Just wanted to write about a few things that I think no one tells you when you are diagnosed with lymphoedema, please feel free to add anything that annoys you too!!
Couldn’t agree more! I have just started wearing glove/sleeve combo and it’s a pain! I am a nurse so hand washing is a priority! I find the worse thing is the constant severe ache! Writing and computer work dont suit at all!! I was contemplating graffiti with a fabric pen jazz it up! I will keep checking this post just in case anyone has bright ideas!!
Good luck!
Great post…couldn’t agree more with what you have said.
I luckily only have the sleeve to wear! Which I must admit I have got used to, although with summer coming I’m not so keen!
My pet peeve is being asked “oh dear, what happened to your wrist?” Never quite sure how to answer that! Although tempted to say I was attacked by a dinosaur! Or bitten by a shark! So much more exciting than “I have Lymphoedema” which no one has ever heard of anyway!
Was hugely embarrassed at first but am 2 years down the line now so just wear very thin cardis in summer, sometimes I don’t care and just go for it:smileyhappy:/:smileyfrustrated:.
There are sleeves that you can buy from a well known auction site, did buy some (at the beginning) but have never used them, they are in different colours and have a similar texture to tights.
Yes people asking “what’s happened?” is also awful because I do not want to go into the whole story and am sure as it’s mostly strangers who do ask, they really don’t want to know regarding BC, soooo I’ve just hurt my arm??
Another thing, funny lymphoedema stories? Nope can’t think of any! haha!
Though, I did think something was wrong when my lymphoedema bracelet seemed to getting tighter and tighter, how ironic.
And isn’t it wonderful when patches of fluid gather? Have an arm that reminds me of Popeye at times…xx
Hi Katy, just wanted to say thank you for telling the forum about what it feels like to have lymphodaema, I have been so scared to develop it and I don’t think the information out there actually says it as it is so those of us who don’t have it but worry about it - I do constantly as my BC was diagnosed March 14 and had two ops the second taking out all the lumpy nodes, for me have weird feelings in the arm now know what to look out for in ‘Janet and John’ terminology. I think what I am feeling is nerve damage but it does seem to feel like I have a tight tee shirt on my arm
Yes we a pretty sight with our beigeness, I am not fortunate enough to tan so I have one freckly arm and one beige one, have recently bought some sleeveless tops too so must be getting braver, good for you lottie:smileyhappy:!
bondgirl, if you are worried get it checked, give your BCN a phone, my arm felt very heavy and I had a couple of patches where fluid had gathered, fingers crossed for you.
Oh yes another thing how do you keep those gloves clean??? They are only nice when you take them out of the box after that they seem to attract bobbles, yuck xx
Well here it is ladies the lovely warm weather I do love a bit of sunshine, what I dont love is swollen fingers and a puffy arm ( even when I wear sleeve ) I shall get the vest tops out at the ready I WILL wear them regardless of the sleeve and when people ask me for the upteenth time what have I done to my arm, I shall smile and say I have lymphodema and await the look of complete confusion !!
I’m so glad I found this thread and enjoyed reading your posts and your lovely senses of humour!
I am also a reluctant member of the BBC (Beige Bandage Club) and thoroughly agree with everything you’ve all said. I’ve lost count of the no. of people who’ve felt free to ask what I’ve done to my arm - totally ignoring my more obvious visual defects (crazy hair re-growth, lack of eyebrows/lashes, pronounced limp throught neuropathy etc). I usually say it’s lymphoedema and see their eyes cloud over , but if I’m in my more usual c**p mood I snap that it’s a side effect of chemo. Generally that’s a conversation stopper!
I met someone who had a black sleeve which was less obvious with what she was wearing so might see if I can get hold of one of those although I do need the gauntlet to match which might be a bit more prominent. On the plus side it might mean less need to wash it so often !
I also have lymphoedema in my breast and am having my first mammo tomorrow since DX Feb '14 so am dreading it . Not sure I will be able to cope as still very sore as I also have a lot of painful scar tissue resulting from central lines inserted for chemo that became infected. Will need a very large G & T for medicinal purposes after !!!
Haha The Beige Bandage Club, I love it!! Perhaps instead of telling anyone we have lymphoedema or sore arm blah, blah, we can just say its a special club, exclusive, members only and that it’s the only way you can be recognised, no special handshake needed just the beige…
At my docs you can be prescribed black or beige, even though don’t really like it the beige “goes” with more outfits!
My mammo was very painful, just the front squish (didn’t think it was painful before) and I did say to a BC friend recently that perhaps I have a little in my breast?? Could that be right? Would be very grateful for any thoughts xx
Wow, ladies …once again I’m so happy for everyone sharing. I had six lymth nodes removed and have done 8/28 radiotherapy. I wonder if this is worth the risk? Your thoughts?
Sue
Was thinking perhaps the B.A.G’s, Beige Arm Girls then thought that maybe inappropriate:smileywink:!
That is so interesting about mammo’s now being painful, will ask next time I see BCN, wasn’t sure if it was something to do with rads but it makes much more sense being lymphoedema because I am now almost 4 years along.
I only had 4 nodes removed, rads also covered axilla area, have heard of people only having 1 node removed or all removed and developing lymphoedema, some never get it! So it’s difficult to know if it will be you, just always be aware, as the quicker you are diagnosed the better, hopefully things then, can be controlled with glove/sleeve xx
I’m wondering how much risk I have with three nodes removed. Left WLE and 3 nodes. My job is lifting heavy items (20 lb meat in big pans) putting hands in cold then hot. I have lots of burns on forearms from oven and I am left handed. I am seriously worried about going back to work . Any ideas? Ty xxx