Riduculous and frustrating! Rant warning

I'm ten months post surgery, four months post chemo and finished rads at the end of May. My health has generally improved--I don't feel 'sick' any more, but I'm struggling with lymphedema in one 'foob', cording and scar tissue in my armpit, tendonitis and myalgia in both legs and feet and now lymphedema is setting up camp in one leg. So I'm not exactly 'well'.

I finally managed to get access to a physio (please don't recommend I see an EP, there isn't one within 150 km) and between her efforts and mine, I'm doing the best I can. Low and behold another physio pops up at the hospital where my oncologist is based (over 100km away) with an appointment time, so I went to see her.

I'm running out of options through our local community care facility which has very limited resources, I explained this to physio 2 and we went through the exercise program I'm doing at home. "Well' she says "Since you are trying to self manage, perhaps we can access some short term funding through our Community Interlink program." This is a little pot of money which can fund programs for people in my situation. She approached them for funding for a 6 month pool pass for me. I like to swim, it gets the weight off my feet and would help with the lymphedema, the pool is 20km away, but it costs. I'm only working two days a week and haven't got much to spare at the moment.

I thought this was a great idea, then the frustration started. Her hospital won't fund me because--even though I surgery and chemo there--I live here which is outside their catchment area. The funding model here has changed because they are moving to NDIS, so to access the money I have to meet the criteria of the disability act. As some of you know, getting classified as disabled is not that easy. AND I DON'T WANT TO DO IT!

The irony. I can't get the help I need to avoid becoming disabled, because I'm not yet classified as disabled. What hoo-haa.

Now I'm being offered a bit more physio (depending on availability) if I will travel over there to get it. How much do they think that will cost when lined up against a $400 pool pass that could genuinely make a difference? This sort of bullshit costs the health service millions and millions. Yes, I know there are rules, but the rule makers need a kick up the arse.

wendy55
Member
8 years ago
beaurocrocy{Sorry cant spell the bloody word} at its best! do you have a member of parliament you can contact or a McGrath Breast care nurse who could advocate on your behalf, even try your local paper, I did, and, as the person there said to me, if we dont know about these things, we cant help people! Worth a try?
Hope you feel a bit better now after your"rant" We are ALL allowed to have our say and it helps to highlight the anomolies
in the SYSTEM, maybe someone else might have ideas as well - keep calm - and carry on as the saying goes,
wendy55
Zoffiel
Member
8 years ago
I'm a good advocate and can navigate complex systems to find options that could help both myself and others in my situation. Even if I can't spell ridiculous when all my blood has rushed to my head.
I had to work really hard to access publically funded oncology delivered through my local hospital because I vowed ten years ago that I would die in the street before I'd use the private services here again. That has opened the door for a number of people who have followed my footsteps in the last few months. I'm really proud of my efforts there which have been beautifully supported by my local hospital in general and my breast care nurses in particular. It could lead to some really good things, we will wait and see.
Now it looks like I have to put my battle undies on again. It's exhausting. Do we have to fight all the time? I don't want to be back in the paper. Really, I don't. I just want to move on, make the best of what ever time I have before I'm back in the shit and stop being the 'Cancer Woman' for a while.
I'm just about over the whole thing, but can't stand the idiocy. Why spend what I can only guess would be hundreds of thousands of dollars treating someone over ten years then go, nah, the last little bit is against the rules. If I could pay for this myself, I would. As I have in the past. I can't at the moment. It shits me to tears.
June1952
Member
8 years ago
Hi Zoffiel
Do you have a masseur near you ? Hopefully one that has studied some remedial work as well. You need help to get the cording 'cracked' (your physio should do that easily) and then if the masseur can use some silicone Chinese cups (and bio-oil) to get the fluid on the move you will get a lot of relief from the lymphoedema. Hubby did learn to use them and that was great but with his dementia that option is lost for me - I don't know your circumstances but perhaps that is an option ? I can put you in touch with a supplier of the cups - they are in Melbourne but you can order on-line like I did).
Good luck
Summer :-)
iserbrown
Member
8 years ago
So you are a square peg in a round hole - surely there is someone within that can advocate as not all fit as precisely as bureaucrats would like! Don't get me started on them; different life to BCNA but goodness they are a pain in the behind. They live in their own policy, process land and nowhere else and reminds us of the saying "Common sense, it's not that common"
Zoffiel
Member
8 years ago
We're cracking the cording, @Summerhill38 . Truly disgusting and it is a big job this time. We're concentrating on the smaller strands in my forearm and around my elbow and doing vague poking at the chunks in my armpit. The physio, now she has figured out I'll bite the bullet and tolerate the pain, does it with all the enthusiasm some people have for popping bubble wrap :)
Kat09
Member
8 years ago
sometimes you just can't make sense of idiocy and no matter how hard you try to understand how they get to the decisions they do you just can't, that is because you have commonsense and the two things just don't match. I know that Marg, @Zoffiel you live in a regional area, I also know that country towns for the most part are very supportive of each other ( ex small town country girl ) maybe there's something the local swimming club or another frequent pool using group could do to help? Season passes can sometimes be available and can be offered at a discounted rate. or maybe there's someone who knows someone who has a pool in their backyard?
I hope that you get some relief from your pain
Kat x
primek
Member
8 years ago
I wonder if an article in your local paper about the whole thing...might just result in a free pool pass. It would mean telling your story...yet again...but why not try. Worth a phone call to the paper or an email.
fairydust
Member
8 years ago
@Zoffiel its hard to swim upstream. Actually they are not helping you swim at all. There is never a welcome mat when you become ill.
Rather than go out of their way to help the forces that be make sure lots of lovely hurdles are placed in the way.
Ranting is good. Feeling fed up yep .Actually having the energy to illicit change is exhausting.
Why does it have to be this way? No idea
Afraser
Member
8 years ago
I'm with primek, go to the media. I'm over suffering in silence (about almost anything!) and while a rant helps the soul, it may not fix the problem. I got so incensed at Telstra's stupidity (completely cancer unrelated!) that I wrote to the head office, detailing the garbage that passes for customer service and threatening media next. Problem fixed in a jiffy and a significant discount off my next bill for the "inconvenience".
onemargie
Member
8 years ago
What a fucking load of shit!, fuck I am sick of us all and the struggles with funding for this and that and the fucking hoops we have all had to try and jump through to get anywhere with this bloody government bullshit. What the fuck is wrong with the world today seriously you pay tax your whole working life and now for some stupid fucking dickhead reason "we don't meet their criteria ". Like primek says common sense is a bloody super power these days. I went to my local member and she listened intently but I haven't heard back yet I was prepared to stand on the steps of Parliament House with my bloody shirt off and show these bloody politicians my bilateral mastectomy scars and maybe then me and all of us "might meet their fucking criteria" who's with me!!! Sorry for the f bomb just pissed off again for Marg Brenda and the rest of us