Be an ally for those navigating the rough waters of metastatic bc

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. 

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.

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.

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 choose to 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?

Sign up for emails/newsletters from Nancy’s Point.

Be a #fearlessfriend.

Be a#fearlessadvocate

#research #MetsMonday

 

What will YOU do?

 

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30 thoughts on “I Will Be an Ally for My Friends With Metastatic Breast Cancer. Always.

  1. Thank you so much for being an ally for us. What I want people to know about metastatic breast cancer is that it’s a lot like early stage breast cancer–if early stage treatment just never ended. Your year of hell through chemo and surgery and radiation? Yeah, that’s the rest of our lives. This is why research into better treatments are so vital–imagine if I wasn’t being gutted out by chemo all the time, and could go back to being a productive member of society. And better treatments for me also means better treatments for early stage patients. Like you say, we’re all in this together.

    And imagine not having to live in fear of a metastatic recurrence anymore–imagine if mets was chronic instead of terminal, and chronic with a decent quality of life. Imagine removing all the fear of death that a cancer diagnosis comes with. It happened for AIDS, and it can happen for us, if only we put the resources into research.

    I also want to say this to my mets sisters: we need early stagers to be in our corner. We can’t alienate them by belittling their experience and then expect them to be our allies. I know just what it means to live with the knowledge that I won’t live to see my children grown, and I know the anger and frustration that comes with this life. But taking it out on people who have finished cancer treatment is counterproductive. Call out people who say and do things that belittle our experience, for sure. And call out people who refuse to listen to us or to help us. But don’t try to minimize the early stage experience. Nancy’s right, all cancer is shitty and that ours is shittier doesn’t mean theirs isn’t shitty. As Al Sharpton once said, “The most insane thing for sick people to do is to lay up in the hospital debating about who’s the sickest. We all need to unite and get well together. We should not be comparing pain. We ought to be strategizing and coalescing for all of us.”

    1. Beth, Your points are excellent. I do have to call you out on one though. (After all, you did say we should do that). I’d like to say that way more than one year of my life has been impacted (and drastically so) and will continue to be. One year, that’d be “nice”. Those with mbc have it SO much worse, I fully realize this. However, saying early stagers are all done after a year or so of treatment just isn’t true. This sort of thinking or statement can really turn away early stagers. Metsters need to be allies for early stagers too. I love that quote you shared. So true. There doesn’t have to be a hierarchy of misery, pain or whatever (even though deep down we know there is). Still, we all need to stick together. We just do. Thank you for commenting and thank you for writing that post. It made me do some serious thinking. And thank you for all your tremendous advocacy work too.

      1. My friends have a saying, ‘there’s no dick-sizing in pain.’ It’s an effort for us to remember that, and to live, but we do. I had chronic pain for more than 20 years prior to my cancer diagnosis. Not all early stagers have the same experience either. The way I run my internal ‘life’ (for lack of better way to explain) is different than most. I was traumatized, certainly, but I never once imagined it would end my life, and if it did, I gotta die sometime. I would never say that for another, but for me, that’s how it is.

        My flat chest reminds me for the rest of my life what happened. Many women suffer terrible lymphedema after surgery – which can affect other things as well (like, if you break a bone below your waist, and crutches aggravate your lymphedema, how do you get around?).

        I know how hard it is not to make a hierarchy of pain and misery, but I believe if we’re going to all be allies (and I fully support that concept and reality) we need to effort that.

        1. Grace, Thank you for sharing your valuable insights. And I agree about not creating that hierarchy of pain and misery as much as possible.

    2. Thank you for writing this. If everlyone who has the resources and power to help, asked their chosen group in need what they need, rather than telling them, this world would be much changed for the better.

      1. Alison, I agree, everyone should use resources available to help bring change. And yes, absolutely, ask what people need, don’t tell them. So important. Thank you for commenting.

  2. Thank you for this Nancy. For me (at stage 11b), I try to educate, I am not done cancer, I will never be done cancer. That is not a negative outlook; it is a statement of fact that I need to repeat to everyone who asks me if I am OK/clear/cured or whatever the expression is that says that my cancer journey is over.

    1. Wendy, Thank you for trying to educate and I agree, saying you will never be done isn’t being negative. You are sharing your reality. Thank you for reading and sharing some thoughts.

  3. Nancy, this is an excellent piece! And one I totally agree with. Yes, I do believe there’s a serious division. I think part of this is the fact that many patients know so little about their disease, probably by choice or because of denial. Or because some feel so powerless about it that they would rather just look the other way.

    But are doctors communicating all the facts?

    When I was dx I remember I was petrified! I thought I would become stage 4 right away. Doctors kept telling me my dx was serious but not so serious. But I saw family members die from MBC. I saw what they went through — one was an early stager before becoming stage 4. I was not in denial about my situation. I knew and still know I can become stage 4 at any time, which is one reason I consider myself an ally. I understand that whatever progress we accomplish for MBC would impact me and everyone else.

    The one gap we need to close is the misconception that early stage breast cancer = ‘a cure’. I think this division can improve by educating more. It starts with doctors at cancer hospitals. They are the ones who should lead with facts. Like Beth Caldwell stated in one of her articles, some doctors think we can’t take it. But I think we don’t have another choice but to take it if we want progress. There’s also the “business idea” about what’s profitable vs. not profitable.

    I wish I could be doing more for the MBC community. What I do try to do is to educate others. I don’t lie or pretend to make others feel comfortable. I share some things on my blog as well as on social media. I support organizations who are focusing on MBC research, such as Metavivor. I listen.

    I am an ally with you.

    1. Rebecca, I’m not sure how serious that division is, but Beth’s post did make me think more about it. I don’t think doctors always communicate all the facts either. Of course, we can’t make blanket statements about them either. My oncologist has never called me cured. At every visit he draws his little diagram about my odds for recurrence… Most of us wish we could be doing more for the mbc community; I sure do, but the important thing is to do something, and that starts with listening to what they say they need. Thank you for reading and for being such a wonderful ally. xx

  4. Rebecca’s comments really resonate with me.

    I think there is something of a divide but I sometimes wonder if the MBC community doesn’t contribute to it and, perhaps, blame the wrong parties. And I do not say this to blame anyone but to perhaps redirect some of the hurt and resentment that the MBC can sometimes project onto the rest of us.

    I’ve never drunk the pink koolaid – hated it for years before dx. It offers as little to me as it does to my Stage IV friends. Thus, I find myself thinking that it really doesn’t serve those with bc, at whatever stage, very well. So please don’t hold it against me that PK (pink koolaid) doesn’t meet your needs if you’re Stage IV.

    Secondly, anyone with bc who doesn’t live with concern that it will recur and/or metastasize is missing a big piece of the puzzle. When I look at Stage IV, I think “there but for the grace of God go I – FOR NOW.” I’m all too aware of the implications of metastasis – just about as aware as I could be without actually being there. I want better solutions for ALL of us and I want them much sooner rather than later.

    I will also agree with Nancy that it’s not a matter of giving up one year of my life and then being “fixed.” No way, no how and I resent the implication that this could be the case. My life and my body are changed forever, some effects will be with me for the remainder of my life – and that life suddenly seems potentially shorter and more fragile than it did two years ago.

    I think the bigger problem is the breast cancer industry – the PK promoters, the societal urge to downplay the disease, the organizations that are more interested in fund raising than cures. Yes, there are lots of “early stage” bc patients who are extremely naive about the disease and how it impacts others but I don’t think we can blame them for that naivete. Yes, they need to educate themselves (we all did after diagnosis, right?) but I don’t think they are willfully blind nor choose to ignore those who are metastatic. Let’s call out the organizations and other real culprits who contribute to this issue, let’s support each other however we can, and let’s not look for fights to pick with each other. Let’s educate and advocate – for ALL of us, with the urgent needs of the MBC community fueling the urgency and persistence of our efforts. Let’s not allow the PK to divide us nor lead us to see divisions that are superfluous. Let’s see ourselves as a whole and act towards each other as we’d like to be treated and seen.

    I’m sorry for the length of my comment and for any hackles it may have raised.

    1. Julia, Interesting perspectives. I don’t think the mbc community has ever been blaming the early stagers. Have toes been stepped on? Yes. Have experiences of early stagers been downplayed by some. At times. However, the frustration and anger has been directed at major players (organizations earmarking inadequate research dollars, for ex) and as you called it PK. I do completely agree with your points about the bc industry and that the PK helps none of us. Lots of incomplete information has been floating around for a long time. Lots of work to be done yet, and yes we need to all work together. Thank you for sharing your thoughts.

  5. Hi,
    I definitely think there is a divide but the divide is more prevalent in the stage 1 and 2 vs stage 3 and 4. If you look at the analogy of car accidents and see the stage 1 and 2 as a car accident where all you see is a small dent and the stage 3 and 4’s as being totaled you may be able to see the divide. I don’t think the stage 1 and 2 receive the same amount of support that the stage 3 and 4’s even though the frame is bent on the stage 1 and 2’s car, no one sees that damage because we still have our hair and probably still have both breasts. Stage 3 and 4 most likely have gone through chemo and have lost their hair and probably their breast.

    Finding support, at least where I live for early stage breast cancer is difficult.

    I think we should all be in the same boat as well, unfortunately, it isn’t that way…..

    1. Sue, Interesting point you make; I’m not sure I agree or maybe it’s more that I’m not properly understanding it. The support for metastatic disease has been lagging way behind for decades now. In my view, support for early stagers has always seemed “stronger” because it more readily fits the dominant societal narrative of what bc is “supposed to look like”. Having said this, I’m sorry you have found it hard to find support as an early stager. That isn’t right either. Every person diagnosed with any stage deserves support, validation and so on. You deserve nothing less too. And I know sometimes where we live impacts this too. This is why online support can be a godsend. Thank you for sharing your perspectives.

  6. Nancy, this is an excellent post, and I’ve enjoyed reading the comments in response to this post. As you know and everyone who has had cancer knows, this disease is so complicated — from a physical, psychosocial, intellectual, spiritual, etc. level. I always thought people of all stages should support each other. I have helped my friend Faun, who had MBC, taking her to almost all of her chemos and helping her in a number of ways. I’m glad I could be there for her; she had it so much worse than me — it breaks my heart to know how much she suffered and that I couldn’t do much to alleviate her suffering.

    I was also there for my friend Virginia, who died of Leukemia. I think all people with metastatic cancer get swept under the carpet of our society, and their voices are ignored in favor of the happy cancer stories. Breast cancer is especially glossed over with the pink crapola that goes on year-round.

    I know that people with metastatic breast cancer have it so much worse than me, but I also know that early stagers become metastatic sometimes. We all need to look out for each other.

    That being said, I take issue with the same point you took issue with: for us early stagers, we are lucky treatment took place and was over, but for many (most) of us, it’s not over after a year. There’s tamoxifen, AIs, and all sorts of medicines we must take that can be debilitating to our bodies, mind, and spirit. And I think people should be careful when assuming that early stagers are done and can go on with their lives.

    As you know, I and many “survivors” have PTSD from cancer fallout. While this isn’t nearly as bad as being metastatic, anyone who walks in my shoes would realize that my life is anything but ideal. In fact, I believe that most people would not want PTSD, something I am dealing with for the rest of my life.

    Early stagers and metsters need to support each other. We are on the same team, even if our circumstances are different. We should only donate to organizations that fund research. I am also glad that I helped two of my beloved friends in their time of need.

    Thank you for a thought-provoking post. It’s a hot topic, but it needs to be explored.

    1. Hi Beth, I love the way you supported your two friends. I know those memories are special ones for you. I’m sorry you deal with PTSD and yes, cancer fallout can be harsh and very much an ongoing thing. Of course, knowing you’ll likely die soon trumps everything else. But we need to support and work together if we want to make more and better progress. It makes me kind of sad that this is a hot topic. Not sure if that makes sense. Thank you for sharing and for being such a tremendous ally for all of us.

  7. For me, I don’t at all dismiss or belittle the early stage experience. After all, I have been there too. For me, I think the mets situation, my situation, is scary and upsetting to an early stage patient. I know everyone, including early stagers, needs to acknowledge the reality and the 28% or so of metastatic recurrence, but I still have an awkward time feeling badly about being a visceral symbol of their worst fears. I know, I should get over this, and I believe I can, but I always seem to feel awkward and scary when with early stagers.

    1. Laura, Thank you for not dismissing or belittling anyone’s experience, though I don’t believe anyone ever intends to this. You’re right, mets is scary and upsetting, but this is all the more reason to talk about it. Reality is reality. And again, we’re all in this together. I’m sorry you feel awkward/badly around early stagers sometimes. I would say, that’s their issue, not yours. The more we talk, discuss, share, etc. the more comfortable we should all be with one another. The more united we are, the more we can push for research and answers which ultimately benefit us all and other cancers as well. Thank you for sharing. Just added your blog to my mets blog roll, btw. Hope you don’t mind.

  8. I think it’s important for all of us to remember that 30% of early stagers will end up with mets. Our risks are too high to be complacent. As far as I’m concerned, we’re all in this together. I don’t begrudge anyone’s positive our negative feelings. We’re all entitled to them as individuals. For myself, I hope for the best, but I’m beyond aware of the potential worst, not to mention the incredible losses of those dear to me. So, I’m highly motivated to advocate for all.

  9. I have never been early staged so I have no idea how they feel. I think I can empathize with their fears. I have never met anyone in my town with mets. There are support groups for early stagers but zero for stage 4. I am flying from Florida to Philadelphia to talk to others metastatic women in person. It’s hard when your surrounded by a world of survivors and you don’t consider yourself to be one.

    1. April, It’s sad you can’t find a support group near you. Do you not feel comfortable at the regular sort? I always hate hearing that, but I know it’s often true. It’s wonderful you are going to the event in Philly. I hope it’s a wonderful experience for you. I can’t wait to hear about it and will try to follow the hashtag if I get a chance this weekend. Thank you for sharing. You said things early stagers need to hear.

  10. 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

    1. 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.

  11. 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.

    1. 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

  12. 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. ✌️❤️

    1. 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.

  13. 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. http://www.onewomanmanylakes.org

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