STEAM ROOM FOR ANGER
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Just a few things people have said to me lately:
"Now how long have you been cancer-free?" My dental hygienist said that. I am stage IV. She knows that.
"Why can't you just be cured like Jimmy Carter?" DH
"Don't you just want to do chemo and get rid of it?" Radiation oncology nurse who escorted me to my Pet scan yesterday. I guess that's why she is on escort duty.
"So you'll be taking medicine forever?" Sister-in-law. Also knows I have stage IV.
I'm also getting pretty upset by how ignored and misunderstood people with stage III are. The forgotten group. But if people can say the above things, maybe we are all forgotten, ignored and misunderstood. It just takes too much effort to explain and understand.
Versenio commercial on RIGHT NOW. I guess I am not RELENTLESS enough because I take a week off Ibrance every month.
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SuefromSydney I bet you are right--often people either over-react to your cancer or ignore it and you because they have no idea how to say anything at all. They do not understand that you are a person and not just "cancer" and might like a nice distraction from time to time.
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SuefromSydney, I also am disturbed by how uncaring most relatives and friends have been. The only two friends who reached out are both women with cancer, so they know - and I've been sure to stay in contact with them to check on how they're doing now. My sister would occasionally ask via text, but then change the subject before I could respond. Most of hubby's brothers and spouses acted like they knew nothing about it when we saw them last month, except for one who said I was "all over Facebook with it." Sheesh, all I did was mention when I was having surgery, and a small yippee when I finished radiation. Can't please anyone. I got one flower arrangement from Hubby's place of work, and a couple odd (but I guess well-meaning) cards from my sister. Oh, and an offer from a new niece-in-law to do anything I needed. No offers from anyone to go for lunch, or take a walk together. Poo. I feel like most of my relationships are much more superficial than I had thought.
Let's have cyber-drinks together! Everyone is welcome. 🍷🍹🍸
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Alice, I am bringing Gin for a Gin Martini🍸👍
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espresso martinis are a good melding of coffee and drinks, and probably still taste good with chemo taste buds;-)
Thanks for the encouragement guys! I don’t think people are uncaring, just busy. And we sometimes are too, with appointments, work and family. I’m sure I wouldn’t have done any better, but I’ve certainly learned a lot about what not to say. “Let me know if you need anything “ would be top of that list.
A book I’ve been reading (can’t remember which one, of course) talks about people who are suffering needing to feel accompanied. I think that really nails it.
Love yez all
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A second person with you to be your brain is definitely helpful when yours is mush.
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Watching my favorite medical escape Grey's Anatomy and loved a line about "yes I'm playing the cancer card because I"M THE ONE WITH THE CANCER!!!" Want to scream that sometimes at people who look like I lost my mind.
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Hey mistyeyes - I'm in The Villages. Do you ever come over this way?
Snickersmom/Ann
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I hate....
How I feel right now, in this moment. In this long, dreary, STUPID winter. In the lack of sun. I hate that I don't have any close friends to go have coffee with and that even if I did, I have lost the will to brush my teeth or put on pants. I hate that I have begun to feel inept, wrong, awkward, stupid, pathetic and pointless around people. I hate that people ask me how I am and I answer honestly, to some of them. When I am honest I say, I am fine except for the mess between my ears that haunts me day and night with such obliterating sorrow that I can't put my pants on anymore! And for my honesty they ask me less often so I hate that my truth is an ugly story no one wants to hear and most of the time I am sick of the sound of my own voice.
I hate the debate in my head that rages and I never feel better for having it. One voice says, wow, did you ever fall apart at the reminder that you are going to die, you do know that you were always going to die, right? Maybe I did know it, on some level. On some level that I was perfectly good at ignoring, thank you very much. And now, it's all I see, like a pair of sticky cancer contact lenses, EVERYTHING is filtered through this shit that I can't UNknow. Oh yes, life goes on and I got on and that is what people want to hear and I put on a good show. Pipp pipp old girl, tally ho, carry on, stiff upper lift, onward and upward. Oh my god. I want to bend over at the waist and heave and heave and heave until I vomit out that bitter, ugly wad of misery that rammed its way into the center of my being when the doctor said, it's cancer.
I hate how this diagnosis made ABSOLUTELY NOTHING clear. Okay, we have to live each day. Doing the dishes? Cooking meals? Vacuuming the floor, scrubbing the toilet, washing the windows, opening the mail. mopping, washing, folding........ I know I am lucky to be here to do these things, KNOWING it is not FEELING it. I feel doomed. Like a big clock is ticking (because let's face it, it is!) and this movie life of sudden clarity, vision and completion of Really Important Life Goals isn't happening! I am not a movie star and if this is a script, it's a shitty one.
(letting out big sigh) If some genni popped out of a bottle now and granted me 3 wishes, what would they be? Hmmm.... based only on my feelings at this moment they would be
1) to have my daughter back for a day as a chubby, curly haired, velvet skinned toddler so I could scoop her into my arms and bury my face in her neck and breathe her in and hold her in my arms until she falls asleep.
2) to have my husband look at me like I was desireable, as if I was beautiful, as if I was not old and sagging and fat.
3) to live as if I was going to live forever then to drop dead suddenly without ever seeing it coming, to die dancing like a fool wearing bizarre clothing and huge jewelry.
This cloud will lift. I have to believe that. But I hate it. I hate that this cloud lifts but never leaves my horizon anymore. I live in a very small weather pattern these days. Clear days and violent storms. I am thankful for my life and hate that this is my life. I hate that I am, apparently, bat shit crazy.
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I guess one advantage of this not being my first cancer rodeo is that the actual cancers haven't freaked me out. I do worry about running out of body parts, though! I hate this gloomy winter weather because I can't get out and do the walking in parks I started doing last year. After every doctor visit or procedure, hubby would take me to a park so I'd have some mental balance and not be stuck in cancer mode. Well, I had to wait a few days after the lumpectomy and re-excision, and about a week after the nephrectomy - I had a few days after that one where I wondered if I'd ever feel human again. But I gradually did, and although I've gained some twinges, I've lost others. I hope I don't crack while waiting for better weather, because sometimes I think those outings were the ONLY things keeping me sane. I'm worried that I'll get Tamoxifen crazy with no outlet, but so far, I haven't snapped. Yet.
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Runor - if you are bat shit crazy, I am too. And I think we have a lot of company. Sometimes I just want to pound whatever is within reach and scream as loud as I can. But no, can't do that. Have to act like yup, the cancer is "gone" and so I need to get over it and go back to where I was. What?? that can never happen. can't go back because I don't have breasts anymore. Just scars. And they are my constant reminders. There's just no way to pretend nothing has changed. I still am waiting to wake up from this horrible nightmare. But I can't. So I have to do the best I can. Bat shit crazy? Yup.
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not trying to be disrespectful to those having a hard time. Feel bad for you all. But life has to go on. Living in mental misery is not living. Change what you can and work on adapting whether through support groups or working on your mind to see what you do have.
I used to be one in constant despair. I'm on meds and that helps. Looking at what you have vs what you don't anymore helped me. I'm sure some get angry at my posts, that I don't get it. But I do get it. I let my mind go down dark roads that made me suicidal twice and locked up. I was the but you don't understand even with counselors who went down my path. What did that get me. On top of that I had a fam that thought think positive was the cure. Nope. But meds and serious long term counseling and professional help and a lot of hard painful work by me has made my life better. Reading this thinking you don't get it, good for you but that's not me....was me. As hard as it sounds, we have a choice in how we interpret our situations. Some things can't change, but some things we have spinning in our minds making us nuts can by working hard on it and being grateful that it's not worse. All we really have is today, everyone sick or not. I know this is a sound off place and I hope you all are venting but are doing better irl. We all have our days. Mine is to do with my beloved dad. But have to go on.
With much ❤ to you all.
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Rosabella, I agree with you about not living in constant despair BUT the whole point of this is to allow us to vent here so we dont create stress at home. The people here can understand us. We support each other. As it says above, rant away.
My own stress has been tested with the recent death of my mother, family issues and getting ready to sell my home. It can take a long time to get distance from the sadness. I do find listening to hypnosis overnight helpful. It centres my mind. I also value this space where people dont need to tell me to get over it. If I've posted, that had been part of moving beyond a hurt.
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I realize that and I hope it's just venting but in case it's more serious than letting steam off is what I'm saying. I know I wasn't the only one consumed in despair 24/7 and I hope to help anyone who may be is all.
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I hear you Rosabella.
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Yeah, I just come here for an occasional vent because I've actually stayed pretty positive in real life. It's a way to keep that life as normal as possible without getting whiny at my family.
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runor, I can empathize. I do have some good news though. It has gotten better for me. I'm a little ahead of you, so maybe the clouds will recede further in time. They aren't gone. I am a realist. Despite that it has gotten somewhat easier to find joy. The month off tamoxifen last February seemed to kick off the improvement. (The month off itself was fabulous!) Not offering medical advice, just my experience.
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Well said alice and boobs - there is a place for putting problems and grievances on the table. Then they can be examined and put aside while we get on with the gift of life. Rosabella, I'm sorry you've been through a dark place - I hope you are healing now.
runor, I am so in awe of your beautiful writing. You're a true word smith, and I'm glad you can use your gift of skilfully crafted words to serve you well in expressing the hard things you are living with now. Thanks for sharing your feelings in this way. We love you as you are, and clearly your husband and family do. I hope the expressing in words-on-paper helps to give you energy to see yourself with acceptance. Believe me, I know how it feels to feel old and ugly!
Signed, the fat old bald woman of Oyster Bay ;-) (also tired, cranky and overwhelmed)
PS And may I share the mantra I share with my sister, which has now been taken up by the next generation of women: This too shall pass. Actually, maybe Ecclesiastes isn't always the most cheering reading! But it does come back to what has true value. You clearly understand that, even though you're grieving for what a=was and might have been. And now I'll stop rambling...
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Thank you SuefromSyd, I don't ALWAYS feel that way. I am sure I have posted in other places that as time has gone by I am doing much better. It is my hope that the clouds lift for everyone else too. But that said, I have learned there are bears in the woods and yes, one must live in spite of it and maybe living well is the best revenge! But at this particular moment, the dreary unrelenting gray of our sunless winter is really getting to me. I've been having a tough time. I know that when the weather improves and I can get outside and light stuff on fire ... my inner pyromaniac will outshine the darkness. Give me a little can of diesel fuel and a match and watch me go. It's just that everything is under snow right now......
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Life just stinks for all of us once cancer enter our lives from time to time. From insensitive doctors or staff who does not know what they are doing to insurance companies that do not want to pay claims. Dealt with all of them this week.
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Now I have to go to an edema massage therapist for the swelling in my feet, ankles, calves, and thighs, which look like tree stumps...another lovely side effect from Gemcitabine (Gemzar). I have purpura (red/purple spots) on my arms, chest, shoulders, and back. I can barely walk and have to use a back brace and a cane at all times because of the pain, dizziness and balance issues. My blurry, dry, itchy eyes are the worst they've ever been, despite trying to rest them and all the dry eye drops and products I use. Gastrointestinal problems continue to plague me, and I have to wear Depends or a thick incontinence pad at all times because of my loss of bowel and bladder control.
But I haven't lost my joy...at least not yet.
It could always be worse, and I already know it WILL get worse, but I'm trying to stay in the present.
My faith sustains me, and I know I will be going home soon. I will see my parents again, and meet my nieces and nephews, countless cousins, and my beloved first English Bulldog will be on the bridge, waiting for me.
And I will gaze into the face of my beloved Savior as He embraces me with His strong, comforting arms.
L
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Lita your heart and courage overwhelm me in a positive way. I hope to face whatever comes in my future with as much grace, faith and positivity.
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I am in awe of how you cope Lita. There are non stage 4 people who are reacting like they are stage 4 and here you are showing people that no matter what, things could be worse and to live in the present. You are truly a role model. ❤
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Lita, and Parry and all you ladies suffering the worst side effects, I feel very sad to hear your stories, but so encouraged, at the same time by the way you keep moving forward.
I told a friend, that I don't want all beloved stuff on some ( hopefully far in the future) headstone, unless front and center it says "She persevered".
Runor, you totally rock that dark space you are inhabiting now, as long as have too. I hope you do have moments of grace and humor, the way I do. And that at some point the good outweighs the bad.
I do well until some bad bc industry related issue arises, then BAM, back in the dumps, so I really understand. It is like walking across scree, or trying to climb out of a collapsing pit. A balancing act, ...can you climb out quickly enough before being buried? Other people have no idea how much I knock on wood, how much I live in some degree of daily fear. It's kind of exhausting, day in, day out, to have that fear. Sometimes it's a tiny kernel of fear, sometimes it's a great stinking hole full of despair and simmering rage. I am like Marley's ghost, carrying chains fashioned by the bc industry, and my mother's endless cigarettes as well I am sure.
Like, I don't go back to anything to do with the bc industry. No mammos, no onco docs, none of that. I felt such relief when I decided no more. So I occasionally still get trapped in c related stuff. My dentist feels she has to palate my neck for lumps. I have told her, and told her I don't want her to do that, to just take care of my teeth and my poor chemo exacerbated receding gums. She just feels compelled or something to do it. Now I go to see her with a scarf heavily wrapped around my neck. I otherwise like her, because she is very gentle, and I have terrible PTSD about needles since the bc industry ruined my health, mental and physical. I now cry at the dentist, and have to have gas, or I cannot stand it. I have another visit coming up and I am dreading it.
I have a trip to Cabo planned the 18th of February, just because I too am oppressed by Winter Doldrums. I planned to go somewhere a couple of months ago, and only finalized my plans a couple of weeks ago. It will just be me and my daughters, because my dh never wants to go anywhere except Dublin, to stay at his Mom's house. It will be much more fun without him. Some sort of Mathematical formula of inverse distance from unpleasant/ thoughtless husband equals Expanding Degrees of FUN!..
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Lita, and Parry and all you ladies suffering the worst side effects, I feel very sad to hear your stories, but so encouraged, at the same time by the way you keep moving forward.
I told a friend, that I don't want all beloved stuff on some ( hopefully far in the future) headstone, unless front and center it says "She persevered".
Runor, you totally rock that dark space you are inhabiting now, as long as have too. I hope you do have moments of grace and humor, the way I do. And that at some point the good outweighs the bad.
I do well until some bad bc industry related issue arises, then BAM, back in the dumps, so I really understand. It is like walking across scree, or trying to climb out of a collapsing pit. A balancing act, ...can you climb out quickly enough before being buried? Other people have no idea how much I knock on wood, how much I live in some degree of daily fear. It's kind of exhausting, day in, day out, to have that fear. Sometimes it's a tiny kernel of fear, sometimes it's a great stinking hole full of despair and simmering rage. I am like Marley's ghost, carrying chains fashioned by the bc industry, and my mother's endless cigarettes as well I am sure.
Like, I don't go back to anything to do with the bc industry. No mammos, no onco docs, none of that. I felt such relief when I decided no more. So I occasionally still get trapped in c related stuff. My dentist feels she has to palate my neck for lumps. I have told her, and told her I don't want her to do that, to just take care of my teeth and my poor chemo exacerbated receding gums. She just feels compelled or something to do it. Now I go to see her with a scarf heavily wrapped around my neck. I otherwise like her, because she is very gentle, and I have terrible PTSD about needles since the bc industry ruined my health, mental and physical. I now cry at the dentist, and have to have gas, or I cannot stand it. I have another visit coming up and I am dreading it.
I have a trip to Cabo planned the 18th of February, just because I too am oppressed by Winter Doldrums. I planned to go somewhere a couple of months ago, and only finalized my plans a couple of weeks ago. It will just be me and my daughters, because my dh never wants to go anywhere except Dublin, to stay at his Mom's house. It will be much more fun without him. Some sort of Mathematical formula of inverse distance from unpleasant/ thoughtless husband equals Expanding Degrees of FUN!..
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Rosabella,
There's a difference between "not going on the path of despair" and not allowing others to treat you like you have no feelings, or not allow you to complain about anything, or step all over you with disregard to your opinions, or treat you like a number when you go see a doctors, etc.
Also, as the ones above said, this is the thread of venting. About anything and anyone who cheezes us off.
Maybe if you read the OP you get it.
There are other threads that deal with emotional issues. This is not the one.
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Lita blessed sister you don’t know me but I’m holding you before our good God. Your joy is a gift from him, a solid fact not a feeling. I pray comfort and peace for you
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Lita as always well said. I feel the same say about seeing my loved ones again, especially my mother who I lost recently.
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Jeez Seachain. Don't have to be rude. If you read my last post you'll see what I meant. I know the differences. I also know not everyone in crisis posts in those other threads.. that's how most suicidals work.
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Rosabella,please, don't also confuse stating facts with being rude.
It's all in the eye of the beholder. For me, for example, to come on a thread created for our sisters to be able to come and freely vent on issues that they can't vent freely anywhere else, and tell these ladies they shouldn't vent because "dark paths" and "suicide" and all kinds of other negative things , making them feel they can't even do that here, is EXTREMELY rude.
This is supposed to be our safe place to vent, and that is what sas-schatzi created it for. Please feel free to start your own thread on the subjects you're trying to raise, and respect the people who found a safe haven here - otherwise there wouldn't be THOUSANDS of post on this thread.
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