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I Will Be an Ally for My Friends With Metastatic Breast Cancer. Always.

Recently I read an insightful post about what being an ally means by my friend and advocate extraordinaire, Beth Caldwell, who blogs at The Cult of Perfect Motherhood. Beth manages to do incredible advocacy work while also dealing with metastatic breast cancer. She’s also a wife and mom. Her voice is one of reason, inclusiveness and calm, but also one that says, come on people, let’s get things done.

Update:  Sadly, Beth died from metastatic breast cancer on November 2, 2017.

One point in Beth’s article that really struck me was this one:

The division between early stage and metastatic breast cancer patients is a serious one.

And also this one:

An ally is someone who not just cares about a community in need, but does something to support them. And what that something is, is what the community says it needs, not what allies think that community needs.

How to be an ally for those with #metastaticbreastcancer

I must admit, the first point, made me sad and if I’m going to be really honest, it made me bristle a bit too. (walls we build in Cancer Land). Hang on, I will try to explain.

Why was point one upsetting?

Well, the sad part is obvious. I hope. And as for the bristle part…

Well, I have never been one to drink the “pink Kool-aid”. In fact I hate the “taste” of it and always have. I have always been very uncomfortable with the way breast cancer is too often portrayed – as some sort of pink parade you take part in by doing what you’re told, plastering on the fake smile and lo and behold emerging as a new and improved version of your former self, and so on and so on.

What complete and utter bullshit, right?

Partly because of my disdain for this idea of “smiling your way through cancer”, I have often felt like a misfit in Cancer Land.

I don’t accept (and never have) the early stage, “dominant narrative about just staying positive,” that Beth refers to. I didn’t/don’t fit in with this group. And I don’t want to. It’s one reason I wrote my memoir.

I do not have metastatic breast cancer, though I have witnessed its ugliness up close. And obviously, I do not want to fit into this group either.

Again, there’s that misfit thing…

But I also know there are many others out there like me who have never jumped onto the just stay positive, ignore the metsters, pink bandwagon either. Or if they once did, they have since hopped off.

Perhaps it’s naive of me, but I have always believed we are all in this breast cancer boat together. I still do. I still believe it’s one for all and all for one. At least I want to believe this is true.

But maybe I’ve been kidding myself. Maybe we all have been. Maybe this is the real reason I bristled. Maybe Beth is right about that division after all.

Why?

Because metsters have not been feeling like they are in the big boat with the rest of us, aka, the early stagers.

Just because we think they’re in the boat, or want them in the boat with us, this doesn’t mean they are.

(Please excuse the bad boat analogy).

Metsters have far too often been left out thrashing around in rough seas with maybe a tiny, totally inadequate life preserver occasionally tossed their way. (The life preserver is supposed to represent the 7% of research dollars earmarked for metastatic research – again, excuse inadequate analogy).

Too often they feel left out, not listened to, not cared about and of course, regarding funding for metastatic research, profoundly misrepresented and underfunded.

I want them out of those rough waters. I want them in the big boat with the rest of us.

I want it to really be one for all and all for one.

So yes, I agree with Beth.

Being an ally for any community in need, means more than caring about them – but that’s a good start. It also means doing something for them that they say they need done, not what we think they need done.

So no, Joan Lunden, it is not appropriate or helpful for you to suggest that metsters should just stay positive. (What does that even mean anyway? I think it might have more to do with “quieting down”). In fact, the exact opposite might be way more beneficial advice as far as trying to stay alive.

Metsters have to get feisty. They have to get demanding. They have to get loud. Yes, they have to get angry! (And btw, being any of these does NOT mean anyone is being negative).

Their very lives depend upon it.

And those of us who genuinely care about them have to get that way too. We have to do more than care. We have to act.

Beth is right. Regardless of stage (or no diagnosis at all), we all need to work together. We need to listen to each other in order to build trust and understanding. And this goes both ways. The experiences of early stagers should not be downplayed either. Both “sides” need to open their hearts. All stories need telling. All experiences deserve validation ‘cuz all breast cancer totally sucks. All cancer sucks.

Voices of metastatic breast cancer patients should not be silenced. No, they should be amplified!

And none of us should turn a blind eye when a major player such as the National Breast Cancer Coalition appears to ignore the needs of those presently living with metastatic disease. (Click on above link if you didn’t yet).

Prevention is important. But so is helping those dealing with metastatic disease now.

It should never be an either/or thing. It’s a “both” thing. It’s an all inclusive thing, or should be.

So what can the early stagers do?

What can anyone do?

I shared a few easy things in this earlier post.

We can all do something because we can all listen to those in need of our support. We can listen to what they say their needs are.

We have to listen. Really listen.

Then, if we’re able and based on what we learn, we can further act.

Because again, as Beth said, an ally does something to support the community she/he cares about.

I will be an ally for my friends navigating the rough waters of metastatic breast cancer. Always.

What about you?

If you have metastatic disease, what’s one thing you want the rest of us to know about it? What specifically do you want others to do to show support?

Do you feel there is a serious problem with division between early stagers and those who are metastatic and if so, what can we do about it?

What’s one thing you will try to do to support those dealing with mbc?

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Julie Martin-Beaulieu

Monday 6th of July 2020

I love this post. Not only about the understanding of being an ally but also the understanding of “being positive” and the potential negative impact that can have on us. I do tend to have a positive attitude and outlook about my situation but I also embrace the times when it just sucks. I have to keep it real and cancer sucks. Period. Thank you for articulating something I have been struggling off and on with.

Nancy

Wednesday 8th of July 2020

Julie, I don't know how else to deal with this stuff other than by trying to keep it real. Thank you for reading and for taking time to offer some feedback.

Mary Gooze

Tuesday 21st of June 2016

Thank you for your insightful blog. Much has been said about this topic, but I think we now need to DO something. I've begun a campaign to draw attention to mets and how everyone can become an advocate. Visit my webpage and you can see how, on June 28th, we can all be active--physically and with email to rally us all to find a cure. I hope you can virtually join me on that day by wearing a bib with 113 to show your support. www.onewomanmanylakes.org

Nancy

Thursday 23rd of June 2016

Mary, I agree, the time has come for action. Thank you for sharing your link. I will check it out.

Linda

Sunday 17th of April 2016

I'm bristling, too. The wall was there in 1973 when my mom was diagnosed and I've witnessed that it's gotten even higher since my diagnosis in 2014. I will continue to be an outspoken ally for everyone with cancer and will continue to volunteer and push for research and a cure. I will keep dropping groups, both online and in person that make me justify myself as sick enough or that push the pink. There is work to be done. ✌️❤️

Nancy

Monday 18th of April 2016

Linda, There is work to be done. Lots of it. Thank you for reading and sharing some thoughts. Btw, any more thoughts on the book club idea regarding my memoir, Linda? I'm trying to figure out a way to encourage this idea because I love it so much.

Cancer Curmudgeon

Sunday 10th of April 2016

I admit I was reluctant to read this post when it came in my email because of those cancer walls you wrote about earlier. So glad I just did read it tho', because I too bristled when I read Beth's piece. I never drank that pink kool-aid (to use that analogy) and it never occurred to me to avoid people with Stage 4, or even other cancers. One of the weird advantages of having cancer in small town Mayberry I guess--we had a group for "young" (under 50) people with cancer, any cancer, so the small group was half breast, half ovarian, and we had a metster ovarian member. There was none of this rejection of metsters I read about so often. (Where I work and was treated is a weird place--small beach resort 2 hours from major cities, but oddly progressive in some ways. It is a known GLBT resort, so all this business discrimination going on in various states in the US is just alien to me--I really live in a bubble sometimes). What has happened for me, oddly enough, is that as the metsters division has been pointed out there has been this assumption that ALL early stagers (I'm including myself at stage 3, tho' I mostly hear stagers 0-2 accused, but whatever), are rah-rah, are shutting out metsters, and I'm annoyed at being lumped in with that. I've been writing my blog for nearly 4 years and I've never been rah-rah, never wrote against metsters, etc. So when these "you just don't understand because you're a survivor" (when I do NOT identify as survivor) statements have been lobbed my way, I've become alienated and my attitude has become: fine, I don't get it, so I why should I help, why should I be an ally. I realize how wrong that is, but in the interest of keeping my sanity, I simply quit a bunch of groups (including MET UP, although I think that became just for people doing action anyway, so maybe I was deleted, I don't know). I just felt like, my blog stands as a record for my views, and I'm not interested in proving my cancer crank street cred. These boxes we are put into is getting worse, and I'm just like, for pete's sake, can we not move forward--we are regressing! So yes, I "bristled" as you say. This is my problem, not anyone else's, and I'll work thru it. But I am so glad you wrote this, as always you remind me that I'm not alone.

Nancy

Monday 11th of April 2016

CC, I'm glad you decided to read my post after all. I like how your support group was/is so inclusive; that's definitely an advantage of living in a smaller community. Your point about that assumption is exactly why I wanted to stress in my post (and comments) that all early stagers should not be lumped together either. Generalizations are almost always dangerous and in this case, potentially hurtful and harmful to the greater cause. So yes, I understand that you bristled too. I would say it's not just your issue. It's an important point for metsters to realize too, and of course, most do. Support is a two-way street. Thank you for reading. And no, you're not alone. Ever. xx

Lesley Glenn

Friday 8th of April 2016

Hi Nancy. A little late to the conversation.

First off, let me say, "thank you." From a metastatic breast cancer patient. I didn't know you were not stage IV, seriously - because I have felt your writings have been inclusive and have done a great job in not dividing the two, early vs late. You touch on topics that appeal to both.

I went back and read your blog, "Walls we build in cancer land" and I think you hit the nail on the head in so many areas.

What I want people to know about MBC is this:

*Not all of us with metastatic disease LOOK sick. There are some of us who are thriving right now, climbing mountains, swimming lakes, riding bikes cross country....but we know, that we also live with a loaded gun inside of our bodies." We live the life of russian roulette everyday. I guess we all do for that matter....heck, "I could get hit by a bus today!!" (ugh..hate that analogy) I think that I make people feel good about cancer.....because if I look good, then they have their answer and do not have to do anything. I HATE THIS SO MUCH!!!

*Dont sweep us under the rug. Don't put a bandaid on an open wound that is festering with infection. The whole...."I can't see you therefore you don't exist." Help us, fund research/cure....because if you do, you might just save yourself in the process.....or your daughter, or your mom, sister, brother.....

*Prevention is "crap". BC, I was thin, athletic, ate well, didn't drink (much), had a positive attitude, meditated, was pretty much drama free...... I still GOT cancer......and then it spread. WTH??

I also agree with Beth's comment in addressing the METS community in not creating more division between us and early stage. I have witnessed it first hand....metsters lambasting early stagers experiences. Quite sad.... There is no such thing as a hierarchy of cancer experiences. It all totally sucks. We are all in this together....like a family. We need each other. We need to rally around, and create space for all of us. I, personally have also felt division in the metastatic community....that there is only one way to advocate and thats to be angry...ALL THE TIME. Thats just not me. There are many ways to advocate and there is a place for ALL of us.

My desire for a CURE goes beyond just for me and for my fellow met sisters who are in treatment....I want it for my daughter, my daughters in law..... Cancer is not going to go away unless we make it go away...and the only way we can do that is to fund a cure.

Thank you for all you do. Lesley Glenn

Nancy

Monday 11th of April 2016

Lesley, Thank you for sharing your valuable insights. You are so spot on. Thank you for your kind words as well. I am ally. Always. And, btw, there's no such thing as late here.