Tired of "Hope" and "Cure"

Posted originally on the Young Survival Coalition Metastatic Disease forum 16 July 2014 - 08:54 PM

 

I hate being in the breast cancer club, but generally speaking, I like breast cancer sites. I like reading news on research, I like connecting with others who might be going through the same thing.

I know I'm a tiny part of the population (10%) that was diagnosed as metastatic as the initial diagnosis, and that only 30% of the rest of the breast cancer patients go on to be metastatic, and even adding up those two it's still less than half...

I'm tired of seeing so little about metastatic disease. I've ranted about this before elsewhere, but it bothers me. There's no cure for stage IV. The hope we have is hoping to live long enough to get a few more milestones under our belt, which is pretty much an "also ran" quality of prize as far as prizes go. So many websites focus on "cure", and "survivor stories" and I admit to being frustrated and annoyed with women who tell their stories as if getting a stage I or II diagnosis was the Worst Thing Ever. I know I should be ashamed of myself since for them, I'm sure it was, and it's not like they might not become one of the 30% but... it's still frustrating.

So much goes into early awareness, how about awareness for Stage IV? Breast cancer isn't what kills you, it's metastatic breast cancer. If all the cutesy slogans claim to be about saving lives, why isn't there more talk about mets?

I have ALWAYS had a personal issue with being ignored. It pisses me off like little else can. And I'm feeling ignored and the worst part of it is, it's not just me being ignored, It's the 40,000 of us - women and men both - who die each year in the US from metastatic breast cancer. Early Detection awareness doesn't do anything anymore. Everybody's aware of it. Such a paltry amount of the fundraising results go to mets research. Don't we deserve at least 30% I can make a case for 40%. In reality, we get Two Fucking Percent. Two.

I don't have much a point to this post. I'm angry and frustrated and ranting and feeling ignored, and it's making me feel spiteful and bitter toward those with earlier stage cancers. I want to scream "Don't tell me you have it hard! You don't know hard until you're stage IV!" which isn't fair, and I know this.

But at the same time, I'm handling my diagnosis far better than a lot of my mets sisters, and most of those got the kick in the gut with their diagnosis being a recurrence after they thought they beat that cancer bitch. I can't say I'd be handling this nearly as well if I were in their shoes. But I am handling it well. I'm the one who's consoling everybody, I'm the one who was fighting to keep everyone's spirits up, to keep them from getting too depressed or worried. I'm the one who was making the jokes and keeping things light and breezy and easy, I'm the one. And I'm the one who has to face that I might or might not have a few more years here and I have to give up my career goals and so much because of cancer.

If I'm handling it this well, and I'm getting frustrated by the lack of a voice, lack of awareness and acknowledgement of stage IV, frustrated by "I have Stage II breast cancer and it's so terrifying!" I wonder how other women with mets who've got it worse off than I do feel.

I'm sorry if I offended anyone and I do know it's not right for me to judge the circumstances of others, but it's just how I feel sometimes.

Treatments and cures are built on our backs, with our blood and tears. Is a little fucking awareness on breast cancer sites acknowledging the Stage IV people too much to ask?