Positive approach (most of the time anyway..)

[Squinny]

Morning all. Ok so once you've been advised that you are not suitable for LVA are there any top gurus out there to advise/support staying fit, mobile and healthy with Lymphodema? GPs are so busy for long term conditions and in my experience not too well informed. I would just love some positive input about living with lymphodema (present company excepted of course) I know I'm lucky to have beaten cancer and still be here just want to thrive and not just 'survive'

On another note does anyone know where I can get a t shirt with lymphedema slogan on it as want to raise awareness at a charity fun run?...

Thanks for reading and have a good Tuesday everyone ;0)

[Lynora]

Have you been in touch with The Lymphoedema Support Network? I am sure they would be a able to advise - and potentially get you involved with fund raising. Do you get help from a Lymphoedema clinic?

[Jennymary]

Hi, with regards the t shirt, I agree with Lynora, the LSN may be able to help with that, with regard exercise, staying fit etc (you must be fairly fit to do a fun run), with all due respect to LSN, MacMillan, breast cancer care and all the other brilliant support services we have, during my cancer journey I came across an American website, Breast cancer.org, put Lymphodema into the search button and you'll get all you need to know, good luck with your fun run xxx

[Squinny in reply to Jennymary]

Hi Lynora and Jennymary, thanks for your replies I will indeed investigate the LSN further for more information and resources and the USA site you suggest too. I am lucky to be reasonably fit but know that I have to do all I can to try and stay that way, I pay for Mld privately as we don't have a clinic in my area. thanks for your continued support here on the network it's always an invaluable source of information and sense of community.

[Kir6 in reply to Squinny]

Hiya, love your attitude, I'm the same. Although I'm Primary LE not secondary. Are you on Facebook by any chance? There are a couple of American run pages I'm on there that might interest you also including an LE running and fitness page 👍

Hannah x

[CCT67]

Ditto to all the above! I also was rejected as a LVA candidate -such hard news to swallow. There are fantastic LE support and inspiration groups, as well as LE and fitness/exercise LE on Facebook (t-shirts too). Another great web resource in addition to LSN is the Lymphedema Education and Reserach Network LE&RN. Actress Kathy Bates is their spokesperson (2 time cancer survivor and has LE in both arms). The website library of symposiums and webinars are free and fantastic, and it has links to several LE bloggers, as well as info on LE cure research. LE&RN is based in NYC but has chapters worldwide. Great you have MLD therapist - I also have to pay for mine privately. I think most of us do no thanks to the NHS cutbacks!

[Lynne-byn]

Hi huni you can get a t-shirt printed cheap on ebay, I've had fun slogan ones done 😀. Fantastic news on beating cancer 😀sorry you've this to deal with now x

[Squinny]

Evening ladies, just back from swimming so leg feeling good. I am always so touched by how warm the responses are to posts on this forum and I appreciate the time taken to make them, it is with the ability to share, catch up on how things are for others in the same situation and pool all our experiences and ideas that we are all able to draw strength to live lives to the best of our ability (most of the time) and to not let lymphodema get the better of us. I will look into your suggestions some more, although I am not on Facebook Kir6 but am sure will be able to access most of the info elsewhere too.

Thanks again - off to think of witty t shirt slogans 🤔 xx

[Lynne-byn in reply to Squinny]

You'll have no bother thinking off witty slogans especially once you read a few off them, have fun x