Im bitchy, I moan, I groan.....anyway.
Comments
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Shirley- You made me cry! I feel for you sometimes it feels we could move boulders for our children and they can not pick a sock up they left on the floor. One lady told me I should consider it great that my kids have adjusted and are not really depressed with all the family has gone through these last few years! In a way she is right, but damn it sometimes it would be nice for them to seem like they care and ask what they can do for me!
The talk with your granddaughter is so heartwarming, those are the real tough times in life and it sounds like you handled it wonderfully!
You are always here posting for all of us, let us all give you a big super hug, and you are entitled to have a morbid sad day! But remember we all die it is just how we get there! So let it go when you feel to sad and remember we all do have "those days", and plan on dying with a party dress on dancing and in your 90's!!!!
ANNNYC- PS acting like 5 teenagers... you are too funny!
Christine- I feel for you having the Young ones out of school while you are going through this crap. Summer is always hard when we are healthy you want the relaxation of summer and the good times with the kids but then....they are ALWAYS around!!! Yikes!!! I move from one room to the next and cannot escape them!!!
Deb- I would like to throw all my kids crap they have left all over the house in that bonfire!!!!
Badboob67- I can relate to the no AC sucks! they finally fixed my house AC last night! What a difference that makes in our moods!!! We, all 7 of us, were ready to tear each other's heads off!!! Over 100 degrees outside and much hotter inside!!!
I am having a better not too sucky day! My intestine drain tube had blood draining into it last night after I flushed it! Freaked me out called the radio dr and she said it was probably a good sign that the infection has completely drained and she pushed my ct to thursday from monday 16, and if all goes well i could have this drain out tomorrow!!!! YEAH!!!! Would be nice if they warned a person that this could happen!! Blood coming out the drain was not what I had expected!
I can not even comment on the mets that our fellow sisters are going through having watched my bf die at 44 leaving her husband and two children. It is too sad for words!! She died of colon cancer! Man this cancer crap is the worst! Miracle cure, not possible but wouldn't it be nice, everyone would just live their lives with normal problems and fun times and this shit would never interfere!!!
Wishful thinking but from the bottom of my heart I wish for it for all cancer patients and their families!
Bye girls,
Dani
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Shirley- You made me cry! I feel for you sometimes it feels we could move boulders for our children and they can not pick a sock up they left on the floor. One lady told me I should consider it great that my kids have adjusted and are not really depressed with all the family has gone through these last few years! In a way she is right, but damn it sometimes it would be nice for them to seem like they care and ask what they can do for me!
The talk with your granddaughter is so heartwarming, those are the real tough times in life and it sounds like you handled it wonderfully!
You are always here posting for all of us, let us all give you a big super hug, and you are entitled to have a morbid sad day! But remember we all die it is just how we get there! So let it go when you feel to sad and remember we all do have "those days", and plan on dying with a party dress on dancing and in your 90's!!!!
ANNNYC- PS acting like 5 teenagers... you are too funny!
Christine- I feel for you having the Young ones out of school while you are going through this crap. Summer is always hard when we are healthy you want the relaxation of summer and the good times with the kids but then....they are ALWAYS around!!! Yikes!!! I move from one room to the next and cannot escape them!!!
Deb- I would like to throw all my kids crap they have left all over the house in that bonfire!!!!
Badboob67- I can relate to the no AC sucks! they finally fixed my house AC last night! What a difference that makes in our moods!!! We, all 7 of us, were ready to tear each other's heads off!!! Over 100 degrees outside and much hotter inside!!!
I am having a better not too sucky day! My intestine drain tube had blood draining into it last night after I flushed it! Freaked me out called the radio dr and she said it was probably a good sign that the infection has completely drained and she pushed my ct to thursday from monday 16, and if all goes well i could have this drain out tomorrow!!!! YEAH!!!! Would be nice if they warned a person that this could happen!! Blood coming out the drain was not what I had expected!
I can not even comment on the mets that our fellow sisters are going through having watched my bf die at 44 leaving her husband and two children. It is too sad for words!! She died of colon cancer! Man this cancer crap is the worst! Miracle cure, not possible but wouldn't it be nice, everyone would just live their lives with normal problems and fun times and this shit would never interfere!!!
Wishful thinking but from the bottom of my heart I wish for it for all cancer patients and their families!
Bye girls,
Dani
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Dani - what a concept! Normal lives, normal problems and fun times. No cancer tragedies. Wow. My wish, too.
Lisa
ps - glad the drain's comin' out!
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I have not been here in awhile--not because there's nothing sucky going on, but because nothing I have quite qualifies as sucky enough. Too much good news, I guess, mostly 'cause of finally receiving my last dose of chemo and struggling through these next 2-3 wks of SE's.
So.... wow. Everybody's stuff SUCKS. I don't know where to begin. I do go over and read the mets boards sometimes, but it just makes me so sad. And, I have no idea how I would handle it if someday my Stage I BC suddenly reappeared as bone mets. No idea.
My main reason for posting today is to endorse Deb C's idea of a bonfire. It will need to be a big one, though.
Deb, I have some things I want to burn. Bras, mostly. No, that's it for now--just bras. I am SO PISSED OFF. Before BC, I had 3 or 4 bras that I really liked and were really comfortable. Two were "official" ones, and two were "leisure-style" (i.e., no visible means of support).
After my mast/SNB (no recon), my old bras no longer fit, mostly because of some residual post-op swelling under my left arm where I think my surgeon left a bit too much "fluffy" tissue above the incision. It poofs out. No big deal, but a normal bra just won't work there anymore. Temporary problem, will resolve within a few wks, right?
So I went bra-shopping for some "temporary" (pre-prosthesis) bras in a size or two larger than usual, that I could wear with a fiber-filled "puffy". (I'm a 34A or 36A, so that's not difficult to pull off.) I found some, and bought them. Then I realized they didn't work either--they left band-marks over my ribs on the mast/SNB side after 4 or 5 hours of wear. So I went bra-shopping again, and found some more. Bought those, too. Guess what? They leave band marks, too. I can't tell when trying them on--only after I've worn them half a day.
I went for a "trial" prosthesis-fitting about 8 wks after my surgery, but that was a bust. (ha ha) They didn't have a form that worked at all--they were too big, too heavy, etc. Need to go back to do that seriously one day, but only after the swelling is gone. I'm now 4 months post-surgery. Nothing has changed.
In the meantime, I found out I would need chemo. Funny thing I've discovered about Taxotere (of my Taxotere/Cytoxan regimen)--it causes fluid retention and swelling. Makes my mast incision slightly puffy by the end of the day, and I get some swelling on my left chest wall and over my left shoulder blade, too. Hmmmm.... My onco wasn't concerned, because it's transient--it comes and goes within half a day or during the night, depending on what I'm doing.
So I go bra-shopping again, and find some more. This time, I shell out $45 for a Vicky's Secret IPEX bra, which fits great until the Taxotere kicks in...then it leaves a band mark. Found some cheaper sports-bras at WalMart, with wide bands. They work OK for about 4 hours but then ... same problem.
All right. I just went in and counted, and I have bought ELEVEN bras since my mast/SNB, and none of them fits right. Every single one of them leaves a band mark on the mast/SNB side after I wear it for a few hours, no matter how loose it is initially. I am using a "comfy"/"puffy" fiber-filled prosthesis on that side, and it's not leaving pressure marks at all. This is just a bra thing.
Of course, I'm worried I might be developing chest/truncal LE, but it's hard to tell, with the acute effects of the Taxotere messing things up. I am hoping that once the Taxotere is gone and that swelling has disappeared, I will finally know whether I need to go back for another LE consult. (My first one was 6 wks post-surgery and there were no problems at all.)
So, about all those new bras. I want to burn 'em. ALL OF THEM. (I am old enough to remember those films from the '60's.) Damn things. This would be so much easier if I didn't have a right boob remaining.
T shirts rule.
otter
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Dear Otter,
I feel your bra pain. I have some I want to burn too. Gave away my Ipex bras to my sister-in-law this week. Still have the Walmart sports ones. I still wear power suits, when I am working, and here is what I have started doing: I now wear a camisole that fits me quite closely. I pin the puffy in there, on a level with my remaining boob, with four small safety pins on the inside. It works really well and is not at all uncomfortable. So I no longer bra shop--I camisole shop. I'll put the rest of my bras on the bonfire. (One of the things I hated about the puffy in a bra pocket was that the foam one rode higher than my natural one, and this solves the problem). Has anyone tried the puffy loofah sponge thingy in the mast pocket of a bathing suit? I have one now, and haven't swum yet. I guess I could get in the shower in it and see what happens......
I saw an LE therapist this morning and am now wearing a sleeve, for a week, to resolve what he says is a very mild case. I didn't know about the Taxotere, and he didn't ask me what drugs I was getting. Interesting and I will ask the next time I see him. I mostly wanted the sleeve for air travel and housework because I am clumsy and need it to protect my skin. Got some exercises to do as well, and I think I can manage this. But if it wasn't for you, otter, I wouldn't know the swelling could be Taxotere. You are so smart and because of your background you know HOW to look for info--thank you so much!!!!
Hope everyone has a not sucky day. At all.
Love,
Sue
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Add me to the ranks of the unhappily braless. I haven't found one yet where the band doesn't painfully dig in under my recon side after a few hours (including special Amoena post-mast bras). That's all.
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Dani, I didn't mean to make you cry. {{{Sorry.}}} You've been through more crap than anyone should have to take! It's gotta get better. And, no AC. Now, that really sucks! Anyone who has to fight this heat without AC...that SUCKS!
You certainly will be happy to get that drain out. I remember getting my two out...I felt free! Hated those darn things.
Yes, Dani, normal problems..my friend ask me today what I really wanted. I couldn't think of anything major in the way of material things. I said, just to be normal is what I want. She has severe RA, thus wishing for the same thing...never to be again.
My kids really are great. Just like everyone's kids here. Mine just happened to be GROWN. When I found out that I had bc two of my dds flew in or drove in to meet us at Duke. One being my gypsy daughter. One couldn't because she was very pregnant, had a two year old, and had to save her time for her short term disability after baby was born. I wasn't even there for his birth. Didn't see him until he was about 6 weeks old. But they were here for me. Went to the onc several times. Was there for my mast. My gypsy dd stayed with me after my mast. They came home with us...cooked food and froze it. I know I'm loved. They don't have to prove it.
I'm with the rest of you about throwing the bras AND prosthesis into Deb's bon fire. Under my arm where I had my mast it feels very uncomfortable, not to mention my chest (can't even say boob anymore..it's gone!). That darned bra gets so uncomfortable. Good thing I don't work because when I'm home I don't wear it...well, as long as no one is here. I'm quite lopsided.
I need to give myself LE massageS. I've been bad and neglecting that side of my body.I need to go back to all the posts and get caught up AGAIN. But first I need to "do" my hair (major chore)..going to primary doc tomorrow for 6 month check up. Geez, I NEVER thought I'd be seeing an onc every 6 months too.
See ya'll later.
Shirley
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Shirley,
I have to go to my ps office tomorrow, for another coat of pigment on that nipple/aureola ... it is really getting on my nerves! I'm thinking I should have just left well enough alone, and skipped the reconstruction. It is taking entirely too long, and I am fed up with it!Good luck with your dr. appt. tomorrow... and you look GREAT...really you do!!
Harley
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harley i probably have told you i went thru the same thing
right after i was done with everything! i went to see the pyschiatrist at memorial sloan kettering where i was treated and she told me it is SOOO NORMAL to feel that way when everything is done - many people experience those feelings at that time
it does get better slowly the cloud lifts and then you find a new nor
mal
i had the neck ache and jaw pain recently - went thru bone scan, mri's of the cervical and brain - all normal jaw still hurts but its not cancer - its hard not to worry about pains after bc- SO ALL PAIN DOES SUCK ! makes us nervous and worried
i am on the train and a young girl was standing and fainted just now! that SUCKS she is feeling better scary
well hugs to everyone
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harley i probably have told you i went thru the same thing
right after i was done with everything! i went to see the pyschiatrist at memorial sloan kettering where i was treated and she told me it is SOOO NORMAL to feel that way when everything is done - many people experience those feelings at that time
it does get better slowly the cloud lifts and then you find a new nor
mal
i had the neck ache and jaw pain recently - went thru bone scan, mri's of the cervical and brain - all normal jaw still hurts but its not cancer - its hard not to worry about pains after bc- SO ALL PAIN DOES SUCK ! makes us nervous and worried
i am on the train and a young girl was standing and fainted just now! that SUCKS she is feeling better scary
well hugs to everyone
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harley i probably have told you i went thru the same thing
right after i was done with everything! i went to see the pyschiatrist at memorial sloan kettering where i was treated and she told me it is SOOO NORMAL to feel that way when everything is done - many people experience those feelings at that time
it does get better slowly the cloud lifts and then you find a new nor
mal
i had the neck ache and jaw pain recently - went thru bone scan, mri's of the cervical and brain - all normal jaw still hurts but its not cancer - its hard not to worry about pains after bc- SO ALL PAIN DOES SUCK ! makes us nervous and worried
i am on the train and a young girl was standing and fainted just now! that SUCKS she is feeling better scary
well hugs to everyone
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I'm still in DC. There is nothing (much) that is sucking here except that so many of you/us are experiencing things (job woes, s/e, depression, BROKEN BONES--for crying out loud, life crap, family stuff, complications, heat waves) that suck. Suck HARD.
I developed this weird Neulasta side effect that caused me to have these mini-spasms/convulsions in my shoulderblade. It looked like I was shuddering with revulsion. My poor niece thought I was passing judgement on her, her internship, her boyfriend, etc. Fortunately, though, the spasms have lessened since I got a little more rest. Speaking of which, it's after 1 am and I need to call it a day.
Miss you guys. Thinking of you.
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Yeay, rock, you're back!! (I know you're still in dc but you checked in!!!! I was thinking we might not hear from you until you got back).
That is a weird side effect. Funny--looked like you were shuddering in revulsion.....
I went to see an LE therapist yesterday and he put me in a sleeve. I am supposed to wear it until next Wednesday when I see him again. I woke early this morning and my hand is swelling. I took off the sleeve until I can talk to him. I don't know nearly enough about this, I am going to go send Binney4, the LE guru, a PM.
Rock, we miss you too. Glad you checked in.
Love,
Sue
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Ladies...so sorry for everyones suckiness!! Everone's stuff sucks - kids, mets, bra's, complications....I'm running on fumes right now (hot, tired, feeling kinda blech!) so my only gripe is WORKING during chemo when its hot and you feel gross.
I hope you all have a happy moment today.
Funny how we now look forward to having just one of those, isn't it?
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p.s. Rock - I hope you are enjoying yourself here...sorry about the weather, it's not what I ordered for you (darn weathermen)!0
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HOLY CRAP! I just got off the phone with the patient navigator at my cancer center. She wanted an update of the tx I'm on, etc. She hangs up and then calls back two minutes later to ask, "How many MORE treatments do you have?" CHEEEEEEEEEEEEESE and crackers, lady! How many times to you need to hear "STAGE IV" and be told "I will be on treatment FOREVER or until it QUITS WORKING"???? I don't hold "civilians" up to the same standard for knowing this stuff but...........this is someone who works only with cancer patients every day. I still haven't gotten her to understand why I don't need a mammogram.........
Sigh
That sucks, ladies.
Diane
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Diane,
I remember Deb saying the same thing, that people would ask her, how long do you have to do chemo....she said she was tempted to say "until it stops working and the cancer kills me" with a big smile on her face.
Sorry you have to deal with a clueless person whose job it is to know better. My wishes are with you today.
Love,
Sue
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Ohhhh...Diane, that makes me CRAZY! Makes my blood boil. I actually have said "Until it stops working and the cancer kills me" to 2 exceptionally stupid people. One of them had the brains to be embarrassed, the other one STILL didn't get it! Both work at the hospital and KNOW better. Sorry you ran into a stupid moron today.....
Where is my shovel.....
Deb C
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Oy gevalt, Diane...
That is pathetic, that your "cancer navigator" would ask you that. Since I've worked as "support staff" in an academic hospital for 22+ years, I'd diagnose the problem as: low pay, no opportunities for advancement. So most people who could be good at that job either quit it or can't afford to take it in the first place. The system is set up to siphon off all the money paid to enrich health insurance co. execs and stockholders -- and keep the medical staff payroll as LOW as possible.
Just my 2 cents.
Sign me,
Disgruntled hospital employee!
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My friend who had her ovaries removed? Yep, still gets asked for the date of her last period.
WE CANNOT MAKE THIS CRAP UP.
Sue, I like Deb's response. If this were face-to-face, perhaps each syllable could be accentuated by use of a TASR or a teeny squirt of mace.
Since it's over the phone, I'm thinking you really have no options except to pick up the whistle we all keep next to our phone (which is normally reserved for pesky telemarketers who do not take "No, I am not interested" seriously) and blow.
Just a thought.
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Goodness! Things are sucking around here, bigtime...
Deb, can I toss housecleaning and laundry into the bonfire? Still don't get why it needs to be done (read: why I have to do it) as the house and clothes just get dirty again, lol. I've got some useless bras to toss in there, too - the ones that got me through expansion, one boob, IGAP mishapen boobs - all of them (times 2 bcause I needed a whole 'nother set for running). Know what I'm wearing now? The original ones I had BEFORE the bilat three years ago...
But maybe all that burning rubber wouldn't be too good for the environment...
Too sad to hear about Janis and Stephanie (tripleneg). I just met another woman - barely 23 years old - who was diagnosed a ffew weeks ago, too. She finds out her staging tomorrow when she sees her onc. This disease so sucks...
mke, hope you are feeling at least a little better. You too, Dani and Otter...
A hearty "That sucks" to all that need it...
Edited to add: Traci, where are you, girl?
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Deb, I also want to toss in a few of my bras. It seems that since I started having biopsies in 2005, I have a wide assortment of bras that don't fit or are so uncomfortable I refuse to wear them. I have 3 'iron maiden' bras from each of my 3 surgeries that are the super compression and go all the way down to my waist. I have an assortment of sports/leisure bras from the mastectomy store that have adjustable bands but I can't get them adjusted just right. I counted my bras and I used to be bra poor - 3 or 4 only that actually fit, now I think I have something like 10-15 and I only actually wear 2-3 not counting the shelf bra camisoles.
Sheila
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Deb, are we going to need an environmental impact assessment for this bonfire?
otter
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Diane, those people don't know crap. I agree with Ann although I've never worked in that setting. How stupid.
I like what Deb's comeback.
As soon as I can I'm gonna get some more bras that I really don't need. You know why? Because my insurance is so crappy that we've (mostly I) met our deductible of $2200 and I'm gonna use it. I'm also gonna get another prosthesis. Heck, who knows. Maybe next year I won't meet the deductible. I probably will towards the end of the year because we have to pay every cent for our meds until we reach the deductible. Hopefully nothing will happen that I'll need the insurance. It's like NOT having insurance....$743 for three months of Arimidex. My onc said it's going generic next year. We'll see. It'll probably still cost $699.99. My insurance sucks. My doc's office couldn't believe it when I told them my woes with this new insurance.
But'cha know what sucks more than my stupid insurance. CANCER! And what it does to families. I'm sick of it! I'm sick of women hurting. I hate any kind of cancer, but this is the one I know best. And I just plum hate it!
Felicia, how is Stephanie doing?
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I have been away for so long! This is my whine. My laptops monitor went bye bye. So I have been having to share my computer with another. So today, my husband takes my laptop to walmart. Goes in with it, buys a new monitor, makes sure it works, and leaves for home proud that he did something nice for me. Well guess what. He left the laptop in the shopping cart and when he went back it was gone.
My second whine is that I am being followed by bc survivors who - well lets say, no longer come here. They are following me around and making parodies of what I say.
I need to go back and read what has happened. I cant help it, I cant give a big that sucks today. I need to give you all a big hug.
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Oh, Nicki, that all sucks horribly! I feel sorry for you -- but also for your DH, because that sounds like something I could do! Buy the replacement monitor and leave behind the laptop I was buying it for... How awful.
About those parodists -- f*** 'em. And forget 'em. Seems like those must be some witless parodies because you're a sharp, funny woman, so what is there to parody???????????????????????
(Okay, so now I'm parody-bait too, I'm sure
. But I grew up one of 8 kids, so... whatever. Sticks and stones, etc.)Shirley, I hear you about high deductibles. Suck-ola.
I'm so very sorry to say that Stephanie reported today that her doctor has suggested she take her dream vacation. But Stephanie said this with her usual amazing grace, asking for everyone else's "dream vacation" ideas, so she can "copy-cat" them, as she said.
hugs to all,
Ann
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Diane - Oh, holy crap is an understatment! That's insanity...like a bad Monty Python movie that's not funny. I'm right there next to Deb with my shovel. Bonk! If she can't catch a clue, we will smack one into her.
Nicki - Oh. My. That's just awful about your computer. And what is this parody stuff? Don't we have enough to deal with, people?! You tell them you know people (I'm half Sicilian, mind you) and they need to back the hell off. The nerve! Deb, bring the shovels over here!!
Shirley - Insurance is sucky. Period.
Sue - I hope your LE is better. Sounds sucky, too.
For anyone I missed, a big "That Sucks" for today!
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Gee...have some catching up to do!
My suck for today......had my one year mammo for left side (remaining one) last week. Got a call this morning for a recall.....yikes!!!! Go tomorrow for more torture!!!
A big SUCKS to ya all who need it!
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So this is where you all hang out when you guys are being real -- and I thought bc made you all saints!
Can I throw out my own IT SUCKS, please?
Tuesday, I went to see my surgeon. I have been seeing him every few weeks since my Mammosite device blew up into a lovely staph infection during rads treatment (it would have helped had the nurse believed me the night before when I told her that I thought I was getting an infection, or if the tech had believed me when I told her I was pretty sure I had infection that morning, but what do patients know?). I had 2 rounds of antibiotics, and it still turned into an abscess, so I finished my third round of antibiotics 2 weeks ago. And the hole is still there. He said that I still get to put drains in, that it still has to be kept open. The rad onc apologized again the last time I saw him, since rads evidently negatively impacts healing. He believes it's still infected.
And now the boob aches again, and the swelling is starting to spread again, and I think I want to scream.
I hate this. Is that enough moaning and groaning?
Can I come back, please. I promise, I have more -- my teenager is studying for her driver's permit right now, even as we speak.
Sue
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My prayers go out to you, Sue. A driver's lic. is God's punishment for having kids who live long enough to be teens.
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