Tired of hearing about "Survivors"

I'm new to Stage IV.  Found out my plan on Monday and had my first loading dose of Faslodex.

Have lost some very good and dear ladies to BC, I know how Stage IV goes.  By saying what I am about to say does not mean that I ready to sit down and just give up - that isn't my nature.

However, on Monday the oncologist proceeded to talk to me about this now being considered a chronic disease like diabetes or heart disease.  That we were going to try Faslodex first and we didn't know if or how long it would work but we had plenty of other drugs.  I KNEW all of that - what I needed to hear and have gotten here from you ladies is that this just sucks eggs. 

I had no symptoms from the multiple lesions in multiple bones -  my life was good.  Now with my loading dose of Faslodex, I got a headache before I got home, was lightheaded, been nauseated and ache as if I have been hit with a Mack truck.  So I really am already sick of being told I am strong, they have so many drugs for it now, you are so lucky this happened years later, that I am going to be ok.  No I'm NOT.

What is normal about dealing with these drugs or having progression, regression.  Yes, I am older and my heart aches for all of you that are younger and have young children.  I am 66, I was 60 at diagnosis.  I have two young beautiful granddaughters that I wanted to dance with them at their weddings; wanted to be there to see them grow into beautiful young women.  So even though I am old, I still had dreams too.  Does because I am older mean that I should be thankful for the years I have had (as has been suggested to me by ignorant acquaintances) and not want more?  I was very active. 

So I don't feel fortunate I'm living in the day of great advances, I don't feel like I am living with a chronic disease; I feel as though I am dealing with breast cancer mets..  I'm angry - I'm not ok, I'm sure not a survivor and I am someone that has a chronic disease in medical terms only - I'm dealing as others have said with something that I will die from or complications of the disease such as liver failure or pneumonia. So how do you feel good about having a "chronic disease" called metastatic cancer. 

I am not strong- I am devastated, I'm angry, I'm sad, I'm trying to find my footing.  I don't like this new norm that is my life.  Just as I did when I was diagnosed with BC - I want my life back. 

Today is not a good day - I know it will get easier for me to accept - it just isn't today.  

I hear ya! I don't much feel like a survivor when trying to navigate the fear, angst and provide a loving home for my husband abd children.

I also get annoyed when people tell me that I am inspirational! I don't feel inspirational, I feel ripped off.

Frapp, I love your attitude and the result that  you influenced.

Maybe I'm just jaded, but my gut feeling is that at the end of every promotional event is money. Money for pink trinkets, money for donations, money for contributions- money, money, money. Somehow, people are profiting. Marketing people are very well aware that the major consumers in this country are women. What more perfect incentive to spend than to buy a cute little pink something or contribute toward a disease that most women don't really believe they will ever suffer from, but somehow feel that much more protected because they "gave to the cause". Magical thinking.

As for the Survivors, I think that we Stage 4 Sisters know the power of denial. Celebrate, and it's all good, nothing bad will happen! Cheer, and you are a winner! 10 years ago when I was diagnosed Stage 2 and completed chemo, like so many other women (and men) dealing with the rigors of aggressive chemotherapy, I claimed a new "birthday"- the day I finished treatment and became A SURVIVOR! 7 years later, I can't even remember what that date was.

For me, these boards are the only place I show all of my true feelings. Maybe thats why people say Oh shes such a survivor or shes such a fighter. I do the things I do to stay well because what other option do I have? As long as the meds are working why would I NOT try? It sure doesnt put me into a survivor-ship mode, I do it cause I want to be around a while longer. It doesnt make me anymore inclined to jump around and say Look at me! Ive survived bc for 5 years!

Pink cheerleaders- LOVE IT!

Well we can forward this thread to the ones insisting we are survivors. They may be persuaded that there is no such thing as surviving, but only NED in the best case scenario, when see the number of the so-called survivor angels right on these pages!

Ebru 

I am so with you. I'm fighting just to have a couple more years to watch kids being married and see my first grand baby. I'm not thriving, I'm continually sick from the clinical trial I am on.

I wish I could be that young woman a few years ago who had stage III with a local recurrence and "beat it". I had so much hope then. But with the stage IV dx came the realization that I am not a survivor. Where do we fit in?

I don´t want to be a survivor (I confess I am not stage 4 but stage 3) I want to be a LIVE-R ........I hate all these euphemisms and I hate the way breast cancer has hi-jacked the colour pink......BC is not a pretty feminine disease, its ugly and brutal and dis-figuring

I will not use the survivor term. I am living with cancer and trying to not have it define my life.

I agree with Jill.  The only control I have is how I live my life which I try to do with gratitude, appreciation, joy, giving....  

Therefore I take Caryn's approach, saying less rather than more.  Not worth my effort and frustration to try to educate others (except for family).

Hi netty46, actually no. I have to fix that. I was dx 2002 stage III, local recurrence 2007, and dx stage IV 2010 with mets to axc lymph notes on opposite of cancer side. I also had a skin sparing mastectomy and the cancer showed up in pea size dots on my skin. We had no idea it was in my skin.

Michelle

Surviving, I can do SURVIVING.



I was feeling ripped off (again) as I dont feel like I'm a survivor now that I have mets.



Thank you Lori, here's to surviving

blondiex46 you certainly DID NOT offend me. I feel just like you about pink anything and cringe at being called a survivor when someone asked how far out I am. When I tell them depending on where someone places the starting point, I am 5 1/2 to 6 yrs. and I don't feel like a survivor. They have this shocked look on their face......well, have you walked in these chemo shoes?? Or had a loved one at high risk?? Guess not or they wouldn't be surprised at my statement. Thanks for sharing a common feeling with all of us. I chalk it up to this being someone who doesn't understand how many different Breast Cancers there are.

RonnieKay......you are correct. Sometimes when someone comes along and posts it seems to reactivate for a while. Sorry to hear Blonde has passed away. I have several boards as favorites & use to see her post on several of them. Although I am not real active like a lot of women, I do periodically go through to see what is going on.

Sad how we all must think about not "dragging our loved ones through". That is the hardest part for me.

JudyKRN......thank you for sharing your feelings & thoughts. They hit so close to home, although not diagnosed yet I do have some symptoms that are unusual & unexplainable. After going to my GYN, she could hardly wait to end the appt. & acted as though the "hounds of hell" were chasing her. So, I am very suspicious. And, like many women, mothers & wives, my family comes before me. Couldn't go to another doctor for many reasons......getting ready for probably our last vacation with our only grandchild, Oh gee, so busy with end of school activities, Oh can't be handed bad news now b/c DD and grandchild on going on a much deserved cruise. Now DH is scheduled for surgery this coming Monday. I put this whole BC journey in God's hands after going through chemo & Herceptin, the surgeries & the hormonal therapies, I felt I had done everything asked of me & more too.

You are a very strong woman whether you feel it or not and need to let others express that to you. A lot of us will not survive or some longer than others but I agree with what your doctor said about the car accident. Be thankful yours is more honest & doesn't try to candy coat the situation. And bless your surgeon that she was so doggedly watching over you. My BS gave me a simple MX both times knowing I planned reconstruction at some point. That is why I don't feel like a survivor but more like a warrior that is growing weary.