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

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  • Astrid
    Astrid Member Posts: 1,033
    edited December 2020
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    illimae, loved it!!!!

    well, I get the sentiment of the thread, I really do, but nah. Can't agree with it.


    I am definitely a warrior with enduring spirit.

    Happy

    Not a survivor...no way.

    I am a THRIVER.

    I get back up, I grow and change...I overcome.

    I do that. It's not something that happens to me.

    It's not passive.

    First of all I have to make a tiny decision


    Tiny...but momentous.

    Do I want to live?

    Do I want to stick around?

    Or am I secretly tired of life and happy for my ticket out.

    If I want to live, and live fully then I need to decide what I believe in.

    Do I trust that these medical folks have my back?

    Do I trust their years of training against me going it alone and trusting natural therapies some say have worked?

    A friend wanted to live, but she chose plan B and did not make it.

    I researched and actively put my trust in medical teams. I did that. It wasn't passive.

    It was a courageous decision because it was harder to choose chemo and rads than not. Knowing there may be side effects later is not easy. You need to know why you want to live and live well.

    That is an active decision. Especially when life has not been easy.

    Then there are the possible side effects of surgery. Like lymphedema. I have that.

    So when cancer came back, and I was tired and sick of putting on sleeves and the swelling and the aches and pain from surgeries and reco and on and on...

    I asked myself again. Do you want to live and why? What is your purpose here on earth?

    I answered my secret answers and said a big YES to rads again. To surgery again. To tablets again.

    I did that. I chose.

    I am courageous

    I am indeed a warrior.

    Not a survivor

    I THRIVE.

    Heartastrid.



  • marlegal
    marlegal Member Posts: 1,482
    edited December 2020
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    This has always been a pet peeve of mine too! I also hate the word survivor for the record. When I'd hear "Keep on fighting" when I was doing chemo, I wanted to slap them! I'd get so angry, and no one would understand what I was trying to convey. I felt an odd sympathy for people with heart disease, who have to deal with something their entire life. No disrespect to those with Stage 3 or 4 cancer who deal with it every day also. I was Stage 2 and felt like an impostor when people congratulated me for winning the fight or surviving or phrases like that. Bleh!

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2020
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    Astrid, I get the sentiment of what you are saying, but nope, can't agree with it.

    I expect that I would say "yes" to all the questions that you said "yes" to, but that doesn't make me a warrior. It makes me a human being, who like most human beings values life and isn't ready to leave this earth. Nothing more than that. For me, choosing a treatment that I don't want doesn't make me courageous, it just means that I weighed two bad options and picked the one that hopefully helps me survive, vs. the other option that puts my life at greater risk. Both of those options come with the risk of unpleasant side effects so I don't see one as being more courageous than the other. When I read what you wrote, I think about all the people who have through this site and who have wanted to live just as much as you and I, and who have made all those hard decisions to accept treatments with horrible side effects... and yet they didn't survive. They did everything right, and yet they didn't thrive, through no fault of their own.

    I'm lucky. I've had a relatively easy time with breast cancer (so far at least, and hopefully for good, knock on wood). But I've had other experiences in my life that have been more difficult and that have challenged me more - and yet no one considers me a survivor (or any other Rah! Rah! word) for having gotten through those times. What's so special about what we face with breast cancer? Yes, it's scary and treatments can be horrible, and the experience can be life altering. But that is equally true of many other life events. Of course, even with a 'good' diagnosis, breast cancer forces many of us to face our own mortality for the first time, and that may change our perspective on life. But consider that 1 in every 2 men and 1 in every 3 women will develop cancer during their lifetime. So isn't this just a part of life? I'm not courageous, I'm not a warrior, I'm not on a journey, I'm just human, dealing as best I can with what life has put in my path, just like every other human.

    I'm happy for those who are happy to see themselves as warriors. But that's just not how I see it and it irks me that others would put that label (or the "survivor" label) on me, just for going through something that I have been delighted to pass on and never experience.



  • EastcoastDaisy
    EastcoastDaisy Member Posts: 1
    edited December 2020
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    Wow- thank you for this. I have not posted before, but am very happy to know I am not alone in some of these thoughts. I was diagnosed in Oct 2019, and everywhere I looked were references to bc and pink ribbons- as if it already wasn’t completely engulfing my mind. We were even encouraged to wear pink ribbons at work. I think the pink ribbons really minimize the seriousness of the disease in many people’s minds. And the whole survivor/fighting/beating terminology drives me crazy. I could never imagine saying that I am a bc survivor, because as we all know, who knows what may lie ahead. Maybe I’m just superstitious! I do feel very grateful that my ILC was found during a routine mammogram, even though I have dense breasts.

    DX 10/19, age 62, ILC, left 1.2 cm, ER+ PR+ HER2-, node negative, 12/19 lumpectomy and sent node, oncotype dx 20, 2/20 whole breast radiation, now taking AI for 7 years.

  • Astrid
    Astrid Member Posts: 1,033
    edited December 2020
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    thanks Beesie.

    I love what you wrote. I have only just discovered courage in myself. I would never label anyone a warrior or surviver or thriver.

    Just posting my personal slant.

    What we go through personally does not denigrate or take away from others with different experiences. If I feel courageous and that I am thriving, it does not imply that others are not....these are my personal feelings relating to my life at this time. I can say I am thriving and drop off the perch tomorrow. It isn't related to time, but to quality of life. Even if I am bed ridden and in pain, I can still thrive with my inner life and if I don't thrive at some stage, that is ok too!

    The point I made about myself was where I faced deep in myself if I really wanted to still live..or would use cancer dx as a ticket out. For me facing and acknowledging deep dark fears WAS courageous. The cancer exerience helped take me to that place where I had to face giving a big YES to life, or just going through the motions.

    That's my p.o.v. I do believe I am on a very deep journey and cancer opened a gate for me. I don't find those words or expressions anathema but this thread is for those who do, so I shall clear off now.Smile

    ...

  • traveltext
    traveltext Member Posts: 1,051
    edited December 2020
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    after two cancers and two strokes I could probably say I’m a survivor. And I could rightly claim to be a warrior who’s been on a journey! But I feel I’m none of these because I’m not interested in reviving all the crap I’ve been through. Rather, I’ve been using my experiences to guide others recovering from their situations. In a way I’ve been outsourcing my fears of further medical dramas by using my knowledge and skills to understand that there’s a way through the mental and physical trauma we all experience.

    In the past year I’ve lost three dear friends who were part of my cohort of patients. Rob Fincher, Chiara D’Agostino and Paula Gaubert. Nothing I said or did made a difference ro their outcomes at the end of the day. Poor job satisfaction, you’d say. But no, I’m all the stronger for knowing these special people. They gave me so much more than friendship. And I’m in awe of those here like Beesie who have tirelessly trawled the boards at BCO dispensing sage advice, good cheer and hope. I’ve mostly moved on to Twitter and Facebook where I’m very active in the breast cancer spaces, mostly on male breast cancer, but also supporting all patients who post. Over the years I’ve gained a lot of contacts, very many in the medical professions, and continue to support mymany breast cancer pals.

    All of us here, and on social media, have a lot to offer, and each of us are doing the best we can. The fellowship and camaraderie we enjoy, and the strengths we’ve gained are surely enough of a reward that goes beyond cliched descriptions.


  • alicebastable
    alicebastable Member Posts: 1,939
    edited December 2020
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    As far as the pink ribbons and other crap goes, does it mean that breast cancer comes gift-wrapped? Can we find the cosmic gift exchange and return it?

    I think the whole ribbon thing is stupid anyway. I'd need an effing charm bracelet if I wanted to go that route. I see people on the kidney cancer forum getting tattoos of orange (I think) ribbons and wonder who the hell wants another souvenir, aren't the scars enough? I actually looked up ribbon charts and depending on which chart you find, the different colors mean different things. The red ribbon, for instance, represents:

    • Addiction
    • Adult Onset Still's Disease (AOSD)
    • AIDS
    • Alcohol Dependence
    • Apert Syndrome
    • Bleeding Disorders
    • Blood Cancer
    • Blood Clotting Disorders
    • Bronchiolitis Obliterans
    • Burn Victims
    • Cardiomyopathy
    • Cardiovascular Disease
    • Cavernous Angioma
    • Clotting Factor Deficiencies
    • Complex Regional Pain Syndrome
    • Congenital Heart Defects
    • Congenital Heart Disease
    • Congenital Heart Failure
    • Congestive Heart Failure
    • Courage and Inspiration
    • DARE – Red Ribbon Week
    • Diamond-Blackfan Anemia
    • Disaster Relief
    • Distracted Driving
    • Driving Under the Influence Prevention
    • Drug Addiction
    • Epidermolysis Bullosa
    • Erythromelalgia
    • Evans Syndrome
    • Factor XI Deficiency
    • Fanconi Anemia
    • Female Genital Mutilation
    • Giant Cell Arteritis
    • Granulomatosis with Polyangiitis (GPA)
    • Heart Defects
    • Heart Disease
    • Hemolytic Anemia
    • Hemophilia
    • High Blood Pressure
    • HIV/AIDS
    • Huffing
    • Human Trafficking – #REDSANDPROJECT
    • Hypertension
    • Long Q-T Syndrome
    • MADD – Designate a Driver
    • Marfan Syndrome
    • Mothers Against Drunk Driving
    • Platelet Donation
    • Poland Syndrome
    • Prinzmetal Angina
    • Red Ribbon Week
    • Sickle Cell Anemia
    • Sinus Tachycardia
    • Stroke
    • Substance Abuse
    • Support Our Troops
    • Thrombotic Thrombocytopenic Purpura (TTP)
    • Trafficking in Persons – Red Sand Project
    • Tuberculosis
    • Vasculitis
    • Von Willebrand Disease (VWD)
    • Wegener's Granulomatosis
    • Women's Heart Health
    • Zika Virus

    So, do ribbons-to-wear come with billboards, or a booklet, or an app, or instructions for playing disease/cause twenty questions to determine if the wearer has blood cancer or vasculitis or huffing (for? against?) or disaster relief (presumably for?) or hemophilia (should they even be wearing a pin with a sharp pointy component?)? Is there a ribbon for ribbon fatigue?

    Good grief.

  • moth
    moth Member Posts: 3,293
    edited December 2020
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    re - the ribbons. Taking aside the ribbon on merchandise crap (& especially the commercialization of breast cancer), when a person chooses to wear a ribbon, it's often because the act helps them focus on something that's important to them. Or helps them remember. People often say they're worried they'll forget the ones who have died. Whether a ta tattoo or a pinned on one, or the choice to wear a given shirt on a specific day, it can be a moment of commemoration for someone. They know the meaning, they know what it stands for.

    Sometimes people do it for advocacy so I guess they're hoping the ribbon will open conversation but it could just as well be something for them. Like a necklace or a bracelet or a black armband - it's their personal sorrow or experience they're choosing to honor in that moment.

  • moth
    moth Member Posts: 3,293
    edited December 2020
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    If there's one word that bugs me more than warrior & survivor it's thriver. Oh man, that seems so loaded. Now I can't just frigging survive. Oh no. that's not enough. Work harder. Do more. Fix your attitude. Repair your mental health. Calm your mind. Be at peace. so you can *thrive*!

    Oh please, no.

    I'm always team "if you showed up, you're absolutely rocking this thing" Just show up. Try to keep showing up, however you can. Angry, lazy, cranky & haven't showered? You're doing great.

    Also, some of us don't get the choice of whether to live.

    And cancer is our ticket out not because we choose to hand it in but it's because it's the only ticket we have in our hands and that damned conductor is coming down the aisle soon and there's nothing else to do except hand that one in. (er, I guess it turns out I am on some journey? An idyllic train journey.... with a murderer....)

    moth - setting the bar low: just show up :D

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2020
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    moth, I can't agree with you more. Just keep showing up. That's your job. That's my job. Some days that is all we can do, and other days we have more available. Yeah, I'll admit, "thrive" is a word that grates on me, too.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2020
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    moth, I appreciate your perspective on the ribbons. I'll have to remember that next time I scowl at a ribbon, although come to think of it, I only scowl at pink ribbons, mostly because they are ubiquitous. I understand that for less prominent ribbons, the person who is displaying or wearing the ribbon likely has a connection to and commitment to whatever the ribbon represents. With pink ribbons, too often they are displayed to "support the cause" with no thought behind it, no actual support going to breast cancer causes, and no skin in the game (literally or figuratively).

    To your second post, maybe we should replace the pink ribbon with this. Note the tiny bit of pink just so that it's clear that it's breast cancer we're talking about.

    image

    Nah, we couldn't get away with it. But I certainly agree with the message.

    Traveltext, thank you!


  • alicebastable
    alicebastable Member Posts: 1,939
    edited December 2020
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    "Thrive" is just more of that fakety-fake-fake-fake positivity inflicted on patients. If someone WANTS to be positive about anything, for themself, that's fine, but to have it as an expectation for others? Hell no.

    For my friend in hospice, I say she's enduring. That's it, and all it has been for some time leading up to her BRAVE decision to stop being a medical guinea pig.

  • moth
    moth Member Posts: 3,293
    edited December 2020
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    Beesie, ok, what if we nationalized nike and take the $16 billion in gross global profit in 2020 & put all of it to cancer research...then we get the logo and the $. win/win

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited December 2020
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    moth, that works for me.

  • GG27
    GG27 Member Posts: 1,308
    edited December 2020
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    My wise old GP told me when I was first diagnosed that my only job is to show up & no matter how hard it is to try to eat.

    I too hate survivor, thriver, warrior, any of these words that somehow make it seem like any of these will make any difference. And someone said to me just today to just have a positive attitude.... that it makes all the difference.


  • micmel
    micmel Member Posts: 9,866
    edited December 2020
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    right alongside you Moth.

  • alicebastable
    alicebastable Member Posts: 1,939
    edited December 2020
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    My beef with the ribbons (besides the obvious PINK ickiness) is that, as the list I posted shows, they're used for so many diseases and causes that it's lost all meaning in general. I guess I can see the point Moth made, although I'm still trying to wrap my head around needing a talisman to remember a someone who died. I'd rather have something that person enjoyed, or that represents what they enjoyed, than a reminder of the disease they had. But that could be my own personal hangup.

  • minustwo
    minustwo Member Posts: 13,078
    edited December 2020
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    Traveltext - so glad you are still checking in here. I don't do Twitter & Facebook but I surely do appreciate your wisdom & support on the BCO threads.

    Astrid - I'm sure it sounds like we're all piling on, but I don't think that's the case. Every one of us has to come to terms with this disease (or others that rear their ugly heads) along the way. I am personally offended by the terms warrior & survivor & thriver - but if it works for you - go for it.

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2020
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    One adjective I really appreciate is "strong." You don't have to be doing it "right," or be "winning," or be a "warrior" to be strong. When people say I am strong, to me that is a compliment.

  • minustwo
    minustwo Member Posts: 13,078
    edited December 2020
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    Mountain Mia - ABSOLUTELY - you bet your ass I'm strong!!! Not particularly a comfort to take to bed at nights, but still... And my journey of choice will be to the South Pacific when we can travel again. Cancer journeys are NOT fun or to be enjoyed.

  • Astrid
    Astrid Member Posts: 1,033
    edited December 2020
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    thanks Minus Two.

    I deserve everything I get for contributing in this thread. I came in peace, writing what I felt in response to posts. No need to justify further.

    Moth, l love your posts they make me laugh.

    Whatever works for us. Right?

    I see you are for Pink ribbons moth and articulated your counter opinion well.

    I tried to articulate why I disagree here, And that's about it. I have no doubt I 'll face many challenges ahead as sister death loves to get up and about in my face. I am determined to befriend her and ask myself what exactly it is I fear. Apart from leaving loved ones behind. Can I let go? Can I find peace? I hope so.

    I don't know where I'd be without a strong inner life. I don't think I'm a flakey flake moth. It's just I've been working through unresolved anger and all those fully human emotions for a long long time. My peace and thriving is hard won. Not fluffy.

    And Not pink! Well maybe a bit pink.Smile

    vive le differences

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2020
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    Astrid, I appreciate your view and am glad you commented, even if I don't agree with you totally. If you are thriving, YAY YOU!! And I mean that most sincerely. I do think that what some of us bristle at is that people outside of the breast cancer experience have expectations of us. And frankly, they can be hard to live up to. They love us and WANT US to thrive, to be warriors, to fight like hell. But really we often feel like, man! what do you want from me? I can't be what you want. It's too much to ask.

    So if you're a warrior or a thriver or a survivor, that's good. We just can't all feel that way.

  • Astrid
    Astrid Member Posts: 1,033
    edited December 2020
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    I totally get that Mountain Mia.

    And thankyou!🌾


  • sunshine99
    sunshine99 Member Posts: 2,591
    edited December 2020
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    You all are the best! I love the discussions and even when we don't see eye to eye on everything, we're in "this" together - whatever we choose to call "this".

    Carol

  • moth
    moth Member Posts: 3,293
    edited December 2020
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    Astrid, I wouldn't say I'm PRO pink ribbon. I have one of these on my car tho (etsy shop https://www.etsy.com/ca/shop/NXTLVLVINYL?ref=simpl... ) It's just that they don't bug me.


    Fu Cancer Decals image 0

    Someone I follow on social media - their baby just died of cancer. They have a ribbon on their profiles and banners to raise awareness of her type of disease & I get it. I mean, I think there's sometimes this sense of 'what can i do?' and maybe it's really pretty symbolic in the end but so much of our lives is symbols and superstitions so one more is not really bugging me. And I don't know the colors and I won't but if someone was wearing one I'd ask them to tell me about it.

    I like my bumper sticker more tho. I park it in the cancer agency parking lot & do an angry laugh pretty much every time I see my car. I hope others do to.

  • Astrid
    Astrid Member Posts: 1,033
    edited December 2020
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    I have a hat with the same message.

    A highly prized item.Happy

  • micdpowers
    micdpowers Member Posts: 83
    edited December 2020
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    Someone once told me I was "incredibly inspiring". Ugh. For me, I know they're just trying to say something nice, but the cliches just feel so forced and awkward and I don't know how to receive them without making a face.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited January 2021
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    Loving this thread. And have to say, I want to eviscerate people who tell people to be positive. Seriously? I’m positive BC is going to get me. The “when” is the key question.

    I also don’t feel I am a warrior, survivor and definitely not a thriver (that one just irritates me). I’ve had a lot of friends and colleagues complement me on my can do attitude, carrying on despite the diagnosis. And my option would be??? I could be wrong but I don’t think spending my remaining days in the fetal position would be particularly helpful...

  • buttonsmachine
    buttonsmachine Member Posts: 339
    edited January 2021
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    This is an interesting discussion. I certainly sympathize with much of what has been said here, although as a counterpoint I think a few people might be interested in reading a collection of writings titled On Illness and Healing.

    There are a few different contributors, but the authors have dealt with what we have dealt with - cancer, life altering disability, illness, and living in the shadow of death - and how in living with these things, narrative and creativity can be transformative and transcendent. Narrative is how we make sense of our own stories, and become the heroines of our own stories. (The "warriors" on our "journeys" perhaps.)

    Anyway, the authors explain it much more eloquently than I ever could, so here it is: On Illness and Healing

  • angieb92
    angieb92 Member Posts: 291
    edited January 2021
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    Thanks, buttonsmachine!!