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Hierarchies & Walls in Breast Cancer Land

A series my friend the Cancer Curmudgeon has written titled, “The Disease Olympics,” has given me the nudge I needed to finish writing this post. Check out Part 1 of her series and then follow the links to Parts 2 and 3. All are well worth a read. I’ve been sitting on my thoughts for this post for a while and finally, this seems like a good time to finish it and put it out there. My mind is still clouded by grief, so hopefully I won’t regret this decision later. As always, my intent is to open further dialogue, not to step on toes.

This discussion about the hierarchy of pain/suffering in Cancer Land originated (at least for me) with another thought-provoking post by our friend, Marie. You can read that post here.

Cancer or no cancer, how do you feel when you hear someone say, you should be grateful, so and so has it much worse than you do?

If applicable to your situation, how do you feel when someone says, well at least you didn’t lose your hair?

As if hair loss is the definition of really suffering through cancer treatment. It’s not, of course.

How do you feel when someone says, well at least you can thank your lucky stars you’re not metastatic?

If you’ve ever lost an elderly loved one, how do you feel when someone says, at least your loved one lived a long life?

If you’re like me, you might feel as if your pain is not being validated. You might feel as if your loss shouldn’t hurt as much as it does.

Such comments not only sting, they make you feel resentful, do they not?

When my mind is not so jumbled by grief, I will be writing more about the hierarchy of grief that exists too.

In this post, I want to focus on the hierarchy of pain, misery and suffering within the breast cancer community itself. Dangerous topic perhaps, but an important one nonetheless. Again, I am hoping to continue a dialogue, not step on anyone’s toes.

There’s nothing wrong with comparing yourself to others. We all do it all the time. It’s comforting to find others with similar interests, backgrounds, dreams, skills and yes ailments and diseases. It’s human nature. It’s also human nature to rightly (or wrongly) assume that the grass is always greener on the other side. Again, it’s human nature to compare, even when talking about cancer. Doing so can actually be helpful.

Lately there has been a fair amount of discussion about divisions in Cancer Land, or more specifically, in Breast Cancer Land. Personally, I don’t see these divisions as anything new. They’ve always been there, but just like with many issues today, social media has a way of amplifying things.

Social media also has the potential to open up discussions and in doing so, build unity as well.

Yes, there are divisions between the various types of cancers, of course. And between age groups. And between the types of treatments received. And between those who embrace the pink shenanigans and those who do not. I wrote about all this in my earlier, Walls We Build in Cancer Land post. But perhaps the most troubling division in Breast Cancer Land might be the one between metsters and non-metsters.

Don’t think these divisions exist?

Think again.

There’s nothing wrong with divisions and hierarchies of pain and suffering. To deny the hierarchy, is to deny reality. As one of my metster friends recently said in an email,

Dying trumps everything.

Amen to that.

The problem arises when the walls go up.

I see hierarchies and walls in Breast Cancer Land as very different things.

In Breast Cancer Land (and elsewhere), there will always be some who have it easier, and there will always be some who have it worse.

The problems arise, and become divisive, when we shut others out by putting up walls.

And there are walls in Breast Cancer Land.

One very over-simplified example is closed Facebook groups.

I know, I know. Sometime these groups are helpful, maybe even necessary. But I am finding that I am interacting less and less in certain closed groups for many reasons which I will not elaborate on here.

I worry about walls we build in Breast Cancer Land because we all need one another’s support. Metsters need the support of non-metsters. But guess what? Non-metsters need the support of metsters too. And please, not all non-metsters belong to the rah-rah, pink boa-wearing, pink ribbon embracing, I kicked cancer to the curb club. Many of us loathe stereotypical shenanigans.

I will be an ally for my friends with metastatic breast cancer. Always. Likewise, I would like metsters to be an ally for me and other non-metsters as well, of course.

Have I felt supported by metsters?

Have you? (If applicable)

Of course, many of my dearest and most loyal readers, supporters and friends are metsters. But I would not be entirely truthful if I didn’t also say, at times I have not felt supported. I could elaborate further on this, but it’s probably wiser not to.

Perhaps I’m in somewhat of a unique position. I am not metastatic, but my mother died from metastatic disease. I get it. But yet, I also am well aware that until it’s your body, well…again, dying trumps everything. Yes, everything.

Still, this does not mean the cancer experience of anyone should ever be belittled, downplayed or invalidated.

For starters, and among other things, that slippery-slope game of one-up-man-ship, or as Cancer Curmudgeon so cleverly coined it, one-down-man-ship, should be avoided whenever possible.

The hierarchy of suffering in Breast Cancer Land is real. The walls are real as well.

The hierarchy is unavoidable.

The walls we build need not be.

Do you feel there are hierarchies and/or walls within the breast cancer community and if so, do think they are more or less the same thing?

If you’re metastatic, do you (generally speaking) feel supported by most non-metsters?

If you’re a non-metster, do you (generally speaking) feel supported by most metsters?

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Hierarchies & walls in Cancer Land

 

 

 

 

 

 

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Sheri

Tuesday 23rd of August 2016

Hello, I am new here but I thought I would share another angle but it does go under the "support" dialogue. On July 1st, a friend of mine died from breast cancer. She had the disease about 6 months before I was diagnosed in 20111 and was the first to reach out to me after my diagnosis. She never let on how sick she was. While those of us in our little group we established, had surgeries, had chemo or rads - then were put on hormone therapy and called "survivors" she quietly began the process of dying. We could not understand why she continued to see her onco so frequently and why she quit her job and so on - until it dawned on us - she was not a survivor - she was still in battle and was losing. For months we asked her closest friends, what's up with ________. Her friends eyes would tear up and then say, " she doesn't want us to share her situation." She did not let us in and we felt bad about it. But it was her choice and we honored it. I still have a facebook message in her mailbox, unread, asking if I could take her out for frozen yogurt.

Ultimately, we sat at her funeral on July 1, and me, along with a few other survivors felt survivors guilt. Why her? Why not us? What is the difference? One lady who is in her 70's said, "Maybe it should have been me, after all I am 74!" My friend was only 52 - a year older than me. We were diagnosed in our mid 40's.

After some tears, we came to the conclusion it is not for us to determine they whys. Maybe we are lucky, maybe she had some extenuating circumstances, maybe it was her time and not ours. Whatever the reason, I know that survivors guilt is something many us feel and I realize, it is not for us to determine the whys.

Nancy

Tuesday 23rd of August 2016

Sheri, Your comments are so insightful. I am very sorry about your friend. It's sad she didn't as you said, let you in. But on the other hand, you tried to honor her choices. I understand about that survivor's guilt. I have experienced that too. There is always that question when another metster dies, why not me? Your words are full of wisdom. It isn't for us to determine the whys. So true. Thank you for sharing.

Alene Nitzky

Monday 22nd of August 2016

May I add something as a person who has never been diagnosed with breast cancer?

As an oncology nurse and a person who works with many people in my community with different types and stages of cancer, different ages and coming from different backgrounds and perspectives, I think it's necessary and important to have these discussions within and across individuals and groups with common concerns and different experiences. Please forgive me for butting in here which I do with some trepidation, I'm sticking my neck out here...but I want to point out that in order to improve the experience of any oppressed or underserved group, it is so important to maintain communication with the people outside the group who might inadvertently or purposely contribute to intensifying or perpetuating the oppressed/underserved status.

As a healthcare provider who has not experienced cancer myself I cannot possibly be in your shoes. I cannot possibly know in my heart and being what you experience in the process from diagnosis of cancer through whatever outcome you might have as a result of the disease and it's treatment. I can empathize to the best of my ability but it will never be enough. However, I need to know your concerns, and have them communicated directly to me. I need to make the time and listening space for you, and do my best to understand what it is that you need, and how I can go about filling that need or making change in systems to better address those needs. I understand that as a result of what you've been through and are still going through to a lesser or greater degree depending on whatever the cancer is doing in your body now, you might not have the energy, resources, or ability to assert your needs and voices.

Divisiveness and infighting and one-downmanship is a result of pain and suffering, and oppressed, disempowered groups often turn on each other when they feel dismissed and neglected. It's important to allow people to speak their minds even if it makes others uncomfortable. It needs to be said, because there is validity there. When no one is listening and nothing is changing, it takes a boiling point. The energy can't be spent on infighting, it has to be directed outward to the systems that need to change.

As a healthcare provider I am extremely disappointed and frustrated with what our healthcare system fails to recognize and relate to, and fails to serve the real needs of people. I want to make change. But in order to take those steps, I need to be able to hear people's concerns. I cannot work when there's a system that doesn't allow me to hear them. I want to be an ally. Banding together with those outside of your circles is critical. Keep the lines of communication open, don't close off. Put energy into speaking out and being heard. Keep writing, blogging, and speaking. And please welcome those of us who might not have shared your experiences, but truly want to listen and make change.

Thanks.

Nancy

Tuesday 23rd of August 2016

Alene, I agree with your points about communication and banding together with groups outside your circle and not just "cancer circles"of course. As usual, it boils down to communication and the listening side of communicating is just as important as the speaking (or writing) side of it. And you're so right, some might not have shared the same experiences, but this doesn't mean the genuine passion and desire to help make the wanted and necessary changes isn't there. Again, empathy. It's critical for so many reasons. Thank you for sharing your insights. They are always welcome here.

Rebecca

Saturday 20th of August 2016

Nancy, this is an important topic for discussion. And the reason isn't just because of the emotional support side of it, but the research side of it too. When there are divisions, we also delay progress. But I am afraid not all patients are on the same page about progress. That's for an Oct. post though.

I don't mind the comparisons in cancerland because sometimes we need a frame of reference. It's a way for us not to feel alone and to have our feelings validated. I can't say that I never thought I had it worse than others because at some point I did. But the thoughts only crossed my mind, I've never actually spoken those words, mainly because I am not living the other person's struggles.

I've been lucky that my friends who are stage 4 validate my feelings, and in fact, they have encouraged me to speak. I am grateful for that level of support. I usually keep my struggles to myself though because I don't want to overwhelm the other person who is already dealing with enough cancer drama. Yes, I've also thought others have it worse than me.

I agree there are hierarchies and many walls in cancerland (and outside of cancerland). I am not sure how this can improve. Are we expecting too much though? What would be realistic for us to do in order to notice some improvement? And who defines the constraints and solutions? Complicated indeed but necessary to address.

Thank you for starting discussions about this sensitive topic. And glad to see you back. xoxo

Nancy

Tuesday 23rd of August 2016

Rebecca, Maybe we are expecting too much. I don't think expecting non-metsters to support metsters and vice versa is expecting too much though. It just makes sense and of course it's the compassionate way to treat others. I don't know how to improve the walls situation. One conversation at a time I guess. Thank you for sharing some thoughts. And I'm not really back yet. But thank you.

Kathi

Saturday 20th of August 2016

This is a tough one. And I have to admit, I've felt the walls and 'cliques' a lot more lately than I ever have. In fact, I'm sorry to say that one of the things I plan to do this weekend is to unfriend folks on FB with whom friendship has been a one-way street, all take on their part, and the only giving on mine. My metster friends who are truly friends know that I will always be an ally, and we know that any of us early-stagers could be diagnosed with mets tomorrow. But our friendships are based on mutual caring and affection. It's not all one way. After all the shit we all go through, I haven't got the energy any more for any other kind of relationship. And I certainly have nothing to prove. Thanks for tackling this, Nancy.

Nancy

Tuesday 23rd of August 2016

Kathi, It is a tough one, but all the more reason to talk about it. How did your facebook clean out exercise go? I've been thinking about doing the same, but haven't gotten around to it yet. A friend is a friend is a friend, there are no "qualifications" or tests to pass in order to be one. A friend is someone who accepts you, warts and all. Of course, everyone certainly can choose whomever they wish to hang out with online or otherwise. But supporting others in CancerLand seems like something we should all want to do, whether we are friends or not and whether we are metsters or not. And I know what you mean about that energy thing. Thank you for chiming in on this touchy topic.

T Pal

Friday 19th of August 2016

As a fb admin of a mbc group, I have fallen on my sword many times trying to please the masses! This group was started over 4 year's ago by a now deceased metster when she and others we're being censored for their views on a website for mbc. It was all metsters at first, no men we're allowed, then someone said "no fair, men get mbc too" so we added them! Then some said I don't like discussing xyz in front of men and left the group. Then it was about "science vs alternative", then "why can't early stagers join". I tried to appeal to everyone however no one was ever happy. I was even cussed out and humiliated by group members for my "flip flopping", they quickly bolted and found another fb closed group they felt more comfortable in which basically had the very same issues! Was it me they didn't like? Maybe, because I wasn't sick enough? I've even been accused of lying about being a metster. I, being a metster needed support too and when the members abandoned my group (inherited by the former metster) I followed them to their group as the dialogue was there, the information on treatment options, side effect issues, palliative and hospice info was all there! Needless to say, I was kicked out of that group for being labeled a "troublemaker" because I had fell on my sword once again advocating for the right of a young woman to join who wanted to know how to help her dying mother. She died 2 weeks later. Did her and her mother not need support and understanding too? The admins of this group said the young lady could not join because it wasn't allowed yet many members of that group we're there because in the "about" section of the group, it stated "stage iv members and family of" we're allowed to join. I upset the group by pointing this out and as a result, members who were non-metsters spoke up and said they would leave prompting an angry response from a certain admin that immediately blocked me from the group. 3 things fundamentally wrong here-1. A click is a click and your "out" if you ain't "in". 2. I have been cast out of the garden like a bad weed having to fend for myself in the isolation of Googleland, no more patient perspective or current medical options relative to mbc treatment and research for me! 3. I am more than likely not the only one who has been cast out of a group that has so much to offer yet what are our options now? Where was our compassion? Maybe I said something the wrong way, which is very easy for me during steriod treatment or whenever my pain is unbearable! I'm sure someone will figure out who I am and attack me for my post but but I wanted everyone to know that living as a metster is one thing, add to that the isolation you feel when being kicked by your fellow metsters! I have witnessed first hand the divide of non metsters vs metsters. I do see how the metsters say the non metsters "don't get it" but do they ever look beyond their own pain to see other's and truly try to "get it"? I still post relevant information about mbc in my group but I have no idea if anyone is ever reading it because no one ever talks to me anymore, it's been months, probably 2 year's since anyone from my group has held a conversation with me but I keep posting because their might be that one person I am helping so it is what it is!

Nancy

Tuesday 23rd of August 2016

TPal, Your comment is incredibly sad. Of course, I don't know all the details, but based on what you've shared here, it seems you were treated quite unkindly. It's very sad some groups, including some facebook groups, become cliquey and divisive. Treating others in a mean-spirited fashion is troubling and serves no useful purpose. Good for you for continuing to post relevant information in your group. I don't know what the answers are but, thank you for sharing.