#DontIgnoreStageIV #MetsMonday – Let’s Keep “Stomping”!

Do you ever wonder if what you do matters? Do you ever wonder if your voice is ever really heard? Who doesn’t, right? Sometimes I wonder about these things too. Sometimes I wonder if my little old blog makes any difference at all – I mean a real difference. Or am I mostly just preaching to the choir. After all, it’s mostly people impacted by cancer who read cancer blogs, who read my blog. Don’t get me wrong. I love and appreciate all of you, my dear readers; but for the most part, if you’re reading my blog, you probably pretty much agree with most of the stuff I say. You’re probably already very much aware of the needs of the metastatic breast cancer community. So does what I say or you say matter?

Yes. Advocacy of all kinds matters. I believe that. I have to believe that.

That’s what I remind myself when I grow weary and feel like all I do is repeat myself (especially during Breast Cancer Awareness Month). Each of us needs an advocacy niche and I don’t mean just in Cancer-land. Everyone needs something or someone to advocate for. For me one of these things is raising genuine awareness about the reality of metastatic breast cancer, the only kind that kills.

So every #MetsMonday (as well as others days, too, of course) I will keep “stomping”. I will keep advocating.

Because stomping matters. Advocacy matters. Making noise matters. Bringing attention to realities of metastatic disease matters. Putting real faces of real women and real men to the numbers matters. Sharing their stories matters. Remembering lives taken and lives presently struggling with metastatic disease matters. Reminding whoever is listening that real lives are at stake matters. Changing ingrained pink ribbon messaging matters, even if it’s a slow evolution. Informing listeners about the entire spectrum of breast cancer matters, even if it’s hard and makes some uncomfortable. Striving to generate more research dollars specific to metastatic disease matters.

It all matters.

Because the lives of our loved ones matter.

Every life impacted by breast cancer, regardless of stage, matters.

This is why I intend to keep stomping.

I hope you will too.

Let’s keep stomping together!

Together we can make more noise.

Need ideas for what you can do? Click here and here.

Do you ever wonder if you’re being heard?

Who or what do you advocate for?

What keeps you “stomping”?

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When sharing this post, please include the hashtags #dontignorestageiv and #metsmonday. Thank you.

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Image via Live From Stage IV. Click on the image to learn more about #projecthashtag.



12 thoughts to “#DontIgnoreStageIV #MetsMonday – Let’s Keep “Stomping”!”

  1. Nancy, feeling not heard defeats us so even if we get discouraged or feel shut down our silence is an indulgence in feeling sorry for ourselves. When others CAN”T speak for themselves our silence really isn’t about us, it’s about everyone.
    Since my cancer care pretty much sucked I’m angry about the treatment and thought I’d just go to my room and pout. Then I excused that by imagining how unproductive it would be to tell my oncologist she’s a jerk for leaving me to figure the system out by myself by abandoning me right at the start. And now I’m angry, unreasonable and pouting in the closet in my bedroom and oh so sorry for myself.
    But this is getting worse than the chemo so I’m now at least out of the closet and found a book through a friend that mentions how to write up the “complaint” I want to lodge in a way that drops the accusation but points out the failings I experienced. (I’ll be working on it to put in my blog soon as it’s about critiquing bad systems rather than human mistakes).
    The second silencer for me is since my treatments were at a branch clinic but the people who change policy is at the main clinic I need some way in there. The problem is all the contact points are locked behind no-nothing receptionists and an institution so fond of itself it could never accept its own errors. But I do know two people who are connected higher up and I’ll get some names to contact.
    Finally, I bought a couple of your books to bribe my way in:-) Who could resist an opportunity to become a better person offered in a clear and concise manner?
    I remember reading my kids a Dr Seuss book that had the line “Someday my troubles will have trouble with me.” Sometimes we have be a problem that can’t be shut down.
    Good blog Nancy!

    1. Scott, I’m sorry about all of your frustrations. I’m glad you found a book which might help you with your complaints regarding your care. Thank you for buying my book, though I don’t think it will be much help in the “bribe” department. Good luck with everything. Thank you for reading and commenting.

      1. Nancy, the frustrations and poor treatment compel me to respond, plus dealing with jerks kept my mind off feeling sick:-) Learned from my parents to never quietly put up with anything and I see it as an obligation to assess my treatment and report on it. The removal of emotion from the conversation in healthcare is disrespectful and bad practice. But to be fair, the organizational structure of the cancer institute encourages a separation of services (silos) that are designed to allow each department to focus on their own specialty. This structure is supposed to make things better and more efficient but instead it leaves the patient lost in the metaphorical hallway between departments and services.

        Don’t underestimate the power of your book. It tells the world we need to care for ourselves and others. I’ll present it in person to my oncologist to see her reaction and then get back to you. Sometimes in the hurry of providing care people will assume what they do is seen as helpful when it isn’t perceived that way by the patient. Anyway, I see it more as a peace offering and a reminder to remember the patient is a person.

        1. Scott, I agree that the removal of emotion from the conversation in healthcare is problematic. Mental/emotional health is so important in all of this too. Specialists are wonderful, but you’re right, sometimes patients do end up feeling lost in the shuffle. Keep speaking up. Thanks for the additional comments.

  2. Hi Nancy, just wanted to tell you how much I appreciate what you are doing. I have stage 2b breast cancer, but I still appreciate learning and understanding the full scope of this disease and what I could be facing down the road. Your blog and others that I read about metastic breast cancer have really educated me and it is information that I share with others who ask me if I’m “cured” now that I have finished treatment. There is so much education that still needs to happen around breast cancer. Thank you for being part of it.

  3. Nancy,

    I agree that advocacy is an important thing, and I admire your tenacity in addressing metastatic breast cancer, yes, the kind that kills. I think the stomping out that occurs on #MetsMonday is effective. It helps to let people’s collective voices be heard. I participated in one a few weeks ago, but this Monday escaped me. Metastatic breast cancer affects all of us. Thank you for all you are doing; bit by bit people will take notice.

    1. Beth, Everyone needs something or someone to advocate for and as I said in the post, not just in Cancer-land. I like the stomp out BC #MetsMonday campaign that seems to be picking up momentum because I believe so strongly in the power of collective voices. I believe in the power of one voice. Thank you for reading and for all your support, Beth. It means a lot.

  4. Everyone has their own calling i bet yours is this. Good thing is now i know and i will use your blog as a crusade for this exercise. Be blessed

  5. Nancy your work is being heard and appreciated.Even that one soul you saved by just reading your post.Keep it up.

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