Hi all
Just watched the DVD. Quite useful, for exercises, and massage techniques. Def work looking at if you haven’t already. I got mine on loan from my lympho nurse. Dx
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I know what you mean about the colour. I have olive skin and my current sleeve is quite a good colour match but the new one I will be having is very dark in comparison. You’d think quite honestly that they would be able to provide at the very least a light, medium and dark. Is that really too much to ask?
I am a bit surprised that you’d have to pay for the glove. I find it incredible that I could have a double reconstruction costing thousands on the NHS but when it comes to the sleeves there’s no money. I know these are different things but somehow lymphodema seems to be very much the poor relation in the NHS.
Sorry for the rant!!! Feel better now…
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Hi all, sorry for delay in replying, can’t use chemo brain as an excuse after so long.
When I say a trial i don’t mean a national trial. When diagnosed i had 14% swelling in arm, got all instructions and as normal didnt keep it up and my arm went up to 25%, mainly around elbow and upper arm, gives a new meaning to bingo wings i tell you, but after a telling off wore the sleeve all the time, next stage was i got rid of the bit from my wrist to knuckles as it went down a little. I sort of got used to it and wore it all the time apart from on hols in florida, i worked out the sweat rash from heat was worse than the swelling and was swimming every day which helped massivly.
I had some surgegy (expander) and due to drain pain and feeling a bit lousey I didnt put sleeve back on for ages and then when being expanded felt bad enough without trying to get sleeve up, so as my appointment with lymph… clinic drew near i paniced and squeezed back into the uncomfi sleeve, although it does support. I was amazed when i had my appointment as it hadnt gone up, so the nurse said to try 6 months without sleeve but if it aches put it on - so far so good, doesnt seem bigger but does ache a bit but then again wearing sleeve made it feel heavy. So, i will wear it when go to Florida on plane but that’s it and if it stays down I will keep you informed.
Sorry for the waffle xxx
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My all in one is much more comfortable. It is actually a better colour match than the last one even though its quite dark. It’s a pain in the backside though when I want to quickly wash my hands or do a messy job and I roll it back very briefly.
I’ve got some white cotton gloves which I put on and then rubber gloves over the top for cleaning etc but it’s hard to move your hands around like that!
I’m still getting some ridging over the wrist area and sometimes around the elbow. I also think my hand is still a little puffy but it isn’t uncomfortable anymore.
Heat is a problem and when I’m doing housework it feels unbearable sometimes. Probably 'cos I’m getting hot flushes too. I am worried about how I’ll cope in the summer.
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Have my first appointment with the lymphoedema clinic this week. Wish me luck… 
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Yes, good luck. Let us know how you get on.
I’ve rung my lympho nurse again and I’m seeing her again next week. I did a trial without my sleeve for a few days and my arm has become more swollen and rather uncomfortable.
I am resigned to the fact that this can be quite a lengthy process in getting the sleeve sorted out.
take care all, Elinda x
phew! Therapist was very lovely and spent a fair bit of time going through things with me. Although my right arm is more swollen than left it’s not enough to be overly concerned so good news is i just need to keep an eye on things, take the usual precautions to avoid cuts , scrathes , burns, infections etc but I don’t have to wear a sleeve for now and will just need to go back for a check up in a few months *dances round living room*!
but it looks like Santa must have kept the receipt and taken his present back for now!!
So relieved - was worried it was one more thing to add to the list of rubbishness but it’s dealable with, thank goodness.
Have been shown how to do lymphatic massage and what excercises i can do which was good as i was in two minds as to whether it would make things worse or not.
Think i am more aware now that it is a sliding scale and pretty much everyone who has had their lymph nodes tinkered with will be running a bit below par when it comes to the lymphatic system so it’s not a case of yes you have it or no you don’t or that it’s a sudden thing but but that it’s always there lurking in the background and there are degrees of it and at the moment my swelling is within OK limits.
will be thinking of you all as i know how lucky i am to be avoiding ‘the beigeness’ for the moment! so thanks for your advice so far and here’s to improvements and more positive news for you all too in the coming months
take care all
DGWx
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DGW - that is good news! Do you know how much bigger your other arm is? My lympho nurse said mine it had 100 mls more fluid than the other. I think that was just under 10% volume but I might be wrong there. I’ve been wondering about the sleeve as it all seems worse since I’ve starting wearing it.
Norberte - sounds like you’re having lots of problems like me. I’m seeing the nurse on Tuesday pm to get her to see what the sleeve is doing to my arm. Certainly helps in places but has caused problems with the hand.
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How long would they need to keep trying to invade your veins? Would a line of some sort be the solution for you? I’m off to see my quack today to see if she can refer me to have a portacath fitted, as that seems to be the most complete solution. Might be worth asking.
Hi Girls,
just thought I’d let you know how I am getting on with my puffy hand. I am now using the kinesio tape and that is so much easier than the damn glove. Luckily at present the swelling is mainly on the back of my hand so the tape is placed over that and left on for four days at a time and so far fingers crossed (but not too tightly unless it causes swelling!) the tape is working as effectively as the glove and is so much easier to deal with. Obviously I don’t know what the future will be but hoping that I can contain it with the tape. I agree with all of you it is a really horrible side effect of BC that we are left to deal with. My onc thinks too much fuss is made about Lymphoedema aghhhhh! I felt like hitting him he should be saddled with it before making such statements. Disgraceful that the tape and replacement gloves in black are not on the NHS. Yes maybe a lymphoedema walk would be a good idea to bring awareness of the problem.
When I was wearing the glove and likewise with the tape and people say ohh have you hurt your hand? I just say that unfortunately I had a surgery that has left me with lymphoedema they look completely baffled as if I have some tropical disease so I just smile and keep them guessing!!
Good luck to you all
Bev
Noberte - don’t apologise, that’s what we’re here for!
I’ve had all sorts of other problems post treatment - severe acid reflux, achilles injury, neck, back, shoulder pain, headaches and it’s the combination of everything that can really get you down.
Having lymphodema was such a blow on top of everything else. I agree it isn’t fair!!
I don’t know if it helps but someone once said to me when I knew I was going into difficult or anxiety provoking situations to visualise putting on a carapace or shell that would protect me. Every now and then I have to remember to use this.
Let us know how you get on and hope it’s all better than you think it might be.
take care, Elinda x
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It is wearing, I still get so easily tired and get cross with myself. I think Norberte that sounds like a wise move re your meds. Hope it works out for you.
I saw my lymphodema nurse yesterday. She measured my arm and it had stayed the same. She then measured my unaffected arm and that had gone up, then she weighed me - oops I’ve put on 6lb since October. Not good. But the good news is that the percentage difference has now gone down so my affected arm has actually improved (masked a bit by my weight increase).
We discussed the summer and she said it is a case of trying without the sleeve sometimes and see how I get on. She says some women can manage it with SLD and wearing the sleeve sometimes.
There is a sleeve with a much higher cotton content. It is a bit thicker although cooler but guess what - you can’t have it on the NHS in our area at least! Elinda x