Wednesday, October 12, 2016

October 12,2016 Chat - Warrior? Fighter? The Words we use...

Tonight's chat topic was Warrior?Fighter? The words we use... . We welcomed our regular #gyncsm physicians, patients, those who had been diagnosed with cancer and caregivers as well as those from other Twitter cancer and chronic disease communities. Forty-four participants in all  created over 2 million impressions during the hour chat. For more chat analytics please click here.

Below you will find tonight's topic questions as well as sample answers. You may find a transcript here. Please scroll to the end of the post for Resources.

T1a: What does the term "survivor" mean to you? Do you use it?

  • I usually say "cancer patients and caregivers." People out of treatment and/or in remission don't seem to mind being called pts
  • I like survivor if it means that you are survivor from the moment you're 1st diagnosed. A lot of surveys say survivor but mean NDP
  • Somedays I feel like a survivor, somedays a thriver, somedays a fighter, somedays just overwhelmed. So personal & so dependent.
  • I don't like the survivor label much. Avoid it when I can, but do use it sometimes due to lack of better word
  • My son's vocabulary quiz "To survive is to remain alive, even after great difficulties"
  • I think that the term survivor can be overwhelming for some patients - can make them feel like a failure if they recur
  • That's the term I always use. It has such a wide definition it seems to encompass all my patients.

T1b: What terms other than "survivor" do you use - for yourself or others?

  • On good days... "bad ass" *grin* RT : T1b: What terms other than "survivor" do you use - for yourself or others?
  • Cancer Experienced - I could go for that
  • some use thriver
  • Survivor replaced the victim language. So it is MUCH better than that!
  • There is always "person". We are so much more than cancer "survivors"
  • I say I'm living with cancer. I want to educate people about chronic cancer. Also I'm a lover not a fighter by nature 


T2: Why are war analogies so often used to describe a cancer diagnosis/treatment? Do you use battle/fighter in conversation? 

  •  I loathe the war metaphors.
  • As a marketer / former nonprofit person I purposely avoid war/battle. Though fundraisers will tell you those get the money.
  • Hearing it said someone lost her battle to cancer, is like fingernails on a chalkboard to me. Hate that.
  • The war analogies work for some - to "fire them up" - but for many it can feel like a failure if you frame it as a WIN/LOSE
  • War metaphors, we picture ourselves standing shoulder to shoulder. Survivor image is Robinson Crusoe or someone in a lifeboat.
  • it especially saddens me that the war language makes hospice or even palliative care "giving up"
  
T3: What words do you use to describe your experience with cancer? How do you feel about calling it a journey or quest?

  • going with Cancer Experience again
  • I think journey can be good because it gives the idea of a beginning and an end - not win or lose
  • I never use journey
  • It has been a journey for me – with bumps and detours and flat tires and a great appreciation for things - the amazing views
  • both cancer Journey and cancer Experience seem to honor individual differences
  • a trek? maybe it needs its own term - isn't there a special term for those who climb Mt. Everest?
  • I say my cancer journey, experience or mostly my life with cancer (I think that started the 3rd time I got sick).
  • There definitely needs to be a verbal space for those who are living with metastatic disease, with cancer as a chronic illness.
  • I love (& hate) this tension between need for individual words vs. research needing consistent labels 

T4: What cancer terms or labels do you have a negative reaction to and why? 

  • Victim, sufferer, lost the battle - anything that makes the person in the situation sound downtrodden
  • The lost her/his battle to cancer. One of my top cancer language pet peeves. Insulting (IMO)
  • Battlefield analogies. Victim. Man I hate those
  • I try to avoid saying "your" cancer to a patient, instead say "the" cancer when talking about disease status
  • I cringe at Victim.
  • I am also a big hater of the words Prevent and Prevention. What we can do is reduce risk. Risk reduction
  • the lost/battle thing is more obvious when you think about calling someone a Loser
  • And don't get me started on the cancer is a gift thing


T5: What would you like to see from the media and cancer groups when it comes to the words we use to talk about cancer?


  • Just deeper understanding in general. Many terms are very superficial or show misunderstanding.
  • when someone dies, just say it. Died from colon cancer. or whatever. Truth telling. Plain & simple
  • Could cancer groups be more proactive w/ media to start changing way we speak about cancer? AFSP very active w/ media & suicide
  • Take cue from person with cancer. Use words she/he seems to like. Ask if certain words make them uncomfortable
  • Media - be responsible when reporting celebrity cancer news - whether deaths, remission, risk-reduction. Take some time.
  • Cancer groups - Think twice about battle terms and be sure you aren't excluding those who may need you most
  • few journalists specialize in medical reporting- if interviews are not quoted, risk to misinterpret information
  • Understanding how someone finds strength from life-threatening challenges provides insight on empathethic language
  • I loathe the "silver bullet" language - cancer is so many different diseases. One success does not equal a cure for all 


Remember if you are a patient or caregiver you can continue this conversation on the Smart Patients platform at
https://www.smartpatients.com/gyncsm .


We look forward to see you next month on Wednesday , November 9, 2016 as we chat about Your Health Care Team Members. 

Dee Sparacio
Co-founder #gyncsm


RESOURCES


Andrew McDonald: The war of words about cancer - BMJ  http://blogs.bmj.com/bmj/2016/08/10/andrew-mcdonald-the-war-of-words-about-cancer/

Marie Ennis-O'Connor: Mind Your Language: Why Words Matter - Dr. Brian Stork blog http://www.drbrianstork.com/blog/words-matter/
 
Susan Gubar: Not a Cancer Survivor - NYT http://well.blogs.nytimes.com/2012/09/06/not-a-cancer-survivor/

Nancy Stordahl: Nine Cancer Language Traps - Nancy's Point blog http://nancyspoint.com/nine-cancer-language-traps/
Jen Sotham: The Language of Helping a Loved One With Cancer - Cure  http://www.curetoday.com/community/jen-sotham/2016/08/the-language-of-helping-a-loved-one-with-cancer?p=1
Dee Sparacio: The Words I Use - WomenofTeal blog http://womenofteal.blogspot.com/2014/11/the-words-we-use.html

Blog | Why I Don't Like the Phrase Cancer Survivor http://www.cfah.org/blog/2013/why-i-dont-like-the-phrase-cancer-survivor

Blog | I did not fight cancer http://www.blogher.com/i-did-not-fight-cancer







Thursday, October 6, 2016

Warrior? Fighter? The words we use... Oct 12, 2016 Chat


Over the past few years we have noticed more men and women diagnosed with cancer and their caregivers/loved ones speaking out about the words used to describe their situations. Some people with metastatic disease do not see themselves as survivors while others do. Some who had surgery but no chemo don't call themselves survivors. Some are unhappy when they read that a friend lost their battle, while others consider themselves warriors. We understand that there is no right or wrong term to use, but we feel it is important to share the thoughts and feelings about these words with each other and our health care providers so we can understand each other better.

Our patient community partner, Smart Patients (@Smart_Patients), recently conducted a survey of 1,000 cancer patients on their platform. In response to the question, "How do you feel about the term 'cancer survivor' as a description of someone with cancer?", one third of the respondents chose negative, one third chose neutral, and one third chose positive. We look forward to having Smart Patients join us to share more about what they learned from their diverse community on this subject.

All those diagnosed with cancer, their caregivers, friends and family, as well as their health care providers, are invited to join us on Wednesday October 12, 2016 at 9pm ET to share your thoughts and feelings.

The topic questions are:

T1a: What does the term "survivor" mean to you? Do you use it?
T1b: What terms other than "survivor" do you use - for yourself or others?

T2: Why are war analogies so often used to describe a cancer diagnosis/treatment? Do you use battle/fighter in conversation? 

T3: What words do you use to describe your experience with cancer? How do you feel about calling it a journey or quest?

T4: What cancer terms or labels do you have a negative reaction to and why? 

T5: What would you like to see from the media and cancer groups when it comes to the words we use to talk about cancer?


To get ready for this chat, we have been gathering viewpoints on the words we use about cancer. We hope you have a moment to read through these essays.

Andrew McDonald: The war of words about cancer - BMJ

Marie Ennis-O'Connor: Mind Your Language: Why Words Matter - Dr. Brian Stork blog



We look forward to this lively discussion. Remember, we are a community that respects each others' choices of how to describe a life that includes a cancer diagnosis. 

See you on Wednesday. 

Dee and Christina
Co-founders #gyncsm community