GRRRRRRRRR I HATE LE..........
Comments
-
Sheryl--
I support all individual opinions and feelings about telling others about their LE or BC, but
I'm like you in that I tell people so they are educated about it.
For example, a few months ago I went to PT-CLT appt and she wrapped my arm. I next went to take my DD to allergist office and after seeing doctor we were standing by nurse station and reception staff area when doc walked by and said good to see you again, take care, and shook my right hand which is the one wrapped.
He looked concerned and said "what happened to your arm?"
I replied "Lymphedema--breast cancer's dirty little secret."
He said "I'm so sorry to hear that--thats true that most dont know the consequences of losing lymph nodes. "
He left and then a nurse asked me more about it and I was happy to tell her.
I just had LNT-Lymph Node Transfer surgery two weeks ago and even though not swelling (hope that its forever out of my life), my surgeon wanted my arm wrapped or with day and night sleeves on for several weeks after.
So I had to chuckle at Christmas Eve service when an elderly greeter at the door shook my hand and wished me Merry Christmas and saw and felt my LE glove and said "Oh my, I hope I didnt hurt your broken hand!" 😊
I am in the process of job interviews, but for damn sure I will not be wearing a sleeve and glove as I shake hands with people on interview panels. Job market is bad news as it is and dont want to be discriminated against for my shit luck of getting BC and LE.0 -
"Dassi52
I really admire you when people ask questions and you reply "why"?That's me Sheryl - purple32.
No need to admire .. .we are all dffernet. I want to tell select people in a time and place of my own choosing.
If it is to educate or help ppl ( as I said , if people gave me an answer as to why that showed concern of LE, I would be telling a long story) that would be different; I just dont care to tittilate anyone at my expense.
In this, as in all things, we are each and every one of us, is different. If some ppl find it cathartic to tell, then by all means- shout from the rooftops!
My rsply was directly in support of hugz and others who may feel vain (as I did ) and I dont think any of us need to <be made to> feel worse about our LE.To each his own.
Cheers!
0 -
I just had LNT-Lymph Node Transfer surgery two weeks ago and even though not swelling (hope that its forever out of my life), my surgeon wanted my arm wrapped or with day and night sleeves on for several weeks after.
PinkHeart
Will you pls share your story about that here ?Best wishes for perfect results!
0 -
Whoops sorry purple32. Sorry for the confusion.
sheryl0 -
Ladies, didn't want you to worry - just going to take a break this week... I'm feeling I'm addicted to this site - maybe because I know you all care about what goes on - but I find myself on here, lurking most of my breaks at work and the rest of the afternoon.. I just need a few days away from here - so tomorrow through next monday I won't be around... Let anyone else know that is looking for me please...
0 -
gma, it's healthy to take a break from all this from time to time! It's so easy to let LE and all our experiences that bring us here, consume our hearts, minds, and time. The support here is wonderful and sometimes literally a lifesaver for those who get cellulitis and don't realize it until someone explains it in one of these forums. Still, sometimes we just need to take a deep LE breath and stay away for a while. You are sure not the first one to take a break!
On the topic of whether we like to explain or not when others ask about our compressed arms, my own view is that had I any clue whatsoever of the true risk and implication of LE after surgery, I darn well would have asked more questions and taken some precautions that I was unaware of. Might not have prevented LE, but who knows? So, when asked about my arm, I will always say "it's because I have lymphedema, which is swelling caused by damage to my lymphatic system, caused by breast cancer treatment. If you know anyone who had or ever gets breast cancer, please tell them to research lymphedema, to learn about the risks and some precautions they can take, because there's no cure. And if you want me to tell you more now, I sure can!"
I've had just a few takers on telling more, including one woman next to me in an airplane who had LE and even had a sleeve and glove with her (but in her briefcase, not on her arm!), but she had been given no treatment (!!!!!) and when I asked her if she had ever had cellulitis, she asked, 'what's cellulitis?' (!!!!!) And her hand and arm were visibly swollen. She told me that she'd been measured once, told to wear the sleeve and glove if she wanted to, but that basically it was never going to get better, so she should decide if it was worth it to her to wear the sleeve. (!!!!!!!!!!) Needless to say, I talked the woman's ears off, but she really wanted to learn. We exchanged email addresses and once home, I loaded her up with links to here, the SU-SO site, NLN, and some studies.
That one 'sharing' experience was worth it to me to be so public about my LE. Of course, most of the time I wear my sleeve only for stress activity, which most often means in the gym, where they're all used to seeing it, and in airplanes, where I'm surrounded by complete strangers, so no one that I know will learn about my medical history from those conversations. When not traveling to teach seminars, I work in my home, so there are no colleagues around who might wonder about my arm. Any being self-employed, I of course don't have to worry about anyone thinking I might be too costly of an employee because of health issues. That's a sad, unfair, but legitimate worry, and if I were PinkHeart, I would ditch the compression gear during interviews, too!
I'm not suggesting that the tell-all approach is what everyone else should do, just that for me, it's not at all troubling to talk about it, and so I do.
Carol
0 -
I'm a let it all hang out girl myself. I want sleeve covers or pretty garments, not to hide the fact that I have LE but because most sleeves etc., are just so doggone ugly.
I've worked, my entire career in education. The last 25 years in an academic library surrounded by scientists and engineers. I spend my days explaining things to people who are a whole lot smarter than me. Smarter, but young and often socially ackward. (Anybody watch "The Big Bang Theory?" These are the people I work with) and If I can get even one of these kids excited about working with technologies that will deal with LE I like Carol am willing, even eager to spill my guts. But I don't have to look dowdy while doing so.
I understand that others don't feel like putting it all out there and that's fine, we all get through the days the best way we can.
0 -
Cindy, I understand, I remember when I got my diagnosis, I told everyone I had BC but to be honest, 5 women, went for their long over do mamos~ None had any problems but I do believe it helps to show that one can keep moving and working while in treatment
course, I did end up with a few of those Dumbo comments but now, I laugh at those folks
0 -
I thought I would go for a week and then..... just found out it is time for a mammogram... it has only been 3 months post surgery plus the residual breast LE... I'm not looking forward to it .. Just reallized it has been a year since my good one has been checked
.. Lots of pain killers before I guess - I was dying for the diagnostic one in august... And lots of water???? do I do extra MLD the night before?0 -
I am pretty open with any questions asked about my sleeve and the reasons behind it. Maybe my medical background makes me more comfortable with my diagnosis and treatment, maybe I just don't care what people think, maybe I just don't mind sharing, maybe I'm becoming more like my mother and will talk to anyone
. Whatever the reason - if I'm asked, I answer. Depending on the situation the explanation varies in length. I would have enjoed the captive audience on the airplane.I work out of my home office and the customer sites I visit are all radiology departments in hospitals or imaging centers. Most everyone in those environments see my sleeve and know the reason and the history. It does open up interesting dialog as one of my responsiblities is mammography workflow.
My first visit to a customer site (after treatment) was kinda funny. I walked into a hospital radiology department with my sleeve on and my hair was barely growing back (I never did wear a wig). Not a soul asked a question - I was a dead giveaway for breast cancer patient. I never had to explain a thing.
Guess I'm in the right line of work for BC and LE.
BTW - saw my RO today. He was pleased with LE arm and all else. Got a one year pass until next visit.
0 -
ohio, congrats on the one year pass! I got one as well last week, it was such a relief to not be asked for a biopsy or anything
0 -
Ohio - congrats on the one year before recheck!!! That is wonderful.
I am open, also to questions about LE - I usually am pretty up front and say about what Carol says, "it's because I have lymphedema, which is swelling caused by damage to my lymphatic system, caused by breast cancer treatment", but the one thing I do have trouble with is when they say, "Oh my God, I'm so sorry" and then RUN away... When they say, "Oh Wow how does that happen" and really want to know, I explain further.
0 -
Forgot to mention that i've even had a few people say I'm sorry you have leukemia, after I told them I had lymphedema! Guess I need to enunciate: lym-phe-de-ma. 😊
0 -
I've decided there's another thing I hate about LE - when you gain a few pounds, it's hard to tell whether it's LE weight or real weight gain. I used to weigh 60 pounds more than I do now, so I am extremely vigilant about not letting weight creep up. I am religious about weighing myself daily. If I gain a couple of pounds I know I need to take action right away so that a 3-4 pound weight gain doesn't turn into 10 or 15 pounds. I've learned over the years to immediately ramp up the exercise and get very strict about my diet until I reverse the weight gain.
But now with LE, I can have a weight gain of 3-4 pounds, but some or all of that might be truncal LE rather than fat. If it's LE, then going to all the trouble and deprivation of ramping up the diet/exercise is a wasted effort. And if it's fat, then talking all the time and effort to ramping up LE care is a wasted effort. I know I could ramp up both, but basic maintenance for weight and for LE takes up enough time without adding in a lot of effort and time that might be for naught.
Sometimes it's pretty clear what the weight gain is from, so I know whether to ramp up LE maintenance or weight maintenance, but other times it's not clear which one it is. GRRRRRRRRRRRRRRRRRRRRRRR!
0 -
Mary, what a spot-on post! I weighed myself this morning after a few days away, thinking that all the walking I did, much of it in true cardio mode, would have at least kept me even on my weight--DH and I did eat more than normal, and richer foods. But bah!! Three pounds!! So I'm wondering if it's LE, because I sure did notice that the large amount of walking was bugging my truncal area. This is so incredibly frustrating (weight control and LE control)!
0 -
Ohio, Way to go, It sounds like we are playing Monopoly and we get to Pass GO until next year!
Nats, Isn't that so unfair, we try and keep our bodies decent looking with all that exercise and then LE assaults us with the "puffy down jacket" look! Double grrrrrrrrrrrrrrrr
Carol, With all that walking I am thinking you gained muscle but then I see your trunk is bugging you, Oh my this is so daunting! Did you try and keep your arms up 90 degree angle and pump fists over head to help trunk when walking?p>0 -
Gma Foley, I think it would be a good idea to call your LE PT and ask what to do before & after your mammo. I know you have truncal so you'll need to know what to do.
If I'm asked about my arm by someone who knows I have BC I tell them I have LE and that it's a fairly common SE of BC surgery. If they don't know and I don't want to tell them I say I have a condition of chronic swelling. If it's a complete stranger I don't tell them anything - I don't owe rude people an answer.
The funniest comment I ever got was a few years ago when I was wrapped during the intense early phase of LE tx. I was at a party in honor of a newly married couple when one of the young women there asked (not rudely, she was showing concern for what she thought was an injury). So I just said it was a condition called LE which was chronic swelling and this was part of the tx. One of the young women said, "Oh, I know someone who has that. Did you know you can get sleeves and gloves for it? It would probably be much more comfortable." She was so earnest and thought she was helping me by giving me this information! I just said that I would be wearing the garments after more tx when it was under control. I was reminded of what Mark Twain said in A Conneticut Yankee In King Arthur's Court, "My bones ached for three days from the effort of not laughing".
Leah
0 -
No prob, sheryl.
Thanks for giving us a heads up, gma !
You have my email if you should need to write.Have a good break!
0 -
Carol
I've lost 20 lbs since OCT ...weight watchers!
I have been doing some exercise daily, but it pales in comparison to yours.0 -
Hi
I posted a few days ago, before I started chemo. Just wanted to say I'm doing well and I'm going back to physical therapy tomorrow, my arm is still swollen but like you all said, it's to soon to tell. Thanks for your support, you were all great here. One day at a time...Happy New Year!
0 -
Happy New Year to you as well, sophiafred--and good luck with the PT. Keep us posted on how you do, and what happens with your swelling!
0 -
well a new year full of new deductibles...horray!!--NOT! Just ordered myself some new sleeves to start the new yr off right. No custom glove right now as my insurance makes it impossible to get them paid for so off the rack it is for me. left arm/hand is so pitiful again. Makes me so sad. Tired of everything right now. For once I would like something to fall in the right direction and aviod complications!! 2013 may just be my year!
Maggie
0 -
It can be soooo frustrating huh , mags ? I know. I am fairly new to all of this, but trust me, I have been dealing with INS CO and health challenges for about 13 yrs now. There are times you really just want to throw your hands up in the air and give up.
But every now and then something good happens !
OR, I get up the gumption to think " Screw them... I refuse to switch INS CO. They'll be sorry ! "
When those things don''t help, I come here for support .... here's some for you -
(((HUGS!)))
0 -
Mags--
I hope things go better for you this new year with both your flap re-do and LE. You've had a very rough journey. Have you talked about LNT-lymph node transfer surgery with your PS Dr Massey. She performs that surgery and advocate for LE education and awareness. Maybe down the road as first you need optimal healing to gear up for your next recon surgery.
Got a chuckle out of your new year-new deductible comment.. Take care. 0 -
LE RISK w/ Lymph Node Cancer ?
Hi Ladies
Wasnt sure WHERE on earth to put this so forgive me if it is not in the appropriate place. I believe THIS is where we were recently talking about sharing ( or not sharing) our LE info w/ strangers and others so here I am .
My husband has a ' workfriend' recently dx with cancer of a lymph node in the groin. He had surgery. Is he at high risk for LE, generally speaking? Does anyone know ?This is an instance where I would be more than happy to ' expose myself' and point him to the SUSO and NLN sites etc ... He may not be ready for this kind of info. I just want to know if he is high risk and if his DRS warned him of precautions. I will swear until the bitter end I did not get so much as a brochure at MGH. I cannot sit idly by if this is the case with someone else.
Resident experts ... Pls guide me .
THX
0 -
Purple, Yes - if lymph nodes were part of the surgery, his lymph system is compromised. His lower quadrants would be compromised.
0 -
Purple, any time lymph nodes are removed, the affected quadrant is at risk. People with lower limb risk are far less likely to be told of their risk than we bc gals are--even women with gyne cancers are rarely warned, and they have a much harder time getting a diagnosis than we do. (That's hard to believe, isn't it?
) Post-surgical swelling might be expected, just like with truncal swelling after bc surgery, but it may also be LE. So, yeah, you might want to keep it in mind and pick a good time to bring it up to him. May have to bring it up more than once over the coming months since it's so hard to hear anything when your mind is already zonked from dealing with the cancer diagnosis.Keep us posted! LymphedemaPeople.com is a good site for lower extremity LE, and there's a very active Men With LE yahoo discussion group, both led by Pat O'Connor.
Be well,
Binney0 -
YES purple - my LE-T explained that any time lymph nodes are messed with (removed, radiated, ..) we are at risk for LE. Treatment for lymphoma, protate cancer, many head and neck cancers involve treatment to the lymph system, these people are all at risk, they should be assessed by a LE-T, just like us!!! With the head and neck cancers it's harder to recognize, so should be assessed early on, so they know what and what not to do, what to watch for, etc....
0 -
So, yeah, you might want to keep it in mind and pick a good time to bring it up to him
UGH! I recall just dealing with the adrenal of the BIG C news first ... ok.Thanks very much for the resource. This person does need to be cautioned.
0 -
Happy New Year everybody. Hope we have a swell free year!
I rang in the new year sick. Thankfully it's not flu but the viral one that is going around with an infection. I still feel horrible. Here is my question..How long can you get by without doing MLD. I haven't done it since Sunday and haven't worn compression either. Swelling in legs is actually down but I am seeing some in my lower arm. May try to wear my night tribute on my arm tonight..just depends on the coughing. It's the cough from H e L L. Cough till you get sick.
0
