Lymphoedema

Hi 

I had lymphedema too - it comes and goes now 18mths after treatment. I went to a lymphedema nurse who showed me how to massage and gave me an elastic neck collar to wear in the house/bed. 

Its got better but not gone completely - but its something im resigned to now. I feel like I got off lightly in the scheme of things - as everything else is good. 

Hope that's helpful but having said that, everyone is different 

Rachel 

Thanks Rachel yes that's helpful. If I can get it a bit better it will help. Did you also do the exercises? x

Lymphoedema isn't a cosmetic issue, to me it is fundamental to how I feel, I have it in my leg so it really affects my mobility. Take your lymphoedema seriously and get some treatment for it. There are some good "Centres of Excellence" around the country but very often you have to prod them before they really deliver a quality service. I did, and now have excellent support in particular from a brilliant and very experienced nurse. I feel if I am in control of my Lymphoedema then I am more in control of my general health. To some extent that is a fallacy because I have incurable cancer, but it does help my positive attitude. Good luck on your journey.

(male, 67, diagnosed incurable and inoperable myxoid sarcoma January 2022, beating the odds, Lymphoedema since August 2023)  

Yes I did but not very consistently - I found when I was on holiday talking lots it was better. Keeping it moving and stretching and applying pressure works best. 

Had lymphoedema under my chin, unsightly, massaged daily and it soon disappeared, still massage after shaving, daily.

Oh, that’s great to hear, really reassuring, thank you! 

Scorpio2710 said:

I'm doing them diligently but just wondered how others got on with Lymphoedema - can it be controlled to the extent that it's not too noticeable?

Hi Bridget. 
mine wasn’t too bad and I managed to stroke it away. There is a tiny bit left but it’s not hard and I’m the only one who notices it. 

Thanks Dani. Mine’s not hard, just floppy - you can tell it’s fluid-filled. Did you get instructions on how to massage it, or just did what you thought? x

I just did what I thought. I was persistent though. I gave my neck 50 strokes each way every time I went for a wee

It took about two weeks and needed an occasional top up. 

Scorpio2710 said:

I want to also say a big thanks to this forum which really has been a godsend through my treatment

And that’s why we are all here to prop each other up. So pleased you are doing so well.