I totally hear you @Andij, I am now almost 5 years on from my mastectomy and axilla clearance and had only very mild lymphodema for a few years, which seemed to be under control, but over the past 6 months things have changed a bit (particularly after I broke my other arm and couldn't do the daily self massage) and I'm seeing my physio fortnightly at the moment to have the massages, am wearing a compression sleeve almost constantly, doing the exercises and have had bandaging. Things are kind of stable, but certainly not back to normal as my arm and hand swells at the slightest increase in temperature (so not good right now!).
Having lymphodema feels like a kick in the guts after all we've been through and I struggle physically and emotionally to deal with it. Thankfully my physio is very sympathetic and is confident we can get on top of it, but I admit I do get sick of it all.
Hopefully things will settle for you soon. Best wishes, Jane xx