Hi, after an auxiliary clearance on my right dominant side on May 1st I first developed symptoms of lymphoedema on 21st August. After examinations and scans it was confirmed on 27th August and by 3rd September I was being measured and fitted for a sleeve! At this point I felt I was being taken care of very well. They decided on what sleeve was best for my individual condition and this was to be a full sleeve with mitten attached class 2. I asked about a sleeve and gauntlet and was told this would not be ideal for my lymphoedema, so ok I thought you are the experts! After about a week two sleeves arrive in the post both the same, class 2. I try it on and it's all baggy round the hand! I keep it on for two hours thinking I might be doing the right thing but then my hand starts to swell up so take it off.
Weekend so can't speak to anyone till Monday. Monday comes I phone up, leave a message. The sleeves that were decided upon in clinic it turns out wasn't available with a mitten attached so she ordered what she thought was nearest thing and said I did right to take it off and she would send something else out!
A couple of days later four sleeves arrive in the post with a note, try these don't worry about colour etc just try for correct size! So out of the four only one fits but that's class one!
As instructed I get back in touch saying which one fits and am advised to where it over the weekend to see how it feels even though it is a class one! ( this is a different nurse) Again I get back in touch to say I've got on ok with the sleeve but am still having swelling particularly in the hand and that the thumb was too long so much so it was over my thumb. It was agreed that another sleeve the same but in class two would be sent out to see if the extra compression would help.
At this point I felt happy as in the beginning I was told it needed to be class two anyway.
So yesterday after arriving back home post had arrived, my arm and particularly my hand had ballooned and felt very achy at this point so I was feeling glad the package had arrived. On opening the package I was surprised to find two sleeves, both class one without mittens attached, one without a grip top and a full glove, which is not what was agreed this is by a nurse who has not seen me and the first one said I needed all in one! One says one thing the other is sending out something else! I feel confused and emotional and don't know who I should trust I'm so close to tears and not due to go back to clinic till 19th oct. Why is one thing discussed and agreed on the phone then you get something totally different! Why should it be so difficult to follow! Are there no guidelines? Why would they both work at the same place and both be giving conflicting advice? They are supposed to be the experts you put your trust in them, who do you believe!