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Im not on a "journey" and Im not a "warrior." Who is with me?

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  • iamloved
    iamloved Member Posts: 197
    edited January 2021
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    Love reading all the comments. We need a like button so I could hit like on about 99% of these comments. I hate the pink ribbon, October as breast csncer month and the stores filled with merchandise that only lines corporation's pockets. Very little goes to research. I have at times said journey but now I look at cancer as a bad poker hand. Just got to play the odds and hope for the best! Some one gave me some pink ribbon stuff and it sits in a box. It is like people think we need cheerleaders. Anyway love this thread. Pink stinks!

  • minustwo
    minustwo Member Posts: 13,129
    edited January 2021
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    Sorry Iamloved - I do NOT want a like button. I appreciate that BCO is not Facebook. Slower paced, time to read and time to respond with words if something strikes a responsive chord.

  • ninetwelve
    ninetwelve Member Posts: 328
    edited January 2021
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    I agree, MinusTwo. The Like button is too easy. A typed reply is not so hard. Interactions with others require effort.

    I find myself using some of the cliches at times. I guess because I don't know how to just say, "I'm so sorry you're going through this." But I have never heard anyone say "I kicked cancer's ass because I'm such a warrior," or any such. If you've been through any kind of diagnosis and treatment, you know it's not war. It's just life in a body that will fail eventually, no matter what I do or don't do.

  • alicebastable
    alicebastable Member Posts: 1,945
    edited January 2021
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    NineTwelve

    I've known one woman who said things like "I'm a warrior who beat cancer and I'm a survivor!" And she said it frequently. As in, it came up in every conversation for years. It became almost a second profession for her, decked in pink from head to toe and jangling with pink jewelry. It was strange, her cancer was completely removed with the biopsy and her doctor told her she was fine, but she INSISTED on chemo and got it. She'd been wearing wigs for years before, but started telling everyone that it was due to her cancer, and wore a compression sleeve every day although she hadn't had any nodes affected or removed. She loves seeing herself as the ever-cheerful survivor with a great big S.


  • moth
    moth Member Posts: 3,293
    edited January 2021
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    oh wow Alice, that's really something!

    Ninetwelve, I see it in social media profiles/bios..

    I think there's a certain popular subculture of what I call 'warriorship' in all realms - professional development, self-improvement, fitness, religion....everything is viewed as a battle, you have "to want it" you have to hustle, blah, blah...and if you succeed in any way, it's a victory over some enemy forces. It naturally spills into disease and cancer. It's a way of framing life and adversity, with a specific emphasis on personal responsibility (I beat cancer!) that once you start seeing it, you can't unsee.

  • traveltext
    traveltext Member Posts: 1,053
    edited January 2021
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  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2021
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    Thank you, Traveltext.

    "It implies 'winners' and 'losers,' and I can tell you right now: No one who ever died of cancer, lost."

    I wholeheartedly agree with that sentiment.

  • Poppy_90
    Poppy_90 Member Posts: 84
    edited January 2021
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    Travel text, thanks so much for posting that. I don’t know if you saw this as well, but thought it was worth sharing. The doctor speaking also worked on a paper critiquing the use of war metaphors—not that we all don't know this, but a good reminder on how words matter. It’s a quick read, and I thought well worth the time.

    https://ascopubs.org/doi/full/10.1200/OP.20.00542


  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited January 2021
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    Traveltext and Poppy, thank you for those links.

    moth, reading your post made me think about people who believe that they are the center of the world. Often they think they have a lot more influence on events than they really do. I've never seen the world that way; I've always joked that as the youngest sibling with two older brothers, I've known since birth (well, the day I was brought home from hospital) that life is not fair and there is a lot that happens to me that I can't control.

    §#!+ happens. To me, it's that simple. We get to control how we react, but sometimes the best we can do is take one step at a time to trudge through it.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited January 2021
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    Good article.

  • alicebastable
    alicebastable Member Posts: 1,945
    edited January 2021
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    Both links are so refreshing. Moth, I think you nailed it with the comparison to work - it's like an exaggerated version of the "Protestant work ethic" that teaches us that we can't have nice things without suffering for them first. I've never understood that mindset.

  • threetree
    threetree Member Posts: 1,382
    edited February 2021
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    Just want to say that this is a great thread and I relate to just about everything I've read here. I have some thoughts of my own, but am just too wiped out from letrozole side effects right now to really pull all my thoughts together and post. I'm going to check back here frequently, though, and I hope this keeps going. I'm no "warriror", "survivor", or "battler" either, and I detest the pink stuff and the "winning" some kind of race analogies. A lot of the medical profession people don't seem to like it if you're not into that stuff. When I openly poo-pooed some of this attitude while I was getting radiation, they started asking me regularly if I didn't want to see the mental health counselor. No thanks; just want to call a spade a spade.

  • alicebastable
    alicebastable Member Posts: 1,945
    edited February 2021
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    ThreeTree, that's nuts! So if you don't buy into the "I'm a brave victim" BS, they think you need counseling? Yikes!

  • beaverntx
    beaverntx Member Posts: 2,962
    edited February 2021
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    Well, I can call myself a survivor now but not from cancer but from surviving the Texas Valentine's week power and water outages! Terminology all depends on what one is talking about...

  • threetree
    threetree Member Posts: 1,382
    edited March 2021
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    Alice B - When I finished my chemo (about June 2019), one of the oncology nurses, along with a woman from the Cancer Society who would come around with a cart of snacks, told me, "You're a survivor now!" I told them I could hardly be a "survivor" because if nothing else, the tumor was still in my body (it was neo adjuvant chemo for a 5cm tumor). I told them I'd feel like I "survived" cancer if and when I get into my 90's and die from heart failure like my dad did. It seemed to really burst their bubble. They didn't understand why I hadn't planned to go out and party with friends/family to celebrate the end of chemo and being a "survivor" now.

    I do know that it really matters to and helps some to look at things that way and I do respect their need and choice, but I'm sorry, for me, I just don't get it!

    Beav in TX - That's great - that's more of my idea of what a "survivor" is too.


  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2021
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    Early on, i recall, on a number of occasions, I was asked if I wanted to join a support group. Again and again I said, “No." After saying, “No," for the umpteenth time, I said,"I feel okay and would appreciate it if you all stopped asking me to join.” And then, the woman said, “Well, if you feel okay, then maybe you can join the support group and be supportive to the others." And with that, I paused a moment, thought about it for a second and politely said, “No"....again.



  • mountainmia
    mountainmia Member Posts: 857
    edited March 2021
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    voraciousreader, there are moments when I feel very capable of supporting others going through this process. But mostly I don't want to do that. I'm sure I would have said "no" too.

  • MsMurphy
    MsMurphy Member Posts: 32
    edited March 2021
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    Does anyone get tired of being told how "strong" they are? I started hearing this when I was coping with my mom's alcoholism and subsequent death from it. Now that I'm dealing with BC, I'm again hearing it adnauseum. Do I actually have a choice in whether or not I am? I feel like being told I'm strong puts such an extra pressure on me to have to always put forth this image that I'm feeling great despite the surgeries, chemo, hair loss, frankenboobs and everything else we deal with. While most days I am okay since it is my nature to be happy and optimistic, there are days that I do feel down and want to have a pity party for myself. I guess it ties into that cliche that we are warriors and survivors on this breast cancer journey. Being strong can go to hell, I just want the energy to clean my house.

  • mountainlover
    mountainlover Member Posts: 59
    edited March 2021
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    MsMurphy,

    I agree, I've heard it often and always felt uneasy.. I think people mean it as a compliment. Most of my acquaintances and family have stopped saying it as I would regularly reply - well, it's not like I have many choices (I just try and do my best).

    I have also often referred to my getting professional help to cope - physiotherapy, psychotherapy, hypnosis. I have given myself the objective of trying to educate people on the reality of breast cancer (that is, when I have the strength to do that , which is not all the time). This disease sucks and people should know and not normalise / minimise the struggles that it entails. Ah, like many here I can't stand all the pink narrative. And I sure am no warrior. Like some have said on these boards "I just turn up " to appointments. And that's more than enough

  • harley07
    harley07 Member Posts: 292
    edited March 2021
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    I hear ya!

    I am neutral on all the pink stuff - I dont care one way or another. While some family and friends have been caring and concerned I've also gotten alot of "you look so healthy, do you really have BC?". I didn't need chemo for which I'm very grateful and therefore, didn't lose my hair. So I don't look like what people picture the stereotypical cancer patient to look like

    What had ticked me off is one SIL who told me yeah it's inconvenient to have breast cancer but it's no big deal. Then told me she had a few cancerous cells removed from her breast decades ago. She later corrected that and said she had an excision biopsy and it was benign

    Each of my brothers have told me to get over it as surgery removed the cancer and it's gone. Since our mom lived for 27 years after her BC diagnosis they figure I will too. (I hope so!)

    Grrrr.....

  • sunshine99
    sunshine99 Member Posts: 2,638
    edited March 2021
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    Harley, I hear you, too! While I don't want someone going hysterical on me, I also don't want someone just blowing it off. When I was diagnosed the first time, I told a few people who were at our house for a Bible study. One woman (a nurse, of all things) shrugged and said, "It's no big deal." I didn't say it, but I thought, "Well, it's kind of a big deal to me!"

    Now, I think some people look at me and wonder "how long does she have?" Can't answer that one. Just because I don't curl up into a little ball, doesn't mean I'm not afraid some of the time. The word "brave" suggests I have a choice. Jumping out of an airplane would be brave. I could choose to jump or not to jump. I'd love to choose NOT to have cancer, but it's not my choice.

    AND, for crying out loud, you were diagnosed less than four months ago. Your scars are still fresh and every day you take that little pill, you're reminded of cancer. I hope you get many more years, too.

    Glad you're here with us. We get it!

    Carol

  • melissadallas
    melissadallas Member Posts: 929
    edited March 2021
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    It is so much easier to say “You're so strong." Since you are so strong it means they don't need to put themselves out to do anything practical to help, since strong people must already have it all handled, right?

  • harley07
    harley07 Member Posts: 292
    edited March 2021
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    @Sunshine thank you so much for your comments. They made me feel better. Yeah, sometimes I wonder what people are thinking when they make comments. I do wonder about the nurses comment to you. She should have known better. Although sometimes I think people don't know what to say (and I've been guilty of that too)

    On a positive note, my husband had been great and very supportive

  • minustwo
    minustwo Member Posts: 13,129
    edited March 2021
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    Mountainlover - I really like your response: well, it's not like I have many choices

    VR - I agree about support groups. Not for me.

    I agree with Beaver - we survived the "great freeze" and I'll use my spare time volunteering at food distribution centers for people whose homes were trashed by broken pipes and have no way to cook & no where to go.

  • threetree
    threetree Member Posts: 1,382
    edited March 2021
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    Harley - I agree totally about those who brush it off with and seem to think it's no big deal. Even my close friend who has been a huge help to me through all of this (rides to surgery, ER, etc) seems to have had some idea that once the tumor was removed and I was finished with the treatment, that I was OK and shouldn't worry so much. I don't think she realized how those cancer cells are still floating around in our bodies and how devastating treatment side effects can be - some of them are permanent. She totally means well and wants to be as big of a help as she can be, but I realize the general public (and I include myself in this before cancer) just have no idea how bad this stuff can be, and how actually "minimally effective" most treatments actually are. The seem to think chemo will kills the cancer and that's that.

    I also remember back during my child rearing years (not cancer related) if you had a particularly difficult situation at any given point, e.g. having to take your kids to the ER, a house full of sick people that you had to take care of all by yourself, etc., people would use that "brave", "strong," "courageous," "I just don't know how you do it!" stuff on you, and I know many including myself who had that, "I just do what I have to do" attitude about it all; no thoughts of bravery or strength. I think it's the same with the cancer - we're all just doing what we have to do and not everybody gets it. Like Sunshine 99 says, it's not like you have a choice.

    Melissa Dallas - I totally agree that when people say that stuff like "you're strong" or "well, you look fine!" they are trying to distance themselves from really having to feel compassion or help in some way. I suppose we are all guilty of some of these same things ourselves at times though, and I think it is based on fear. Knowing just how truly bad someone is doing and then thinking that it could happen to you to, and that it is maybe only a "there but for fortune" situation that it isn't happening to you, can be a bad place to have to go mentally.

    And hey - Go all you Texas storm survivors!


  • runor
    runor Member Posts: 1,613
    edited March 2021
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    How could I have not found this thread until today?!  You are my tribe and are singing the song of my people.

    I bristle at Pointless Positivity. That whole 'focus on the good' thing. While I agree that it has value and merit, it's often used as a blanket denial device that covers all realities. 

    As I get further out from my diagnosis, weird things are happening. Like, in my head I am two different people. The immediate panic and terror have faded. I can get up now and cancer is thankfully not the first thing on my mind (coffee is!). But then some statistical fly will swoop into my head and remind me that with my type of cancer recurrence risk rises over time so any hopeful feelings I have are just setting me up for a big  kick in the kooch in the not to distant future. So while I do not think about it all the time, I think it's prudent to live braced for it. And that's like being two different people at once. One of them venturing into life while at the same time remaining huddled and wary. This is not explained by survivor, warrior or brave. This is more like PTSD. Living, but expecting bombs to drop at any moment.  (Edited to add: it just occurred to me that cancer is like a brake stand. One foot on the gas pedal, the other foot on the brake, blue smoke belching off the spinning tires, what's going to give first, the brakes or the motor? Either way some car part is going to go kablooey. I am the car wondering what's going to blow first.) 

    I found another split when cancer hurled me into the group ' those who get it' and hurled me away from the people around me who don't get it. It has alienated me, again in my own head, from those who are closest to me. For example, every December I hang a new calendar on the wall and since 2017 have mused in my head, huh, wonder if I'll be alive when this calendar is done. My husband does not have these thoughts. To him hanging a calendar does not carry an existential kick to the gnads. For me it does. That is new. Cancer new. I frickin hate it.  I look at my daughter and marvel that she is 28 years old. Nearing 30. I can't imagine her 30 years old! Then I wonder, will I be alive when she turns 30?  Before cancer these reality based possibilities were NOT on my radar. Now they float through like the Goodyear Blimp. They are big, they obscure the view and I live alongside people who have no clue what I'm seeing. How can they? Before cancer I could never have imagined how it was. I am now part of that club. When you meet someone else diagnosed with cancer and you  look at them and just nod,  your eyes meet and you both know that you know. You know that thing that you never used to know, never used to think about, you both know that you have taken some un-nameable step away from those closest to you and closer to.....The End.  I used to be a person who lived with no clue there was an End. Now I know. I can't unknow it. Other cancer people have also been handed that memo, been smashed over the head with that memo. Can't forget that memo. And while reading the memo there is someone just off to the side cheering and chanting about warrior, fighter, brave, survivor. Shut up...I'm trying to read. 

    Cancer did not make me better. I am still a bitter bitch. A bitter bitch with a dose of sorrow that I never had before. Truth that I was blind to before. The knowing that humans are both tough as nails and fragile as glass and have little choice about which way it goes.  Crazy making. Love this thread!

  • moth
    moth Member Posts: 3,293
    edited March 2021
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    I'm having a day when I do want to recognize that we are strong. Maybe it's cause women's history month & maybe it's cause I'm on massive steroids... & it's also partly though because I've heard recently of several women who ignored symptoms, hid their head in the sand, didn't tell a doctor, didn't tell their family, didn't tell their partners till Monday that they were going for a biopsy on frigging Wednesday...and they're likely metastasized all over by now given the symptoms....& I think their next step is literally hospice... and I think you know what? GIVE OURSELVES SOME CREDIT. We get up, we make choices. Not everyone chooses to show up, brave or otherwise. Some check out or just freeze or choose to not act. So yeah, maybe we can pat ourselves on the back just a bit?


  • ctmbsikia
    ctmbsikia Member Posts: 756
    edited March 2021
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    Sitting here reading and have this animated picture going on of getting knocked over the head with a memo while people are standing to the side trying to understand me. I also have a big blimp that is both in my head and heavy on my heart. Thanks runor, you made me smile with your eloquent writing skills. I hear you too.

    moth, you have shown up everyday! You are so helpful to others as well. Whatever happens, YOU should know that you have made a difference and deserve a huge pat on the back!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited March 2021
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    runor, you "bristle at Pointless Positivity"? Really? I'd never have guessed! Winking

    I can identify with what you've written. The only thing I will add is that it's not just cancer that hurls you into the group of 'those who get it' and away from the people who don't get it. There are other diseases that do that, and other life events. I moved into that group years before I was diagnosed with breast cancer with a kick that was a lot harder than my breast cancer diagnosis. Most people keep this change in life perspective to themselves unless they know that someone has had a similar experience. For the most part we know on which side family members and most friends land, but we don't know for acquaintances or colleagues or strangers. There are more people in the "those who get it" group than you'd think.

    I admit however that when I know that someone is in the "don't get it" group, I think how lucky they are to have not experienced something that has forever changed their outlook on life, adding the realization about how quickly life can change or even end. But when I read a post from someone who is terrified about a callback or a biopsy, saying that it's the worst thing that's ever happened in her life, while I do think how lucky this person is, I also remind myself that "the worst thing that someone has ever experienced is the worst thing that they've ever experienced" (as someone very wise once wrote on this site). I know that I can't apply my experience to their situation, and for them, it really is that awful.

    moth, that is an interesting perspective to add to this discussion. It's sad to think that there are people who hide their heads in the sand until it's too late. I suppose the choice all of us have made to get the tests, ask the questions, take one step at a time and move forward one day at a time shouldn't be taken for granted. That's a good reminder. And I'll second ctmbsikia's comment. You do so much more than just show up. BCO is very lucky to have you!

  • threetree
    threetree Member Posts: 1,382
    edited March 2021
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    Runor - Funny, I only found this thread yesterday and I immediately connected with it too - great post of yours!

    Also, I second everything Moth and Beesie have said. I was one who buried my head in the sand, tried to run away from the evidence, tried to hide from reality. That's just how I am with things (did the same thing years ago with signs that a divorce was on the horizon). That's part of why I don't feel brave or courageous or whatever. I had to talk myself into seeing a dr. over the course of several months. The first dr I saw told me she thought it was breast cancer, and I thought it couldn't be true and that she really hadn't grasped my story I'd told her about having had a benign fibroadenoma in that exact same spot decades earlier ( I was hoping it was some late aberration of the old fibroadenoma). I continued to run and hide until I finally did muster up some courage and tell myself that it just might be cancer, and got myself to another dr. That time I totally accepted the diagnosis and thank goodness it hadn't really spread everywhere. It was stage 3 (2019), confined to the breast area, and so far, so good; no further spread, but I am like runor mentioned, ever bogged down with the idea that it can/might return at any time.

    I've always been amazed at the people on here who at the first slightest sign of anything have rushed to the doctor and then when they get the bad news they can't get treatment fast enough. It's such a polar opposite from me and my brain.

    I do think that no one can really know about all of this unless they've experienced it, but we can't all "walk that mile" in everyone else's shoes, even if we'd like to on their behalf. I think people mean well with all that "survivor" and "bravery" stuff, and it does really seem to help some for sure, but I think none of us can really appreciate what someone else might be going through. Maybe we aren't supposed to, because if we did, we'd be so overcome with things like compassion, grief, and sympathy for others that we wouldn't be able to be good at much else.