Forgot to mention in my last thread, also now got mild lymph odema. Very worried I will lose some use in this arm as I am an artist. Painful at times and arm feels hard to the touch.
Waiting for an appointment with the specialist nurse. What can I expect when I see her? Will this condition improve?
Irene
Hi Irene, the nurse will measure both arms, and probably give you a support sleeve to wear Also advise you on skin care and massage. Till you see her you cah get some aqueas cream and lightly massage it in starting at the top of your arm, then from your wrist upwards, then from the hand. the oncologist described it to me as butterfly kiss movements very light 
I have good and bad days, but my swelling is mainly in my hand. My arm aches too. It may improve, but the plan is for it not to worsen
Good luck
Marge
Hi Irene
Here is a link to a Breast Cancer Care booklet called ‘Living with lymphoedema after breast cancer’ which may help to answer some of your queries, you can read it via the following link:
breastcancercare.org.uk/docs/bcc_lymph06_0.pdf
Please do call our helpline for more support and information and to talk through the concerns you have on 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Hi Irene,
I have lymphoedema in my hand. It has definitely got better since going to the lymphoedema clinic. It comes & goes, and I am beginning to get to know what will set it off and what won’t. I have a compression glove which I wear when I am going to do something that makes it worse. For me that seems to be cooking, which is a pity as I enjoy cooking.
Hello Irene
I developed mild lymphodema after a very small injury to my finger . I was seen by a specialist doctor and nurse as soon as it could be organised.Both arms were measured with an electronic measuring device which showed the results on a monitor. I was given a whole arm sleeve and subsequently shown how to do lymphatic drainage massage by the nurse.I had to badger a bit for that though. I do some massage every day -in fact several times per day . For instance at my desk at work I take a minute ,a few times during the day, to stretch my arm and give it a quick rub . This has the bonus of making sure my operation side doesn’t seize up and keeps the full range of movement I have. If I’m at home watching tv I will also do some massage -but the fuller type from the opposite arm first. I have regular checkups and it hasn’t developed into anything more than a very mild case even though Im otherwise quite careless of the dos and dont. For instance Ive just had to come in from gardening (without gloves as I couldnt find them !) and take a rest as my arm is showing signs of over use. From previous occasions I know I will just have to rest and massage for the rest of the evening and all will be well. You begin to know your own condition after a while and Ive had this for nearly 3 years now.
My mother also developed Lymphodema after her DX 25+ years ago -but crucially the advice she was given then was to rest and NOT use the arm. Her arm swelled like a balloon, she used a V pillow to rest her arm on continually when sitting and she couldn’t carry the lightest thing in her hand.This is unlikely to have happened if she was diagnosed more recently.
Ive been told that once you have it ,you have it for life .But light use and massage seems to be the way to ensure that the condition doesn’t worsen .
I hope your consultation with the nurse goes well.
You can do some more research for yourself before that using a search engine - look for lymphodema and uk . I cant give you the link as apparently this somehow is not allowed.
Cheers
Wynn
ive also got lymphodemia in my arm ,its quite severe now and developed a year after mt mastectomy ,i attend a clinic, but find theres not much information about the condition,as i also have a frozen shoulder on this side its not very good to do exercises, as i cant move my arm ,im having physio but this is not helping me ,my arm aches constantly and i cant lift anything heavy which has resulted in me not being able to return to work. ive read loads of info on the condition but feel there should be more help for sufferers. my treatment is appointment once every 3 mnths and i feel it should be sooner as the symptons vary whatever i do .does anyone else feel like this , sorry to be such a moaner but i was hoping to be back at work and feel my quality of life will never be the same. lynn xx