Amanda, as one of those rare small business people who actually doesn't have a problem with paying taxes, wishes we had an even better universal health care system than we do (in comparison with other developed nations ours is pretty good), I am happy to see my tax dollars going to fund PBS listed drugs with astronomical price tags that may at present extend life by an average for three months. It's only in this way that research will continue to develop in ways we may not be able to envisage right now. It's the only thing we have to extend life, alleviate symptoms, and buy time in case something even better is developed and comes along in time.
I am shocked to learn that you are not being offered treatment on compassionate grounds, and being excluded from trials on the grounds of having been too
heavily pretreated. I have no words.
The problem with the rationing of health services, is that results are discussed in terms of stats; one in ten, two out of five and so on. But behind these figures are people, with families, with friends, some contributing to our world being a better, gentler place. Like you. Your heart shines out in all your writings. I've read every single word you've posted on these pages. I so want you to be one of the ten. And I don't care how many of my tax dollars it would take (if only your meds were one the PBS).
It's the same argument used with mammograms: no point starting earlier than 50 because too many false positives, too hard to diagnose younger women, not worth the expense vs the lives saved. Tell that to the one in 5 women under 50 who are diagnosed. In my own case, if I'd waited until 50 as advertised, I would have been well on the way to dead by the time it was found instead of it being caught stage 2, grade 2, no node involvement (diagnosed at 47.5 years via mammogram and ultrasound 22 months after my last allegedly clear scans). Is it a waste of money that my life may have been saved? I continued to work through treatment, I continued to contribute as a taxpayer. My husband, Mum and friends certainly think so. And as is to be expected, so do I.
Like you, I am doing all I can to be well, stay well, and am frustrated by the total lack of interest by my care team as to diet and its role in hopefully keeping a recurrence at bay. I've made it my mission to research this side of things as best I can, but what of people who may not have the skills, or the knowledge base to do this? I can't understand how in 2013 this is not a core part of the treatment plan. And I know these pages are supposed to be a non judgemental space, but just as you can but wonder at the patients in the chemo ward stuffing themselves with hot chips, I wonder at the women on here who encourage themselves to eat whatever they feel like while they're going through chemo. If ever there was a time to feed our body with as much good stuff as possible. I wonder if this one of the factors in my handling chemo relatively well. As tempting as it would have been to deal with it with tim tams, I was fuelling myself with a mainly vegetarian diet; home made, not processed. Yes there were treats, but they were a treat, not a rule. I'm no food angel, far from it, but I sleep a little easier knowing I'm trying to take responsibility for my own health, to do what I can to reduce my risk of recurrence, and it really, really, really pisses me off that this has to be done without the lead or support of my care team. None of us should be left alone on this.
Ok, so there's my rant for the day (week? month?).
Amanda, I really hope you've had a special Father's Day with your family today, celebrating the first day of spring while you were at it by taking time out to smell the jasmine.
May you stay well to see all the life milestones your heart desires.
xo
