GRRRRRRRRR I HATE LE..........
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O.K I have the wknd to get my sh@t together hahaha, maybee the swelling will go down and yada yada yada. I appreciate your imput girl thanx. I also have 30 treatments. least the techs are very nice. I will check into the truncal with the surgeon also thanx again!0
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ro-berta~most importantly you are trying to throw all you can at b.c. However, Surgeons, R.O. etc. are very slow on the uptake to recognize lymphedema (or at least admit that's what you may have). Could you possibly be referred to a massage therapist who specializes in lymphedema from b.c. treatment? At least you could get an assessment and tips on how to handle the rest of your rads.
Edit to add~I see you are from Ontario, me too. If you are in the Ottawa area I might be able to help you find a MT.
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GmaF---gosh that seems like a lot on your plate.Everytime I read (and I do read) I see you in trouble.Just know you are in my thoughts and prayers.This thread is a lifesaver.
I am waiting for Aug.16th to see PT #3.ha.It really is becoming a joke...The truth of the matter is this is a real special profession and everyone thinks they know what they are doing.Just cannot wait to hear what they say.
Altho I know i have truncal LE.I am treating it like I did before.Im sleeping with the after surgery(harness) and during the day im wearing a champion sports bra.Im not changing anything till I see what they tell me.I do think I need a vest.not sure so I will just wait.
anyone have any input?
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Hi thanx once again you guys, I am going to phone the BS tuesday morning I have mentioned the swelling that I have about 10 days ago, so I will let her know I still have it and maybee she can refer me to someone. That,s my game plan I think I gave it long enough time ( my second lump was july3) meanwhile I will educate myself as much as possible and see what i could start doing.
Marple- I am quite aways away from you i live in a small town near London, mind you right now Ottawa doesn,t seem so far away!
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OK, so my BS diagnosed my truncal lymphodemia. I ended up having a biopsy a few months later and mentioned it to that surgeon and she said, yes, I can see it on the mamogram! Trust me, when it is pointed out to you it is easy to see on the screen.
I was referred for PT and did it for a time, learned how to treat myself, mine is not serious so it has been fine but the nipple has never really appeared again!
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Ro-berta - I wouldn't ask your BS to refer you... I would TELL her you need a referal to a LE Therapist for an evaluation... After a year of asking, I finally told them and they did it and I do have truncal lymphedema only in the breast...
Update: ladies I am having the nodule/lump removed on Weds at 12:30 pacific... the nodule is 4.3 x 3.9 cm and he think it will be a quick removal, but I told him if there is anything in there suspiscious please take it OUT!!! Need alot of hand holding and prayers...
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Just found my new pink alert bracelet for my surgery - lost it... But I am thinking, I kinda like Binney's idea better - getting a piece of stockette and write all over it in big letters: DO NOT USE THIS ARM, or NO BP, NO IV THIS ARM.. What do the rest of you think. Little bright pink braclet or big letters on a stockette???0
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I say get the ol' Sharpie out and make the big, black letters. Medical personnel sometimes ignore medical id tags.
Good luck to you GmaFoley.
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Thanx GmaFoley, I will tell her I just wasn,t sure if you could get it in one boob, Also forget the little pink braclet I would do the BIG letters on the sockette least that would get their attention! Consider your hand being held and lots of prayers from me also on wed. girl
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I have old sleeves that I wrote 'NO IV or BP' on...wore them for my last two surgeries with no argument
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I, was in Community Medical Center in Toms River, N.J. last May for surgery and they put a BRIGHT PINK NEON Bracelet on my LE arm.....that was the only hospital that I have seen attention brought to the LE arm....Liz
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Ok, it looks like I will opt for both LOL - lets see what that does... Your responses really made me laugh and cry all at the same time... Thanks!
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Liz, three cheers for the Medical Center!
You can get your own neon-pink bracelet free from The Reid Sleeve People, here:Click on "Free LE Alertband" on the left-hand side of the page. You can order them for yourself (be sure to get two if you've had bilateral surgeries), or order a dozen or two for your local bc or LE support group. I keep one in the glove compartment, one with my wrapping supplies (so I can grab the whole shebang in case of an emergency), and one with my insurance card in my wallet.
Not only are they free, but the Reid Sleeve employees volunteer to fill the orders and mail them out on their own time--an amazing service! It's always a boost to remember how many good people there are out there who really care about us lymphers.
Be well!
Binney0 -
My opinion - forget the sock, write it DIRECTLY ON YOUR ARM. You don't want someone removing it because it's not sterile. Marker ink will come off with alcohol later.
Best of luck with the surgery. Here's to B9 results!
Leah
Edited for typos. Again.
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hmm that would be hard it is my primary arm.... Don't think they would understand DH's handwriting
Edit: thanks for making me laugh again.. I know its not funny but I can imagine my hubby writing that on my arm and not understanding why I told him to do that.
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One of the ladies here a while back wrote directly on her arm "No BP, No IV, Restricted Extremity".
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Hey ladies............dropping by to say "Hi", and to say, nothing has changed..................new therapist..............same bullshit..................it is costing me a fortune............$320.00 a month, and they are doing nothing any different then the other therapist did....................I am fed up, am giving up, and will learn to live with what I have.........................and these people are all "specialists".............God help the ones that aren't..............I'm in the "gap" with my meds which means I'm paying more then the insurance company; is now..............and paying co-pays for something that is showing no result................they are repeating what I already knew from a whole year of LE bullshit........................I've had it............I give up.............it is not worth the depression going, paying, and getting no result causes.......................and I'm not a quitter.............but this has got me down....................hugs.
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I...Truly, believe with this we are on our OWN.......I did go to a LE last summer and it seemed more Hokus Pokus to me.....it is all trial and Error for us and them......I have been on my own since last August....and I will continue to do so......yes....it can be depressing....but we did not quit...just took a step back and moved on......Liz
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Oh boy - Ducky and Liz - that kinda gets me down, but I must tell you I have and OT that just got his certification last November... yes, I decided to be a guinea pig and try him out... he has been an OT for 20 years... My breast is almost back to normal and he worked with me on the trial and error... he has been an encouragement to me.. The error was that my good side had an axillary node that didn't want the extra load - so we split the load and went down to my inguinals ... it works - kinda interesting how you can split your body in half and make it work... I had to pay $300/visit but for me my LET was worth it.. I am going to see him one more time, tomorrow, before surgery on weds. Hoping I don't have any ill effects.
Love you Ducky and Liz and I will be here for you even though I'm just a newbie...
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GmaFoley, I drain each side down to the inguinals, too. I have had slight swelling on my "good" side even though I didn't have a sentinel node biopsy there. After switching to draining each side separately, I rarely have swelling on the good side. I think I have scarring from when I had implant reconstruction. Even though that's been undone and I've had myofascial work on my scars, I still drain each side separately. It works well and I seem to be able to do it more effectively that way, so I stick with it.
Ducky, we are near each other, and I would gladly share/compare notes. Doesn't seem right you can't get good treatment and properly fitting garments.0 -
Panic mode again... sorry -
Went to church this morning, found out one of my friends is dying from serosis of the liver from his meds.... had a heart attack a few years back so he can't have a transplant...
Went home and I made my own compression binder for my chest.. cost me $8 for the material LOL - put baby snaps on it instead of that monster velcro - I think I like it.. Figured it would be a good change after the bandaging comes off. Our hospital doesn't give you one of those expand-a-band binders.. I looked at one of them and figured out what I needed to make it.
Now going to finish sewing my to peasant blouses and as I'm sewing I realize I need button up blouses for this week LOL... Its ok I like these anyway and can use it when I feel better.
I have those butterflies in the stomach right now... ok ... just breathe... you will do fine.... that is what I tell everyone else.... correct??? I really thought if I kept busy - it wouldn't be in my head....
*******GROUP HUG********
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Hey ladies to top off my day I re-read my US report. The radiologist messed up how big my scar tissue was and how big the lump is - "Thickened skin measuring 3.7 X 2.2 x 2.9 mm" and my nodule "measures 4.2 x 3.9 cm" Hmmm my thickened skin scar is way bigger than my lump/nodule... Should I bring this to the surgeons attention???
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Teka - nope that would make the scar tissue smaller than the lump and that isn't correct.
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Did anyone feel incredibly emotional about the guy in the Olympics running with no feet. I wanted so badly for him to win. I felt some strange kinship. I have a limb ruling my life.
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Don't have TV but heard about him on the radio. My son runs a adult flag football team and his quarterback was paralized from the waste down and told he would never walk again... He is a quarterback, standing and running on his feet! - The QB told me every step he has phantom nerve pains, but wants to beat it... and he does - awesome and acurrate Amazing.
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Here's my LE/CA GRRR for the day. I used to pride myself in my ability to travel light, easily sticking all I needed for a weekend in my laptop bag, and never ever checking luggage. I just assembled my meds, wrapping materials, day garments (arm, body, legs), swell spots, extra Tribute, and various other LE accessories (kinesiotape, donning gloves, garment bags), and try as I might, I can't get them to fit in a carryon-sized bag. One of my meds (lovenox) takes up 1/3 of the suitcase, but I can't check it because it has a narrow temp range. So I guess I will have to check some of the LE stuff and pray the airline doesn't lose my bag.
I know that wheelchairs/crutches/walkers etc. don't count as carryon items. I wonder if the same is true for medical supplies ...
KS1
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KS1 - I almost feel like I need a diaper bag everytime I go out now for all my stuff.. except I call it my BC bag.
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Oh GREAT - Now surgeon calls me back and decides he wants to have a Mammogram before the surgery - today or tomorrow.. The last one was in January..
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GmaFoley, what a pain!
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KS1 - Yes it will be a PAIN - it is a longer more view diagnostic mammo and I have painful breast LE..
I talked to surgeons assistant and this happened because I mentioned I wanted to make sure he had my permission to take out ANYTHING that looked suspiscious... When he got my note, that is when he decided to do this... Guess it was my own darn fault.... but I would rather him take everything than miss something.... correct? or am I just crazy!!!
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