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

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  • trishyla
    trishyla Member Posts: 698
    edited August 2021

    That sounds very challenging, tinkerbell65. Do you have a therapist of your own? It might help for you to have someone talk to about your fears and anger and frustrations. There's no shame in asking for help at a time like this. And you are always welcome to come here and unload.

    Trish

  • alicebastable
    alicebastable Member Posts: 1,934
    edited August 2021

    Feel free to vent, here and in the steam room and anywhere else that feels right. I remember getting my first cancer diagnosis over the phone while I was at work and composing an email to a researcher. For some reason, I kept typing while talking to my gynecologist. To this day, I wonder what garbled (and possibly personal) crap I sent to that poor guy. It must be really difficult to be in a position where most of what you do is listen, while trying to keep your mind from going down unwanted paths, and having to summon up the empathy or understanding (or whatever emotion is appropriate) when all your emotions are tangled in a knot. There are times when busywork is a real mental relief.

  • bluebird44
    bluebird44 Member Posts: 1
    edited August 2021

    I am right there with you! I feel like I have faught enough to make it to 46, now this? Has to be some joke the universe is playing on me or simply trying one last time to take me out. I think my husband thinks I have lost it. He just doesnt get it

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2021

    Tinkerbell65 - I can relate somewhat, but my issue at the time was pain. I was a middle school guidance counselor and my case load was 350 students. There were days I don’t know how I did it. I remember feeling as though I was listening to my students from far way, and I’d respond, but almost as if I just saying words, what the words were? I had no idea. I felt like that when I was recently diagnosed with my recurrence. Everything after the words “the cancer is back” was muted out, like tunnel vision, I could see and hear that she was speaking, but had no idea what she was saying.

    I meet with a therapist once a month, more if necessary. I learned early on, that for me, even the counselor need to be counseled.

    Sometimes you just really need to take the time and deal with the emotion you’re feeling, in my most recent case it was anger and shame. I’m not working anymore, but I, know that personally, I couldn’t have been of any help to anyone the way I was feeling

    I hope your days get better!

  • rah2464
    rah2464 Member Posts: 1,192
    edited August 2021

    Tinkerbell that sounds truly difficult. You spend your days giving to others, hearing their difficulties without receiving anything back. Under normal circumstances I am sure you have mechanisms in place to "refill your tank" so to speak. Things have gotten a lot trickier now that you have this diagnosis. The stress can really impact you. I hope interacting here can help alleviate some of that stress. I remember being surprised at how draining the whole process was, physically and emotionally. I wish you all the best in the days ahead.

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

    Tinkerbell, this is a perfect place to vent. We are listening. I also agree that it could be helpful to talk with a therapist. We can offer support, but one-on-one counseling with a trained professional may help you gain insights we can't provide here. You probably heard or even read the best selling book "Maybe You Should Talk to Someone" by Lisa Gottlieb. The title goes on to describe what the book is about: "A Therapist, HER Therapist, and Our Lives Revealed." Psychotherapist Lisa Gottlieb seeks answers to issues she faces by seeing a therapist herself while continuing to counsel others. It's a fascinating read and a book I recommend for anyone to read.

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

    Regarding the "pinking of breast cancer", I agree with all the points everyone has made on the topic. A few more things I'd like to add. One is that many people donate or buy something like a pink bauble or t-shirt in order to make themselves feel good about "giving to the cause". Their thought process does not go beyond that point. If an email from "Trinkets R Us" pops up and offers a gorgeous plastic pink elastic bracelet guaranteed not to break in the first 24 hours for only $9.99 plus free shipping with proceeds going towards "breast cancer awareness", they cannot resist. Not only do they get this fantastic piece of jool-ree at a bargain price, but when they wear it, others will see what a thoughtful, caring person they are to help represent all those lady soldiers battling the big bc. The buyer has no clue where the money goes to and they never ask. But hey, they feel GOOD! Or, they can toss money at the problem, too, just buy that 50-50 raffle ticket for $5 and when they win, donate it all back to a vague "breast cancer awareness" cause that they have no clue about and it's not ever specified where the money is going to. But you know, they feel GOOD they gave that money. Ain't that such a nice feeling?

    Along similar lines, there are many companies and organizations that pink all kinds of things in October so they look good to the public and appear to be very caring. But if you look at something like the NFL, whose players wear stuff like pink shoes and arm bands that month, you see they use Pinktober as a distraction from the players who've committed domestic violence against women. And these companies make big, big bucks from the marketing of it. People are finally asking why the emphasis on breast cancer when there are other cancers, and I recently read that NFL teams are now going to be making their own choices what to support rather than just bc across the board.


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

    OK, this is the kind of mood I'm in this morning: I'm not on a journey, I'm on a bloody roller coaster. Did anyone see the movie "Roller Coaster" back in the 70's? Some dude is going around theme parks sabotaging the roller coasters. I feel like I'm on one of those rides! My apologies if I'm not supposed to post links. Remove if necessary. :)

    https://www.youtube.com/watch?v=ioMMQawXq4g

  • barbojoy
    barbojoy Member Posts: 47
    edited August 2021

    RIght-on, exbrnxgrl! I could not have said it better!

    SF-Cakes, I hate it that people disappeared on you and that people often disappear on women with metastatic breast cancer. I haven't personally known anyone with MBC but I have a good friend w/ metastatic melanoma. She and I have been friends for a while now and we don't just talk about cancer, but when we do-- we really do. She shares all of the dark and twisty experiences, procedures, side-effects and fears that she has (maybe not all her fears, but some) and she is the only person with whom I have shared a post-op pic of my chest. I am really lucky to have had her in my life pre-diagnosis and she is one of the first people I called once I was diagnosed. I don't know what the future holds for my BC. But, I hope I'll never be someone that runs away from a friend or coworker w/ MBC. Your post reminds me to go out of my way to NOT be that person.

    PS: F the pink ribbon! I have cancer. Not cotton-candy, Tutu, Barbie doll, Baby girl, She's a hero, Warrior princess disease.

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

    Tinkerbell, I relate very much to your post. I'm a psychologist at a medical center, and at first I thought I would only take a month off post-mastectomy (surgeon recommended 1 month), but then cancer was found in my lymph nodes in the pathology report after surgery, had to have chemo and then chest wall radiation. My oncologist did not want me working during any of it, she said the chemo drugs were "harsh" (she was not kidding) and I would be fatigued from the radiation (also true). I'm fortunate to have worked for over 15 years there and had a ton of extended sick leave - I know not everyone has that luxury. I honestly couldn't be present for my patients when I was first diagnosed, and there were days during chemo that I was dissociated and sobbing and could never have helped anyone else. Not every day, fortunately, but quite a few days. It was hard to step away from work but I do think it was best for me and best for my patients to work with someone else during that time. I hope you can take a longer break, if needed.

    Barbojoy, fortunately it was only a couple of people who just couldn't deal with my MBC diagnosis, and I do also have one friend who I can tell all the dark and scary stuff to. She would never say any of the pink cliches to me! I'm very grateful to have someone like that in my life. I'm glad you have a friend like that, too, and I hope you are healing well from your very recent surgery.

    Divine, the "jool-ree"!! Lol, yes to all of that! I'm just waiting for someone at work to ask me to be a spokesperson during October, and I intend to punch them in the mouth. Figuratively. Or maybe bop them on the head with a foam pool noodle, which I will carry with me from now on.

  • alicebastable
    alicebastable Member Posts: 1,934
    edited August 2021

    SF-Cakes, what, you don't want to be this year's Pink Poster Person? I'm always happy I'm retired so I don't have to go through any of the rah-rah-Pinktober embarrassment. A co-worker (who was otherwise a wonderful person) had breast cancer right after I had endometrial cancer, and she would introduce herself to anyone and everyone as "Jane Doe, Cancer Survivor!" like it was part of her name or title. She'd sometimes try to drag me into it and find me something in whatever color she thought was appropriate (I think it was teal or aqua, but I always thought blood red would have been most appropriate with all the hemorrhaging I did before anyone thought to do a biopsy). I did my best to be invisible at those times, and let her shine in her head-to-toe pink glory.


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

    Many of you know this website that I put up a few years ago with help from the Pinktober Sucks thread here.

    Pinktobersucks.com





  • nopink2019
    nopink2019 Member Posts: 384
    edited August 2021

    TravelText - Made me think about a fiend who got BC when we were 32, back in 1987. Several of us participated in a 5K to "raise awareness". That was little more than a decade after Betty Ford publicly discussed her radical mastectomy. If you are too young to remember, here's a good summary of the secrecy surrounding BC 50 years ago.

    https://www.cancertodaymag.org/Pages/Fall2012/bett...

    In 1987, "raising awareness" was still an important thing, treatment was very limited and surgery was always radical. Now, it's not shameful (for either sex). Real $$ and dedicated research is what we need, not pink "jool-ree". As the article referenced by TravelText says "The culture of the pink ribbon, started as a non-commercial way of helping raise awareness of breast cancer, has lost its way ..."

    I have a couple of pink tshirts, but they stay in the closet during Pinktober.

  • daenerys30
    daenerys30 Member Posts: 10
    edited August 2021

    I do believe that your mental and emotional well being plays some part in cancer treatment. I have moments when I want to give up and not get my treatments, take my meds, eat healthy, exercise, go to work, clean my house or even get out of bed. I think having a positive and pro- active mindset does help a lot. But I'm not in fight with cancer, I can't summon it like some kind of demon and get in a fist fight with it (although I would win because I bite). I'm not looking at cancer as some sort of spiritual quest and I will find some deep meaning in the end. Screw that. I'm not going to get some pink ribbon tattoo or post inspirational stuff on face book. My sister in law gave me a necklace that says "survivor " on it and I've never worn it. You don't give that to someone who was in a car accident or shot and lived. And why do people act like having breast cancer is some invitation to some sacred sisterhood?

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

    “My sister in law gave me a necklace that says "survivor " on it and I've never worn it. You don't give that to someone who was in a car accident or shot and lived. And why do people act like having breast cancer is some invitation to some sacred sisterhood?“

    Daenerys, wow! You really hit the nail on the head with that one!


  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited August 2021

    I really love this thread. I did a post on FB recently, using some of the info I found here. One of my Stage 4 friends said that she hates the word “battle”. If it was a battle, she would have won. Another “friend”, who’s never had cancer, couldn’t handle it and dropped me as a friend, both on FB and in real life. It took me a day or two to get over that but I don’t need any more bullsh*t in my life. She wasn’t there for me at all when I was going through treatment so this is for the best. You learn who your real friend are when you go through something like this.


    Here is my FB post -

    It's been over two and a half years since I was diagnosed with an aggressive stage 3 cancer. I am very happy and thankful to be able to write this.

    I want to say that I know people are well-meaning and want to offer support. And I definitely needed support. In speaking with others who have been through cancer, here is some advice on what not to say.

    "You've got this!" No, THIS has ME. And it has me tightly wrapped in its poisonous tentacles and I don't know if I'm going to survive.

    "You're so brave!" No, I'm not. I'm doing what I'm told needs to be done. My fear is so strong that I can't sleep, eat and go about my daily business without fear clutching at my heart.

    "You're a warrior!" I don't WANT to be a warrior. I'm not a warrior. I'm someone who follows direction really well. So I attended all my appointments on time and did what I had to do to try to get this cancer out of me.

    "God has a plan!" Wait what? God gave me cancer? I'm an Arminian through and through - I'd like to think God was sitting beside me in the doctors office crying along with me, holding my hand, when I got the official news. He was there every step of the way. I know that. And thank goodness my oncologist had a plan! Substitute this one with "Can I pray for you?" and then do it.

    "Are you cured?" Nope. Never will be. There is no cure for breast cancer. I will be considered in remission five years post-diagnosis.

    "My mom/cousin/friend had breast cancer. She died from it". I don't need to add anything.

    "You get a free boob job". I don't need to add anything.

    "Is there anything I can do?" I know what you're thinking - this seems like a nice thing to say. And it is. But it's far more helpful if you can be specific. Our minds are in a whirl and we are not processing things well. Maybe say "hey, I know this is overwhelming right now for you but I'd like to bring you a meal. What would be better, Thursday or Friday?" Or "I know you'll have lots of appointments. Let's see if we can figure out some times I can drive you to the cancer centre."

    I love how people came forward to take care of me. I will never forget that! You are forever embedded in my heart and I'm grateful for you every day. Now, let's live the best lives we can!!

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited August 2021

    Great post Dutchie! I struggle to understand what offended your friend. Perhaps the problem was, she knew wasn’t among those who stepped up with meaningful support…

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

    Well, that ticked all the boxes for folks here, DutchieGirl, a nice summary, and I'm glad it sorted out your friends.

    DivineMrsM and daenerys30 spot on for the survivor tag. We've all survived a number of illnesses and accidents to this point in time, and I've always wondered why cancer, for which there is basically no cure, gets this word attached to it more than all the other survival options. Ironic, really.


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

    Absolutely fabulous post, DutchieGirl! The poisonous tentacles, yes, that's so what it feels like. Also, the free boob job one, which I heard a couple of times, slays me. Free?!? Is it, though?

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2021

    DutchieGirl- the free boob job...UGH!!! I just recently had my exchange to implants with fat grafting. Someone told me that I should be happy with my new perkier foobs and flat stomach. Excuse me?! Happy for having my breasts amputated and having a flat stomach all to be diagnosed with a recurrence 5 days later? Yea...I'm super happy! [sarcasm] It's as though I'm/we're supposed to look at this as a reward for passing some sort of test. Puhleez.

  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited August 2021

    SF-Cakes, I think some people get nervous when they hear the word “cancer”. My mom dropped to 92 pounds during her chemo treatment and someone said she was so “lucky” to be thin. And a friend of mine, who more recently had cancer, was just getting her hair back from treatment. Because of covid, salons were shut down. A stranger asked my friend where she managed to get her hair cut to which she replied that it was her hair growing back after cancer treatment. And this woman said “oh you’re so lucky”. My friend said no, she wasn’t lucky. Some WTF moments for y’all!

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

    SFCakes, your comment strikes me as the perfect way to respond to someone equating reconstruction of breasts after mastectomy as a free boob job:

    “Free?!?!?!?! IS it, though?“


  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited August 2021

    I hear ya, Ivy. It feels so insensitive when people think new boobs are a reward. The docs are just trying to restore some semblance of normality to my very disfigured body. And that is only a small portion of the physical mess. I’m not even going to start on the emotional toll cancer takes on your body.

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

    DutchieGirl: Wow - you knocked it out of the park. Did your so-called friend get spooked by your DX? Was not being around you meant it would never touch her? Was she thinking that bs phrase "It is because I love you so much I don't want to be with you and watch you fade...." or something like that? Free boob job? That one is a doozie. Are we supposed to be wandering warriors on a journey, like a disgraced Samurai, sword at the ready to take down anything and all things that get in our way?

    I was given a small metal disk to attach to my car key ring "F**K CANCER" Yeah, that one was okay.

  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited August 2021

    Honestly, Elderberry, I was baffled by the whole thing. She actually sent me a text when I asked her WTF happened. And it was all about her. How I never ask about her kids or her. I was thinking that she never asked about me when I was going through my stuff and never, in the history of our relationship, did she ask about my kids. Or anyone in my family. I just texted back that I hoped she has a good and happy life and then I blocked her. Like I said, I no longer have a tolerance for bullsh*t

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,642
    edited August 2021

    Oh, the free boob job comment is the one that really upsets me. I worked with a rather well endowed woman who went on and on about how she’d love to have a bmx to get rid of her large breasts. I tried to ignore her for a while but I finally let her have it. I think I may have raised my voice for emphasis…I have stage IV breast cancer. This was not a happy, voluntary operation and this is not what you want to do when you have a cosmetic concern. I have cancer, the kind that results in death. How dare you think that the problem of your big boobs in any way equates to a mastectomy for breast cancer! For G-D’s sake, get a breast reduction but don’t imagine for even a second that your situation and a mastectomy for breast cancer are even remotely related.

  • alicebastable
    alicebastable Member Posts: 1,934
    edited August 2021

    Dutchiegirl, my goodness, you said everything we've all wanted to say!

    daenerys30, I'm the first one to hit souvenir shops when I travel, but I'll never understand the tacky jewelry and tattoos for cancer. Aren't the damn scars enough? Does anyone really need a reminder? "Oops, forgot about my cancer, I better put my pendant on!" JFC, who wouldn't want those days when it's not the first thing on your mind in the morning and the thing you go to sleep with at night? Even those of us who had lower stages will always have Schrodinger's Cancer.

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

    Dutchiegirl - perfect. Absolutely perfect.

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

    Brava, DutchieGirl.

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

    Alice--LMAO.