It’s Weird

I read an essay today that described a kind of alienation felt by a woman with stage iv breast cancer.  Friends fall off the radar, neighbors don’t know how to treat you or what to say, you’re faced with an inability to relate to the lives of others, and other things.  I can honestly say that I can’t relate entirely to this but, after all, each of us is different.  But I can see how it happens and why.

The most alienation I have felt has nothing to do with close friends or family, but in a virtual reality known as the discussion board.  When I was first reaching out to find information and connect with others going through the same hell, I found a thread started by someone who was diagnosed in 2012 and titled it “2012 Sisters.”  Folks there are smart and caring and served as a tremendous reservoir of strength and knowledge for some months.  Even though people were newly diagnosed and not (as far as I am aware) diagnosed with advanced disease, it was pretty much the first place I would check every day.  I connected with some folks there and value those connections tremendously.

But as I got further into the complications and the reality of advanced disease, women in the group were (thankfully) recovering from chemotherapy, moving through surgeries with varying stages of ease or complication, hair was gone and back again, and for many treatment ended or was close to ending.  I felt weird on two fronts: 1) I couldn’t truly understand the journeys of these women because I didn’t go through any of that chemical warfare, and 2) my diagnosis was final and no one–rightly so–talked about what it was like to deal with a diagnosis such as mine.   As more and more moved into the the sister-topic, 2013 Survivors, traffic lessened significantly and I no longer feel any profound connection.  People were loving and cool and one even wrote, “You’re a survivor, Scorchy!”  And I loved that.  But I’ve faded away.

No one is at fault.   The same caring and awesome people I met there are still caring, awesome, and brave and I check in more as a lurker now and enjoy reading  about their progress.  But beyond an initial diagnosis of breast cancer there isn’t an anchor that binds us anymore.  I empathize with them, but I can’t fully understand.  They empathize with me, but they can’t fully understand.  It is what it is.  And, honestly, if you have someone who has been diagnosed stage i, gone through their personal hell, and emerged as a popularly termed “survivor,” I’m betting they don’t want to be reminded of the tragic fact that far too many women who emerge victorious are reacquainted with their old enemy in subsequent years.  They could be one of them; and because of that I hesitate to comment.   I feel kinda funny, you know?  Like a big red flag.

Capture

So I go to the stage iv boards.  They’re okay: informative, supportive, and filled with equally caring and awesome and really brave individuals.  And it’s good.  But I find that stage iv boards are, not surprisingly, less filled with urgency than the others.  Less likely to be involved in a grand and twisted adventure of surgery to chemotherapy to second surgery to recovery.  Subdued from the knowledge that individual crises or surgeries or treatments aren’t the way to survivorship, but merely maintenance.  They maintain the new norm.   There is no “victory.”  And more individuals pass through the discussions without staying put.  That is, many friends are made here, but there is a distance.  People get their information and move on.*  You get too close, then that person could depart from the group.  Forever.

When you see how people react in the virtual world, it is no different than how they react in the real world.  I am very fortunate.  I keep my circle of friends pretty close–I’m not one to have dozens of friends and multiple parties to attend weekly.  (That’s too much like work.)  But my real friends remain my real friends, colleagues who were largely strangers aren’t strangers anymore, and I’ve met many women who have advanced disease, those who advocate on behalf of women with breast cancer writ large, and also those who treat this disease in its numerous forms.  And, honestly, if anyone is keeping their distance I don’t notice it because I don’t care.**  To paraphrase a popular refrain, I got 99 problems and that ain’t one.

All of us have been on the other side of cancer.  The side where you don’t know what to say, or how to act, or feel that your desire to help is awkward at best.  And those of us with breast cancer realize that even in Cancertown (a noun I borrow from the late Christopher Hitchens) we are separated into stratified neighborhoods.  Those based on stage, manifestation, and outcome.  Depending on where we are in Cancertown we feel fortunate, troubled, scared, or marginalized.  The weirdness of daily life in an even weirder construct that exists inside of a larger stratified world.  And perhaps it is within this weirdness where circumstances will leave us feeling alienated.   But it is also in this weird place where we have the opportunity to either find ways to connect or just decide to move on.

________________________________________
* Important to note that this is purely observation on a dozen or so discussions.  It may not apply to everyone or every topic.

** When I did feel abandoned by my nephews, I called my sister and told her that I needed to know that I am loved!    Needless to say, now I know.

This entry was posted in My Stage IV Life, Stage IV Musings and tagged , , , , , , , , , , , , , . Bookmark the permalink.

45 Responses to It’s Weird

  1. Excellent post! What you said about cancer having stratified neighborhoods: I fall in the middle, went through the gamut of surgery, chemo, rads. I noticed early on that I couldn’t relate to those who didn’t experience the horrors of chemo, which were quite brutal for me. Yet, when I speak to my friend who has mets, I feel guilty for complaining about chemo, which left a wreckage. He’d made a comment which let me know I sounded trivial. Then the tables are turned and I feel a sort of “survivor’s guilt,” or the awareness that he feels we’re not the same because he undoubtedly won’t see his children grow up. He’s been robbed; I’ve been granted a second chance at life, we think and hope. He doesn’t have much hope. I try to acknowledge everyone’s experience as valid, but there is certainly a disconnect on some level that is what it is.

  2. So glad that JBBC’s weekly roundup allowed me to find you (thanks Marie!). What I have found when working on a project that has to do with cancer is this: there are different categories of cancer just as there are different categories of human beings. We all share similarities and differences. We can choose to look at ans identify with either the similarities or the differences and seek what you need from any group.
    We are all human…then some of us are female…then some of us have cancer….then some of us have breast cancer…then some of us have stage l, ll, lll, or iV. Depending on what kind of supprt you need, you can get it from any of the groups mentioned. (there were times when I just wanted to be with humans….then sometimes I needed to be with just women to “get what I needed”)

    I find the more I try to stick people in a pigeon hole, the more pigeon holes I find.

    I have friends with stage IV breast cancer, and they all have different attitudes. one sees herself as a “survivor” simply because she’s here and functioning and being productive, and the other is pissed…I mean really pissed and see’s herself as her own category.

    I think it’s great that there are groups and blogs and places for all people to get the support they need based on their diagnosis, stage, treatment, situation and on and on. With this disease, let’s face it: One size does NOT fit all.

    Great piece (the eggs illustrate it so well….especially the fact that on the inside, we’re all the same)

  3. Pingback: Weekly Round-Up « Journeying Beyond Breast Cancer

  4. Scorchy
    Very thoughtful and well written and easy to identify with your sentiments. I feel the stageIV message boards are good for many people, but I have to withdraw from them sometimes. Especially if you’re doing well thus far with stage IV, you don’t really want to know in detail what may be ahead for you. I can’t tell you how many times I’ve said–OMG, I didn’t know that could happen!

    • Scorchy says:

      You are absolutely right. On one hand you read about someone with lung and bone mets that is NED for ten years. Then you read about someone who is dead within a year. Or others who wish to forego treatment except for palliative care. And then faced with these stories and these choices your mind goes wild and you can quickly go insane! Probably just like the people whose words we read.

  5. Rachel says:

    Scorchy – ever since the note on BCO about this post, you’ve been on my mind. Something about you reminds me of my late grandma – who battled and beat BC. She beat a few other cancers before she was knocked down by one that was a result of her decades ago cobalt radiation to defeat her BC. But she beat the odds and surprised the docs many times. I am always keeping an eye out for your posts and enjoy hearing from you when you pop in. I am terrible at following any blog – combo of too lazy, too busy, and not wanting to get addicted and let the computer take over my life – but that said, I intend to follow yours from now on. You have a lot to say and teach. Please keep lurking and posting on BCO – we need you and your insights (not to mention sarcastic sense of humor) there! Always thinking of you.
    –ramols (Rachel)

    • Scorchy says:

      Rachel, The outpouring of love and friendship I have received from all of you on the board has taught me a lesson. In this weird place we are often afforded opportunities to forge connections–if we just look a little further beyond our fears. xoxo

  6. Susan says:

    Wow Scorchy you put this so well. What I love about you is the way you recognize the difference between what happens with those that get a diagnosis of an earlier stage compared with a stage IV diagnosis that you got originally. You have managed to bring together people who truly care regardless of what stage they are going through. I think that it must have been really hard to start off with your diagnosis, yet you recognize that some of the treatments for early stage are pretty strong and I hope your treatments are consistent with always thinking of your quality of life first.
    Spot on Scorchy. I love your blog. Hugs! – Susan

  7. What THEY said, What they ALL said, What YOU say…. I am starstruck and in complete awe of you. I LOVE you….

  8. Juneaubugg (aka Jennifer) says:

    Reporting from the BCO

    Scorchy: 😘 I so GET IT. when you listed all the things we have endured I cried. I guess our pain and discomfort has come at the beginning of our journey, yours well… Will be an ongoing battle to maintain. Just know though, that being a part of your LIFE and CELEBRATING THAT is so important to me. So I will continue to read your blog; and make the damn time to pick up the phone and call you! I keep meaning too… I seriously need to find some balance in my life. It’s busier then before I got diagnosed. …all of a sudden people want to be in my life more. What’s up with that! 😉

    • Scorchy says:

      Like I said on BCO: I’m sure my shit will come later. And I will curse cancer out the entire time. Fucker that it is. But I hope it comes much later. And positive energy attracts positive energy–no mystery to me why so many people want to be in your life now. JUST TAKE CARE OF YOURSELF FIRST!

  9. Such an eloquently written post. Life is all about connections isn’t it? Some of them deepen over time and some dissolve entirely for a wide variety of reasons. Even in Cancertown the connections (separated in stratified neighborhoods, love that description) are varied and fragile for many reasons as well. I admire how you write about this with compassion and without judgment. Thank you.

  10. Your last line, “But it is also in this weird place where we have the opportunity to either find ways to connect or just decide to move on.” – perfection. That holds true no matter the type, the staging, or the possible outcome of DX. Even cancer warriors (I prefer that term to “survivor” as more inclusive and less victim-y) can shift from day to day, or hour to hour, on how they feel about what’s happening in their lives, and their bodies.

    The challenge for all warriors, particularly Stage IV ones, is figuring out how to deal with the confusion and wackness in our own heads, and in the cranial collectors of our friends and family. I was lucky there, and this post reminded me of how very not-helpful some of my discussion board conversations were while in was in treatment. Deciding what and how to fight your battle is ultimately up to you. What I found challenging was a lot of pushback on some of my decision tree, where those who had taken the journey before me seemed to demand that I have exactly their experience. I guess to validate their own decisions about their own treatment.

    I salute your sangfroid, sister. Long may you wave, and have the ability to break it all down so damn well in words.

    • I realize that someone might construe – due to syntax-fail – that I am Stage IV from what I said above. I am not. Sorry for the mangled word arrangement.

    • Scorchy says:

      Thanks Casey. I like your observation about folks wanting to validate their own decisions and about treatment through you. I can definitely see how that would go down.

      As for my sangfroid, I thought I had that pretty well hidden in my cleavage pocket. I’ll have to be careful from now own. THANK YOU for reading The Boob.

  11. Beautifully written, Scorchy. This is kind and compassionate and balanced. You have the gift of describing where you are while seeing everyone else in the landscape simultaneously. You have informed me, and I’m grateful.

  12. Michelle says:

    Scorchy- bear with me because I am not the excellent writer that you are. I actually skimmed your above post but I am for thread 2013/2012 thread that you me mentioned above. Please remember when I type that I am not the best at putting my feeling into written words. My you have been an inspiration and fear to me. With that said athough I am stage III and for now deemed cancer free this does not take away the reality that some day I will deal with a reoccurrence of the fucking diease. I was at a event last night in my home town for Paint the town pink, it is a fund raiser for breast cancer research that then city I live it put on every year. I had some tickets to the hockey game they put on and thought it would be a great idea to go. But it was paralyzingly to me. I do not know how to explain it but for a person who is stage I or IV the fear of death from this diease for me does not stop. We love your openness to share with us on and you have been our rock! You are one tough SOB! Your post today made me cry tears for all of us because we all want to say we are suvivors but wait hour by hour and test by test to hear those word it has spread. I know that I am not explaining myself well here but I just want to say you are never alone with us! You have been through so much with us this year and you dam well deserve to continue to have our support and give us yours! You hold your dam head high and know we all love you and you are amazing!! mccok301

    • Scorchy says:

      Oh Michelle. You are so sweet. I can understand how one might feel that way at an event that benefits breast cancer–or cancer of any kind. It’s PTSD. Criminy, you’ve gone through hell and back and it hangs over you like a black cloud. I have had friends tell me that over time their fear lessens, but it never really goes away.

      I have this fucking disease. But thank the gods we have one another to get through it! You’re awesome,McCook, and brave! Keep on keepin’ on!!

  13. I am so glad I “subscribe” to your blog and get the emails. I am not stage IV and have had chemo and will have radiation but I wrote on my own blog after finishing chemo last week that here in Vancouver our chemo rooms do not have big bells~~I said I did not really think I wanted that; my reasons were more about the possibility of recurrence but also I don’t see it as a cause for everyone in the many rooms to see it as a celebration; too many women I talked to were Stage IV with recurrence. Not sure what I am trying to say here but I so much appreciate your sharing and especially this last post. I bought “Mortality” and after telling a couple of people who could not understand why I would want to read his book, I don’t mention it. What a writer and I thank him for those last Vanity Fair “posts.” Thank you too.

    Marian

    • Scorchy says:

      Mortality was really good,wasn’t it? It showed a side of Hitchens you don’t normally appreciate. He will be missed, I know that!

      My heart sinks every time I hear a woman had been diagnosed stage iv. I was diagnosed from the get-go,which is bad enough. But I think of women who already went through chemical warfare and THEN get this diagnosis? Crissakes! That just makes me crazy!!

      I can see a ball because you’ve finished the treatment. But often it’s seen as a sign that you bear cancer. And, as far too many people know, you never really know if you’ve really beaten cancer.

      Thanks so much for reading Marian. 🙂

  14. Lexie says:

    When I first found your blog I read everything from the beginning. I have always felt like the girl with no parents since they had passed. Now I feel like I am the girl with no parents and who has cancer. I have had friends flee for both reasons. They all suck no matter what. Thank you for letting us in your world and hopefully somebody will read what you said and realize you know what I was an ass to a good friend of mine and make sure it doesn’t happen again. xoxo

    • Scorchy says:

      Lexie, I’m so sorry. Well, you’ve got your virtual buddies and we’ve all got your back! Fuck those people who aren’t real friends! They’re no good. I hope they realize what they’ve done while you’re still around to be a good friend!

  15. dear scorchy,

    i find your post incredibly astute, but more so, without judgement and open to all sorts of connections for BC people to come together, share stories, learn, and become some of the most awesome friends on the planet. i only have experience with reading blogs – i opened a twitter account, but haven’t one
    goddamned iota of what to do with it! and facebook is just too way out there for me to maintain privacy.

    i want you to know that no matter where this BC journey leads you, or, for that matter, me (dx’d st IV met BC in 2012, now ned) and all the other magnificent souls who have taken me in, welcomed me, and made me feel that i can make some sort of contribution – to thank, to help uplift, to validate, console, to rant and rave with, and share a good laugh or shed tears with, and, at times (many times!),make a complete fool of myself – I’M IN. i would not trade one BC blog post that might have made a difference to help someone in a dark hour, nor one that allowed me to experience another person writing words of truth so exquisitely that they remain etched upon my heart and soul to shield myself from another’s pain that might one day be my pain.

    i find it ironic that 3 of my sisters, whom i have adored since birth, abandoned me during our early struggles when hugh was dx’d with multiple myeloma, during his first stem cell transplant, when i was terrified i was on the threshold of losing him. as you can imagine, when i was dx’d with BC, i knew they would not/could not provide any meaningful support. so i let them go, let myself grieve for the loss of them, and moved on. as is so often noted, to my great surprise and joy, i found myself showered with empathy, kindness, and understanding in the form of being a commentor – from complete strangers. who are strangers no more. you among them, dear scorchy, you among them. thank you for that, thank you for continuing to write your big, bodacious, feistily humorous, enormously enlightening blog, throwing out challenges to think both in and out of the box in a way that’s simply your own.

    i know you don’t like a lot of mushy stuff, but i’m going to say it straight out. i love you, scorchy, and i love your blog. KEEP WRITING!!!

    karen, TC the commentor

    • Scorchy says:

      It is upsetting when people just abandon you. I’ve gone through this, but for something else a long time ago that–thankfully–was healed with time. We are fortunate that these social networks fill a human need for support and encouragement. I feel fortunate that as we hurt we help others and, in turn, help ourselves.

      I love your comments! Thanks so much for reading!!

  16. The Accidental Amazon says:

    Scorchy, this is a really articulate post, with all sorts of reverberations. I have found it interesting to note the different sorts of connections I’ve made in various parts of the social media universe. The differences in the kind and depth of connections — on peer support forums, on Facebook & Twitter, and in the blogosphere — have been fascinating to observe. I think the peer forums, by the way they’re are set up and the particular needs they serve, can inadvertently underscore the differences in our cancer journeys. But the best pals I made on the forums travelled over to FB, where we all got to know each other better. In a way, I think the best connections I’ve made in Cancertown have been in the blogosphere. I suppose it’s inherent in how & what we share on our blogs that can qualitatively deepen the connections among us. Our cancer differences, our mets or non-mets statuses, these don’t seem to separate us bloggers as much, at least in my experience. I’ve also had the great good fortune to meet several of my cyber-sisters in person. Ditto Skype. Ditto cellphone calls. But in the end, it comes down to the individuals themselves. And I feel very blessed overall by getting to know so many smart, eloquent, funny, kind-hearted, wise people in Cancertown. Like you. I had some great real-world friends when I was diagnosed. Some have stayed the course, some haven’t. But I doubt I’d be sane without the friends I’ve made in the breast cancer cyber-verse. xoxo, Kathi

  17. dglassme says:

    Scorchy, once again you have managed to put something into words so eloquently and precisely on target. Your skill to not only observe but, to then put it in precise words is astounding. Taking what you see and hear and oh so smoothly putting it into emotional text with occasional brown egghead surprise humor to keep your readers engaged is flat out amazing . Forget about Fb write your damn book.

    I’ve been meaning to tell you how many things I’ve learned from you in our short journey together, whether you believe your words have impact or not: I’ve read more in seven months than I’ve read in a lifetime, your blog has led me to many other helpful places and it has to do with the relevance of the material not just something else to read as though you lite a match and it caught on fire from there; Tweeter never used it, never cared to but, you made me curious as to what it was (at the time thought it would be too complicated ) which has led me to a diverse advocacy group from which I’ve learned a multitude of things needing to keep your records, getting survivor care plan to relating to death, seeing people engage at a very different level not pink or war stolen terms; made me further want to write my thoughts down more because I’m aspiring to emulate you (reading, grammar and spelling my three biggest weaknesses nonetheless I want to write).

    What I’m really trying to say is I found a tremendous friend in you, even though you probably never realized you’ve impacted me. I look forward to your newly released blogs as I’m sure others do too. Throwing stages aside, I believe many have learned to love you. dd

  18. I know a little about what you mean at least in respect to the acute treatment vs. the long drawn out phase. For me there was an adrenaline high during the acute stage with lots of folks checking in on me socially and medically. Although I have not become a stranger to the cancer clinic, there has been a lull between procedures, waiting to get my TRAM surgery done, which is going to kick my ass. I find that it is harder to write my blog entries and also harder to keep myself motivated to keep my health practices like daily walking and meditation, though I am still doing these things.

    And you are a survivor, Scorchy, literally and figuratively!

  19. I’m a stage 2 girl with new “boobs,” NED, and 2 years out from all the madness, and even though I’ve “been there” and know what it’s like to hear those infamous words of “You have cancer,” I can’t begin to understand the plight of stage 4 girls. I do, however, get the feeling of being a red flag, and some of my friends have skedaddled bc the thought of someone like them being diagnosed makes them flee. Good riddance.

    • Scorchy says:

      Yeah, I think all of us get it to be sure. That alienation must have struck women with stage i breast cancer as much as women with advanced disease. That cancer existence is the one thread that binds us together. It’s the devil in the details where we begin to move in different directions.

      And when you talk about this kind of thing it’s easy to sound like it’s one big pity party when it’s not at all. That’s something I think all of us who share this diagnosis–at any stag–“get” more than anyone else.

  20. Do you think it’s possible to find a compromise between the 2012 Sisters and the Stage IV support groups – in that people allow themselves to become invested in one another? What would that forum/discussion group look like I wonder? Or do you think we’re already seeing it with #bcsm?

    I’m quite curious to hear your opinion since FCT has forums where people interact, and if there was a way to make it better I’d love to hear your thoughts.

    Catherine

    • Scorchy says:

      I’m not sure you can. When dealing with what I’ll call acute beast cancer there is a lot of activity and a very broad level of predictability: chemotherapy, surgeries, etc. There is a lot of sharing that happens with an eye toward a positive end. With advanced disease things move slower, there is less drama (I don’t say that to minimize but to reflect a level of activity), and much less predictability. In my opinion, the former lends itself to a discussion board, the latter does not. I think it’s easier to invest part of yourself to a discussion board when you know there is an end and you’ll move on. With advanced disease that amount of investment is going to weighed with other priorities. Granted, this is just my feeling–nothing empirical to support me.

      • Catherine says:

        Thanks for your answer, Scorchy. It gives much food for thought, and I think I can understand the difference in pace/predictability. Maybe blogging is a better outlet, like you have been doing here and so many other ladies do as well. Hmm. Thanks again. ~Catherine (the KALE eater)

      • Scorchy says:

        ACK! You’re the KALE EATER! hahaha I’ll be tweeting that forever. It cracks me up. Someday, when I am duct taped to a chair and have no choice, I’ll eat the kale chip. 🙂

  21. gregsmithmd says:

    Although I do not have cancer myself, I have had (and still do have) family members and very close friends who do. I come to understand how and what they feel through writing like yours. I appreciate your taking the effort to bring the “rest of us” into your circle in just this little way. It makes a big difference. Thank you.

    Greg

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