Hi everyone
I have been given my prescription for my beautiful tan coloured compression sleeve and glove… are there any other places that do them in interesting colours?
Thanks
Hi Poannie
That was quick! You only posted earlier today about your hand…
If you want black, white, cream (I think)chocolate brown, navy or grey-blue, Haddenhams Healthcare (based in the UK) can do these. The ones I get are called Venex and they are very light and comfortable.
You can ring them up, order and pay by credit card, BUT they will also need to have your sizing and compression class confirmed by whoever you get your regular sleeves from (or a private lymphoedema therapist who has measured you). It normally just means your lymphoedema nurse picking up the 'phone and having a quick word with them. It shouldn’t be a problem as Haddenhams ‘skintone’ sleeves are already used by the NHS and the lymphoedema nurse/clinic should be used to dealing with the company.
Other colours are more difficult to get hold off in the sense that they often have to be ordered from abroad (usually the USA), but as you can order over the internet, you can usually do it all yourself.
We can’t post links to sleeve manufacturers, but try googling ‘lymphedivas’, ‘gottfried’, ‘juzo’. You may have to put ‘+ compression sleeve’ as well.
w x 3 dot stepup-speakout dot org is a new lymphoedema site with lots of good links to compression garment manufacturers, too.
Hope this helps - if you have trouble finding these sites, post again and I’ll pm you some links.
X
S
Hi S,
I have finally got to see a physio/lympho specialist after 6 months. It took some doing as there is no one in my town who is trained so I had to be referred to another area. I was measured and got a sleeve but it proved to be too tight so back I went for a larger one. I still think it is restrictive but I shall persevere for a while. I like the sound of the Venex Microlight so went on the Hadds web page but could not access the page I needed for more info. I can well understand why they will only send out after speaking to the physio as it would be too easy to buy the wrong size. How much lighter are the venex than the cotton ones?
E
thank you for this info! how much are the gloves and arm sleeves? i’m after some black ones to be honest.
my friend has a sewing machine and has offered to make some ‘covers’ for the sleeve so it doesn’t look as ‘cabbage patch kid’
Hi poannie…I was thinking of a ‘cover’ too if you have trouble getting an actual sleeve. (the website sounds good news) Any John Lewis near you should have quite a selection of materials…so you could choose a fabric that won’t be too hot to wear and you like the texture of…xx
I’ve had a chat with my friend (her fella has just bought her a new sewing machine) and she’s going to try and make me up a few different covers (I wnt a pinstripe one LOL) to see how I go with them… xxx
Hi Poannie
I have heard of people buying children’s tights and then making covers from those.
Also, on the american site (breastcancer.org), there is a lymphoedema forum with a thread about sleeves. A lady, with a remarkable talent for lateral thinking, has posted there with these suggestions for covering up sleeves.
I have no idea whether they work or are even suitable, but they could be worth a try as they are not expensive and seem to come in lots of colours. I know I can’t post the full links, so here goes with the cryptic versions…
http://w3 dot sliceoffashion dot com/index dot html
http://w3 dot hijabstoreonline dot com/index dot php?main_page=index&cPath=28
http://w3 dot al-muminat dot com/long-nylonlycra-sleeves-p-284 dot html
If anyone is interested in reading the whole thread, it is:
community.breastcancer.org/forum/64/topic/732230
X to all
S
well, i’ve got my sleeve and glove… slowing down my typing i can tell you. it made me cry actually, as i now ‘look’ like i’ve got something wrong with me…
Hi All
Emmbee, I’m so sorry - I read your post and then completely forgot to reply to it (chemo-brain, probably). Haddenhams sleeves are about 40%-50% lighter, I would say, which makes them much more comfortable to wear in summer and less bulky under clothing. For that reason, I think they can only go up to compression class II with them.
Poannie, I know how you must have felt - these b****y pig ugly things are so conspicuous - almost deliberately so, it seems - no wonder people try to wear them as little as possible! I hope you find a solution to your ‘cover’ problem. Do let us know.
I’ve stuck with long or three-quarter clothing myself (I feel the cold, even in summer, so it’s less of a trial than it might be. And it certainly makes the sleeves less noticeable.)
X to all
S
Hi S,
Thanks for the info. I will certainly speak to my specialist at my next appointment. I am having trouble finding sleeves to fit as if they are good on my arm they are squeezing my fingers together and I get pins and needles. If they fit my hand they are loose at the top of my arm. I am off to Gran Canaria on the 2nd Nov so will just have to wear the sleeve which does not crush the bones in my hand.
Sorry the chemo brain has not worn off yet but hope you are coming around from the treatment.
E
i am lucky enough to have a lymph nurse at the hospital, she has given me pink sleeves in the past! and also had blue ones on offer! They are Sigvaris make, but don’t know where she gets them from.
Marg
xx
Hi Marg, Emmbee, all
Marg…You lucky devil! Pink and blue sleeves on the Nash! Whatever next?
It would be interesting to know whether your nurse orders them direct from Sigvaris or not.
Emmbee
Do you have a separate sleeve and glove or the all-in-one arrangement? Sounds as tho’ you might need made-to-measure or perhaps a different brand would help. Sometimes a bit of skin glue (you can often order this from sleeve manufacturers or through a lymphoedema therapist) can help them stay up. Some types are more prone to rolling down than others - I used to find Medi sleeves did not stay up well, but there seem to be more available these days with silicon bands at the top which grip better than the older, elesticated ones.
I think some of these sleeve manufactueres can have QA issues. I took delivery of four Haddenhams sleeves recently and had to return two as the cuff at the wrist was too loose. I’ve also just returned a pair of Thuasne sleeves because one was the wrong size!
Doesn’t make me Mrs Popular, but if you’ve got to wear them every day, as I have, I want them right and a badly fitting sleeve can do more harm than not wearing one at all.
X to all
S
Hi S,
I have 2 mediven sleeves which fit well but they are not cotton and they make me itch to screaming point. The cotton ones are Haddenhams which are less itchy but don’t fit properly. One fits on the arm but crunches my fingers together too much. This is the first cotton one I tried and is small+ and long. I went back for a larger one which is medium but the length is only standard as there was not a long one in stock. I think that this is why it is loose at the top. All are ‘all in one’. My specialist is off sick at present so I can’t do much about it until I return from holiday. Having said that I really don’t know which one to wear, but being human I am plumping for the most comfortable one and hoping for the best.
E
Hi all
Emmbee, I’m sure you’re doing the right thing, too, by wearing what is most comfortable until you can get something else sorted out.
Know what you mean about Medi sleeves and itching - SO irritating. I used to find they rubbed all the skin off my elbows, too. Which was very worrying from an infection point of view.
Did a bit of googling today and here are some (suitably encrypted) links to American sites selling coloured sleeves…
w x 3 dot medicalstockingsonline dot com
w x 3 dot brightlifedirect dot com
There are Sigvaris sleeves on sale on these sites, but they only seem to be the beige ones. The Juzo ones come in lots of pretty colours, however.
Hope you have a lovely holiday, E. Where are you going?
X
S
Hi S,
Thanks for the info on the pretty sleeves.
I am going to Gran Canaria for two weeks. I cannot wait to get some sunshine as we in the north of England have missed out this year. I remember one nice week in June but that’s about it. The south have had lots of lovely weather as friends have moaned about their dry gardens. Ours have been waterlogged a lot. I waited until I had been on Herceptin for a while before being brave enough to book the holiday. In the meantime 2 friends had booked, then we booked, then 3 more friends booked and a week later increased that to 5 so, now there are 9 of us going to the same place. Good thing is that 2 of our friends are medics so I am feeling quite relaxed about it now.
I really don’t know what to do about wearing a sleeve. I will definitely wear it on the flight but probably not during the holiday. I have bought some P20 sunscreen which stops me burning but don’t know whether to cover up or not. Any ideas out there? I am off to the docs tomorrow to stock up on anti-biotics etc.
E
Hi E
Gran Canaria sounds lovely and at this time of the year - warm and sunny without being ferociously hot.
Heat can definitely aggravate lymphoedema, but it’s hard to wear anything as ugly and conspicuous as a sleeve in hot weather and summer clothes. If you could manage a few hours each day, it would be better than nothing, I imagine. Especially as you will be away for two weeks.
I would definitely slap on the sunscreen (30+ minimum is recommended, apparently), as sunburn would put a terrible load on your lymphatics.
Keeping your whole self as cool as possible is good, too. I find (because I live in SW France and it gets very hot here too in the summer) that a brimmed hat really does help in this respect.
As does keeping out of the sun in the hottest part of the day. Loose clothing is good, too; I’ve got a cotton kaftan that lets the air circulate around my body. Long sleeved baggy shirts and kaftan tops, too. All these things seem to increase my comfort and help my lymphoedema. If you’ve got trousers or shorts with pockets, these can be useful, as you might be able to put your hand in them and so take some of the weight off your arm.
And being in the water and swimming is really good for your arm, which you should also try to elevate if you’re not doing anything, or at least keep it supported.
Finally, a high fluid intake will help your lymphatic system to work as well as it can.
That’s all the tips cribbed out of my ‘lymphoedema bible’! Hope they’re of some use. You know your arm better than anyone, of course.
BTW, in case your GP is in two minds,this link gives advice on which anti-biotics should be prescribed:
lymphoedema.org/lsn/consensus_on_cellulitis_dec_06.pdf
All the best for now,
X
S
Hi S,
Thanks for going to all that trouble for me, you are a dear.
No problems with my GP. I now have a 2 week supply of Augmentin and Erythromycin if the A does not work. It did work before so I should not have a problem.
I don’t have any Caftan type tops but I have packed a couple of blouses. I will buy something in G C if I need to. If it is still very hot when I get there I will get Factor 30.
Have you ever cut the hand piece off a sleeve? I am very tempted as the one with the tight hand fits best on the arm.
Thanks again,
M xx
Hi there E (or is it M?)
You’re welcome!
I’ve never needed (touch wood) handpieces of any kind, as my hands have never swollen (well, some fingers of my right hand did for a bit on Taxotere, but that was all).
I think I tried cutting the bottom third off a sleeve a long time ago (to make it less conspicuous!!!lol), but I don’t recall it being that successful; it may even have made my lower arm swell more.
It might be different with a hand piece, tho’ - I’ve really no experience of wearing one myself, perhaps someone else can make a suggestion. However, I think I’d be more inclined to try skin glue to hold the other, looser sleeve up.
Bye for now
X
S
Hi S,
Sorry, Freudian slip, it’s E.
Okay, no one else has come up with anything so I will wear the loose sleeved one on the flight and see how I go. I will take the better fitting sleeved one with me and chop off the too tight hand piece. My hand is not swollen so I don’t need that bit. I won’t be able to cope with skin glue as I have fragile skin.
I did not find any caftan type blouses when I went looking today. I did find a very pretty white blouse which is loose and has loose sleeves. I can wear that over a t-shirt or skimpy top to protect my arm when it is very hot.
No 6 Herceptin over and done with today. A third of the way through so that is another goal reached.
Check your email.
E xx