walls

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 defining distinction between really suffering through cancer treatment or not, right?

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.

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.

My hope is that social media also has the potential to open up discussions and in doing so, potentially to 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 more 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 when 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

 

 

 

 

 

 

25 thoughts on “Hierarchies & Walls in Breast Cancer Land

  1. This is such a tough one. As a non- metster, but one who feels certain certain my cancer will metastasize eventually, I have felt we are all part of this strange, cancer-y chain of life we are in. We support each other, work very hard for each other’s biggest concerns (money to research now), and we carry on the message for those whose voices are cut off to soon. I too have seen a great deal of animosity vented at organizations who have done so much good. It’s too stressful for me to maintain my support when I see comments like ‘fuck Susan Love’ Or ‘the blood of the dead are on NBCC’s hands’. I learned a very hard lesson after diagnosis during a survivor camp. The upshot is, even if someone is not doing things the way you think things should be done, before you complain ask yourself ‘are they helping a lot of people? Are they helping more people than I can hope to help in my own life? Maybe they don’t need criticism.’ I have nothing but love and support for those of us who are metastatic and that their days are truly numbered, I always will be there for you. That’s as good as I can do.

  2. When I was first diagnosed I joined an all stages in person support group and it was the best thing I ever did. I couldn’t believe it when I heard of other Metsters in bigger centers who were being asked to leave the group because they were upsetting to the early stagers. I got nothing but comfort and acceptance from the early stagers and eventually was able to do the same for newer early stagers.

    1. Jordana, I am glad to hear that your support group was so inclusive. It’s unbelievable to me that any bc support group would actually ask metsters to leave because they were upsetting the early stagers. I truly do not get that kind of twisted “support”. I’m not sure if you’re metastatic, but I’m inferring from your comment that you are. I appreciate your comments. Thank you.

  3. First, thank you so much for this article and I’m so honored that it was inspired by my endless rambles of the previous weeks!

    I commented a few weeks ago on your Always Be An Ally post that I struggle with the ally identity, and I still do NOT call myself an ally. Of course I don’t call myself advocate either, because the only thing I do is write a blog. As I said in that earlier comment, and as Jordana shares here, my small town support group was inclusive so I was not exposed to this shutting out of “scary-reminding-us-of-death” metsters. That is not to say I have not learned of the prevalence of that group behavior since joining the blogosphere. Perhaps my anecdotal experience was rare, but the point is, the generalizations that “ALL” support groups turn their backs on metastatic patients give me pause. Because hand in hand in with that generalization is another–one that assumes all of the non-metastatic patients or “survivors”–a label I reject for a number of reasons–are embracing the Pink, the major name organizations and so forth.

    Fed up with the generalization, I withdrew from nearly all Facebook groups and maybe the community in general early this year. As you know, I’m tired of the motonanty of cancer culture, and how nothing ever seems to move forward. And I’m sick of people assuming I am xyz and hold abc views simply because I am non-metastatic. As if I haven’t been going on about this crap for years. I’m aware there is the occasional call to stop asking Komen and others to include metastatic in their advocacy, and just form metastatic only advocacy groups because some groups just cannot change. My thought is, Komen in particular, and some others, have certainly proven they cannot evolve beyond the awareness and early detection message, although awareness has arguably been achieved and early detection is not the be all end all it is sold to be. While I’m not suggesting metastatic only group development, I do think smarter groups ready to take things to the next level should form. And I’ve BEEN saying that. It didn’t take a metastatic DX for me or many others to see all the things wrong with the stagnant status quo.

    Which brings me to my big point about the generalization and the vibe I often run into of “you cannot possibly understand what it’s like unless you are dying of mets”. That’s true, emotionally I cannot. And I don’t want to. But this kind of thinking seems an outgrowth of the “cancer taught me so many lessons” mantra–you know, the airy fairy stuff I loathe like “life is short/I’m a better person/cancer changes you”. (Cancer taught me some things, but not the expected, acceptable stuff.) I do not think recognizing that the established organizations are failing on many fronts, especially support of metastatic research, requires one to have metastatic DX. Why? Because I have a brain, I am able to look at facts, and to think critically. While I get that for a metster this is a life or death, highly emotional issue, perhaps not being a metster puts some of us at the advantage of being able to dispassionately analyze the evidence, and guess what, reach the same conclusions.

    I guess that is why I get so angry (yes, an emotional reaction) when I hear/read blanket statements that non-metastatic patients “celebrate surviving” and join in parades. It assumes that ALL of us are incapable of critical thought, that we cannot SEE the points being made by the metster community–we’ve been seeing for longer than some of the metsters have even been in CancerLand. I mean, give us some credit for crying out loud. None of us knows what it is like to stand in another’s shoes, and that is a two way street.

    Sorry for the long ramble; probably should do my own post about this, but at this point this is kind of all I have to say on the matter. Yes, it may step on toes, but my intention is to move the conversation forward. I’m sure some will read this and think, well, sure, CC gets it, why is she bitching and taking it personally? I’m not really. I can’t say I’ve felt personally unsupported by metsters, and I’m not particularly looking for personal support. This is more my general observations. No, I don’t expect metsters to preface every critique about current cancer culture with some sort of “not applicable to those of you who support us” or something. Just less of “let the survivors have their races” kind of thing. Recognize that the tide is turning, many people are starting to get it, that all the races and pink and silliness have not resulted in the outcomes promised to us (a Cure anyone?). Each year more and more mainstream critiques of breast cancer culture appear, and yes, the backlash to the backlash gets more entrenched. Aim for that middle ground of people who can think.
    Thanks again for all you do Nancy. /Wendi xoxo

    1. CC, Your series was thought-provoking, that’s for sure and btw, just by blogging and commenting here, you are an advocate even if you don’t see yourself as one. I agree with your statements about generalizations. Blanket statements about groups of any sort can be inaccurate, hurtful and in some cases even dangerous. I don’t know if the tide you mentioned is turning, but I like to think it is. Thank you for that nudge and thank you for sharing more thoughts here. Ramble any time. xo

  4. I don’t think it’s the duty of any fellow cancer patient, mets or not, to support me. Sympathize, yes. But not support. It’s TOUGH being sick, no matter what your level in the hierarchy. If fellow sufferers are angry, combative, or downright disagreeable, that’s totally understandable, and as fellow patients, we should be the first to offer understanding. After all, we’ve chosen to seek the company of others suffering from our illness, and we should do our best to learn from them and see things through their eyes.
    When I was first diagnosed, I had the comforting thought that I was now a member of a sisterhood, and that other cancer patients would welcome me into their world and help me through my treatment. Sure enough, the Pink community welcomed me, but for me the ribbons and celebrations just made me dwell on my illness. I wanted to survive, but I didn’t particularly want to be a Survivor, with a capital S. I didn’t want my illness to be my identity.
    That doesn’t mean the Pink folks are wrong. They’ve found an outlet that lets them celebrate their survival and march in parades! Nothing wrong with that! Sometimes I wish I was more outgoing that way… but we’re all dealing with our own unique issues in our own unique ways, because everyone’s experience is different. Cancer isn’t a club you can join, where everyone’s your identical cancer-patient twin.
    People who write cancer blogs deserve nothing but our gratitude – not our judgment, not our anger. I enjoy the unique points of view I find in various blogs, and once in a while – especially in this particular blog – I have a little epiphany that helps me get through life a little easier. I’m certainly not going to pick a fight with someone who takes the time to express their views. Nobody’s saying I have to agree; they’re just offering their take on this experience, and for that I’m grateful.

    1. Joanne, I appreciate your insights on this. I guess I sorta feel like yes, it is my “duty” to support other cancer patients and not just other breast cancer patients. Of course, we shouldn’t do it because we think we should, but hopefully because we care and want to. I won’t get into the “pink folks” thing here, but I think damage has been done – but that’s a whole different and very complex topic. And btw, I love pink. You’re so right, everyone’s experience is different and we need to respect how each person chooses to deal with cancer. Blogging is one way I choose to deal with it, so I appreciate your supportive words about the blog. Thank you. And of course, we don’t always have to agree. Discussion and learning should always be the goal. And empathy. Thank you for sharing.

  5. Hi Nancy,

    This is a very important post. I generally feel that metsters and non-metsters alike empathize with me. I believe Joanne has a point — that it’s not the duty of others to support me. Yet, I guess empathy is a type of support, a type of validation.

    I know the walls exist — so many walls — but the comparison game for me doesn’t work. I don’t like to think that I have it worse than so and so or better than so and so because I go into emotional overdrive (either depressed and anxious or overly obsessively empathetic). There are things I don’t want to think too deeply about.

    My goal in life is to live as much of a quality life as possible — something that we all in Cancerland or not in Cancerland have in common.

    Thank you for this thought-provoking post. I wish I could’ve written something more definitive, but I’m on unsure footing in this arena.

    1. Beth, Empathy is definitely a type of support IMO because it’s about validation, which is something we all want, cancer or no cancer. I’m weary of the walls and I don’t see the need for so many of them in Cancer Land. And again, I see walls and hierarchies as very different. Thank you for sharing your thoughts.

  6. I was diagnosed de novo metastatic in 2014. I don’t feel I put up any walls, but I have run into a few. I do look for groups, because too many friends and some family seem to have disappeared into the background. First I joined an online support group which covers all stages and I do love the interaction with those ladies, but sometimes it gets me down, because I see too many cheering that they are “finally finished with their treatment and can get on with their normal lives”. All I can do is shake my head and think: I hope so. Sometimes, I have been afraid to mention what is going on, because I don’t want to scare them to death. Usually, though, I will tell them not to be paranoid – just vigilant. I never got the chance to be where they are – or think they are. There are quite a few metsters in there, but we could use a private room in which to discuss the realities of the situation, without withdrawing from the group in general. Since that will probably never happen, I accepted an invitation to a closed Facebook group for metastatic ladies. Mostly, I get good information from them, although sometimes it can be a downer. Good sense of humor most of the time, though. I guess I’m really a group of one – passing between the two.
    It is totally astonishing how little most people know about the metastatic form of this disease – even among medical professionals. A little scary, too.

    1. Katy, I really appreciate your comments. It makes me sad to read that too many friends and family members of yours seem to have disappeared into the background. I think your advice for early stagers to not be paranoid, but to be vigilant is perfect – and much needed. This is exactly why “ordinary” bc support groups of any sort need metsters in there too. It makes no sense to not be inclusive. Also, I understand why many metsters seek out closed groups, but to me, it also seems counter-productive. Exclusion doesn’t enlighten those who need enlightenment. I agree with you, it’s astonishing how many people know little or nothing about metastatic disease. And yes, this is scary. It’s also a colossal failure – with many parties to blame. Thank you for sharing.

  7. I feel strongly that everyone in cancer land is having a shit time, and their experience should not be belittled just because they’re not having the absolute worst version of cancer. Read my post on comparative pain–I’ve been writing about this since before I had cancer.

    That said, the demand that mets patients support early stage patients reminds me of the criticism of the Black Lives Matter movement that all lives should matter. Which misses the entire point of the black lives matter movement: it needs a movement precisely because black lives aren’t as valued as white lives. If all lives mattered, there’d be no beed for black lives matter.

    Mets patients need our own movement and our own support because the existing systems in cancerland do not adequately meet our needs. The systems are designed to meet the needs of patients whose treatment will end before their death. Survivorship clinics are a good example of this: they exist to provide much-needed support to patients set adrift when active treatment has ended but the effects of those treatments linger on. This is an important aspect of cancer care and it’s not that the work of these clinics shouldn’t exist. It just happens to be work that doesn’t meet the needs of mets patients.

    So, to say that mets patients should be providing support to early stage patients because all cancer sucks (which it does) misses the point of the metastatic movement entirely. If our needs were being met, we wouldn’t need our own Facebook groups or our own organizations.

    Does this make it OK for mets patients to poo-poo the experiences of early stage patients? Hell to the no. Just like it’s not OK for Black Lives Matter activists to poo-poo the pain of the grieving family of a dead police officer. That’s called being an asshole. But I think early stage patients need to realize that creating our own spaces is necessary for mets patients, and isn’t about minimizing your experiences. It’s just that too often, your spaces don’t meet our needs, and that’s why we create our own.

    1. I am loathe to compare anything to Black Lives Matter, I do not think appropriating this extremely important issue for the black community is proper for any other group, especially not one dominated by white people. The part of that situation that I will compare is that it is completely congruent to support our brothers and sisters who have heard the terrible words, “you have breast cancer”, and still completely support those who have metastatic disease. The two are not mutually exclusive. The need for the extra understanding metsters have for each other and the formation of their own SoMe sites to provide that to each other does not mean they aren’t still part of the “survivor” community. I am part of the metsters SoMe groups to provide support and continuation of goals, because any advances may save me when I become metastatic. And survivor, you remember that some of us hate that word? We don’t feel like survivors, we feel caught in the middle, one appointment away from not being a survivor anymore. So I think we add to each group what we can, when we can. Hugs to all.

    2. Beth, I love your opening sentence. It’s perfect. I don’t think anyone is demanding that metsters support non-metsters. I just hope they would want to. Demand is a strong word. I think your comparison to the Black Lives Matter Movement is an interesting one and might have validity. I agree, metsters need a movement because the existing systems have failed, but the walls that go up can be detrimental in changing this. For ex, I cringe whenever I read a generalization about early-stagers all being part of the rah-rah, I kicked cancer to the curb club. Many of us do not fit that narrative at all and yet, those generalizations about us continue. I do think metsters should be supporting non-metsters. Does this mean I am missing the point? I don’t think I am at all. I have close-up experience with metastatic disease and I have seen the devastating impact on my family. I understand your need to create your own spaces, but the danger is in shutting out others who truly do care and want to be part of that movement. Again, those walls…I do believe we all need the support of one another because we all deserve nothing less. Thank you for sharing your important perspectives.

  8. 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!

    1. 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.

  9. 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.

    1. 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.

  10. 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

    1. 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.

  11. 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.

    1. 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.

  12. 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.

    1. 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.

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