How do I cope with lymphoedema :(

Since getting bitten on my wrist a few weeks ago I’ve now got mild lymphoedema in my hand and arm. I got my glove and sleeve yesterday and I didn’t realise until then just how miserable lymphoedema is. The glove and sleeve are hideous, it looks like I’ve got a false hand and I got quite upset when the nurse told me I’d have it for the rest of my life and will always have to wear them. How do u cope with it, the glove is so cumbersome and u have to keep taking it off to wash ur hands etc. I’ve been wearing it for two days apart from night time but it looks more swollen than it did before. Is this normal and when does it start getting less swollen? The nurse said she’ll teach me manual drainage but can’t do it till treatment is finished and as im not yet halfway through 8 cycles of chemo with rads to come , its gonna take a good few months yet. I hate this, it’s just another thing to bring us down again, sorry to be an old whinge x

Hi hjv

I am also relatively new to LD but I have a sleeve with a mitten all in one and to keep taking it off when I needed to do something wet or mucky was just not a possibility so I now have a box of cheap latex gloves in the kitchen and another one in the bathroom. I also make sure I have some tucked in the bottom of my bag when I go out.

Within reason I have got used to wearing the sleeve more because I feel I have to, than because I want to, and most of the time I do manage to forget it. People asking what it is sometimes make me really cross and snappy although I have so far resisted being downright rude.

The last prescription I was given, I arranged with the chemist to get me black instead of the horrible beige and I seem to cope better. It is like when I went through chemo I resisted a wig because it was pretending to be my hair and the world and his wife could see it wasn’t. The same with the sleeve why pretend its not there when because of a medical situation it has to be. Thats just how I cope. You will find your own way.

Good Luck- whinge all you want, we will listen

Andie

Thanks andie, I’ve ordered one glove in black as well. I was a bit annoyed with the nurse though as she only gave me the choice of 3 yukky beige shades which I waited 6 weeks for, then at the fitting I said how horrible the colour was and that I’d rather have a black one and she said 'oh they do come in black as well! What! Why the hell didn’t she tell me that in the first place, silly mare.
I spent the first couple of days trying to hide it but by the third day I thought sod it and tried to just ignore it. I guess I’ll get used to it.
I’ll get some latex gloves thanks, good idea x

Hi there hjv

I wondered if you’d had chance to have a look at our publication ‘Living with lymphoedema’. I thought you might find it helpful, so I’ve given the link here to the page where it can either be downloaded or ordered:

www2.breastcancercare.org.uk/publications/treatment-side-effects/living-lymphoedema-after-breast-cancer-bcc5

I hope you find this useful.

Best wishes.

Louise
Facilitator

Hi Hjv
I have lymphodema. Mine flares up now and again so I can just wear sleeves just when it’s bad or when I’m doing stuff I know causes a problem. Here are some of my tips.
* Lymphadiva in America (Google it) have fabulous sleeves. Very expensive but I got one for my birthday.
* I walk/ramble alot and using a walking pole it helps to prevent swelling if you keep pole long.
* I cut a long sleeve t shirt so I just had the sleeve and neck to wear in midgy areas as well as using insect repelant. I did the same with a fleece because that arm and shoulder seemed more sensitive to the cold the first couple of years. I get some odd looks but I’ve a BC pin on both.
* Keep arm skin in good condition with a good handcream. I like the hemp one from Bodyshop.
* As for questions the children at school asked at first but I explained simply and they accepted it. They often stroke my arm the first time they see the sleeve but it doesn’t bother me.
I’ve had my five year all clear and though inconveinient at times I am still here.
Keep your chin up.
love
Chinook