Words do matter...: powerfulpatients.org/2019/... - CLL Support
Words do matter...
Thank you.
I couldn't agree more!
I remember feeling upset and angry when people were talking to me about my 'journey' as that implied a terminus and I couldn't think about the end at that stage.
We are not battling, fighting or anything else - we are simply trying to live the best life we can.
Jackie
Thank you! It isn't easy to hit the right spot for anyone living with cancer. It is a personal thing. As Jackie has stated "journey" isn't a good word for her. I use that and see it as what I am on. I have used in talking with other cancer patients, "living with cancer" and been told, "No, I am not living with cancer, it is my enemy, I am fighting cancer."
So, it is a very personal need for some to have the symbology of fighting/war/enemy. What I have learned, is that just as in discussions of politics or religion, if we can modulate our conversations--not be other than who WE are--but when we find a "trigger term" that is not helpful to the person we are talking with, we don't argue or suggest otherwise to where the patient is. In other words we listen and talk with.
Sorry if that is a bit pedanic.
Couldn't agree more ... I have been arguing this for years.
" He/she lost their battle with cancer " is a shameful saying.
' Cancer is a disease not a military campaign '
Excellent article. Experiencing cancer first hand with CLL and with my wife’s ovarian cancer in 2013 and with my Dad who died from colon cancer at the age of 42. Article really makes you think on how words are so Important and do matter.
Bill1288
I get tired of being told how strong and brave I am ?? Would they all prefer I was sitting in a corner crying ! No way !
Colette 🙄
Thank you for pointing me to this excellent article. I especially appreciated this - “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”
I sometimes find myself buying into our culture's idea that illness, old age and death are not a natural part of living. That the fight is more noble than acceptance.
This isn't a judgement about anyone's treatment choices, but like our dear (and dearly missed) Chris, I support our right to fight for treatment when it may lead to increased wellness, or to choose to accept death when that seems to be the right choice for us.
I guess I'm more in the camp of viewing this as a fight against an enemy makes me feel more under control, and I am glad the article put words to that. But I agree that everyone is on his or her own journey and that this type of language isn't helpful for everyone.
I've been toting how bad the war vernacular is for a long time, so kudos to the writer and to us if we choose to eschew the wording too. The author of Emporor of all Maladies: biography of cancer, Siddhartha Mukherjee, explains that the "war" language came about from the first appointed Surgeon General, a retired military doctor, who used the metaphors in the language that HE understood. He started the "war on cancer." If you have not read this book please do, it is one of most fascinating reads. I don't like the word "survivor" either and choose to use "thriver" instead as I have yet to survive my cancer, I've learned to thrive in spite of it.
And for those who prefer, The Emperor of All Maladies was made into a 6 hr documentary series by Ken Burns on PBS. I highly recommend it!
I do think we need to be patient and kind with well-meaning people who speak to us in the language that they understand. I try to look for the intent behind the words.
So true Kathy. People struggle with trying to say the right thing regarding difficult topics such as cancer and sometimes their comments might not be phrased as eloquently as we would like. However, like you I feel it is much more important to look at the intent of a person’s comments and avoid getting caught up with a phrase or word we don’t like.
I try to be respectful with regard to another's perspective. We all view things differently and those points of view can fluctuate based on experiences.
At this time, having CLL is just the cost of doing business for me, and I am grateful for resources like this forum.
Respectfully, "We get what we measure".
JM
I, too, have always cringed at the battle expression and thought this article was excellent. I thought the part about oncologists fighting until the end was spot on, too. Thanks for posting.
NW
I agree Kathy, Hope and JM. I try not to get caught up in the analogies that well meaning people may come up with. That someone is at all concerned about my 'battle with the 'emperor of all maladies' is something to value and embrace as a gift. And we all know that 'you never look a gift horse in the mouth' When I posted to my friends and family, when I was first diagnosed and starting treatment, one of the young people I worked with gave me a comment 'kick cancers butt!' This tickled me so much that now 6 years later when she replied to my post informing of my going back into treatment I told her that I plan to 'kick cancers butt again'!
Since we are all looking at life from different backgrounds and stages and genders... it is understandable that we may see things differently and maybe not understand some analogies or may very much relate to others. For my nearest and dearest I will make a stand if I find some reference particularly offensive, but otherwise just smh (shake my head) and embrace the person and just be on my way, sometimes wondering 'what rock did they just crawl out from under?'
Euphemisms have their place. Especially in polite company. But I can do just as well or better with a hearty 'kick cancers butt Lisa!' because I know it came from the heart. And if I 'loose this battle' with cancer and my gamer son's tell me that I 'played a good endgame' I will be thrilled and full of heart because I know how important that is to them!
Hello! Thank you for shared my this. I agree that we should all adopt the language that best suits us. I took it a step farther and pre-wrote my own obituary so it would reflect my vocabulary. I also constructed my own funeral so it would be exactly what reflected my own philosophy on living and dying. Even included a playlist of the top 12 songs that reflected my life. It was really very neat to take time to do this. Very peaceful and can be updates as I continue to live. Might be worth considering. Best! Carolyn
Thank you.
I have tumbled the same thoughts around in my head for some time.
(I will tongue in cheek add that I can only hope I win my battle with doctors. 😃)
I read an obituary that I reflects my attitude about cancer. It stated that cancer did not beat the ornery fellow since the cancer died when he did, it was a tie. I absolutely loved that!
I thought this article was "right on" point. It is an individual preference that is largely ignored. I believe that Words are the only way we can express ourselves. The trick is not to use words in a way that is hurtful. And if you are the one who is hurt, then try not to use words to retaliate. The old saying is "Sticks and Stones may.....".
Many in the current society have forgotten how to use words effectively, and without causing pain. Thanks.
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