lymphoedema after a year

Hi Josephine,

O you poor thing! You have been through so much already. I hope the fact that it is localized means that it is less advanced.

I am so sorry this has happened to you but I do want to thank you for taking the time to post. It is a good reminder to us all to continue to be careful - I guess forever

I hope you recover well and wish you all the best for your holiday.

Hugs

Kath

Oh Josephine, sorry to hear this has happened. For what it is worth I don't do any exercises however I am really careful about wearing gloves doing dishes and leaving gardening to hubby

I hope you get a physio apt next week. If you have not had an apt confirmed then get on to them on Friday. Do you have a compression sleeve for the long haul flight? You will need one of these regardless of current flare up. The physio Dept should be able to provide - I got mine in Beaumont where I was treated.

There are private lymphoma therapists out there. I have seen such providers with stands at the national breast cancer conference which is usually held in Sept. The Irish cancer soc might be able to give you somes names else your BC nurse may have recommendations for those local to the hospital.

From what I have read, early treatment is important so please try to get seen as soon as you can.

Best of luck and enjoy your holiday. Are you off to some where nice?

Hi Josephine,

Sorry to hear you are having problems with lymphoedema. Hope you managed to get an appointment with the physio next week and you get some relief before your holidays.

As mentioned by LindyLu, you absolutely need to get a compression sleeve for your long haul flight.

Another reminder for everyone is to be very careful in the sun especially with the arm where the lymph nodes were removed. Best to keep this arm covered or use very high SPF.

Happy holidays Josephine.

Roseo

Hi ladies
Thanks for your replies. I didn't get an appt, apparently physio not in until Mon so I'm hoping for phone call tomor. I will ring her if I don't hear anything by lunchtime. I have a compression sleeve which I had just been to the hospital for a week ago in preparation for the flight. However, the physio I spoke to on the phone said that as it was measured up when my arm was fine, it most likely is not the right size now that I have the lymphoedema.
The swelling isn't huge but my arm has been feeling heavy and tired and my hand hurts constantly. I know its not the worst thing but its put a damper on the holiday. The kids are so excited, after being so disappointed last year and I should be happy when I look back at this time last year but I'm actually seeing the flight and heat etc etc as another challenge. And just to top it all off, when I went to the GP it was pouring rain and nowhere to park so I tried to squeeze into a tight spot and ended up hitting the car beside me,damaged that car and put a fine dent in my husbands car!
Ah it could all be worse. I'll let you know what happens with the physio.
Jo

Hi again Josephine,

I found this article on travelling with lymphodema. It might be helpful.

http://www.lymphnet.org/lymphedemaFAQs/ ... elTips.htm

And have a wonderful time!

Hugs

Kath

Kath - Thanks for the very informative article on lymphodema.
I'm going to make a print, put it with my passport and re-read each time I go on a trip.

Josephine - How are you doing? Did you manage to get an appointment with the physio last week?

Roseo

Hi Kath and Roseo
Well I got here! Greetings from Pennsylvania!
I got to see the lymphoedema specialist last week and got fitted for sleeve and glove. Real fashion statement, ha ha. First I thought I'd never be able to get used to them but I persevered and got used to wearing them. The glove is ugly and tight but my hand is what's most affected so its a must. I was advised to wear both as much as possible on holiday but I don't know how that's going to work out with the heat and humidity. But no I'll effects after the flight so far.
Kath, thanks so much for the article. I followed every bit of the advice on it! You always give us really useful links, you're a star!

Hi Josephine and RoseoHH,

Thank you so much for your sweet messages. You ladies have made my day!

Josephine, I'm delighted to hear that all went well for you, that you saw the specialist and that your journey went well. Have a wonderful, wonderful time in Pennsylvania.

Hugs

Kath

Hi Kath
Update! I couldn't cope with the sleeve and glove in the heat and humidity. Consequently my hand was like an elephant last night. But I've spent the night wearing both things and with my arm elevated on a pillow and my hand looks ok this morn.
Im self conscious about being in a swim suit and was dreading the moment but I took some ones great advice to wear one of those Sun protection tops that kids wear and hey presto, disguise! And no sunburn. The life guards had them on too so it wasn't only me and little kiddies.
I hope these ideas are useful for anyone else heading to the sun.
Jo x

Hi Josephine,

Thanks for the update. What a brilliant idea for swimming! Totally inspired.

I've read that swimming is a great sport for controlling lymphodema so make the most of the hot weather to get some swimming in.

Hugs

Kath

Hi Josephine,

Hope your hand is still doing OK and you are getting used to wearing the sleeve and glove?

The sun protection top is a great idea for avoiding sunburn. I'm going to buy myself one.

I do aqua aerobics twice a week and this really keeps the swelling down. Maybe this is something you could do when you are back home.

Enjoy your time in Pennsylvania.

Roseo

Hi girls
I actually managed to leave the glove on all day yest cos we were shopping and its all air con everywhere. And like wearing shorts on hol that you wouldn't be seen dead in at home, I didn't care about looking odd! When I was at counselling I learned to have a prepared response to awkward questions so I was ready to deflect off the questions of `oh what happened to your hand` with `I had surgery last year and my hand gets a bit sore `. I presume everyone thought I meant handsurgery, didn't get any more questions and mostly people went on to tell me about some surgery or injury they had!
That's great advice about the swimming and aqus aerobics. I will def have learn to swim better this autumn. Loads of places near me, just lazy about it up to now.
Bye for now