Lymphodema

Dear Dane7,
I hope that you will hear from other posters soon. I am sorry to hear that you have developed lymphoedema in your arm and can understand that its distressing for you. Please feel that you can contact us here on the National Cancer Helpline (Tel: 1800 200 700)and we may be able to put you in touch with another lady with lymphoedema who is a peer to peer volunteer. We also can direct you to a group called lymphoedema Ireland.
Kind regards,
Cancer Information Nurse

Hi Dane7
Sorry you are waiting so long for a reply. I'm hoping you were getting private messages. You'll remember we were diagnosed around the same time in 2012. I had no problems at all with lymphoedema for a year. Then after a year, some of my fingers swelled up. I was horrified also. I was seen by the specialist (eventually!) and fitted for a sleeve and glove. I thought they were they ugliest things. I remember the nurse saying you'll get used it it and I was thinking I don't want to get used to it, I'm sick of things I have to just get over!
Anyway the funny thing is I have got used to it. Maybe it's because it really didn't get much worse. I go to the local cancer support centre for Manual lymphatic drainage about every two weeks. It's very nice and relaxing. I wear the sleeve and/or glove for housework or long drives or anytime my arm feels tired. I'm sure wearing it all the time would be better but I can manage like this so it's good enough for me. Keeping up the original hospital exercises is definitely a good idea. Also recently I was told that squeezing a ball when sitting around watching TV etc would help keep the lymph moving.
I hope this helps and that you've had some help in the meantime. I don't log on very frequently but if you send me a pm I'll get an email to check it.
Good luck with everything.
Jo x

Hi Jo
Yes I remember we were walking pretty much the same path and I remember you said that it was after a long drive in the heat that yours started. Well ditto .... was stuck with a road closure so in the car for nearly 3 hours and when I got home roasting hot arm and swelling. No I didn't get any replies. Thanks for yours. Will be fitted for sleeve and glove and I guess ... "will get used to it"! Will pm you and let you know how it goes.

Dane

[color=#BF00BF:3l6ksp8d]Hi. Just saw your post today and felt so much for you. I too have lymphoedema in my arm, my left arm, not my dominant arm. I have it nearly 2yrs now. It came on after surgery pretty quickly, let's say I had it while undergoing chemo. I think the thoughts of lymphoedrma is worse than the reality. I too thought it was the end and unbearable but now I wear my sleeve without a thought and I wear short sleeves also. My arm/hand/breast area do swell with fluid but mld works so well to get the swelling down. I attend physio regularly and get great relief from this. It's now a part of me, part of my "new" body. I see pictures of worst case scenarios but catching it early and good care prevent worse case scenarios.

Take care and try not to over worry........this is new to you now but in time you will gather info and tips from others, with lymph oedema, on how best to care for your arm/hand. [/color:3l6ksp8d]

Hey girls I was diaganoised with Lymphodema yesterday and like u said Dane I am feeling v down about it too! Feel like I'm being thrownback into Cancer and I really don't want to be there had moved on nicely still in my head a lot but had moved on! Was diagnosised in July 2011 had masectomy chemo and rads! Jesus cancer really us the gift that keeps on giving! Have my glove and sleeve on but it's soo bloody ugly! Have got used to covering up my boob didn't get recon cause I gave other medical issues which also means I have a scar on my other arm that gas to me covered up! Omg I could cry! And when people say I it could be worse I feel like screaming at them I know they don't know what to say and yes it could be worse a lot worse but still! ! That's my rant over!

Hi Karen, I'm really sorry you had such a blow when you were trying to move on. It is a horrible set back. I am responding, not because I am similarly affected (I have not been, thus far, cross fingers and everything else), but because I feel for you as I read your post. I distinctly remember how horrified I felt when I was told all about the risks of lymphoedema - it was one of those blasted side-effects which I had no notion of.
I hope you have been able to get some relief since you wrote, and at the very least that you feel less terrible about it.
Please accept my sympathetic cyberhug.
Take care of yourself!
C

Hi Catherine1964

Thanks so much for ur reply! I am actually doing very well wear the sleve and glove every day and do U know what it's not really that bad! It has improved so that's positive! When I look back at that post I remember feeling so sad and now I have just accepted it! Like everything else that has been thrown me! Thanks so
Much for ur reply! I was not told I should wear the sleve on a flight and it was after a flight to Lanzorette that it started to swell! So if u have been given a sleve do wear it as a preventive measure!
Thanks again Karen x

Hi ladies
I'm doing ok with the lymphoedema, no change. I haven't done MLD in a good few months, mainly due to cost. I was told about the sleeve for flights and I did a long haul flight last year using it and no problems. I got my first sign of lymphoedema after a long session of driving. Now I keep the sleeve in the car or handbag and put it on whenever I think I need it. My hand is more affected than my arm so I also have a glove.

Just an interesting piece of information to share with you. I was at a talk by a lymphoedema specialist nurse and she said that the action of the water over your limbs while swimming is the exact same pressure applied during MLD. So get those swimming togs on! My New Years resolution for 2014 is/was to learn to swim and although time is running out on the year, I am determined to swim a length by Xmas.
Jo