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National MBC Awareness Day – One Day Is Not Enough

October 13th is National Metastatic Breast Cancer Awareness Day.

I’m passionate about raising awareness about metastatic breast cancer. For me it’s very personal.

I lost my mother to metastatic breast cancer in 2008. I lost my friend Rachel earlier this year. I’ve lost others I care about as well. Sadly, I’m not alone. Many of you have lost loved ones to metastatic disease as well and perhaps you are even stage IV yourself.

Every time I hear about another stage IV breast cancer diagnosis or that someone’s cancer has metastasized, it feels personal all over again because to me it is.

One reason I hesitate to publish posts on metastatic breast cancer is because I am not living with it myself, so of course I don‘t really know what living with it is like.

While it’s true I’m not presently living with mets, I also realize this could change at any given moment. I know my family gets nervous when I talk about such things, but this is reality. This possibility is generally pushed to the back of my mind. I don’t dwell on it, but I do think about it from time to time.

Of course, I do know a lot about metastatic breast cancer from a daughter’s point of view and from a friend’s point of view, but I know this is nothing like living with a stage IV diagnosis yourself.

So sometimes I do ask myself if I really have a right to speak out or write about it.

Is it my place?

As I’ve mentioned before, another reason for the hesitancy many feel about speaking out about metastatic breast cancer is fear.

Part of this fear involves fear of offending those living with metastatic disease. No one wants to step on toes or unintentionally dampen anyone’s hope.

Part of this fear many feel also comes from the old “If we don’t talk about it, maybe it’ll just go away, or at least we don’t have to deal with it,” mentality which of course, in the long run helps no one.

And many people prefer to hear or talk about only the ‘pinktified’ stories; you know, the brave-warrior-happy-ending kind.

Those are easier to hear. I get that.

Despite the uncomfortableness many feel regarding the open discussion of metastatic disease, I’ve come to realize along with so many others, we desperately need to discuss metastatic breast cancer.

In fact we must talk about it.

We can and should speak out from whatever vantage point we’re coming from.

Bringing metastatic breast cancer out of the closet should be a primary goal of Breast Cancer Awareness Month.

It hasn’t been in the past.

This is changing, though admittedly it’s changing too slowly. We need to speed things up.

This is why I choose to speak about metastatic breast cancer, and not just on one day or in one month. This is why so many others do as well. Every voice matters.

It’s why I will continue to advocate for breast cancer awareness that includes awareness of metastatic breast cancer.

I will remind others whenever I can that yes; there are things to celebrate during October.

However, there are also many reasons to not feel quite so celebratory; the main one being the fact that despite the “pretty in pink picture” pink ribbon culture continues to paint, there are still 40,000 deaths from metastatic breast cancer in the United Sates alone and close to 500,000 globally.

And yes, we need to care that this is a global issue.

It continues to greatly distress me whenever I hear someone living with metastatic disease say they feel lonely, isolated, depressed, left in the shadowy fringes of Pinktober, or worse completely erased.

I’m saddened when those in greatest need of support feel so unsupported and unheard.

I’m angered when I hear about the minuscule amount of dollars being allocated for metastatic research, though change is finally in the wind here.

I’m frustrated when one measly day in October is set aside as Metastatic Breast Cancer Awareness Day.

We need to move beyond merely turning all things pink and slapping on pink ribbons.

We need to move beyond awareness.

Breast Cancer Awareness Month should focus on the entire spectrum of this disease, including metastatic breast cancer.

And one day in October is not enough.

Not even close

Note:  Visit my mets page for more information about metastatic breast cancer.

Always remembering my  mom, Rachel and all the others known and unknown to me as well.

What is something you want people to know about mbc?

If you are living with mbc, do you ever feel isolated, alone or “written off”?

Who are you remembering?

 

4 thoughts on “National MBC Awareness Day – One Day Is Not Enough

  1. Tomorrow October 13th is my birthday. I have asked those who care instead of a gift to please donate the proceeds of what they would have spent for something I really don’t need as much as I appreciate the gesture to METAVIVORS

    I have lost several friends to this dreaded complication of Breast Cancer. I am afraid of it and that fear keeps me telling everyone and anyone who listens to not buy into all the trappings of pink. To get a better understanding how METS rips families apart when by now it shouldn’t. It should be chronic not terminal.. I don’t want to keep reading posts of yet another woman blogging friend no longer here. We have lost far too many this year we can’t afford to keep losing more because of the inadequacies of donations being distributed to research to find not a cure because – not being a skeptic I doubt one in my lifetime will be found. To keep those with Stage 4 alive happy mothering children, being wives lovers friends. Without that constant fear hanging over our heads. Wondering if this is the time!! We Just Want To Live!! Is that too much to ask for in this day and age of new scientific developments , if they can find new planets out there in the dark hole in space.. why should this be so bloody hard??

    Love Alli ….XX

    1. Alli, You are very generous to suggest that others give to METAvivors instead of getting you a gift. This certainly speaks volumes about where your heart is at. The losses are staggering aren’t they? Keep asking the tough questions. We all need to do that. Thanks so much for commenting and I hope you have lovely birthday.

  2. I’ve been remembering my mother. It’s weird, she died, of course, from mets, but back then no one was talking about it so I have to force myself to remember that’s what it was and not simply “breast cancer.” There was so much more involved. And you know, I find myself these days shying away from the subject. I don’t want to write about my little worries in fear of offending someone living with mets. Funny, that never stopped me before. Anyway, you’re very right. The subject of mets needs to be brought to the forefront of any breast cancer conversation. Things need to change and it’s so important we help with that. You are doing an amazing job. Thanks for that.

    1. Stacey, It’s interesting how the “words” of breast cancer have changed isn’t it? Thank goodness we talk more openly about most aspects now. Talking about mets is still hard though. I completely understand when you say you shy away from the topic. You’re certainly not alone in that. Change is happening, but slowly. Thanks for being part of it and I’m sorry you lost your mom to this awful disease too. Thanks for commenting.

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