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Tag Archives: Cancer

Andrea Wilson @BlueFaeryLiver helps cancer patients use their stories for advocacy

by Dr. Robin McGee, CKN Editor, Survivor, Advocate

 

“Is telling your story advocacy?” – it is a question we have raised before in this CKN Patient Advocacy Blog. This question has prompted a series of blogs profiling organizations that promote sharing one’s cancer narrative as a way to improve care for others.

 

Blue Faery: The Adrienne Wilson Liver Cancer Association is a nonprofit corporation whose mission is to prevent, treat and cure primary liver cancer, specifically Hepatocellular Carcinoma (HCC), through research, education and advocacy.

 

The founder is Andrea J. Wilson, and, like many patient advocates, she has her own story.

 

Andrea was only 22 when she became the legal guardian of her 8-year-old sister Adrienne. She navigated the joys and challenges of being both sister and parent to her beloved Adrienne who called her “Sissy.” But when Adrienne was diagnosed with HCC at 15, they both were catapulted into the foreign and confusing world of cancer. Andrea was shocked by how little information they were given, how limited the treatment options were, and how scarce patient support resources were. “We had no access to anything,” she remembers, “records, information, support – we were on our own.”

 

One year after Adrienne’s death, Andrea found herself drowning in a pool of grief. She thought volunteering for a liver cancer organization would help her. To her surprise, there was not a single charity devoted to fighting HCC in the United States. With little experience but lots of passion, she founded Blue Faery. The incorporation date of December 19, 2002, which is determined by the state, marked the eighth anniversary of Andrea receiving custody of Adrienne.

 

In addition to its work in developing patient education resources and encouraging research, it has a mandate for patient advocacy. Among its goals is to facilitate contact among patients with Hepatocellular Carcinoma, their families and healthcare providers for the purposes of support, exchange of knowledge and participation in clinical trials. Also, it offers the Adrienne Wilson Spirit Award (AWSA) for HCC patients “who share Adrienne’s spirit, strength and courage” – those that advocate for themselves as well as others.

 

But Andrea and Blue Faery go beyond recognizing patient advocates. They work at forming them. Via their online survey, patients are invited to tell their story for Blue Faery’s cancer patient advocacy ebook. Since cancer patients face many of the same issues, Andrea is working with current patients, survivors and caregivers to create guidelines to help newly diagnosed cancer patients. True stories will be used to illustrate specific points (e.g., get a second opinion). Though Andrea is creating the book, she feels it is written by patients for patients. Andrea’s favorite question to ask is, “What is the #1 thing you wish you had known about your illness/treatment that you want other patients to know?”

 

Andrea is taking on another challenge this year: educating the public on the causes, symptoms, treatment options and prevention of HCC by sharing Adrienne’s story in detail. On May 15, Andrea is introducing her unpublished memoir Better Off Bald: A Life in 147 Days as a video series and podcast. Andrea will tell the story in real time the way it happened to her and Adrienne 16 years ago. For example, Day 1 is May 16, 2001 and that episode will air on May 16, 2017. The serialized nonfiction podcast and video series will run until October 16, 2017.

 

Since Blue Faery was founded 14 years ago, Andrea has seen how patient connection with each other is the tinder that lights the fires of advocacy and change. In addition to the patient advocacy ebook and podcast/video series, Blue Faery is launching its online patient forum for HCC patients, survivors and caregivers this fall. You can sign up now by going to http://www.healthunlocked.com/bluefaerylivercancer/

 

Linking families together helps them underscore their common needs and aspirations. Once patients and families are in dialogue, advocacy arises as a natural next step.  According to Andrea, “Numbers don’t cause change; personal narratives do. In the end, we all become stories.”    

 

Adrienne would be so proud.

 


 

 

RobinMcGeeDr. Robin McGee (The Cancer Olympics, Twitter @TCOrobin), is a Registered Clinical Psychologist, mother, wife, educator and friend. Living in Nova Scotia, she has worked in health and education settings for over 25 years. Since entering remission, she has been very active in advocacy, mentorship, and fundraising on behalf of cancer patients. In particular, she has been involved in provincial, national, and international initiatives aimed at improving standards of cancer care. In 2015, she was awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage.  Robin was recently named the 2016 recipient of the Sovereign’s Medal for Volunteers from the Governor General of Canada.  Her book The Cancer Olympics has won five literary awards, and was recently listedamong the best 55 self-published books of 2015 by Kirkus reviews. Proceeds of sales go to cancer support programs. The Cancer Olympics is McGee’s first – and hopefully her last – memoir about her cancer experiences.

The Cancer Olympics is available from Amazon and Indigo. Buying from the FriesenPress Bookstore maximizes the donation to cancer support programs.

 


 

Giving Survivors a Voice through Podcasting: the Maverick Lee Silverstein

LeeSilversteinby Dr. Robin McGee, CKN Editor, Survivor, Advocate

 

Even one person can make a difference.

 

Lee Silverstein was diagnosed with stage II colorectal cancer by routine screening colonoscopy at 50.  He had been married only 30 days when he learned it had metastasized to his liver and later, his lungs.  Devastated, he was plunged into years of treatment: a liver resection, chemotherapy, and ongoing radio ablations.

 

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“Right to Try” is a flat out lie!

arthurcaplanby Arthur Caplan, Medical Ethics, NYU School of Medicine

 

The opposition to Federal Right to Try legislation is not as vocal as it should be.  After all, who wants to oppose the right to try for those dying from cancer and other ailments?  Not Vice President Mike Pence who has been promoting a Federal law for months https://www.bloomberg.com/news/articles/2017-02-08/pence-piles-on-drugmakers-with-push-for-right-to-try-regulation.

 

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Building on Strengths to Face Challenges: Understanding Indigenous Cancer Survivorship

ChadHammond1by Chad Hammond, Roanne Thomas, Wendy Gifford

 

“I call this quilt my ‘Eagle at Rest.’ This is me, new and improved after going through cancer. I have the creativity now.  I feel really connected to who I am again.”

 

Karen’s words and her quilt convey her feelings of strength and her experience of transformation after breast cancer.  The ‘Eagle at Rest’ was the final quilt she discussed during a sharing session associated with our study.  As Karen discussed her collection of quilts, she described the challenges she faced from diagnosis onward.  All of her quilts contained elements of spirituality.  Strengths such as spirituality, along with various challenges, represent key themes of our interdisciplinary team’s qualitative exploration of cancer experiences among First Nations and Métis peoples in Canada.

 

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10 Things not to say to a Cancer Survivor

I first met Drew at Stupid Cancer’s 2014 OMG Summit in Vegas and then again at various conferences over the following four years. I was struck by his intense curiosity and willingness to learn everything he possibly could about the AYA cancer community, in which he included not only survivors, but caregivers too. Over the years we have often chatted about the ever-evolving language surrounding the experience of cancer, and the joys and challenges of communicating within it. As a pithy way of sharing those conversations with a wider readership, I have asked Drew to create a Top 10 List: What Not to Say To Someone Living With Cancer. Have at it, Drew!

 – Pat Taylor, CKN Editor

 

 

drewbologniniby Drew Bolognini, Caregiver/Advocate/Videographer/Editor

 

To begin with, let’s get one thing straight: I’’ve been as guilty as the next guy of saying the wrong thing at the wrong time. I still make mistakes. We all do, but I believe we mean well, really. I hope this list will make us all smarter.  Well, the rest of you readers anyway. I’m not sure anything can be done about me.

 

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Part 3 Hospice Series: The Final Ride “Home”

karenhinesserenityroomby Karen Hines, Caregiver

Read Part 1, Part 2

 

Thursday late morning Cassie said “see ya later” to the staff while the ambulance crew wheeled her to the elevator.  Cassie smiled, the nurses returned the smiles amongst tears, we even snapped a quick group picture.  Cass had written on one of the hospital’s white boards earlier that week, “Don’t be afraid, just believe.  Mark 5:36.” She pointed to it as she rolled past.  I tried to smile, but like a zombie, I slowly followed the gurney. Chris and the kids stayed back with our social worker Kathleen.  She spent some time discussing the emotional side of hospice and the idea of “dumping circles”.   She wanted to make it very clear to us that Cass was at the center of the circle, the rest of the Hines 5 were in the next circle, followed by Ashley’s almost fiancé, Jeff, along with the rest of our immediate family and close friends.  The final circle was “everyone else”.  Only support goes “in” and fear, whining, complaining etc. is dumped “out”.  This simple concept was how we were to control what was about to happen at our house for what would be the next 40 days.  Kathleen made it very clear that it is our job to protect each other.

 

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