Putting On That Happy Face!!!!

Bridget and barbe, I think we all get frustrated with people who think once the worst of treatment is behind us, we are "all better" and "back to normal".  I think that mostly people mean well, they just don't get it.  I don't know if you CAN get it if you haven't been through it.  Our lives will never be the same.  Everything has changed for us. Our bodies have betrayed us and we will always  be looking over our shoulders. 

 I think people say some of this stuff because they don't really know what else to say. they are just trying to say something to alleviate the awkwardness they feel or maybe, if they are nice, to make us feel better.  

Cancer scares the heck out of people. I think the people who act like they think life is back to normal for you, hope against hope that it is. If they are your loved ones, they can't bear the thought that cancer could come back any more than you can.They are just trying to push that possibility away. For acquaintances and such, they know if you got cancer, they can get it too.  They want to believe you can be cured and then just merrily go on with your life, because that's what they hope would be possible if they were in your shoes.

Angela

Bridget:

You are not alone in your frustration with people who do not want to see how dramatically we change after treatment. A friend of mine always focuses on the mastectomy thing..when that is the least of my personal issues. Losing the sense of being safe in your own body, losing the full use of my hands due to lymophedema: those are the things that are not possible for me to shake. A therapist told me yesterday that shaking these feelings is probably not the way for them to take a better place in my life. I know I can't go around as angry and frustrated as I have been, every time a person makes a comment on my mummy wrappped arms. My favorite this week came by way of an older woman who held a door for me in the mall: " looks like somebody has been beating on you!"  No ma'am, but I could give you a smack or two........

No answers here, just letting you know that you are not alone and that your post made me feel less alone tonight in all this mess...

Moogie 

I too get frustrated by people's insensitive, but more often, simply unthinking comments.  I also live in constant fear that it will come back.  So I "get it".  But here are some of the things I try to do to get me out of the ugly place.....

 - Yes it may come back, but truly odds are better that it WONT than it WILL.  I think we all feel like if our bodies betrayed us before, it can and will happen again and we are going to be prepared this time by thinking the worst.  BUT that doesnt and wont help us - all it will do is ruin today with fear.  So what I try to do is live like it MAY not come back and allow myself some HOPE.  The worst that can happen is I will be wrong but that could be years from now.  It makes today more bearable

 - There are people with worse side effects and worse diseases than me.  I think bc sucks and I hate everything about it - every reminder, every pain, all the hormone issues and pain that come along with it but I have to remind myself a diagnosis of a brain tumor (which happened to my brother in law right before I was diagnosed) or pancreatic cancer or even a heart attack or stroke and I would probably be dead right now.  There are people who are paralyzed, live in constant excrutiating pain, people who are blind, burned, etc.  It helps me keep it in perspective

 - I dont think we can put this behind us and move on and forget it.  Ever.  But I HOPE we can learn to live with this as part of our history and what makes us who we are.

 - As far as how to deal with others - I let them think its over and I beat it.  Why ruin their day too?  I am here and alive now and doing pretty darn well.  If this has taught me anything, is you just dont know what the future holds for us or for them.  None of them are gonna live forever either and I pray we all live a long life but for now I try to focus on today and the immediate future. 

I have a friend with a stage 3 diagnosis and 5 postive nodes who is in her 10th year, I have another friend Stage 3 with 4 positive nodes who is in her 5th year.  That gets me through some scary moments. 

 I want to live til I am 80 and I may but for now I make my plans about a year out at a time.  When my kids say something about "When I am in college...." I make a concious effort not to flinch and just smile and agree with whatever they are saying.  I pray I am here but if not they will be ok - why worry them now.

Im not saying I don't understand and dont feel the same way but ESPECIALLY if my time on earth is limitied - I want to be happy, I want my kids and hubs to be happy.  I have watched two family members die from stage 4 cancer in the past 5 years and the best moments and memories for me, as the survivor and caretaker, have been the moments that I watched them laugh and enjoy the day and really live.  I am sure they were both scared to death (of death) but they also taught me how to live.

Feel free to PM me.

I completely understand. 

Although I'm pretty good at not only putting on the happy face, but actually feeling pretty happy.  (keeping in mind of course that chemo starts May 8th)  My DH however has a really really hard time, anytime I say anthing negative. I came back from my post-op appointment and was surprised that I was at a stage IIIb & his first comment was that the stage doesn't mean anything & you'll be on herceptin -   I know he's scared but it's really hard knowing I can't ever have a moment to feel upset.

I also know there is a heck of a lot worse out there & I'd take this 50 times over than anything happening to a child - so it's all in perspective but once in a while it's nice to just be able to articulate the worry.

On a happier note I told him to hold on to his hat because I'm going to be complaining up a storm when I have to shave my head ! 

Kira, why do you have to "move on"? I hate that term! That's like ignoring all that has happened. You can still grow and live but you'll forge ahead when you're bloody well ready! We have to mourn, grieve and all the other stages of death before we can even begin to heal.

The emotional changes we experience are inevitable, but I do think we need to tell others what is realistic to expect" from BC news forward". I know I will never be the same. Change is natural. But when we get overwhelmed by too many changes, too quickly, I think that is where we all have the hardest time. 

Kira: The positive changes in your life " spiel": it is not helpful to anyone in grief or adjustment from my point of view. It places a burden on the person struggling to simply slam on mascara and get out the door without a major meltdown. I am trying to make a map of what in my life has changed without " my choice" and what I would like to change in my life " having choice". Getting out some markers and a big sheet of butcher paper. Going for broke and listing outlandish possibilities with realistic ones. Firing up the stereo, pouring a glass of something good, and seeing what results. My hope is that finding just one thing at a time I can "take charge of" and change gives me some power back." Loss of power" is rough for me. I feel like a deposed dictator......Give me something I can control!!!

Moogie 

I don't know if I'm going to be able to articulate this very well, but here goes. HA! First, I acknowledge that I haven't had as scary or life-changing an experience as so many others have, but I certainly have had my times of anxiety and fear and resentment and... I also get comments about how well I handled things, and thank goodness it's all over. Well, I DID think it was all over after my first bout of DCIS but here I am again with a new diagnosis, with all that implies.

Here's where I'm going to have trouble making sense, I think - I think it's only fair for our loved ones to really understand our journey. And the thoughtless or clueless can use some education. So I try to be open about what really is going on in my head. If someone says, "Gosh, you were so brave," I gently say, "Well, not always...." and then offer some insight for them. Just a quick statement, not a lecture. Then if they want to honestly talk more, we do. If not, we move on.

I don't want to wait till I'm all pissed off and take someone's head off. I want to keep my own sanity by being open and honest. And it's also true that I like to be acknowledged when I do manage to be strong. But I think it's OK for others to see that there is a price with all that.

And at bottom, I kind of want people to know what it's REALLY like in case, god forbid, it happens to them. So that if THEY feel they can't be brave and upbeat all the time, like I supposedly was, that's normal!

And honestly, I don't want to have to be responsible for keeping everyone else's spirits up ALL the time. Mostly, yes, I do want to keep IT from leaching into my home life. But there are days I need to be very real with my husband, and he just has to go there with me (and I must say, he does - he's been so great). And I need to be real with my sister, because our mom had BC, too (18-year survivor!), and my sister may be next. (Hell, ANYONE could be next; a friend of mine was dx with Stage 1 IDC a week after my last dx.) For her, I definitely want to demonstrate that you keep on going despite the fear. It's working for all of us thus far. I don't make it All About Cancer very often - but when a dose of reality from me is appropriate, I provide it.

Certainly those who say, "Thank god it's over" WANT it to be over, because they love us and they are frightened for us, and for our kids, spouses, parents, friends...and themselves. But they need to know. I'm not one to be comfortable breaking down in front of someone but I AM OK with opening up and sharing some of my internal journey. So I like to do that in bits and pieces along the way and not bottle it up. I believe that, for me, it's beneficial - and they can learn something, too. And if someone can't handle it that,honestly, is not my problem. I had to get tough; they can, too.

Bridget, that scores at the top of the outrageous scale.

Good for you to tell him why you cut your lovely hair....

Kira 

Holy cow, Bridget! I'm glad you went off on the guy. What a tool.

And just in general, why do so many people think they have any business commenting on ANYONE'S appearance? Strangers, yet? Rhetorical question, but these things just flabbergast me in general.

"I thought you died or something" is also ...amazing.

 Just sitting here shaking my head...

I know someone famous (George Barnard Shaw or Samuel Clements, someone) said "The rumors of my demised are greatly exaggerated."  I mean, what do you say?  How about, "sorry to say, still kicking."

In Lisa's blog she writes "Of course they're fake, my reals ones tried to kill me."

Having a heart attack and deciding you are going to take better care of yourself is positive change.  What are the positive changes that stem from having breast cancer?  There aren't any.  You survive it and go on - not the same, certainly not better (you don't have a part of your body).  Hopefully you do survive it.  Grieving is certainly involved - and grieving takes the time it takes and part of the grief never goes away.

Someone who had a leg amputated would not be told such silly things.  Why is a breast(s) any different?

I never did accept that "Be Happy" philosophy of if you think positive thoughts, positive things will happen to you.  It is stupid and it is definitely NOT true.  I know a ton of good people that have lots of bad things in their life and obnoxious people who seem relatively carefree.

I don't think anyone has said to be "it must be tough sometimes."  It would be most appreciated.

Hooray for barbe!

I love the article that Kira posted above. I'd read it before when she posted it earlier, but it does make so much sense and says it so clearly. Thanks again Kira! 

...and he said?....