My Husband, My Life, My Love, My Family, My Cancer
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I am at a loss for words. So much heartbreak here. I am sorry for all of it.
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I’m so very sorry to learn the news of Lynne’s passing. My deepest condolensces to her family and loved ones.
It’s hard for us here, too, yet I’m grateful we have each other for support; the loss of sisters unfortunately comes with the territory due to the reason we’ve found each other.
Here’s a poem that I read from time to time that brings me some comfort, and it makes me think of all of you, all of us.
Our Lives Matter
by M. Maureen Killoran
We come together from the diversity of our grieving,
to gather in the warmth of this community
giving stubborn witness to our belief that
in times of sadness, there is room for laughter.
In times of darkness, there always will be light.
May we hold fast to the conviction
that what we do with our lives matters
and that a caring world is possible after all.
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Divine, such beautiful words! Simple and true. Micmel, sorry for the loss of your grandmother.0
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Divine~Hello lovely. Always love seeing you. Hoping all is well and you're warming up the porch for some sitting and tea soon. Beautiful words said for a beautiful friend and woman.
Lynnwood~ thank you very much. 94 is a pretty darn good life. In her life she wasn't the nicest woman. To anyone really. It's a shame. I'm sure she also died lonely. Her only son was in the hospital having surgery the afternoon she died. No one was with her. My mother lives in another state and her legs are bad and she had shattered her elbow two years ago and hasn't been the same since. My entire family is riddled with holes and estrangements. Good to see you too sweet friend. Hope you're well.
Much love ~M~
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Micmel Sorry to hear about your gramma 94 is a nice old age. I hope you are having a fruitful day.
Waiting for treatment thinking of all my MBC crew here with me in my pocket and all I have is mixed nuts.
As much as we share here I don’t know if others truly get who we are. I was listening to one of those ads which I guess are aimed at us MBC people and they describe us as “relentless”. Wow so appealing (sarcasm) like now I want that disease so I can have that medicine and be relentless too??? I think my feelings are too raw because of the recent losses and progressions.
Have a good day all.
Tanya
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i will absolutely admit I am a little nutty!! Hang in there Tanya. There is nothing we can do about it. Just be here and support each other. Those ads suck no matter what. I turn the channel. Or don't pickup brochures! I'll be more quiet crunching on the nuts! Love you sweet friend
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Tanya, I cringe when the relentless commercial comes on. All of us know that what is relentless is this horrible disease that is killing us. Whenever it comes on I look at my husband and say “ Look, I’m relentless, it says so on TV!” If we don’t laugh sometimes we will cry. I went through my friends list on Facebook today and had to delete 11 friends that have died. I said a little prayer for each one that they will Rest In Peace and that we will someday find a cure.0
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I agree with you about the commercials...they are direct-to-consumer ads so they use a message they think will hook the attention of a new patient, who will then go to the doctor asking about the medication.
I especially love the Neulasta ads...I had Neulasta 3 times after stage 3 BC Taxotere cycles...I didn't look anything like those people in the commercials...I had no hair, was emaciated, was on anti-anxiety meds just to make it into the clinic appointments.
The commercial producers cannot possibly show what it is really like for us because no one would want to come anywhere close to that medication...not defending them. Just seeing the reality before me/us. Look away, change the channel, move to a different room, anything to not feel contempt at those commercials and fake patients...life is too short to hand over any energy or time to them. We need to spend our time as happily and rewardingly as possible.
I know...preaching to the choir
Gumdoctor
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Every time I see the letters form. “Whatever time we have left or I have left" slams me so hard and it probably does you ladies and gentleman as well. My stomach sinks and I sit and think about how the heck this has happened. ? I am going to be 49 in May. Never in my wildest dreams could I have imagined stage four breast cancer. Not stage one ever. No stage two for you... sorry keep moving past stage three even. Advance ahead little Lamb. Stage four for you.
Wow it's been over three years and I still cannot comprehend or accept what has happened. It's almost like that movie 50 dates. I wake up everyday and have to reaccept I'll Never be the same. I have to remember everytime my eyes open. Hey you have cancer. And it's bad. Every single day that is difficult. Sleep is peaceful. Mostly. But that first opening of the eyes. It is just there. Always. It never leaves. I can hide it for a time period. But it's the grim reaper with his sickle that is my shadow when I'm in the sunshine. Cancer not only destroys our bodies.....it destroys our minds , emotions,and our souls. I hate you cancer. For taking so many and for making our life a living hell!
It's maddening....and heart gutting all in one. Like a twister of emotional pain and physical torture that swooped up on us and sucked us up into its tunnel, while everyone else had clear skies and birds chirping. We heard bells and wheels from the carts they to use bring us our injections that bring us another layer of Hell. We smell smells that haunt us... we do things like cross off or delete people from our contacts because cancer took them. We cry silently in our beds alone fearing every scan mention or even a blood test for fear we will have to go through a “new-new" normal yet again. When weare forced to try something else. Find the damned cure people! Enough loss already. When will there be enough money? Ever?? I sincerely know....the loss is way enough.
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Micmel,
I am sorry sorry if my words upset you. I hope you know it is not intentional.
All the things you wrote I painfully can relate to also.
I will watch what I write even more than I already do.
Gumdoctor
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omg. Not even close honey. The medical team talks likes that because it’s the truth. I don’t ever want anyone to watch what is said here ever. That’s why it’s a place to let it out. Whatever it may be! I love the honesty. It helps me be a better partner and mother.. so don’t ever apologize for feelings and expressing what you’re feeling. ❤️
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speaking of commercial ads. I hate the new normal that shows people doing things I'll never do again as if I'm deciding to live my life a different way by choice. Argh!!! I thought I was the only one not enjoying the new normal.
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Micmel, that is exactly how I feel. Not for a day have I been the same person I was eight years ago when I was diagnosed de novo, It's just not possible. And I miss so much about my life before BC. I'm happy to still be here, but most of the time life just isn't fun anymore. And I still mourn for my old self. In that aspect, I think we stage 4 sisters are all the same.
Sunset
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I can understand the irritation at the commercials for mbc meds. I take it in stride because all commercials are somewhat ridiculous and unrealistic. Who gets excited over toilet paper? Little kids? And there's a commercial with a hugely smiling nurse educating senior citizens about Medicare. Her scrubs are perfect, her hair and teeth are, too. No sign of weariness on this woman's face. No one is that perky explaining medical costs.
Oh, and the commercials for contraception. Always young, beautiful women with terrific wardrobes, because you know, they're the only ones having sex. I think, if you show a mom with some post-pregnancy weight gain, dirty hair and t-shirt trying to feed three kids fighting with each otheraround the supper table while her husband sits in the living room drinking a beer, you'd probably sell a hell of a lot more birth control!
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I saw a video of Olivia Newton John..today ....it was an interview about her MBC......she was discussing her life and how thankful she was to be living. She was all smiles, and camera ready... don't get me wrong I really like her. God knows she understands. What it is like worrying. The thing I can't grasp.... or understand at all, or what I'm lacking in my ability... dealing with this disease. She says things like I'm happy for this extra time she's been given. Like we all were born with-a contract attached to our asses that says on this day this will happen and you will be granted more time than you would have ordinarily?? Um no.. I've been cheated. Of many many years. The only thing I'm thankful for is my dear sweet family my home and here anymore. My doctors of course, but they scare me as well. When we see them it's not smiles in my own clinic named after me, where I am brought in The Back cloaked in privacy. Everyone saw my bald ass head. Everyone sees me for real. Not camera ready. No perfect fitting clothing.. i have uneven breasts. One time shot with Medicare. Scars inside from head to toe and a mind filled with worry of how to pay for my next round of Ibrance..... even though she does have MBC like us... she's not like us, we don't have hired help to cook the perfect diet for us, nor can we hire a nutritionistalist for listings and recommendations.on what to eat or not to? We do our laundry, we cook our meals. Or the people we love do.. we don't get driven to appointments. Sometimes we have to drive ourself and pull over dizzy and puking out of our car door.
Although I hope that she will get out the word. And more attention and more funds will be allowed for MBC and hopefully a cure. But when we sit in our homes we are afraid of leaving, as she is too I am sure. I don't have my own team on hand to excerise me, in my home or research for me, clean the house from top to bottom, I don't have a research facility donated in my name. But I have cancer all the same. We are no different from her or any celebrity with cancer.
Just like this insulting college scheme who cheated many young adults of the chance to go to colllege, on real merit. Just because you have money. Doesn't make you any different when your fighting for your life. Some of us just don't have millions laying around to have hired help 24 hours a day.... or a team for make up along with a wardrobe team to make me look my best. I have no eye brows. I finally have hair. But watching that and how positive she wants everyone to be in the face of this disease and “Thrive". I thought I was thriving before I found the lump.. then my world exploded. And so did my families world. DH became my lover and my caretaker. Except in a way different order. My kids felt real terror. My mother cried, it's been a rough 3 years. I don't think the word Thrive has once entered my mind......am I the only one here that feels this way? How can I be a shiny happy person.? When I'm really very angry. Destroyed. As a woman and a person, mother, daughter trying to take care of my dyigndad as much as I can. I don't recognize this world I am in. I recognize my family and my home. But when I step outside. I feel so gone. Empty. Alone. And like a robot doing what I HAVE to do... 🥺💔
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oh, micee, you have every right to be angry. I think Olivia N John is angry too. She's just hiding it. Cancer doesn't care how much money you have. We are all in the same relative boat. That said, wealthy people do have better access to better care and I do believe, in some cases, get to live longer than if they were, say... on medicare. BUT it's not like the wealthy are being cured and the rest if us arent. They are dying too. Also, I hate the word thriving. You are so right. I was thriving before BC. Now I'm just surviving best I can. I love how you express yourself. We all need to be more open about how this disease eats away at our minds and our lives as much as it does our bodies.
Sunset
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Micmel,
No you are not alone.
I wrote several texts to catch up a close friend yesterday. All the topics were negative. Then I apologized for telling her so much and that my intention was not to upset her...then told her there are a small number of people I am close to and I want and need them to know what I am REALLY dealing with. To quote myself to her, "the pretty, polished, inspiring survivor story is great but it is not what I experience every day."
This very special friend is like the daughter I never had and she gets it. My dear husband gets it as much as he can.
Many others need to see and hear the pretty, inspiring survivor story from me. Rather than lie or be inauthentic, I avoid contact as much as possible.
YOU ARE NOT ALONE. WE get it and are here for you.
Gumdoctor
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Just to give you an example of what I am facing...and this is really the most in-my-face thing right now...the US Army is threatening to discharge me with zero benefits in August 2019. Zero benefits means NO INSURANCE, NO DISABILITY, NO MEDICAL RETIREMENT.
At the same time, the people who are supposed to be helping me fight this are telling me not to worry about it...
Easy to live with someone else's troubles eh?
The only way I can cope with this, in a healthy way, is to keep remembering God is in charge of all this, NOT the people who wrote these insane, horrible rules or the ones who talk to me with no earthly idea how much their words cut me to the core.
A civilian Army nurse case manager stood in our living room with a clipboard, all matter-of-fact....looked right at me....and said, "I hate bringing up bad things but where is it you want to die?...What's that address?" As she hurriedly wrote down the answers I gave her.
We just have to keep grasping every moment of happiness we can and not give an inch to others who do not understand or who intentionally or unintentionally take away what little we have left...
All this in my humble opinion...
Gumdoctor
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the best I ever am is OK. I never say I'm doing great. I might say I'm doing good, but I haven't said that lately because I'm not really. I hate to be inauthentic, and I'm over that telling people what they want to hear bullshit. One friend asked if I was feeling good. I told her "oh, I never really feel good". I wasn't looking for pity, just answering my truth. She looked like I slapped her across the face. Sawry! NOT
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Celebrities with breast cancer, whether metastatic or not, can be hard to take. They worry about their image and their brand. Their public persona. We don’t live in their world. Theirs is a different reality. As you said, Micmel, are they worried about making the house payment or how they’re going to buy their meds? I don’t begrudge them their fortune and fame, and I feel badly that anyone would have to learn they have breast cancer, but I don’t want perky platitudes of inspiration from them. Too many of them seem to use the diagnosis to raise their celebrity status.
Julia Louis-Dreyfuss was one of the very few who, after a bc diagnosis, didn’t immediately jump on the pink bandwagon with her megaphone and cheerleading pompoms, and I appreciated that.
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“But when I step outside. I feel so gone. Empty. Alone. And like a robot doing what I HAVE to do...“
That’s exactly how I’m feeling today. I didn’t even venture outside, maybe tonight when it’s dark, I’ll go get the mail. I did shower, just cuz I didn’t yesterday. 😭 I hope tomorrow will be better.
Suzy
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Yes,I, too, get it. Today seems to be a collective bad day. I do suffer from extreme fatigue at the end of my treatment cycle, when my blood is low. But today, I am fatigued, not only from cancer treatment but also from keeping up the facade of how “great" I'm doing. Some days, like today, I just stay in, because I just can't fake the smile
Thank God I'll have a tomorrow.
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It's in the middle of this very horrible month for me and I can relate to what you all are saying. The only reason that I don't think of the BC 24/7, is that the pain is too great still from loosing my son. That is always my first thought, the second being that I couldn't save him, and then the guilt from that. Also the guilt that I am not fully present for my husband and two other kids, who deserve so much more from me. But I don't have the energy,especially right after a chemo treatment when I can actually sleep 17 hours a day. Friends don't understand, so I avoid them. I like being in my own safe place at home, and it takes a lot for me to go out except for doctor appts. Do I try? Somewhat. There are days when I can function a little better, but when I have a little energy, that is when I have to devote time to cleaning and just keeping up with life's tasks. I don't have enough energy to do more than that, particularly socializing. I want to be upbeat, but when I see those ads about being relentless, I don't turn them off, I loudly yell "F*&#k you" to those unrealistic women. It makes me feel a little better, and then I think, what have I become? Yelling at the TV? But what the hell, anything goes these days.
Tomorrow, March 13 is the worst day of the year. March 13, 2013 was when I was diagnosed, and then 4 years later on March 13, 2017, we lost our precious, amazing son.
The four of us will honor him by driving out to the desert where there is an awesome bloom this year because of the rain we have had. Seeing color spring from the dry desert is life affirming. I have to be open to that. I want to know that there will be better days ahead. After losing James, I stopped praying. But that doesn't mean that I am not thinking of all the wonderful ladies (and men) on this board. Thank you for sharing, and thanks for letting me share.
Donna
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Days like today remind me when I only cared about beating cancer and be damned with QoL. How things have changed. If cancer doesn’t outright get you all it has to do is wait because it is ever tiring to have. My best friend and soul sister bought me this meditation book when I was first diagnosed. It may not be everyone’s cup of tea due to the use of expletives. I think it’s an awesome book. Below are some pictures, but I didn’t want to give too much away in respect to the author.
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Abeautifulsunset~You're 100% correct when you mentioned that they are dying from it also. That is a very true fact and I would never mean to diminish anyone with cancer, any cancer. Or any illness for that matter. I just don't think that thriving is a word I would use when I discuss my MBC. But she is totally valid in what she feels and how she chooses to see it. I just felt I could not relate to her. I know sometimes I can get raw (I think I get it from Runor=good thing) but I just want this place to be a place you can share anything The awesome thing about here is, it is nonjudgmental friendship Sometimes I desperately need someone else’s point of view And understanding or experiences. It helps me a lot to keep my noggin on straight!
Gum doctor~The words i would like to use about what your post said about the way you are being treated by the US army, are in no way ladylike and I could be banned from here, but WTF???? How is that even possible? Or even legal? I'd be on the phone with any representative that would listen. Television stations. Radio stations newspapers. Anything I could do to Bring awareness to what is happening to you. I am both sickened and appalled that is even a problem you would ever have to deal with. That is plain crap!!!!!! Ombudsman?? Anyone ? I'll be thinking about you and honestly sending good thoughts your way. That's just a steaming pile of shit that right there is.
Divine~ it really is hard to take. When they sit there in their million dollar homes with so much help and property, it makes them seem less human, less humbled about the disease. When she mentioned that she went for her treatment in Brisbane, to her own named hospital and how the staff kept her cloaked and hidden for privacy. Did I want my bald head on display? Not really .... did I want my own room to be alone and rest and not be on display... absolfreakingloutely I did. It's just things like that that are hard to swallow, when we are all knocked down so hard to even get up to begin to fight.
Stilllivin~It's been happening a lot to me. I don't want to go anywhere I don't absolutely have to. When I do go out I switch auto pilot and I push myself. Just like I will again tomorrow.. to deliver my dads clean laundry and visit with him. That is also very stressful in my heart. Always good to see you.
Kayla~ welcome darling to our home! I am so totally with you, about the faking the smile crap. If you don't then you hear things like you're negative and you need a positive attitude. Well I'm positive I'm about to kick your ass so move along mister or misses ray of sunshine. Just leave me alone. I don't bother anyone. Please do not make me feel like I have to waste what little emotional energy I have on tap that day ,to make you feel better about me being sick. It happens to me so much. I end up being the one reassuring the person I'm even talking to, which exhausts me even more!! Ugh circle circle ⭕️. It's what we do now!
Donna~ sweet Donna. Nothing and even MBC cannot compare to loosing a child. My heart bleeds for you and your family. I am deeply sorry for even complaining about anything knowing the load you're carrying on top of your shoulders. It's just plain not fair and I can't even
form any sentence that would even compare with such an emotionally difficult thing. I am deeply sorry from the bottom of my soul that you have and still are suffering. No words I can offer can remove your pain. But i hope you know I needed to hear exactly what you said. It brings me down some and puts me back in line. I get so upset that this has happened to our family, but when you share the pain you're going through. I just want to thank you for choosing us to share it with. I know it can't be easy. You helped me get my mind organized and see another side and hear another sister who's struggling in such a way i cannot fathom. So dear sister I'm so very sorry for your loss. may March be over soon for you!
Love to al
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Parry~My kind of book. If those words don't apply to cancer I don't know what word would ! Loving that book! Why am I not surprised, that you have an awesome book like that. It just. Seems fitting. Goes along with your fierce spirit that I love!!!
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Aww shucks thx Micmel. It’s not only a funny little book, but it does help and is written pretty well I think
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I’m tired from a very big, delicious meal but wanted to add my oddball perspective to the subject of dealing with MBC. In 2006, I was in a rollover car accident that I knew the moment before impact was going to end my life. I was shocked to have opened my eyes, up side down and in the dark to crawl out the shattered passenger window and walk away with nothing more than a bruised hand/hip and totaled car. Every day since 1/11/06 is bonus time and yes cancer totally sucks but I am so incredibly lucky for all the people who care, the things that make my life easier and the optimism that I’ve always had.
I understand it’s not like this for everyone, I wish no one had all the extra crap piled on.
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Thank you all for sharing and in turn welcoming me to be comfortable in sharing too. I read this thread often and am truly inspired. It teaches me that I’m not dying from but rather living with this disease. My new perspective on “living” is actually amazing most of the time and maybe, soon, I’ll be able to articulate it; I just can’t find the words yet.
Donnabelle, thank you for reminding me that there are others grieving on a most profound level. I will lift you and your family up tomorrow as you honour James, May your memories be filled with love and joy.
Good night all
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Hi Daniel and Leslie, Gabriel is a super Pirate! Hope your Carnaval was brilliant. Our local city Carnaval is amazing. 5 hour long parade!! Love to you all x
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