i got out of hospital on saturday, with my new, exception accessory: a colostomy. essentially, the doctors went in with keyhole (thanks guys), yanked some bowel to the surface, did some cutting, and sewed the bowel to my skin, slightly below my navel, to the left. poop comes out. it’s… it’s an experience. i’m getting used to it, i guess. i’m not yet excellent at the intricacies of bag changing, or of managing the skin around the site. it’s messy. it’s a level of gross that i’m not going to post pictures of, because, well. it’s not just poo as an abstract, it’s dealing with it in a very different way. i could talk a lot about the nature of the abject, and controlling the uncontrolled through intervention.
the tumour couldn’t be removed. essentially, it will make no impact on my life expectancy, as we’re in a race against time with the tumours in my liver.
it is invasive. it is confronting. it is unavoidable. i will adjust to it – a lot of people have stomas, live normal lives. i’ve been told that a lot. i guess what i struggle with it that this stoma didn’t save my life, really. i mean, in one sense it did – a bowel obstruction would have killed me – but the intended outcome of this wasn’t to rid my body of cancer like we first thought it would be – it is to put another plug into the leaking boat that is my body.
this is a metaphor i used on facebook, and i think it is apt. and as time goes on, there is more leaking, more water flooding in.
the surgery, this time, was an emergency. there was a wait to plan it, but there was a short one. i was on a liquid diet for over a week, and i had two blood transfusions, four plasma transfusions, one platelet infusion, and an injection in my upper thigh to stimulate bone marrow production of white blood cells (you cannot transfuse white blood cells, i think?). plugging up those little gaps, as fast as we could. i was on antibiotics from when i first entered hospital, my maintanence pain killer is fentanyl, and i got through it surprisingly well. the surgeon said the day after, ‘wow, you look much better than i expected you would.’
this was reassuring.
we – alex and i – are almost definitely going to move to melbourne. this is a bitterly difficult decision. i love my medical team here – i feel sick every time i think of changing oncologists after a year and a half building the relationship i have. i love my suburb, but there’s simply no way at all that we can stay here – financially. melbourne? we can be in nice places, close to cafes and the beautiful public transport. there is support there.
one of the things that is most important to me sounds trite. but a few months before i was diagnosed, my best friend told me his partner was pregnant. i cannot even describe how i was excited for them – for the world – to have this little piece of beauty, from two of the most incredible people i’ve ever met. it kept me feeling upbeat some days during treatment when everything else was complete and utter misery. i got to see them both just before treatment, when i didn’t know if i would ever see them again, if i would live to go to melbourne one more time. and one of the most bitter things i realised was that i would never get to see their child grow up. no first day at school photos. no graduating from primary school. no chance to be an adult who spends time with a child – an aunty of sorts. it was robbed of me. if i move to melbourne, i don’t get that back. i don’t live long enough to see her start school. but i get to see her toddle around, i get to read her books, i get to have long talks with lachlan and liza about the world and everything, we can get hotdogs and eat treats, i can go do the park with them. i get to spend time with Dom, who i’ve mentioned before. and i feel desperately sad to be leaving my loved ones in canberra -which i’ll write about in another post, but i just.. i feel like i need to do this. alex also wants to do it – she’s a native canberran and every canberran comes to a place where they need to move (in my own personal world view and experience).
and i think about that, and i think about my other friends in melbourne, and i think of how i’ve always wanted to live there, and this is a thing, a little thing on my list of stuff i want to experience, that i can experience now. i get this chance to live somewhere else – to live in a third city, and get to know what it’s like there. brisbane, canberra, melbourne. it feels good to me.
there are the trivial things like coffee shops and cinemas and music and bookshops, which aren’t really that trivial when you know that clock is ticking. i get some sort of joy out of these things. new restaurants and completely bonkers food items in the morning. a courtyard with the fig tree from alex’s parents’ house in canberra that had to be knocked down. a garage for alex to work on her bikes. you know, these things are good. we are incredibly lucky that i can do these things, that these are dreams i get to see. maybe i never would have done these things without cancer. i don’t know – no, i really don’t think it makes cancer worthwhile. i can’t think of anything that does.
when people say everything happens for a reason, and that i have grown from this, i feel white hot fury on behalf of every other person who has passed away from cancer. i feel this from my gut, for my friend who passed away recently and i still feel too… too much… to write about it. there was no reason. fuck the reason. there is no reason behind any of this, and anyone trying to tell me that my body falling to pieces, one chunk at a time, one blood test after another, one huge bruise followed by more injections, followed by waiting for the scans to show it’s grown, it’s spread — that there is a reason behind this, i despair of whatever monster feels that putting people through this is just, or reasonable. i understand that some people need that reason – need to think that there is some sense in the universe, and i respect that, but you know, right now, as i wait to take a bag of shit off my abdomen, take a bundle of pills, reattach a fentanyl patch, and inject myself in the thigh with a blood thinner, each shoved in, trying to forget that the ship is sinking, it’s hard for me to accept any kind of magical thinking that makes this reasonable.
this isn’t an opening for a theological discussion guys. if i want one, i’ll approach you, k?