As another New Year gets underway, I’ve been reading a lot about resolutions and goals; I’m sure you have been too. You might even be growing tired of reading about such things. I hope not, though, as I’ve got a post coming on this too…
One thing I plan to keep on doing this year is advocating for increased awareness and understanding about metastatic breast cancer, including the need for further research.
I’m driven. How could I not be?
I started blogging over two years ago now primarily to share about my own breast cancer experience, as well as the topic of loss and grief, among other things. Blogging is about sharing. We bloggers tend to bear our souls. This is part of the reason why the bonds between bloggers and readers grow to be so strong, at least in the breast cancer blogosphere. This is also part of the reason why every new mets diagnosis and every loss matters to all of us. In a very real sense, we are all in this together.
Somewhere along the way in this blogging gig, I turned into an advocate of sorts. This wasn’t in my original plan. Now I realize it was really part of the plan all along, I just didn’t know it at the start.
My friend Rachel of The Cancer Culture Chronicles helped bring out my inner advocate. In fact, she pointed out this very thing to me herself. One of the many things she taught me was to push myself, to step out of my writing comfort zone. Rachel’s advocacy sparked mine. I continue to learn from her voice even now.
And then, of course, there is my mother’s experience with metastatic breast cancer. Since it was her experience, it was also mine, partly so anyway. I remember everything about that time. How could I not?
We’ve made some pretty substantial progress of late in bringing metastatic breast cancer out of the shadows thanks to the work of many. Check out my Mets page for some great mets resources and also for a list of blogs written by individuals living with mets. If you are living with mets, writing a blog and would like to be added to this list, let me know.
This brings me back to Mets Monday and why it matters, to me anyway.
Part of being a #fearlessfriend is also being a #fearlessadvocate. (These are Twitter #BCSM hashtags. Here’s a link to learn about #BCSM).
I want Mets Monday to be another safe haven for anyone, with or without mets, to share, learn, vent, rant, cry, advocate or just lurk. I know it’s a small “campaign.” But I will use whatever platform I have because I believe it all matters. I have to. And just like every voice matters, every little step matters too, and you never know where even little steps might lead.
This is why I will also continue to use my blogs, here and on Huffington Post, as vehicles through which to speak out about metastatic breast cancer whenever I can. I will encourage others to do the same. I will use social media to spread the word whenever I see fit. I will keep speaking with those who will listen. I will just continue.
How can I not?
So join me on Mets Monday, or any day, because it’s not really about just one day of the week. Share on my page or on yours if you have one. If you are living with mets or not, share something mets related on Mets Monday. Share a post from one of the many wonderful bloggers living with and writing about mets. Or share your story, concerns, frustrations or fears. Ask questions. Answer questions. Share your voice. Share your passion.
Share your “spark.”
We have to keep this “fire” going.
Are you living with metastatic breast cancer or do you know someone who is?
Who or what sparked your advocacy?
Do you have a post you have written (or that someone else has written) that you would like to share? If so, please feel free to share the link.
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AnneMarie @chemobrainfog
I love you for this, Nancy. It seems like there has been a wave of “progression” in a number of people that have been behind my advocacy. I’m frightened for each and every one of them.
My attention has been diverted over these past bunch of weeks because of my mom… but, I can quickly rattle off the names of no less than five people who’ve been having a really rough time. I won’t, because I don’t want to forget anyone….. But it seems the scans all began to come in with not so great news.
I’m beside you, my friend…. pushing and trying to keep it real. It’s a disease. It’s deadly. And we’ve done little at all to help change their outcomes. Mets Monday….
xoxox
Nancy
Ann Marie, I know your attention has been diverted of late and my heart goes out to you and your family. Too many families continue to be affected by mbc. I wish we could make bigger strides more quickly, but… thanks for being beside me. You are always willing to stand beside so many and we’re all grateful for that big heart of yours! Thanks for the comment.
Scorchy Barrington
According to my mother, I was born standing on a soapbox! It makes sense, then, that I want to share my story and advocate in my small way for patients and what it is like to live with metastatic breast cancer. I did not plan that; I thought 20 people would read my blog. But when I saw how many people read the blog– from all over the world!– I realized I had a responsibility to blog for a purpose bigger than just my one story.
I tell just one story, but I am but one part of an enormous mosaic of patients, physicians, and other healthcare professionals that makes a tremendous difference. I am not so keen on having breast cancer in my bones or lungs. But having the opportunity to be part of a global community that can change things for the better is a real privilege. I hope I can use that wisely.
Nancy
Scorchy, Yes, being an advocate for mbc certainly is never part of the plan is it? While I hate that you are dealing with a mets diagnosis, I am grateful you are sharing your story. Believe me, it matters. A lot. Thanks for sharing here and on your blog.
Susan Zager
Nancy I think it is so good that you are doing this #fearlessfriend and #fearlessadvocate. Mets Monday makes so much sense. Too many people around me have a mets diagnosis and there has to be a change in the 30% rate of patients that get MBC and the death rates. One woman dies every 14 minutes in the Unites States alone of MBC. We haven’t had much progress in the death rates for the past 20 years. We just have to keep keepin what we are doing to get the message out. Thank you! Hugs and XoXoXo – Susan
Nancy
Susan, Thanks for making those important points. We have to keep making them over and over don’t we? We will not forget. I appreciate your comments, Susan. Thank you.
Barb Bristow
Nancy, Thank you and all our other #fearlessfriends for all your advocating and support! My story is still so new that I haven’t had the guts to write it down. But today… I work in Human Resources and today I was updating an employee’s 401K deduction. It hit me like a ton of bricks that chances are I won’t be around to enjoy retirement with my husband. This has got to stop! As Susan said, “we just have to keep doing what we are doing to get the message out” Thanks Nancy!
Nancy
Barb, You are coping pretty darn well I’d say. I’m so sorry about your recent mets diagnosis. Every new diagnosis does feel personal to me some how. I don’t mean this in a patronizing way at all. I sincerely mean it. I’m sorry you felt like you were hit by a ton of bricks, completely understandable. You’re right, we just have to keep on keepin’ on don’t we? Thanks for all your support. My best to you, Barb.
Theresa Palomares
Hello,
First off, thank you for all that you are doing, I will be brief as my back is killing me and I must lay down for awhile….I have been cutting squares for one of my facebook group’s advocacy quilt and I have a new project that I just started called the “METS” collage, follow the link above but I will have to say that you are absolutely correct in getting out of that “comfort zone” and I would have to say that the Metavivor’s President, CJ, is my mentor; she showed me how easy it was to step into something to make a difference, one person, making a difference but we have to be willing to try! You will never know what you can accomplish unless you try and with the Quilt project, I have never sewn a day in my life (well, maybe a button-no, I had a press on button machine) so it’s coming along nicely, at this point we just need more participation and sadly, folks in our group have many SE’s that are holding them back so this is why I created the “Pink Pins Project”, this way a person can feel valuable enough to contribute and help with an advocacy piece-no sewing required!!!!! Have a great Monday!
Nancy
Theresa, I’m sorry about your back pain. It’s wonderful how you have created this marvelous project. I completely agree with you about CJ, she’s a marvel for sure. And just for the record, I’ve never sewed either – other than the occasional button! Thanks so much for reading, commenting and sharing your “spark.”
Theresa Palomares
Sorry, here is the link to the Pink Pins Project
http://www.facebook.com/IMBCAPPP
Nancy
Theresa, Thanks for sharing your link! Hope to hear from you again. My best.
Jada
Nancy,
Thank you for getting the word out, we stage IV patients need treatments and a lot of support fast! I was diagnosed with stage IV breast cancer last October after 2 local recurrences and a lot of failed treatments, I’m starting a clinical trial next week at MD Anderson, I don’t have much talent in the writing department but love reading all the great blogs listed above and all the support and friends that I’ve found thru #BCSM, it makes me feel less lonely, the instant bond between us with breast cancer is a beatiful and the support we can give each other is invaluable, I hope our voices are heard soon and as a consequence we’ll have access to much needed/succesful/life saving medical treatments for each one of us xoxo
Nancy
Jada, I’m sorry about your recent stage IV diagnosis. You definitely have a lot of support out here and I’m so glad you feel slightly less lonely. Social media is pretty great isn’t it? And the support is genuine. Good luck with your clinical trial. Please keep me posted on things go. Thanks for adding to this conversation, Jada.
Kate
Thanks, Nancy, for your support. I was diagnosed at Stage IV in October 2011 and began blogging a few months later after getting back on my feet. My Kate Has Cancer blog is at http://katebreastcancer.blogspot.ca/. It has been a great way to keep friends and family aware of my progress, but I hope it helps other Stage IV women find their strength.
Wednesday I will get my CT results and likely restart chemo Friday after a short break. Fingers crossed with me?
Kate
Nancy
Kate, I will check out your blog soon. Blogging is a nice way to keep others informed, but even more importantly to offer support, as you are certainly doing for others living with a stage IV diagnosis. Thank you for that. And thanks so much for sharing here. Your spark matters. Good luck with the CT and upcoming chemo regime. My fingers are definitely crossed! Keep us posted.
Chris Jones
Hi Nancy.
I have to reiterate Susan Zager’s comments. I lost my wife due to MBC sixteen years ago and still miss her each and every day. The Internet was then in its infancy and although there were some local ‘networks’ there was no way of sharing information and experiences globally.
Thanks to advances in technology we can now converse with ‘like minded’ people all over the world. You Nancy, are doing a wonderful thing by being a #fearlessfriend and #fearlessadvocate to all those who care to join in by blogging, tweeting, or just commenting and sharing information.
Thanks to #MBCAWARE, #BCSM and #BCCEU it has become easier for people to find others with whom they can share their experiences, hopes and fears. Help is always at hand from the wonderful people who make up the online #cancer community and ‘Mets Monday’ is an excellent way to encourage interaction between sufferers and all those affected by MBC.
Sixteen years ago, I was hoping for a breakthrough in the treatment of this dreadful disease. Progress has been painfully slow and the number of women diagnosed with MBC is still far too high. Although we all appreciate that cancer is a very complicated disease, more has to be done to publicise the need for more research and better treatments.
Being part of the global community that is trying to change things for the better is a privilege.
Chris (@Chris_Jones49)
Nancy
Chris, It means so much that you took time to comment on this post. It brought tears to my eyes. Thank you for your very kind words. I’m so sorry you lost your wife to mbc and of course you continue to miss her sixteen years later. The impact of loss lasts forever. I’m so glad you are part of this online community. I hope it helps bring you comfort, and yes, it is a privilege to be part of a global community trying to change things for the better isn’t it? And we do need to do better on so many fronts. Thanks again, Chris. Thanks for all your tweets as well. Your support is much appreciated. My best.
Beth Thompson
Nancy, Your writing and advocacy never disappoint! As someone who is seeing too many young metastatic patients, (notwithstanding the fact that ANY is too many), I have to say the MBC world (as well as the writing world) is lucky to have you. Beth
Nancy
Beth, Thank you for reading and for your kind words. Mets is a “cause” near and dear to my heart for many reasons.
Beth L. Gainer
Nancy,
Excellent post, and it is wonderful how you are bringing the problem that is metastatic breast cancer to the world’s light. Rachel really opened my eyes as well.
It seems that so many of us know one or more people who have died from MBC. It’s a rampant epidemic. I attended a conference on metastatic breast cancer; here’s the post, which I believe you read:http://bethgainer.com/moving-forward-with-metastatic-breast-cancer/
Thank you for being so honest and for taking up this cause.
Nancy
Beth, Thanks so much. Your support means a lot. And yes, I did read your post. Attending that conference must have been such an incredible experience. Thanks for sharing your post about it here.
Ginny Knackmuhs
Hi Nancy
I really appreciate your Mets Monday focus and wanted to share this reblog that MBCN did of Laura Nikolaides opening speech at the recent Collaborative Summit on Breast Cancer Research. It was a wonderful meeting–gave me hope that the need for coordinated metastatic research is slowly being recognized by major funders. Thanks, Ginny
http://mbcnbuzz.wordpress.com/2013/02/09/the-long-view-of-breast-cancer-research/
Nancy
Ginny, Thank you for stopping by and for sharing the link. Mets matters. Every day.