Tired of hearing about "Survivors"

OK, Sassa, is the wonderful saleslady a "survivor". Of murder, I mean.

So.... since we all have to deal with cancer I vote we call ourselves "dealers".

Leah

I love your cancer ninja so cute shi tzu.

I never called myself a survivor -  not in 1991 with the first merry go round and not in 2008 when Mets came into my life. I will tell you what I am - I am a Veteran - I have been there and had the experience. I continue to expand my experience.  I am a veteran of my treatments - just like a veteran in any business.  I hate the Pinktober prancing around (only 25% goes to research and less than 2% of that to Mets, in fact, most of the 2% is toward prevention of Mets)  I am disgusted by Nancy Brinker and her $500,000 salary and her freedom medal.  I have been on TV explaining the difference to our pink-blinded populace. I inform everyone I meet anywhere I meet them. I AM OUT OF THE PINK CLOSET!   And some of them just say  - "I hope you have some better times so you can do what you want while you have time" I appreciate those words. 

I loathe smiling as others say - "But you look OK - apart from your back hurting you -  and your fatigue and pain and fear you say you have from time to time. No one could tell  -  really you are amazing! If it was anyone else but you, I would be worried"  AAARGH!!.  LindaBB

Heidihill, in Russian roulette only one chamber (out of 6) has a bullet. I wish I had that much of a chance.

Leah

This topic spans all stages...early stagers...don't apologize for posting. 

I like 'Lifer' - treating for life.  I really don't know what to call myself - being an early stager that was cancer free, then having the luck to get the mets stable and now having some weird-ass mutant malignacy setting up shop in the abdominal lining...WTF - chemo.  Oh joy. 

And English, you really hit on something - people really don't know and then they well-meaningly make that statement about getting a second opinion since nothing seems to be happening.  Well, golly geez, I would have never thought about that.  And like we just let the oncs and nurses do whatever they want to us and why are we taking this and that and boy, that doesn't seem right and the best one 'did you tell you treatment team about it?'.  Nah, why would they want to know what is going on with me?  My goodness, all you non-breast cancer folks have all the answers to every ache and pain - perhaps I should be getting my second opinions from my nail girl since her mother's neighbor's niece has bc and is doing just fine.

Sorry, cynical much?  On this topic...oh yes, very much.

And it is true that a stage iv is not made to feel very welcome in the support groups - probably why we are so protective of our very much accepted place here.  We scare people because of what has happened to us and we don't offer what looks like a happy ending yet many of us live with stage iv for years and years.  Sadly, we are also the ones who will die of breast cancer. 

More than awareness, which we do need - I think education of what stage iv breast cancer really is could help more than anything.  It doesn't always happen and perhaps that would take some of the fear away for early stagers.  And once educated, be more aware of our bodies - bc mets caught earlier can change the outcome - keeping it in the bones gives longer survival; hitting it hard and fast once it does move can extend life; and early detection and early treatment works the same for stage iv as it does for early stagers - time to shift the education and awareness of the other side of this disease.

Hugs to all

LowRider

@ Leah:  I guess it would best be described as a "teachable moment."

That's what I am - a BC educator.

I swore I wouldn't post here again but here I am...I endured a rare and deadly disease called Cushings disease and it was terrible. Tons of tests, travel all over the country for specialists.eventually pitituitary surgery and removal if my adrenal glands. Not once did I have to wear a ribbon or shirt and I wasn't called brave, I was called unlucky.

Then I got BC and I'm supposed to march in parades, be merchandised and my health is no longer my private business. Maybe that is what bothers me. Why do we need to be labled or put into categories at all? I am impressed with all of you. This is almost unspeakably hard at every stage.

This will be my first pink-tober since being diagnosed and I'm dreading it. Everyone says, "You've just powered through. You never looked sick. You're an inspiration." While I know their words are well intentioned, they are annoying. I hate that the whole rest of my life I will worry about recurrence and not being here for my five young children. That's not really surviving IMO. Post treatment is definitely taking a toll on me mentally

perky, excellent post, and cool breeze, yours too.

Prior to bc, I wore pink.  My avatar photo is of me prior to bc in one of my fav shirts which happens to be pink.  

Now I hesitate to wear it.  I don't want people thinking I'm all about some kind of bc awareness.

I was going thru chemo in the spring when I was asked by several people to participate in 'relay for life' walks.  It was the last thing I wanted to do.  I couldn't believe anyone would think I wanted to be some ra-ra cheerleader after finding out I had bc.   

Funny, my daughters Dr. told her she picked the short straw. I don't recall anyone asking her to pick a straw

I hope you don't mind me posting, but like Heidi this thread caught my eye.  I'm not stage IV, but have still been offended by the term 'survivor'.  Really??  How does anyone know if I've 'survived' or not??  Do they have a crystal ball??  Seriously, don't people get it that it may or may not mestastasize??  One day, just a couple of weeks ago, a lady told me to 'keep a positive attitude and everything will be fine.'  Maybe I shouldn't have, but it was just bad timing for her.  I told her that by nature I've been blessed with a good attitude, always have and always will enjoy life.  I then asked why people don't walk up to 'heart attack patients' and tell them to have a good attitude.  She looked horrified, but I stood my ground.  She wasn't trying to be smart or anything, she apologied, as I did also...but you know what??  It felt good to finally say that!  Thank you ladies for allowing my post.  ((hugs))

Hi Tammy (tsundermann).  I just thought I would jump in and say that many, many women have reacted the way that you have. It is perfectly normal.  I also had young children at my time of diagnosis, my twins were four.  After chemo it hit me out of the blue and it took me a while to adjust.  In the end I wrote a poem about my fears and that helped a lot.

I understand what Coolbreeze is saying but we are all different and not all of us are able to make that choice immediately. However I am seven years out from an early stage cancer and the worry whilst still in the background, is greatly diminished.  Things do get better with time and I found that after two years I was really moving on.  The reason I am still on this board is due to friends I have made and care about.

Best wishes to you.

By the way I don't use the term survivor.  I just don't use anything really.  However I hate the fact that breast cancer is pretty and pink. And I detest people's ignorance about Stage Four.  I educate people whenenver I can and I only donate to research. 

Sandy

I never realized the funds from Komen go primarily to awareness and not research.  What organizations focus their funds on research primarily? 

Thanks for this thread.  I like the term 'veteran' that someone mentioned before.  I have been thinking about that.  I also dislike it when people call treatment a 'journey' - hello, not my idea of a journey.

I am an early stager, but feel I have lived with cancer most of my life.  When I was 10, my mother was diagnosed with breast cancer.  This was in the 60's, so there were no mammograms, it didn't get diagnosed until she felt a lump.  By the time she was diagnosed, it had already metastisized to her liver and her bones.  It was in just one breast.  They did not do reconstruction in those days either and the surgeon did not seem to care how she looked.  Her scars were hideous. Her skin was tucked up under her arm and bunched up where her breast had been.  In the 5 years it took the cancer to kill her, her ovaries had been removed, she would roll over in bed and a rib would break.  She went through multiple rounds of radiation, so her skin was burned too. She would wake up at night and scream from her pain.  My father told us he had to fight with her to take the kitchen knife from her hands so she wouldn't kill herself.  As a young child, I had her scars burned into my memory.  In the last year of my mother's life, my older sister who was 22 at the time, was diagnosed with leukemia.  I saw her whither away to nothing, go thru chemo, which in those days was at such high does that she was violently ill, hair grew on her face and then she when bald.  My mother died when I was 15 and she was 48.  My sister died almost 1 year later at the age of 24.  My father died of a heart attack about 6 years later at the age of 51. The Dr. said he died of a broken heart. I think that made him a casualty of my mother's cancer. I started getting mamograms at the age of 30. I never had a normal one, so each year, I would go through that dreaded test and follow up waiting to hear whether or not it was my turn. In 1990, another sister was diagnosed with breast cancer. She was 47. She opted for a BMX. She has now gone 20 years without a reaccurance. After she was diagnosed, my Dr. stepped up my screening. I was diagnosed with fibrocystic breast disease and had very dense and lump breasts. In 2003, I had 3 small lumps biopsied in my left breast. They turned out to be benign calcifications.  I started getting mammograms every 6 months and was labeled as high risk. I guess this helped in getting the insurance to pay for more frequent screening. In 2006, I had a discharge from my left nipple and the found a lump during a breast MRI. This was biopsied and turned out benign. At that time, the Dr. put me on Tamoxofin, but I was taken off of it as I developed abnormal uterine tissue that had to be biopsied. I did genetic testing and tested negative for the BRCA1 & 2 genes, however, since in addition to my mother and sister, I had 2 aunts who died of BC and 1 who died of ovarian cancer and 5 cousins with BC, they felt that the instance of BC in our family was so significant that they wouldn't rule out other unidentified genetic mutations. My Dr. thought I should consider Bilateral prophylatic mastectomy. I didn't do it, just opted for more frequent screening. I was diagnosed with Stage 1 ILC on May 17, 2011.  After much research and discussion with my Drs. I, decided to go with the BMX with TE's.  Biopsy of the non-cancer breast showed pre-cancer, so I was very glad that I made that choice.

What I know is that breast cancer is a horrible disease that me and my family have lived with most of our lives. I also know that my cancer is not my mother's cancer. If this is because of the many women who have lived with this over the years or because of research enabled by cancer walks, etc, I am eternally grateful for this. Even though I have always lived with the fear in the back of my mind most of my adult life, I decided not to let it make me a victim. I have lived my life to the fullest and I will continue to do so for as long as I can. I have 2 young daughers who will not inherit my genes because I adopted them. I want to be here for them for as long as I can.

Phyllis