GRRRRRRRRR I HATE LE..........
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Maybe we should be glad that the producers did not 'pretty up' the real-life insensitivity of the surgeon?
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Double GRRRRR........the cancer is gone? They are assuming an awful lot with that statement.
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I just went back and watched that scene, and the surgeon goes on to say, "Look at the lymphedema as the price we're paying..."
And the patient sanely interrupts her with, "The price I'M paying!"
Now, that's my kinda lympher!
Unfortunately, the woman isn't wearing garments, her arms aren't wrapped -- nothing. Apparently none of her surgeons ever send her to a well-trained lymphedema therapist. <sigh!> Sadly, that's also too close to reality.
Binney0 -
I haven't watched it again but I do remember Dr Bailey saying 'be happy the cancer is gone.' and like all of you have said, I found it to be a very condescending statement from the doctor but very realistic. Dr Bailey wasn't even concerned about the patients quality of life just wanting her to be glad she was alive. and like Binney said, I was also wondering where the garment/wrapping was at. I guess we can't expect the 'little dark secret' of breast cancer to get top billing on a TV show but they could have looked into and showed more methods of treatment other than experimental surgery or at least showed the results of the surgery.
Sheila
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So I went to see a therapist as a preventative measure and I had a million questions... Her reply? "please write all your questions down for me, and I will find the answers for next time"... gee I don't feel to comfortable with her knowledge. Afraid she will do more harm than good!
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I've never seen Gray's Anatomy, but they should have medical consultants--snd likely they had to look up LE..., and unfortunately, this plot is to real for comfort---clueless surgeon, patient told to be grateful for collateral damage and lifelong disease, emphasis on the "cure--and how we need to be grateful, and inadequate treatment of LE.
Sounds like a reality show to me....
DM13--unfortunately the quality of LE therapists varies widely, but she is there to educate you and should have the answers ready when you ask. IMO. And I was just ranting today, to my amazing LE therapist about how the first PT I saw, made a mess of things and set me up for LE....A good LE therapist is a blessing and an inadequate one can do harm. Good instincts on your part.
Kira
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As long as the is the forum to whine... 2 slightly irritating things today...my principal hurt his knee playing basketball for fun and is in a knee brace until the swelling goes down and he's whining to me about the brace. I just said " ummm HELLO??" and showed him the sleeve, glove and bandaging OVER the glove & wrist that I wear daily.
Then the other teachers were giving me a hard time about not painting my "good" hand and making a handprint on a school banner. I asked one of them to make an extra for me. People have no idea what a pain it is to unwrap and undo everything to wash your hands properly and then put it all back together in the right places so it fits properly and works correctly.0 -
Gottalovened:
"people have no idea"---they sure don't!
Good for you to show the principal what you live with on a daily basis--if it only was a temporary knee strain...
I'm sure you'd love to just be able to dip your hand in paint without thinking about the repercussions.
Sounds like a very grrrrrrrrr day at work
Kira
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it just amazes me.. how people in, and out of "the industry" don't get it!!!3jays0
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Hey ladies! I haven't posted in a while but I need some advice..and quick! I just arrived in Mexico yesterday and will be here a week. And it's suuuuuuuuuuuuper hot! My arm is swelling a little due to the heat but will also go down when I'm in air conditioning. I'm wearing my sleeve pretty much all day. Here's the problem. It's a little harder to get my sleeve on and off due to the heat, and today I noticed that there is a rip in a portion of my glove. It's very small but it looks like it's starting to unravel. I'm going to be gone for 2 weeks and I don't know what to do! Is there some way I can stop it from ripping. I'll be in serious trouble if It unravels...
Would nail polish work? Thanks ladies! I appreciate any advice.
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MelanieAnn, nail polish would make that area stiff and no longer compressive, and it might even chafe. Don't know if you can get Fray-Chek in Mexico (sewing or crafts store?), but that's what I use. It comes in a small plastic bottle; you use the dipenser tip to dot it onto the garment just where it's needed.
My garments also come with an instruction sheet that says if you're careful you can darn a rip or frayed portion, but I've never tried it. Don't know how much experience you might have with needle and thread, but if you choose to darn don't make knots on the inside of the garments, and don't pull the stitches tight -- let them lie flat.
Aaaugh!
Let us know what you discover.And, hey! Have a great time!
Binney0 -
Thanks Binney! I have no idea about the fray-check..but I'll check on it. I'm a pretty good sewer..I'd just need to find a needle and some thread. Not sure why I didn't think of that. It's a very tiny area but I'm sure it could quickly come undone.
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HELP! My underarm has an open wound due to the rads. I don't want this to agravate my "mild" upper arm lyphedema. I would apreciate any advice you could give me. Thank you!
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Ralston, it's a common area to "desquamate" during rads. Silvadene cream is very helpful, and since it's hard not to have "skin on skin" in that area, when you're home, if you can lay with your arm out from your side.
I work in rad onc, and recently we had a patient who is being treated for LE mostly as prophylaxis, and she got that raw under her arm and was very concerned about her LE. She wore her garments, used her silvadene, and did well in the end.
It's difficult, as radiation irritates the heck out of the quadrant.
I'd show your rad onc, and get whatever topical treatment they recommend, and just take it as easy as you can--no heavy lifting on that side, lots of elevation of the arm, hydration and deep breathing and if you have a sleeve/glove, you can carefully wear it.
When is rads over?--I see you're a month in, normally you have another week or two.
For chest wall radiation, they typically use a "bolus" to increase the amount of rads you get to the skin area, and that's why people who get chest wall radiation tend to get more skin reactions.
I am not a rad onc, but I work for two of them.
Kira
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Thank you Kira! 5 more without bolus, but I think my upper arm is getting bigger and I am freaking out. I will talk to the nurse today.
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Fray-check vs. Fray-block.
There are two (competitive?) products that are not the same. Fray-check will stiffen what it is applied to, while Fray-block leaves the fabric it's applied to pliable. You might want to consider starting with Fray-block.
LisaAlissa
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Anybody done this stupid thing? I was putting on my sleeve without my donning glove yesterday, lost my grip on it, and punched myself in the face just below my eye. Thankfully not my nose.
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My dear friend died from breast cancer last week. I have been so sad. I know her quality of life had declined, and at least she is now free, but I am feeling rather lost. Hard to know you will never see someone again. She was a bright, thoughtful, kind and beautiful woman and will be missed by many.
On the flip side, another dear friend who was treated for BC last year and then developed LE, had a bout with cellulitis this weekend and is now on antibiotics.
Make it stop. Please, someone, make it all stop. What doesn't kill you does Not make you stronger.0 -
Tina, I am so sorry to hear about your friends. It all just makes you want to scream between the tears. You sure have every right to feel sad. We can all commiserate. --Carol
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{{{tina{}}}}}}}}}}}}}}}3jays0
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wanted to say: binney told me about fray block last year, the gloves still holding up!and yes,i think we've all punched ourselves donning the darn things.. my dh was helping me last week, and i got HIM too!!(was that subliminal, i wonder???) hahaha 3jays0
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I agree Tina. Sending gentle hugs and a fresh out of the oven batch of brownies.
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I've given myself a few good whacks over the years too. I always feel kind of embarrassed but the dogs don't seem to notice.
Let's hope this doesn't happen though.
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Oh Tina, I feel for you for the loss of your friend. I have been to two funerals in January for friends who have died of breast cancer. It was so hard watching them decline. I try to remember them as the vibrant women they once were. One had LE and always had on her sleeve. All of this is a bummer!!
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I saw my BS for a year out follow up yesterday. I was asked to update a check off sheet that has yes or no to a lot of conditions. It was two pages long. Guess what? Lymphedema was not on there. They had gout, acne, rosecea, etc. So I boldly added Lymphedema in caps at the end. So there.
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Good for you Becky, let them know that there is an important condition that they don't put on the form.
Sheila
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Becky, that's outrageous! I never thought about it before, but I'm pretty sure that LE has never shown on any health history I've ever been asked to complete. I'll be putting it in all caps forever after. Thanks for bringing this onto the LE radar screen!
Carol
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Thanks for the brownies and kind words. Becky, I cannot imagine two funerals in one month. It really is difficult watching someone decline. Yes, remembering them as the vital person they once were is helpful.
You guys make me laugh with these stories about clocking yourself or husband while donning a sleeve. I've already done it to myself once - in the airport bathroom.
Yes, I always include lymphedema on forms in bold letters.0 -
Saw a dr last fall about my hand. Didn't know what they would ask in the way of medical history, so I gave them my own typed up history and meds list that I keep up to date. Near the top, just below allergies, I put Special Considerations "lymphedema in upper left quadrant and arm and at risk for cellulitis". Had my sleeve on and I'll be darned if the medical assistant didn't reach for my sleeved arm to take a blood pressure reading. Next time, I'll use Becky's suggestion and put it on the top of their own check the box form.GRRRR!
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I'm so sorry that you ladies have to deal with this & sending you all positive thoughts & blessing for improvement. As far as people aking you personal questions, I have a lot of experience with that... We adopted my eight year old daughter from China when she was eleven months old. People were always asking us nosey questions. By the time she was two, it was getting too close to the point that she could understand the questions & comments. "How much did she cost? What happened to her REAL parents? Couldn't you have your OWN children? and so forth..." While we're very proud of our family, some of the details are obviously personal.
Anyway, my point is to share some possible responses to personal questions: (1) Why do you need to know? (this shuts them up every time) (2) That's a personal question (3) (said in a whisper...) I'm so sorry, but I guess I should tell you it's not really polite to ask people personal questions about their medical issues.
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