i love this unrelated dorky photo of me and Alex.
brief update: still in hospital. planning still in place for getting me home. had leg & foot massage which was tremendous. had people i love visit. i ate a huge lump of fruit cake and two cupcakes. my stoma is now so loud you can hear it rooms away.(i write this between closing my eyes and flickers of awake. i am not proof reading, so it’ll ramble.so it’ll probably read a lot like any conversation that anyone unfortunately gets trapped in with me for the present time.
i had severe ankle pain this morning. it seared up my legs, and it took my- self away. it was as though a thick cable had been cut open, and the ends of each wire were on fire. i begged for palliative care. i find it interesting that this is my instinct now. i don’t want to see another scan of my abdomen. i want to sit back. i want the adults to be in charge. i want to – i need to – accept the changes that have happened across my three hospitalisations, they have been long-stays. a week or more. i sometimes get this thing where i wonder if it is just easier to keep me here; that’s garbage, because ‘they’ want a bed taken up with someone who needs it. and that someone is me. and i now choose where i go in the future when things go wrong.
right now, it is still oncology. right now, i still take more pleasure than pain rom my life.
the varicose veins are starting to appear all over my abdomen now, and i’ve put on a lot – a LOT – of weight from the dex and random eating fixes. it’s a weird thing to see a face in the mirror which is so similar but different; once nurse commented that i must have had nice cheekbones under all the fluid and fat.
i had a good day. a busy day of doctors (a Lot) of visitors, of thinking and not thinking. i have plans to do the important things. i am thinking of more important things. i am trying to let things go a lot, and it’s funny but it gets easier. i just dozed mid sentence writing this, waking up an hour later. i dunno, guys. i’m in a good place today, i was in a bad place yesterday, and we take what we get. my doctors remain like anchors, like glowing quiet lights, like metaphor like metaphor.
the last week has been a haze: i don’t really know what’s happened or when. my body seems stronger each day. i look at star charts i got with my box of FeelLikeNiceCosmetics. i know my body so well, and i know that, with no malice, there are more things going wrong, creeping away, shuddering in the background. i know that putting what i need, those i love, the things i love first, is vital right now. my body and i. me and my body. it is a strange place i am in, that i went, and i feel as though i am coming back from it.
moments. right now, i can still taste banana, nuts and the density of a sweet fruitcake. i can see the odd crumb on me. the constant buzzing of my bed inflation makes me think of the backdrop of some sort of noise gig, which makes me think of going to The Forest for Audiopollen in brisbane (a sound/noise event i used to love in the early 00’s.) and i think about trees, and i think about the teddy bear my social worker bought me, and i think about my medical team and how much i care about them, and i think about you all reading this, and i rub Ultrabalm into my tattoos, watching them glow and loving these parts of my body (thanks as always to Seventh Circle Studio & Manners Tattoo which are the ones that always get the comments), and claiming them, claiming these pieces of self.
i want to give things to people. it’s hard to resist the urge to do this, constantly, but i don’t know what STUFF means now. i look at cute clothes and i see myself wearing it once. stuff crumbles. my body crumbles. all that matters are the things that we hold with each other, between each other. tell the people you love that you love them, even when the words feel like you will fall from a cliff from the fear of using these words and this language.
i use this stuff that smells like a forest before i change the bag at the moment. i use pain killers properly (ie, i hurt a bit. i identify this. i call. i get a pain killer. i stop hurting). i am trying to not fear them, think they will hurt me. i am trying to remember that the thinking that matters is those moments when you are grateful for ice chips in an ER, and grateful for each moment you’ve had. because i am so tired of the anger. it’s hard to be angry so much, and on good days, i feel like i can breathe out the anger, breathe in the gratitude, and cycle over this. gratitude for this extraordinarily normal life i have lived.