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

No offense to those of you who see this as such, but I do not. I feel like that symbolism is tantamount to a quest for enlightenment and that is bullshit. It's hard not to bristle when people without this diagnosis assume that's who I am now. I was never that kind of person before, and I don't see myself becoming that kind of person in the future. I'm not sure if mental health is the right place to put this, but the way I see my diagnosis and treatment versus the way most other people categorize it makes me feel as if I'm the odd one out.

My take is that I have a disease that is being treated, not fought. I received tests and a diagnosis that stressed me out more than I thought anything could, rocked me to my core, and brought an immediate pivot to my perspective and priorities. I suspect that by the time I am finished with treatment, it will change me more, possibly permanently, possibly not. It's definitely transformative, physically and mentally, no doubt about it.

Can this be a safe space to bitch about that touchy feely stuff?

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Comments

  • moth
    moth Member Posts: 3,293
    edited December 2020

    I hear you.

    I will not fail this or lose some battle. Medicine will fail me and my body will lose its ability to maintain homeostasis.

    I'm going to one up you & say that really nothing about me changed - I had no pivot or change in priorities. I'm still procrastinating, still grumpy, still borderline reclusive. Nothing changed about my priorities because I liked my life before & nothing about it changed except this stupid cancer is interfering with all of it. I had a plan (go back to school, start new career, do more dog sports, adopt more dogs) and I kept plodding on. I was writing exams between surgery & chemo in 2018. I was back in school while still doing rads in Sep 2018. Now with a stage IV dx in Feb 2020 I had to give almost all of it up. Some might think maybe now I'll have some revelation....but nope. Still same old me.

  • mochipie
    mochipie Member Posts: 45
    edited December 2020

    Moth, thank you. Pink ribbons also can suck it as far as I'm concerned.

  • fifthyear
    fifthyear Member Posts: 29
    edited December 2020

    Bravo, right on

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2020

    If this is a "journey," I'm suing the travel agent. NOT what I signed up for!

    Yeah. I agree with moth. I am still me. My opinions, my values, my temperament have not changed to any measurable degree. My stamina and energy have, but that's a different story.

  • sunshine99
    sunshine99 Member Posts: 2,459
    edited December 2020

    Oh, this is going to be a lively discussion!

    I looked up the word "brave": "ready to face and endure danger or pain; showing courage"

    OK, so if the opposite is "Cowardly" where someone turns and runs from what frightens them, how am I supposed to do that? I'd love to run from this disease, but to where?

    Depending upon who calls me brave or strong, or whatever, I'm either OK with it or excessively annoyed.

    I can't wait to see more comments on this! Thanks for starting this one MochiPie!

  • mochipie
    mochipie Member Posts: 45
    edited December 2020

    Adding to the list of annoyances: being told I'm going to kick cancer's ass.

  • alicebastable
    alicebastable Member Posts: 1,932
    edited December 2020

    May I join in? Although I had Cancer Lite™ with just a lumpectomy and radiation, I'm always waiting for another body part to be removed since I've had other cancers. Stupid hobby to have. But I haven't battled anything with cancer. My hip replacement was more of a physical battle. I have a friend who was diagnosed with stage 4 de novo ovarian cancer about nine years ago. She'll have an occasional good year and then horrible ones, either stronger and nastier chemos, or having a stroke, or falling a lot, or mystery body malfunctions... and now she's been told there's nothing much more to do. If she wants to use terms like warrior or battle, she's earned it - but she doesn't use those words. I also dislike (maybe hate) the word "survivor" because it's so stupidly competitive sounding, and makes it seem like those who don't "survive" didn't try hard enough. Screw that.

  • blusteryday
    blusteryday Member Posts: 49
    edited December 2020

    Moth and Mochipi, I’m right with you! My brother made a comment about how his neighbor, who had breast cancer treatment, was “a new, better, person” after her treatment...

    What in the H does that even MEAN? All it has down for me is make me skeptical of health care professionals, and *I’m* a healthcare professional.

    I’m tired of the warrior, stoic, hero, brave comments, too. I’m dealing with a disease here, I’m not in a gunfight or sword fight or battle.

    Thankfully, I found Susan David shortly after my diagnosis and her TED talk about “Emotional Courage” was exactly how I feel. My mom is the worst about needing me to “stay positive” **insert eye roll here**. When I had surgery she said “They will find it isn’t even cancer...”, then when it was all confirmed, She said “You will be FINE, you’ll just have to take a hormone pill because your Oncotype will be LOW!” My Oncotype was 57. Seriously, I feel that if someone isn’t willing to look at ALL possible outcomes and prepare for the worst/hope for the best with me...then they need to share their “positivity“ somewhere else. Yep, I’m grumpy, too, Moth! LOL!

  • finallyoverit
    finallyoverit Member Posts: 131
    edited December 2020

    I’m right there with you ladies. I refuse to wear or have anything pink in my house. I’ve already told the family that if they include “she lost her battle to bc” in my obit, that I was going to come back and haunt every single one of them. Grrrr!

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,626
    edited December 2020

    Be positive! Yes, I have been told that I have lived with stage IV for 9+ years because of my attitude. Does that mean those who did not survive lost their lives due to negativity? Utter nonsense. My attitude may make my life easier but cancer does not care.

    I strongly dislike all pugilistic similes too. I am not a warrior, fighter or battling. I simply have breast cancer, full stop

  • mochipie
    mochipie Member Posts: 45
    edited December 2020

    I have asthma, but I'm not fighting it. I'm not an asthma warrior.

  • edj3
    edj3 Member Posts: 1,579
    edited December 2020

    Yeah and I never heard what a warrior I was and how brave I was with the melanoma dx. And should one of these two cancers recur and kill me, I won't have lost a battle. I will have died from a disease.

    I mean, do we call people who get COVID warriors? Or the flu? Or pneumonia?

  • edj3
    edj3 Member Posts: 1,579
    edited December 2020

    Oh I guess I'm not done.

    My own mother keeps telling me how brave I am (lots going on, most not cancer) and I'm tired of telling her that the only way out for me with any of my health issues is through them. That's not bravery.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,626
    edited December 2020

    Ah yes, bravery. Someone once said that they could not be as brave as I have been. Brave? Not me. I just show up and do what needs to be done. What alternative do I have?

  • 2019whatayear
    2019whatayear Member Posts: 463
    edited December 2020

    I agree. I don't know what to say when people say I am brave or a warrior. That's probably why I didn't post about having cancer or going thru treatment until after I finished chemo. It's exhausting. "brave" I went to the doctor, I followed a treatment plan.What is brave about that?

    I feel like the whole brave/warrior/fighting cancer puts the onus on the patient for an outcome they don't actually control. Makes people who don't have cancer feel better somehow.

    I have noticed that in news stories they are saying the same thing about poeple who have COVID and die--that they lost their battle. It's not a battle it's a virus and I guess the thing in common in both cases it's a real crap shoot. Some people who you'd think would have a great prognosis don't.


  • smc123
    smc123 Member Posts: 30
    edited December 2020

    I don’t want to upset anyone but I can’t identify with those that say they are grateful for having cancer. I hated having cancer and the emotional damage baggage I’ve carried since treatment has ended. The only thing I can say is what I have learned from having cancer is the importance of stepping outside of my own comfort zone and try to be there for others.

  • abigailj
    abigailj Member Posts: 100
    edited December 2020

    totally with you on this - if I wanted to be a warrior I would have enlisted in the Marines...why is this disease romanticized this way?! Can you imagine this being done with any other medical condition?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,434
    edited December 2020

    Brave, strong, warrior, cancer journey, survivor... I hate all those terms. They imply our pro-active involvement - that we are choosing the situation we are in and choosing to react in a way that makes us brave or strong or a warrior or a survivor. In reality most of us are simply doing what we have to do because we don't have a choice.

    These words also shame us when we struggle, when we are not feeling brave or strong or even remotely like a warrior - how dare we not live up to the expectations of a cancer patient?

    As for survivor, well, that's just the luck of the draw, isn't it? It has nothing to do with how well someone "fought the fight". The implication of labelling us as survivors is that those who do not survive did not fight hard enough or weren't strong enough or didn't do the right things, and that's just awful. And usually very far from the truth.


  • minustwo
    minustwo Member Posts: 12,988
    edited December 2020

    Battle, warrior, survivor - toss all those titles in the trash. I agree with all of you & love you for saying so. And grateful for cancer? I think not. I too didn't tell anyone I had BC until all my treatments were completed - and few people even then. Didn't want to deal with people's responses. OMG - My brother made a comment about how his neighbor, who had breast cancer treatment, was "a new, better, person" after her treatment... How ignorant is that?

    One of the best things I've seen on this site is - you don't have to be brave, you just have to show up. And we all did that. Oh - and I agree - I HATE pink. Too bad because it's a flattering color on older women.

    GREAT thread Mochi. Thanks

  • ceanna
    ceanna Member Posts: 3,120
    edited December 2020

    This is a great thread and made me think. I appreciate everyone's perspective and comments. I have felt that since I told so few people of my diagnosis and treatment, I did not get labeled as a survivor or a victim (my least favorite word). I had an LX and rads, and nobody could have known I was under treatment by looking at me. I went through it and went on. Yes, BC comes up in my medical records, and the unknowns when I go for my annual mammogram or have another pain here or there raise my levels of concerns, but I don't think it changed me much. Life goes on as we encounter it, and I choose to deal with it day-by-day without being labeled. All the best to all.

  • melissadallas
    melissadallas Member Posts: 929
    edited December 2020

    And as to “journey” it isn’t just with cancer that it goes all over me. Every imaginable inane trite thing, a bunch of folks (usually women) preciously state that they are “starting their journey.” See it all the time from women beginning their craft project on a particular sewing group I’m in. You’re making a damn quilt..

  • mochipie
    mochipie Member Posts: 45
    edited December 2020

    I have found my people. Thank you all for backing me up.

  • minustwo
    minustwo Member Posts: 12,988
    edited December 2020

    Melissa - love it - starting to make a quilt - LOL.

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2020

    I finished quilting one today, nearing the end of that journey, just need to put the binding on. HA seriously made me laugh.

    I don't mind at all talking about it with people who know me, or even are acquainted with me, and have some reason to bring up my illness. (I'm in remission now, so I'm really thinking about last year.) But it weirded me out when strangers would come up to me and ask if I was "winning my fight." UGH. Well. Hm. I don't know, really. I hope so. Guess the bald thing made them think intrusion was welcome.

  • Poppy_90
    Poppy_90 Member Posts: 84
    edited December 2020

    I wish there was a way to love a post, because I would love this, Mochi!

    I only shared my diagnosis with a few close friends and family members, and early on in the conversation was a request to please not send me any pink shit. Can I cuss on here, because I’m at that angry, cussing, tired stage of treatment?

    Seriously, Survivor really gets me though. It implies the end...aren’t we all just surviving as best we can? I feel like it would be bad karma to ever label myself a survivor.

  • edj3
    edj3 Member Posts: 1,579
    edited December 2020

    abigailj and I actually did enlist in the US Army. THAT took some bravery on my part (also ignorance as I had no idea what I was getting into) and was a choice I made, you know?

    And smc123 I'm not grateful I got this cancer. I'm not a better person (or worse) because I got this. It was just a crap shoot.

  • abigailj
    abigailj Member Posts: 100
    edited December 2020

    exactly Edj3 - everyone dealing with this disease got no choice whether to enlist (hmmm, guess we were all drafted and bet we'd all have opted to dodge it if that had been possible). Saluting you for your choice to serve in the Army!



  • lillyishere
    lillyishere Member Posts: 769
    edited December 2020

    Mochi, thank you for creating this thread. I wonder who came up with these nicknames for us: warrior, survivor, pink ribbons, etc. Why didn't come up with the word Gladiator - forced to an arena without knowing what the future will hold. Just wondering, even though I don't want to be called gladiator either.

  • betrayal
    betrayal Member Posts: 1,966
    edited December 2020

    Okay, when I was told I was a survivor by one of my BC physicians, I informed them that to date, all I had survived was the somewhat brutal treatment for BC. I felt brutalized by my PCP because I cried during my annual physical and she labeled me "depressed" and that has been impossible to have removed from my chart. It was "situational depression" IMO and I never took any antidepressants. This is not to disrespect those who deal with depression and need medications to cope because they deserve my support and empathy, but for every MD since then has asked about my "depression" and what meds I am on for almost 5 years now. I think we all have days that are challenging whether it be related to BC or other stressors. On my bad days, I cuss, scream and am not a nice person but I do recover eventually. I will never win the Miss Congeniality award but that is okay, too, since I wouldn't have won it pre-BC either. I prefer my somewhat cranky, honest self.

    When I did complete one of those depression screens initially at both the RO and MO's offices, I was situationally depressed by my new dx and treatment. Neither of those physicians offered any assistance nor guidance based on what I had recorded. I refused to fill out any more of those forms on further visits because it just was filed in my record and I felt like they had a quota to meet or some regulatory agency mandate to fulfill.

    I felt betrayed my my HCP's because they lied to me about: the aesthetic outcome of my 2 lumpectomies (the surgeon, who I fired), the collateral damage WB radiation would do to the breast, nipple and skin, cording and breast lymphedema although I only had SN (1 node) performed, and then the RO strung me along for over 18 months about the possibility of breast reconstruction. She even went so far as to send me to a PS who made me watch a film on reconstruction options and then after evaluating me told me it was not an option due to the surgery and radiation damage. He then asked if he could take photos of my severely deformed breast for his gallery! I nearly cut his balls off and then sent him a letter later telling him what a despicable human being he was. As for the RO, I never trusted her again. She was a liar and offered false hope instead of being honest.

    So I learned that those BC doctors who should have been helping me with this transition, were not trustworthy and I lost all respect for them. I would not refer anyone I know to either the BS or the RO. I still see my MO and feel she has been the most caring and trustworthy through this travail (not a journey). While I cannot escape the ravages inflicted on my body, both physical (I see them daily) and mental, I do control what medical experiences I am willing to submit to now and feel I have earned the right to say "no". So I have adapted to my new comfort zone but I would not call this "normal" ever. It's like the Twilight Zone of what purports to be "normal".

    Thanks for creating this forum. It has been interesting to read the comments and to see how we have all coped.

  • illimae
    illimae Member Posts: 5,505
    edited December 2020

    Cancer is a shitshow and I don’t consider myself brave but I do think I’m tough for all I’ve had to endure just to survive. I’m also not a better person for it but I will admit to a certain freedom from obligations and a more thoughtful appreciation for all the little things.