Forum Discussion
Lymphoedema Blues
Today is not a good day. Have just seen my lymphoedema physio who I've been visiting for the past few years and who has been helping me manage my lymphoedema pretty successfully up until now. When I was first diagnosed with lymphoedema, it was towards the end of my treatment and I didn't take it too well as it felt like the last straw, particularly after such a long ordeal. Today, I was right back in that head space as I was told that despite my wizz-bang new (and expensive) compression sleeve and regular lymphatic massages my measurements are getting worse and so the next step will be some heavy duty bandaging to try and regain the shape and size my poor arm should be. I know in the grand scheme of things it is not the worst news I could receive but that didn't stop me bursting into tears. I'm just so sick of the constant reminders and the seemingly never-ending side effects that erode any shred of self-confidence I might have. Thankfully my physio is a beautiful, sympathetic soul and seems to be pretty confident that the bandaging will make a difference. I really hope so.
Thanks for listening. Jane
Thanks for listening. Jane
25 Replies
- I too have a German made garment and it knocks the socks of the others I
have tried. In heat and humidity, getting it on is a trial but once on, it's not hot at all. - @Jane221 great news. Although it's a pain, keep up the garment wearing and massage especially in summer. I am going to have to wear mine on my big holiday later this month... However I know from experience that it is worth the inconvenience in the long run. Having said that, I am going to have a sneaky night out of my garment at my daughters Year 12 graduation dinner this week. Will massage twice as long to make up for it ;) .
Interestingly there was an international lymphedema conference in Cairns a couple of years ago that I was lucky enough to attend. In the consumer Q & A session with a top notch specialist from England I asked about the complications of wearing a garment in the tropics and he was quite at a loss how to help me. When things got really bad I would have areas on my glove, particularly in the area of the webbing between my thumb and first finger that would almost rub raw...something a lymphedema patient does not want happening. I was very lucky to have a cancer OT at the local hospital who worked tirelessly with the place in Germany where the custom made garments I wear were made and they eventually made a much better fit garment in that area. Having a good therapist who knows what they are doing is paramount as I am sure you know. I hope you continue to improve.
Paula xxxx - Yayyyyyyyyy!! That's excellent.
- Great news
- Great news, Paula! It's hot here in SE Qld as well! All the best to you and to @Jane21 ! xx
- That is excellent to hear, Jane. Yay for you! xxx
- I thought of you Paula while I sweating under my bandaging and wondering how the heck you deal with it in your part of the world, you must be made of sterner stuff! Anyway, good news is that the bandaging came off yesterday and there has been some improvement (woo hoo!) so am just back in the compression sleeve at the moment and hopefully things can continue to improve :) :)
- I hear you girls re the heat. I am currently in a garment in Far North Quensland!!! I hope things settle down soon Jane and the bandaging does its job. That massaging is high on my agenda at the moment too Brenda.
Hugs girls.
Paula xxx - That's true Brenda, the heat always makes things worse for me too so have to be extra careful through summer and try not to exert myself too much through the hottest hours of the day.
- Another thing my physio said to watch was the summer heat will effect the arm and she was right. Last couple of days I can feel pressure around my shoulder building and I need to massage quite a bit more. I hope I don't need to put back on the sleeve and gauntlet, its too hot.
