a balanced perspective

in order to maintain a sense of balance (i am a libran, after all) i feel the need to express some gratitude.

today, i arrived home after being away for an eight day stretch.  my house was so tidy. the washing up was done, the rubbish bin was empty, the recycling only had a  couple of bottles in it, the floors were swept and the glass doors shiny.  there was also no rotten food in the fridge.

i've had friends staying for the last month, and though i've barely seen them, they have left an indelible mark on this time of my life.  they have been incredibly sensitive to our needs, preparing food, playing and bushwalking and spending time with my little girls, maintaining my home, dancing and drinking red wine with me, and melting away into the night (to their caravan in the garden) when i needed to be alone. they have been my angels in the garden.

i haven't seen them since i've been home, but they ensured that my home was clean and welcoming for our return.

we went to dinner with friends tonight. the little girls had long hot baths, and we ate food prepared with love, to our dietary specifications. i was plied with red wine and sensitive conversation, and sent home with a bottle of wine and half a block of chocolate, and tired, bathed and well fed children.

whilst in brisbane meeting my daughter's immediate medical needs, i have been staying with her paternal grandparents.  they have opened their home to me and my family.  i am grateful for power and hot water on demand, comfortable beds aplenty, food i haven't had to cook or clean up after and the easy and generous provision of every facility i could require, including coffee machine, television and fridge which stays on 24 hours a day, regardless of the weather!

during the last couple of weeks, when i have felt overwhelmed by the demands of mothering my three children, all of whom are needy, and deserving of attention in their own ways, my younger two have been cared for, by relatives and friends alike.  i have been able to relax (just a little!) where they are concerned, knowing that they are being loved and appreciated and well cared for - by someone other than me - and that i can focus my energies and emotions upon the squeakiest wheel of the lot.  i feel really blessed that my kids have so many caring and functional adults in their lives, and are not entirely dependant on me for their physical, emotional and spiritual health.

i am living a sometimes unendurable nightmare, but throughout it all i am held, supported and cared for, and for this i am truly grateful.

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.......

i'm spending time in the city at the moment, firmly entrenched in the cogs of the 'health' system, and the cancer industry. it's such a dispiriting experience for me. i feel so sapped by the artificial air, the unnatural lighting, the chemically enhanced water.  my hair is dry and brittle, my skin grimy and dirty - breaking out in festy suppurations.  i feel truly feral here. how's the irony, hey?

i guess the heat doesn't help.  i spent the day today with my lovely daughter, her close friend and her mother (also a close friend).  we planned to go to a movie to escape the heat. saw a cracker of a movie - 'pitch perfect' - at the cinema at indooroopilly. that place was HUGE.  there were THIRTEEN different cinemas! i wore a dress with a halter neck and very little in the back and as soon as i sat down i regretted it. i was so aware of the grimy, scratchy seat i was sitting on. it felt like the carpet on a pub floor on my bare back. it was awful. 

anyway, we just hung out in the shopping centre all day, in the airconditioning and the fluoro lighting.  overstimulated by the huge array of STUFF. the sheer amount of it. and each time i see a $10 piece of clothing i think 'how is it possible to produce that and transport that here and pay someone to sell it AND make a profit????' and the whole place seems so impossible in it's very existence... 

i'm getting a bit more used to it now though, but it still doesn't fail to chip away at my spirit.

 

...........i actually just had to take a break from writing this to go and wash my face and brush my teeth...i was so uncomfortably aware of how festy i felt!.....i'm a tad more refreshed now........

anyway, there's also the matter of staying in someone else's house for an extended period. i'm staying with my exparents-in-law, in the suburbs, in the house my daughter's father grew up in. i have my own room here   :)   with carpet    :)   and air con    :)

but it is someone else's house though, ultimately, and i am confined to a room on the topmost, western side, where i read, sleep and obsess throughout the greater portion of each day and night.....geez, it sounds VERY bleak when i put it like that....

i guess that my life is really quite bleak at the moment...there's no hiding the fact!!

all i can hold onto is the wisdom gleaned from several decades of living - the surety that this too shall pass. NOTHING lasts forever in life. nothing. loss is an integral part of gain.  they need each other to form a totality.

and there are always little gems in there....somewhere...sometimes they're really small, and you have to dig around in the shit to find them! but they're usually there!

and so, we just plod along, don't we? mindful of the very shit we trudge through, searching for the glimmer...

isolated, disjointed thoughts running through my mind. there is no beginning, no end to this.
what is 'giving up'? how does it differ to 'giving in', or 'giving over'?
what does it mean when people say 'don't give up'?
what is 'acceptance'?
is there any difference between giving up, giving in, and acceptance or surrender?
i feel too tired to fight - is that a deficiency on my part?

all i hope for is peace, and dignity, for my baby. i don't want her to die fighting. i want her to die feeling at peace, knowing she is loved, and knowing that she lead a good and worthy life, that she will never be forgotten, or replaced.

there is this awful incongruity at play here.  this 'dying' girl seems so vital and full of good cheer.  if only we didn't know about this time bomb inside of her. ignorance truly is bliss......

we've chosen to schedule her radiotherapy sessions at night time, for a number of reasons.  first and foremost is financial - after dark we can access free parking, which is a bonus when parking costs usually hover around $30 for each visit to the hospital.  the other reason is that day time appointments mean hours spent in crowded waiting rooms, staring at bad daytime television which you can never quite hear, or magazines which hold no interest, or old people.....constantly being reminded that this is the domain of OLD people, not beautiful, poised teenagers who are just getting ready to throw themselves out of the nest and into life proper.

by night time it seems the staff have cleared the backlog, and she is seen sooner- sometimes even on time. so we have all day to do things totally unrelated to hospitals, illness and death.

today i took all three kids to the gallery of modern art.  we made stupid hats in the interactive kids space, bickered, annoyed each other, ate crappy food on the river bank - in short, pretended like this was a holiday and we a normal family. tomorrow the little girls are off to visit their aunt and cousin in cairns for a while....trying to distract them from what's going on here....though i wish we could all stay together, forever....i don't want to miss a moment.  i don't want any of them to miss a moment.....

this really is a long, slow, torture.  i don't think i'll ever truly master the art of presenting a happy facade, when inside my heart is slowly breaking. i want so much to have real, fulfilling time all together, while we have the chance, to make some memories to carry with us after she has left us. but i am so consumed with sadness and apprehension for what is to come.....

the dreaded 'twenty twelve' - the end of the world as we know it

my world didn't end on december 21 2012, as predicted.  the end came a day later.  the night of the predicted end, i danced under a bright moon, with friends and strangers on the streets of nimbin.
the following day i took my daughter for an xray (necessitated by a coincidental, or symptomatic, bout of pleurisy) which revealed a 'shadow of concern' on her left lung.  that's all i needed to hear.  in my heart of hearts, i knew that shadow was indeed a concern, and my grieving began in earnest on that day.

i have not been taken by surprise by the diagnosis of secondary, metastatic angiosarcoma on the lungs.

in the two weeks since, the blank canvas of this blog has taunted me.  here's the space i have annointed as my therapy room, yawning it's emptiness at me.  i've written a thousand posts in my mind.

the problem is that i don't occupy any one place for very long.  every morning, i awake with tears stinging my eyes.  my daughter is dying, and i am forced to witness.  as the day wears on,  my resolve strengthens (usually!!) and i swing wildly between a very buddhist perspective of suffering and detachment, through the minefield of mindfulness practice, tarrying a while in denial, and usually ending the day in tears again, railing against the injustice of  this disease which knows no compassion.

how to chronicle this journey?

well, i've decided to continue in the spirit of this project.  i'm told i will be happy one day.  somehow.  people do survive the most awful circumstances, and somewhere out there is someone doing it much harder than me.

so i'll continue to write, as the mood takes me.  sometimes, i'm sure, i will chronicle despair and loneliness. other times, surely, will be hopeful.  but mostly, i'm still aiming for honesty and truth of expression.

so, today started like many others.  woken by my youngest stroking my face, struggling through my dreamscape toward a waking life that announced itself with tears.  swallowing the tears to face the day, and the necessity of providing food for my family.  fielding phone calls from loved ones needing an update, needing connection with us, needing us to know that we are loved.  lying beside my daughter, tears falling soundlessly from my eyes, wondering if there are things she has always wanted to do - hot air ballooning, skydiving?

touching base with the medicos - who do we need to arrange appointments with? what information needs clarification?  musing, why does the public funding of one therapy make it more trustworthy than another which is paid for privately?  speculative medicine is speculative medicine, whether it's funded by the public purse or not.

the highlight of the day is a spot of retail therapy.  only the prospect of losing her could possibly shame me into buying for my beloved the Dead Sea Spa therapy pack on offer at the suburban shopping centre we visit.  the little girls are appeased by new pyjamas, swimmers which fit, and denim shorts with matching plastic belts. i wish my fears could be so easily swept away......

we are home, briefly, and i am forced to remember what it is like, this journey of 'treatment'.  a too brief couple of days back in the embrace of the forest, searching for some normalcy, where none is to be found.  i'll spend the next couple of days avoiding eye contact while i try to play catch up - with the laundry, with work, with friends whose need for connection forces me to face that which is unfaceable.....as i navigate this new world, which claims me despite my resistance.