concerned about flying

sas-schatzi

repost from Bonfires : the three post involving Binney(2) and the question from Gardengumby are in sequence Sassy

Oct 19, 2013 05:19pm Binney4 wrote:

Gardengumby, when you wear a compression sleeve you should also wear hand protection, either a glove or gauntlet (fingerless glove). Here's why:

http://www.lymphedivas.com/handprotection.asp

And here's information about how you can judge a good fit:

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

Unfortunately, there are a lot of not-so-great lymphedema therapists out there, mostly because any PT or OT can call themselves a lymphedema therapist with literally NO specialized training, and even those who are trained usually lack supervision, so they can get careless. So you might want to look around for another well-trained lymphedema therapist. Here's how to find one near you:

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

Wishing you a great vacation, but not a "swell" one!

Gentle hugs,
Binney

 

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georgie1112

just flew for the first time after BMX in mid October. Had previous LE but well controlled. But having LE raise it's ugly head after BMX. Surprised my hand swelled a bit on the 4 hr flight. LUCKILY IT WENT DOWN QUICKLY !!!! And the trunk edema did not get worse! Blessings for that. I wore a compression bra.

I do the hand pumping in my seat. I don't care what people think. Drank lots of water, walked up and down the idle, did MLD but my hand was still smooth and puffy. Always feels like a full time job when flying.

The worst part was the stewardess asked me if I had broken my hand and just starred. (Wasn't exercising at the time). That brought back to the front of my mind the cancer, radiation, multiple surgeries, side effects, the fear... Assume she didn't wNt to know why my hand was bandaged...

Wish I could have found the right words to repond. But I was confused between feeling disheartened, embarrassed and mad. Had no idea what to say as it was not her business. I know she meant no harm, but think someone who works with the public would have more sensitivity.

I have been able to answer these questions before but am tired of the seromas and edema. Guess am more sensitive than I had realized.

How do those of you who wear sleeves and gloves respond to questions? All I could muster as a response was "no" my hand is not broken.

Georgie

carol57

georgie, in that circumstance I think I would have said something like 'I have a condition that causes swelling in my hand and arm, especially in airplanes. Glad you asked, because hydration helps, so can I have a few glasses of water?'

glennie19

Good answer, Carol!

Happy Thanksgiving, everyone!

georgie1112

Carol,

I have said something like that. This is not a new condition for me. Have been dealing with it for 7 years. But an answer like that led to MORE questions like, "What happened to cause that?"

So I am more likely to think of another reply as it is no one's business. Different if I am talking and interacting with someone. Then it isn't as bothersome. But out of nowhere to approach someone and the very first thing a stranger says to you is to ask about your medical issue is tactless. I just need to explore what to say that I am comfortable saying. Will figure it out.

RMlulu

Hi y'all

Trunk LE appeared during rads...just never goes away ugh. I fly about every other month 2 flights(1hr&3hr) to travel between TX&CA. At first only trunk LE, but went for PT Oct to address trunk LE was sent off wearing compression garment for trunk swell spot and sleeve. Now LE has moved into my arm ugh!

Any good utube videos on self care massage...I would rather have LE in trunk than my arm...discouraged. Now returned for PT care...everything compressed.

Any suggestions appreciated.

Cindy

Viji

Hi, if anyone doesn't mind answering this question I would like to know other people's experience:

Is it doable to go on a long flight a week after a herceptin treatment? I know everyone is an individual with different experiences/SEs but please share your experience. Thank you!

ChickaD

So recently I was able to get AmaWaterways to sponsor 2 autumn river cruises in Europe .....for every booking they will donate $500 to breast cancer research, prevention and treatment.

I started a NEW post in the fund raising section.....

http://community.breastcancer.org/forum/63/topic/815789?page=1#idx_1PLEASE 

bookmark it as one of your favorites to maybe join me on one of the cruises or at least to "bump" the post as soon as I have all the info!

Thank you for your help!  xoxo

ChickaD

Oops...here is what I wanted to share with all of you...

http://community.breastcancer.org/forum/63/topic/815789?page=1#idx_1

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AmyQ

Just wanted to add that I have traveled to Italy and France from the US with arm and trunk LE and did just fine. Wore my sleeve starting 2 hours before boarding, all during the flights and for 4 additional hours after landing. I too did my exercises and stayed hydrated. 

I've got return trips coming up in May so I hope my luck holds out.

Viji

I was on 13 flights last month and had no major issues. A whole lot of good luck, I guess.

sas-schatzi

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sas-schatzi

Hi reposting this on some threads, may be old news to some, but to good of info not to pass this on,Sassy

Bluebird144…NJJoined: Apr 2013Posts: 393

13 hours agoBluebird144 wrote:

Knitted Knockers Charities is a non-profit that exists to provide free patterns for knitters and crocheters to be able to make knockers and help mastectomy patients get freeKnitted Knockers made by volunteers.

I love my Knitted Knockers! They are light and soft and warm. Unlike my silicone prosthetic which is heavy and cold when first worn, then it later causes me to sweat.

I wear my knitted knockers inside a regular bra or tucked in the pocket of a mastectomy bra. They are beautiful, and a godsend to those of us with an uneven mastectomy scar.

Knitted knockers website:

http://www.knittedknockers.info/

Fall down seven times, stand up eight.

Surgery 09/09/2009 Prophylactic Ovary Removal (Both)Chemotherapy 02/06/2013 Adriamycin, Cytoxan, TaxolSurgery 07/19/2013 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left); Reconstruction: DIEP flap (Both)Surgery 08/20/2013 Reconstruction (Right)Surgery 08/28/2013 Mastectomy (Right)Radiation Therapy 10/14/2013 3-D conformal external beam radiationSurgery 01/24/2014 Reconstruction: Tissue expander placement (Right)

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glennie19

i got my knitted knockers yesterday. They are so cute!@  Just like the picture above!

sas-schatzi

glennie, so happy you are happy with your Knockers LOL. Pass the thread link on to wherever you can sassy

glennie19

Will do!  Although now I have been diagnosed with mild lymphedema, mostly truncal,,, so I need to wear my weighted prostetic most of the time!

mcgis

My friend, who is a nurse, suggested that I wear compression stockings too while flying?? My CLT suggested wearing sleeves and gloves on both hands and arms but she didn't say anything about my legs. What do you wear?

Yesterday I was on my feet for most of the day and had some mild swelling in my legs but no more than when I was on my feet all day before I had my lymph nodes removed.

juneping

i don't have LE but i do wear compression sleeve and gauntlet for preventative cause. i recently took a round trip flight (16 hours) and i was okay. my fingers did get swollen and after i noticed it, i started to hold/release my hand and the swelling subsided a little. i didn't drink wine and kept myself hydrated the whole time when i was awake.

Lia13

mcgis, I got the same from my angiologist, but she said first we need to run some tests to check overall lymph/blood system especially cause I'm on tam and med menopause (among others, I'll have an u/s on my feet?) and then figure out the stockings, as there are different kinds for different needs. I find my ankles swell (albeit slightly) more easily than before. I'm very interested to read other women's experience/comments on this (the stockings).

carol57

I wear stockings on long flights, 3 hours or more.  I use knee high stockings usually, although a recent bout of bursitis and a cyst in my knee area has my leg swelling a lot anyway, so I bought some LE pantyhose from brightlifedirect.com.  Their Allegro brand is the most affordable one I have found so far.  Wiggling into those things is a hoot, but oh, well.  I do find that since getting LE in the trunk and arm, that whole side of my body swells more with the tiniest provocation than does the other side, so I'm chalking that up to LE's systemic effects.  I worry as much about DVTs as I do any LE swelling in my leg, because I fly quite often for work.  My 3-hour benchmark is because I suspect that immobility adds to the risk for LE swelling as well as DVTs, and if the flight is less than 3 hours, I'm not immobile for very long.  I always wear my armsleeve and gauntlet, though, since I definitely have LE in that arm.

Lia13

thanks Carol57 :-) I'd like to try the stockings/panty hose on my next long flight.

I wonder, as LE has a systemic effect, if it could be of use, at least at the early stages of treatment, to use the stockings/panty hose on a more regular basis to support the whole system till it gets stable. I have a new list of questions for the doc this week! :-)

carol57

Hmmm, good question, Lia!  Let us know what the doc says!

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