Well last year i had full axillary clearance 6 nodes positive out of 13. Chemo FECT plus radiotherapy. Survived all that and then wham bam - lymphoedema!
What a mess. In My county only one unit right at the edge of the county with two nurses who to be quite honest are worse than useless. It seems there are no NHS resources in Lymphoedema. Its a chronic condition underfunded with little research base.Because of this no emphasis is put on MLD and all into fitting of compression sleeves which in some cases positively increased my lymphoedema and pushed it into my hand. Everything they they tried including Compression bandaging made things worse. Worse, every time i rang for advice or reassurance i got the ‘what have you been doing line’ blaming me.
The final cure all, compression bandaging made things worse. My lower arm and hand not only increased in size, it looked awful. ?I could have cried (no i did cry).
I have seen a private MLD specialist three times now and the words the positivity the exercises given to me the pro active nature of her treatment is such a difference to the shrug shoulders blame the patient attitude of the nurses in the NHS.
My arm is now 100 times better thankyou. But what is going on? It shouldn’t be like this. Lymphoedema is horrible a reminder of our diagnosis a further restriction on life when you just want to get on and live. It shouldn’t be left to the private sector to be the most proactive and up to date. ??
Reading this felt like my own story. My hand was the worst affected area and all compression garments dI’d is make it worse!! Now wearing kinesio tape, glove and sleeve does nothing to help but that seems to be the extent to their treatment. Haven’t looked into MLD yet, being off work I don’t think it’s an extra cost I can afford right now. This hot weather doesn’t help either. This was all I dreaded when faced with the choice to have full node clearance last year ?
Mooney, sorry to hear you didn’t have much support from your lymphoedema team. I have been lucky to have had a very supportive team of lymphoedema nurses that have kept me sane for the past 5 years. After trying a variety of treatments for breast lymphoedema I have resorted to a mastectomy after seeking advice from a lymphoedema specialist. It is definitely an under resourced area and one in which it is difficult to get seen by a specialist because there aren’t many of them! The effects of lymphoedema are devastating and a daily reminder of cancer treatment making it very difficult to move on. Best wishes Flossie x
Hi I also have Lymphoedema in my hand. Received my sleeve and glove yesterday. I am thinking though surely it would make more sense just to wear the glove so the fluid drains into my arm? Or is the sleeve necessary too? Yesterday I wore them for a few hours but my hand looked more swollen when I took the glove off. Confused…x