatigue, travel, and dehydration. The surgeons on the panel continued to listen through my feelings with great interest.
The Goodness and Heart of Surgeons
I sat back down and thanked them for listening. My final comment to them was that I thought every surgeon at the conference should have attended this session. I had only been sitting down for about a minute when one of the panelists left his seat on the panel and walked down from the stage to where I was sitting and handed me a bottle of water. Thank you Dr. Jeffrey Janis. You deserve this shout out!
In life, you win some and you lose some. At the end of the day, and in this instance, as I was flying home from the conference, I felt the goodness and heart of the surgeons I met. Sans the first day experience of acting a bit shallow over lack of my speaker badge and mispronunciation of my name, I came away with a feeling of peace and gratitude. The surgeons I met and spoke with were fully engaged when I stood before them in conversation.
As I share my concluding thoughts during the final week of October and Breast Cancer Awareness Month, I want to thank those surgeons for your good hearts and the kindness you have shown. It feels like a definite win.
Those surgeons were lucky to have you speak, Terri. The information you shared with them, from your own experience, and from your Deep C Foundation tribe members, is so important for them to hear. The “good” ones get it, I’m sure. I’ve been doing breast cancer advocacy work with nurse and physician intern students from various universities in the NJ/NY area through an organization called Pathways. We’re a group of about 40+ volunteer Patient Educators who have had Breast Cancer and we share our stories with these students, as part of their Humanities curriculum. I’m always astounded by how much they all say they learn from our various stories. They always tell us that they’ve never had the experience of hearing from the patient, and that what they learn in school is just the health care piece of the picture. Once they hear the whole story of our experiences, they all seem to have a stronger, better understanding of what a patient truly goes through and how it impacts all aspects of our lives: family, work, financial, emotional and physical issues. Health care professionals can learn a lot from their patients and once they absorb that info, they can use it to become better doctors/nurses/HC providers. I’m glad you went, and I sure hope you get the chance to do it again – next time – correct them about your name right away! You deserve to be recognized!! All my best.
Claudia, these words mean so much to me. As someone I have admired for your own patient advocacy work, I applaud you for your tireless efforts to bring awareness, honor, and respect to the patient story. Thank you for reading the blog and your continued support of DiepCJourney!
Kindly ~
Terri
Thank you, Terri. I hope we get to meet in person one day!