GRRRRRRRRR I HATE LE..........
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Thanks Estepp and Suzybelle...your kind words are much appreciated
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Suzy... lol.. great share!
Others think I look , um, the same.
I , on the other hand, do not.
I have never cared much about what others think. I do , however, care a lot about what I think.
I believe I need to lower my standards and deal with it , eh?
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1970.. I just want you better!
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Laura, no -- don't lower your standards. Just change them. They can be high, but they just have to be NEW.
IMC, what a load you're carrying! Do you have a good therapist? Have you done a therapy intensive -- or are you in the middle of one, perhaps? It's a rough road and a steep learning curve, but we're sure here for you. Tell us how we can help!
Gentle hugs,
Binney0 -
Jo, I order my WearEase products through my fitter so my insurance pays, but their website is here:
http://www.shop.wearease.com/category.sc?categoryId=2
Nice people to deal with.
Bonnie0 -
IMC, I'm so sorry you're carrying this double whammie. It isn't right. At all.
Suzy, you are not a goober at all.
(((((Laura))))) You will make it thru this. Without lowering your standards. Like Binney told IMC, it's a steep learning curve and it doesn't matter what element of BC you have to deal with. It all sucks and we all have to find our own way to cope and live with it.
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Thanks guys-I just don't know where to turn. My arm is getting worse by the day and the docs at the hospital don't seem to give a damn. My CT results says there is fibrosis of the muscle (above my breast) but they think it's because of the cancer. I'm like what about lympedema???? So now I am enduring chemo and the incredible pain from my LE. I'm going to try and ring around today and see if I can find a therapist. I haven't seen anyone yet. Six months ago when I said to the onc I was having pain she just told me that they don't deal with the pain after surgery. I've just been putting up with it because I thought I had to. I didn't realise there were therapists that could help...I just hope it's not too late for my arm
(Really loving the supportive environment in here....xoxo
Lisa
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1970.. SO GLAD you are getting to a therapist.... THIS WILL HELP YOU SO SO MUCH.. WAHOOOO! For you!
Keep moving sisters....
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Lisa, here's the Lymphoedema Association of Australia, if you're not already in touch with them:
Hoping you can get your medical team off dead center on this and start getting some care and relief. Australia is actually something of a lymphedema powerhouse -- lots of therapists and reseachers there. Hope you can connect to great resources!
Be well,
Binney0 -
Thanks Binney and Estepp. I just rang a therapist and she said that they can't do anything while I have cancer in the area. She suggested that I have the hospital put me in contact with a physio so I can actually move my arm...ah that would be nice! I just wanted to burst into tears on the phone when she said she couldn't help me
( I think I'll have a nana nap lol that will make me feel better...0 -
Lisa, try another therapist, or ask for a clearer explanation. The standard for lymphatic massage in the presence of active cancer has only two limiting factors:
It can't be done directly over the tumor.
It can only be done if the cancer is being treated.
Unless your doctor has identified active cancer extensively in your arm the standard of care would be to treat the arm, so not sure why she said what she did. Take a nap, have a couple brownies, and when you feel strong enough, carry on!
Keep us posted,
Binney0 -
I was recently dx'd with a new primary (thyroid papillary cancer). My LE/PT has me in a holding pattern until I after I have surgery to remove the cancer. I am meeting with the surgeon on the 15th for a consult, on the same day I am getting fitted for my optimal LE pump (Full Jacket - yea baby!). I am so excited and was really looking forward for the added help with my truncal LE. Big question...can I use the pump before surgery or do I need to pull up my big girl panties and try to be patient???
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Thanks Binney-brownies are my favorite food ever! Luckily for my waistline they are not that easy to come by in this country (they think brownies are chocolate cakes with frosting on them! thankfully I can buy Betty Crocker in the shops...now that is giving me an idea..) Anyway back to the point-I will speak to my doc and actually make sure he listens to me this time...
Nap time-and maybe a little Days of our Lives (so nice to work from home!)
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((((Laura))))), Binney is so right. Don't lower your standards; just change them. I know you are are beautiful. I can see you on these boards!!!!
LMC, I had to write a letter to my onco. right off the bat after I got diagnosed with LE. The spirit (I felt) coming from him and his office was basically that LE was not going to kill me, and they couldn't cure it, so there wasn't much point in helping me with it. I told him in my letter that it had changed my life forever, that I was now dealing with a serious, progressive, medical condition, and that I expected him to help me with it and was seriously disappointed in how he had not helped thus far. I tried to be very professional in the letter, but I didn't pull any punches. I was very straight forward.
It made a big difference. He called me and we talked - now, when I call for whatever, he and his staff are awesome - they really help me. You might want to consider doing something like that.
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Suzy, good for you for making your Dr. aware of your feelings. My oncs. basically dismiss LE like it's something just as you said, it's not apt to kill me. Their demenour when I mention LE almost makes me embarrassed and apologetic for even having brought it up. People's reactions to LE make me feel ashamed for having it.
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Oncs are such an odd breed. They deal in numbers. If it isn't cancer, they aren't interested. that is what my onc told me! He also told me, and my first LE therapist told me that if the cancer is still there or if you are being treated for the cancer still, they won't do massage, because it can spread the cancer. From what I understand, this is an old theory and not true. But many professionals who have been around a long time still hold to it.
If you cannot get a professional to help you while you are in treatment, at least do the LeBed exercises. These do help keep the lymphatic fluid moving. I would also use compression. You can get garments from Aimes Walker without an Rx. I don't think they have trunk garments tho. But you can find those on the Step Up site. At least when I was on chemo, my onc did suggest compression garments. But no massage.
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Lisa, I hope you find a therapist that can help you soon! Your arm sounds painful. So much to deal with all at once - plain lousy.
Binney, I love your comment about new standards. You know, after going through reconstruction and thinking I had made the most out of a crappy situation, it really sucks to now have to deal with LE. I thought I had made lemonade out of lemons but didn't realize another bag would be dumped in my cart! Now I don't have much sugar, and I certainly don't have the strength to stir a barrel-sized container!!
Suzy, you definitely don't sound like a goober. I had to adjust my standards so I could dress and feel good about myself, too. Wearing a compression tank with foam inserts on the sides 24/7 for 7 months was a real test of patience - just love the linebacker look! I guess recon was supposed to save me from the devastation of having to feel "ruined" or unattractive physically because I lost my breasts. It was a get-out-of-jail-free ticket and I could feel like I was made somewhat whole again. But LE, that just brought me back to feeling totally out of control and unattractive and "ruined". I'm grateful I'm healthy, but LE has made it hard to cope and come to terms with an additional New Standard. Yet I have to if I want to move on and recapture the joy in life. It really is an ongoing lesson on learning that I am not just what I look like on the outside - to myself or to others. I may be out of the linebacker attire, but I still have to dress to compensate for no bra and problem implants. I do my best. I still have meltdowns at times but then pick myself up and carry on. Sometimes I think if I were rid of the capsular contracture pain that it would be easier to accept my appearance. You know, I hate to even gripe about my situation when I know other women are having a much tougher time than I am.
Firni, thanks for reminding me about the LeBed exercises. I really need to check out the videos. It's another resource I should have in my arsenal.
Interesting talking about oncs, because I have my annual onc exam next Friday. The two times he's examined me since I developed LE, he's set off somewhat of a flare. I know he needs to feel around for anything suspicious, but I've planned to talk with him about it. I normally might be a little more relaxed, but since I created a little bit of a flare exercising a few days ago, and I will be flying a week after my exam, I'd really like to limit the amount of flaring he causes. The flare from exercising is pretty much down, but I always worry about traveling. A Florida trip usually = Flare. Not as bad since I now fly and figured out the salt trigger, but the humidity always gets me to some extent even in the cooler months.
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Thanks for the advice ladies-I just spoke to my GP and he was like "compression garments are pretty much the only thing you can do". No mention of where I could get them from though! I will try a bit harder with my onc on Tuesday. I truly don't understand why they don't get how painful and life changing LE is! I have a huge lump above my breast and I can't lift my arm up-surely they can see what that might do to a person's body?
Frustrating beyond measure..
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1970, it IS frustrating beyond measure.. That would be another great Thread Title in the LE Forums....LOL
I like it! HATE that you are not getting much HELP with all this... but like your attitude!
I think having a bit of " tude" keeps me sane.
Hey Binney...... I have been wrapping every night to sleep in it. I am trying. I am also doing the MLD that is taught on your site...and wearing my compression garments most of the days. So, i am trying not to hide behind a bush. I really do want to get better.
Also....... you all seem to get " fitted" for all your garments. I had my LE PT and the trained fitters at my Breast Center... al tell me... I am small. That there is no reason to fit me. They just put a medium on me... ( all three of these ladies , at different times)... and the medium was so big... they all told me.. I need a small... period. Any advice on this? Just wondering!
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PS
I read all the beautiful things you all wrote on not lowering my standards on how I look now. They were all very nice!! Thank you!
You all said to change the way I dress... to accommodate the LE. Dressing different can still be quite beautiful. You all said this in such GREAT ways!
For me though.... to dress, in a manner to cover the arm... and loose enough tops.. so that compression garments cannot be seen.... or made to be uncomfortable... is JUST NOT ME
For me only..... I personally feel .... when I dress that way... ( no matter HOW great the outfit is) like a big old soccer mom...LOL....... I feel like I should be driving the mini van that screams............. " I have stretch marks" ROFLOL.....
Humor me ladies..... this is just how I am.......
I can laugh at myself and make fun or myself pretty easy......
Oh, and in reality.. I WAS the soccer mom. I even coached.....bahhhhhhhhhhhhhhh But I coached in some really great running suits....
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ok.. last one....
As far as the goober of the pack........... I bet I can win that title hands down!
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I just received my compression bra in the mail today-I feel like the luckiest girl in the world! Oh how I long for the days when receiving LE products in the mail isn't the high point of my life!
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Hi, Laura:
I do not attempt to hide my LE arm or my compression garments...I live in Mississippi where the summers are unbearably hot. I wear sleeveless tops and my garments (and kinesio tape) are there for all to see! Of course they are patterned in wild colors and the kinesio tape is hot pink, so it's an interesting look.
LMC, I know exactly what you're talking about. I'm going today to get measured for a night sleeve and am so excited...how sad is that?????
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Just a few random thoughts. First, with respect to treatment during cancer. I am a freak who has breast tissue in my axilla & arm, and that is where my BC was. I had a bad mammogram/us in September (birad 4) right smack in the middle of where my BC was (please please let the past tense be true). The radiologist freaked out, but surgeon & radiation onc think it is a false positive, and so it wasn't biopsied. My LTx said exactly what Binney said ...no massage at the site of active or presumed cancer, but otherwise MLD is ok. Now, about appearance. I have never been a fashionista (chapstick counts as makeup). Though the surgeon & rad. onc did a number on my BC arm, my breast was untouched and when I wear a bra, my chest looks normal. But when I wear a bra, my arm starts aching. Having to make the choice of looking fabulous and being comfortable, pisses me off! LE and brachial plexus neuropathy meant I couldn't wear most of my old tops and dresses, and my old pants & skirts literally were falling off because I had lost weight. For 8 months, I wore the same 2 sweaters, 3 vests, and 4 short-sleeve shirts and baggy pants. I finally broke down, gave away most of my old clothes and bought some new clothes. No, lots of new clothes - 15 no-sleeve and short sleeve tee shirts, 6 sweaters, 4 jackets, 4 dresses, 5 pairs of pants, 5 skirts. (Thank goodness for Target, TJ Maxx and Talbot's outlet stores!) Ironically, my need to avoid long-sleeves and the fact that teen clothing now fits me better than women's clothing means that my new clothing is "sexier" than my old stuff. My husband says I look better than ever (bless him). Now, if I could only find a bra that works or a camisole that didn't squish me into nothing. Oh one last thing about fashion -- my teenaged daughter was recently given a leopard-print sleeve as a Bat Mitzvah give away present. She said that wearing colored and funky patterned sleeves is the rage among her peers. Who would have guessed that we LE-ers would be the height of fashion! KS1
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Laura, brava!
Hang in there!Hugs!
Binney0 -
I love those brightly colored and boldly patterned LE sleeves and gauntlets! I would definitely think sleeveless would be more comfortable.
For my truncal LE, my "uniform" is a sleeveless cami top that has ruffles or some kind of detailing or patterned fabric that visually detracts from my flat and uneven implants. Some are loose enough to allow for compression+inserts when necessary. In cool weather, I add a cardigan. I've basically adapted my wardrobe for layering, so I can simply remove a layer or two if I have a hot flash or find myself overheated.
For fall, I love fleece vests. Can wear over anything. For colder weather I bought two puffer vests. I also have a couple of long-sleeve fleece jackets and wear one under a vest when it's chillier. I would think for arm LE, these puffers would be great. They are pretty popular right now and come in a variety of styles. I don't think they look "soccer mom" at all. They are a far cry from some of the bulkier down vests of years ago. Would look great with the colorful or patterned sleeves.
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I am so tired of pulling this ____ sleeve up. 56 more days before the Oncologist will let me try something with silicone in it. The bad thing is I don't know it has slipped down to far until it starts throbbing from the nice tight roll it has made. ugg
I am up to 3-4 hours with my night sleeve before it come off. Why don't these fitters ask more questions like...can you stand anything on your fingers. NO They have neuropathy in the tips. My hands get hot they start throbbing. I looked on the site. They make a night sleeve that goes to the wrist and a glove. angry face still.
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Abby, will you onc let you use a liquid adhesive like It-Stays to keep your sleeve up? All that rolling and binding can't be good!
Binney0 -
Kitty, is your nightlseeve too tight? That sounds horrid!!!! I don't blame you for being frustrated.
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I haven't asked about the spray. I am acutal scared to try anything new now. I do have an allergy to surgical tape. So far the glue they used on the top of my wholes has been okay. lol Even my surgeon was scared to try anything new after having the allergic reaction before surgery to the Cipro.
My nightsleeve is not to tight. Just can't stand my fingers closed up and especially the thumb. Even when the PT wrap my hand she made sure not to get too close to the base of the fingers and to stay away from the thumb as much as possible. The neuropathy goes all the way down the thumb and back around part of the palm of the hand. I don't understand why heat makes mine worse. I am told most complain about cold making them hurt. Heck I haven't done anything normal when it's come to this cancer journey. lol At least I can laugh. It too will get better.
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