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Zoffiel's avatar
Zoffiel
Member
7 years ago

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


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  • kmakm's avatar
    kmakm
    Member
    7 years ago
    @Romla @Zoffiel All the metropolitan Melbourne pools that I have visited in the last decade have hydrotherapy pools (not an extensive survey by any means, but quite a few).
  • Afraser's avatar
    Afraser
    Member
    7 years ago
    Hooray @zoffiel. There are a number of issues with lymphoedema. It gets dropped off a lot of research questions so I doubt if the data is either clear or helpful. For most of us it's for life, as any real "cure" for developed lymphoedema is not on the horizon. Lymph transplant is interesting, hardly proven and a very long surgery with all its attendant risks including anaesthesia is not particularly attractive, before you even start thinking about the cost. 

    I have no idea whether axillary clearance is still a good idea or not. In my own case, I had several seriously enlarged nodes and the one biopsied was malignant. So I have  no personal beef. But I am not sure that applies to everyone. 

    Financial assistance for those with serious lymphoedema seems hard for many to access. I'm a lucky one - I can afford therapy, my arm is a little swollen but most people don't notice it (when I am not wearing my sleeve), I don't mind wearing my sleeve and do so as recommended and I have no discomfort. The fellow patient I saw leaving my therapist's rooms with an awful, red, about to burst hand may have a very different story. 

    Not everyone has access to qualified lymphoedema therapists. Financial assistance for compression garments may not include made to measure. Off the shelf serves well for many but may be useless for some.

    We know depression is an issue for cancer patients full stop. Breast cancer patients may be particularly prone given the effect on their sense of self, sexual identity and reproductive capacity. Many people experience the same reaction to wearing a pressure garment for the foreseeable future. I think your deathless phrase for my recent run in with multiple compression garments was "trussed like a sausage". I found it really funny (and temporary) but it's not funny for everyone.

    Finally (sorry didn't mean to go on so long) if people have a problem with expectations of "getting over" breast cancer in a year or so, imagine what it's like for the long term lymphoedema sufferer. I'm OK with it, but I do sympathise with those who feel the long term impact just isn't recognised. 

    Lots of things are worse - it's not a competition. I count myself lucky every day that I have not had a recurrence yet or a diagnosis of metastatic cancer. 

    Best wishes
  • Romla's avatar
    Romla
    Member
    7 years ago
    If it helps win your argument Professor Neil Piller is the leading researcher over here at Flinders University into lymphoedema and a big advocate for a Encore. He is very approachable but a very busy bloke.Check him out online.
  • Romla's avatar
    Romla
    Member
    7 years ago
    Agreed @Zoffiel - re Lymphoedema I’d be asking why your state Victoria seems to be the only one without the YWCA’s Encore program which specifically targets it.

    NSW is extensive as it has strong state govt support.The Y doesn’t get a lot of funding -access to a hydrotherapy pool is the major cost .Surely there are public hospitals in Victoria that may be able to provide access to a pool ?

    In SA we have 2 metro programs and a couple of regional programs all delivered at public hospital hydrotherapy pools. It just requires 1 hour per week of pool time and an area to chat / have a speaker beforehand eg an area in canteen at end of day.