Has anyone with lymphoedema had any experience of getting travel insurance?
Moya xx
Just back from a week in Cyprus ,with declaring my bc history,taking tamoxifen and having lymphoedema,cost me around £28 with Insure pink, have used them since diagnosis and for me they have always come up with the best price. Happy holidays x
Thanks, Sandra. Have people found they need to be three months post active treatment before Insure Pink will offer cover?
Moya xx
I couldn’t get through to Insure Pink, so after looking around I went with my second best which was, surprisingly enough, Asda. For the first time I have gone to an annual multi-trip cover; great, as this encourages me to make the most of the opportunities whilst off work! Apart from BC/LE, I’m fortunate to be a generally healthy character and fairly easy to insure. I’m not sure Asda would cope with complex medical stuff.
Do declare the lymphoedema, whoever you go with, and insist they do not exclude it, as it’s very much more likely to cause an acute problem, ie one that needs medical attention today or at latest first thing tomorrow, and can’t wait until you get home, than simple BC. The BC itself you could probably declare and exclude, apart from the risk of needing to cancel if your treatment plan changes. If you’re a spontaneous person who only plans a fortnight ahead anyhow, that’s not very likely. Oh and apart from the raised risk of a DVT type event if you’re taking tamoxifen, but if you have other risk factors for that too, then maybe you shouldn’t be flying?
Also, go heavy with the best insect repellant, DEET, citronella, whatever but try really hard to not get bitten. Forget eco-friendly stuff, we are talking about your safety, you *need* to modify your environment and kill the little blighters! I know Scotland is lovely in the summer but it’s much safer in the spring, and I’m taking midgey places like Venice and Amsterdam (including transfer to connecting flights at Schipol, after my last experience there) off the menu, that is to say, I’m taking myself off the menu.
And remember your sleeves and creams, and to take the agreed cellulitis treatment protocol with you, plus your prophylactic antibiotics (and doctor’s letter) if you have them. Happy holidays!
Thanks, hymil - really comprehensive and useful advice. Sounds like you are a pretty seasoned traveller!
Moya xx
Ah if only, Moya, no really I’m just paranoid and retentive, but I like to know WHY I’m getting insurance, and look at what the risks actually are and how I can reduce them myself rather than wait for them to happen. Course you can’t stop the plane falling out of the sky etc, but that’s a next-of-kin problem, doesn’t greatly bother me! Far worse to arrive with no clean knickers or find you’ve sat on your specs or forgotten to print the homeward boarding pass. Or printed it out and carefully left it on top of the piano. LOL.
Oh, speaking of seasoning, salt. Prevents dehydration in hot weather, replaces electrolytes lost in sweat. Little sachets you can bring from the cafe, sprinkled onto a tomato, mmmmm 
and if little twists of white powder doesn’t get you into trouble these days, I don’t know what will!!!
Hymil
Thanks so much for your posting. I’ve just organised insurance for my holiday later in the year and realised I’d forgotten all about my lymphodema! I guess it seems the least of my worries right now.
I will phone up and include. Is that right that then that the GP should prescribe a course of antibiotics in case we need them and a letter when we go away? I’ve not heard of this protocol, do you know any more about it so I can discuss with them? Do you have to pay for the letter?
The other thing I was thinking about is how to find out what the word for lymphodema is in Italian (not sure if the root of this word is latin which means it could be very similar).
Has anyone found anywhere that translates the word lymphodema?
as for mosquitos, I get bitten to shreds in England by them and anything else that bites. I can’t Deet myself up 24/7, 365 days a year. Apparantly the thinking is that they like your smell but they even bit me a lot during chemo when I smelt like a vat of chemicals. All I can say is that there are probably some mutant species out there now!..
Elinda x
My info comes from the Lymphoedema Support Network, I was given it by my macmillan nurses who care for my lymphoedema. There’s a range of green leaflets (which i’m sure are also available online from them at lymphoedema.org) you are looking for Cellulitis, also for Holidays and Travel. They say the standard treatment (unless you have issues with this antibiotic) is Amoxycillin 500mg tabs x3 daily for 2 weeks, and it may be wise to take them with you.
A doctor’s letter would help if our lovely customs people wonder why you have twice the usual course with you when you don’t even seem to be ill, and also will start the process much more easily and quickly if you do have to seek help while abroad.
They also have a document called Consensus document on the management of Cellulitis in Lymphoedema, it’s online here: lymphoedema.org/Menu4/4Cellulitis.asp [go to this page and half way down there is a link to the pdf in green] which I have printed and I bring it with my travel docs, as we know not every doctor knows as much about LE as we might like.
Wiki (that fount of all knowledge ohyeah!!) translates LE as linfedema; search for the above pdf using google.it and then click on <traduci questa=“” pagina=“”> (“translate this page”) to get the article in best google-italian. Wishing you safe travel.</traduci>
Wow thanks Hymil! You have got yourself so well informed and I appreciate you sharing your knowledge. I will definitely do all you suggest.
thanks again, Elinda x