kindness and terror: don’t read the test results

i got both great results, and terrifying ones today.

my GP said that there’s something about the bowel cancer that makes it easy to treat.  because alex was not there, i didn’t know or work out what the word was because this is all a weird and frightening blur to me.  this is the good news.

the terrifying one is that one of my doctors sent me directly a set of blood results. my cholesterol has risen one point since late last year. (it was high-ish last year, given my diet, but not enough to be concerning). my tumour markers are over 1000. normal range is 200, top.  all of the liver Things at the top  are erratic, and illustrate that the cancer is having an effect on my body – just not in the basic levels, that blood tests usually see. i don’t understand the words. they scare me.  it is again, all another sort of hidden world, a puzzle.  i will need to re-emphasise that i do not WANT to see these things because i don’t understand enough off hand to make any decent difference or any sort of comprehension. don’t post them to me, seriously. what am i going to do, other than frantically doctor google stuff, and then not understand half of the wikipedia words about it anyway? fucking doctor google. he’s a shitty doctor.

but speaking of puzzles – a highly recommended liver surgeon in sydney replied almost instantly to a request for a second opinion on my treatment options on a friday night. from his phone.  he would like to see me next friday.  this is because, right now, the weird thing is not the bowel cancer, but the liver secondaries. always the liver.  what the fuck, liver.  his statement, after saying he was sorry i had liver mets, that it did sound very unusual.  i like that this is doctor talk for ‘ooh! really?!  let me at it!’. my appointment is made for the afternoon, giving us a safe amount of time to drive up, and allowing us to stay the night at alex’s aunt’s house. i really like alex’s aunt.

my current freak out cycle is about the fact that they  might all be wrong again.  what if it is super fast growing and super invasive and that i am about to die and that nothing they can do will fix it and that the liver tumours are destroying me and i am helpless, helpless in the face of this, and no treatment will work. there are so many books i want to read, and i want to see my friends kids grow up, and i want to hug the people i love so many more times. so, same as usual. two anxiety attacks today.  GP told me to pack in the valium as needed – that i need to take them, i need to stay calm.

i also had a freak out about SUGAR! and how it is the ENEMY! because of something? then i read some actual real science websites about cancer who explained sugar is ok. given how little i can keep down at the moment (today, i threw up lunch. it was honey chicken. fructose), powerade is keeping me alive and sane.  maybe that is a slightly over the top statement?

also yesterday’s family issues were resolved today, in a surprising and heartwarming way. this is a part of the kindness of my post.  other parts of the kindness – parcels, letters, a liver stuffed toy (holy fucking shit it’s cute), and my friend Cec setting up a GoFundMe account. i was tempted to crowd source, but i felt really embarrassed about it. i feel so apologetic about the cancer thing in the first place, no seriously, i am so sorry i have cancer and that i have to tell you and that i made you sad, oh god, that i felt too guilty to set one up, despite my crippling fears of how we are going to eat, pay a mortgage, and fund my out of pocket expenses.  i’ve talked about the public/private hospital divide before, and the difficulties around my decision to go privately.  i think it is the right decision for me, but it is a very, very expensive decision, and i am scared of that.  scared and a bit angry. i stare at the bank balance – if i don’t spend a cent out of my account, i have two mortgage repayments left.  my income has stopped.  how do people do this? no, seriously: how do people fund cancer treatment? it baffles me how people manage it in the private system.  i am overwhelmed by the generosity already. i cannot put it into words.  any help is amazingly appreciated, and anything that goes beyond our basic living expenses, and my treatment, will go to the Cancer Council.

(context. right now i have a $50 pathology bill. a $1000 colonoscopy bill. the biopsy bills haven’t arrived yet but i’m expecting $400.  a $330 bill on monday, $130 on tuesday, and the PET scan – not disclosed. then, an oncologist, who didn’t give me figures. i will get under half of this back).

Here is the link to the GoFundMe. also in my sidebar.

http://www.gofundme.com/aahq1w

ONE thing i really want to make clear – i am still in a very lucky position in a lot of ways. i am not on the streets – i have a safe house, a supportive family, and a lot of stuff many people in the world with cancer do not, and will not ever have. my workplace are allowing me to take leave without pay – i have something to return to at the end. i might get income protection (i might not, because my bipolar/epilepsy mix makes me ineligible for a lot of it). i am blessed.  this is expensive, yes, and i have complicated reasons for going private that i sometimes question – but it was a choice, because so many people insisted it would be better if i did. my hospital excess has been reached – my outgoing costs are now the gap amount for tests, appointments, scans & basic living (ie food, medication, help w. mortgage). every cent i get here is so incredibly appreciated that i don’t have words.  i will keep track of it, and be grateful for every penny that i get, and i will account for it as well – and will donate what is left to the Cancer Council.  thank you all so much. thank you.  the love of you all is amazing.

 

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About elizabeth

various things.
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