Hate my sleeve for lymphodema !

[diachristine3]

hello

i, too,  got lymphodema in arm and hand  2 yrs after masectomy.

does anyone know what is best - and what the difference is "medically"   between the half  and full finger glove ?

I have an arm sleeve 

thanks

pam

[riversidedawn]

My lymphoma is mild, in fact it got worse with the sleeve! I've got a sleeve with separate glove which makes it easier for hand washing etc. I keep som latex gloves by all our sinks, in the car etc to pop on for dirty/wet jobs.

I've just had reconstruction surgery and lymphodema has actually got better as it appears the surgery might have cleared a blockage. I do massage 3 times a day and for the last 3 weeks haven't needs sleeve or glove but have them for back up.

When first diagnosed I kept a diary and experimented with a day with glove, day with sleeve and glove and one without. Mine's better without, but have the sleeve just in case.

[dillybub]

Hi my story is just the same as yours and I had my sleeve fitted today it also has the hand part and 8 hours on I hate it and have just taken it of.  I am going to order myself one without the hand as it is uncomfortable, slips on the gear knob when I drive. Like you say they scare you and life just feels sh*t at the moment.  No sitting in the sun, be careful when gardening, be careful with my cats etc.,

I am going to wear it religiously until my next appointment on the 25th May when I will be shown how to massage.  Not allowed to until after the finish of my radiotherapy so they wouldn't show me how to do it. This seems silly as I have to massage my cording.

Like you I just want to get back to normal and enjoy the summer.

We must compare notes in a few months. Mine was 17 % apparently you can get the percentage down and if it falls to 5% it is borderline.  With moderate lymphoedema this is possible. Fingers crossed for both of us.

Dilys 😊

[Anneemay]

I know the feeling Lisa I've just been measured and fitted for one on my right arm. My Lymphoedema only occurred last October when I was diagnosed with pleura mets. Like you I have been given the warning that if I don't wear it my arm will get bigger. I know some people would consider it vain but trying to wear a nice blouse or jumper now ( some won't go over the sleeve) makes me feel more conspicuous and that people are looking at me differently. I have been given the ones which covers my hand, it's constantly getting wet when I forget to pull it back when washing my hands. I know I shouldn't moan but like you Lisa I feel it's another reminder of my health issues. Ann xx

[Flint]

Hello Lisa

A friend of mine had full clearance and mild lymphdema and wore a sleeve for a while. Now she rarely if ever needs it.

However, she did manage to see a specialist lymphodema nurse who explained how to massage to help drain the fluid. Apparently  it is a light type of massage (directed towards the heart) almost as if fingers just brush the surface.My friend said it works,

I am sure this would help you but you need to be shown how do it correctly.

Have you seen a specialist lymphoma nurse? They are a bit thin on the ground. I do hope you get the help you need and can eventually leave the sleeve off if only occasionally. My friend is still very careful to cover her arms to protect against insect bites and is very very careful to cover arm against scratches when she is gardening.

I hope this gives you reason to feel a bit better. 

[Rattles]

Hi Lisa, you have my sympathy! Lymphodema is pants! I have it too! Unfortunately mine swells badly without my sleeve and I hate it too. Some people do have transient lymphodema. Some peoples' improves. Actually mine has, but do need to wear a sleeve.
I'd try and get it under control and then you can experiment - keeping your sleeve off for short periods and see what happens. Closely monitor. Always wear for exercise, heavy housework etc.

Hope this helps.

Rattles, xx

[Lizzy_BCC]

Hi Lisa55, 

Welcome to the forum but I am sorry you are going through this difficult time. Our users are very supportive and I am sure they will be along to share their experiences soon.

You may also wish to try posting on the Lymphoedema board to give more users a chance to reply.

If you want a listening ear you can always call our support line at 0808 800 6000 who will be able to talk to you about your experience.

Best wishes, 

Lizzy

[Lisa55]

Hello Ladies
I haven't posted before but this site has really helped me through my treatment. I had all the lymph nodes removed from my armpit along with the offending lump, 6 rounds of chemo and a month of radio. And 3 months on I'm moaning about a flipping sleeve! But I hate wearing it as its a constant reminder of what I've been through. Without it my arm and hand are mildly swollen but the nurses have put the fear of God in me, explaining it could get much bigger if I don't wear the sleeve. I feel like I've been a good girl and done everything asked of me and for some stupid reason this is just too much! I want to burn the blasted sleeve!!
So has anyone had mild swelling after having all their lymphs removed and not worn a sleeve and things have stayed the same?