It's back.

Zoffiel

After a disease free interval of 10 years, my lobular carcinoma is back. You bewdy. The first tumour took months to diagnose, the new one was in the site of an old seroma that I had been monitoring for years. Now, suddenly its in  my lymph glands and has vascular involvement. CT and bone scans..I'm back on the cancer train.  I'm not as upset as people seem to think I should be, after all, it's taken 10 years for the 'second boot to hit the ground. It happens. The thing is, I'm disappointed to find that some critical aspects of cancer treatment in region Victoria have not changed.

10 years ago I took the recommended route and signed up with the medical oncologist that was suggested. This company is a private operation that bluntly refuses to bulk bill any of their patients. In essence, as soon as someone up this way gets a cancer diagnosis, the money tap opens and spurts funds into their already bulging coffers. This time I've decided that the private med oncs have enough fancy cars and flashy homes so I'm seeing an oncologist who bulk bills. But that means I have to travel to Melbourne.

I'm pretty shitty about this. I want to know why, given all the palaver about equity of access, there has been no obvious attempt to make cancer treatment affordable in country areas. The situation with radiotherapy has improved--it's  now subsidised so I won't be out of pocket for that element of my treatment. For which I am extremely grateful. 10 years ago I couldn't afford radiation therapy and was not told that I could have had it in at a metro area. So I didn't have it. Which may (or may not) have made a difference to my current circumstances.

I'm not working and simply can not afford to pay those pirates--it would cost me my home and I'm pretty much screwed anyway so being broke, homeless and dying isn't an attractive option. I might add, that I worked right through my first episode and have been made redundant recently, so the not working bit is not by choice.

Ironically, it costs the system (that's you and me) about the same for my to claim VTPAS for every trip as It would to subsidise the gap between what the Pirates charge and what medicare rebates. I'm going to Make A Fuss. Anyone else got a tale to tell about this?

primek

I agree ...it is Iptas here ....but by golly it is slow in refunding your money....and it doesn't cover meals eyc. But I believe the public  system is the one  doing all the research and up with the new treatments...so my belief is this is your best choice for treatment anyway. I'm in remote Nsw and have to travel to Adelaide for my Breast  surgeon (500k) but fortunately an oncologist oversees  my treatment here (flys in) under the expertise of a bc oncologist in Adelaide.

Zoffiel

You're probably right, primek. I'm very happy with the quality of the public system. Of course it has it's faults--most obviously being under funded, under staffed, under resourced and over used.
My main problem has been keeping the lines of communication open. It can be really difficult to co-ordinate care when your specialists are in multiple and remote sites. You'd know about that. Bless the Breast Care Team here, they are doing their best.
I had my most recent surgery in Melbourne and the dramas involved in draining a seroma today were just ridiculous. It's taken three days to achieve something that would have been sorted in a couple of hours if I lived in the city. And that's not because the service isn't available;  it took that long for everyone 300km away to sign off on it because I'd had the surgery there and no-one up here wanted to make a decision without endorsement. That was my choice to a point because I'd opted for reconstructive surgery which isn't available here, but I have to wear the consequences. I can expect the same circus when I start chemo (assuming I do actually start it)

Glemmis

I live in the city & was lucky to have a choice between private or public treatment after my surgery & chose private so I could have chemo at the hospital where my surgeon is & where I was having mammograms.  It doesn't cost anything as they get around it by admitting you as a day patient & health fund totally covers the chemo & any drugs you take home & blood tests. There are only 5 or so patients at any one time & am familiar with all nursing staff & breast care nurse so it is positive as it can be in that situation. Will have radio done at public hospital. 

Zoffiel

Hi Glemmis, Chemotherapy if 'free' here too. It's the visits to the oncologist that we have to pay for. Out of pocket expenses  are significant. If you are not well enough to drive100 kms to see them at their base, they charge a premium $ of 'petrol money' to see them on their weekly visit to our town. I'm guessing they see 30 patients on that day at $20 each for travelling. Nice money if you can get it.
Look, I know it sounds like I'm bitter and want something for nothing, but it galls me that we don't have feasible choices here. I know that is part of the deal when you choose to live in a remote area--you can't expect the same level of service as metro folk. But it really bugs me we have to pay so much for the basics.

Glemmis

Yes sorry my oncologist bulk bills. That is very unfair, it should be the same everywhere & resources made available doesn't matter where you live. Having the disease is bad enough without having to travel & added stress on top of everything else. 

Brenda5

Just an idea you may not have considered, sell your house and move to Qld and buy a cheaper house. I live in Burrum Heads, half an hour from Hervey Bay. I got all my treatment free and I did find a bulk billing GP there as well. My husband has been unemployed for 8 years. It seems once we're over 50 we have very little chance of a job. Public health system here is good though.

Zoffiel

Gawd, the thought of moving... My son, deeply sympathetic soul that he is (no idea where he got that from) called in the other day, had a cuppa and said "Um, Mum, are you going to start chucking some of this stuff out?". I got a bit miffed and told him I might have a clearing sale and sell all the tools in my workshop. Transfer my interest to knitting or some such instead of building, hammering and welding. That would constitute cleaning up, surely. Apparently that wasn't quite what he had in mind

He has a point. The whole idea of getting my affairs in order is paralysing me. I keep wandering around thinking "Where do I start?". I was in the same head space 10 years ago, but now things are a bit more serious.

Barring me having  some sort of accident (which I'd like to hope would be of both a spectacular and ridiculous nature), this disease is going to kill me. Logically, and scientifically, I'm in no different a position from anyone else. People die unexpectedly--it will happen to someone today--the only difference is that I know it's likely to happen fairly soon.  But, and this is the big but, what am I going to want to do in the meantime? Potter with my stuff, I'd predict.

I might start small and prune the linen cupboard. Who needs 20 sets of sheets? I've already gone through my clothing and lugged garbage bags of really quite stylish garments and foot ware to the op shop. But what do you do with 100's of pot plants, multiple outdoor settings? Dozens of cushions. Rack and racks of timer and steel...So no, I don't think moving is an option right at the moment.