Im bitchy, I moan, I groan.....anyway.
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hi there,this is my first time so here I go.It Sucks big time I have finished my chemo and rad and have started tamoxifen last week.I thought the worse was over until everyone one thinks it'sall over and you should be doing everything again.I feel so dam tired I can't stand to look in the mirror or have sex for that matter,even with the doctor saying you have to use it or lose it.
I just want so bad to hid in a hole for a while just so I can come out all new.And does anyone have feet that just hurt so much you can't walk by the end of the day.Feeling a bit better just by writing this.thanks for reading.
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Connie 07.. i had a major breast reduction before bc. years ago. i mean, the girls (whoeventually tried to kill me) were huge!! i ended up with a 36 DD AFTER reduction,, you do the math! so, as far as the surgery, it wasn't terribly painful, and all my feeling returned a little after. the hard part is.. or maybe the good part, if you have help, (i didnt) no bending over, lifting, or VACUMNING for weeks after. that's what the pain comes from i can tell ya from exp.. i worked too much the first wk; and paid dearly. didn't do it again. you can pm me , if ya wanna, or ask me anything here.. id even show you; did that for many women.. can't now, though.. thy're both gone, now..
the single, most hurtful thing ive had said to me came right outta that. after i was dxed, a friend (hairdresser) said to me "you've been known for your big boobs and thick, red hair for years.. now, you'll have neither!! what'll you do? i told her.. i'll go on and live! and never saw heraagain! those words STILL haunt me.. the boobs are gone forever, and it looks like the top is so thin, and might not come back, in my hair.. i sure do miss both of those things. am still wondering who this girl in the mirror is..lol
Chevy Boy, as per some of us questioning.. i had plenty wrong with me before bc. as you know, i have advanced MS; so a lot of it is that. i also lost almost 100 lbs using aspertame, a few yrs back. have 50 to go, but don't know when that'll be, or f... my point is, i had my first stroke over 20 years ago, when i was dieting,. and they blamed it on the copious amts. of aspertame i consumed that year. it was so bad, i had to learn how to walk and talk all over again!! that stuff is deadly!! and, its' cummulative in THE BRAIN.. many many volumes have been written about it!! you're right on with that one! ta 3jays
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A new week coming, with spring and pollen in the air and on my car. So glad to see some new names in here, and welcome to some I"ve met on other threads...
Chevyboy! How the heck are you? I've missed you. CAN YOU HEAR ME NOW??? Man, that SUCKS. I've never read hearing loss as an SE. Will it come back? Got to, just has to. How will you know whos winning the race. BTW... My son, and either me or DH will be traveling your way April 18 for one or two nights. It will be stressful, but if there's a way I would love to meet you face to face. We talked on the phone once and your hearing was fine, that was last summer. I sure hope it comes back.
ss69 WELCOME to the one place to vent all your frustrations to gals who will commiserate, offer sympathy, helpful tips and lots of laughs. Once you get the venting part going, it's hard to stop. This has been my fav thread since I joined. (thanks again Traci). We know fatigue. Best friends forever. Fatigue SUCKS. And it can last a long time and if you aren't diligent about exercising, it can add up and really take a tole,not to mention the depression it causes. The Doc was right on with the use it or lose it, cause after you finish menopause your delicate tissues begin to atrophy, especially with non use. But who want's SEX? I used to be the aggressor. now, he'd better plan ahead and go really slow. ... sorry if TMI. I'm still hiding in my hole a lot of the time. Not a good thing, aids depression, then the hole gets deeper, slipperier and DARK. Just give you some you time. get a massage, whatever makes you ... Boppbah............ I feel like a woman.
3jays - thanks. I love the graphic details. Vacuuming is out!!! I'm in. I hate to vacuum. That's not really funny. I could sit out for a while, read, type, work on making jewelry pieces. Just afraid of the rads tissue getting cut. all those lymph glands getting cut and the nipple part is scary cause I do NOT want to lose sensation there. Not crazy about itty-bitty-titties (I'm a 40DD) but sure would't mind having some of this weight off the front. I've had one neck surgery and know the heavy bosom plays a part in that. Worried about more scar tissue and complications. Had my share of those. And Aspartame?? which one is that blue or yellow? I've read that stuff is horrible, but if you are diabetic what can you do? That Truvia is nice but pricceeeey. Honey is so messy. I like a little coffee in my sweetner.
Susie - A STROKE!! That's horrible for a side effect. damn, How old were you when that happened? My daughter had a stroke at 27, but she seems to be doing fine now. Thank God. She's 30 now.
Mary - yes, change in the work force is stressful. It's a lot like moving in with someone you've never met. Good luck with that. Maybe take it as a new beginning, and how hard you work so they notice. Or just stay out of the way until you know the new climate. bummer. hate to lose a good boss.
Barbe - I meant tell me about the interstitial cystitis shot!! What is it? was it expensive? and how often do you have to get one?
My epidural went well. the doc was awesome nice and talkative. He seemed really interested in what was going on with my back and for how long. Then he did the injection and i watched it on the screen. WOW.. fasciating. A long flexible needle went in at the lowest sacrum spot, moved up like 8" to a small void and then he injected a dye to make sure the invisiblle meds would go where he wanted them to. then he started pushing the meds in. little by little.. OMG... STOP. then I'd do the childbrth breathing and say, Ok. keep going. this went on aboout 6 times. they said i was doing really good, but muther-fV@#&! it hurt, hurt, hurt. I guess I'm just a wouse but they said I did good, for whatever that's worth. certainly not worth a discount for not screaming. Or threatening the doctor. (heeheehee).
I do feel better though. after the swelling and initial pain went away, I had a good day. YAY, Yippee for me. It was totally my turn.
Morning to early risers! I won't be back til tomorrow, later on.
Sleep tight.. ~Connie
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Good Morning gals!!!! Hi Dutch! I'm almost 74...& that sounds soooooooo old! Dangit! But I feel much younger, & still tromp around my gardens, whenever SPRING decides to get here!
And I've always felt great...Even the breast cancer didn't get me down...not like this hearing loss! I have researched it all & have lots of papers to take with me to the Oncologist & Radiologist...I just happened to see an article called Tamoxifen, Tears and Terror, by Betty Martini....I found her email, & wrote her....and Yes, she knows about everything it can cause...But she has written many articles on Aspertame and it's link to BC....So man, I didn't use it this morning....SHE thinks Aspertame caused the BC in the first place...I don't know about THAT one...but you know, everyone has an opinion....I probably won't hear from her again, but it was nice that she did return emails...like 5 of them!
So 3Jays....I had read articles about Aspertame, but it really hit home yesterday when that Author told me about it again! I'm so sorry about your stroke! Geez, we can learn so MUCH on here! You are so right....You have been through the worst of it...I know...And your hair-dresser? You should have shot her on the spot... Wow! I remember a little "friend" of mine once asked..."why are you so ugly"....and yes, you never forget it. She used to charge my brother and I a penny for a piece of that Fleers Double Bubble gum...! And she was our neighbor! SHE must have grown up to be your "hair-dresser!"
Hi Connie!!!!!!!!!!! how ARE you? You must be in so much pain with your BACK??? I had to have a double-laminectomy about 15 years ago...but that is just a memory now!! Sorry about your shot...Did it help? What did you get? Was it cortisone or what?
And read what it says on the packets...Mine were from Walmart, & it does say Aspertame! Don't use it...Use either sugar, honey, or that "Blue Agave"....Or use some sort of sweetened syrup...
Hi Chabba....Thank you! Yes!!!!!!! In about 10 hours I had better have those damn hearing-aids or I'm going to go after him with a radial saw! Ha, ha! I'm going to call first, as soon as Costco opens to make sure he is there...I'm just so TIRED of waiting!!!!!!! And not hearing!!!!! I'll be back!
My friend sent me this!
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Connie, you can't get a shot for IC!!! It is years of treatment. I haven't been diagnosed yet and my urologist sent me a letter changing my appointment! doi!
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whats IC? so much stuff besides b/c what do i have to look forward to
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Okay, I can't be bitchy or moan & groan anymore! I picked up my most gorgeous hearing aids! And I can HEAR!!!! Any of you have problems just try Costco...even the hearing test is free, & the price was a LOT better than anywhere else... I could even hear my hair against the collar of my vest! And I could hear me walk, even with crocs on...Ha, ha! It's just been soooooooo long.
So now I'm happy!
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Great news Chevy!!!!
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I cried when I got hearing aids years ago. It was very emotional. I only used them for about 3 or 4 years. It's tough. When the batteries go, there's a dead silence in one side of your head and when you take them out at night it is so quiet! The batteries were expensive (though tax free)...and I heard TOO much when I worked in a big store. I will get them again when I'm a bit worse.
My deafness makes me very good in sales; I am very focussed on my client and they often say how well I listen!!
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Glad the hearing aids are working well!! But that so sucks!
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Happy for you Chevy.
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Beacher, don't worry, it's not BC related. IC is Interstitial Cystitis, a potentially serious condition that typically starts with multiple urinary tract infections (UTI). After menopause UTIs can become a problem. Sometimes it's hard to tell the difference between a UTI and vaginal infection that results from menopause as well. ICKY TOPIC.
Chevy I'm so happy for you. What a relief to hear again! I wonder... did one of your other senses get stronger when the hearing was lost? Like more seneitive touch? or sharper vision, or smell? Now that you can hear, will that heightened sense settle back down, or will it always be stronger? just curious.
Barbe!!!!!! Hearing loss TOO? Jeezeus girl, is there a medical condition you haven't experienced?
WHY do events,parties, opportunities and items one desires always go on sale when I'm broke? I'll just have to quit reading the Sunday paper and drooling over the new leather furniture. I want a red leather sofa or loveseat, one that reclines independently on both sides. I could go with a hunter green but I WANT red. I've been trying to find one, even a chair, on craigslist but someone said that since there is a national bed bug problem that you have to be extremely careful buying pre-owned furniture. That's a deal breaker. I'd rather wait til I can buy new. Which could be never. ...sigh.
Connie
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Hi Guys, Thanks! Barb...I have the Bernafon over the ear type, & when a battery gets low, it is supposed to "beep"...and YES! It WAS so quiet when I took them out...and like now, when I'm on the computer before DH gets up...but when it is "quiet" anyway, you don't notice.. He gave me 2 packs of batteries...they cost $9 something for 30 of them, & they are supposed to last about a week...Do you mind my asking, how did you lose your hearing?
And yes, it is quite "different" now that I can hear...things seem pretty loud...I'm always turning around wondering what THAT is...It was the sink faucet, DH turned on...I can hear the refrigerator humming...(and that drives my DH nuts at night! But he could hear a flea fart in a wind-storm.
Hey CONNIE!!!!! I don't think anything else improved...Ha! When this happens, you try so hard to just "hear"...then you feel so sad, because you KNOW what is going on, but you can't help it. I trying to "understand" all those words when someone speaks to you, is like trying to unscramble a puzzle....
Hi Ruth! Say "Hi" to my Daughter & my Grand-sons, Okay? They live in Dr. Phillips area! I LOVE Orlando.. You know, my aids even came with a little "dryer" in case I fall into a pool somewhere, Ha! My DD has a beautiful pool, that no-one even goes IN!
Have fun gals! It's nice to talk to you...I mean now that I can hear....
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My aids were in-the-ear. They made a mold of my ear with some green foam so they fit perfect. I had a tiny hand-held remote for different noise situations - churches and movie theatres are supposed to have a special amplifier that only these types of hearing aids picked up. So in a car, I'd only hear radio and voices and not the tires on the road. Very sophisticated and expensive at the time; over $3,000 about 16 years ago.
I have what is called a cookie bite hearing loss. It's like someone took a hearing chart and took a bite out of it. I hear very high highs and very low lows and not well inbetween. I can hear a motor running where my DH can't and he'll go looking and find what it is. But he can come up to me in a mall, stand behind me, ask what I'm looking at, and I won't even know it! Some TV ads go right through my brain - I guess a dog whistle would be audible to me......huh! When I got my aids I had to keep telling the kids to stop yelling in the car; they said this is how loud they had to talk for me to hear them from the backseat!!
I was beaten as I grew up and sustained damage to my jaw and ears so that's where they figure the damage started. I have no interest to have surgery so close to my brain. I like my quiet world, it's not total....
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Oh Geez Barb...I'm so sorry... I could hear fine, until I took the Tamoxifen for over a year, then within 3 months, I lost 100% in my left, but only 50 in my right...Yes, it IS quiet without them...I know what you mean... So you have permanent nerve damage also.... No, I would not have surgery either...not in my head....I'm just sorry about the reason you lost your hearing.... I mean that's sick....
The aids you talk about sound very high tech for when you bought them....I guess these are really good, just that everything DOES sound "different"....But I wanted to hear. They fit behind my ear, & into the canal with a teensy tube. I understand why you don't wear them...our hearing is all different.
I just have to get used to them....I could not hear "low" tones before...or low voices...So 1/2 the time I just SAT there on the couch saying, "yes, I know....yep, that's right"...okay, WHAT was that?" Not now, Ha! I jump out of my pants when he shuts the cabinet door, or runs the disposal...But so far so good.....hugs Barb...(((((Barb)))))) xoxoxoxoox
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Thanks Chevy....
I like the idea of a 'beep' before the battery goes. Without it, I'd be walking then all of a sudden NOTHING on one side of my head. You get unbalanced and I'm glad it never happened when I was driving. The tiny remote is now replaced by a watch that you touch to change the settings. They had a special phone setting because without it you would get feedback like an amp sound at a rock concert! OUCH!
I really need to look into what is available today. Usually I either don't talk in a crowd or dominate the conversation so at least I know what's being said! So many people talk softly; some use it as a power thing, but I can't hear them. Sorry folks! I just smile and nod until they get a horrified look on their face and then I say "run that by me again, I missed that". I don't hear probably 3/4 of what I am supposed to, but when I'm one-on-one with my clients it's good.
Funnily enough, I wear ear plugs at night!! My DH snores and I am too aware of things like the furnace or fridge coming on and it wakes me.
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Chevy-want to trade houses for a month???? Not loving Orlando.
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No Kidding?? Is it because it is hot most of the time? I just love it because our oldest Daughter's family is there.... 0
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Yes, hot hot hot. And humid because of all the lakes with the heat. ugh. Great place to visit tho!
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Good morning all. Both my sister and my 76 year old aunt have hearing problems. Its frustrating since my sister will not acknowledge that she hasn't heard you and my aunt will not stay focused! My grandmother was hard of hearing due to quinine she took. It damaged the nerves and there's no fixing that. I really don't mind repeating myself or talking louder - just tell me you didn't hear me.
Barbe ((((((((((((hugs)))))))))))))))
Although if I don't keep Advil levels up I can hardly walk or move but after hearing what some of you are going through - I am now shutting my mouth!
Very gentle hugs to all.
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Kathleen we ALL have our crosses to bear!!! We EACH have issues that affect our everyday living. If I really listed everything wrong with me you'd swear I was lying! But when someone brings something up that I can relate to, I'm happy to give feedback. Remember, one of the reasons I didn't get recon was due to health issues I have (and my hearing had nothing to do with that!).
Having said that, I'm glad that Advil can keep you moving! You go, girlfriend!!!!
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Morning gals! I just wanted to ask a question here....Do any of you take either Femara or Arimidex? I'm so afraid to even TRY them right now. I go to the Oncologist tomorrow, & I know I'm going to sit there & be afraid to tell her that I just don't want to DO it anymore! And she will probably say "Just try it."
I am going on 74, in a HURRY it feels like, & I want to think that I don't want anymore SE's .... I can deal with losing my hearing loss, because I have the hearing aids...And if I get cancer again, or I fall off a mountain, I can just deal with it...But this "prevention" stuff is kind of driving me nuts!
Oh, Barb! I know what you mean now...about how quiet it is without them in...It's nice to hear with them, but at night, all that "noise" can be shut off...Ha! Or in a restaurant! I could hear every little sound within miles, it seemed like!
But man, I hear & read about so many SE's with those other drugs! Can you all tell me what you all are going through?
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"that sux.....listen to my crap"
So, this is my 6th day in the hospital for chemo related side effects gone wild!! I have some sort of weirdo alien red rashy looking phenomenon going on with my hands and feet. It's not Hand and Foot Syndrome either. It's on the back of my hands not the palms. It started looking like cellulitis and I also had been very sick with a high temp, so I decided to pay a friendly visit to the ER. The receptionist took my info and I also told her that my blood counts had been very low as well and that I had been puking and not been able to keep anything down and my nose would not stop oozing blood. She promptly told me to have a seat in the lobby. They are supposed to take patients back based on condition so sickest goes first. Well, my husband and I sat there for a while. My hands burning, my nose bleeding, me being nauseous, shaking and there we sat while people who arrived way after me got called back before me. My husband kept asking her when was it going to be my turn. She just kept saying "I realize it looks like others are being called before you but trust me, there is a reason""..."there is a certain order we do things around here and it all works out" So after about an hour , we are still sitting there. Finally a trauma nurse comes walking through the lobby and sees me sitting in the wheel chair holding my red burning hands up and the blood all over my face and on my mask. The nurse immediately yells at the receptionist and asks why i am sitting in the lobby when I should be getting treatment. The nurse takes me back to the trauma center and they start working on me and the doc reads my papers and sees the time that I came in and asks why I am just now being treated. The trauma nurse tells him and he goes ballistic and starts yelling. I believe the receptionist lost her job. So I get admitted right away and turns out that if I hadn't went into the ER, I probably would have died. My platelets were less than 10 and my hemoglobin was 5. I have had several units of blood and platelets, antibiotics, fluids, skin biopsy and MRI.
So here I still am!!! They still aren't sure what the "rash" is on my hands and feet but they know it's chemo related. The blood counts are still very low and rash is slowly healing as the skin is sloughing off. I am so ready to go home! I'm just angry with the whole thing! I'm frustrated at the way I was treated by the receptionist and I am mad because I want to go home!! I'm uncertain about my chemo treatments now and which one has caused this. Most of all I'm enraged and furious at whatever went wrong in my body to allow this BEAST to overtake me!!
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Oh my goodness, alamik, that is beyond irresponsible what that receptionist did! Even in this economy, I hope she lost her job, because withthis kind of behavior sooner or later someone will die because of her whims!
Now, after your experience, my vent will look like nothing and I'm almost ashamed I'm still wanting to vent.
So, alright, after the surgery last week on Wednesday, it was the first day that I was in no pain whatsoever, I could move my arms very nicely, and after a quick cleaning the kitchen, I decide to to Lowes to look for new additions to my garden this year.
Got soem stuff - didn't get any irises as they didn't have any, and I had noticed when I got out of the store that the air smelled like hot lumber. You know, that smell when you cut wood with a handsaw.
I get home, and guess what? There were wild fires all around where I live. And all I had wanted at that point was to just lay down and take a nap.Not to talk about the fact that my sweetheart had already left for their training camp before deployment. So I spent my afternoon glued to the news and to the phone (used to work for the State emergency management and all my co-wrkers there were keeping me updated on what is going on) - with everything ready to be loaded in the car in case I need to evacuate. Taht, on top of the horrendous morning news about the Japan earthquake.
Bad, bad afternoon. Can't even rejoice anymore about the nice pink-and-white daffodills I bought or other stuff.
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Oh Day!! ~~~~ Of course you have a right to vent. Here you were feeling good after so long and you were getting excited about doing some gardening and you were probably feeling stimulated and alive, And then BAM!!! Now you are dealing with a potential evacuation from a fire and on top of that, your loved one just left for training. It was like a glass of cold water in your face after you were just feeling so good and productive. Then of course the tragedy in Japan. Its hard to stay in a good mood sometimes with so much going on. I hope everyone was safe from the forest fire. I just know that you will feel better when you get those beautiful daffodils planted!!! And maybe Lowes will have some Irises next time you go back. I should try to plant me some beautiful flowers this Spring too!
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Its been awhile since I posted, was out of town with work and now I am home getting caught up- for all of you with family issues you posted about- toxic people- my therapist suggested a really good book to me called the Narcissitic Family by Pressman- its a little pricey- I found is used on amazon for about 25 bucks-Its basically about families that function to meet the adults needs not the childrens'- if you grow up in one of these families- you learn that your needs/wants don't matter. Some narcissitic familes are overt- causes of abuse and alcoholism, but often the pattern is subtle- not visible to other family members, neighbors- everything looks hunky dory from the outside, but you grow up feeling worthless cause you learn your needs aren't important.
My family was definately in the latter category- I still feel guilty for feeling like my childhood was crap when I had a nice house, good clothes,not beaten or anything- but I just learned to swallow my feelings andlive in my own little world. Now as an adult , I have been lucky and have wonderful functional supportive relationships with friends and wonderful DH-I go visit my mom and she cuts me off in conversation, changes the subject so its always about her. etc. Its not as bad as many other's relationships, but its a hard process to try to detach myself from her BS and her drama and not snap and go off on her.Understanding the dynamic helps tho-I found the book to be very helpful.
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Hi all, alyad- what you said: but its a hard process to try to detach myself from her BS and her drama and not snap and go off on her. I hear that!!! I've hired help for mom because whatever I do for her is never good enough. Thanks for the resourse recc, sounds right up my alley. Had a senior counselor tell me that if I understand whats happening to mom, I will be able to care for her without anger. BULLS#!+. When I try to "get over myself" (supress the hurt) and do right by her, I am immediately critized, sometimes called names & she starts ragging on my grown kids or worse, my DH and the momentary peace and loving feelings fall off me crashing to the floor. I've been married 35 years and mom still thinks hes not good enough for me!!! OR Her!!!!!!!!!!! Because of the way she treats me, he either defends me or will snap and go off on her. Then the vicious cycle reboots and starts all over again. I've actually considered moving out of state so she is far, far away from us. Thing is, I'm pretty sure that she has little clue how badly she hurts me. Because its been in this cycle for decades. I dont expect her to change, but I'm exhausted from everything now and can't tolerate her. so sad. I miss not having a mom. esp when shes still alive and right around 3 corners. Then I remember missing not having a mom in the 80's when I was having babies, crying for her and her not coming to help. I know she expects me to keep on taking her abuse, I've accepted it for 57 years. But its time for me now, I need me time to relight my spirit and accept my own flaws & ills rather than carrying hers. oooooooooooo didnt mean to get all psycho about it. thx for the book tip, I will check it out.
Hey Barbe- the inj wasnt as bad as anticipated and it has relieved a lot of pain. YAY.
Now my PCP is concerned that I have have early kidney damage. testing me repeatedly due to microalbumin increase in UA. THATS SCARY. Haven't they invented a get well quick pill YET??
Alamik - That truly sux. I found the best way to get attention in an ER is to be screaming mad AND crying loudly. but admit even that doesnt always work. maybe if you had puked on her desk?? theres no excuse for that staff persons flawed choices. I hope she did lose her job, there are plenty of good unemployed to replace her & she was wrong. receptionists shouldn't do triage.
`Connie
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Connie, my mom was the worst! I finally learned how to disconnect the wires so she couldn't push my buttons. Went over with DH when we were in Vancouver, and we sat and watched her trying to rip me apart without any feelings on my part. She just got worse and worse!!! It was pitiful at first and then became downright funny. When I didn't react she was like a Tasmanian devil spinning around and trying to get my attention. Way too much fun!!! heheehehehehehehe
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Compared to y'all's my mom really isn't that bad. She loves my DH and has said things like "I don't know what you did to deserve him". She exhibits other jealous behaviors that I have found the love she never had. Its hard to be mad at her for this-I feel sorry for her- she's had a series of men who didn't love her and were unavailable in some way- including 25 years with my dad. But on the other hand I can't blame them. She's never made me feel anything but guilty and in the way. I guess for me the conflict is - I can see her as this hurt child who never felt loved and all of her BS is her trying to deal with that, and I try to feel compassion for her, but when it comes down to it- I feel like everyone has a duty to face down their own baggage and say it stops here-I have a choice about how I live my life and even tho I had a shitty childhood, I don't have to let that define me.
I guess I just feel like she's not strong enough, or smart enough.I feel like she's unwilling to face anything painful - she'd rather just sweep it under the rug.I feel like I earned the wonderful life and DH I have because I've been willing to be honest with myself and face my fears. But if having bc helped me with one thing its perhaps learning to have compassion for others-but its really hard to have compassion for someone who doesn't seem willing to do anything (in my eyes) to help herself. My dad is an emotional retard as well, but at least he admits he's screwed up in the past and still has a lot to learn. He's been in AA for 20 years and at least he tries to connect. He pissed me off something major this year, but I am lot more able to forgive him than my mom.
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I haven't been on here for awhile. Hope everyone is doing great!
I have some GREAT news! for anyone who hasn't read my status report on Facebook:
Today is my FOUR year cancerversary! On March 15, 2007, my surgeon took IT out!! HURRAY for me!!
I know this isn't a B*TCH!!!!
Harley
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