Can anyone answer some questions for me?
I was diagnosed with Lymphoedema yesterday. It is only mild and the bcn is confident it can be controlled with the exercises she has given me. She has said I don’t need a sleeve as it is not too bad. I have been noticing swelling when I have been out for walks.
I know that I shouldn’t carry heavy weights on the effected side but other than that I don’t know much else.
I am part of a small puppet group. Is it ok to carry on with this? They are hand puppets and I have to hold my arm up above my head for the length of each song. I can’t use the other arm as I have a shoulder problem.
I do taekwon do, which involves a lot of punching and hitting pads. Is it ok to carry on with this?
Is there anything else I should know?
I know it’s not life threatening but I am feeling really down again today and maybe knowing if life can go on as before it will help.
Caroline
Hi there Caroline
I’m sure others will be along soon to offer information and advice for you, but in the meantime, we have a couple of publications which you might find helpful to read. I’ve given the links below, they can be either downloaded or ordered through the site:
Living with Lymphoedema
breastcancercare.org.uk/upload/pdf/bcc5_lymphoedema_booklet_largeprint.pdf
Reducing the risk of Lymphoedema
breastcancercare.org.uk/upload/pdf/Web_Reducing_risk_lymphoedema.pdf
Hope you find this information useful.
Best wishes
Louise
Facilitator
Hiya
Sorry you have to join in on this. I too have it mild, but it is in the wrist and hand, which is more noticeable and as far as i am concerned, harder to shift (it has been 3 months, no change)
The puppet above your head wont do any harm at all.
It may be that you notice the swelling when walking because you have your hands hanging by your side. perhaps try walking with your hands in your coat pockets.
Punching and hitting is a definate no-no. Surprised you werent told to avoid that by your BCN in the first place after your op!! I do combat/ boxing style aerobics, which is quite dancey and am punching nothing but air and that is not sudden, quick or jerky or repetitive.
Be kind to yourself and do the excercises the nurse recommended. I wouldn’t have thought they were enough. I have sleeve and massage too.
Good luck x
I would echo what Norberte says in that you would benefit from seeing a specialist lymphodema nurse.
I have to say I’m surprised she hasn’t given you a sleeve or more information. My lymphodema is very mild but the nurse said it was about getting it under control before trying to go without the sleeve and just self lymph drainage (something else you need to be shown) and exercises.
It may be worth you getting the DVD produced by the Lymphodema Support Network: lymphoedema.org/
The other place that has some great information is The Haven in London. I don’t know where you live but if that’s viable you could try there. They have a good fact sheet, although it’s about risk the same applies:
thehaven.org.uk/sites/default/files/EJ%20Lymph%20at%20Risk1.pdf
Personally I wouldn’t do anything like taekwondo until I’d seen a specialist.
Positivethinker - as I understand it, any exercise using the arms will increase lymph and could exacerbate the problem. That’s why they recommend only 10 minutes of lymph drainage exercises.
Elinda x
Hi Elinda
I used to do 40 mins a day, then reduced it to 20 for that very reason. Thankyou for mentioning that about the 10 minutes only, I will do just the LD excercises for now and give the other stuff a break. That is the very reason I appreciate this forum.
Cheers x
HI Positivethinker - hopefully that might make a difference. It was my lymphodema nurse who told me no more than ten minutes.
I’ve learned so much from this forum, it’s fantastic. Elinda x
Ive got lymphodema mildly too. I wear a sleeve if I’m having a hard day ie. alot of arm work such as washing down tiles in bathroom or putting up displays at school (although I no longer have to do this) Best thing I do is use a walking pole when out for a walk. If you keep the poles quite high, the hand doesn’t hang down and therefore doesn’t swell. Ive tried using just one pole on bad arm and the good arm actually swells more because its without the pole. My rings always did feel tight on long walks. (4hrs) even when young and thin. Best thing to help it if it does swell is lying down with hand on a pillow. These days after about 10k I need a lie down anyway.
You learn what to avoid.
Regards
Chinook
Thanks for all your replies.
I have spoken to my taekwondo instructor tonight and she thinks I can adapt things so that I don’t overdo things on my left arm. I don’t want to think about giving it up completely as I am due to take my black belt in October, and it is the goal I set myself whilst I was having chemo.
Thanks for the tips. I will give the walking poles a try or try to remember to put my hand in my pocket.
Caroline
I think the fact that you do Taekwondo would be another good reason to have a sleeve, if only to wear during that. Did you tell your BCN about it?
Completely understand about wanting to achieve your goals. The physical problems are one thing but it’s easy to forget the psychological impact of BC. Good for you! Elinda x
Hi all!
Saw the lymph. nurse at hospital clinic yesterday and my lymph. is getting worse very quickly - 62% bigger on lower arm and, I think, 30% on upper one - quite bad IMO! She thinks it’s to do with damage from rads (2nd lot) last year causing a lymph blockage. Anyway, I’ve been given some deep, firm (and painful!) massage to do on the affected areas - what with exercises, SLD and the compression sleeve, this is starting to be like a daily part-time job! She is also very keen to do bandaging, which I’m having done over a week (3x) after the half term hols.
My questions are to everyone out there - has anyone else had this done and did you get a permanent reduction after the 24-hour sleeve wearing period, which she said was for 6 weeks ? And, has anyone else had this rads. damage and what were you advised to do? Feeling a bit cheesed off with it all TBH!
All the best, Sarah.
Elinda
I decided to give my bcn a ring. She has agreed that I should have a sleeve fitted for taekwondo. Thanks for suggesting it.
Caroline
Your very welcome - hope it will help. Elinda x
Hi all!
Anyone had experience re:bandaging? - see my previous post.
Thanks,
Sarahx
CMW - there are different types of sleeves. I had to try a few before I found one that worked for me. I have an all in one sleeve/glove as my swelling was mainly around wrist area. I found when I wore just a sleeve it made my hand go a bit puffy so I switched to the all in one sleeve/glove.
You can also have a sleeve with a separate gauntlett.
Bandaging - Sorry Sarah no experience of this but I’m sure i’ve seen this mentioned before. Hopefully one of the others can help with this.
Elinda x
Thanks, Elinda!
Anybody there??? (have exp. of bandaging) - knock 3 times on the table! Not looking forward to it as I have a bit of a hand-washing fetish!
Sarahx
I have been to a Taekwondo competition today. I managed to win a Gold and Silver in the English Championships, which is great. But even better I met someone there who has had lymphoedema for 6 years and she still trains, instructs and competes. She wears a sleeve much of the time, but she says it doesn’t cause her much problem. It has definitely given me the boost I needed.
Sarah, it may be worth starting a new thread with bandaging in the subject. Others may notice it then. Sorry I can’t help you.
Caroline
Hi caroline
Just jumping in to say hearty congratulations on todays acheivement.
Andie
Hi Caroline!
Congrats on your win today - so good! Yes, I’ll start another thread - sorry to jump on yours with both feet! I didn’t read it all properly and thought it was a kind of general lymphoedema thread. Thanks,
Sarahx
Sarah & Andie
Thanks 
Sarah, don’t worry about joining this thread. I was concerned that you didn’t seem to be getting any answers. Hope you get help from others.
Caroline