Tuesday, March 11, 2008

Really just SO over it

Our health system that is.

I have just requested a complete copy of my records, as I suspect that bits I read last year (and noted in my own diary) may now be missing.

Currently I am getting steadily, but very slowly worse. That's okay apparently I'm not sick enough to bother doing anything about it. Of course when I am sick enough that they have to do something to keep me alive I will be too unwell for them to do anything about it and they will shrug their collective shoulders.

There are actually three different options out there - surgery, chemo or radiation.

Somewhere along the line someone has decided surgery is not an option again. I can't find out who decided this, what qualifications they have to make this decision or whether they have even examined me - I just keep being told that is the decision. People with much more widespread cancer than mine get surgery, but I can't. No idea why. It would appear from the info that I have that surgery would be highly effective for several years at fairly reasonable cost considering.

Chemo - there are about six drugs left I could try. Three are available within the health system. Funnily enough a smart arse oncologist told me last May with absolute seriousness and his hand on his heart that there was no other chemotheraphies available for me. He's a big fat liar obviously. Same man told me that there were NEVER clinical trials done at Waikato - yet a quick search of the internet will show that there are dozens going on all the time, several with smart arse oncologists name on them. I no longer see him as I got sick of the mind games. However he still has authority over what I get to take and his call is that there may be three left but he doesn't think I should take any of them until I am critically ill. That's fine who in their right mind wants chemo. The lies and the lack of choice isn't okay though.

Radiation would take all tumours back to managable levels and get rid of my constant pain. Apparently that isn't an option either - not sure why, again no one will give me an answer. Too much radiation makes surgery very difficult but as surgery isn't an option what does it matter. We will wait again until it is life threatening.

I have declined to go through any more of this crap for six months. I am just not interested in being told that I am getting worse but I should take some paracetamol and maybe a codeine. If I don't feel significantly worse in six months I won't bother going back then either. However a thorough read of all the records might be interesting.

I have a nasty feeling that if we had just a little more money I could privately buy myself a lot longer life expectancy. Though I have a lot more intention of living than the professionals seem to think I should have.
I am forever being told that I need to accept that this isn't curable (I do, but I don't accept that it isn't controllable. And actually while I don't believe I will ever get a cure I do know that some people do so a cure is not impossible technically)
I am also often told that I am 'lucky' as I have gone statistically past the point they thought I would have (what the hell is lucky about having cancer FFS - but whatever)
They express surprise that I am still working full time too (I guess I am supposed to be sitting round getting ready to die - unfortunately I need the money)
And I need to get past the angry stage and learn acceptance. (when I die I will accept it - until then I will remain angry, particularly when I am not allowed to ask questions or have any say in my treatment)

Was also reading the other day about tumours with low malignancy potential. These are growths that are cancerous but don't tend to invade anything vital, so while they grow they don't cause a lot of harm other than leaning on other body parts. Very interesting reading - often misdiagnosed in histology as more malignant tumours, and I fit the statistics for time to recurrence, sensitivity to marker blood tests, response to chemotherapy and age. I don't fit the statistics gathered from the normal ovarian cancer at all. The interesting thing about tumours with low malignancy potential is that the mortality rate is very very low - women die with them but not because of them.

This reminds me that I was never adequately biopsied.

So maybe lifethreatening won't ever happen.