andie, entrepreneurs need energy & my energy pot is empty
maybe we could start a campaign for ld clinics though - although i wouldn't hold my breath in the current nhs climate
& margaret, sorry your wife moved away - can't she pop back & do wifely things every now & then? (!!)
you can always nip over to the lesbians & bisexual women's section & start a 'where's my wife gone? she was here a minute ago' rant where you'll get lots of sympathy / empathy as well as from the ld gang
(edited for huge number of typos!!)
norberte, obviously a wife is what one needs. I used to have one of them but she works in another town now.
I must say the three weeks I spent at a lymph clinic certainly showed me how well off I am. I only have a problem with breast and trunk. There were women there with dreadfully swollen arms who'd been going regularly for years and years. And 20-year-olds with lipoedema who were in wheelchairs until treated for six weeks. Or women who have to put on thigh-length compression stockings every morning.
It wasn't as luxurious as I would have liked.
Funny how seeing other people suffering more didn't stop me complaining!
You were looking for a job to stretch the current income. How about being an entrepeneur(SP?) and setting up the afore mentioned LD camp for us
it is ridiculous, isn't it - getting clean, fed, drugged, bits that need a dressing dressed, garments wrestled on, clothed & shoes on takes all day so it's time to start taking everything off again
i'm sticking with getting clean & fresh jim-jams as my jobs at the moment, & eating whatever t'wife conjures up when she comes home from work & falls asleeep in the kitchen (& tonight's menu is singed arm with soggy greens - yumm!)
wouldn't it be nice if they had ld camps here (luxury spa type, not tents type) - nice bit of hydro, some mld, all the garments in the world to try (& all available on script when you get home), fluffy white robes with extra-large arm holes .....
I'm sorry you got cellulitis, norberte. I got that in my leg last July, had no idea what it was as I had no temperature, and I've had to have MLD for legs and compression stockings in addition to the bc breast MLD ever since. And go through the doctor saying 'you've neglected your lymphedema for several years' etc. But I am hoping the leg is more or less better now. I am pretty sure the Tamoxifen has a slightly swelling effect, but I had such trouble with Arimidex I don't want to go back to it.
Thanks for the tip re e-Bay - depends on postage to Germany though. I have bright blue tape. I got it after I spent 3 weeks in a lymph clinic in the Black Forest (long story). Must get back to using it. I have actually seen a compression garment that would work, but not sure if I want to wear one. Putting the spaghetti foam in the bra is much the easiest. Keen though I am on the idea of kinesiotape, once I've cleaned out my CPAP device, put on my compression stockings and measured my blood glucose, I seem to have lost the will to add it to the list.
yes, alise, that's exactly what i meant! thanks elinda
margaret, i get my kt tape on ebay, ebay shop called urban medical - bloke's v friendly & if the size you want isn't listed it's worth contacting him cos he's v helpful
& you can have bright blue one side & bright orange the other if the fancy takes you!
my skin's pretty greasy too - when i'm ktaping i find it is worth rubbing it all when you've applied it, to warm it up & make the glue more gluey .. a well-timed juicy hot flush always helps - & if a bit detaches i tend to patch it with a short new strip rather than replace the whole thing
& of course it's cheaper to have an infection & leave the kt tape in the cupboard - amazing how long it lasts!
i think i may have to bite the bullet & pay for some private mld when my infection's gone - considering i had double mx no recon, my cleavage is getting a bit alarming
Alise - re stimulating the lymph system and your worry about spreading cancer. Your body is constantly circulating lymph and blood around your body - if it didn't you wouldn't be alive. Think about what stimulates the lymph too - exercise, hot baths or showers for example. The message is that exercise is a good thing and isn't restricted in anyway following a cancer diagnosis.
take care, Elinda x
norberte, yes, I forgot to mention kinesiotaping - have got some. But it doesn't last very long as I have greasy skin. Theoretically it stays on when I'm swimming, but I think it stays on longer for other people.
have you tried kinesiotaping? it encourages the lymph to move towards nodes that work, so even if you don't manage to get any sld done there's a bit of treatment going on
alise, sorry you're not feeling any different yet but it's worth persevering - i didn't really start feeling the benefits till the 2nd week but when it kicks in it's great to have the lymph drained & gone
& if you did have any stray ca cells knocking around, they wouldn't need to wait for mld to move around - always worth getting reassurance from your mld therapist, but i'd try not to worry (if that doesn't sound stupid - i guess you are trying already)
one of the annoying things about the cellulitis is stopping all the lymph-moving stuff - it's pooling merrily all over the place which is really f***ing annoying
tsk, i dunno
off for more drugs & snooze, night all
I have lymphoedema in the breast. I suspect the MLD effect is more obvious in the arm. I had fibrosis in my breast as it was not treated for about 9 months after OP (I realize the lymphoedema may come later). After about two years' treatment, it has stopped being hard. I had a break for two months before Christmas and eventually the breast started swelling and itching again. So I have decided I need to have MLD but not every week, or it will get worse again. I wouldn't say that the appearance is better after a single session, or at all, though. For me, the effect of MLD is more preventing it getting worse, because if I get fibrosis again, I am likely to get cellulitis and eventually to need more MLD.
I sometimes put some stuff called spaghetti foam in my bra, which gives a slight massage. I try to give minimum self-drainage before I get up every morning. I am told to bandage my breasts, but can't be bothered. I hate being dependent on these measures!
It most definitely does work especially when in conjunction with bandaging. As my arm had risen to 69% in volume I was fortunate to receive approval for a course of treatment from my health authority. During the past three weeks I have received daily bandaging and MLD and the reduction has been magic. Now there is little difference between each arm.
I was very very lucky not to have had cellulitis given the severity of my arm which had become fibrotic ie the tissues had hardened.
Without expert help lymphoedema worsens and is unfortunately a chronic condition which needs very careful management.
I will of course have to wear a sleeve but now intend to have MLD regularly in order hopefully to keep it better controlled.
When I was first dx with bc I was unfortunate to see someone with extremely severe lymphoedema. Not a pretty sight.
You may think I am alarmist. But lymphoedema is a serious condition and often treated frivolously by the NHS who have little help for it other than the supply of sleeves which are off the shelf and do not fit the individual.
I am always happy to give help to others.
I have mild lymphoedema in my arm and breast and for me the MLD I have every 4 or 5 weeks or so definitely makes a difference. I have to pay for it privately as not available locally on NHS and believe me if I thought I was wasting my money I would stop immediately. I also wear a compression sleeve most of the time and fortunately the LD is u der control at the moment.
I am 7 years post dx and mx and developed lymphoedema last year i find the mesage helps as does compression sleeve just be patient. I too worry about cancer cells but to be honest any left would have done something by now
I am a 'newbie' to the 'joys' of lymphoedema I'm sure someone with more experience than I will be along soon.
From what I have been told though, it can take weeks for some of the drainage techniques to start working - so take heart! As for it dispersing cancer cells - I believe you are advised against it during active treatment, but you sound like you are well past that,
After a years wait I have finally got a course of MLD for breast lymphoedema. I have had 2 out of 8 sessions and can honestly say it looks no different!! It's a lot of faffing about getting there and I wondered if anyone who had had it actually saw a big differece?
Also I know thi sis mad but although I am 7 years post diagnosis I keep thinking what if there is a bit of cancer lurking and now I am stimulating my lymphatic system to send it all round my body???!!! Mad I know but I cant help it?
Love to all