Forum Discussion
Battle Undies
I joined this forum in 2010 but didn't really participate until my recurrence in 2016.
There has been some great stuff happening here in the last couple of years--support and humour, the sharing of resources, hint, tips and experiences. There have been occasions where forum members have joined forces to advocate against changes they disagreed with. BCNA initiated some consultation to discuss the way the forum works and the function of the moderators.
I've had a couple of robust discussions with the mods via personal messages, which I think is the respectful way to conduct those dialogs. Each to their own, I suppose. I wouldn't have their job for quids, walking the line between fair and reasonable and trying to shepherd a couple of hundred distressed souls through harrowing experiences is not an enviable task.
I'm seeing some anger and frustration with the forum lately which I think could be better directed. But where?
I'm at the stage where I am interested in resuming some of my advocacy activities. Advocacy was something that I found very satisfying in the past, but I think I needed to be a couple of years out of diagnosis, again, to be able to engage without adding another burden to an already stressful situation.
BCNA does have opportunities for members to participate in their advocacy objectives, but there are many other ways to use your personal story to change the system. I can see people here with great skills and experience but along with that can come anger and frustration: biting your fellow travelers, though tempting on occasions, is probably wasting energy. I'm fairly pissed off about a number of things related to BC V2, but how do I channel that?
Charity, as they say, begins at home. I'll be avoiding getting involved with any scraps and squabble I see here, but what I have been doing is asking my breast care nurses what they think is the most likely point of leverage to improve services. They are telling me the lack of funding for local lymphedema services is something that is could be changed by some consumer pressure. I've now got the contact details for the hospital Board and some inside running on how to contact the relevant ministers and what part state and federal funding and local allocation of resources plays in this dilemma
Ladies, and gents, if you have some energy that needs to be expended maybe that's a better reason to don the battle undies.
Marg xx
35 Replies
- Trying to remember what he told us last year - think was that the water provided resistance to encourage lymph drainage - there might be some of his research online - I will try to find the handouts he gave us at Encore.
- An interesting comment @Afraser as Professor Neil Piller here is a strong advocate of hydrotherapy for lymphoedema patients.
- Re lymphoedema, my therapist is clear that having my arm in warm/hot water for any length of time is not a good idea. I am therefore noticeable at spas as the woman who is apparently wanting to leave the room, with my left arm raised above the water line!! Same with air temperature - current weather in Melbourne will have little effect on my arm, above 26 or so encourages fluid to hang around. One of the problems people encounter in humid climes is trying to get a compression garment on over a sticky warm body part, but unfortunately that's the time you need it most.
- @Romla
No worries! It is a frustration when a program has been operating and is no longer and even moreso, as in your example, they rely on volunteers
Years ago I was under a Physio, after spinal surgery. She ran a program in a Hydrotherapy setting at a private school pool - costs drives everything doesn't it!
Take care - Thanks @iserbrown for the Victorian details - am unaware of similar programs apart from a Encore.
The SA Encore program was halved when Flinders Medical Centre closed their pool and the Y was unable to find a low cost alternative- it was pool hire that was major budget constraint as volunteers run the program. - @Zoffiel
I'm not trying to tell you how to suck eggs but I noticed in this thread that your focus will be around Lymphedema
I have come across this website and I thought, if you haven't found it already, that it maybe a starting point - interesting to see if they understand it from a patient point of view or are they more practitioner oriented
http://www.lymphoedema.org.au/about-lymphoedema/faqs/
Good luck with the project! - https://www.epworth.org.au/Our-Services/rehabilitation/Documents/Rehab_Directory_web_2015.pdf
Some of the major hospitals in Victoria run rehab for all ailments - page 19 of the above is the Enhance program specific for Breast Cancer patients.
As to YWCA Encore - it is not and has not been available for a couple of years that I know of in Victoria. All these programs are subject to Government funding
At present http://www.exmedcancer.org.au/ is running in Victoria and is funded. The continuation of this will depend on results and the possibility of being extended to other States around Australia - It is all about Government funding
- Just out of interest I did some research and discovered in country Victoria these towns have hydrotherapy at public hospitals-
Ballarat , Albury ,Barwon , Benalla , Bendigo, Mildura ,Leongatha ,And Wangaratta. Some are major regional centres - wonder if the Victorian YWCA might train a local to provide Encore if your state govt provided access to a pool ?
PS Maybe a Melburnian might like to look at the metro hospitals. I can’t believe they are fully utilised .
Sorry but why does Victoria do no Encore at all ?
