Lymphodemia

Hi  I have been living with Lymphoedema in my arm and now hand for approx 7years! I see a specialist nurse every 6months to be measured and I wear a compression sleeve daily. It's a combined sleeve which covers my arm and hand but recently due to swelling fingers a glove has been added! 

When I first wore the sleeve I was VERY self conscious although no one ever seemed to mention it. Then the summer came and the sleeve was more noticeable so people would say "oh dear what have you done"? Mention Lymphoedema and you see their eyes go blank! Then you explain it's a side effect from breast cancer, or you just stop the conversation! Dependant on who it was and my mood!

After a few months I barely noticed the sleeve. I put it on each morning just as you would put on any other item of clothing! In fact I forgot about it and when asked "what have you done" I would look blankly at people and then look at my arm and think oh that!!

In winter the sleeve is fine, in the summer or is bearable most of the time. Must admit over the last week or so I have struggled to leave it on! But I know my Lymphoedema is under control so I feel okay to give myself a few days off!

The reality is Lymphoedema is controllable but only if you follow the advice you are given! Massage, exercise and compression! Avoiding damage/bites and cleaning and watching any bites/cuts that you may get! 

If theres anything else you are worried or concerned about, please feel free to message me or ask on here! I hope that's helped a little. Sal xxx

I was diagnosed with it during lockdown, and I've been wondering how I'll manage questions when I go back to sometimes working in the office, especially if I'm wearing shorter sleeves.

So far I've mostly worn mine to running club and I think people there just assume it's an exercise thing so I've only been asked once (by a friend who already knew I'd had BC so explaining wasn't a conversation killer).

Sal thank you so much for your reply, you have given me so much hope! All I could think about was the fact that life expectancy didn’t reach 5 years! (According to googling on the internet).

I will definitely follow advice, and knowing that people like you are out there living with this and getting on with their lives is a great boost! Thank you so much for your inspiration.  

Take care lovely lady and keep safe and well Sue xx

please STOP looking at Dr Google! Stick to this site or Breastcancercare. Lots of information on Google is outdated or incorrect! 

Lymphoedema does NOT reduce your life expectancy! Yes it is a life long side effect and once diagnosed you will always have it, although it can improve over time IF you do as you are advised! 
I’m sure once you have seen the nurse and talked it through properly you will understand that it is something you will learn to live with! 
You might feel a bit pi**ed off to begin with and have those “why me?” Thoughts! But then you will slowly learn to accept it and just get on with things! 

Please don’t think it will reduce your life expectancy in any way, as it won’t! If I can help at all with anymore questions you have, while you wait to see your nurse then please feel free to get in touch.

Sal xx