Fill Out Your Profile to share more about you. Learn more...

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

Options
1101113151618

Comments

  • minustwo
    minustwo Member Posts: 13,190
    edited August 2021
    Options

    I usually only lurk but wanted to add a welcome to Tinkerbell. You are a great addition to this thread.

  • AMG2
    AMG2 Member Posts: 90
    edited August 2021
    Options

    I'm so glad for this thread. I'm fairly newly diagnosed triple positive, and have basically been in an extended panic attack since the bad ultrasound, and I'm so tired of being told, oh, you caught it early so you'll be fine (sure, maybe), or so-and-so had breast cancer and it was just a lumpectomy and some radiation, so you'll be fine. Sure, maybe, and that's great news, truly, for so-and-so, but I'm looking at surgery on Tues, and I don't know if there will be positive lymph nodes or not, and mine is not so-and-so's. I'm looking at a port in my chest starting Tues, and 12 rounds of taxol plus a year of herceptin, plus 6 weeks of radiation plus hormone blockers for the better part of the whatever is left of the rest of my life, and I'm going to have to try to keep working throughout it. And yes, it absolutely could be so much worse. But this is going to be a shitty year, and of course I hope it will be worth it, and I will never have to deal with cancer again, but there are no guarantees of that, and I'm so tired of being asked to be happy that it was "caught early." I'm not happy. I'm not happy for good reason. I'm not happy because there was something to be caught at all, and now my whole life is upside down.

    Anyway, I had been waiting to post until I was not in panic mode, but I'm glad to know I can post even in panic mode. :)

  • lw422
    lw422 Member Posts: 1,410
    edited August 2021
    Options

    Great post, AMG2. Sorry you have to be here, but we all get it. CANCER SUCKS.

  • runor
    runor Member Posts: 1,613
    edited August 2021
    Options

    I think pink is the emblem of magic thinking. Magic thinking can be like making a deal with the devil, or god, or the universe, or whoever you think is in control. Pinktober rolls around and you (a non cancer person) get all nostalgic and sad thinking about your breast cancery friends, so you don a pink t-shirt and sell pink lemonade at a wet t-shirt contest with all proceeds going to breast cancer research and you think, in the back of your mind, in the depths of your soul, where there is very little light, that this act of goodness is going to buy you a free pass. On some level you are worried about getting breast cancer yourself. So you strike a bargain.  "Look, Universe, look at me giving up my Saturday to raise funds to cure women. I have my heart in the right place. Surely you will excuse those caring, good people, like me. Surely when you are handing out random cancers you will hand it to someone who didn't wear a pink shirt and give out lemonade. I have acted in a caring, giving way and that should make me immune to getting breast cancer myself. I showed up and played pink and I hope I get that free pass I'm hoping for."  I honestly think that this is at the root of what motivates a lot of people. Most of the time people don't have a friggin clue what their base beliefs or values or ethics of motvies are. So while everyone gets on board with the pink wave of awareness and prevention, there is just massive fear simmering below the surface, all those women, scared TO DEATH of getting this fucking monster in their bodies. And with good reason.

    The other feeling is guilt. So I maintaint that many get in the pink out of fear nd hoping to earn a free pass with good karma and others feel guilt that their friends and duaghters got BC and they didn't. Either way.... it's a dog's breakfast.

    I am fund raising right now to fund a mammogram machine in the local hospital. Women around here have to travel to get a mammogram and wait looooong times because that one machine is overwhelmed with the volume of humans who need it. There is not one shred of pink involved. I am not raising funds for nebulous 'research'. I want a machine. Because we need one. Because waiting is pure hell. I know what my motive is and it's not fear or guilt. It's anger. And it ain't pink.

  • traveltext
    traveltext Member Posts: 1,053
    edited August 2021
    Options

    Tinkerbell, Yes, welcome to this band of rogues, you'll be right at home here. And please pass another one of those cookies!

    ST-Cakes, You are zeroing in on the psychology of people's response to a cancer patient. Going from hero to zero is a distressing scenario and I hope you have people who are still there for you. The pink bs is a screen for the disease's potential to advance. By keeping it all pink and fluffy, people will get out there and raise funds without thinking too much about people like you. We'll never let you down here.

    AB, Like you, I collect cancers and I have to say you meet the nicest people with them. Hoping that vulture doesn't get you.

    runor. Spot on. Do you have a link to the fundraiser for your small town mammography machine?

  • SuQu31
    SuQu31 Member Posts: 73
    edited August 2021
    Options

    Runor, can I like your post 1000 times at least? Oh and don’t forget the people who try to explain how you are different from them (so they never could possibly have the dreaded BC): “you did X, Y and Z and I didn’t do that,” or “you never did X, Y and Z, and I did.”

    And you know what else I don’t like? “I never could have done _____.” Actually, yes you could, if that’s what they told you to do, and don’t make me seem all “special” because I did. I was just following instructions. I’m no warrior. I’m just someone who wants to live.

    I have veered off topic and this seems more like ranting, but I get it on the pink warrior princess business. And by the way, I love pink and “they” have ruined it for me.

  • minustwo
    minustwo Member Posts: 13,190
    edited August 2021
    Options

    runor - I'd also be interested in the link to the fundraiser for your mammo machine.

  • lw422
    lw422 Member Posts: 1,410
    edited August 2021
    Options

    Today I wish I felt "like a warrior." Honestly, I feel more like a puddle of goo. I'd even wear effing PINK if it would help.

    I'm having a bad day and I hate this damn cancer SO MUCH. I feel sad and scared and hopeless. I'm afraid that after chemo and surgery I won't have "PCR" and I will go through this hell and die anyway, with my body mutilated with parts removed. It all just seems overwhelming sometimes.

    Then looming are the never ending scans and possibility of crap like lymphedema or collateral damage from radiation. Does this damn horror ever end? Where did my life go? I just can't seem to pull myself together and I feel so afraid of it all.

    I guess I should be in the "Steam" thread, but I'm not mad. I'm scared and defeated.

  • traveltext
    traveltext Member Posts: 1,053
    edited August 2021
    Options

    LW422, Hey, here's a tip that I got from my MO: Never have any preconceived notions about any phase of your diagnosis or treatment.

    I took that on board and survived never-ending scans, dodged lymphedema and collateral damage from radiation, and didn't even achieve pCR. Still good to go 7 years later.


  • exbrnxgrl
    exbrnxgrl Member Posts: 5,048
    edited August 2021
    Options

    LW,

    I second what traveltext said. You simply never know. I just retired from a long teaching career. The last ten years? I went to work and enjoyed my first graders while living with stage IV! I doubt that anyone could have predicted or imagined this. Don’t be so eager to believe that your life is ruined. Changed? Yes, but we humans can be quite adaptable. Take care.

  • waves2stars
    waves2stars Member Posts: 140
    edited August 2021
    Options

    Hot pink was my favorite color before last week.

    Runor, let us know how we can give to your fundraiser! And I loved your post.

  • waves2stars
    waves2stars Member Posts: 140
    edited August 2021
    Options

    LW422, I fear the same things you do. I’m sorry you’re day is so dark.

  • tulletutu
    tulletutu Member Posts: 3
    edited August 2021
    Options

    Thank you for saying so much of what I am feeling

  • tulletutu
    tulletutu Member Posts: 3
    edited August 2021
    Options

    glad you posted

  • lw422
    lw422 Member Posts: 1,410
    edited August 2021
    Options

    Thanks to all who responded; I really need to pull myself together. Sometimes it's just too damn hard.

  • cowgirl13
    cowgirl13 Member Posts: 782
    edited August 2021
    Options

    LW, thank you for sharing. You're not falling apart--you are falling together and the best way to do that, in my opinion, is to feel your feelings. And then its possible to move past them. You will get through this.

  • lw422
    lw422 Member Posts: 1,410
    edited August 2021
    Options

    I appreciate you, Cowgirl13.

  • harley07
    harley07 Member Posts: 316
    edited August 2021
    Options

    @LW - I've been reading your posts since you were diagnosed. You've been through so much this year and your life has been turned upside down and inside out. Please vent whenever you need to - we are here for you. (((HUGS)))


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

    Runor your fundraising campaign rocks. Please, please provide the link (if the mods approve of course)

  • serendipity09
    serendipity09 Member Posts: 769
    edited August 2021
    Options

    runor - I'd like the link as well.

    I read all your posts and I can sympathize with every single one them. The cards that we've been dealt are crappy, but I'm grateful to have this bunch who can understand fully the emotions that I'm having at any given time.

  • lw422
    lw422 Member Posts: 1,410
    edited August 2021
    Options

    Harley07--you have been so kind and supportive and I truly appreciate it. I know that my situation is no worse than any other poster on this forum; we all go through the "emotions of cancer"... fear and dread and anger. It's good that we have a place to let those feelings out, and that there are kind people like YOU who respond. Thanks again, very much.

  • runor
    runor Member Posts: 1,613
    edited August 2021
    Options

    LW422, it's too new for you. Too fresh. Diagnosed and treated this year? Yup, too new. You are still being whacked around inside the whirlwind. In a while it will spit you out, on your face, and you'll sit up all disoriented, looking a total wreck and say,  "where the hell am I"? Then you'll stagger around trying to act normal, look normal, BE normal. And some days you might succeed at SOME of those things and other days you'll suck at them all and not act, look or BE normal. As time passes you will find your groove with this ugly beast you have on board. You might get back to a life that looks normal, activities that were like before. But will you ever BE normal? In my opinion, no. You will have uninvited thoughts in your head that never used to be part of your scenery. Death will lurk in your thoughts in a way that it never did before. As time passes you will begin to be less aware. Then thoughts of death, mortality, an earlier end than you anticipated will leap out of the shadows BOO and you will be reminded no, not normal. But for now it's too new and expecting to be getting over this right now, don't even go there. Time. This takes time and you haven't had enough of it. Someone told me that it took 2 years after all treatment ended before she could wake up and cancer / death not be the first thing on her mind and last thing at night. Two years. That turned out to be pretty accurate for me. Give yourself time and be prepared to sit and witness every miserable feeling and thought, because they are going to happen, with or without your permission. May as well get a big old bowl of popcorn and settle in for the crazy show. 

    My 'fund raiser' is that I have made and donated items to be auctioned off for our local hospital. They do not have a mammogram machine and are raising funds to purchase one. Sure would have been nice to have all this closer to home when I was in the middle of it. I think this is a VERY worthy cause. I will try to add a link to the hospital and if anyone wants to donate, there will be a donate button on their page/site.  https://www.shuswaphospitalfoundation.org/ 

    I am also holding a 'contest' to win a welding cap, autographed by some local celebrities, through my Facebook business page. No money can be sent to my FB page. I am not collecting any money directly. All of it must be donated through the hospital foundation (link above). But the directions to enter to win a signed cap are on the pinned post on my FB page. It is not required to make a donation in order to enter, but it is asked that people please do. If any of you watch Rust Valley Restorers on Netflix or other channels, or follow The Rust Bros. on FB or Instagram, this contest will appeal to you. I will attempt to link to my FB page and invite anyone who wants to enter for a cap to please follow the instructions on how to do so. Old style mail-in contest. So far the chances of winning a cap are very high!   Thank you everyone for your kind interest.   https://www.facebook.com/headrighats/

  • lw422
    lw422 Member Posts: 1,410
    edited August 2021
    Options

    Thanks, runor. This has been a hell of a year so far, for sure. I'm finally done with chemo and having a single mastectomy on August 23, so more anxiety building... more shit I don't want to do. I know that my mundane life has circled the drain and I've got to get used to the new normal, but it blows. I appreciate your post.

    Good luck with the fund raiser; I'll check that out.

  • traveltext
    traveltext Member Posts: 1,053
    edited August 2021
    Options

    runor, the donation link works, it's just a matter of defining the hospital cause you want to donate to. They already have 2,2m out of the 3.3m required. I'm sure they'll raise the rest.


  • sunshine99
    sunshine99 Member Posts: 2,696
    edited August 2021
    Options

    LW422, I totally agree with runor. You are so new to this, that it's no wonder you're reeling from the shock. I remember it consuming my every thought, every hour when I was first diagnosed. It was the first thing on my mind when I woke up and the last thing on my mind before I went to sleep.

    Then there came a day (I don't remember how long it took) when sometime during the middle of the day, I thought, "Hey! I didn't wake up thinking about cancer this morning!!!"

    Other advice from people here was that once I had a treatment plan in place, I'd start to feel better. That was certainly true. What DIDN'T help was well meaning people (church people - why is often church people) who gave me useless advice, like "Think positive" "You're going to be just fine" and even "It's no big deal". That last one floored me. NO BIG DEAL??? Well, excuse me, but it IS a big deal to me.

    Anyway, do come here often, but try to avoid Dr. Google. He's not a real doctor and he gives bad advice.

    (((hugs)))

    Carol

  • Firecracker73
    Firecracker73 Member Posts: 6
    edited August 2021
    Options

    LW422 (and everyone else)- I don’t usually post and it has been awhile since I’ve been on the site because immediately (like my last day of active treatment immediately) my husband asked me for a divorce (Best gift ever) and the fun has yet to stop. From your post on August 1- it’s as if you read my mind. I’ve been dealing with this since 2017- it doesn’t seem like it will ever end. Now I am dealing with the side effects of radiation- including emergency oral surgery in March which the dentist and oral surgeon swear was directly related to my radiation. I hate to admit feeling defeated. I’m oblivious to the looks I get at this point- I don’t consider myself a warrior one bit. I’m a single mom who would move heaven and earth to be here for my kids. And I’m angry- can finally admit that- that cancer not only turned my life upside down and inside out- but the lives of my 2 innocent kids who should not have memories of their mom battling cancer twice during their childhoods. And, heaven forbid, it rears its ugly head a third time- I will put on my big girl patties (which are not pink because that color has been ruined for me as well) and deal with it again. I find humor has been the best medicine- and it is the type of humor only those in our exclusive club would appreciate. I had a woman try to sell me a wig at a yard sale when I was going through chemo. First of all- Who in the hell sells wigs at a yard sale? I never looked Looked frail or sickly when I was going through treatment. Quite the opposite. I ballooned up And have the appetite of an entire football team. Who was she to assume that just because I was bald I wanted a wig? Perhaps I just liked being bald? So completely and utterly tactless. I smiled and wished her nothing but monsoon type rains Every time she held a yard sale in the future. It has become a running joke that I have exploding body parts. My son’s best friend took that literally and asked if I could perform some tricks at his 12th birthday party. As much as I love his mother, she was one of those people who treated me like a leper when I was diagnosed. I think it was just too much for her to take. We live in Maryland and during my treatment, I would always tell everyone that I was Governor Hogan‘s Stand In. I am not a warrior, but I have always had a wicked sense of humor,, and Now I use the cancer card to get away w not censoring my mouth. Believe me when I sayThere are days it is damn near impossible to find the silver lining in any of this, But at least I am still here with my children and raising all types of hell. Please feel free to reach out and send me a private message if you ever want to talk. And never ever trust a woman That tries to sell you a wig at a yard sale! Sending you cyber hugs and tons and tons of positive vibes and energy.

  • melbo
    melbo Member Posts: 266
    edited August 2021
    Options

    LW422 — by next Friday (10 days!!!) I should be done with treatment, a whole year after starting. (that HER2 pos treatment plan…) I finished chemo in Nov, surgery in Dec, radiation in April. At this point cancer is not what I think about all of the time and I don’t constantly feel like every twitch might be a metastasis. I can see the light at the end of the tunnel and there are whole hours of the day where I don’t think about cancer at all.

    Of course last week I was told I need another minor surgery— one of the biopsy clips got left in place by accident during my original surgery and now they have to remove it on the off chance cancer cells are clinging to it. Three months ago news like that would have sent me into a tailspin of obsessive research and stress. Since I am in such a better mental space now I have been able to roll with it and was just happy that I could schedule the surgery for the Monday before my final infusion so I could still complete treatment next week.

    I am not normally a stressed out, terrified type of person — but the last year has shown me depths of fear for my own mortality that I wasn’t aware I could feel. It has been awful. But now that I am almost done with treatmentthose feelings have mostly gone away and the fear and anxiety seem proportional and reasonable. It does get better.

  • lw422
    lw422 Member Posts: 1,410
    edited August 2021
    Options

    Sunshine99 -- thanks; I appreciate your words of support very much. I'm totally with you on the platitudes from some well-meaning (but annoying) people. I have to cut them some slack because I know I was the exact same way when I was cancer-free and oblivious. Still annoying to hear how "great" I'm doing when my insides are churning with fear!! Hugs to you. (And I avoid Dr. Google; he already scared me senseless.)


    Firecracker73--bless you; I'm so sorry you are still dealing with side effects after all this time. I totally get that you want to be there for your kids and that you want them to have a life free from worrying about mom's cancer. Cancer is such a cruel disease, taking "normal" from our lives and leaving us to deal with the fallout. I agree that a sense of humor helps get through the crap of it all, but sometimes reality bites and a meltdown occurs. I appreciate your kindness and wish you the very best. I might just take you up on the private messaging, and I promise not to buy a wig at a yardsale!! (Thanks for the smiles.)


    Melbo--congrats on completing treatment next Friday! That must be a wonderful feeling and I can't wait to get to where you are. My best wishes to you for an easy surgery to remove the clip. (Post your surgery in the August 2021 Surgery thread so I can keep up with you.) I hear you on the mortality thing; it has certainly been a slap in the face for me these past few months to realize that death is not some abstract idea but an actual "thing." Really puts things in perspective. Take care and hugs to you as you go through your final treatments.

  • traveltext
    traveltext Member Posts: 1,053
    edited August 2021
    Options

    Firecracker, Great to have you here. Despite your travails, I was really pleased to hear your sense of humor was not diminished by treatment. Loved your story about the yard sale wig.


  • tinkerbell65
    tinkerbell65 Member Posts: 48
    edited August 2021
    Options

    OK, I have something to say that I can't really say anywhere else.

    I am a psychotherapist, have been for 30 years now. I was recently diagnosed with breast cancer and will have surgery next week. I am having one hell of a time at work, because I am focusing on other people's problems (online video sessions) when I am sad, scared, and feeling alone. I am good at my job, usually, but dammit, if this week hasn't been difficult!

    I have told some clients of my diagnosis, other clients, I just say I'm taking "two weeks medical leave." I figure a week off to heal from surgery, and a second week to regroup and deal with the emotional toll this is taking. I am leaving the option open of taking a third week off if I need it.

    I doubt any of my clients have noticed, but this week I've been distant, listening to them, but not fully present. sometimes just annoyed at having to be the supportive, encouraging, helpful person. The clients who know of my diagnosis, I tell that I am "trying to stay positive" but I don't know if that's even true at this point.

    The last two days have just been difficult and challenging.