The Hairy End: or, the bad shit.

i’m sorry for all the people in my life i haven’t had a chance to already talk to this about in person, and this is sort of why i’ve been quieter on social media.

but my treatment, and treatment aims have started to move into the next phase of stage IV cancer, and we’re at a point where we can start talking a timeline.  i am now, without question, terminally ill – which means, my  life expectancy is under 12 months.  for the first time, i asked my oncologist straight out for numbers, because he said that a point would come where he could start estimating. that point is now.  his ‘worst case’ estimate (all treatment failing now) is 3 months, and his ‘best case’ estimate (all treatment working for as long as would be expected) is 12 months. the reality will lie somewhere between those two figures.
it’s my birthday soon. i’ll be 32.

autumn is my favourite season.

i have hundreds of books i haven’t read, fleeces i haven’t spun, wool i haven’t knitted.

there are people in my life who i wanted to spend years with, to grow old with, to just be with.

there are all those endless things we leave unsaid, and there is so little time to say it.

i really, really loved my job, and my career, and the path my career was going on.

one day, i wanted to go to japan to go to all the places famous because Kawabata went there.

gerald murnane has an amazing archive, and i will never get to work with it or see it, or meet him.

i wanted to grow tomatoes, have pet sheep and goats.

i wanted a rescue greyhound.

maybe i could have hiked on a glacier in Iceland.

i wanted to go to all ten top restaurants in the world. i still want to do the top ten in australia. maybe i can.

how do i divide this into a bucket list or some inspirational thing about my will to live?  how do i factor this in with the fight narrative.

FIGHT. fight. fight the cancer. Fight the Battle.  Stand Up against the BATTLE.

what am i fighting for, guys? what am i actually fighting? ‘fighting’ cancer doesn’t mean i’m going to stay alive – calling what i do a fight upsets me. i can fight against the reality. i can fight against the simple knowledge of what is happening in my body, and that we only have a few limited options left as to how to stop it. i can fight and grapple and struggle and argue and say i have longer, say i will BEAT the odds.

i lose nothing, i beat nothing, i fight nothing. i have incurable terminal stage IV colorectal cancer with secondary tumours in my liver and my lungs, and other than taking the chemo i have, and doing what my doctors say, there is nothing i can do to stop this or slow this down. it is a simple and harsh and sharp and ugly fact.

one of my worries is that i will get brain secondaries, and i will lose the capacity to communicate.  bone secondaries are very, very painful, but are also unlikely to take over before the liver gives out.  same with the brain secondaries.   i am still afraid.

i am still afraid.

it’s another one of those times where i feel like i should be standing on some sort of podium listing off the inspirational things i will do, the places i will go, the achievements and the sacred moments i shall experience in my final 3-12 months. but i feel fine. how can i place the feeling of ‘i’m just a bit tired’ with ‘you have under a year to live?’

i’ll let you in on a secret. sometimes? after i’ve wiped the skin around my stoma clean, and injected myself with blood thinners, and taken my ten before bed tablets – or when i end up at the ER, yet again, because something broke in my unstable body – or when i just stare at my staircase in horror and exhaustion? there are times where i now see that there will be a point where i choose to stop treatment.  because this still only ends one day. no amount of pushing chemotherapy until the end is going to cure me.  and the whole idea that it is not fighting, or it is surrendering, or that i am on the verge of losing my battle makes me feel sick to the stomach.

this is a very different set of feelings from the initial horror and grief. it is a slower grief, a more tired grief, a grief that’s been closer to death now, and knows that i am too.

i’ve never been one to hope for that miracle. i know that it is almost definitely not coming, that the freedom from this disease isn’t going to just happen out of nowhere, out of some new drug or some new treatment.  i’ll see. i’ll see how hard it is to deal with side effects on any relevant trials, and i’ll see how much i want to take, and i’ll see what matters most to me.

there are a few things i need to write. i have three commitments i am eager to make, and open to being offered more, but i’m not sure the stress of actively pitching is going to add to my quality of life, when i can post here.  but if people reading this want me to write for them, as i would be here, i’m all there for that.

i’m flying to melbourne on thursday to look at a place. i don’t want to look at the ad too much, because i want it so desperately and the fact we might not get it is extremely painful to think about. i have to pack up my house, my objects that my hoarder brain clings to, and i need to work at shedding as many of them as possible. i need to cull things i love that i just won’t have time to use.