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
Comments
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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.2 -
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.0
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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 wishes6 -
@kmkam Yes but private pools are expensive to hire unlike hydrotherapy pools in public hospitals which may not always be fully utilised. My Encore hydrotherapy session was 5-6 which was probably not a busy time at the public hospital - I remember we had to be out by 6 as there were classes for pregnant women held then.
After my course the hydrotherapy pool was filled in -too old and needing extensive expensive repair we were told.A nearby alternative public hospital with a hydrotherapy pool was sold to an aged care organisation. Basically the Y here researched many private options including the alternative mentioned but costs were too high.Encore has no state govt funding here- I believe it does in NSW which has an extensive program.
Victoria has outstanding sporting facilities surely they could support Encore in Victoria by providing after hours(?) access to the Encore program. There’s plenty of research supporting the benefits of the program.
Btw my group arranged our own exercise at a nearby pool but often busy centre and temperature not that required for hydrotherapy.Still strong social benefits.
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We don't have a dedicated lymphodema specialist. There is a 'porridge' pool at the Y. It's disgusting. Maybe I am just sqeamish about other people's body fluids in warm environments. There is no regular coordinated exercise program for post surgical patients either terra or aqua anyway.
The community physio who does her best to help manage lymphoedema is on long service leave. She has not been replaced. She only works two days a week There is novone to help fit a sleeve; you order via catalogue with the best measurements you can come up with. If it doesn't fit, you send it back and wait a couple of weeks for a replacement. Then repeat the process. The breast care nurses do their best, but they spend most of their time with newly diagnosed people. As they should. Compression garments are not, and should not be, their priority. Battle grundies in several colours required.
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@Romla The public pools I mean are council owned. Melbournians have got very hot under the collar about recent attempts to close local pools. Many have been rebuilt and are now in excellent condition. Such a shame they can't work the Encore programme here.0
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@kmakm Oh - would need to be indoor as temperature required for hydrotherapy I gather is higher than a normal heated pool and thus expensive to run.
Maybe with all your brilliant sports stadiums ( my sons did basketball tournaments in Melbourne) some agitation on the health front needs to be done esp based on what @Zoffiel is describing in regional Victoria.
I still reckon your public hospitals would have under-utilised capacity in their hydrotherapy pools that could be used by a community organisation like the YWCA delivering a rehabilitation service for free to breast cancer people 1 hour per week.0 -
Great post.
Our local breast cancer group fundraised to send a local physio for speciality training and buy equipment...such as a vein finder for thise ladies too, laser equipment fir lymphodema and most recently a cold cap for the chemo unit. Oh lets not forget brand new chairs.
As to encore programs ours was cancelled twice due to the health of the person running it. I offered to do the training but it wasn't the right time for me financially to do it.
I might raise it again later in the year if it hasn't started back up. Whilst we have cancer exercise programs it's nice to have bc specific ones. Our bc nurse would know more about I expect.2 -
I’ve found a site listing all Victorian public hospitals and will find out which ones have hydrotherapy pools0
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@zoffiel - You would be (and probably have been) brilliant in an advocacy role.
As for the lymphodema issue, I have not had it but I believe, as someone with cording, I'm a good candidate. I go to a specialist physio but even with full private health care, this costs nearly $60 per session. So far, one of the highest ongoing gaps that I have encountered and unfortunately, something I have to ration. Aquaerobics is about the only organised gym session I've ever enjoyed and I have always recognised the benefits of working out in water. I used to do it when I was younger, then through each of my pregnancies and now, I'm hoping that Encore are going to have a session at the right time/place for me to access. @romla is right - the drive to close ageing pools, particularly hydro ones, is very strong in Adelaide. They are expensive to repair/maintain and many take up prime real estate. The ones that do offer general aqua classes, are expensive to attend.0 -
Sorry @Zoffiel am worried I am stepping on your toes.I have been a bit surprised that Victoria has no Encore program - am mor e than happy to let you investigate your public hospitals to see if they have hydrotherapy pools. I especially think it may be a way forward for regional Victoria rather than that awful pool you described. Hygiene should be paramount in a hospital and water temperature has to be high about bath temperature 32 degrees/ more to avoid injuries and relax muscles to maximise benefit.0
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Thanks @romla
My main focus at the moment is the lack of funding for a dedicated lymphedema physio at the local Community Care Centre. Its a very narrow agenda of trying to persuade the hospital to fund one allied health professional for one or two days a week. That's it.
The greater problem of lack of exercise programs and facilities is outside my scope at the moment (the hospital does run some classes at the porridge pool but only a couple of times a year)
I have learned in the past that concentrating on achievable goals brings better results. When you diversify you will inevitably fail because it is too easy for the powers that be to say no. Small steps. One thing at a time.
It's really important to get as much solid information about the current situation--who makes the decisions about funding in those areas, which pot of money could be raided and what, if any, plans there are for the future. The breast care nurses can point me in the right direction there without compromising themselves Then I intend to start a letter writing campaign--once again my BC nurses will accidently get to see my drafts to check for any inaccuracies. Then I'll be waving my dodgy, but still manageable, arm at a couple of media buddies wondering why there is no affordable services to help a poor pensioner avoid being an ongoing burden on the health system.
Lymphedema is not just a cancer issue, it affects all sorts of people with all sorts of different diseases. It's a chronic condition that affects the quality of life for a wide range of people. That is a good lever in itself because it eliminates any arguments about one group benefiting at the expense of others. I'm already lining up a couple of other people who I know struggle with the issue to keep the campaign ticking over; neither of them have had cancer.
The point of my original post was not so much to ask for advice about what I should be doing, it was an attempt to get people thinking about how they can use their own story as a tool to make positive changes for themselves and their immediate community. You can make a difference, you just have to focus on what is possible with the resources you have available.
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