MIDDLE-AGED WOMEN 40-60ish

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  • Eph3_12
    Eph3_12 Member Posts: 4,781
    edited December 2012

    you need to get the dimensions to Barbe &/or Meece ASAP & have them sew you up a better pouch for the dictator-1 with padding & lots of lightweight bling! 

    Maybe this would be a good time to look into medical marijuanaCool

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  • juneaubugg
    juneaubugg Member Posts: 951
    edited December 2012

    Elimar: (((HUGS)))

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  • juneaubugg
    juneaubugg Member Posts: 951
    edited December 2012

    So ladies I've been reading here for months, but felt like an outsider. Now I realize that is bullshit and you will all welcome me... SO HERE I AM! 44, riddled with hot flashes, and trying to move my head into the post active treatment stage of my BC And not live in fear of recurrence. I saw a long term member of this group pass this summer; felt all the love you all sent with her... This disease scares the fuck outta me... But I'm trying to leave any negative feelings in my rear view mirror.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited December 2012

    Oh, Eph, if only I lived in one of those happy-go-lucky stoner states.  I bet if I helped myself to some on the down-low, I'd be the unlucky idiot to get the year in jail AND they'd make me take the "little dictator" chemo pump in there with me.

    juneaubugg,  I remember you!  It's just that this is a long thread and some of the people do go back as far as the first year, but anyone can be as "insider" as they wish here.  Best just to assert yourself and jump in.  Moving into the "maintenance" phase is weird at first.  You almost feel like you should still be doing MORE to the cancer, but before long you settle down and then the day finally comes when your head hits the pillow at night and you think, OMG, I didn't give B/C a single thought today.  You are not far enough out yet, but you WILL get there.  I see you just had your recon.  How's the recovery going?  And last, but not least, that is quite the stylish B&W avatar you have there.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2012

    Eli.....((((hugs!!!))))).

    I agree with EphM. Maybe a padded, sound proofing pocket or bag???

    I love that even in your " tantrums", you sense of humor prevails! "The little dictator"....does it have a mustache? Lol

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  • Loral
    Loral Member Posts: 932
    edited December 2012

    I'm very careful when I shave, very numb under there, the back of my arm also itches besides being numb..Surgeon never told me it would be this way, MO says it's permanent.Great, guess I have to live with it. Where do I find out about PT, know one mentioned it to me...Thanks ladies.

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  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited December 2012

    OMG - Drinking Suprep for colonoscopy.  Smells WAYYYY better than it tastes.  About to float from all the liquids.  Been chugging apple cider.  Down the hatch.

    Elimar - I can just picture your dictator in the pouch.  Had a hospice pt on a home PCA pump.  Bet it's similar.  If I might ask why the constant supply of chemo drugs?

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  • Eph3_12
    Eph3_12 Member Posts: 4,781
    edited December 2012

    E- how about medicinal tequila & lime? whiskey & coke? vodka & tonic? gin & vermouth?

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  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited December 2012

    Elimar - Forgot to wish you all the best of all as you navigate new territory.

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  • Eph3_12
    Eph3_12 Member Posts: 4,781
    edited December 2012

    hey Luv, I had the prep last week for the lovely colonoscopy! Best of luck!

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited December 2012

    Eph, I can tell it's still happy hour where you are!

    luvmygoats,  I think I am on continuous infusion because this drug (5-FU = Fluorouracil) is supposed to work synergistically with the rads I am getting 5 days a week, which it could not do quite as well if I got a big once a week dose.  It has a very short half-life.  Also, the lower dosage is supposed to cut the S/E's down to more manageable levels.  We'll see about that!

    So, you are using a different prep than what Eph or I used.  I got PEG3350, which is a generic of Miralax (and tasted like mothballs.)  Eph got GoLytely, which was polyethylene glycol (just like mine) but had some bonus electrolytes in it.  She knows her way around a cocktail (as you can gather from her last couple of comments...I hear she likes her c-scope prep shaken, not stirred.)   I read that yours is sodium sulfate, potassium sulfate, & magnesium sulfate.  Guess no matter what they use, it's just bound to taste terrible.  I literally held my nose closed to get mine down the hatch.

    LorAll, Any doc can write an order for you to receive PT.  However, ask in advance if they have a lymphedema specialist on the therapy staff and go to that one. 

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  • Outdamnedspot
    Outdamnedspot Member Posts: 297
    edited December 2012

    Hey Juneau...good to see you hop on over to this fine group. Lots of good humour here!

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  • vanstrada54
    vanstrada54 Member Posts: 68
    edited December 2012

    Totally agree !

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited December 2012

    Elimar - I've seen those pumps, they don't look very comfy, but they do a great job!

    Underarm laser hair removal - I'd run that past my doc and LE therapist.

    Juneau - welcome!

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  • luvmygoats
    luvmygoats Member Posts: 2,942
    edited December 2012

    I got something in a box called Suprep. I've given plenty of pts Miralax but never tasted it. I don't think it has much taste. Not too many have objected to it. This was salty and just nasty -  sodium sulfate, potassium sulfate, magnesium sulfate. Oddly enough didn't smell half bad.  Had barium enema 15 years ago and the prep was intense but just not the nasty. Thank goodness I got a bottle of apple cider. Best idea. I have all kinds of clear sodas but the thought of gas on top of this - OWEE. At least I'm not hungry now. And have to do it again at 5 AM. Nothing in there now so what's going to be in there at 5 AM??? I don't seen my DH enjoying this at all next month; queasy stomach.

    Eph's cocktails sound mighty good. Along with my mango jello. Think I get propofol not Versed. CRNA administered. To be an RN I am the biggest chicken of all about anesthesia.

    Makes sense about your chemo. Not an area I know much about. Pain/poop/falling/dementia right up my alley!! Or at least it was. I know on some groups I said this. Quit my job Friday.  Loved hospice, loved most of my pts, did not love the co I worked for. Will be beans/rice at Super Saver for this couple.

    Just realized have not been up for about 7-8 minutes. Maybe slowing up. Gees, hope so.  Would like some sleep.

    You and the mustachioed one attached to you have a restful night.

    Welcome Juneau.  Minimal SEs to everyone tonight.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited December 2012

    Eli- I have never heard of a chemo pump that you have on you for weeks. It doesn't sound pleasant at all. I feel for you.

    I went for my dry run for rads and I wanted to run. I am freaked out that I have to do this again. I get my first round tomorrow. I am going to buy 28 pieces of candy that I like and eat one everyday and when the candy is done so am I. Although I was thinking that I might switch it up and line up 28 shot glasses on the breakfast bar and go that route instead.

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited December 2012

    DianaRose - I decided it was my daily spa treatment, kind of like lying in a tanning bed, while it was "tanning" my chest (and it did), it was killing any residual, nasty, little cancer cells that had decided to stay around.  The worst part is that it's every day.  I like the idea of the shot glasses!

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  • firework1068
    firework1068 Member Posts: 160
    edited December 2012

    You are all brave, beautiful and very entertaining bunch! You could almost call yourselves "eccentric " .....now that's something to accomplish in life!!

    Blessings~Peaceful~Sleep. Nite Nite Sisters, Lorraine

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited December 2012

    Dianarose - the rads "advent calandar" is a great idea.  This will pass and quicker than you can imagine (of course I sleep walked through the last 25 treatments or so...) But strangly, I missed it and missed my techs and nurse when I was done.  It was nice to know that if I had a question, or problem, I'd be seeing the team. TODAY. They were great... that's not to say I'm signing up for another round any time soon, but it wasn't horrible, and I kind of missed slipping away from work 1/2 hour early every day.

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  • juneaubugg
    juneaubugg Member Posts: 951
    edited December 2012

    Eli; that avatar was taken at the Making Strides Walk on October 21. my group was name after the "2012 Sisters" forum. we raised $2,900.



    I see a few of you are back in treatment.... THAT SUCKS!!!!! Eli; 5-FU!? am I the only one who noticed the F U in the meds name?! just saying!



    yes, my recon was least week and I'm still adjusting to the newly sized girls. I went up two sizes....so this is what its like to not to be able to see your belly from above!?



    my big battle right now are these hot flashes! I went on effexor almost two weeks ago, but its not helping. in fact, I think they may be worse! I don't know if I should wait and give it more time or just give up and get out while I can since this is so hard to week off of. Anyone have any experience with this?

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  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited December 2012

    Juneau,

    One of the s/e of Effexor is excessive sweating .. I don't think that it is helping me but that being said .... I was taking it at night and switched to morning and my flashes are more at night now and the sleeplessness is greater ... I am going back to night tine and see what happens.

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  • juneaubugg
    juneaubugg Member Posts: 951
    edited December 2012

    humm... I'm not just sweating though.... its a full on hot flash. I'm so confused.... I just want to be frickin' normal again! not 44 with 15-20 more years of hot flashes to look forward to. aargh... another gift from breast cancer. thanks Joanne

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  • vanstrada54
    vanstrada54 Member Posts: 68
    edited December 2012

    Definitely  not much to look forward to is there ?

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  • Momine
    Momine Member Posts: 7,859
    edited December 2012

    Joanne, welcome, and I wanted to say that the hot flashes have a good chance of settling down. 6 months ago they were driving me nuts, and this past week I realized they were fewer and less intense. So, hang in there.

    Eli, that is terrible with the dictator. I would most sincerely hate that, so I feel for you. I am thinking it is probably so bad that putting some cheetos in the pouch is not going to fix it? Thing is though, if you are going to become a recluse, I think you should go all the way and become a crazy cat lady or something ;)

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  • Momine
    Momine Member Posts: 7,859
    edited December 2012

    Van, I disagree. I have lots to look forward to and I am enjoying my life, hot flashes and all. 

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  • mumito
    mumito Member Posts: 4,562
    edited December 2012

    Just got caught up on this thread.

    Eli ((hugs)) we are all here to help you through this latest battle.I really trully hate this #### disease.

    Did not realize that chemo drugs could be taken home I don't think they do that here in Canada(i could be wrong)

    Try to get as much rest as you can.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited December 2012

    Joanne53, Welcome!  You have come to "Home of the Hot Flash."  It's just ongoing here.  You can bet there is at least one sistah out there flashing at this very moment..  Allow me to be the first to wish you a Happy One Year Cancerversary.  (Even tho' it is later this week, I might forget, so better to get it out early.)

    Momine,  It might have to be "bird-lady" or "fish-lady" because cats = ah-choo!

    firework1068,  I don't know if "eccentric" is a label one ever puts on oneself, it's usually others that make that call.  To the eccentric, the behavior and thinking would all seem very normal, wouldn't it?   Just like "crazy," but without the disassociation and/or endangerment.

    juneaubugg,  Pay attention to what sets off the worst flashes (like maybe a big meal, etc.) and try to avoid that.  You might need a bedroom fan, even in Winter.  Some do find that after a few months, the flashes settle down into something more manageable.  Hope it is that way for you.

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  • elimar86861
    elimar86861 Member Posts: 7,416
    edited December 2012

    So, last night I had to sleep with my "evil papoose" up on the headboard.  I woke up every hour on the hour, skipping only 4:00 & 6:00.  I'm a side sleeper, so several times I was rolling onto my needle side which was not pleasant, and that was in addition to the hourly intervals of waking up.  THAT, I think is going to prove the most challenging in the long run. 

    Already I am a little more used to toting my humming, two pound baby around, and no matter how tired my little bundle of chemo joy makes me, I think I will honestly be able to wake up every morning for the next six weeks and feel IT'S A GOOD DAY TO KILL SOME CANCER. 

    My rads tech knows that I will be greeting him with that phrase for every treatment.  As in...

    Tim:  Hello <elimar>, how are you today?

    Me:  Could be better, Tim, but looks like it's another GOOD DAY TO KILL SOME CANCER, so let's get crackin'.

    And in the unlikely even that I forget to say that, he has been instructed to REMIND me.  Call it my mantra if you will.

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  • TAB55
    TAB55 Member Posts: 198
    edited December 2012

    Eli: Everyday is a good day to kill some cancer!  I hope your pocket dictator does his job.  I hope you're able to get some sleep tonight.  I find when I have a bad night or two due to hot flashes, that the exhaustion helps me sleep through the next night.  I hope you have that too.

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  • LindaKR
    LindaKR Member Posts: 1,577
    edited December 2012

    Re: Numbness - I still have numbness where I had extensive gall bladder surgery 31 years ago (involved wound drains, T-tube for bile to drain and large surgical incision).

    Van - still enjoy every day, despite all the "issues", I agree with M

    Elimar - I volunteer at a cancer center infusion room, we have a fair number of people come in with their little packs of joy, one suggestion I've heard about sleeping is to sleep in a recliner - don't know if it will work for you, but several have said it's more comfortable and easier to deal with the "evil papoose". 

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