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Best Article on Lymphedema I've Ever Read

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Lymphedema is the dirty little secret of breast cancer.

No one wants to talk about it. I was assured by both my BS and PS that with only sentinel nodes removed I wouldn't get it. They were wrong. The ensuing months of trying to get someone to help me, listen to me was infuriating!

I found the step up speak out website and it was a huge lifesaver for me.

http://www.stepup-speakout.org/

I wasn't alone.

I wasn't crazy.

Through that site I was able to find a certified LE therapist.

One of the founders wrote an article this week that is the most beautifully written yet informative piece on LE that I've ever read.

Read it!

Pass it along to others.

Get the word out.

Let others know that they are not alone.

http://www.literarymama.com/columns/archives/2012/10/my-fat-arms.html#comments

New Flower
Posts: 4028
Joined: Aug 2009

nice to see you Dawne. look like you have been doing well. three year have passed
Congratulations

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

I've been away for a while but I'm doing well.

Good to 'see' you. xo

Rague
Posts: 3310
Joined: Aug 2009

It is a well written story of one person's handling of their LE but not how all choose to handle it.

I refuse to be ruled by LE and not live a full life. I can, and do, anything I want to do - not say I can't because I deal with LE and it won't let me. I didn't fight through 2 different rounds of chemo, surgery and rads to just roll over to LE and give up on living the life I fought for. Yes it is an 'inconvience' to deal with day garments, night garments and MLD machines but I will not allow any of that to define me or rule my life. Are some times better than others - ya betcha - but then that's what life is.

I have a new hobby - fly fishing and it definately is a positive. Have talked with my LE guy and he agrees it's good exercise to do.

I find it so sad that there are so many who try to scare (or at least infer to) those new to LE that living life ends with LE developing - so WRONG.

Not all Drs are ignorant of LE! Both my surgeon and chemo Dr both noticed the start of LE before I did. They got in touch with my PA to get me into my LE guy which she did quickly.

LE is not the end of an active life at all unless 'you' buy into that. Are there some accomadations that have to made - sure - but doesn't stop living unless that's the choice made.

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

It sounds like your LE is well controlled and you're able to afford (or have adequate insurance) to get all the services you need. That's great! Not everyone has access to a therapist and the things they need to control their LE.

Not everyone is so fortunate to have a listening ear to their doctors re this condition. Again, consider yourself blessed. Not all of us have been that lucky.

All of us that have LE have to adjust our lives. Some have LE worse than others. I interpreted her article differently ... I thought that she handled it with triumph ... she had to let some things go ... but she wasn't willing to let it control her life. That's the point. Make the adjustments you have to make (some of us have LE worse than others) but don't let it control your life. LIVE! That's the point.

Live your life.

Rague
Posts: 3310
Joined: Aug 2009

You totally missed the point - developing LE is not the end to an active life as inferred by the story writer all the time. It is a well written storry but not an article about LE to educate new ones. There is nothing positive in it about LIVING with LE. I have read so many of the writer's posts at another site and she is definately obsessed with what she believes LE has taken from her how much time she says has to be spent on it - not with LIVING.

Certainly - we are all different but there is no reason to stop living life simply because LE developes. Unless 'you' just want to give up and wait to die. I do deal with my LE daily with fairly significant issues. Yes life is a bit different than it would be if I didn't have LE - have to wear garments and use Flexi-Touch an hour a day but that does not stop me from doing what I want to - riding,biking, fishing (spinning and fly), mowing/gardening during summer, tatting/crocheting, leather work, etc. The more I do the better the LE does.
I do not see my LE guy very often any more but talk to him when time to order new garments or whenever I need to.

Live life to the ultimate and have no regrets about what others tell you that you can't because of their own agenda.

Yes - I am fortunate that I have great care - I'm a Veteran so my care is through VA.

Winyan - The Power Within

Susan

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Sue,

I posted this article because it was an encouragement to me and I wanted it to be an encouragement to others as well.

I thought it was informative, well-written and creative. And I think it also encourages those with LE to live their life. You see it differently and and have taken offense and for that ... I'm sorry. I only ever meant it to be an encouragement.

cinnamonsmile
Posts: 1049
Joined: Dec 2010

You have nothing to be sorry for. It IS a well written article designed to inform and educate on LE and her son. Not everyone who had LE can continue to do all they what. As we know, each individual's treatments and side effects are different. Some can do more, some can do less. We ALL need to respect where the person is at. I, too, see it as encouragement to keep trudging away, even thous she can't do all that she used to.
The person who wrote this a champion for education and awareness of LE to patients and medical professionals. She has given me wonderful advice, as well as another lady she seems to partner up with, and has been nothing but helpful.
Some people, it seems, have a harder time accepting where people are at in their recovery than others. It is not totally about in inactive life, it is about LE, and what it DID TO HER. Good for you if your LE still allows you to do what you want, but please give those who can't the courtesy of a little respect empathy.

pinkkari09's picture
pinkkari09
Posts: 878
Joined: Sep 2009

This is a really neat article. I have lymphedema in my left arm, all the nodes were removed during my bilateral. Then just a couple months ago, I noticed my right arm was swelling, come to find out, my right side nodes were full of cancer, you can feel it through my skin. So now I'm at a loss for which arm to use, i just use the one with the least amount of swelling at the time.
Thank you againg for this articlc, I have it saved, so I can read it thoroughly.
Miles of Love,
Kari.

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

You said in a post somewhere that you live in the midwest?

I live in the midwest too. PM me and maybe we can get together.

It sounds like your doing the wise thing in using the arm that is least swollen at the time.

xo

camul's picture
camul
Posts: 2067
Joined: Dec 2010

I am so glad to see that u are posting again. I had all my nodes (19) removed with my mastectomy and have been very fortunate almost 13 years with no swelling. This is a good article.

Hope you continue to do better. And again so glad to see you back.

Hugs,

Carol

Dawne.Hope's picture
Dawne.Hope
Posts: 820
Joined: Sep 2009

Carol,

That's awesome that you've had no swelling!

I have the swelling in my fingers and pain in my arm when I do too much or when there is a barometric change. I wear gloves and sleeves. I'm working out with a LiveStrong Trainer who knows my issues. It's been a lifestyle adjustment ... no more Body Pump 3x a week and Yoga Class 2x a week ... but I've taken up running again. My life is different now but I'm not going to let it control me. :)

Thank you so much for your kind words.

camul's picture
camul
Posts: 2067
Joined: Dec 2010

I am so glad to see that u are posting again. I had all my nodes (19) removed with my mastectomy and have been very fortunate almost 13 years with no swelling. This is a good article.

Hope you continue to do better. And again so glad to see you back.

Hugs,

Carol

kacee999
Posts: 109
Joined: Oct 2012

Bumping this post up for reader information

cavediver's picture
cavediver
Posts: 607
Joined: Apr 2010

it's been a while since I have been on the Board.....want to thank Dawne for posting the article....very positive..... yes, adjustments and changes for many of us who are managing our lymphedema. Some activities that require heavy weight lifting I can no longer do (like my life of cave diving)....but we can compromise, find new passions in life, and accomplish much all the same. It IS all about living and moving forward....and doing what we have to do. Thanks..... love to you all

cinnamonsmile
Posts: 1049
Joined: Dec 2010

It's nice to see you on the boards, cavediver....I remember you!! Well written post!

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