Home Now what? The highs and lows of survivorship

Breast Cancer surgery - the gift that keeps on giving



  • lrb_03lrb_03 Member Posts: 1,205
    There are also closed Australian Lymphoedema pages on Facebook:
    • Lymphoedema Australia
    • Living with Lymphoedema- Australia and New Zealand
    Just thought of them
  • mum2jjmum2jj Member Posts: 4,074
    Bugger, yes I too got dealt that card and weirdly I found it much harder to cope with than everything else I had thrown at me. 
    Probably because the surgery and treatment were a means to an end. This seemed to be forever. I went through a period of bandaging for 6 weeks. My hand was a real problem and took lots of work, my poor fingers were like sausages. However many years later and it is much better and well under control. I wear a garment over my hand and lower part of my arm most days and for majority of the day. My garments are custom made as the off the shelf ones were not helping. As I work as a nurse I need to wash my hands all the time, I also have a long sleeve with a separate glove (which spends most of my shift in my pocket ). I self massage every day without fail. Some days longer than others. If I have a special occasion I leave the garments at home. It’s just part of me now and I try not to dwell on it. My lymphedema is really good now, but if I didn’t do what I do it would flare up again. It does get better with good management. 
    Hang in there.
    paula xxx
  • NadiNadi Member Posts: 611
    Hi @Irb_03 That sounds great! I received my sleeve and glove yesterday from my lymphodema specialist in Kingston. So glad they did a lot of measurements and I had a LDEX (?) done so we can monitor the level of swelling. I also had a lymphatic massage as it has also pooled along the right side of my chest beneath my axilla. I'll have a massage every week for six weeks then we will review. The sleeve and glove are more comfortable than I had thought. But the biggest challenge were the comments from people at work. Without the sleeve no one knows that I had breast cancer. The sleeve is a constant reminder.

    Quick question, how often do I wash the sleeve and glove? Do people buy more than one if they are wearing them everyday? Why are they so ugly?

  • AfraserAfraser MelbourneMember Posts: 3,070
    They aren't beautiful but do the job. You can get coloured ones (patterns!) but the weight and pressure may not be right for you. And they are even more obvious! Wash the sleeve every two or three days but you may have to decide how often you need to wash the glove, depends what you are doing, it can get grubby. Towel dry. I have never used a tumble dryer but have used a closet dryer. Dries easily overnight in summer, needs help in winter. You can buy more of course, but it's expensive and not worth doing until your lymphoedema has settled a bit and you know you are not going to change garments for a while. Good luck. 
  • AllyJayAllyJay Member Posts: 642
    How about covering the ugly ones with something like a knitted gauntlet or wrist warmers (in winter)? I realise long sleeves can be worn, but the wrist and hand still show.
  • AfraserAfraser MelbourneMember Posts: 3,070
    I refer to as my bionic arm - amuses small children!! 
  • lrb_03lrb_03 Member Posts: 1,205
    @Nadi, the sleeve is a constant reminder, and an obvious clue to those around you. Because mine started so early, I kind of don't know any different. I wash my sleeve every day, as Liz recommended from the start. Liz, and the manufacturer recommendations would suggest this will extend the life of your garment. It will also maintain the compression in the garment, especially in this crucial,  possibly less stable period of lymphoedema.  
    I hand wash my garments, roll  in a towel and spin  off in the washing machine. It's pretty rare that it doesn't dry overnight. This time of year in our climate can be the the hardest time for drying.

    As @Afraser says, give it time before you think about whether you need more than one on the go at a time. Probably 18 months ago, i decided that I wanted to have 2 on the go, so I ordered a new one about 3 months after the last one. I now probably order 3 sets a year, to keep them overlapping, so I've always got 2 on the go.  

    I'm about 3 & 1/2 years in to life with lymphoedema. I have days where I accept it, and days where I resent it, and the changes it wrought in my life. As @mum2jj said, in some ways it was harder to cope with than tne cancer diagnosis itself, in a different way. 

    Not that it's a total solution, but for a bit of fun, you can buy "stocking" sleeves, that imitate sleeve tattoos that you could wear over your sleeve.

    Take care

    L x
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