Once again let me add "hear! hear! to Elinda's response.
It is worth noting that no matter what bc-lymphoedema-related forum you read, many of the comments are the same: a sort of bewildered uncertainty combined with a strong feeling of a lack of support and knowledge coming from well-informed experts. BCC and Haven seem much the same, a lot of REALLY good and practical information about preventing lymphoedema, explaining why you might get lymphoedema, excercises, care tips. There seems to be a lot of help right up to the point where you are diagnosed with lymphoedema, and after that it all gets a little fuzzy and out of focus. I know that "everybody's different" but that's true with BC too, and it hasn't stopped me from feeling like there's a whole support network of experts to help me--to answer questions I don't even know I have. LSN is great too, and maybe they are who we should be looking toward, but their remit is so much broader--lots of primary and leg le people as well, and they too don't seem to offer any practical hands-on, in-person advice. I don't feel like there is anything like what we've started talking about here.
Anyway, I also agree with Elinda that this isn't a criticism of BCC--it's just a, oh, maybe request is the word, a request for you to consider a 'lymphoedema-sufferers' course. In the same way that the information about breast awareness and what it means to have bc is quite different for a woman before and a woman after diagnosis, or why the secondary bc women often feel that the primary bc women don't quite get it, I feel like women who have lymphoedema have a list of needs, concerns and questions that could be addressed in a specialised group session. From how to do sld to how to cope with the day-to-day trials. And as much as I appreciate the peer-to-peer support I get on here, it would be amazing to have someone who really, really knew what they were talking about talk to us.
I know money's short for classes, so maybe it's not even possible, but if you're sitting about thinking "is there anything else we could be doing?", this might fit the bill.
Quail xxx
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