Hello Ladies I have a question that I cant get realistic advice about. I am going to Greek islands in June for a week, I have been told I have 12% lymphoedema in hand and just below elbow and also a ‘pocket’ near my ld scar. obviously have been told by professionals to wear sleeve all the time including at night!. how do I manage on holiday with sleeve i.e on beach,swimming etc. I dont want 'odd’arms and also find it unbearable in heat due to hot flushes from zolodex inj.I am 46yrs old and was dx in 2008 and have had lyphoedema about 14 months.This is the first holiday abroad since dx and am really looking forward to it but not knowing how to manage this is really bothering me. I do all the recommended cares ie skincare, massage,exercise and compression. Any advice would be really appreciated.
Hi amberkitten
I’ve not had a hot holiday since having lymphoedema, so can’t speak from experience of the heat, but hoping this bumps it for you and someone else can help more directly.
I asked a similar question to the lympheoedema nurse a few months ago. Like you, mine is not a high %, and I do everything else religiously. I was hoping she would say it was ok to leave it off, but I’m afraid, of course, the official advice I got was that holidays, hot weather, risk of bites etc-were the time when I should keep wearing them. However, she did then say that they recognise that wearing them with a swimming costume or strappy top isn’t what you want to do, and that having a great holiday was important. So I’m thinking that I will be sensible and wear it most of the time, but allow the odd break with my cossie or nice tops. (I’m only holidaying in Cornwall-was worried about the heat, and finding long sleeved tops etc, but have realised that may well be no problem with the weather this year anyway!!)
Best wishes, I’ll read any other replies with interest. Have a great holiday
C x
Hello Amberkitten,
I had the same problem and the advice I was given was to use my brains. Don’t get the arm sunburned, don’t get bitten and go with a 2 week course of antibiotics, Augmentin is recommended, just in case you do get bitten or get cellulitis in the arm, that’s when it gets very red and hot and painful. You must wear your sleeve on the flight and for an hour after. You should never wear a sleeve in bed according to my lymphoedema/physio.
I used P20 sun screen which, although expensive lasts all day, read the instructions in case you swim a lot etc.
Use an insect repellent and be careful at dusk when the mozzies are out.
Do your exercises just as if you were at home and keep up the moisturizing.
If it is very hot be prepared with a long sleeved beach top or a blouse as a cover up.
I was in the Canaries last November, 90 degrees some days but I was sensible so did not have any problems and I am very fair skinned.
Hope this helps.
E
similar to above i have about 24% lymphodema and have been to florida 2 times and spain once, was told had to weigh up the benefits but after day 1 in 100 degrees heat i had a rash in the crease of my arm from sweating - so i left the sleeve off, dont know if its made any difference till i go for next check up but doesnt feel it, i covered it when it got too hot, wore factor 30+ and got a really good bit spray, it got a bit red one day with sunburn but kept it covered, moisturised and had a lovely time minus the sleeve, ensured wore it both ways when flying thought and left it on for hours after - loved not wearing it and wouldnt recommend it but to me i felt better without the sweating and as could see skin was very clear when it was getting burnt.
Other thing i did do was to try and swim every day to exercise it well
I went to Rome last August with 13% lymphoedema in my right arm. While sight seeing, I used to wet my sleeve which kept me cool in the 40+ degree Italian heat. I also made sure I had high protection sun cream at all time. While by the swimming pool, I used to remove the sleeve for a couple of hours a day.
It did not have any adverse effect as at my following check up, I was down to 5%.
Just enjoy your holiday.
Hi
Hope you don’t mind me jumping in on this thread Amberkitten.
It was interesting reading all these posts. I’m going to Turkey this week, its my first time abroad since dx too and have been worried about this, I have lymphoedema in arm and leg (this due to DVT). Lymphoedema in arm is 28%, leg 12%.
I spoke to my lymph, nurse who advised me if I was finding it too hot and uncomfortable, to wear my sleeve/stocking at night instead. She also said didn’t need to wear it while swimming. She did advise as well to wear compression for several hours after flying. I have bought one of them “Magicool” sprays hoping this may help.
I’m also worried about the 4 hour flight, if swelling does occur how uncomfortable that will be.
Lisaf - did your sleeve fit you ok on your return flight.
Take care x
Back from hols, wore sleeve on plane both ways no problem. I also wore the sleeve indoors and in the evening but during day left it off. I used factor 50 and also swam everyday and moisturised religously. I dont feel the arm has gotten worse but wont knpw until next measuring session but more important I had a lovely,chillaxing holiday and now planning next one!!!
Hi
Glad you enjoyed your holiday. I found the flight ok too but on second day developed cellulitis. so wasn’t too well for a couple of days. I did wear my sleeve after this as normal but did struggle with heat at times.
My arm seems ok but going next week to have measurements done.
Happy holiday planning amberkitten
take care
I went to Greece last year and also wore sleeve at night as has been suggested. I found the threat of mosquitoes worse and had to retreat inside as soon as it got dark with all windows and doors closed. It was difficult. But I survived. I have not been away this year to anywhere hot. Heat I find seems to be a big problem for lymphoedema and my arm is now 58% bigger than the other and I do feel the heat was a contributory factor. A word of warning on Magicool. I too took it. But it didnt get further than the jobsworths at Gatwick where it had to be thrown in bin. Protestations that I was ill and had cancer fell on deaf ears. Good luck with that one.