Im not on a "journey" and Im not a "warrior." Who is with me?
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.... so .... treatment complications would be .... aftershocks?
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Well mine started out as about 6.5 but the aftershocks came late, before the big shake.
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I'm with Mae. I too was raised in CA and liked earthquakes. Just not the damage & loss of life. And yes I to am in Houston and have hurricanes, but we have plenty of advance warning for those.
Ceanna - I hear NotAsCalm. The treatment complications could be 'aftershocks'. My first cancer was "one & done" bi-lateral mastectomy. But then 2 years later I had a local recurrence that shocked all the docs - with chemo, ALND, more chemo, rads. Does that mean I started all over? Or do I get some cumulative credit? Or maybe more like a volcano that's always simmering than an earthquake?
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MT, I think you start over. If so, you’re pretty much with me, diagnosed IIIB in 2014. But give yourself a credit, and I like the simmering volcano analogy, so I’ll go with you on that one.
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traveltext, as the OP, I’m humbled and grateful for how much this topic has resonated. I meekly posted it as a newbie here, hoping that I wasn’t stepping into a den of battle language afficianados. This made my night
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MP, great post, and a perfect way to find your tribe. You actually stepped into a den of likeminded people! Or should I say people who don't dig all the bs that goes with this disease. Is there a cancer that has so much hoopla and metaphor around it? The lack of gravity is off-putting and while I know people mean well, it's really not appropriate.
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I like the earthquake analogy! I'd say mine originally was a 6.1, and just when we got everything straightened up - the few books that fell over were back on the shelves and we swept up the dirt from a couple of plants that tipped over - then the 8.9 hit. And every dish and glass smashed, and cracks appeared in the walls, and the entire house shifted on its foundation. And a sinkhole opened up in the driveway, why not.
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And now we just live in the rubble.
Don't let the NEAD status mislead you. Every single day I "manage" the side effects and adverse events -- diarrhea and the malnutrition that results, fatigue, hypertrichosis, injection pain, etc. My body has been aged and battered. I have been in the hospital numerous times, I have been in the operating room numerous times, I have a zillion appointments I must go to. Financial toxicity. And then there is coping with what in the most optimistic word I can find is the "uncertainty" of my future. Earthquake indeed.
Fantastic description, SF-Cakes.
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OMG! Thank you girls!!! I had this discussion with one of my brothers last year about this "warrior, fighter, kicking cancer's ass bullshit"; he got very upset with me for my position on this, which has been our "whole" life story anyway lol!! I don't like it . . . I never have and those preaching and screaming it are many times not living it . . . so until you have walked in my shoes . . .
And as I am of Irish heritage, I am also superstitious and forever remain humble . . . I don't think that I am better than anyone else, stronger or braver than others . . . so to walk around saying "Look at me . . . I am a warrior" kind of sickens me . . . you don't beat cancer . . . you can go into remission so to be as cocky as to say I have beaten it???? I could relapse . . . I could get a different kind of cancer tomorrow?
And my last and maybe most important thought, with this cocky ridiculous attitude is that there were many who went before me who fought a hell of a lot harder than I did and didn't make it . . . . were they not warriors because they didn't beat it!!!
All we have is today . . . I have and do what I can to take care of this disease that I have and being a healthcare professional, I feel blessed and humbled when I see the crosses others have had to bear. I only hope and pray that whatever the good Lord puts in front of me, I am able to find the courage to keep moving forward and if I can help someone else out along the way then "my journey was worth it".
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ShetlandPony, totally agree with what you said, and absolutely, NEAD doesn't mean you get to relax or let up on treatments and appointments and all of it. The rubble.
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The warriors are the ones who enter drug trials and put up with awful side effects or no results from placebo arm so years later, after they are gone, WE get the benefit of what the researchers learned through their sacrifice. I thank them for their willingness to help.
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Gosh, I am not that altruistic. I'm in a trial but I don't call myself a warrior and I don't feel I am making a sacrifice. I'm just a person who is trying to stay alive and mostly enjoy my life, paying the necessary price, and glad for what seems to be a win-win for myself and future patients, and the drug developer.
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Thank you all for sharing your thoughts, I wish I could put "love" to your posts! I have had these conversations with my hubby, and he agrees the labelling is off. He's ex military and knows what warrior means versus having a disease.
I also dislike the encouragement "I am so proud of you" for going through chemo - as if realistically I had another choice. I've tried to explain gently that just listening is the best support, but some have too much trouble to digest that I'm sick to pay attention to what I say, so I minimized contact. That includes the panicky/negative people (how pointing out that I'll never fully recover supports me, I have no clue), the "have you tried visualization" (as if it truly worked I could learn that skill in time for healing myself with a grade 3 tumor), the pity remarks (spare me please!), and the ones with a thousand questions (google it, that's what I do!). When it tires me, or upsets me, I handed the "updates" over to my husband. I learned that my older friends are a lot better in supporting, I guess it takes experience.
I am still me, but I have learned a lot: I've finally gotten much better in putting myself first. Again, I had no choice, but I hope to keep that attitude together with my scars and long lasting side effects. Oh, and asking for help - I took the offer of a therapist and I'm so glad I did.
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Just a reminder that it's not just "ladies" here - Traveltext, for one, speaks for, and to, most of us when he shares his experiences with breast cancer. Plus he and other male patients have uniquely difficult issues in getting diagnosed and receiving proper treatment.
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DogsNhorses- ...and the "you're so strong! UGH!! I/we had one of two choices: treatment or no treatment. I didn't want to have to chose to go through this. I don't feel strong!
Alice - thank you for the reminder; many, including myself, tend to forget at times that men too are diagnosed with bc.
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I am also really bothered when people say something like, "You lived so long because you love your kids". I saw a very moving documentary about a metastatic woman who had a baby and has stayed alive for seven years on just Tamoxifen. Someone in the audience said, "Your love for your child has kept you alive". I had to internally scream to keep from shouting, "So are you saying that my friends with young children who died didn't love their kids enough?"
I'm not a warrior against part of my body and cancer has not made me braver. I love my kids but that's not why I'm still alive. I'm alive first of all because I've been lucky and because I have a great medical team of conventional and alternative therapies
SP, I love your analogy of "Asthma Warrior"! Hilarious!
Hugs, Susan
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Haha, that was MochiPie who said she was not an "asthma warrior".
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Sometimes I'll (jokingly) call myself a hip replacement survivor. That replacement surgery and rehab was tough!
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Thanks AB. I used to correct the gender assumptions here, and it's only really an issue when I'm on a thread where I'm not known. When i found BCO after diagnosis seven years ago, there were quite a few bc men posting. Now there's really only me as far as I can ascertain. Unfortunately four men I knew have passed.
I think social media has taken away a lot of women and men from these pages. There's a Facebook page for every niche of the disease. In the U.S. there are around 2,600 men diagnosed each year. Those who want to share their stories come to the Male Breast Cancer Coalition website and I get asked to edit these. I must have read and edited a couple of hundred over the years, which is only a few percent of those diagnosed. I've realised that men are really embarrassed to have this disease and rarely engaging with other guys who could help them with the physical and psychological issues they have. That's too bad, but likely there's a bunch of women around them who can support them. I hope so.
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ceanna: love using the Richter scale for BC.
My cancer DX was definitely 8.0 or higher. Thought I was fine then everything fell over and broke. I am still trying to pick up the pieces and remnants of a former life.
Back to the warrior shit. I don't whine and express out loud my self pity but that does not make me brave. I am a private person, loathe to be too open . hate answering questions. "I'm doing okay" keeps folks quiet. Furthermore, when you tell people you are scared they say "Oh, you'll be fine. You are a fighter." Picking a fight in a biker bar is being brave and a fighter as well as being really really stupid. I am not fine. I'll never be fine.
I am sorry that male BC doesn't get the coverage it should. So much emphasis for women is that it is breasts (or more accurately in popular terms; boobs, titties, knockers) and all the focus on female anatomy and the attention that one body part gets. Our attractiveness, our self-confidence, our sense of sexuality are all wrapped up in those bumps poking out our T-shirts :-) So women are automatically sympathetic and understanding when BC befalls another woman. Traveltext, you are so welcome here. It isn't a girls' club We always say "our sisters", but we have our brothers, too.
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Love this thread! I am not a warrior or survivor. I am me and I have a shitty disease. Cancer sucks.
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I hate labels, but how's "booby-crapped"?
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Thanks for the laugh, SerenitySTAT! That's the one I'm going to use from here on.
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As posted on other threads, it's looking like I have uterine cancer. It is not 100%. But the emergency room doc phoned to say that I need to be seen NOW, not later, because things, according to my ultrasound and not just bad but VERY bad.
I am falling apart. I feel sucker punched. Serves me right for thinking it was okay to live again. This is my own fault. I had hope. Stupid me. BUt in talking with my friends most of them have allowed me to feel as shitty and rotten and terrified as I need. Only a few have given me the "you're a warrior, you're a fighter, you've got this, you are too stubborn to die." Stubborn people die every day. I have found it very hard to weather these platitudes in my current state of mind. My current state of mind is terror and grief. When I get the cheering squad it just makes me feel bad that I feel bad, like I have to be all hale and hearty, leading the troops into battle. Sorry. Feel more like laying down and letting the troops run over me, because that's what's going to happen no matter what I might hope.
I don't want to be a fighter. I want someone to save me. I want someone to tell me I don't have to be the one on the operating table. That I am excused from hearing the words 'you have cancer' for another time in my life. I want to throw in my hand and let someone else have my place at this shitty poker game, my cards suck! Maybe I have reason to be optimistic, but I can't see it right now.
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Runor - sooooo sorry to hear about this new uterine cancer possibility. I will hold you in my thoughts. Please do let us know how everything shakes out.
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runor, there is not much I can say. You are right. Your cards suck. You have every right to feel the way you are feeling. It really does stink. I'm so sorry that you've been hit with more crap. Just know that there are a lot of us here with you, holding you close, knowing how you feel and not expecting you to be a warrior or be all hale and hearty.
Remember that all you have to do is take one step at a time to keep moving forward. You will get through it. And then you can look back and rightfully be royally pissed about what you've gone through.
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Hey Rumor, I've had three cancers, four counting the low-grade skin ones (which my doctors seem to count) and I'm still here and chugging along, living my usual life. My arthritis affects me a heck of a lot more than those cancers did. It's all doable, no fun at the time, but definitely doable. And with endometrial/uterine cancer, it's a huge relief to have the surgery to stop the god-awful bleeding.
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Runor, crap I was hoping for a different result. This disease really stinks. We keep sacrificing body parts. Boobs, bones, teeth, uterus . Whatever else it wants. I don't know about you but it feels like my body betrays me sometimes. I am really sorry you are facing the beast again, in whatever form. We are all standing with you I hope you feel that. (((Hugs)))
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Alice and Rah, thank you. In the past week it has been the voices on this forum that have held the most wisdom and comfort for me. I have friends all around who are horrified and waiting to be told what I need, what they can do for me, and the answer is nothing. I feel so kicked in the teeth. It took so much out of me the first time around to get back to life, back out from the constant cloud of cancer. The fear, dread, despair and sorrow. And now this. I know there is the ever slightest chance that this is just an angry uterus, an abused uterus and not a cancerous uterus. But that hope is pretty much false. I've been all but told that when your ultrasound looks like mine, there is no way this is anything but cancer. At any rate, I want it out. I want my life back. Good luck with that.
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runor: my heart breaks for you. For the love of all things holy, don't blame yourself. In what way are you responsible? Believing you were okay is no sin. Believing you were okay did not make this crap happen. I have had the "you're a warrior, fighter" pep talk too. Friends mean well ----- but stop already! Your other friends just feel helpless in the face of your fear, grief and anger.
We need to be able gather together on some other plane and have a group hug. I guess this could be the "other plane"
HUGS
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