Follow Us Here:

Cancer Knowledge Network

Cancer Knowledge Network and Current Oncology are proudly published by Multimed Inc.
0
Menu
Advocate - Educate - Innovate

Tag Archives: Cancer

Resolutions of a Cancer Doctor

The following article appeared in the New York Times on January 4, 2018.  After his mother received a cancer diagnosis, the author, Dr. Sekeres, made a few resolutions for his own practice, after seeing cancer from “the other end of the biopsy needle” as he puts it.

 

Resolution No. 1: I will never again make the flippant suggestion that it should be easy for a parent to just stay with his or her child while going through chemotherapy or surgery. Nor will I be surprised when conflict or non-adherence arises from such an arrangement.

Resolution No. 2: I will not be cavalier in suggesting that patients who live at a distance see me when they would be visiting their families anyway over holidays or for their grandchildren’s birthdays. Happy occasions should remain exclusively happy, especially when cancer may limit the number of such occasions that remain.

Resolution No. 3: I will convey test results as soon as I enter the exam room. A follow-up appointment that I consider “routine,” with low chance of cancer recurring, is anything but routine to my patients and their families.

 

Too often, the patient perspective is lacking at the bedside of cancer patients and their caregivers.  Through no fault of their own, many healthcare professionals are not privy to the issues patients face during their cancer journey.  Unless they’ve been through it personally, physicians simply aren’t aware of the many ways they can ease the cancer burden for their patients, often in the smallest gestures.

Our newly appointed “Patients Included” status affirms our commitment to including the patient voice in our published material.  We thought this article would be of interest to our readers.  Please share!!

 

Read the full article here:  Resolutions of a Cancer Doctor by 

Further reading:  When the Doctor’s Mother Has Cancer by 

 


Testicular Cancer Series: Oh Testicular Cancer, How I Hate Thee

danduffyby Dan Duffy, Survivor, Advocate, Author

 

 

“I cheated with my cancer.”

A friend of mine said that to me once, feeling that she somehow didn’t really go through cancer because hers was caught so early, with no chemo or radiation necessary.

“So the double mastectomy doesn’t count?” I asked, needling her. (Cancer patients can do this to each other.)

Continue reading

Writing Reflections about a Cancer Journey

by Karen Y. Barnstable

 

Did you know that we have 50,000 to 70, 000 thoughts per day, and 35 to 48 thoughts per minute? Many of these thoughts are insignificant and fleeting, but many others are very significant and meaningful. They come from our values and beliefs, and form the core of who we are as a person. They guide our daily decisions. One of the best ways to recognize and capture the useful thoughts is to write them down. As soon as they are on paper, they are ‘trapped’ and can be edited and reframed. They can play a stronger role in helping us understand and make sense of our experiences in a positive way.

Continue reading

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 30 years.  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. She has been awarded the Canadian Cancer Society’s highest honour, the National Medal of Courage.  Robin was also decorated by the Governor General of Canada with the Sovereign’s Medal for Volunteers .  Her book The Cancer Olympics has won seven literary awards, and was listed among the best 55 self-published books of 2015.  Proceeds of sales go to cancer support programs. The Cancer Olympics is available from Amazon and Indigo.  She is currently in treatment for a recurrence of her colorectal cancer.

 


 

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.

 

Continue reading

“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.

 

Continue reading

Page 1 of 81234...Last »