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

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  • 1openheart
    1openheart Member Posts: 250
    edited April 2021

    It has been a very long time since I have logged in and replied to any posts, but girl, I agree with you. I still dread October and all of the pink "awareness" campaigns. We don't need awareness...we need research, funding and access. And as far as the battle against cancer being fought by warriors who are on a journey.... no thank you. I have always felt that my cancer was not some invader that needed to be vanquished. It was a disease that needed to be cured and that disease was caused by my own cells going a bit crazy, not some invading organism that I had to battle. Yes, I needed to be strong and face what was ahead of me and I needed to work with my team of doctors to get better, but my cells were my cells...cancerous or not. Me getting cancer was just what is was, me getting a crappy, sucky disease and I know that I was lucky to have caught it when I did, before my little crazy cells busted out of my ducts. They had already occupied several areas of my breast and were so very close to becoming invasive. So, yes, I am beyond grateful for the technology that found my DCIS before I was symptomatic and for the doctors who worked to keep me well. In my mind, it is the docs, nurses and researchers who are the warriors. Take care.

  • sf-cakes
    sf-cakes Member Posts: 505
    edited April 2021

    Runor, it is just so damn unfair, and absolutely not your fault. Cancer doesn't seem to give AF about our attitudes - I was just hospitalized two nights for a rare reaction to one of my new MBC meds, and I had been super hopeful and positive about starting on it. Scream, cry, rage, watch bad TV, drive fast and listen to extremely loud Billy Idol, any reaction makes sense.

    Sending you virtual hugs, on this plane, like elderberry said (love that!)

  • runor
    runor Member Posts: 1,612
    edited April 2021

    Thanks everyone. All I can say, thank you. 

  • traveltext
    traveltext Member Posts: 1,050
    edited April 2021

    Runor, that’s a bummer. Another jog around the cancer trail is not fun, but at least you won’t be called a warrior on a journey here! I’ve been treated for another cancer, prostate, and it’s an exclusive club I’m in. You’ll no doubt find out for sure soon and I hope you get timely and appropriate treatment.

    Elderberry, thanks for your kind words. I’ve always felt welcome here and wouldn’t be sticking around seven years later if it were not so.

  • sunshine99
    sunshine99 Member Posts: 2,474
    edited April 2021

    traveltext, it's always nice to see you here. You're like one of the "steadies" for me.

  • runor
    runor Member Posts: 1,612
    edited April 2021

    Traveltext, thank you. I fear for my mental state. I am not holding it together at all. I guess I'm on this ride, tied to the roof rack while a lunatic drives at breakneck speed over narrow, windy mountain roads. Yay. Sorry that you have a double whammy too. It just sucks. 


  • Nel
    Nel Member Posts: 597
    edited April 2021

    rumor

    Gentle hugs and prayers Cancer just sucks

    Nel

  • momand2kids
    momand2kids Member Posts: 118
    edited May 2021

    I love this thread. I ha e made it very clear to h that I will come back and haunt him if the words”....she lost her battle... appear anywher

  • AlwaysMeC
    AlwaysMeC Member Posts: 107
    edited May 2021

    I just wanna say, I have used the word journey, but only because I didn't know what else to use and probably was campaign brainwashed. I like that you posted it's not some kind of enlightenment end goal. I do very distinctly remember one of the first things I said to my husband when I was diagnosed, it was that I do not want to be a warrior and I am no fighter. I didn't pick this fight. I am a doer. So I will do what needs to be done, even if it sucks. And this sucks terribly. I don't feel like a fighter, warrior, or whatever. I just feel like a mom and a daughter and a sister that needs to do what needs to be done to get rid of this stupid illness that picked on me.

  • illimae
    illimae Member Posts: 5,517
    edited July 2021

    Here’s one you all might enjoy. Kinda like cancer to me, lol

    image

  • Emily21
    Emily21 Member Posts: 67
    edited July 2021

    I am not pink, brave, or a warrior. I'm not fighting anything, in fact I wish I could get in a proper fist fight, I would do a good job, but I'm just doing what I'm told, taking my poison, doing what medical science has suggested and then I'm keeping my fingers crossed. Im keeping my head down and my mouth shut. Pink my arse. 🙄

  • traveltext
    traveltext Member Posts: 1,050
    edited July 2021

    That’s how it often feels Illimae.
    Hang in there Emily, you’ve had a big nine months. Nothing really to fight because this shitty disease requires stamina and resilience, perseverance and focus. It’s not a battle, it’s a process. Pink it sure ain’t. Good luck with it all.

  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited July 2021

    I LOVE this thread! I know people mean well but I couldn’t handle the “you’ve got this!” comment. Ummm…no I don’t. Not at all. Someone sent me “warrior” tattoos. I threw them out. I wish people would understand that you are just trying to get through treatment. The fear of dying sat with me constantly - I was a mess. With therapy and medication, I’ve managed to climb out of that deep, dark hole. I have a friend who was diagnosed a year after me and we can vent and laugh and cry together about all of this. For that, I am SO grateful

  • runor
    runor Member Posts: 1,612
    edited July 2021

    Mae - exactly. Pointless Positivity I call it, as you know. While we all need hope we also need to realize that hope comes equipped with large, sharp teeth. Hope can lift us up. IT can also tear the guts out of us. 

    DutchieGirl - having that one friend who 'gets it', who knows exactly what you mean when you ask , how are you doing? Because often people want to hear that you are 'doing' okay, as in the laundry, cleaning, grocery shopping, cooking and other daily tasks are all back to being yours, looking normal, like nothing happened at all, while you are pushing the vacuum and screaming inside your head WHAT THE ACTUAL FUCK IS GOING ON !!!!  My cancer friends get that. It's unspoken. It's just a shared known. Almost like you have left The Land Of The Blissful Living and joined The Land Of People Who Know Damn Well They're Going To Die. It's a sucky club to belong to.

  • divinemrsm
    divinemrsm Member Posts: 5,896
    edited July 2021

    runor, you truly should have your own blog. You have a gifted writing style that speaks to many.

    Love the meme, illimae!

    Dutchie, I cannot stand that phrase "you've got this" used in any context, especially bc. I love that you threw out the warrior tattoos.

    Traveltext, I really relate to your "it's a process" comment, because I feel like so much in my life has been a process, bc included.

    I am okay for those who are fighters and warriors. If that framework gives you what it takes to deal with bc, I am all for it. However, it's not fair to insist everyone embrace that kind of approach.

    momand2kids, I wrote my obituary a couple of years ago, and start out with "MrsM lived courageously with metastatic breast cancer for ___ number of years." No losing battles for me.

    The word I use to describe myself: tough. I've been living with mbc for over 10 years. That teaches you some things. I'm a petite blonde with a pleasant personality, can strike up a conversation with just about anyone. I don't look sick. I make a mean pan of brownies. I think people see me as a nice, sweet little lady who never cusses and always thinks positive thoughts. Um, no. I CAN be a sweet lady but I am also TOUGH. I do not like to be underestimated. All these people confessing their fears to me about getting a goddamn needle in their arm for the Covid vaccine. Uh, please. I get IVs and needles throughout the year and have for the past 10 years and still going. Plus so much other cancer shit to deal with that they don't know the half of it.


  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited July 2021

    Runor, I really am still taken aback when people say “you look SO good!”. Again, they’re well-meaning but I think “what the eff did you expect?”. I feel like they expected me to stay in that chemo patient zone. Along with that comes the “just get back to normal” train of thought. There is no normal any more.

  • elderberry
    elderberry Member Posts: 1,037
    edited July 2021

    Divine: I like "lived courageously"........I hate the terminology of "losing the battle", like maybe if there were enough tanks, more boots on the ground, allies who could actually do something then we would "win".

    Dutchiegirl: I haven't "got this" ...."this" has got me.

    mae: I am going to print your "stay positive" pic and put it inside the front cover of my diary where I keep track of all the appointments, scan dates, infusion dates, notes to remember to ask my MO stuff when we talk next time, my weight ups and downs.

    Maybe I should answer people with "hanging in there". "Hung on until she couldn't".....I dunno. That almost sounds like a personal failure too.

  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited July 2021

    Omg Divine, don't get me started on the covid jab fear! I went through so many jabs when I went through treatment as most of us do. I was never offered a port because I was rushed into chemo. I did all my infusions (AC-T and herceptin) on one arm. So please please please people- I don't want to hear about your fear of two jabs! I know I've lost patience with certain things since my diagnosis. Im ok with that. 😉😉

  • illimae
    illimae Member Posts: 5,517
    edited July 2021

    I think “feminist” can be misunderstood by some because lately the loudest voices seem extra angry but I’m old enough to know better, where the fight for equality came from and how far it’s come.

    What do you all think of a female VP, not in general but specifically this last election? A lot of women were cheering but I thought it was a hollow victory. No men were even considered, so how was that true equality? I’d love to see someone win the top spot against all others.

  • lw422
    lw422 Member Posts: 1,375
    edited July 2021

    illimae--Amen, sister.

  • illimae
    illimae Member Posts: 5,517
    edited July 2021

    Lol, oops, the feminist statement was posted here by accident, please disregard

  • divinemrsm
    divinemrsm Member Posts: 5,896
    edited July 2021

    I'd like to add that by tough, I don't mean I'm out there wrestling alligators everyday to prove myself. Being tough, for me, is a quiet, steely determination to get through the rough parts of living with mbc. I've had the bottom drop out of my life and withstood some gut punches along the way. I had to toughen up. I still experience the roller coaster of emotions: frustration, anxiety, depression, but I also have long stretches of being grateful for ordinary days as well as high points and reaching milestones. When possible, I do my best to stop mbc from interfering with getting on with the task of living life fully.



  • divinemrsm
    divinemrsm Member Posts: 5,896
    edited July 2021

    One more thing: in recent years, the word “unicorn” has started being used to describe women with metastatic breast who have what’s considered an exceptional response to treatment, living years beyond expected statistics for the disease. I fucking hate the use of that word! I am a woman in the flesh, not a mythical creature or fictitious kind of animal. And please stop trying to make something “cutesy” out of having mbc!!!! This is not a Rainbow Bright kind of world. Let’s live in the reality of it.


  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited July 2021

    The other one I can’t handle is “God has a plan”. Ummmm, why did my young-ish friend, who is a strong Christian, die of ovarian cancer? I know we don’t live forever but I have a whole different view when it comes to God. You can tell me you’re praying for me (I actually love that people were praying for me) but I get my back up when people think that God’s plan included giving me cancer. Again, people mean well but maybe just bring me dinner or drive me to an appointment.

  • divinemrsm
    divinemrsm Member Posts: 5,896
    edited July 2021

    Yes, the "God's plan" is a horrible comment, Dutchie. People are all over the place with God: " He's a loving, merciful God. He will take care of you. But if tragedy happens to you, it's just His plan." I mean, that seems to me like you're trying to turn God into whatever you want him to be in the moment to fit the story. I try to be respectful of people's faith, but stop trying to explain illness and disease away with supernatural ideology.

  • runor
    runor Member Posts: 1,612
    edited July 2021

    (hypothetical conversation)  God has a plan? You know this for a fact? What is that plan? Oh, you don't know that? So if you know there is a plan but don't know what that plan is either god thinks you are too unreliable to confide in or your god is a flaky idiot. Either way, why should I take the word of anyone that God has a plan?  That is, at best, a guess and a hope and clinging to the desperate belief that all this insanity called life has to have some meaning. Some. Is there a god? I don't know. Does he have a plan? I don't know. But no one else knows either. People who tell you god has a plan have no plan what to say in the face of hard life realities. It's a cop-out of the highest level. It's a way to skirt around difficult feelings and awkward situations. Because plan or not, getting cancer is a shitty plan for anyone for any reason. If this is god's plan I say he shouldn't be in charge anymore !!

    Warrior, fighter, survivor. I think we use these words because no language has been developed to accurately cover the process of cancer. At least here in Canada it's like you get sucked into a vortex and whirled around and then spit out. You end up not where you started and not at all looking the same. The people around you often seem oblivious that you've just had your clothes ripped off and hair yanked out by a tornado. I used to resent them for not 'getting it'. But I realize now that until you are in it, you can't get it. Can't. Before Cancer (BC) I was so sure I knew what I'd do 'if' I ever got it. And I used to say if because in my mind there was no way I would get cancer. Not me. Nuh uh. Other people. They get cancer. IT's a sad thing. But I will skip through life unblemished and unaffected. WRONG! Oh, the arrogance of the former me. I am ashamed. And now when I hear someone has cancer I do not give them advice, I just nod and listen in the knowing that their lives have been ripped apart at the seams and even if they look the same, NOTHING about them is the same. And what words are there to name this event and knowing? I don't think we have them yet. 

    I think covid came up with a gooder with the term 'long hauler'. I think that should be used for cancer too. "The Divine Mrs.M was a long hauler. With cancer, she did everything she ever wanted to do, baked brownies, told off traffic cops, knitted sweaters and beat-up bad guys. All the while dealing with the task of living while dying. She was a long hauler and she kicked ass."  I have to say I had never heard the term 'unicorn' for use with metastatic patients and I had a visceral gut reaction when I read it just now. How utterly degrading, insulting and derogatory. Talk about having your experience glossed over ! Oh my god. Anyone surviving with metastatic BC has paid a dreadful and untellable personal price to do so. The burden carried is staggering even as it looks like it's not. You are much more like the starving foreign donkey, starved, over-loaded, whipped, saddle sores, yet still faithfully carrying the load. There is nothing delicate, sparkly, magical or pretty about long term cancer treatment. 

  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited July 2021

    Runor, you are so bang on. I don't see your stance prior to getting cancer as arrogant. My mom and both of her sisters had breast cancer and I was READY!! When it happens to me, I'll catch it early, have a double mastectomy and be done with it! You can see by my diagnosis that nothing is farther from the truth (except the double mastectomy!). I have a friend who is a heavy smoker and she said that she realizes one day she may get cancer, but she's READY FOR IT! I almost spit out my coffee when she said that. And here's the thing - she has an autoimmune disease that makes it challenging to get the covid vaccine. She has to have all sorts of meds first and be monitored etc etc. She was freaking out on the phone - almost hysterical. I wanted to ask her what she was afraid of. I mean, dying from cancer doesn't seem to bother her. How is a fatal reaction to a vaccine any different? I know I sound flippant because I do love her dearly and hope she's around for many years. But until you hear the words, "It's cancer" you don't know how you'll react. It minimizes my reaction to the diagnosis to say you'll be able to handle it.


    All right my brave warrior friends, you've got this! God has a plan!! Lol. Have a lovely day everyone. I'm so glad I found my peeps!

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2021

    Thanks, Dutchie. By the way, you look great! I know you can beat this thing. Stay positive.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited July 2021

    Lol, I hope any newbies reading who don't know me recognize my sarcasm.

  • moth
    moth Member Posts: 3,293
    edited July 2021

    Divine, thanks for raising "unicorn" . I hadn't thought of this perspective. Do you think outlier is better?