ooohhhh.....i'm a wicked, wicked girl. how else to explain this lack of rest? this week i went the longest i've gone without sleep for quite some time - and without the aid of stimulants any stronger than caffeinne. by the fortieth hour of sleep deprivation, i was completely incapable of stringing words together in a coherent fashion. i think the only thing which stopped me napping at the wheel was the horrendous traffic on the drive across the city, back to our temporary digs. 
that was last night, following a hell night and day in the hospital watching my beautiful girl coughing fresh, bright blood into tissues, and submitting to whatever was thrown at her in the name of healthcare.

people, GET HEALTH INSURANCE, if it's at all possible for you. and also, don't ever undervalue the role of nurses in the health system. they are the ones who really care for you and deserve much better wages and conditions than they currently enjoy.

finding yourself at the mercy of the public health system is no laughing matter.  this week i have felt completely impotent, helpless, and very, very angry.  there is a radiation oncologist registrar out there who is lucky to be alive tonight, given the pure, unadulterated rage she inspired in me with her total lack of respect and sensitivity. thankfully, they're not all like her, and we have also encountered some really lovely, caring and empathetic individuals who have eased this journey just a little (most of them nurses!!! i think i'm gonna start campaigning for wage increases!!)

but the real issue is the SYSTEM.  in two days, we have been seen by four different radiation oncologists, three different respiratory specialists and three emergency doctors.  we have waited TWELVE HOURS in the emergency room, with no intervention, only to be berated like children over the urgency of the situation, and told we can't go home because it's too far from medical assistance.  TWELVE hours, and they considered the situation URGENT. it's absolutely, totally fucking ludicrous.

i'm struggling with a lot of anger, and most of the tears i'm crying are angry tears.  i'm so frustrated by my inability to be heard, to stand up for my daughter in the face of this vast machine which shunts her here, then over there and back again without so much as a please.  no one asks for permission.  not once has one of these 'specialists' given us options to choose from.  they present one course of action, only, and are generally quite defensive when asked to justify this 'recommendation'.

i've come to the conclusion that this whole exercise is really a lot like giving birth.  we have medicalised death in the same way as we have medicalised birth. in both cases, there is the potential for a cascade of intervention which is wholly disempowering to the people involved.

i'm worried that my daughter is leaving the world in the same way in which she entered it - painfully, clinically, and attended by people who simply didn't have time and care for her. it feels so unreal that we have come to this.

i have total empathy for people who spirit their children away from the clutches of the system, who refuse medical treatment for their kids, who fight the legal system to retain the right to choose what is best for their children.

through it all though, the one at the centre of this storm remains doggedly compliant - she's the healthcare system's dream, just as she was the education system's dream not so long ago. no matter how they approach her, she continues to smile sweetly at each person who crosses her path.  she is polite and grateful at all times. when the radiotherapy burned her skin to a crisp and instead of a chest she had a weeping, oozing mess, she gritted her teeth and bore it, going back for more each day and chewing on painkillers to help her get through. the only thing she has balked at has been the hospital food.  if i could just split myself in two i'd be home cooking her good, tasty, nutritious food, at the same time as sitting with her in the hospital.  alas, fruit puree and muesli bars is the best i can contribute at the moment.

she is an incredible girl, who teaches me so much about acceptance (or denial - i can't figure out which!), patience and determination in the face of insurmountable odds.

i don't know what i'm going to do without her.......