Lymphoedema and recurrence fears

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Comments

  • Afraser
    Afraser Member Posts: 4,354
    Those are fantastic, I love patterned hose, a patterned arm is even better! Will discuss with my therapist next appt. Many thanks!
  • Andij
    Andij Member Posts: 115

    mum2jj said:

    I hear you. I live in the tropics so you can imagine my response to the wearing of garments in the heat. I am lucky and can often wear a custom made one that goes to my elbow. There are times when I have to wear the long, but have two piece. Here is my tip. Get yourself some Hercules tough trial nitrile disposable gloves , or similar, gloves are blue, very flexible and a bit bigger so will slip over your gloves. I get them in Woolies. I have one permanently by my kitchen sink, one in bathroom etc. I wear them over my glove when cooking, washing up etc. can wash your hands (well the other one that got dirty) in them. They are a godsend and not nearly as heavy as rubber gloves. I reuse them in the kitchen. 
    It is nice to see lymphedema being discussed on here. It is often the forgotten side effect of this rotten diseas and one that nearly tipped me over the edge. Hang in there it does get better. 
    Paula xxxx

    Thank you for the gloves hint Paula. I have tried a couple and keep ripping the top of them off trying to get them on - rather annoying lol. OT Physio said today to give myself a break, as I am still in the adjustment phase. I will get better I know. Just have to accept it.
    Andi xo
  • Andij
    Andij Member Posts: 115

    Share said:

    Hi Ladies, thought I would jump in here - I am a "13 years after the fact" !  Yes @Afraser - you are right !

    I had a mastectomy with auxillary node clearance in 2003 - never any problems with lymphedema. Vigilantly did my exercises to ensure that I would have complete use of my arm - had 15 lymph nodes removed.

    Had my secondary bc diagnosis in 2015.

    Lymphedema raised it's ugly head about 4 weeks ago.

    Since then I have been seen a lymphedema massage physio for some sessions and good exercises along with a fitted compression sleeve.

    After getting my head around the secondary bc diagnosis and radiotherapy following bone pain and a few niggling issues, things had just started to settle down - now this !!!

    Hi @Andij- so frustrating given that you think you have some control back !

    Go onto the Australian lymphedema therapy site and check on location for therapists. That's where I found mine or perhaps check with your GP and or physio.

    All the best.

    Regards

    Sheryl


    So very sorry to hear of your return Sheryl. Our biggest fear which for you has been realised:( Seems to be when it hits you, just when you think you are getting the hang of this new normal doesn't it. I do have a private lymphoedema therapist I was going to but even with a GP's Health Care plan it was costing $55 a visit plus is right out the other side of Brisbane, so ended up doing therapy  now through the public system. 
    I so hope you are coping okay and that everything will be alright for you  xox
  • Andij
    Andij Member Posts: 115

    primek said:

    I've got a sleeve through lymphedivas. It it very light. Easy to put on and has the separate hand piece. I am  lucky enough not to need it daily at this time.   Just thought I would share. 

    https://www.lymphedivas.com/en/shop

    Thank you. down the track I may well give them a try. I love the look of their sleeves. For now I will just do what I am told and get this hopefully under control xo
  • primek
    primek Member Posts: 5,392
    My lymphodema physio measured me up and referred me to them. 
  • Jane221
    Jane221 Member Posts: 1,193
    I like the Lymphediva products and am hoping it might be an option for me once things are back under control. :)

    Just wondering if anyone has had experience with the Caresia Night sleeve (which looks a bit like a huge oven glove / sleeping bag for your arm with special inserts that provide pressure to stimulate fluid)? As my skin didn't react well to the previous bandaging I'm currently trialling this product with my physio to help reduce the swelling. It is pretty comfy to wear at night (though still quite hot), but seems to be helping - but early days yet. Am keeping my fingers crossed (when they're not too swollen ;) ) that this will help get the measurements right down. Am eternally grateful to my physio that she is determined to find what will work best for me and seek out different solutions.

    Like @mum2jj I'm pleased that there is a conversation happening about this issue as it is something those of us unlucky to develop it unfortunately need to manage constantly and there seems to be little understanding of the condition, even in some medical quarters. 
  • iserbrown
    iserbrown Member Posts: 5,543
    Great conversation that is of benefit to all of us
  • primek
    primek Member Posts: 5,392
    Wouldn't it be good if that special night glove had inserts for cooler packs 
  • socoda
    socoda Member Posts: 1,767
  • Jane221
    Jane221 Member Posts: 1,193

    primek said:

    Wouldn't it be good if that special night glove had inserts for cooler packs 

    Yes! That would be brilliant!!
  • mum2jj
    mum2jj Member Posts: 4,327

    primek said:

    I've got a sleeve through lymphedivas. It it very light. Easy to put on and has the separate hand piece. I am  lucky enough not to need it daily at this time.   Just thought I would share. 

    https://www.lymphedivas.com/en/shop

    They look awesome, just worry because I need custom made garments that if I get the measures wrong they may not suit.
    Paula x
  • mum2jj
    mum2jj Member Posts: 4,327
    Oh, I just read your physio measured you, that's awesome.  They  have fantastic designs :)
    Paula :)
  • mimsi
    mimsi Member Posts: 9
    :) Exercise in water also helps as there is a natural compression of water on the skin that combined with exercise helps with pushing the lymph fluid up out of the arm. Problem is getting firm compression garment back on if the skin is damp.
    Elevating the arm whenever at rest - the higher the better helps with drainage too.
  • primek
    primek Member Posts: 5,392
    There are also different compressions available in the lymphedivas range. I have also found swimming or even walking and moving my arms in the water help a lot.
  • Ne
    Ne Member Posts: 336
    I totally hear you.  I had my surgery in 2015 and 22 lymphnodes removed (was a full lymph clearance).  I am 41 and in constant fear for lymphoedema.  I go to my lymph physio every 3 months to measure my L dex and it drives me insane the constant  fear when I just feel slightly swollen etc.  I am so sorry that you have to go through this lovely.  I can only imagine how tough this must be and as you say being a constant reminder.  I hope it settles down soon and that you respond well to treatment.  We are all here for you.