Breast Cancer surgery - the gift that keeps on giving

@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

I refer to as my bionic arm - amuses small children!! 

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.

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. 

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?

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

There are also closed Australian Lymphoedema pages on Facebook:

• Lymphoedema Australia
• Living with Lymphoedema- Australia and New Zealand

Just thought of them

Hi, @Nadi. Sorry to hear you've developed lymphoedema.  Lymphoedema can occur any time after damage to the lymphatic system, even 10 or 15 years later. Only having  sentinal nodes removed reduces the risk, but doesn't eliminate it, unfortunately. I had neoadjuvant chemo,  incuding docetaxol,  a different taxane. My lymphoedema developed 6 weeks after my surgery, going in to my first sleeve the day that I started radiotherapy. Been in it ever since. 

I'm co-coordinator of a local lymphoedema support group in the ACT. We meet once a monthl, mostly on a Wednesday morning but 3 oror times a year we have evening catch ups. We are,  quite simply, a group who get together to support each other, and exchange ideas about how best to look  after ourselves, our skin, our garments. We have a FB presence, search Canberra Lymphies or pm me and I'll give you our email address. Also happy to catch up one to one if that helps.

Take care

Hi @Nadi, I'm so sorry that you've developed lymphodoema on top of everything else. I have been managing my lymphodoema now for a few years and I have to say when it was first picked up I was a mess, it really felt like the last straw. It's now something I accept but still really wish I didn't have to. I have it in my hand and arm and wear a compression sleeve almost continually now and see a specialist physio once a month for a massage and to use their pneumatic compression sleeve. Both of these things relieves the build up of fluid and tension in my arm, which can get really tight and sore. In between visits I do self-massage, elevate my arm as much as possible and do some arm exercises. Exercise, especially waterbased like @Zoffiel suggested, is also great and I need to try and do that more often. I do find the compression sleeve and glove very effective so hopefully that will help you too. Best wishes, Jane xx

One thing at a time, once you get your sleeve and glove you need a bit of time to get used to them. A good specialist will make sure the fit is right and then I hope the ache and the heaviness will be alleviated. I had a lot more nodes removed and taxol, but but no radiation. There's work being done on node transplants, but it's early days yet. Best wishes for feeling much better soon.