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Cancer Narratives: Virtual Loss, Real Pain

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Using scientific research as a springboard for discussion, CKN is distilling this research into practical narratives that will improve the quality of life for patients and offer deeper understanding and connection for physicians.  Please join this Doctor-Patient conversation about Virtual Loss.

 


by Anne Marie Cerato, Living with Cancer, CKN Young Adult Section Editor

After I was diagnosed with cancer, I longed for connection, someone somewhere that could tell me I wasn’t alone. I found my tribe online. Actually I found a few tribes because my experience, like many out there, didn’t fit a neatly tied up definition of the cancer experience. I wasn’t just a young adult, or just a lung cancer patient, but a young adult with incurable ALK+ lung cancer. So eventually I found what I was looking for. I cannot tell you how powerful it is to connect with people who have walked in your shoes.

SunsetReflectionIn many instances I have never met the people I talk to. We tweet, chat, post to web boards, blog, etc. but in those communications we have forged a bond of strength, empathy, support and friendship. In all of my interactions with others like me, whether in person or online, I find that these patients have an uncanny ability to cut through the niceties and small talk and really get down to the humanity of this disease. They know the fear, anxiety, sense of loss, empathy and mutual respect for another’s journey, because they too have been through it. It is because of that shared experience that we connect on such a profound level. I see myself reflected in them and they see themselves reflected in me. It is a connection that many of us don’t have with even our loved ones, because as much as they love and support us, they  simply don’t know what it is like to live with cancer.

 

Being a part of these communities is such a privilege. So often we share things with each other that we can’t share with even our closest friends and loved ones. It is truly a unique and beautiful thing to have such friends, but these relationships come with a price. It is the double-edged sword of sharing such deep connections – the grief and sense of loss when one of our friends passes away.

 

Someone asked me how I can be so sad for someone I’ve never met? For me, the answer is simple. I am mourning for them, their families and friends. I am mourning the loss of potential happiness and love and life that could have been. I am also mourning for myself because at some point it will be me. When one of our friends dies, we are reminded very explicitly that we too are vulnerable. For a brief time, the light and fight and hope we have nurtured are extinguished and we are broken. The loss of “virtual” friends results in a very real sense of loss and sadness. We should treat these feelings the same way we would if we lost a “real” friend. Feel the sadness, talk about our feelings, honour our friend’s memory, and if needed seek support, within our communities and outside of them.


AnneMarieCerato

Anne Marie is a 36 year old lung cancer survivor. Originally diagnosed at the age of 30, she put her career as an educator on hold for treatment. After experiencing a recurrence at 32 she was forced to face what it meant to be incurable. Since then, she has become a patient advocate for both the young adult and lung cancer communities. She has spoken internationally about her experience as a young adult living with lung cancer in the hopes of changing the public’s perception of the disease. Anne Marie currently volunteers as a peer supporter and is a sitting board member of Lung Cancer Canada. “My goal as CKN’s Young Adult Editor is to represent the whole cancer experience and the range of challenges young adults face at all stages of the cancer journey, from diagnosis to remission to end of life.”


 

A note from Dr. Don Dizon

“How can you waste your time on that?”

It’s a common enough question whenever I am writing a blog or checking out what’s happening on Twitter. I know it should offend me – but it doesn’t. I just shake my head, and whisper to myself, “if you only knew…”

Most of the time those who ask me that question stick around for an answer, nodding understanding as I extoll the virtues of social media, until the conversation switches to a different subject or the inquisitor moves on to talk to someone else. I wish I could say my enthusiasm for social media was infectious, but I do not delude myself in believing that. So many of my peers see it as frivolous, with little professional value.

But, if only. If only they understood the power of social media, the support, feedback, and connections that can develop online, and the people you can connect with, all walks of life, unhindered by geography. I have met so many incredible people on Twitter, for example, and some are folks I interact with on a regular basis. We’ve never met in person, and maybe I wouldn’t go so far as to call them personal friends per se, but they are something. I call them Twiends and when something happens to any of them, the pain can be very real.

In the accompanying blog, someone with cancer explains this connectivity better than even I could ever hope to. It is a journey online for folks that share a similar history of ALK+ lung cancer. It is a quest to feel less alone in the “real world”. She tells of the tribe formed from within an online community from which support and information flow – patients experiencing what it is like to live with cancer, together, virtually. This patient goes on to explain the pain of loss for a member of this tribe, the sensation of sadness and the pressing reminder that they are too vulnerable.

I don’t have cancer, but as an oncologist, I count many impacted by cancer as part of my own tribe. We’ve followed each other for years, and I’ve been a witness to their trials and tribulations of ongoing treatments in hopes of cancer control, if not cure. I have read their posts on side effects experienced, hospitalizations required, and the joy of “sharing something beautiful”. And I have been notified when one dies, have felt that loss, and even have fought back tears. It no longer surprises me to feel this way, because I now realize that friendships are possible through a virtual connection, and those friendships are as real as any in my own life.

So, for those who don’t “get it”, I say, that’s too bad. Because, you don’t know what you’re missing.


 

 

DonDizon

Don S. Dizon is board certified in medical oncology and is the Clinical Co-Director of Gynecologic Ocology at the Massachusetts General Hospital (MGH) Cancer Center, where he is also the Founder and Director of the Oncology Sexual Health Program at MGH Cancer Center. He is an Associate Professor of Obstetrics-Gynecology and Associate Professor of Medicine at the Warren Alpert Medical School of Brown University, and is pending a similar appointment at Harvard Medical School.

In addition to his academic duties, he is Deputy Editor of Gynecologic Oncology at UpToDate and will serve as the Editor of Principles and Practice of Gyneologic Oncology. He has published over 100 papers, authored multiple books, and continues a column for ASCO’s social networking site, Connection, for which he received a Grand APEX award for Electronic Media in 2013 and an Apex award for a single blog post in 2014.  He participates actively on social media, including on Twitter (@drdonsdizon), Instagram (drdonsdizon) and the MGH Cancer Center blog.

 

 

 

 


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