my life with lymphodema

i was diagnosed with lymphodema in august this year, after being on water tablets for 11yrs . i was so angry but i know a positive can come out of this , and weight loss and looking after me now is important.what i do find hard is standing or sitting ,or writing for too long then i get frustrated, so i try and try to push on .i have vryed so much with the pain but i know now it is not my fault i blamed me , but as i was told it can happen to anyone , so i am being positive i will help myself by looking after me and i know god will heal me

4 Replies

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  • Lymphoedema is never your fault. What I didn't realize was 1 in 3 cancer patients can get it after have Lymp nodes removed or in my case after radiotherapy. Please do not suffer in silence and you have made positive steps to deal with your Lymphoedema. What all of us need to do is make sure that other people including the medical profession learn how to spot and deal with this condition. As funding for treatment appears to be getting worse perhaps we need to educate government. Always be kind to yourself and never feel guilty.

  • Hi Angelbabe. Lymphoedema is just one of those things, unfortunately and we are all stuck with it. I can totally understand your anger at the wasted years when you could have been having treatment to improve your situation. I would emphasise the need to be kind to yourself and trying to stay positive about things. You don't say which parts are affected but I would try not to push through the pain if you can help it, as pain is your body's way of telling you to ease back a bit.

    What I would suggest is that you ask to be referred to a specialist clinic or nurse to get the best advice possible for you and your future. Good Luck.

  • hi lruk its my hands legs and face that are affected

  • Angelbabe just want to echo all posts above. It's a nonsense that you spent so long being treated for water retention. Try to get referral to specialist service and also see if support group that meets face to face is in your area. And know that you are not alone.

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