Hi Jane
Re; the sleeves
Nonny (hope you don’t mind me copying it and reposting it here, Nonny) wrote this a little while on another lymphoedema thread:
‘Just thought I’d jump in on this one. I had a bilateral mastectomy and full amillary clearance on the right side followed by radiotherapy on that side including the axilla. I asked my Breast Care Nurse about lymphoedema and she gave me the name ‘Activa Support’ which I looked up on the Internet. I had read advice about wearing a support sleeve when flying and when doing activities such as ironing, lifting and gardening. Having had Chemotherapy I was already at a higher risk of DVT so always wore travel socks as I do a lot of flying (internal as well as Europe, not long haul) I thought it would be a good idea to get fitted. I saw my GP and he agreed with me and referred me to our Lymphoedema Clinic where I was told they did not supply sleeves as a preventative measure, you have to wait until you have already developed lymphoedema! So I got measured (you can download the instructions of how to take measurements and the sizes and types of sleeves from Activa website) and purchased my own sleeve from Lloyds Chemist, £28.68 I think it was. I don’t want lymphoedema and will do all I can to prevent it.
Hope this will help some of you who are wondering what they can do for themselves’.
(Might help - may depend on what size and compression class you need, of course).
Also, a good private lymphoedema therapist can measure you and order sleeves for you and you should have a resonable choice of brands that way.
There is also mail order via the internet. You’ll have to google, of course, but Juzo might be a good place to start (lymphdevas, too - altho they tend to specialise in colured sleeves). Also, the new lymphoedema website ‘stepup-speakout’ dot org has details of sleeve manufacturers.
As for MLD during chemo, I’ve just finished some. However, I have lymphoedema in both arms and the therapist was working on the other side. I did clear it with oncologists first. I think it is reasonable for therapists/nurses to be cautious, but surely a letter from your oncologist would suffice to put their concerns to rest. It sounds as tho’ private treatment could be better (altho you would still need the letter, I reckon) - quicker access, longer treatment sessions and possibly a more satisfactory relationship with whoever treats you. MLD is such a personal thing that you definitely have to get on with whoever is delivering it.
By the way, I concur about the attitude of NHS lymphoedema services to treatment. I found that even with the slightest question mark over my health, you couldn’t see them for dust sometimes.
If I think of anything else, I will post again.
Best wishes
X
S