Any 40-ish survivors?
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Kim - I've not heard of that pump. I'm going to ask my PT about it. The cording is getting really annoying. Surgery was 7 months ago and I had hoped it would have gone by now.
Profbee, I also sleep with my arms above my head. I always have. It was very frustrating for me not to be able to sleep like that after surgery. The stretching hasn't worked for me
I'm glad your power is back on. 0 -
Welcome ladies!! I really need to start writting down stuff so I can remember who said what...
I too have early stage LE stage 0 & 1...tried for over a year to get help with my LE sleeves and night garments but ended up paying out of pocket for off the shelf garments because I could never find a fitter that would bill insurance for custom garments and I could NOT afford to pay up front for those. I finally met with a fitter who I 'thought' was in network but ended up of of network...I had an emotional break down in her office about not being able to get any help without paying big $$$. Long story short...they were able to get me an Optima LE pump (full jacket for both chest and both arms) because it is such a custom piece of equipment and there was no other compnay within my state who was in network, they were able to get coverage at in network rates...I still have to pay out of pocket for my sleeves and vests. I only use it when I have a major flare because it takes 45 minutes and I am completely immobile for the entire time...did I mention I am claustrophobic?
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Hi Everyone,
I went off to bed last night and missed the last few posts...so funny you all talking about Ambian...I have it but don't use it so ...took one last night and it just doesn't work for me...I have not found a "this will make you drowsy" drug that makes me drowsy...I would love to sleep all night one night.
kiwimum...my pump is called a Lympha Press 201 Max. It is a blue sleeve attached to hoses that fill the sleeve very gradually up the arm.
Michelle ...we were told my sleeves were not covered either..then saw a different girl who put me in contact with the pump people and she said my sleeves would have been covered..I forget how many each year I can get..but we had already paid out of pocket..so yes...it is so confusing and also sometimes frustrating. At least now we know. I have the company name and number now..they will file the claims and all. My LE sounds like yours except in my arm only for now.
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Hi all!
Like the idea of those LE pumps. I'm seeing my nurse at the clinic on Fri. so will ask her about it. My right arm is 62% bigger at the bottom than my left, so quite significant. Doesn't seem to be getting worse though, though we will see on Friday! I have a glove with a full sleeve and fingers which is really hard to get on. Mike, my partner, can do it, so I often have to wait till 7ish when he gets home and wear it till about 2am when I go to sleep - bit of a night owl! If I try I can't get it up to the top of my arm and so have a squishy, sausagey bit at the top which makes matters worse. It's a total pain.
Love to new girls! We're all oldies here BTW! - I'm 44 in Jan, so you're in the right place. Good luck to Kiwi for your rads and your scratchcards. I've bought 100s of those things since '94 or whenever and the most I ever won was £40 on one occasion. You can but hope!
All the best, Sarah xx
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Welcome all newbies - you are all welcome here. I am 44 and have been married for almost (Nov 7) 24 years. We have 6 kids - 21, 19, 18, 13 (14 this Fri), 11 and a 9 year old. Our oldest got married this year and is currently trying to adopt his 7 and 6 year old stepkids. I realized one day that it will figure out to look like he had these kids when he was about 14 years old (but his wife is in her 30's and had them in her 20's) - too funny when you think about it. They love to come to "Oma and Poppa's" house because they have lots of people and toys to play with.
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I am new to this site, although not new to breast cancer. I am 44, was diagnosed first in 2008 when I was 41. At the time I had a 3 year old and a 22 month old, I was still breast feeding. I had children late in life (just managed to squeeze them both in before I turned 40) and this was not meant to happen to my family. I had treatment (mx, chemo, radiation, tamoxifen) and got a year of remission, then it came back in the bone & liver, we found out because although my check up 4 months earlier had been clear, I broke my pelvis due to the cancer.
I have not told the chidren, what do you say to a 5 year old and 4 year old? They know Mamma goes to the hospital, Leo was not happy I lost my hair the first time, and the second time, when we said that Mamma was poorly again he said I was to speak to the doctor and the doctor was not to take my hair away. That said, Leo didn't like my wig, we none of us did, so I stuck to hats. It was winter here in Norway and man was it cold without hair (I used to have long hair before before) My wig itched like crazy and the sweating made the itching worse.
I had fluid in the plueral cavity build up so they stopped the high dose taxol (doce-taxol every 3rd week) and put me on a weekly low dose, after that my hair grew back a bit (much thinner) so the children were happy again.
They know I disappear to the hospital now and again, but are more concerned with whether I bring them a present, which of course, soft-touch-mummy always does.
I haven't worked in over a year as I was having weekly chemo and then my lungs have been filling up. I get irritable with the children, which is awful because they are so little.
Anyway I am here now, and the best thing is to see that I am not the only one ... cancer is a lonely place and although people try and understand they hear cancer and they think death. I can see it in their faces. I think "but I am 44, my children are so little, death really isn't an option"
Heidi xxx
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Heidi, welcome! Cancer is a lonely place sometimes, wish sometimes I could reach out and touch all my friends here when they are feeling low. This is a great place for us 40 something ladies to talk, cry, and laugh. Most of us are in and out on this site, we discuss concerns, brag about our children, complain about our spouses and give unsolicited advice. Hope we can get to know you.
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Welcome Heidi! Yes it is very lonely here in cancer land...so glad you found us and I look forward to getting to know you too. It is so hard with small children because they do not understand why mommy is not feeling well. I hated wigs too and never wore mine either...
Sarah - I hope your therapist is able to get you a pump...I do feel better when I use it but I have to wrap my hand and fingers because the pump pushes fluid unto my hand otherwise. I also notice that I get the same result with my night sleeve if I don't wrap my hand and fingers...
Kmur - There is no one within a 150 mile radius that will bill my insurance for LE garments
now with my high ded plan, it is a non issue since I have to pay for everything any way... I have notice that I am more susceptible to Cold then Heat when it comes to my LE this week has not been fun with all the temperature ups and downs...0 -
Welcome to Heidi - feel free to discuss anything on here! Hugs to you,
Thanks Michelle, for your pump tips! It sounds like you have it like me with the puffy hand - so annoying. I don't wrap my arm at night, but did have it done by the therapist in June. She wrapped it too tight and I had to have it cut off at the hospital. So that was a lot of good!
Love, Sarah x
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Oh no Sarah! That is way too tight if it had to be cut off! I HATE wrapping but sometimes it is the only thing that helps...as long as it is done right! I do find if I get over zealous I wrap too tight and it does more damage then good too... 0
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Heidi,
I am so sorry you have to join us but am glad you have found us as these boards do make things a little less lonely. Friends & family are great but they really don't understand like those also going thru this. Hope you find as much comfort in these boards as I have...
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Heidi ...Welcome to this group...the ladies here, as you can, see are very kind and supportive..sometimes funny too..just when you need it. I agree with the others..this can sometimes be a lonely road, but I hope maybe the girls here can make it feel not as lonely ( hope that made sense) I did not wear a wig either..I just can't carry off a wig..so I did hats and scarves.
Michelle...I just think that stinks that you can't get one..I sometimes get so bothered by all the insurance stuff and what "will not be covered" I probably shouldn't even get started there.
I learned to wrap my arm too and do wrap sometimes. It is hard to wash hands and all that with the wrap so I usually do it at night. I hope something can be done to help those with LE..
Sarah...That would be disappointing to go through that only to have it too tight.
I wish we were all closer...I may not be a trained LE specialist...but I sure know how to wrap an arm!! Lol ( I know that's not really funny )
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Just thought of a terrible joke, Kim! If we were all nearer we could meet up for a "wrap"party - not the exciting kind at the end of a movie, though! Think "The Mummies Return", maybe!
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Kmur and sarah, Invite me to that "wrap party", maybe right after we are on the Ellen Show, then we will make a movie. I am feeling like a superstar tonight.
Got a haircut and color tonight, my hair dresser went a bit crazy on the cut (went from mullet to short boy cut), but loving the color.
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BTW, she even used the blow dryer for a minute!
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What colour is it, Christine?
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Hello, Heidi! Welcome aboard! My son is 5, and the hair has been the worst part of it for him too. He used to twirl my hair when we cuddled. He twirls his own now.
I know we have different diagnoses, and I can't understand all you're going through either, but I'm here to listen! And you're right...you don't have an option...you gotta do this. That's helped me a bunch of times. I have this little boy, and I gotta do this. Now you have some friends here for company! 0 -
Hi Girls, new and old alike!
I am alive, thank G-d! It really wasn't as bad as the BMX. I'm such a rock star now. Look at me. F you, Cancer! I had the robotic surgery ( I asked where Rosie the Robot was as they wheeled me in to surgery. Maybe they gave me a little more verced than usual, just for fun:). I have four tiny little incisions covered with bandaids on my abdomen and that's it! No huge gash across my stomach! The only drawback is because I don't have that, I think I'm Superwoman and try to do more than I should.
Today I went to my pre-op appointment for my exchange! Two weeks from today I'm trading in this bra of pain for squishy hooters! Im trying to get myself up, but the truth is, I'm tired.
Ok, that's my report for now. Be well everyone! I miss you ladies!0 -
YAY Christine....I recently have used the hair dryer..isn't that funny the things like that we have not done in some time...I'm up for that party after the Ellen show girls we could really WOOP it up Lol !!
Miss you too Eema...that is amazing how surgery like that is done...WOW...I hope you continue to get better and better...
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sarah, my new hair is a dark brown, with a hint of red. It is just a demi color?, so it won't last but a month or so, she was afraid to try permanent color yet. She refused to charge me, said it is her way of "giving back", so sweet. I have been going to her for years.
Eema, we have missed you, and of course your sense of humor. Glad you are doing well, no wonder you are tired, look at what you have been doing. I am so happy you will get your squishy girls soon. From what you have described your current ones sound alot like the TEs. Are you getting silicone or saline?
So, since I don't see enough doctors (LOL), I am going back to an allergist tomorrow. I was referred to him after an unusual allergic reaction (intraoperative rash and hepatitis) during/after one of my early surgeries. He has done a ton of blood work, tomorrow I will have skin testing and then stay for 3 hours, for results of this and blood work done almost 2 months ago. He is an acedemic type, last visit he showed me the power point presentation he had on pennicillin allergies. Good thing I appreciate smart and nerdy guys. Went online today and found out your can get really cute allergy ID bracelets, so I will look at this as a shopping opportunity and day out of the office.
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Eema! Welcome home! You sound great!!! I can't WAIT for my squishy pair! I went out to Vicky's Secret today to get a bra for these TEs--just hating them so much I thought maybe a cute bra would make me feel better about them. We'll see!
Anyway, it's so great to hear you sounding so well!Christine way to go turning a dx into a jewelry shopping opportunity. LOVE it.
G'nite pals!
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I'm sure adding a doctor was what you had in mind....... Lol ..I hope he can figure something out for you..how is the pain you had in the tail bone area?
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Glad u are home Eema and doing well. Countdown to squishees!!!
Profbee - Let me know if the VS bra works as I too hate my TE's... So dang uncomfortable and I swear the right one is trying to puncture a lung....Good thing I get rid of mine in two weeks too..
Christine47- Buy yourself something pretty, you deserve it...
Sweet dreams to all (chemically induced or not
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Sarah - count me in for the 'wrap party' heading to the medical store tomorrow for more gauze
Kim you wanna come give me lessons on wrapping?
Christine - wooowhoooo for new color...I am glad you like it.
Yay Eema on one successful surgery down and count down to yippe squishy!
Hi profbee!
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I know I have said this before...but I wish we all lived closer...we could have a wrap party/lesson session discuss which tattoos we're getting,have a drink,see Christine's new color and we could just laugh OH and show and tell...forgot about that...at least we can appreciate good work.
I forgot to say Michelle..my LE is opposite..it is heat/humidity that gets me....It bothers me...and I enjoy all the yard work...I just have to think differently now...
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Wow, you all have been busy since I have been able to be on here! First let me say welcome to all the new girls! Though you probably aren't that new anymore, I just haven't been on for a long time.You have joined a wonderful group of girls. They are funny, loving and supportive when you need it!
Eema- glad you are doing well and recovering. I am also so excited that you will be joining the "squishy" club very soon!
Can't way in on the LE talk. I have LE, but it seems to have decreased to nothing the further away I get from chemo and surgeries. I am thinking that most of the swelling I was getting was just side effects for it all. I would go crazy with the pump though. I hated the ones they put on your legs during and after surgery. I always took them off as soon as I could. But I know it must be a relief to those of you that can't get it down with the stocking.
Have been brave enough to color my hair yet, I am afraid of damaging what I do have. Also my color before was a lot darker than it is now, so I might have to get there gradually. Don't think my DH would go for me getting it cut to shape it just yet, he LOVES long hair so somehow someway I am going to have to get through the even uglier stage to get it longer again. Well, I will quit boring you. Hope everyone is having a great afternoon/evening/morning or wherever you are in your day in your part of the world! Take care!
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I guess I could introduce myself to the new ones and reintroduce to the ones who have been here.
Mamachick is a nickname my DH gave me when we started having kids. I have 3 children. DD12, DS9,DD7. I have been married 14 years and will be turning 42 in one week. Was diagnosed at 40. Had a BMX and chemo, no rads. 0 -
Pleased you're home safe and sound, Eema. Hugs to you!
Re: hair - I'm 15 months post 2nd chemo and 8 months into taking femara (post meno.after rads to ovaries) and my hair is driving me nuts cos it's thinning! Very annoying side effect! So it's growing on my chin and leaving my head - nice! Still, it seems to be working anti-cancer-wise.
Sorry to get a bit political on here, but I've just been on the UK Breast Cancer care site and seems that a popular TV show here called Loose Women has been discussing BC on FB and maybe on the show too. Seems that all the comments about recurrances or secondaries have been removed by mods! I am pretty annoyed about the attitude shown here, especially when I read about how lovely women are suffering and dying with mets. I know it won't mean much to you girls on here, but I thought I'd share it! We all know that it just isn't - Hey presto! You're cured!
Hope I didn't depress everyone,
Sarah xx
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Sarah- I hope I am understanding you right, but I agree with you if they are removing comments about having secondaries and mets. I watched the movie Five on Lifetime, not sure if you get that in the UK, but the movie seemed to brush over stages over 1 or 2 and made look like if you live right everything will just be okay. They shouldn't brush over what women are really going through when dealing with this disease. Others may have gotten something different from the movie, but I just didn't see the reality in it.
Also in meno and think that my hair may never be as thick as it use to be. Have the chin hair also, but as of right now it is only one! lol
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Funny Mamachick, I thought the same thing after watching Five. It seemed to leave out or skirt over some details but I thought maybe it was just me...
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