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The Joys of Lymphoedema NOT??

22 REPLIES 22
Nenya
Member

Re: The Joys of Lymphoedema NOT??

Thank you for your replies, think it's a case of 'suck it and see' 😀 xxxxx
Wendyy
Volunteer

Re: The Joys of Lymphoedema NOT??

Nenya have you heard of the Lymphoedema network. My therapist told me about it. There's lots of info and support there. But generally keep up the excercise and skin care routine and if at all possible avoid the burns, easy to say I guess. Good luck x
Nanny_Sal
Member

Re: The Joys of Lymphoedema NOT??

Hi Nenya, I don't think anyone can predict who will get Lymphoedema and who won't. The risk is there for all of us. I had total clearance, and developed Lymphoedema in the Breast first. Although my BCN kept telling me the swelling was just a delayed reaction to Rads!! It clearly wasn't. It then moved on to my arm/hand!

I had followed all the rules about being careful with that arm, not carrying heavy bags etc etc, but got it anyway. All you can do is keep an eye, as for lifting at work, I would start back slowly (if that's possible) Maybe discuss things with your BCN or Oncologist. Although in my experience none of them seem to understand Lymphoedema completely, so finding out information is hard work.

Good luck with everything, and just feel reassured that lots and lots of women don't go on to develop it! But if you do, you very quickly learn to live with it! 😉 xx
Nenya
Member

Re: The Joys of Lymphoedema NOT??

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
katytc
Member

Re: The Joys of Lymphoedema NOT??

SAG's (sand), TAG's (tan) and BAG's (beige):smileyhappy:!

Am def a "beige" girl, says so on the box!! xx

Nanny_Sal
Member

Re: The Joys of Lymphoedema NOT??

Wemblo you would be surprised how many different names they can come up with, but we all know it's BEIGE!!! 😝 Maybe they thought Sand sounded nicer!! Or maybe Dark Cream!! Tan?? That could be a good shade for the summer! 😜

So I realised yesterday that I have beautiful tanned fingers on my affected arm! My hand is white, I look like I have dirty fingers 😛 How stylish! That's before the really nice weather starts!

Anyone else not really looking forward to the hot weather that they are forecasting! I find my swelling is much worse in the heat! Although at least I'm currently not getting the hot flushes that I was getting last summer!!
Wendyy
Volunteer

Re: The Joys of Lymphoedema NOT??

BABS, BAGS, BBC lol. Made me smile thankyou.

I only had node biopsy, none actually removed but came round from surgery to be told they'd burned my forearm with the diathermy. My physio and therapist believe this is the cause of my lymphodema. It is only mild and I'm able to keep it under control wearing just a sleeve (no glove) when excercising, driving long distances etc. I'm about to venture to sunny climes on a long haul flight so will wear it then as well. Suppose I should make my capsule wardrobe various shades of beige to blend, although the colour on my prescription said sand. So here's another suggestion S.A.G's sand arm girls, also quite an appropriate name for how my boob looks at various times of the day.

Keep smiling 😄
katytc
Member

Re: The Joys of Lymphoedema NOT??

Was thinking perhaps the B.A.G's, Beige Arm Girls then thought that maybe inappropriateSmiley Wink!

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

suebeehoney
Member

Re: The Joys of Lymphoedema NOT??

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
lottie63
Member

Re: The Joys of Lymphoedema NOT??

I too have Lymphodema in the breast and my mamogram was awful and it hurt for days after !! no matter what bra I buy and I have recently been professionally measured I get indentations all over the breast from seams and the like 😞  oh look theres another joy I found... Grrrrr

 

We could be the B.A.B's -( Beige arm brigade) it has a certain ring to it do you not think 🙂

 

Love to all L x

 

Nanny_Sal
Member

Re: The Joys of Lymphoedema NOT??

I definitely have lymphoedema in my Breast, and I am almost certain that it started after my first Mammogram following treatment. It's okay most of the time, but I find buying bra's a total nightmare!! As my Breast changes sizes throughout the day!! 😁 Oh it's just FUN FUN FUN!

Love the idea of an exclusive club though 😉 although think the 'BBC' is already taken 😃
katytc
Member

Re: The Joys of Lymphoedema NOT??

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

 

 

 

Nanny_Sal
Member

Re: The Joys of Lymphoedema NOT??

Gill, take some painkillers a couple of hours before your appointment. Also mention to staff that you are still sore. The lady doing mine totally understood and did the good Breast first. Then when squashing the other told me to say if it was too uncomfortable and she would release it slightly! It is after all not supposed to be a torture devise 😃 even though it feels like one!! GOOD LUCK!! Xx
gmc
Member

Re: The Joys of Lymphoedema NOT??

Hi Ladies

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 !!!

Best wishes, Gill

Nanny_Sal
Member

Re: The Joys of Lymphoedema NOT??

Totally with you lottie, my arm aches more and fingers resemble juicy fat sausages!! Not the most flattering look! As for the sleeve.......anyone else find the sleeve seems to look really grubby after just a short while. Even if you wash it every time you wear it 😁 Especially the bit around the hand and thumb!

Oh an one to add to the list!! Try applying sun cream to children WITHOUT getting it all over the sleeve.....hmmmmm it's interesting! 😃
lottie63
Member

Re: The Joys of Lymphoedema NOT??

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 !!

Enjoy the sun ladies and stay safe

 

L xx

katytc
Member

Re: The Joys of Lymphoedema NOT??

Hello lottie and bondgirlSmiley Happy!

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 lottieSmiley Happy!

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

Bondgirl
Member

Re: The Joys of Lymphoedema NOT??

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
lottie63
Member

Re: The Joys of Lymphoedema NOT??

Hi Ladies

                 I feel the same, I love to wear vest style tops in the summer as always hot with the flushes ! but they look so awful with the sleeve on and I constantly get asked oh dear what have you done to your arm ?, Lymphodema reply always insures a quizzical look... The sleeve is uncomfortable and hot, and no matter how many times they measure me I always seems to get creases at the elbow

I have one white arm & one brown throughout the summer lol stands out like a sore thumb !! I have lymphodema in the breast also so 1 pink booby 1 white, carry on like this and I will be multi-coloured 🙂 hey ho onwards and upwards, love to all

 

L x

 

 

katytc
Member

Re: The Joys of Lymphoedema NOT??

Hello Cotts and Nanny_SalSmiley Happy!

So glad you agree.

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 itSmiley Happy/Smiley Frustrated.

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

Nanny_Sal
Member

Re: The Joys of Lymphoedema NOT??

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!

Will be back on later with more I'm sure! Xx
Cotts
Member

Re: The Joys of Lymphoedema NOT??

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!
katytc
Member

The Joys of Lymphoedema NOT??

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!!

Sleeve and glove:

How do you use the toilet? Glove on glove off.

Washing hands? Glove on, glove off.

How do you eat? Glove on, glove off.

Washing dishes etc? Rubber gloves, really annoying.

No one tells you that you will have a constant ache in your arm.

No one tells you that your shoulder will hurt.

No one tells you that your breast side will ache.

No one tells you that your arm feels as though it weighs a tonne.

No one tells you that when you have your sleeve and glove on all day that you literally feel as though your arm is being strangled.

No one tells you that it is basically impossible to find a bra that doesn’t dig in even though you have been professionally fitted.

Summertime dilemma what DO I wear with my beige arm and hand??

Any thoughts?? xx