Understand hate LE

jennifer1

Many things not told to me about BC and the side effect of treatment.  First thing is that BC.org should be required reading.  Thyroid problem, broken rib, cellutitus, nuerophy and mostly LE.  The fear of return is alway present too.  My thyroid is reversing but the weight gain messed with my LE.  I have given 3 years to BC and enough is enough.  Cant have a mammo this year because of swelling but will get MRI which is ok.  I adapted two of those large swell spots for my breasts, looks like a weird bra and that really helps.  Dont need the sleeve but use the stretchy material they use under wrapping for sleeve when I need it.  Just light compression in arm.  Considered lymph surgery however dont like the sound of that.  Since I am 67 (almost) this works.  Life i simple but I do feel for all of you who have active lives and are young and dealing with this.  It will all get better and they will fix this.

Kicks

Not sure ar all what you are talking about with the "the stretchy material they use under wrapping for sleeve".  There is nothing that is wrapped under my sleeves at all.  Not my day garments or night sleeve.  (I do use an Isotoner Opera length glove under my night sleeve as my night sleeve is a gauntlet style and it helps with hand) and have 2 over sleeves for it and use as/if needed.  I have to have light compression as I'm very pressure sensitive so my custom garments as light compression (heavy makes it so BAD).  

My LE does not stop me froom doing anything I want to do and I am a VERY active outdoor woman as I have always been.  I'm not 'young' but there is no reason for anyone to "feel' for me.

I, too, am 66 - will be 67 net month on the anniversary of the Battle of the Greasy Grass (AKA Custer's Last 'Stand') and the start of the Korean 'War' for Korea.

Kicks

OOPS - Double post!  Sorry

Binney4

Jennifer, I hear ya'! There's nothing simple about the long-term side effects of bc treatment, that's for sure! Weight loss is a real battle, yes? But it sure does help with the LE control.

Not all of us are as fortunate as Kicks--I still struggle with some of the limitations the LE has placed on me. (Just tried crocheting again last week, my all-time favorite creative pasttime--and paid for it!)

One thing your post illustrates is that those of us with LE sure do have to get creative with managing it! Onward!
Binney

Anonymous

Jennifer, thanks for feeling for those of us who struggle with this. It's really nice to know that. One thing though, I would extend those feelings to anyone young or old who happens to be struggling. LE is a lifelong thing that we can never quite forget about though we want to. Try that and we end up with cellulitis or something. We do the best we can with what we've got.

Binney so sorry that LE has been an unwelcome guest in your crochet. HUGS. I hope you stop paying real soon!

Musical

kira66715

I would say that suffering is not a "zero sum game" where we need to compete and one person's suffering is more valid than another.

LE plain old sucks, that's my opinion, and I don't care if it's mild or severe, it's a condition we have to manage and it came with the treatment.

I hate having to factor it in, and for me, the limitations may be less than another person's, but it still impacts me.

Just read a book, "The Obituary Writer" by Ann Hood, who is a local writer, and as I know she lost a child the book had a focus on grief. I personally believe that LE involves grief as it changes us. The book wasn't wonderful, it was a book club thing, but I could relate to her comments.

Look, I'm facing abdominal surgery next week for iatrogenic endometrial cancer, and I NEED to work with the surgeon and OR and post op staff about how I'll manage my LE. It adds to the suckiness of the situation.

Luckily my surgeon understands. Many wouldn't.

purple32

Very lucky regarding your doctors , kira.  Not so lucky on the endo issue.  That really sucks!  You are in all of our thoughts.

This whole " iatrogenic thing" is very upsetting.  I so agree with the grief issues which come with any loss.  LE has made me lose many things .  Thankfully, it has not made me lose  many abilities/ has not diabled me (yet ?!)  but  it has impacted my life, as you out it so well.  Furthermore, it has made me lose confidence in many things and has limited my choices etc ...  Just passed up a job move due to LE and the limitations it would impose.

The whole things sucks ., and I think being iatrogenic truly adds to the grief- it makes one feel much like a victim in some ways, and when that happens, well, there's nothinbg good about it.  Besides the phyical aspect, it seems there are things we need to constantly battle emptionally.

Good Luck with your surgery.

I sure hope LE does not get in your way!

Anonymous

Love what you said about competition and the degree Kira. Exactly.

Also some days as individuals we'll be able to cope with it better than other days. The thing that gets up my nose is people who tell you to "be positive" when the going gets rough or as some "miracle antidote" so we're supposed to be always on top of the world. Oh how I hate that saying above every other as if we can change physical reality with our thoughts.....All it does is make the person feel worse and dump more UNEEDED responsiblity to perform. (Grrrrrrrrrrrrrrrrrrrrr )

Positive.... really???? about what?...yeah Im 100% sure I have LE ...100% sure Ive had BC....  What? like if we think hard enough, will we be able to get rid of our LE permanantly? HUH? People who tell you to "be positive" are uncomfortable in your presence and really don't want to hear about your "downtimes" because of either selfishness or the fear factor... it might cut too close to the bone and make them think too much about it for their own lives. Hence the copout phrase "be positive"..

Positive thinking SUCKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The real meaning of "positive" I grew up with was either in power phases OR being 100% sure about something. Now we have the "positive cult" shoved down our throats from everywhere daily. Theres a vast difference between looking at the bright side WITHIN the frame of reality,  than playing mind games.

Reality is where its at for whatever it brings, good times and bad.

Rant over.

All that said, I know the difference between when people are genuine and when they are being a stupid ignoramus. I dont get defensive if someone makes a bloop but means well. I would tend to use the opportunity to educate someone and talk about it. 

Kira...thinking about you and your upcoming surgery. Extra BIG BIG HUGS for you because yeah, if things arent organized before hand and you cant work with your team, that can be very scary. I went through a dreadful ordeal with a procedure when it need not have been and I did my part to get things organized and it was all BECAUSE OF LE and all those "lovely gifts it gives you" ...  When things go wrong and you know you did your very best, I tell you it can make you VERY VERY angry.   

purple32

Musical

I couldnt agree more !
in fact, I will tell you , it was kira who understood me when I was upset by someone very knowledgable who suggested  that I should be more positive or else' something bad might really happen to me "  !  (  hmmmm... as if it hadn't? ) She gave me this link , which I  have saved now in case anyone else ever tries to use it on me:

“Positive Thinking”   http://www.breastcancer.org/symptoms/understand_bc/fears/ask_expert/2002_06/question_04

jennifer1

So sorry sometimes when I am down, tend to forget that others have things worse going on.  BC seems to consume me when I am down.  There have been days that go very good but all of us are in the same boat.  I had bilateral and a very small spot on right has caused more problems than the bigger one.  Its handled.  When women in early stages have LE I completely understand and having LE is like a slap in the face everyday saying you had BC,  several friends have told me about the 5 year mark you kinda move on and while we should not wish time away, I do.

Anonymous

Jennifer..BIG HUGS to you too. It is what it is. Youre allowed to feel down. Youre allowed to come to the realization of what it is that works and doesnt IN YOUR OWN TIME FRAME. NOT when someone else thinks you should. Ive heard people refer to LE as worse than BC...more than once. As long as BC doesnt come back... LE is one of the worst "gifts" we can recieve. It  has the potential to be a most debilitating awful hideous bondage in our lives and I can understand anyone who spits the dummy about it.

Sometimes as a coping mechanism I used to say "theres always someone worse off than me" and indeed this may be true, but theres onlly so much mileage this can give you. One day when Hubby and I were waiting in the hospital for some appt, he said to another person waiting, "theres always someone...etc" and the other person said, "show me where" . There was a lot of wisdom in that. It kinda relates to what kira said. It aint no competition and we dont need to go around minimising what is our lot and comparing it to others. I now look at it fair and squarely in the eye for what it is and cope with it the best I can for that moment and whatever it throws up. 

Thanks for that link Purple...but lol dare I look ....awww I tell you if I get started on that positive thinking stuff it could ruin my day.... but nah I'll risk it and go and look soon....meanwhile....

There was a thread here on BC.org and it had some BEAUTY comebacks for those who dump on you with this "you must be positive" CRAP.  It was called  "Be positive  SHUT UP!.....  but is probably buried down somewhere... but heres a link

http://community.breastcancer.org/topic_post?forum_id=5&id=703925&page=1

Anonymous

Oh Purple LOL ... thats the same article that heads up the thread Be positive shut up! which I forgot about. What an excellent article. I was prepared for the opposite and when I clicked on your link my heckles were well and truly up LOL. NOw theyre down... .

purple32

hahahahhaha!
I think that we're on the same page, musical.