Lymphoedema and recurrence fears

Crumbs BC just keeps on giving!

mum2jj said:

Andij said:

Hmmmm what a shame you can't reply to someone's post under their post.  Bit odd. Anyway...

Thanks Melinda.  Yes do so try to take each day one at a time. Just gets tiring sometimes when things keep happening. But will carry on. :) x

Andi just wanted to show you how to reply to a post.  It's a bit bold looking as  you can see, but if you click on the quote underneath what you want to reply to it will appear like this and you can type your reply.  Paula xx

Ahhhhh thank yu:)

Karenhappyquilter said:

I started with a private physio then my gp referred me to the hospital clinic.  Now I see both, maybe excessive.  I keep the private physio because I assume sooner or later I won't be going to the Hospital, they are so busy.  I have found a good lymphatic massage therapist through the private physio.  

My lympodema isn't that bad but I it's hard to take at times.  It's so constant.  Plus knowing it's probably for life is draining.  At times I get pessimistic.  I would love to put the cancer behind me but this makes it a bit more difficult to do.  On the other hand there are ways to manage the condition so it's not all bad.  A cheerful kind positive physio is a great support I find.  It's a funny condition in that people who don't have it tend not to understand it.  Good,luck with it all. Winter is coming.

Karen

I might see both too I think Karen, but the private one less often perhaps.  Yes knowing it's probably for life is hard to come to terms with. Yes there are worse things in life, but this is hard. The all in one sleeve and glove is hot, it is restricting, can't type properly, play the piano, guitar, can't wash hands properly in the day etc etc.  It will get easier I guess, just feeling ticked off:(

Brenda5 said:

My arm and hand blew up while I was on chemo. I wore compression sleeve and gauntlet and started lymph draining massage. Look on youtube and there are some good ones you can follow on there. Heat is the worst as it makes my arm swell very quickly. I try not to do much with that arm while its hot weather. I have no nodes left under the arm so I imagine I will have to keep the massages up for life long. Small price to pay for getting rid of cancer.

Yes I am finding the heat really upsets it quite quickly:(

My arm and hand blew up while I was on chemo. I wore compression sleeve and gauntlet and started lymph draining massage. Look on youtube and there are some good ones you can follow on there. Heat is the worst as it makes my arm swell very quickly. I try not to do much with that arm while its hot weather. I have no nodes left under the arm so I imagine I will have to keep the massages up for life long. Small price to pay for getting rid of cancer.

Thank you so much ladies for your replies. Very helpful.  

I started with a private physio then my gp referred me to the hospital clinic.  Now I see both, maybe excessive.  I keep the private physio because I assume sooner or later I won't be going to the Hospital, they are so busy.  I have found a good lymphatic massage therapist through the private physio.  

My lympodema isn't that bad but I it's hard to take at times.  It's so constant.  Plus knowing it's probably for life is draining.  At times I get pessimistic.  I would love to put the cancer behind me but this makes it a bit more difficult to do.  On the other hand there are ways to manage the condition so it's not all bad.  A cheerful kind positive physio is a great support I find.  It's a funny condition in that people who don't have it tend not to understand it.  Good,luck with it all. Winter is coming.

Karen

LITHGOW1950 said:

Damn! Better get the soreness under my arm checked. Can you tell me is it best to see my GP or a physio? 

Hi there, just wanted to jump in with my wealth of lymphedema experience (my own ;)).  GP's or even surgeons are often not up to date with lymphedema sad as that may sound. However they may be able to refer you on.   The best person to see in a lymphedema trained physio or OT.  Depending where  you had treatment some hospitals have these attached to their cancer units.  Here is a great link to Australian Lymphology Association. Chek it out, there is a link to help find a therapist.  Beware there are some untrained people out there claiming they know how to do massages etc.  Good luck.
Paula xxx

Andij said:

Hmmmm what a shame you can't reply to someone's post under their post.  Bit odd. Anyway...

Thanks Melinda.  Yes do so try to take each day one at a time. Just gets tiring sometimes when things keep happening. But will carry on. :) x

Andi just wanted to show you how to reply to a post.  It's a bit bold looking as  you can see, but if you click on the quote underneath what you want to reply to it will appear like this and you can type your reply.  Paula xx

I totally get  you.  I got lymphedema about 2 months after a recurrence.  believe it or not it  hit me harder than the cancer and I know that seems weird.  I think it is the permanency of it all.  I was devastated.  Having said that it was 5 years ago now and you will get to a point where it gets more under control.  It is preferable to do daily lymphatic massage which I am sure that whoever bandaged you would have shown you how.  If you  do that and wear your garments as much as you can things will improve.  I was at the stage where I was only wearing mine for part of the day and I could go out to certain occasions without them. I didn't need to wear it at work all the time as I was in aircon.  That was great as I am a nurse and it is really difficult working with it.   it did  however flare up again last year, but as I knew what to do, I am getting it well and truly under control again.  I so know how you are feeling right now, but hang in there and it does get better.
Paula xxx