"Survivor Stories/Member Status Updates" forum title - 1245415

On that note, since this is a member forum without as much technical status I think it would be reasonable to give it a personalized name. And it's no secret I'm not a fan of some of the patient terms. Especially the surviving one. D won't I will. I see why it came into use though surprised because it's so inaccurate that I can''t imagine cs and i are the only ones that find it viscerally disturbing.
Janine

I couldn't agree more ladies! Change is always good:)

Lisa

Dear CS, I have not heard from you in quite a while and was wondering how you are doing? Hope things are going OK.

Sorry to hijack this thread...

Myriam xxx

You know what, guys, I am on your side here. I remember so clearly having discussions over terminology with Melissa. She and I both hated the word "survivors", though it is a positive term, which is a feeling we (here) want to perpetuate. But is it realistic, in many of the scenarios? Melissa also HATED referring to this "journey" as a battle or a fight - a term that assumes a winner.

It is not an easy thing to come up with correct, heart felt, non-negative, terminology. I often default to the word "journey", but that feels trite and sometimes belittling.

And for people new to GRACE, and the "new normal's" that this community represents, they are often looking for hope... and stories of survivorship. It is hard for me to feel I am taking that away from these wonderful people. But you are right. It is a tough pill to swallow.

But, let's see what the big man says.... (I mean Dr. West) (and I mean that as the guy in charge...).
Denise

I'll add my voice to certain spring's and others that I also dislike the term survivor. Guess I've gotten used to it though. "Living with cancer" is more accurate for what I'm doing (and I'm not happy about having to do it!).

I vote for Member Updates as a title for the thread.

I agree with Judy, Member Updates is simple and accurate.

I all fairness surviving is what you're doing while living with cancer. However until I entered this world I thought a cancer survivor was someone cured. There may not be anything that everybody as opinionated as we are (which is a good thing is what my mom taught me) can come up with. But as Denise suggested we want to reach out to people who are looking; and cancer and survivor are terms searched for together looking for what we give.

Thanks for your input Denise.

I think there's an answer that will keep these stories searchable and give us all a sense that we fit into a category that feels right.

And cs, tiresome? I don't think so. Not you nor your thoughts.

A quick email from Dr. West shows he agreed with a change to the title, but before settling on "member forums" or "member updates", maybe we should let a few more ideas be thrown about? Let's let the pot simmer for a bit to see if anyone else has ideas?

Ooops - already changed, but can change again as needed:

http://cancergrace.org/forum/member-updates

-Mark

Thanks for being on top of it! :lol:

Isn't it a little early for you Mark? hehe

I remember that discussion. I don't particularly think this is the one I remember but this explains his thought process. I love it.

"I'm also a bit uneasy with the term, but for a different reason. It implies that we're fighting a foreign invader in the same way that we would attack a virus or bacterial infection. Many people find it helpful to think of cancer as an invader, but I don't. Cancer cells are my own cells that have been damaged in some way, possibly but not necessarily by a foreign substance, but which for some reason did not die along with the 50 billion other damaged or "used up" cells in my body that undergo programmed cell death (apoptosis) every day.

While we may need some emergency assistance in the form of chemo or radiation to get control of the situation, the long-term solution is to strengthen the body's processes to the point where they can once again dispose of potentially cancerous cells as they're designed to do. A mind game? Maybe, but whatever mental energy I devote to the cancer issue I'd prefer to place on the positive, process-strengthening side, with the goal of putting that part of my life back on autopilot." From http://cancergrace.org/forums/index.php?topic=7018.0

Aloha,
Janine

The first time I became aware of the term "survivor" it had to do with fundraising. They had a "survivors" tent where patients shared their stories. I thought at the time that the word was terribly inappropriate, especially since one of the organizers referred to herself that way but in the same breath was telling me how hard it was to keep the event going from year to year because the volunteers (formerly referred to as "survivors") kept dying. Maybe the term generates more donations from the public at large, which we certainly need, but I think it also sends the wrong message about the urgency of needing funding to find new and better treatments. Most of us don't survive, and perhaps if more people understood that they would be more inclined to do something about it. I don't think we should imply otherwise. I don't use the term.

I don't like the idea that I'm "fighting a battle" either. In the end it would imply that I didn't fight hard enough to win. I think we give all we've got, that none of us could work any harder than we do to stay a step ahead of the inevitable. I'm okay with "living with cancer." Like "living with AIDS." You don't ever hear the term "AIDS Survivor."

I like the title Member Updates. I think it keeps the other categories free of chatter (and I mean that in the nicest possible way) and we can all find each other more easily just to see how we feel and are getting along. And talk about dogs, and CAKE and dancing!!

With love and admiration,
Debra

I've also been long uncomofrtable with both the battle analogies. A battle is a fight between combatants. Usually, one or both make some kind of choice to enter the battle to fight over something--some ideology, some piece of land, religion etc. On the other hand, cancer is something that happens to a person. While a patient may make choices that influence his/her risk of getting cancer, no one chooses to get cancer. On the other hand, some patients do choose to "fight" the cancer and some patients feel empowered by this analogy. For those patients who feel that thinking of their cancer as a battle makes it easier to do what they need to do, I say go right ahead. For those who prefer to think of it another way, again, I say go ahead. At the end of the day, I guess that I'm arguing for an individualized functional approach to viewing lung cancer--whatever best helps with coping is the "best" way to think about it.

One of my mentors (Weijing Sun, a GI cancer doc) told me once that for metastatic patients I could help a patient to win a few battles, but that we would always loose the war to cancer. Here, the battle analogy really breaks down for me. If I were President, I probabably would rather negotiate surrender than win a few battles before loosing a war--if my country were definitely going to loose, why have more suffering along the way? In contrast, with cancer, "winning a few battles" means living longer and with higher quality of life, goals that I and most of my patients feel are worth seeking.

(to be cont)

I personally do like the term, "survivor." The breast cancer movement popularly defined, "survivor" as someone who is cured of her disease. I'm not comfortable with this definition. First, it's frequently not true. Unlike lung cancer, breast cancer can recur decades after supposed cure. Second, it demeans the dignity of the patient who is succesfully living with lung cancer. Let's imaging that a patient seeks out optimal treatment for lung cancer (say, a clinical trial, perhaps at UNC :) ) and does well. He starts treatment at the age of 71 and lives until 76 with high quality of life until he dies of a heart attack. Was he really so different from someone who was cured? This line of thought will become increasingly relevant as our targetted therapies become more and more effective. We will increasingly have more patients who are not cured in the sense of eradication of all cancer cells, but who are living long periods of time with relatively less toxic targetted agents. I reject the idea that these patients should be viewed as walking corpses living on borrowed time. This kind of thinking is probably the second biggest contributor to the stigma of lung cancer. Rather, I propose that we view these patients more like AIDS patients, or even diabetes patients, who are living with a chronic, but treatable disease. Taken a step further, I would ultimately like us to see such people not as cancer patients, but as people who happen to be living with cancer. I grant that this perspective is very optimistic both of society and of the future of lung cancer therapies, but I do strongly believe that we can get there. On that note, I'm getting back to work on a new maintenance trial.

I like "Member Updates". . .

Laya

Thank you Dr. Weiss for so quickly answering the mail. For others, I asked Dr. Weiss to comment because I so appreciate his thoughtful take on such discussions. and I've missed his input of late.

Like Denise suggested we can use this opportunity to brainstorm alternatives to the accepted terminology. If you don't like it, then what would you prefer?

...

My kids blurb out the words "that is not fair". It really makes me think about our situation where my wife has the medical condition and I am the caretaker....not knowing what the future holds. But then who really knows what the future holds for any of us. I come to realize that our family is facing a situation in space and time, liked what we have done so many times in the past. I can follow my kids' footsteps and say life is not fair. But then what does fairness got to do with anything. Shit happens and we move forward. We have developed lots of life experience and skills to move forward, so I don't see us as survivors but as "onwarders" (if there is such a word).....not that much different than what many people have done in the past, doing in the present, and will be doing in the future......facing the unknowns.

I definitely agree that terminology created about cancer is for someone other than those who have cancer. I suppose battle is an ok term for the doctors who are actually doing a hands on procedure such as surgery wherein they encounter the cancer enemy in the operating war room. But that battle is between the doctor and the cancer. Survivor. Well, hopefully, the doctor survived. The poor patient is just the battle ground. Personally, I feel like a walking-talking cancer machine. I imagine all those cancer cells running around in my body like little ravenous PAC Men. And I think I never could win that game, either. The terminology is to make others feel better. Rather than living with cancer, a more proper way to put it would be to say I am dying with cancer. But, nobody wants to hear that.
I have a story to tell. I have always been honest about my cancer condition. I have cancer. I update people who want to know the status. I have outlived my earliest prognosis so most people think I am in remission (another overused word). I am not. I have cancer. Don't believe me. Can't be walking, working, etc. I am sure many of you have also encountered disbelief. Now the worst. I informed a friend that I have lung cancer with a rare mutation. And, he replied. "you can't keep crying Wolf, no one will believe you when you really have a problem."

So, next person who asked, I said: I feel great! Cause that's all they really want t,o hear.

I think this is a great discussion, and this is a place where I really think we should defer to what the people who make this community want to call themselves and the thread. The many viewpoints we've heard have been very thoughtful and quite valid. I know I feel a bit off with terms like "Survivor", which I really think are derived from hollow marketing efforts. And I share the visceral malaise when speaking in terms of cancer as a journey or battle. We fall to cliches because they're easy...but they aren't apt descriptions. I agree that a journey sounds too trite and saccharine, and a battle does imply that someone who loses just didn't fight hard enough. This is also one of the reasons why I have trouble with people saying that a positive attitude or a healthy diet is they key to doing well. I completely understand the desire to exert some control at a time when there's just a huge amount that can't be controlled, but the reality is that a biologically resistant, aggressive cancer can overcome people with the best attitude and the healthiest lifestyle in the world. Someone who dies of cancer doesn't suffer from a lack of determination or commitment to the right diet.

So no great answers from me, but sometimes it's helpful to do more listening and hope to glean some insights from others here.

-Dr. West

Well, I don't have a problem with using metaphors to describe my illness. I can see it quite clearly, metaphor or no. The word "fight" to me isn't necessarily about combat - it can denote a struggle to achieve or resist something, which are two sides of the same coin, I suppose. "Struggle" is what I do, but that's not inspirational to some. Battle works for me personally, because even if I don't live to 80, I feel like I've gone to the front lines and done the best I could on a personal level, and each length of time I "survive" is a small battle won - for more time, which edges us closer to conquering our ignorance about the disease. Lots of things are battles, or struggles - "love is a battlefield", "if there is no struggle, there is no progress", "there is scarcely any passion without struggle", "all struggle has a global resonance. If not here, then there. If not now, then soon..." But I'm sure we don't want "Struggler's updates" - that's kinda funny :mrgreen: :mrgreen:

Resources (as Dr. West points out in his latest post) are dwindling in this engagement (civil war?) between us and our cells.

I don't know what to call it either, and maybe here our language fails us. I think it's curious that these discussions are called "threads"...

Jazz
"the horror, the horror!"

I like member updates also. It leaves the field wide open for both good news and bad. For me the most important part of this area is to find out how others are doing. I've never much liked those other terms either. --mikem

Jazz, that's it! strugglers update.

I really think you're on the right track, we don't have a good way to say what we feel and words fail us. In fact any words make me cringe and is probably why I decided long ago when writing on this forum about cancer patients I at least usually write "cancer patient" because I don't want to wrap in up in paper that will feel as bad as using as basic terminology as I can find.

and Jazz, thank you for stepping up for the metaphors, especially the battle one, people use them because it helps them get a point across.

So for the record while I belabor these metaphors I should be clear that I respect anyone trying to make a point about lung cancer. No matter the language. So Warrior Princess I love your name. I really do...

In reality I live and use them all the time. Could be why I condone this process. :wink:

Dr. West thanks for letting us choose the name for the forums.

For the forum name generic terms are good for me. It would be interesting and dare I say, fun, if each person creating a thread incorporated his or her unique style.

I'm delighted to read this discussion as I thought it was just me who hated terms like survivor and battle. But I'm not sure about struggling either.

To the best of my ability I am living, not surviving. Some days I struggle though.....

And cancer is my normal - not something I asked for or wanted but something that is. Life isn't fair but as a now defunct prime minister in Australia said, who promised fair?

Let's stick to member updates - clear, simple and no emotive overtones or undertones

Gail

PS. And I absolutely hate the word (if it is one) positivity!

I agree also that people should use what terms work for them ... I tend to overthink. And for me words really hold so much feeling and color. Dr. West mentions hollow marketing efforts, in reference to the overuse of the term 'Survivor", but then, that is what marketing in this arena is all about: softening the edges of the reality of life and the possibilities of disease and death, to somehow draw people in and get people involved who aren't. It is a struggle on many levels. until it becomes personal, people don't know what to do.

It is refreshing to hear so many discussions on what these terms mean to everyone. I had many good discussions with Melissa, but not nearly enough. I wish we could talk now - without the heaviness of her daily attempts at normal (there is that word again). Jimmieruth - I find people tip toe around me a bit sometimes -- still. for fear that they are bringing up a loss that I would rather not think about. But I do every day, and being able to talk about it and read other stories really makes me feel good, honestly. not bad. sometimes sad - but sadness isn't always bad - it reminds us of what we had, and that is something I never want to lose. You need to be able to talk about it all ...........

So keep on keeping on! I like the 'strugglers update', but I think "Member Updates" draws our community to the right place for the right things.

thanks for all the heartfelt discussion...
Denise

CS - "I have cancer but it doesn't have me" was the slogan for an advertisement by my health insurance provider (Kaiser) some years ago:

http://www.youtube.com/watch?v=11zxZoeDFzY&feature=BFa&list=ULFcbib2uQT…

Here is a good article, more opinions on the terminology discussions... http://well.blogs.nytimes.com/2012/09/06/not-a-cancer-survivor/

:wink:
Denise

You are welcome, Certain Spring... and I have to say your summary above is really quite perfect and well put. And I agree with you wholeheartedly.