Showing posts with label survivor. Show all posts
Showing posts with label survivor. Show all posts

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







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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
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Wednesday, April 13, 2016

Re-envisioning Ovarian Cancer Survivorship -April 2016 Chat

Tonight our guests were Massachusetts General Hospital and Harvard Medical School's Dr Don S Dizon (@drdonsdizon) and Dr Teresa Hagan (@TLHagan) . We discussed various aspects of ovarian cancer survivorship with our 43 participants. More chat analytics may be found here.

Below are our topic questions with a few responses. For the complete transcripts please visit this Symplur page.

T1a: What does survivorship mean to you? What is it to be an ovarian cancer survivor?
  • Survivorship in all cancers is defined as any time after diagnosis.
  • Learning to live one's best thru treatment & beyond despite uncertainty, loss of control that ovca dx brings
  • survivorship is defined by the individual. If they like the term
  • Survivorship seems so straightforward, yet it's so subjective and personal
  • Although "survivorship" is defined, everyone interprets differently

T1b: Do you use the term survivor? If not, what term do you prefer?
  • My wife prefers the terms "Experienced cancer" She's an 8 year CML survivor still in treatment. She doesn't like "survivor"
  • I use the term remission. After all I have researched it makes the most sense to me
  • While in tx for 1st recurrence questioned if I really was "survivor," Decided I am as long as I am breathing in & breathing out
  • I'm in search of JUST the RIGHT word to replace 'survivor', personally; I am a well person with a history of cancer.
  • think that "survivor" has baggage for many because it has been linked with NED, so some folks w/mets feel left out of term.
  • everyone should feel free to use whatever word fits best for them. Too much pressure to be positive, to fight & survive
* note: The October #gyncsm chat topic will be on the terms used by those diagnosed with cancer. 

T2: What needs and concerns did you have when you were first diagnosed and treated? How were they addressed? What was lacking?
  • I certainly hear from some of my clients that the mental health/emotional coping wasn't addressed as fully as they needed.
  • Things happened very quickly first-line. No major complications. Lots of concerns AFTER tx ended. Thank goodness 4 support grp!
  • I feel what is missing is more stories of women living with OC. When I was first diagnosed I was sure I would not survive
  • Just because many are still alive doesn't mean they're doing well. #QualityOfLife issues are minimized.
  • I think honesty is lacking in those up front days with regard to the spectrum of emotions: shock, grief, loss, fear, panic.
  • Women seem to seek first to know they are not alone and also practical concerns that come with treatment.
  • Most lacking was when treatment ended the first time. I was a rudderless ship. Looked for other women dx for support
  • palliative care needs to be integrated with the entire experience

T3: How was the topic of recurrence addressed with you? Did you find it helpful or not helpful at the time - and now looking back?
  • Recurrence is such a hard topic, but I've read too many stories of women who felt slammed b/c it wasn't discussed at all
  • It was addressed but I was told the likelihood was considerable. When I wanted to remove my power port I was asked why.
  • so worried about trying to figure out how to avoid recurrence and survive, what we really need is help to focus on living
  • Discussion about weight is an opportunity to impact risk of other disease and length of life 
  • thinking of the experience as chronic is so important regardless of disease state

T4a: What are your needs and concerns now? (After recurrence or As you live past diagnosis and initial treatment of ovarian cancer)
  • Now that third remission is 8+ years, distinguishing btn symptoms indicating another recurrence and normal aging process
  • 7 years from recurrence Still worry. Then there is  Chemobrain and neuropathy
  • Was far more afraid of recurrent ovca that I had, than new cancer that MIGHT show up 10 years down the road, fast approaching

T4b: What issues - physical, emotional or other - currently give you the most difficulty?
  • Need clear guidelines 4 long-term remission after multiple recurrences follow-up-scans, CA-125. GynOnc & MedOnc opinions differ
  • Leg pain from carb/taxol still present. Issues with my sleep. 6 months post chemo. Told leg pain was a chemo gift and would stay
  • Knowing reporting ANY gyn symptom gets me a ride in a machine, concerned w/past rads exposure (25CTs 5PETs +rads for BreastCA)

T5: What actions have you taken in living past your ovarian cancer diagnosis and treatment? Were you given a Survivorship Care Plan?
  • Serve ovarian cancer community as research advocate and provide peer support. I was not given ovarian cancer survivorship plan
  • Refuse to let ovarian cancer define who I am. Take frequent breaks from being all teal to being just me
  • Went back to running. Completed two 5ks in last two weeks. Working on my diet and trying to find ways to reduce stress
  • Don't always have to be a survivor. Sometimes its good to just be you
  • Lynch team at Dana Farber gave me a Lynch plan. No other plan given except come back every three months. I have to call and book

We always end our chats by asking participants to complete the phrase "Today I learned..." (TIL). Here are a few from today's chat.

TIL: Survivor is not necessarily the term of choice. Need to continue to work on the language around this for gyn cancer patients
TIL there is still room for growth in making sure that all #gyncsm patients feel that their mental health & QOL are supported.
TIL We still have work to do to improve gyn patient education on side effects emotional needs 
TIL dismissal of pt needs, fears and lack of transparency in Communication impedes pts attainment of quality of life


We appreciate the support and RT's by our followers especially OCRFA, NOCC and SGO.

Do you want to join in the conversation or continue to discuss this topic? Join us on Smart Patients at https://www.smartpatients.com/gyncsm

Our next chat topic will be "Getting Social with Your Health". Join us will special guest @teaminspire on May 11 at 9pm E.

See you then.

Dee
#gyncsm co-moderator

Link shared during chat
Living With Cancer: Coming to Terms by Susan Gubar
http://well.blogs.nytimes.com/2015/01/22/living-with-cancer-coming-to-terms/?_r=1




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Thursday, January 15, 2015

Survivor Stories: I Want To Talk - Maria's Story

This month, Cervical Cancer Awareness month, we are pleased to share the stories of cervical cancer survivors. As Cervivor School 2015 begins today in Austin,  Texas, we share Maria's Story. 

 Dee

I Want To Talk

Sometimes I wonder why people are so quick to let the world know their bra color to support breast cancer, change their profile picture to a cartoon character to raise awareness about child abuse, or even take an ice bucket challenge in support of ALS without knowing what ALS is, yet few talk about the issues itself.

So you posted your bra color on social media; did you talk to someone about breast cancer prevention or monthly self-exams? Probably not.

Your profile photo is a cartoon character; did you talk to your friends about child abuse, or volunteer your time to a charity that helps children? I dare say most of us didn’t.
The famous ice bucket challenge… How much money did you donate? Since taking the ice bucket was the alternative to donating money I’m going say that very few people donated any money for research.

Despite that, it seems so much easier for people to do these things than talk about Cervical Cancer. It makes me realize that despite how progressive and evolved we think we are (a society that fights for a woman’s right to choose, marriage equality, and other things we wouldn’t have dared to think about in past years), there is still stigma surrounding HPV and Cervical Cancer.


Well, I want to talk. I want to talk about HPV and Cervical Cancer. I want to do more than just raise awareness. After all, you already know Cervical Cancer exists; I want to bring the topic to the open. I want to share what I know, what I lived, so you and your family and friends don’t have to go through it.

Most people don’t think they will be affected by HPV and/or Cervical Cancer until they hear the dreaded words “You have cancer”, or see a friend fighting for her life.


In the last few weeks I’ve heard people tell me “My daughter won’t get HPV because she is a good girl, she’s not going to have pre-marital sex” or “This is the first I’ve heard of HPV” or “I haven’t had a pap smear since I had my last baby who is 7 years old now.” To me, that is scary as hell, and that’s why I feel the need to talk about it.

HPV and Cervical Cancer can affect anyone, and I mean anyone. I’ve known women who’ve had only one sexual partner get HPV, and prostitutes that tested negative for it. If you think this is a disease of the promiscuous, just as AIDS was thought of in the 1980s, think again.
If you have a vagina, you can be affected. Guys, HPV touches men too. Ever heard of penile, anal, or oropharyngeal cancers?

At least 79 million people are estimated to be infected with HPV; most of them don’t even know it. It is a scary number, and yes, it is a scary virus that can have devastating consequences. However, there are things that you can do to protect yourself and your children from the risks of HPV and Cervical Cancer.

January is Cervical Cancer Awareness Month; which is why I’m hosting a screening of the film “Someone You Love: The HPV Epidemic” in Milwaukee, Wisconsin. 
Come see the movie. Invite your significant others, friends, daughters, sisters, brothers; make it a group outing! Imagine if 100 people came to the screening… that would be 100 more informed people in the area; 100 individuals sharing with their families and friends what they saw and heard. It would translate into more people taking control of their health.

Come, be informed, be empowered. We can break the stigma. We can take action.
We can eradicate Cervical Cancer!


Maria Franklin is a 15-year cervical cancer survivor who is excited to be attending Cervivor School.
This post originally appeared on the Cervivor blog. Re-posted with permission.
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Monday, September 8, 2014

Gyn Cancer Awareness Month Stories: Tina , Ovarian Cancer Survivor

During September, Gynecologic Cancer Awareness Month we will be sharing the stories of survivors of gynecologic cancers.

We are happy to share our first story with you. Meet Tina Rangel, an ovarian cancer survivor.
(Please click the image below to enlarge.)



Thank you Tina for sharing your experience with the #gyncsm community! 

Are you a gynecologic cancer survivor who would like to share your story with our community? Please send it to us at gyncsm@gmail.com. Feel free to send a photo along with your story. 


Dee
#gyncsm co-moderator

Read another survivor story: "My Trifecta" - Joanie's Story
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