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

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  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited December 2020
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    Amen, Sisters.

    What I do is Endure. Thatʻs it.

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited December 2020
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    last June, I had my umpteenth surgery. So, before they put me in la la land, a nurse goes over my medical history. And, as another person is getting ready to put the IV in my left foot, because they can’t use either arm, the nurse says to me, “Boy, have you been through the ringer.” Hmmmm....I thought, a stark, yet polite....well, not sooo polite way to describe how I got to here. Yes, two emergency life saving surgeries, breast cancer and violins playing now for a rare, but not too rare genetic disorder, Ehlers Danlos Syndrome which has caused me to have lots of orthopedic surgeries, has not, and I repeat, has not given any new meaning to my life.

    My life is, what it is, nothing more, nothing less than what I make of it. I will never be defined by my maddening medical history. That is not a journey. Homer’s Odyssey? That’s a journey. Noah and his Ark? A journey.


    My living of life is closer to Constantine Cavafy’s poem, Ithaca. My history and my future are made up of my family, friends and books. They are my journey. They keep me centered, calm and joyful. They all take me to different places in my heart. They sometimes make my heart so full of happiness. I could be saddled with pain and loss. But, I choose to safely store those two emotions in a small compartment in my heart. There is enough in life to worry about, so why let pain and loss stifle me? And worry? I try not to do too much of that too....


    So, I am on a journey. But it isn’t a breast cancer journey, nor is it a journey comprised of being put through the ringer from all my other maladies. My journey is letting life unfold around me and soaking up the things that bring me joy.

    When I do arrive at the finish line, which I hope is decades away, I hope I will be remembered for how I lived rather than for the way I died....



  • olma61
    olma61 Member Posts: 1,016
    edited December 2020
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    illimae, I think I am on the same page with you. I think I'm pretty tough to have gone through everything I have gone through, especially in the beginning ...just to get myself into treatment was a “battle" as I was uninsured when I started. Then, showing up for Taxol every week, etc. I don't mind patting myself on the back a little, although in the beginning when my sister told me “Wow, you're taking this really well", I rolled my eyes and said “just doing what I have to do right now. “

    I have not been through anything that thousands of others haven't gone through and some of them, much more. I think we are all pretty tough for enduring it all and for showing up.

    Is the “cancer journey" “teaching me" anything? Sure, but no more or no less than any other life experience has. Well, except for that greater sense of urgency I have now, to go ahead and do things I really want to do, because tomorrow is not promised.

  • cowgirl13
    cowgirl13 Member Posts: 774
    edited December 2020
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    I, too, can't stand all the warrior crap. MochiPie, thank you for starting this post!

  • rah2464
    rah2464 Member Posts: 1,192
    edited December 2020
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    I am so not a fan of the survivor moniker either. None of us make it out of this world alive, we all just have a more pronounced situational awareness than we did prior to a cancer diagnosis. This is a complicated disease, and the emotions around it are even more complicated. Thank you so much for creating this thread so we can all give voice to our frustration about the pink washing of breast cancer.

  • traveltext
    traveltext Member Posts: 1,051
    edited December 2020
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    Great comments here. This was my take a few years ago

    We read a lot about how cancer is a battle, a correlation that is as sensational as it is inaccurate. A battle implies an enemy, whereas cancer, the uncontrolled division of cells in our body, is an illness with a cause that is sometimes known, more often not. It means dealing with the disease with your immune system, medications, surgery, chemo drugs, a healthy diet, regular exercise, and with the support of loved ones. Finally, you either die of the disease, or with it. Then there's the unfortunate implication that if cancer gets the upper hand, you haven't "fought" it hard enough.

    Cancer is no journey. Most journeys have a planned destination, but a cancer diagnosis represents an unexpected life diversion into a medical process over which you have very little, if any, control. It's an unexpected turn of events, a bit like planning a trip to Bali and ending up travelling in Syria. Cancer takes you places you don't want to go and when I take a real journey it's to somewhere I want to be.

    Now, a few years later, I’ve hardened my attitude towards the language used to describe those of us who have gone through treatment for this disease, because five people I got to know well on this forum have died, and because I know survivorship is something that can easily slip from our grasp. Giving my pal Rob a big hug on one of his dreadful last days, we were lost for words as I was leaving. Fuck cancer, he said, fuck cancer I repeated. This just about sums up my attitude these days.

  • summerangel
    summerangel Member Posts: 182
    edited December 2020
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    I'm with all of you. I understand that people are trying to be kind when they say these things, but they drive me crazy. I guess there are a lot of people who enjoy the terms and welcome them, though, or they wouldn't be used so extensively. Even this October I saw a local news interview with a woman who has breast cancer and she was calling herself a warrior and survivor and fighter. Ugh, I had to turn the channel.

    Personally, I tell anyone I had breast cancer if it comes up in conversation because I've found that if I talk about it like any other illness people seem to accept it that way, too. It seems to normalize it a bit and not make it some scary thing.

  • ilana_lisa
    ilana_lisa Member Posts: 1
    edited December 2020
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    I am with you. And THANK YOU for articulating the feelings I have been having since day one of my diagnosis.

    The journey thing just blows my mind. Even a close friend asked me if I was keeping a journal to memorialize my journey. I'm not sure what she had in mind, like a scrapbook or something? I politely told her that no, this isn't something I wish to look back on with fond memories.

  • ctmbsikia
    ctmbsikia Member Posts: 756
    edited December 2020
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    If I could make it ONE DAY without seeing myself or thinking about what happened, and what could still happen, THEN you can call me a survivor.


  • illimae
    illimae Member Posts: 5,607
    edited December 2020
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    ilana, scrapbooking, lol! I can see it now “dear diary, had my skull cut open for brain surgery today but the hospital breakfast was pretty good (insert smiley face and needle stickers) and a decorated hospital wrist band 😆

  • debal
    debal Member Posts: 600
    edited December 2020
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    ilana, omg! I'm glad you corrected your friend. The idiotic comments have definitely decreased for me unless it is someone that knew and I haven't seen for awhile.

    I tried to think back at what I said to others going thru BC prior to my own diagnosis. Trying to think about the stupid, uneducated comments I may have made. I shudder to think what I could have said. My best friend was diagnosed many years before me. I remember telling her I'm sorry that I had to "get it" to "get it". A coworker that was diagnosed said the same to me. She said " i'm so sorry i didnt understand and i wasnt there for you in the right way" My best friend and i lean on each other now when we have our waves of worry and anxiety. And its nice to come here for support. My mom is the one that's comments get to me sometimes. I'll say my thoughts then firmly change the subject and she gets the hint. She's 84, I love her and I choose to give her a pass I guess. I just don't go there with her.

  • debal
    debal Member Posts: 600
    edited December 2020
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    i know I never used warrior, bravery, or bought anything pink. I may have said "you got this" a few times. (Cringe,shudder, smack me)

  • purpleb3
    purpleb3 Member Posts: 8
    edited December 2020
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    Coming out of lurker mode to thank you for the laugh and thanks to everyone for this thread. I felt a little bad for my attitude towards the pink folders and notebooks I was given and tossed in the trash. Now I see I could have used them for elaborate doodles of fuck cancer surrounded by cute stickers, glitter and bows.


  • melissadallas
    melissadallas Member Posts: 929
    edited December 2020
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    I should add that I am on another quilting forum where ladies are asking advice all the time about making “comfort" or “"chemo" pink ribbons quilts. I always tell them they should rethink and just make a pretty “unpink" one, but, sadly, I tend to be the unpopulat opinion. Where are allthe cute testicle fabrics and quilts? Do people with Chron’s Disease get diarrhea brown quilts made for them

  • minustwo
    minustwo Member Posts: 13,116
    edited December 2020
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    OH MY - brown quilts..... and scrapbooks. Laugh out loud way to make my day!!!

    Traveltext - glad you re-posted your thoughts.

  • moth
    moth Member Posts: 3,293
    edited December 2020
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    I have a bumper sticker which says fuc (pink ribbon sideways) cancer. I don't know that there's anything more to say about it

    I do psych myself up for treatment or scan days (esp.now that we go alone for all apptmnts). I sometimes wear these

    image

  • mountainmia
    mountainmia Member Posts: 857
    edited December 2020
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    MelissaDallas, I make about 4 throw quilts a year for my local VA Hospital. (They are not "Quilts of Valor.") I make them in grown-up colors, not necessarily red-white-blue or patriotic layout or design. I always try to make one that might suit a female patient. Not everyone decorates their living room or bedroom with red, white, and blue! I actually really like pink, but if someone made me a pink quilt, it wouldn't get used.

  • edj3
    edj3 Member Posts: 1,579
    edited December 2020
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    Moth I love those. A friend gave me a small beaded bracelet where the beads are Morse code and spell out strong af. I love that thing so much.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited December 2020
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    Oh my, I was smiling at Mae's scrapbook when I came to Purple's embellished notebooks and laughed out loud. Which made my nurse poke his head in to ask if I was ok! Maybe not too many people laugh in Pre-Op. Today my “journey “ includes an exciting shore excursion tothe OR for an amazing stent exchange ERCP under anesthesia.

  • melbo
    melbo Member Posts: 266
    edited December 2020
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    I love this thread.

    My “journey” today included many, many phone calls to get same-day imaging because I have a blood clot in my jugular vein where my port catheter is. It was an incredibly long, stupid day where it seemed that if it could go wrong it did go wrong. Advocating for myself to insist on a same day appointment despite two different unhelpful front desk people telling me I could wait until Thursday does not make me a warrior. It just makes me a pain in the ass willing to call back several times in a row until I finally got the help I knew I needed.

  • rain88
    rain88 Member Posts: 160
    edited December 2020
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    What a great thread! I really enjoyed reading all the posts, thank you! "Journey", "worrior" "battle" and so on are overused metaphors that make me roll my eyes... And why would anyone want to gift us pink stuff knowing it is THE cancer colour? Do they believe we don't think enough about it and we woud benefit from cute reminders?! I don't have anything agaist pink, it's rather unfortunate that people would appropiate it in such a way.



  • illimae
    illimae Member Posts: 5,607
    edited December 2020
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    Rain88, unfortunately people have been beat over the head with images that say pink=support. We know better :)

    I actually don’t mind the color but rarely wear it, especially to the cancer center. I did once when I was bald and had a stranger tell me I’ll beat it but when I said I was stage IV, she looked so sad, I almost felt bad for her.

  • MsMurphy
    MsMurphy Member Posts: 32
    edited December 2020
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    I have been feeling a little stressed and anxious the past couple of days as I am about to start chemo soon after getting through 2 surgeries. Reading this has made me feel so much better and given me a laugh as I haven't bought into the whole pink ribbon thing either.

    When I first received my diagnosis, my thoughts were never about starting a journey or battle but about how much of a f'ing inconvenience this was all about to be. I felt good and healthy so was annoyed that this little pea size lump was about to flip my world and delay all the goals that I was finally in reach of and make me feel worse than I ever had.When I shared my diagnosis with my bosses, I told them I didn't want pity and that I intended to work all the way through this. I hate that look people give you like you are practically dead just because you happen to have breast cancer.

    Moth, I bought myself a similar bracelet that says "I can and I will..." I wear it on days I feel that I need a little mental boost. I also got a pair of socks that say "f🎗ck" on one and "cancer" on the other. Some days a sense of humor is the only way to get through this. 💪

  • rain88
    rain88 Member Posts: 160
    edited December 2020
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    Illimae, you "almost felt bad for her", what an ironic twist. (I can't help but smile, a kind of an absurd joke.)

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited December 2020
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    Nice bracelets, moth and MsMurphy. I have a necklace with a saying in Japanese and English:

    Fall down seven times, Stand up eight

    It’s what I need right now. I also like Keep calm and carry on.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited December 2020
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    Melbo, not a warrior, not a traveler, just a pain the ass. Aka someone who knows how to advocate for herself!

  • 2019whatayear
    2019whatayear Member Posts: 468
    edited December 2020
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    Illimae - your posts are just the best. Smile And you are one tough cookie- or tough as nails whatever metaphor you prefer.

    I was watching a session of the San Antonio Breast Cancer Symposium this morning and did you know that Black BC patients are less likely to be prescribed Herceptin for HER positive BC. Black BC patients are more likely to be diagnosed at a younger age and with TNBC are less likely to be included in clinical trials and I could go on. So for what it is worth I've decided anytime anyone says I am brave or a warrior, I'm going to say as a white lady who just turned 50 I'm not in a battle--but there are lots of BC patients that have to fight to get the care I don't have to fight for and that's not right.


  • traveltext
    traveltext Member Posts: 1,051
    edited December 2020
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    2019whatayear, I watched that session too, hoping that it might mention the disparity with Black and White men too. They didnt, so I posed a question to the speakers.

    Love your reason to withdraw from the battle!


  • 2019whatayear
    2019whatayear Member Posts: 468
    edited December 2020
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    Yes that is very important too- I want to know about those disparities as well! I am glad you are there asking your questions. You are an excellent patient advocate!

    It was interesting for me to learn that men w/BC are more likely to have the BRCA gene--which does makes sense and I suppose it is pretty self evident.

  • illimae
    illimae Member Posts: 5,607
    edited December 2020
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    I find it appalling that any HER2+ person would not be given Herceptin, it’s standard protocol! I wonder if there’s more to it, perhaps lack of insurance? If it’s a doctors call, it is beyond wrong.

    2019, thanks, happy to provide a laugh :)