Frustrated
It is bad enough trying to cope with diagnosis, feeling unwell, only having limited capacity to walk and still maintain some kind of family life, but I would just like a doctor in my court fighting for my wellbeing.
First it was the public/private division. I was channeled into private last time before I knew that it didn't seem possible to get back to the public system. It ended up costing us at least $20000 given the gaps of private health insurance. We thought it was okay, I was young, about to go into full-time and I would have years of working to build our financial base. YEAH RIGHT. One year of working and now I have secondaries. I was determined not to go down that path again. We just can't afford it.
So I eventually get the medical world to accept that I want to be in the public system. I thought okay now this group will look out for me. YEAH RIGHT. My hospital doesn't have radiotherapy so off to another hospital which was fine until I had general questions about living with advanced cancer - then they directed me back to my oncologist. Only my oncologist has put me forward for a trial, so she has basically passed me on to the trial people. I'm not her problem again until the trial is done. When I met the trial people, the research fellow and the clinical nurse, they were nice enough but they were interested in their data not how well I live. Okay to be fair this might change and certainly now that I know that they are my point of call I will be hassling them.
My GPs are nice but not forceful but I plan on meeting with them and pushing to see what they can do.
We feel frustrated. I read the excellent post from last year on the invisibility of secondary cancer and it really captured how I feel. I just have to trust that I will find the medical support I need.
