Once a year?

It seems like I get around to finding this blog about once a year and thinking I need to recapture my thoughts. It usually comes on the tail of a discussion started somewhere else, where I would like to continue but it doesn't feel appropriate given the audience. I need to make my own audience, then I can wax on however I feel. Though that turns it very one sided, doesn't it?

The conversation I talking about is here: http://cancergrace.org/topic/survivor-storiesmember-status-updates-forum-title/page/2/#post-1245562. I have so much more to say...

 Double Trouble - I wish most people could understand and talk in frank terms as she does. and as many of the GRACE community do.  it is refreshing.  and her discussion:

 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.” 

...nails it on the head, I think.  A friend of mine who I was discussing this discussion with suggested the same thing - "living with cancer", as an apt description.

I recently spent a bit of time with a friend of a friend who's daughter has juvenile diabetes.  I find myself just pelting her with questions, because I am so curious and because I want so bad to understand why anyone is dealt a hand of disease in their life.  I then apologized for so many questions and she said: "no - I love it.  most people are afraid to ask".  I would feel the same way.  but most people who aren't dealing with something so similar in their lives are afraid to ask.  It is not easy to know the right questions, and they are fearful they will somehow say the wrong thing.  that leaves those dealing with disease feeling alone and like no one wants to hear or know about the bad.  Only the good.  Like 'Surviving'....


Dr. Weiss also rightly points out that viewing patients as being on borrowed time is not right either.  Survivor is an overused term - but when you strip all of that away, it is a very positive, bright word.  it is full of hope and promise, and the continuation of a life being well lived.  but like many things in our lives, it has been taken for marketing and used to draw people in who are fearful of these unknowns.  But they are the ones that somehow need to understand that (we) can't do it alone.  Meaning funding, or just dealing with any disease.  We need more than just those dealing with disease to help - whether it is funding for a place like GRACE to continue, or it is a bigger animal, like funding for trials, or even bigger - allowing our government to support research and then allow our people to all get the same care by supporting a healthcare system.   Enter the marketing world who sugar coats and draws people in on the goodness of their heart.  Plays on their guilt.  Fundraising is an interesting arena.

In more ways than one, the patient is the battleground - a great analogy... the docs and the cancer are the ones fighting out and trying to win, that patient is just hoping for the positive outcome.  this is from the thread  by jimmieruth,

 But that battle is between the doctor and the cancer. Survivor. Well, hopefully, the doctor survived. The poor patient is just the battle ground. 

Jack mentions hollow marketing efforts, getting back to the overuse of the term 'Survivor", but when you are dealing with a scared general public who have shown themselves to be more comfortable with shiny pretty things than the reality of life and the possibilities of disease and death, how else do you get them involved?  If people would rather watch trainwreck reality tv where the biggest problem is a miscoloring of your fingernails (I clearly don't watch), how can you expect them to give money or want to fund scary things like cancer research or eradicating other diseases?  we dumb it down in the marketing world because we need these people to listen - and the quickest path to those pocketbooks is to make them feel good about their shiny happy words.  but are we just spiraling into more and more see no/hear no evil?  if we don't force people to be smart?
 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, getting back to the overuse of the term 'Survivor", but when you are dealing with a scared general public who have shown themselves to be more comfortable with shiny pretty things than the reality of life and the possibilities of disease and death, how else do you get them involved?   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).  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 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 those memories are something I never want to lose