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New to LD and a quick question

7 REPLIES 7

Re: New to LD and a quick question

On Youtube, Michigan State University has a Lympedema Self Massage (i.e., Lymphoedema--they can't handle diphthongs!) video. If I can post a link?: <>
It has a different routine than I was taught, so I don't follow it for "what to do" but I thought it was really clear on "how to do" the stroking. You'll have to put up with the American accent...
Thats a good point about where to start, Jane. Everyone I talked to after the diagnosis but before I saw the Lympoedema nurse, that is my Breast Care Nurse, my surgeon and the oncologist, told me something different, and NOBODY explained it in anything like the correct way. All the best,
Kathy

Re: New to LD and a quick question

just a quick addition - regarding the "stroking the kitten" action (good description), you need to start at ths shoulder, not the hand.... and stroke upwards gently. What you're doing is making space gently and slowly. If you start at the hand, you're pushing fluid into tissue that's already full. I agree, the Haven stuff is brilliant. long term, life-style changes needed... thanks for the tip about drinking - hadn't heard that one... Jane

Re: New to LD and a quick question

Hey, Andie--it turns out that exercise dvd is also available streaming online (I think?) and if its the same it seems really good. The woman who leads it not only shows you what to do, but tells you why--which I think is really great. I wish I lived near Leeds, where the Northern Haven is--it looks like a lovely resource.

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Re: New to LD and a quick question

Hi
As well as all the information that you have already been give, The Haven have a really good exercise routien for helping with LD. Give them a ring and they will send you their DVD.

Andie

Re: New to LD and a quick question

Hi Twinkle,
I've had lymphoedema since March, and am only recently coming to terms with it. Such a shock! I, at least, should have been expecting it, since I had node clearance, but I have learned that many, many women with only one or two nodes removed go on to develop lymphoedema.
Yes, it is quite normal for your arm to ache and even hurt, and to feel cold (especially in this weather).
First of all the important things to do right now are: elevate your arm (between waist and shoulder height not over your head) as much as possible. Drink drink drink water. Hydration helps lymph flow. It will help if periodically you can raise your arm above your head and clench and release your fist ten-twenty times (slowly, it's all about helping sluggish lymph move OUT of your arm). Deep breathing from the diaphram (fill your lungs) also helps get this lymph moving. It helps if you stroke your arm (which feels ridiculous) again slowly and someone told me "like you're stroking a kitten". Do your hand, then your arm in bits (maybe four or five) coming up over your shoulder at the end.
There is a really great US website called Step-up, step-out (google that plus lymphedema and it'll get you there) with a lot of amazing help. The Lymphoedema Support Network (lymphoedema dot org) is also good, although not a patch on SUSO. Finally there are some really amazing women on one of the US forums "breastcancer[dot]org" where if you search on lymphoedema you will find a real wealth of practical information and real experts who can answer your questions cheerfully and quickly.
Finally, the big thing to be careful of is cellulitis. Start being careful now. I have antiseptic cream & spray in the bathroom, the bedroom and my handbag. The smallest cut, bug bite, or hangnail can allow infection into your arm and the stagnant lymph provides a perfect culture for infection to grow. If you do get a cut or bite, apply antiseptic and WATCH it. If it seems to be becoming infected do not wait--go to the hospital. If you feel like you are getting the flu and your arm becomes warm or hot--same thing--go to hospital. Cellulitis unchecked can lead to a long stay in the hospital or worse, and every incident of cellulitis makes the lymphoedema harder to control.
It all sounds really overwhelming, but hang in there--it is both manageable and bearable.
Quail

Re: New to LD and a quick question

Hi Twinkle

Please feel free to call our helpline team tomorrow for further information and I am posting the link to the BCC lymphoedema info page here, there is a publication on the page which you can read or download:


http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/lymphoedema

Helpline number 0808 800 6000 weekdays 9-5 and Sat 10-2

We also have an 'Ask the nurse' email service which you can access here although replies can take up to 5 working days:

http://www.breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions/ask-nurse

Best wishes

Lucy

Re: New to LD and a quick question

Hi Twinkle
I was dx with LD in June did have some pain in my arm more of a heavy ache? but cant say it has ever felt cold so cant say if that iss normal really dont know much about it myself! I had grade 3 and WLE also last year but only had 6 nodes removed so thought I was very low risk of LD apparently not!
Hope someone with a bit more knowledge comes along soon
Jill
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New to LD and a quick question

Hello all, was diagnosed with LD last week, have been given a sleeve but told not to put i on until tomorrow after i have seen the breast surgeon to rule out clots. I was diagnosed with Grade 3 breast cancer last year, had WLE and axillary clearance followed by 6 months of chemo and 20 rads.

Quick question about LD.. my arm has been icy cold and painful and was wondering if this was normal???

Thanks in Advance

Twinkle x