Battles

@MissGremlin

I think you're right, I think I have just put it in the too hard basket. It definitely feels like i've been placed there medically. The really frustrating thing is the technology and treatments are there, but due to costs and things taking so long to get accepted and funded as a standard treatment, most of them are just our of reach for most people's bank balance. Your only hope at this stage is trials. And you have to hope you have a medical team is looking out for you in this regard. I've searched myself but there's a lot to search through and it just feels like it's another fight on top of everything else. It shouldn't be this hard for anyone in my position!

@MJG017 you're right it definitely shouldn't be this hard for someone in your position. These options should be a first priority given that others have started failing. It shouldn't be a wait and see game and it certainly shouldn't be all on you to try and find what options are available to you.

@MissGremlin

Maybe I was a bit naive the past couple of years when I was constantly told about all of the options available. They're there, but only for a lucky few. The rest of us seem to be acceptable losses.

@MJG017 and that's really not ok. Makes me so frustrated for you to be going through this.

@MissGremlin

Thanks. I'm a bit frustrated myself. 😉

It is reassuring to know both my GP and this new psychologist seem to be equally concerned and appear to be advocating for me. She did ask me at the appointment if I would consider speaking to one of the oncologists in that centre. I said of course. So maybe she will arrange something there... i'm not sure. My GP wants me to go interstate and/or talk to an oncologist in Sydney or Melbourne. He says they're much more likely to try newer/experimental stuff and that Adelaide just seems far too conservative as far as treatments go. So we'll just have to see what happens. While it is reassuring to know I have these people on my side, it's extremely worrying (and pretty depressing) that they have the same concerns about what has been going on.

@MJG017 i can imagine you would be.

I'm glad they share the same concerns and seem to be advocating for you. Hopefully she can arrange something to speak to one of the oncologists there. I definitely think talking to someone from interstate could be helpful to see if there's other options treatment wise. It's very worrying that they share the same concerns cos clearly there's flaws in the system that aren't being addressed. Kind of like the mental health system and how broken it is.

@MissGremlin

I admit that I was never a very ambitious person. I was too busy trying to find where i belonged in the world and trying to figure out how the whole "talk to people" thing worked. It never really bothered me, not having a lot of money, I always felt there more more important things to chase. I just never thought it would end up costing me a fair chunk of my life. But most of us here have probably have our own stories of the health system (any of them) letting us down or failing us.

@MJG017 I was an ambitious person until anxiety really kicked in. Most of your life has been spent in survival mode so ambitions and money were never a priority, simply trying to find where you belong has taken so much of your time. Yes alot of us have our own stories of how we have been let down by various health systems, it doesn't make yours any less important though. Yours if anything is so much more important though given what's at risk.

@MissGremlin

I sort of look at it like some people, especially kids, don't get long to live at all. At worst, i'll get 55/56 years (hopefully a few more) and that is a lot more than some get. So I try to think about that and look for the positives. But when it's ourselves, it's the mental toll that is so hard to ignore no matter how positive you try to be. I'm so thankful to have s few really supportive people around me now. I don't know how I would have dealt with this all if I had the support network I had even a year ago... that was a number so small, that I had more hands than I did people.

@MJG017 yes it's horrible when lives are taken way too soon. Yes that toll it takes mentally when you are going through it yourself is hard and it doesn't matter how positive you try to be it's always going to have an impact. I'm so glad you have some supportive people around you now, you definitely deserve all the support you can get. That's what makes all the difference is having others to lean on when things are tough. The forums here is the only support network I have and I'm grateful to have it, but it would be nice to have people in real life.