Breast lymphoedema

No worries at all LucyE! Glad the information is helpful :)

That's great info @Lisa_BCNA, thank you. 

Hi Bravo, it's Lisa from the Policy Team. It is really good to hear that you have an upcoming appointment at a lymphoedema clinic. I just wanted to let you know that we have a lymphoedema fact sheet which you can download or order here.

The Australasian Lymphology Association (ALA) is also a good source of information about lymphoedema. They have a public register of lymphoedema practitioners across Australia on their website here. They also have a list of lymphoedema associations and support networks in the various states and territories which you can find here. The Westmead Breast Cancer Institute also has a good fact sheet about lymphoedema, which you can download here.

Also, please do not hesitate to get in touch with BCNA's Member Services Team on 1800 500 258 if there is anything we can do to help.

Good point @primek. It's important to do it correctly from the start. 

I guess the only other tip is the massage is very gentle. ..like patting a cat, or gentle stroking ...not a deep tissue massage.

@Bravo great to hear you've found a clip with the slides, would be much easier to follow.
I have also found a few people to be patronising, but must have been lovely. When I went to radiotherapy for the first time. It was after work, I'd recently finished chemo and one of the women working three spoke to me in such a partronising way that I felt like I was 5. First, she made me feel bad about being on my own and then spoke to me in a sing songy way - drove me nuts. I said to her "You must say that a lot" and she spoke to me normally after that. I think we do have to find the best way of treating lymphoedema. It's important to do the massage properly though. @Afraser I look forward to the day that lymphoedema is recognised as the debilitating condition it is. 

A trained lymphoedema therapist is highly unlikely to do this -  that's why I ask people to support any campaigns to get more research and knowledge. I am not much affected by mine but many people find is distressing and limiting. And we don't have a cure yet - wish it would "just go away"!  

I have found another talk he gave in a Eastern European country. The sound was patchy but they showed the slides. I've been able to locate a few videos of massage techniques for breast lymphoedema which, coupled with the professor's information, gives me a better idea of what's going on.
It makes me wonder if our medical specialists are now expecting patients to go out and find the answers for themselves. There is still a lot of that patronising, patting on my hand and saying 'it's okay dear, it will all resolve itself soon' attitude. (Young female nurses are the best at this.) On some days it's nice to believe someone else has control of the situation, to toddle off home and just follow their advice. Then there are the more common days when I need to be the intelligent, informed patient who peppers the doctor with questions,then goes home and does my own research.
BTW The reception desk people are also annoyingly patronising. I had to remind one of them that I was only 60, still had all my marbles, and could read. I restrained myself from showing her my fantastic left hook!

I agree @Bravo, that annoyed me too. Good to hear you found it interesting. I like his ideas about deep breathing. 

Lucy E the video sounded interesting but they weren't showing the slide show that he was speaking about. I couldn't follow it, which was a pity.