STEAM ROOM FOR ANGER
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BB~ most people have no clue and I agree with you about needing to have people around that know how i feel and can relate to what I go through. I have some isolation yes. I have my best friends (2) of them. My precious children (3) And a sweet loving DH that is always by my side. It's just a lonely disease, when all you can do is wait for it to take you away from your life and love of your family. It's very difficult to sit and fear the unknown of how you may suffer for the rest of whatever life you have. I've tried therapists. And it does nothing really. It's just the reality that I live. And for stage four. I have limited bone mets only no other involvement, but just the pain and constant feeling like I live in a haze with taking over 13 pills a day. Gross! We all have our battles. I just don't know if this one I am going to be able to pull out a win ! Prayers for all ~M~
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Hi Micmel,
I agree that most people have no clue as to what we are dealing with as MBC patients. My two wonderful sisters think that all is well since my hair came back and I am back at work though I still receive treatment every 3 weeks. That is always what bothers me about this disease: I don't look sick so everyone thinks I am fine. Yet, I live every minute of every day knowing that this will kill me and wondering what those end of days will be like. I try to stay positive, but sometimes it is so lonely to not really have anyone who understands. I have mentioned this in other posts, but my DH died very suddenly in April 2016 as I was having surgery to implant a rod in my femur to strengthen it. Talk about flailing in the wind! I spent a month in rehab and then moved into my mother's house (who had passed in February of 2016) as his son from his first marriage inherited the house. So, at 54 years old I was beginning a new reality without the love of my live and back in my childhood home. I am just rambling here and I am sorry for that...just happy to have a place to post my thoughts.
Hugs,
Nancy
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Now~ sounds like you're quite a fighter. Let everything out that needs to be let out. I have the same feelings. My hair is back. But i worry that i will loose it again! My bones ache then they don't , then They flare up and start hurting. Then it doesn't. It's enough to drive you crazy. Literally crazy. I am so so deeply sorry for your losses. There are no words to express such things. It sucks we are all stuck in the cancer syrup, barely able To move freely and fully live any kind of life or make any plans. You're not alone. It makes me so angry so many good people dealing with this! I'll never accept having cancer. And I know I'll never stop feeling so Angry! Robber!!! ~M~
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New and stupid experience incoming: So, I was at work today and forgot to do a couple of things. On the first one, I was told (reminded) after the fact to check this book (3 ring binder of info) and look all through it when I come in for my shift each and every blessed day. Still couldn't find reference because it was all in grey tone copy. Color would have helped because our screens are in color that it refers to. Manager finds it no time flat, of course, so makes me feel like an idiot. It was day one of this new thing and when I walked in I asked, "anything new?", no response. I swear, it doesn't feel like a team.
2nd one was a little worse and if task is not done, we get dinged. Months ago, I put an alarm on my phone to remind me to do this needed task whenever I'm working but I got reprimanded for not having it muted. Guess what??? Can't hear it cause it's muted and can't feel the vibration. I'd like to think it's my fault, but next time, I'll just do the task as soon as I come in, a few hours before the golden hour, but not an illegal move.
Again, idiot. There I was, day one of an itchy wig and trying to do my best. Trying to work more hours so I can do short term leave and go out with a bang.
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Micmel, Mystic, your stories, your pain and fear, this is what brings me to my knees over this whole cancer thing and if I am honest, truly honest, it's not the cancer that's so much the problem, it's the dying.
I don't want to die. I am afraid to die. I am torn with grief that I have to die. I think death is so stupid. So. Fucking . Stupid. We are born, we grow, we have babies or not, we craft lives, make an impact, be it big, be it small, love and are loved and then one day, poof, like a light bulb. Well, what kind of bullshit is that?!
I have lost people and I looked for them for a long time. After my dad died for years I thought I glimpsed the back of his head in a crowd, or recognized his shoulder as he rounded a corner, just out of sight. Out of reach. It was crucifying! And it made me mad. How can this be? Where is my dad? How can someone who impressed me in every way, starting with my very DNA and ending with the way I wave my hands when I talk. How can this vibrant, glowing, LIVING being just be gone? Forever? Bullshit. It's all bullshit.
And when I think about me being gone, missing out on everything that matters, I can't breathe. I can't breathe. I can't breathe.
I have always had a fear of death and once went to see a psychiatrist, a dull, beige, humourless man in a sweater vest (clue number one) who said I had to carry death with me, perched on my shoulder, as a friend. Quack.
But I think I am beginning to get it. In little glimpses I see something that has to make sense to me. HAS TO. It is critical and vital for the Task Of Dying. Whether I get there sooner or later it is a hurdle that I have to be ready for. So as people tell me 'to be positive' it is almost like they are telling me to postpone and ignore what is truly on my plate: dying. Once I have figured out how to die, I will be free to live. Does that make sense? I am trying to clarifying exactly what that means. If I am afraid to die, I am afraid to live. Fear of death is, for me, fear of truly living. If I hold onto life, I give death too much power. To take the power away from death, I have to be ready to face death. Then I will have my life back.
I know, crazy talk. But it's the struggle that I face now. The struggle that so many of us are in even deeper.
I hate HATE that all I can do for anyone is hear their words. All I can do here with this keyboard in front of me is wish to god I had something, anything comforting or wise or helpful to say. I don't. I've got nothing. Just a terror that robs me of sleep at night and joy all day. I HATE that this is what consumes my energy. I hate it for all of us.
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Runor~ honey if you're stage two darling. You are going to most likely get a lot of years darling. I realize I am going to be slowly dieing. I can color it any shade I want, but they have statistics for a reason. Albeit, hopefully way out of date stats, but stats all the same. I don't really talk to many people anymore that aren't my close dear friends, because they are clueless and if I am honest. I don't really like the idea of being someone's "ohh have you heard"? moment. I try to be strong. But I also don't want to die, I am afraid. Yes. But the fear comes from suffering for me. I don't want to leave my family. I just don't. I don't want them to hurt either, my DH and I are so happy and my kids are good sweet young people now. I am not ready to Leave them, or not see my grandchildren one day! I don't want the pain that I feel now. Of grieving, to be apart of their everyday life for a good while to come. Because as you pointed out. You're always searching even though you know what happened. I don't want them to feel what I feel now everyday always grieving for my Own death. How can someone be so cursed and so blessed at one time ? Am I just some grand experiment, with some dude poking at me with a stick, making me dodge the suffering of the poking stick. ? I feel like I have already had some part of me die already. The woman I used to be. I used to be beautiful, my hair was long. I had two breasts, a good life that I was finally happy with. I was content and found my place finally after 33 years of searching for where I belonged. Then 13 years after I find it! Wham! This happens. There is never going to be a time to where my Soul and heart aren't shattered anymore. I just want to love my family and grow old like normal people have. I don't think I am asking too much. I don't hurt anyone, I mind my business, take care of my shit, and don't ask anyone for anything. None of it makes any sense. I will obviously be forever angry that this has happened. Or forever sick! I can't get used to the fact that one day it will be my lightbulb that goes out. But who is throwing the switch ? 😡 f/u cancer. You're the one who deserves to die cancer. Bless you all ~M~
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Micmel, you are very right that as a stage two I am far off from your situation. But I think I'd be a fool not to prepare in advance. As if anyone can prepare for this! How do you prepare for death? I want to reach the point where I say yup, I'm good with that, ready to go, lived the good life and now it's time to shuffle off ... NOT THERE YET! In every word to be positive I hear, postpone your upcoming reality. And I've always been a get-'er- done kind of gal. Putting things off never works for me for very long.
Micmel, that was a powerful, raw piece of writing you composed. That needs to be shared with a wider audience. Too much cancer is crowds of people in pink t-shirts rowing or running, laughing and smiling, makes cancer look like a day at the beach. Such a lie. Such a sugar coated public portrayal. Where are the pictures that show the pain you just revealed? How do you communicate the aloneness and the deep, crippling sense of loss? The terror and grief that is torture? I think your piece of writing needs to go beyond this forum. I think your sentiments are shared by so many who suffer slowly.
Again, I wish, as does everyone here, that I had something to offer you. My prayers and my grief do little good. But I share them both on your behalf anyway. Love and hugs.
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Runor, Micmel...someone needs to collect all that we say into a book of essays.
I have tried to make my peace with death. I have gone to the "death cafes" with others to discuss the elements of dying. I have gone to preparatory classes and reviewed the stages of death and dying: anger, denial, bargaining, despair, acceptance so I could have a more positive experience.
Yeah...as if.
I even went out and bought my own urn, selected my niche in the mausoleum, picked out the music I want played at my service.
But it's not enough. How can one ever thoroughly prepare for this?
I am not ready to complete my Physicians Orders to withhold Life Sustaining Tx (POLST) yet. I'm afraid I'll jinx myself, even tho I know my time is running out.
And so I get a little weaker every day. I'm getting dizzier whenever I stand up. My head throbs. I see more spots in front of my eyes. Growing brain mets? Who knows? Who even cares at this point.
I just don't want to suffer for months on end, and I don’t want my beloved family to have to watch me suffer.
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Lita57 wrote - I just don't want to suffer for months on end, and I don't want my beloved family to have to watch me suffer.
That is the two things that bother me the most. Can we really make peace with dying? We can prepare and make plans, but we still have no control over how and when it happens. I'm pragmatic and a realist, but I am angry and just not ready to die.
I am 52 (for some reason I keep thinking 53), and I still have a hell of a lot of living I want to do. We have plans, and being dead will just mess them all up!
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Runor, my DH and I have been preparing for death, so to speak, going on 30 years now. We took out life insurance policies for each other and the kids. We also created an estate plan, so inheritance funds will be easy to access for survivors. We did this decades before I was diagnosed with cancer. Preparing for the inevitable is what everybody should do, regardless of health status.
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Agree. DH has had a transplant and since then been in renal failure 3 times now and other serious surgeries since then as well. We learned a lot time ago to get paperwork in order and make sure kids know where everything is as well. We learned when his parents passed away and we had to track down bank account information to help close estate. Everyone needs to know where all insurance and bank information is located. His grandma decided to distribute her "treasured items" to who she wanted to have them before she passed away which was good since none of the kids could fight over it as well. Like that idea as well and have already passed on a few things to kids already.
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Tamoxifen seems like an innocent drug but it gave my SIL GYN cancer. She tried a few different chemo treatments nothing worked now at age 54 she is gone. So mad, first she had a vey "treatable breast cancer" oncodx 14 er and pr positive premenopausal now she's gone from a second primary cancer. They keep saying individualized treatment but we are far from it. I wish they would stop patting themselves on the back and really understand what is happening. We shouldn't accept the words she fought a brave battle with cancer but she died of complications. She died because you weren't giving her an effective treatment. I am very angry.
She did everything her doctor told her, well I am listening to my gut instinct.
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Meow13, I am sorry to hear this. And it scares me.
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Yes, isn't that the irony of it all? All these Tx can actually give us ANOTHER form of cancer later on down the road. Die in a matter of months w/o Tx, or die a few years down the road from the Tx.
This is where we are in the 21st century. We can put computer chips in phones and have skinnier and skinnier lap tops, but still no cure for cancer.
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Meow...I'm so sorry about your SIL. That is so sad. We need to speak up for better treatment options!
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Her doctor immediately took her off tamoxifen when the tumor was found, that is all I know.
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I know that the MO I saw does not prescribe tamoxifen if you still have your uterus because of the risk of developing uterine cancer. Didn't go into it beyond that
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kathindc, what does your MO recommend for ER+, premenopausal women, who still have their uteruses, instead of tamoxifen? My understanding is that the only alternative would be ovarian suppression and an AL. That seems a little extreme without knowledge that one is at risk for uterine or ovarian cancer.
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Her doctor did say tamoxifen did increase her risk of getting the cancer. We think it caused her cancer no one can prove it. My point is to understand the risks.
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pupmom, I think there is a drug to put premenopausal women into menopause. The use of AI drugs are proving to be more effective. I had side effects but I think anastrozole really did protect me.
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I had already gone through menopause and still have my uterus so at that point she shut down that choice of therapy. At the time I was going to have a lumpectomy but over the course of that visit with her and a radiologist walking away from finishing a stereotactic biopsy because he felt he couldn't get the tissue and the fact that there was a spot in my other breast that they wanted to watch and have me come back for a look see six months later, I said the heck with it and went for a BMX with no further treatment. It's interesting that if tamoxifen can cause cancer in women who have gone through menopause couldn't there be a risk, even if it's ever so slight, for someone premenopausal. Our bodies aren't a one size fits all. For all the money thrown at BC research, you would think we would be further along in find cures for it
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You said it! Kathindc.
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I got the answer about Tamoxifen right here
"Women taking tamoxifen should be informed about the risks of endometrial proliferation, endometrial hyperplasia, endometrial cancer, and uterine sarcomas, and any abnormal vaginal bleeding, bloody vaginal discharge, staining, or spotting should be investigated."
https://www.acog.org/Resources-And-Publications/Co...
and
from this very website: "The breast cancer treatment tamoxifen (sometimes called by its brand name, Nolvadex) increases the risk of developing endometrial cancer, but not nearly enough to outweigh its benefits against breast cancer in most women."
http://www.breastcancer.org/treatment/side_effects...
The thing is, they don't tell us, or if they do, they do it very fast and try real quick to minimize any potential side effects. As Meow13 said, they just want to pat themselves on the shoulder for getting us rid of breast cancer, and to Hell with our quality of life or what happens down the road.
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Seachain - like!
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The risk of getting uterine or endo cancer is very low. From what I understand, if you are high risk and pre-meno that they also want to save the AI in case for the future to put more tools in your arsenol. In my case, AI was far more debilitating from head to toe. With my profile and being high risk and the very low chance of uterine/endo cancer, I'm more than willing to take my chances.
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Artista, I got osteoarthritis so severe from the AIs that I got spinal cord compression.
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Cancer sucks. It mentally cripples you even if it doesn't physically and to many it does both. It affects your loved ones and sometimes you find out who really are your friends and family when they don't run. It sucks, it needs to be eradicated.
I was good with life before, I did not need this to appreciate life even more...I don't see it as a "gift" as some say. That's just me. Just like they say money can't buy happiness,,,well I'd sure like the opportunity to try! Yet that one has not arrived.
I know I could have it worse. The anxiety of it can cripple. Can make you feel lonely. Who understands it unless they have been through it. The less that know about my dx the better I think. I want people to still see me, not my dx.
There's no rhyme or reason. Just plain SUCKS!!!!
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I agree with this Hallmark idea that somehow the 'gift of cancer' will endown me with gracious life appreciation, wisdom, smiling tolerance and forgiveness, blah, blah, blah. Often I look at a moment I'm in, view the people, the setting, the feeling of the weather and I think, this is all going to be taken away. And I do not 'savour' the moment. Instead I am floored, completely flattened out with a sense of grief and panic and despair to crippling that that alone can kill a person.
I also resent the word 'fight'. This isn't a fight. "She lost the battle" I want to puke when I hear those words. We ALL lose the battle eventually and not every person who dies is said to have 'lost the battle'. So why does cancer get singled out to imply that the people who die from it have somehow failed? Didn't fight hard enough, long enough or right enough. The word FIGHT implies two equal opponents in a ring. This is not that. This is a big monster brute (cancer) stepping out of the crowd and sucker punching some dweeb (me) right in the head. This is an assault. I just hope I pull through. But fight? Nope, sorry, this was an attack. Not the same. I never put up a fight, never saw it coming, just doing what I can to stay alive and hoping it works. I don't feel victorious, like Rocky bouncing around the boxing ring. No. I feel attacked and unsafe in a world that I used to feel much more confident in.
Yes, beach2beach, cancer sucks that feeling of invincibility and stability right out of your life. I think any diagnosis of a disease that you're not going to recover from does the same. I find I'm getting tired of people asking me how I am? There is no short, simple answer to that. I am trying to live a normal life knowing I may not be here a year, 3 years, 7 years from now. I was 27 when my dad died of bone cancer and I was not ready to lose him and some days have missed him so much it hurts to breathe. Now I look at my own daughter who just turned 25 and find myself asking, how old will she be when she loses her mother? My brain dwells in morbid, black places. Then I have to suck it up and get on with pretending everything is normal. But when people ask how I am I do not say, " I am tied to a train track, we know the train is coming, we've heard the whistle and seen the steam rising from the stack, now I'm just waiting for it to run me over entirely and cut me in half but really, other than that, I pretend to be fine. So, yeah, I'm fine, I'm great. My boob has healed from surgery and radiation mostly, I'm taking my Tamoxifen and still tied to the train track. But I'm fine. I'm fine. I'm fine."
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I know was on Tamox for 5 years and now on Femara instead for 5 more. MO said Tamox SE can kill you and moved me off to the AI instead. Of course now those SE are kicking me but he said they won't kill me. That's what he thinks. Losing my mind is losing my mind and might as well not be there if you can't concentrate sometimes.
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Runor...as St 4 person, I feel like my body is Hiroshima, and cancer just dropped an atom bomb on me.
There will be no survivors.
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