STEAM ROOM FOR ANGER
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I thought I knew what fatigue was until I had it and needed an iron infusion. People just don't know what fatigue really is until it hits them. I told my MO for months how I felt but until my labs hit rock bottom, he just listenefd and said being tired goes with chemo. I wasn't feckin' tired ... I am fatigued. It was't chemo brain, it is fatigue. It isn't anxiety, it is fatigue.
Oh ... And please do not tell me "you've done so well." I hate hearing that.
I hate hearing how great my hair looks. I don't like the way I look. I don't even know who that grey haired women in the mirror is.
Sometime I'd jus trike to look at people who say these things that piss me off and say "F off A-hole."
I feel better. Thank you.
Coach Vicky
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Vicky~ I feel all the same things you just mentioned, right down to the mirror. I understand the way your heart feels when you realize in that mirror it's you staring back. I am with you in that mirror,you're not alone. I hate how I am now. A road map for a front and an ass that keeps getting bigger, oh my onc says that's good. That means your body is fighting this. Uh doc no! It means cancer I swear is making me fat. Which I was always told was un healthy, so now it's ok? I was never fat. Was never out of shape. I'm disgusted!! I want my breast back, I want my long beautiful hair back and I want my liver scar to go away, I never realized how happy I was with who I was before. Like I've always said. Why do we have to live life forward , but we can only learn backwards. It makes no sense. I was like a tank, solid muscle, no fat , toned and athletic. Ran over 30 miles a week. Now I fight to jog a half hour, and in between I have to wog. (Mix between jog and walk) after that I have to escape to my bed for an hour to sweat like a hog, then my feet hurt from the neuropathy,a parting gift from the heavy chemo, that almost felt like it killed me anyway. I also hate the comments you got this and look at your hair!!! I actually had someone say to me ohhhhh....why did you cut your hair??? Excuse me what? You know I had cancer., why the fuc* would you ever ever say that to me ? No wonder I don't like to go out of the house. I'm embarrassed. I can't wear normal clothing yet, I need to find something to house this foob. And I can't wear normal sandals. My feet hurt way to much without adequate support. None of my old clothes fit and i refuse to buy new ones because then I'm accepting who I've become. If it wasn't for my family, I would have thrown in the towel on the horrible day of diagnosis. When I went from stage two, to stage four in two weeks. Do not pass go! Do not keep your hair, do not keep what makes you a woman. Although my stage four was crazy and I was lucky to have my stage reset to stage IIIa. I am stage four and we all know it Doc. The cancer spread and I know what that means. It means my life sucks ass now. It means that part of me has already died. Isn't that what you're really saying DOC??? ~M~
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Micmel
You gave me a great gift with what you wrote inyour reply. I feel almost normal when I read your reply and not like I am ungrateful or crazy.
I have learned not to bitch so much at myself after having cancer. I hear people complain about stuff and I think if your only knew ... If you only knew.
Yes, people make shi**y comments. The day of my breasts amupations (Yes, that it what happened!) this radiologist that put the dye for my lymph testing around my soon to be gone precious nipples smiled afterwards and wished me good day. The nurses and I just looked at each other Like "what a bitch."
C Vicky
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you're most certainly not alone at all. There are many of us here. That's why this is agreat place for support and to let it all out. Hugs ~M~
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Micmel, your post made my heart hurt and made me realize that as much as I wish to god I had something, anything, to say to help you, I've got nothing. In the face of this cancer crap, what might very well be a life ending event. what DO you say to someone? Tears came into my eyes and the keyboard got blurry because I know you're mad, know WHY you're mad and know that, just as you say, so many people DO NOT GET IT.
Since being diagnosed there have been so many horrible feelings to deal with. Terror and crippling grief among them. Soon I can add crushing physical symptoms too. And while we might not be alone in our houses while we go through this, we are very much alone in our heads.
I tried to explain to Hub that terrifying feeling of separation that occurred when I first heard. I used to think of myself as part of the human race, same as everyone else. And then it's like a wave swept in and sucked me off my happy little beach, off my spot on the sand, leaving behind my book and suntan lotion and friends. They are all back there basking in the heat, relaxing, drinking. And me? I have been sucked way out to sea. I am screaming and flailing, but no one can hear me. Now and then people glance my way but they don't seem able to save me. There are others flailing around me and they KNOW my terror and SHARE my panic, but none of them can save me either. Some of us will make it to shore. Some of us won't. But we all know something that we didn't before : That happy little life on the beach is happy because it is ignorant. Those people think they are safe. They do not have to be aware of that big ,sucking wave. They think it will never happen to them. NEWS FLASH! It can happen to us all.
And if we DO make it back to shore, for a long time or short time, we will NEVER sit there on the beach relaxed and unaware. Oh, that happy delusion has been ripped from us forever. We KNOW. We may do our best to be a beach person again, but we will ALWAYS have our eye on that ocean where that wave roared in and tried to drown us. And we will look out knowing that the water is FULL of people fighting to keep their heads above while most of the beachers don't even see them. But we see them. We know the feeling. We have been the drowning. And there is nothing we can do to help but see. We can observe, witness, respect and acknowledge that terror and agony and crushing, crushing sadness. The most we can offer to anyone else going through this is to tell them they are not invisible. Yet it's so not enough. I am surrounded by people who care, yet care does not change the physical situation. I no longer feel part of the human race. I feel set aside, separated, removed, isolated and alone.
Micmel, those to whom it has never happened, will never get it. They can't. They just can't. It's a foreign language to them. So when they do try to speak, often they say the wrong thing.
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I realize no one is perfect and no one knows what to say that could even come close to making me or us feel safe again. I live on edge, there is no peace, the rug has been pulled out from under us all. It's just plain scary. I realize that people have accidents everyday and never come home. The horror that is, it happened To my neighbor, boom husband gone, one son Who was 4, and 6 months pregnant and he just doesn't come home again. I can say that most people Do not know about their death and never see it coming. I don't know which is worse honestly. Because I am afraid I do see it coming, or should I say I know how. I love my DH more then I have ever known possible to whole heartedly love someone unselfishness beyond imagination. Complete one sweet fairy tale love. Of course the only thing that could ever come near our love was death. And now look..... for quite sometime I felt this horrible feeling inside that something bad was going to happen. Deep inside I knew something was a foot, but I didn't know what it was , or who it would deal with. It was me. It was my subconscious knowing or sensing something was coming. It felt like a feeling of fear that I couldn't shake and I had no real reason to feel that way. I was running daily 6 miles or more weight lifting free weights. The best shape of my life. Then, bring In your analogy of the beach scene with everything of yours being left behind. I know that terror. I feel it with every other emotion. I also know that for now the medicine is working and I have to hold onto my sweet husband, and family like hell and never let go. I have never hurt anyone or been a bad person. Never smoked or drank even,no drugs. Wasn't my thing. And look at me now. And unrecognizable shadow of what I used to be. Such pain,aches exhaustion, they do not call it a battle for nothing, I prefer a war!!But as I look next to me, there is my precious DH, giving me the same looks and smiles and still tries to trip me as I walk by. I don't know how I could be so blessed and so cursed at the same time. To have this awful disease, but to know i am deeply loved as I am loving him. He is my world , my love my life. And just in spite of that. I am never giving up ever. I am swimming back to shore. And you are coming with me !!!! Hugs ~M~
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B"H
Have been following this thread for quite a while... I can honestly say that though we have never met - I love you all deeply and am holding your hands through all this because the heart breaks...
I have also been traumitized since my DX by friends just not being there for me... and totally frustrated because they actually believe they have been there for me which is mostly a "joke"... and this suggestion that they just dont get it - I keep thinking, all they have to do is go online and read in any of many sites what a BC patient goes through and how they feel... then even if they can't feel it deeply they would have an idea of what not to say and understand how much support and smiles we need...
But today something happened - I was by the entrance to the Oncology Building at the hospital, and someone passed by whom I know from my neighborhood and community... we aren't friends, but we know eachother... and he stopped in his tracks and said "What are you doing here?".... if anyone else would have asked that I don't know what I would have done, but I do know he has two daughters in their young twenties who have both been DX with BC, and I saw the look on his face... saw the concern, the sadness in his eyes as he said "You too?"....
and it finally really hit me, what runor says here: Micmel, those to whom it has never happened, will never get it. They can't. They just can't. It's a foreign language to them...
i finally realized when I saw that man's eyes, that truly only one who has been through this can have a true understanding and sense of empathy ... that I must put away my anger and frustration, because my friends and family really can't "get it"... and I guess too, that it is true that once they hear treatment is over they "decide" eveything is "back to normal" because out of their caring they really want to believe that is true...
For us there really is no "back to normal" no matter the details of the DX, but we can try to focus on what good we can take from all this... and to appreciate with great intensity the love we receive from those who go beyond themselves to give with a FULL heart even if they haven't been through it themselves, to see US and not their own needs ...
I am certainly not belittling anyone's anger\hurt\frustration, this is really a hard road to travel and it is amazing how insensitive and selfish people can be... one of the things that really crushed me, was that even a very close friend who had had BC more or less disappeared on me... but still... I just wanted to put out here what happened to me today, to say I am hoping that I can rid myself of a lot of anger that is not helping me in any way and make room in my life and heart for things positive and loving....
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Hello ladies. This isn't angry venting but some feelings of sadness. I feel like I'm writing to my sisters. I can say what I want and you understand it. It' s a family. I don't know if that's weird but that's how I feel. I'm sending a hug to anyone reading.
I talk to my mom a lot but I feel guilty sharing my anxieties with her. She's stage IV and although our breast cancer and treatments are different, we understand each other. Mine is triple negative, mom's cancer is ER+/PR+/HER2-. It saddens me that she calls and asks what could she do for me. She wants to keep giving and caring for her children.
She's 76, widowed and already lost a daughter, my oldest sister, to bc 20 years ago. But she means it when she says, "I'll do whatever I can for you!" I'm so happy I was with her for most of her appointments and treatment this past year. Before this year, I was one of the only siblings who lived near mom. We saw each other a lot! Now I'm too tired to drive the two hours down each week as before. And mom's too tired to ride in a car with anyone more than 20-30 minutes.
Her pain and exhaustion keeps her at home. I miss seeing her more. But we talk daily. Now I'm so busy with my own battle I'm hoping it doesn't get her too stressed. I know how much I love my boys so I can imagine her wanting to somehow fix it all for me. I'm sure it's hurting her to know another child of hers is fighting this disease. I try to hold back but she can tell when I am. A mom knows, huh? It does feel good that we can relate and listen to each other. I just hate it for her.
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What really has cut me to the bone is the fact that two women at my church who have dealt with lymphoma and are "no longer in treatment," have pretty much SHUNNED ME because I have Stage 4 metastatic. No phone calls, no cards...heck i dont expect any of that, but to see me standing there during coffe hour and literally turn and walk away?
WTF? You'd think they of all people would "get" it, but I guess I'm a walking reminder that there sh#$ could come back any day, and they could become me...standing on death row, fighting growing metastases.
And my cancer is progressing. I have no one but you dear ladies to get me thru this. This WILL KILL ME, or some other opportunistic infection because my blood counts plummet on cycle weeks. I've tried to reframe my active "dying" as "transitioning home to eternity," but that's not going to make my family feel any better when I'm gone.
How I hate this.
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The exhaustion can make it hard to get out of bed but the aches of the bones makes it hard to stay in bed. The weight gain makes you feel fat. Docs tell you can't lose weight because of the meds.....never ending cycle..........
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Lita~you're not alone, no you're not. I am also stage four and I hate every single second of it. I am sitting with you and feel the same way you feel everyday. I live everyday scared of everything big or little at this point. Most of my family left me even before the cancer diagnosis, so I don't have really much support from the word family. My kids are older but too young to grasp that their mother is dying slowly. Or fast, however you want to look at. I am scared and have no idea what is coming my way... other than progression. That is inevitable, that I know. Lita, I am with you when you hurt, I am with you when you're sitting alone. I am with you when you pet Sofia! I have the bone pain in my back that feels like chewing non stop. It's relentless and extremely painful, and it would drive any normal person extremely mad. It's actually like living hell. It breaks my heart to read that post Lita. But I'm with you and I understand, from the bottom of my heart and from every tear i shed isn't just for me it's for us all. Our MBC and BC family. I would say god bless you. But I've prayed so many times for everything and everyone and the pain and suffering still continues. So I am at a loss, we all are. This is just to much to bare sometimes. Sometimes even I feel like giving up, but then it hits me, that's not even an option either. So we go through this awful path that we were thrown into with out choice. We walk it, limp in some cases from day to day! Lita, I hope you know I feel what you're feeling, I understand the fight within not only your body, but your crystal clear mind, and beautiful soul. I would be hugging you and holding your hand if I was able. ~M~
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Micmel,
Thanks
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Lita~ hope you're doing better today. Just checking on you!! Hugs ~M~
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Cancer sucks! Olivia Newton-John just announced she is now stage four after being NED since 1992. What the hell! I wonder why I even try. It seems inevitable that cancer will win. It's just so disheartening to hear something like that. My heart breaks for her and her family.
I feel like I should just give up. The fear is with me constantly, I should just accept this is how I go out. I've been having pain in my abdomen and shortness of breath for a while now, my ultrasound is next week. I'm pretty sure what the outcome will be. I guess all I've done is bought myself some time. I realize how I sound but it is hard to be upbeat when cancer keeps punching you in the face.
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MeToo14
I am so sorry to read this. Don't give up please.
Vicky
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Meetoo~ I know it truly sucks badly. I hate it right along with you, its pretty damn horrible. But we have no choice but to soldier on together. Every freaking ache and pain I am sure that it's cancer. It just proves money and fame can't buy you everything either. I pray for her and her dear family. It's a hard road. But please don't ever give up you have people who love you,and these days we can actually live for years if it doesn't progress too fast. You would think that with ER positive cancer being the most common cancer that they would know more about how to eradicate it. It makes no sense but you are not alone at all. We are here. Gentle hug ~ M~
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I'm all for calling a spade a spade and I admit that when I heard that after being fine for 25 years that this filthy cancer can jump out of the woods and come back like that, yeah, it kicked the legs out from under me. It is hard to find hope or a positive lining in any of this. Plus I hate people telling me to be positive or look on the bright side. I want to poke those people in the eye.
But it was 25 years ago that she was treated. If she had chemo, it would have been first or second generation and we supposedly have better treatments now. If she can get 25 years with treatments that now would be consider antique, does that put us currently or recently treated in that much better place? I sure hope so. Heading into chemo, I'm banking on it.
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One of my RN infusion nurses is 25 years NED. She took the same meds I did. But at that time there were no AIs, just Tamox, so maybe.. It would help if we knew her bc profile. Many people call bc starting at DCIS while we here call that pre-cancer. I wish her well. She's such a nice and uplifting person who so many look up to. Just so sad.
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I too am sorry to hear of Olivia Newton John's progression.
Artista928, I respectfully disagree with your statement "Many people call bc starting at DCIS while we here call that pre-cancer ." I have seen this issue discussed in lots of different threads. DCIS is cancer because DC means Ductal CARCINOMA. Of course the IS part of the acronym means it is contained and hasn't spread (In Situ). I personally might call that pre-invasive but NOT pre-cancer because it definitely IS cancer.
Anyway, I'm not trying to be argumentative or critical; just wanted to say that there is some disagreement even among members at BCO as to the definition of DCIS.
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Wow! I think I have found part of my answer to a question I didn't know I had. Well, actually, I do question it on a daily basis. Am I normal??? Finding this room, and you ladies, makes me realize I am normal. My new "stupid" normal. A hormonal-less, 35 year old woman, married for 16 years (together 19), with 3 girls. Identical twins who are 15 on Thursday and an 8 year old. Forced menopause and puberty don't mix. My husband is a saint who I would like to throat punch on a daily basis. I was just telling my brother, who I work for and love, that I feel like a teenager again with my moods and brain function. He understands me and told me I should go to counseling. I should but I know I won't!
I'm not paying for that! My life has been hell since September 2013. I was 31.
Late August- Early September -
Awesome family vacation to Florida with my 2 brothers and our families. We stayed at the beach for a week then Disney for a week.
Early September-
My dad had a heart attack at Hollywood Studios and we left him and my mom in Orlando for what ended up being over a month due to needing open heart surgery.
Mid September-
On a Thursday, I feel a lump in my left armpit while shaving and get an appointment to see my GYN the next day. They rush me in for a mammogram and I had a biopsy the next Wednesday.
October 2014 -
DX with DCIS Stage 2B-3A . 13 nodes taken out. I can't remember how many were positive. ER PR + HER2-. I Got my port placed and started Chemo. 4 doses of Adriamycin and Cytoxan, every other week and 4 doses of Taxol. I finished on January 29, 2014.
February 21, 2014 -
I had a double mastectomy with tissue expanders. All cancer was GONE!
April 2014-
Started 21 doses of radiation.
September 2014 -
Total Hysterectomy. They took EVERYTHING. AM I still female? NO boobs NO internal vaginal parts?!
December 9, 2014 -
Healed from Radiation and had reconstruction surgery with gummy implants.
January 3, 2015 -
My incision on the radiation side opened up and the plastic surgeon was able to save my implant and major stitching was done. I held my arm in a sling for 4 months to have it heal from the inside and not pull.
April 2015 -
I started working for my brothers after being a stay-at-home mom for 13 years. My dad left my mom after 35 years of marriage for an older woman. He doesn't understand why we are upset and threatened us and we haven't seen him since Jan 2016. We were all very close. He changed after his heart attack and was jealous of the "attention" I was getting.
My older brother was coughing and I MADE him go to the walk-in for a chest xray. Turns out it flipped our world upside down again. He had a mole that was melanoma removed in 2009 and was told margins were clear live your life with no follow up. We now know that is bullshit!! His melanoma had spread from his brain to the heal of his foot. The mass in his left lung was as big as a man's fist.
January 2016
My brother and I were able to stay with my older brother (35) nonstop thanks to our families. He passed away in January 2016. Leaving us with his non-functioning alcoholic wife.Losing my brother to cancer has been, by far, the hardest thing I've ever been through. My aunt died at 36 from colon cancer, my brother at 35, and I am scared to death it'll be me soon.
Reading some of these posts was great! I feel angry and happy and sad and stupid all at the same time. I know I am unreasonable but I can't help it! I am upping my effexor to the max dose and hopefully that will help. I will be back to read more later. I must get back to work now before my bro comes in.
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my3riddle~you're not stupid and are allowed to feel whatever you need to feel. I want to bang my head against the wall daily. Knock myself cold. Then i do not have to feel. You're not alone. I fight for my family. Because I love them. I am sorry cancer has been such a part of your life. It blows the big one. I will add you to my very long list of prayers. By this time you would think I would have a red hot phone line directly To heaven, I have been praying so much. I will admit I chuckled at your throat punch comment. I feel like doing to that because of what stupid people allow to come out of their mouths. Do they have brains.? Even if I am sensitive, which I am. Give me a break. Or at least just don't say anything. It's hard to keep the flame alive going throughthis kind of disfiguring surgery and diagnosis. Not only physical but mentally. Who wants a one boobed, krusty the clown curly ass hair, road map for a chest and stomach. Oh and did I mention weight packing on and I don't even open my mouth to eat much?? Yeah baby! That's sexy. NOT!! I so much miss the old me. I was happy then. I am not happy now. I love my DH with all of my heart and he has been amazing. He never complains, he just tells me he loves me no matter what. I feel blessed and cursed all in one minute. Isn't that a mind fuc*? You're unfortunately correct when you say, it's going to be a long, exhausting battle everyday from now on....that's the hard part. It is truly suffering to feel as we are forced to feel. Not to mention that feeling of total despair leaving those you love possibly? Worlds blown up. And there is that shitty cancer, spreading its evil seeds. How I wish I could kick the living shi* out of it... for all of us. Prayers all around always. ~M~
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My3riddle...when should we file the papers to start your canonization for Sainthood? (BTW, we're ALL saints here at BC.org
)You've been thru SO MUCH in such a very short time!
I HATE effing cancer with every fiber of my being.....even MORE when it strikes YOUNGER women! My Heavens, we are just starting to LIVE our lives when we enter our 30s. We've figured out who we are, our place in the world, families are stabilizing, our career trajectories are taking off, we're putting money aside for cool vacations, and then BAMM!
It's NOT FAIR!
That being said, sorry to welcome you to "the Club no one wants to join."
We're here to support you and listen to your rants.
Hope to hear from you again soon.
Lita
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My dear, long suffering husband. I want to hit him on the head with a rock! God forgive me, that is an awful thing to say, but OH MY GOD I am so frustrated with him. So disappointed and so betrayed feeling.
Yes, he has come to every appointment, but not without a fight. He does not react well to change, in fact he will do anything in his power to make sure that his set routine is not impacted by ANYTHING outside his own realm of operation. Well I am sorry to say that me having cancer is about to have a MAJOR disrupting effect and he is acting like nothing has changed. I have asked, begged and pleaded for him to acknowledge this situation with a temporary change in his behaviour - not even forever, just for now - nope. The support I have asked for is not going to be delivered.
I truly think this is his way of dealing - to NOT deal. If he denies, denies, denies that I need something it is, in his mind, and effective way to deny that there is something wrong. If he refuses to change himself because I have cancer I will then not have cancer! Magic. Wait, no, not magic, damaging to relationships. I want to shake him and scream DUDE, WAKE UP! But he just goes about life as if nothing has changed. He drives me to doctors and sits in offices but aside from that, it's business as usual.
I think this cancer has changed me, scared me, rocked my false sense of security. Chemo, radiation and hormone destruction is also going to change me in profound and perhaps permanent ways. A scarred, off kilter boob is also there as a daily reminder. It is both numb and painful at the same time. I am being steamrolled under all this bullshit, all this mourning and terror and he is .... acting like it's just another day.
He has said that he isn't sure chemo and radiation and tamoxifen are worth it. Wait. What? Are you saying that the steps I take to save my life might not be worth it? And while I agree that there needs to be strong reasons to do these things, and I might say no to some of it, I wonder about his motives. You'd think he'd be begging me to take every option to stay alive, to prolong my life. I really don't know his motivation for saying that maybe chemo and radiation just "don't seem worth it." I have to think that the mess and illness and disruption these treatments might cause is something he doesn't want to deal with. Again, it's about HIS comfort with HIS routine and him trying to keep it from being messed up by me being a sicky.
I feel really kicked to the curb. In these last days before we know where this is going, I've asked him to be present with me. Instead he's asleep on the sofa with the remote in his hand. I love him. But I want to beat him with a rock.
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Runor~ you're not alone. My children are on that same road of denial. My daughter says to me last night at like 645. We need to spend more time together, ok goodnight. So I sat by myself for hours until bed. She could have stayed downstairs and watched something we both like. I am always alone, I am always waiting to go to bed honesty. That is the only place I can get away from the diagnosis, and this forced new life I've been living. I'm sorry you feel kicked to the curb. I just hate this disease,I have issues myself, because I feel like a failure, I was always the one constant reliable parent. I can't imagine why a god in heaven would put our families in such a hard way. It makes no sense at all. Hang in there together, because we have no choice. I believe he's just scared for you both ,and chemo is tough !! I'll be praying for you, that he wakes up . ~M~
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Oh rumor, I hear your pain. Mine finally started taking me to appointments but I might as well have had a rock with me. Did my research, read it over. Gave it to him thinking he would do the same. Asked a couple of times over the course of about six weeksif he had looked it over only to be told I was nagging him every couple of days. Four days before my appointment with my surgeon, I had to beg him to look it over so we could have a discussion. He finally did and said to me it's your choice. WTH! He has been no support since. Was actually told, "Get over it." six months after surgery when I reacted to a pain that ran across one of my scars. I feel like I live with a complete stranger now.
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Micmel:
I read a lot. Most of what I read goes in one ear and out the other. I have a bad memory. But I read somewhere, and it stuck with me like glue, that if you reach the age of 45 without someone very close and significant in your life dying, that you will spend the rest of your adulthood in a perpetual state of ignorance about reality. I thought that sentiment had real truth in it.
My dad died when I was 27. It affected me deeply. I was very close to my Grandmother and I was young when she passed. I have had many friends pass. I have seen death and been slapped in the face by the utter insanity of it and the horrifying permanence. I remember after my dad died, for a long time I'd catch a glimpse of someone who looked like him and I would have that momentary skipped heartbeat where I was overjoyed that he was here! Back! That this whole death thing was just a stupid, horrible joke. It took a long time to accept the finality and foreverness of him being gone.
My husband, at 55, still has both his parents. He was not at all fond of his grandparents. He has had only a few friends pass and not that close to them anyway. He is that person who hit 45 without the reality of life and death hitting him in the face. It has always been an arm's length event for him. He is making damn sure it remains that way now. The effect of which is to make me feel utterly shut out at a time I need to be reached for and held tight. Worse, he is failing to grasp this to maintain his own comfort. Which I think is criminal. Okay, screw this up for a day or two and them realize that Big Shit is happening and step the hell up to provide the support that I have asked for in plain English, the language of your birth! There is no misunderstanding what I want. There is just deciding that delivering it is too much discomfort so ..... no.
Kids. They don't get it either. Not many. Self centred. I feel for you, I truly do, and I know what you mean, as mine has her face glued permanently to her cell phone. So many things I want to hit with rocks today....
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Runor~ & Kathi~ I have no idea why we are in this shit soup, I can never once complain about my DH. He has been a saint since day one. Asking questions to my onc, always taking care of me, holding me when I lose my mind and cry, because I just don't understand. It is everyone else that I would like to borrow your rock for. I went into the bank the other day and the teller who I know, knows that I have cancer asks me why I went and cut my hair. !? Excuse me what? I didn't cut my hair. I lost my hair because of chemotheraphy, say it Keemotherapie, I didn't want to lose my middle of my back beautiful mane that I have been growing for years. I didn't want to lose my hair and have everyone stare at me when I even ride in the damn car. No I didn't. Thank you very much. I had no effin choice. And I effin hate mostly every minute of everyday now. The ONLY reason I hang on is because of my DH and the amazing love I have with him,and for him. I don't know how he is able to be so strong and so kind and loving at the same time. I cant be as physically active in the bedroom, and that bothers me. But he is so sweet and just waits without complaint, which makes me not want to take him for granted, so I take care of him because I love him, and none of this is his fault either. But he has lost both parents and grand parents. I am his life as he is mine. We have three kids. Ages 21,20&16 and they are still growing up. But they just don't understand what picking up slack is. Shit , they don't even clean up after themselves very well. Annoys me to no end. Still sleeping machines, I have to bribe someone to run to the store. Most times I just drag myself out and take care of it because I don't feel like worrying about it , if I do it, it is just one less thing I don't have to ask for. I have never hated something as much as I do cancer. And I don't think I ever will. I look in the mirror and I hate what I see. My hair was straight, now it's horribly curly, I had the color I wanted. Well we all know it doesn't grow back that way, I am happy I have hair don't get me wrong. I have that inner voice telling me not to get too used to having it again , because at some point they are going to tell me i have to have that shitty chemo again. I am not going there again. My body can't take it. In my opinion it's just like whack a mole. At least my last scan was stable. I don't have to see him(oncagain for three months. And as long as I remain stable. I won't need another scan for a while. Right now. That's all I have. Hugs for you all. Nothing about this is easy NOTHING!!! ~M~
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Runor, I don't know what to say. It sucks. But if DH won't give you the support, you may have to let some stuff go or find the support elsewhere. I was always pretty fastidious about my house being clean and organized, but my DH and DD hardly do a thing and frankly couldnt care less.
So the house looks like hell now...except for my bedroom...I do keep that up. Kitchen floor hasn't been scrubbed in weeks. When their bare feet start sticking to it maybe they'll mop it. When we run out of milk, I tell them to go and buy some. I get my calcium from other sources.
I tell them, "Get used to it. Pretty soon I literally won't be here and then you'll have to do EVERYTHING for yourselves or hire a housekeeper."
Sadly I don't think your DH will ever get it. I lost my mom when I was 17. Three of my grandparents were already dead b4 I was born, and I lost my maternal grandmother when I was 23. I get it. You may have to think about living a separate life...yes, your DH seems to have already written you off, saying chemo and rads may not be worth it. Does he expect you to just give up and die? What a son of a you know what!
It's time to live YOUR LIFE. Find help and support elsewhere. To heck with him. You're beating your head against a brick wall. I'm sorry to say that this happens to a lot of women. My love and prayers are with you.
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Micmel. Your post. Powerful. I stand in respect and solidarity with everything you said. It takes my breath away.
Lita57, my friends and I, when we complain about our partners, break their stupidity down into two categories. Stupid on purpose or stupid by accident. Stupid by accident is given more leniency than stupid on purpose. I think is this case with my Hub, he is terrified into being paralyzed. But there is also that extreme self involvement that has been his life pattern. Frankly I'd bet everything I own on him being somewhat autistic, definitely on the spectrum. If he was a kid in school now he'd be tagged and special steps would be taken to help him cope with life. But back in the day, poor kid from a poor family in a small, rural school...he fell through the cracks and life has been harder for him in many ways than most of us. But the reality of this is that the concept of OTHERS is one he refuses and blocks out and pushes away in the extreme. He is open to having people in his life as long as their lives do not clash with his needs, wants and chosen goals. We have a great relationship until I need something and then holy shit, everything goes to hell in a hand basket! I cannot mess up his trajectory with my existence.
When I first was diagnosed my instant thought was that I am not ready to leave my husband. Boom! That washed over me like a tidal wave. I love him. I want him. But that does not change the fact that he fails to show up in a solid way. He does show up body wise, if I make him, remind him and threaten him. But aside from that, his life is the way it is and that's the way he needs it and any change to that will be met with hostility. He is not an asshole either on purpose or by accident, but almost by a fluke of birth. I think.
So it is possible to love someone to pieces and still feel utterly alone. Which is sort of how I feel. I am very needy right now. Needy is not my role. Doer, giver, take the back seat, go without, make the sacrifice, that is my role THE ROLE OF MOST WOMEN WITH FAMILIES! And when we change the status quo, we get pushback. I get angry when I read about adult aged kids not helping - but my own is no different!!! The only difference is when I ask for something and she grumbles about it I tell her to pack and move out and live where life is better than it is here. Because here she has obligations and the one true way to duck out is to pay rent and utilities elsewhere. Buh bye.
Reading over this I realize I sound like a psycho bitch, claiming to love her husband and wanting to hit him with a rock at the same time. But that is my truth. Not sure what to say about that.
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I hope I didn't sound too callous, Runor, but I've just seen this too many times in my LIVE support groups. I'm certainly not saying END the r'ship, but you're going to have to put yourself first and find ways to do it.
You are FIGHTING for your life, and if he doesn't want to fight with you, you will have to find support among your friends. Can someone else go to dr appts with you? Can someone bring you a meal now and then or just come over and sit with you and help you fold laundry?
I hope you can find someone to help in areas where your DH won't. We have all had friends and family members abandon us since dx. They just don't want to hear it...it makes them more cognizant of their own vulnerability and mortality.
Are there any LIVE support groups in your area either thru your hospital or local cancer support/education center? I know it's tough...there is one MBC group that's 45 mins away and another about an hour & 15 mins away from me if there's no traffic. I also have a small group at my local church, but it's for ALL types of cancer (men & women), and it only meets a couple times a month. But at least I can commiserate there and get some insight and support from them. We share and help each other.
Social workers can be helpful too. They can provide helpful resources. Other savvy women will provide insights, too. It wouldn't hurt to get some counselling during this.
We cannot change others; we can only change how we choose to view the situation, how we react to it and how to manage it.
Hope this is a little more optimistic 😁.
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