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

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  • b00kworm
    b00kworm Member Posts: 6
    edited March 2021
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    Have never liked the "survivor" label and really don't like "journey", either. The journey metaphor glosses over the reality too much and makes it sound like I'm taking a vacation. Yeah.......no.

    I haven't found words that suit me, but I will keep thinking about it and once I have some other options, I will share them with my family, friends and coworkers, and INSIST that they adopt them, at least when they are talking to me about my situation.

    It seems that people who have not had a cancer diagnosis really need to believe that we have much more control over this disease than we actually do. In my experience, it makes the people around me very uncomfortable to think about how this disease can do what it wants, when it wants, in spite of me doing everything "right."

    In today's world, every aspect of a person's life must be "managed" and to suggest that it is not necessarily possible to do this with cancer (yet?) is too unnerving.

  • moth
    moth Member Posts: 3,293
    edited March 2021
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    On Twitter recently someone suggested "forced march" instead of journey and that sounded way more accurate

  • b00kworm
    b00kworm Member Posts: 6
    edited March 2021
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    Agreed! Still sounds too military for my liking, but it certainly drives home the point that we are all unwilling participants. This is no pleasant drive out in the countryside.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2021
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    Minefield.

    I don't go for the military metaphors, but in this case I am thinking not about soldiers, but civilians innocently walking in an area of hidden mines. Without denying the seriousness of actual land mines, I am struck by how familiar this sounds:

    "A land mine is an explosive device concealed under or on the ground and designed to destroy or disable enemy targets...as they pass over or near it. Such a device is typically detonated automatically by way of pressure when a target steps on it or drives over it, although other detonation mechanisms are also sometimes used. A land mine may cause damage by direct blast effect, by fragments that are thrown by the blast, or by both....The use of land mines is controversial because of their potential as indiscriminate weapons. They can remain dangerous many years after a conflict has ended....and [thousands of] people are killed every year while countless more are maimed." (Wikipedia)

    Right? We never know when we will step on one and how bad it will be. When someone offers me the journey lingo, I tell them it is more like a minefield.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited March 2021
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    Bookworm, I believe your analysis is correct. If people can find a reason it happened to us, they can feel safe knowing they do not do that, eat that, etc.

  • sf-cakes
    sf-cakes Member Posts: 544
    edited March 2021
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    Thank you Mochipie for this thread! So many people have called me a warrior, or a princess warrior (?!?), and have offered what I call aggressive positivity. I have two friends whom I can say something like, "I'm worried about x treatment coming up", and they will ask if I want to talk about what I'm worried about. Everyone else just tells me I'm going to be fine and I'm going to kick cancer's ass because apparently I'm a warrior.

    A good friend sent me this candle, and I love it!

    image

  • alicebastable
    alicebastable Member Posts: 1,945
    edited March 2021
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    Ooh, I love that candle!

  • mochipie
    mochipie Member Posts: 45
    edited March 2021
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    SF-Cakes, that candle is amazing.

    I bristle every time someone tells me how badass I am or how I'm kicking cancer's ass, or how I'm so strong. I think many people don't really know what to say, and they think they are saying things that keep me motivated. I know that I was probably guilty of these platitudes before my own diagnosis as well.

    "You've got this" is especially grating. It means nothing other than a vote of confidence that I have the chops to sit in an infusion chair or lie on a table. I react to some of these as people subconsciously reminding themselves that this is someone else's daily burden and they're never going to be able to relieve it for others. May as well say "Sucks to be you" or "You're on your own."

    I remember my step mother-in-law was dealing with terminal colon cancer and was bitching one day about everyone telling her how good she looked. She was yelling, "What does that even mean? I am not doing well at all. I don't care that I look good." I didn't know what to say to that, and I didn't understand why she would find that offensive. It's really hard to sit here and receive these stupid platitudes and remember that normal people have no clue what it is like to receive that positive biopsy or test result.

    I was a noob when I started this thread, so I tread lightly in case I was stepping on a lot of toes here, but it's obvious that many of us feel the same way. I'm finding that even reading posts on this site without interacting to them helps me more than talking to non-cancer patients does. They just don't get it, and they won't get it unless they also find themselves in our shoes.

    I will say I'm focused on my disease, prognosis, and treatment plan; I'm compliant with what's been asked of me; I show up for every appointment; I take a lot of notes so that I can ask the right questions and remember everything; etc. I'm a bit partial to calling myself a breast cancer patient, but I won't always be that.

    Cheeky alternative suggestions to Warrior may be:

    • Participant
    • Hostage
    • Recipient
    • Contestant


    And for fun, Journey alternatives:

    • Nightmare
    • Megabus Ride
    • Ordeal
    • Misadventure
    • A Three-Hour Tour
  • traveltext
    traveltext Member Posts: 1,053
    edited March 2021
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    MochiPie, love these:
    Cheeky alternative suggestions to Warrior may be: Participant, Hostage, Recipient, Contestant, Recipient. Journey alternatives: Nightmare, Megabus Ride, Ordeal, Misadventure, A Three-Hour Tour,

    I'd add:

    Warrior: Captive, Battler, Conscript, Coward, Weakling
    Journey: Odyssey, Expedition, Trip, Ride, Voyage, Trek

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited March 2021
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    MochiPie,

    "Hostage" - that's the best one yet. I'm not a warrior; I've been taken hostage.

    SF-Cakes, as for "princess warrior", well that certainly describes all of us - oh sorry, Traveltext, not you! I googled it to see what images came up. Many of Zena the Warrior Princess, a drawing of a naked well-endowed woman with a pink aura surrounding her riding a dragon, and this one, which I think is just perfect to represent all of us, particularly with the pink in the background:

    image

    And yes, I am being sarcastic.

  • mochipie
    mochipie Member Posts: 45
    edited March 2021
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    Traveltext - I had been struggling to figure out why I felt such an emotional response as my final chemo was nearly finished. I equated it to feeling like a hostage about to be freed from her captor. Chemo was a lot harder and more stressful than I admitted to myself at the time.

  • piperkay
    piperkay Member Posts: 132
    edited March 2021
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    Just found this thread, and I'm glad I did! I haven't read all the posts yet, but I definitely will. As for the topic of learning or changing as a result of "cancer life," I do want to say that after +2 years of this *shitshow* under my belt, I find that I can come up with something to say in a greeting card a little easier than I ever did before. Does that count?

  • lw422
    lw422 Member Posts: 1,403
    edited March 2021
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    I think instead of "warrior," I'll just go with "Tragic Figure". As for my journey, I like the "hostage" designation. I can only hope my days in treatment will be sufficient ransom to get me out of this nightmare.

    I would never assume to instruct anyone on how to address me or how to frame their comments; I know people struggle with what to say, and most of them mean well. It does grate when I see my steroid-swollen face, bald head, and bruised-up body in the mirror and hear how good I look. What the hell; I must have been a damn movie star a month ago.

  • threetree
    threetree Member Posts: 1,379
    edited March 2021
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    Just want to say I really like Moth's "forced march" and Shetland Pony's "hidden mines" analogies. They are much more spot on than "journey" and "warrior". Still loving this thread and finding it much more helpful in many ways than the others. It's the mental health aspect.

    (The picture above looks like "She-Rah, Warrior Princess", a cartoon character that my oldest daughter just loved when she was a toddler/preschooler back in the 1980's.)

  • alicebastable
    alicebastable Member Posts: 1,945
    edited March 2021
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    It's kind of ironic that the phrase "active treatment" is used on cancer patients for surgery, radiation, and/or chemo, but what the patients do is endure, which is rather passive.

    Since I've been given a variety pack, I think I should start calling myself a student of cancer.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited March 2021
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    ahhhh.... a “$h1tshow." That seems to work....a $h1tshow where I am an actor and no one has given me the screenplay and I don't know how it is going to end. That's it! I got it! That's what I am on. Can someone hand me an Oscar please...

  • sunshine99
    sunshine99 Member Posts: 2,637
    edited March 2021
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    Just chiming in (again) to say AMEN and HEAR, HEAR to the latest comments. It's so validating. So when my well-meaning friends say "stupid" things, I will remember that, for the most part, they aren't being thoughtless or cruel - they just don't know!

    I'll come here to vent when I need to.

    Carol

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited March 2021
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    it's a dumpster fire of a journey! Runor - I get tripped up anytime I have to type in a credit card expiration. 01/24 will I be here? Will cancer come back? It's a real kick in the head

    If there has to be a breast cancer awareness month the awareness should be on how too many people die from BC

    Also I could get behind awareness that helped everyone understand chemo is not like it is portrayed on TV

  • rah2464
    rah2464 Member Posts: 1,192
    edited March 2021
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    Runor once again thank you for your eloquence! You are spot on!

    Moth I am with you forced march seems very appropriate.

  • serendipity09
    serendipity09 Member Posts: 769
    edited March 2021
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    Just finding this thread. I by no means am a survivor or warrior, nor do I consider this a journey.

    ShetlanPon hit it right on the nail for me. My father, at the age of 21 in Vietnam, was ambushed and stepped on a land mine and lost his legs. He never let it stop him from doing anything. I thank God daily that he is still here...he is a survivor! The physical and emotional assault my body has, and is still enduring, is nothing compared to what he, and so many others have had to go through and sacrifice.

    I have a friend who was diagnosed with BC, had a BMX and was able to to have implants placed immediately vs.TE's; was lucky enough to to not have to go through any treatment so she didn't have to feel the SE's of chemo, she didn't lose her hair, she didn't have the residual SE's etc,. I'm truly happy she didn't experience any of it. She calls herself a survivor, and if that is how she feels, wonderful. But she is constantly throwing that word at me. I don't want to tell her my feelings about the word because I don't want her to think I'm downplaying her BC diagnosis, I just don't feel the word applies to me.

    For me, hostage seems about right because we certainly did not ask for this and had no choice as to whether or not we were diagnosed with BC.


  • ceanna
    ceanna Member Posts: 3,120
    edited March 2021
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    This is such an interesting discussion. I have long thought that there needs to be more appropriate words for the ups and downs of life. I think, in a way, that our view of our diagnosis and treatment depend on how we look at life. If we think life is linear, and moves in a straight line toward bigger and better things, we could be more frightened, disoriented, and experience many other emotions with a BC diagnosis. Years ago, in some random college course, I heard about the "wagon wheel theory" of history, and it stuck with me. Picture yourself on a spot on the outer ends of the spokes of a wheel or on the rim. As the wagon (life) moves forward, you will sometimes be moving forward, sometimes moving backward because of the motion of the wheel, but always going a distance. When the wagon wheel rotates, you might think you are having setbacks, but then you get to the top of the rotation and you begin to again move forward. Like a clock's hands, sometimes they are moving from right and down, and sometimes they move left and up! Just keep moving!!

  • moth
    moth Member Posts: 3,293
    edited March 2021
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    Ivy, I think I'd have a hard time not yelling at your friend. I really bristle at survivor though, it's one of the words almost guaranteed to set me off now & I will almost inevitably snap back "you're not a survivor until you're good and dead of something else. This stupid thing can come back any time & it can happen to any of us"

    It's like saying you survived a shark attack, but you're not on the beach yet, you're still in the water and the sharks are still circling. Sure that one shark went away, but the rest are there & you just don't know.

    ceanna - yeah but we're all on the wheels of a hearse.... sorry, morbid! And some of our hearses are gearing up :/

  • melissadallas
    melissadallas Member Posts: 929
    edited March 2021
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    The worst offenders here are the twenty year olds with literally a zit on their breast or similar who lead off with “I am at the beginning of my “journey.” Such self-important cheesy BS. Get over yourself. I picture them lying on their fainting couches with a box of bon bons. God forbid anyone should educate themselves to the level of high school science. I am just appalled at how ignorant people are of very basic everyday anatomy and physiology and run of the mill stuff. How can anyone with a computer not know this stuff?

  • alicebastable
    alicebastable Member Posts: 1,945
    edited March 2021
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    MelissaDallas, I just found this Neil deGrasse Tyson statement today and I plan to use it a LOT on those drama princesses: "Not knowing what it is, does not count as evidence for knowing what it is." It drives me CRAZY when someone has gotten the all-clear on every test and scan, but still insists the doctors have missed something because they just have a FEEEEELING. Sometimes I think they actually WANT to have cancer so they can play brave little warrior survivor for attention.

  • minustwo
    minustwo Member Posts: 13,128
    edited March 2021
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    Moth - LOVE the shark attack picture. And morbid is OK sometimes since it's REAL.

    Melissa & Alice - YAY for all your answers to all those princesses. As you know, sometimes I can't help myself from a snarky response. Thanks for hanging in there.

    Oh yes, and an Oskar for VR... (spelling intentional)

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited March 2021
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    Melissa, Alice and MinusTwo, I'm with you all the way! But when I'm itching to write that pointed or snarky reply, I 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) and I rein myself in. Or I just step away. Okay, it doesn't always work but I try.

    And then I think to myself how blessed someone is to have never experienced anything worse than a zit on her breast!

  • minustwo
    minustwo Member Posts: 13,128
    edited March 2021
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    Beesie - and I'm always grateful for your detailed knowledge and your voice of moderation.

  • runor
    runor Member Posts: 1,613
    edited March 2021
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    Loving this thread! If I had a zit on my breast I'd have to pick it up and look underneath to find it since everything has a serious downward slope these days. I found a cookie once doing that. 

    I just can't spit the word 'survivor' or 'victim'  and find myself sputtering out the inelegant Cancer Person. The plural would be Cancer People. It's kind of clunky.

    Today I thought up Crash Test Dummy. This is a term used by daughter when she has been working with a horse, usually an attempt at rehabilitating a rodeo bucking bronc, and now it's tame enough to respond on a line, but she needs to get someone up on its back. To see what will happen. She's not getting up there. She's not stupid. She knows this horse has bucked for a living and is light years from being an English show pony. So she scans the folks that hang around stables and usually some swaggering testosterone laden individual shows up and he is chosen as the sacrificial lamb, AKA The Crash Test Dummy.  The horse is saddled (with caution), head yanked around so his nose touches his shoulder, volunteer idiot mounts said horse with no idea whatsoever how badly this is going to go, and daughter runs for her life as Crash Test Dummy gets his teeth smashed around, his neck dislocated, makes an attempt at being an albatross before crashing face first into the dirt. Horse bucking off into the distance.

    I did not step into this cancer ride voluntarily. I was rolling down the road when my car left the lane and I became a crash test dummy. Or when my pack horse went rogue and deicded to bronc out on me. Crash Test Dummy. Don't know how this will end, all I know is shit went way off the rails.

  • melbo
    melbo Member Posts: 266
    edited March 2021
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    I refer to mine as a bad trip to cancer land. Usually while thinking about acid trips rather than car trips, although either metaphr would work.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited March 2021
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    Thoughts from the middle of the night on why use of the term "breast cancer survivor" bothers me so much.

    In life, there are many things that people survive. Some are truly life threatening situations while others are situations that have the immediate potential to become life threatening. People survive heart attacks and strokes. People survive being shot. People survive situations that physically or emotionally make them want to cry "Enough! I give up!". People survive natural disasters.

    Someone in my extended family had emergency heart surgery. Without doubt, the risk to her life for a period of time was greater than any risk I have faced to-date from breast cancer. While of course any early stage breast cancer diagnosis can become life threatening, that is a future possibility, not something we face as we go through treatment. Unless something goes very wrong during our treatment, our lives are not at risk. And is the future risk of someone with a heart condition all that different from the future risk of someone with a favorable breast cancer?

    In all the situations I referenced, people truly have survived something that could have immediately killed them. They are survivors. They may say "I survived a heart attack." Or "I survived the 2004 tsumani." Or "I survived an abusive relationship." But how many of those people latch on to the word "survivor" and use it as part of their identity for years to come, or sometimes for the rest of their lives? Even within the cancer community, where the term "survivor" is more prevalent, it seems to be used more for breast cancer than any other cancer. Is it because breast cancer is primarily a woman's disease, and women are considered weak? Ah, the poor thing had to deal with a diagnosis and surgery, and OMG, she survived it!! She's a survivor! Or has it become a sorority thing, as in "We're all breast cancer survivors!" WooHoo, bring out the pink pompoms and boas.

    Of course there are many situations that are not life threatening where it's common to say that we "survived". "I survived surgery." "I survived chemo." "I survived the boss from hell." That's simply an expression that highlights that the situation was scary or horrible or difficult. It's not literal (with some exceptions, of course) and most people understand that.

    For the early stage breast cancer patient who through treatment has gone through nothing that was life threatening, and who for now (and hopefully for the foreseeable future) does not face a terminal diagnosis, how is the word "survivor" in any way accurate? What has this person actually survived? And why should 'survivor' become part of their identity?

    Having said that, I understand that "breast cancer survivor" is a term that is accepted within society (at least North America) and that this is how some women truly see themselves. I shake my head, but I'm okay with that. It's fine for them, but don't ever force that on me.