sometimes i have much higher expectations of what i should be doing, compared to what i actually can do. this is frustrating for me, and for people around me as they watch me struggle to manage basic tasks.
tomorrow it will be three weeks since surgery. it is understandable that i might be having some issues with mobility and energy. i’ve just restarted chemo – the hopefully amazing TAS-102 – and i am exhausted. i think just generally physically and mentally and every other way exhausted. i want a break from everything, just a few days of silence somewhere where there are trees maybe. i wish i liked camping, but camping isn’t super compatible with a stoma. and yes. i know. people with stomas can do everything people who don’t have stomas can do. i’ve seen the ads on the stoma journal and the magazines of products. the ads are remarkably like unisex tampon ads. look at me! running on the beach! while i poop into a bag! i can run AND poop at the same time! we’re all holding hands, sharing the experience with our fellow bag shitters, smiling in shirts that are tight, and bafflingly, not showing any sign of the bag. life is a mystery, guys.
feeling tired is terrifying for me, because it is a reminder that my cancer has indeed progressed. not this tiredness, maybe? but i’m lethargic at the best of times. i miss those brief bursts of energy. i remember walking to work every day and feeling fine about it. not counting every breath.
my fears about death are no longer irrational. they are realities i am starting to stare at the face of. when we talk pain killers, i’m now referred to palliative care. we discuss in depth the choices of dying at home, or dying in a hospice. not dying of this cancer, right now, has ceased to be an option we explore because it is futile to even think about it as things currently standing.
i stare at my stoma several times a day. it is going ok, i guess, only i feel frustrated that i can’t get it perfect, and there’s still some seepage, and i’m a FAILURE at stoma-ing. which isn’t true. there are stitches around the base of it, which will dissolve when the wound has healed. i can see them slowly fading on the marks on my abdomen and pelvics where the laparoscope entered.
getting my insurance payment through was far less of a good feeling than i thought it would be. we have the freedom to pay off debt, and to sort out cash flow sensibly. right now, we – my financial planner and i – are working with a consideration of 1 year to live. that is a likely estimate, though it could be either more, or less, depending on my response to treatment, the growth of tumours, new ones appearing, endless tedious variables.
looking at properties in melbourne is starting to make my eyes blur a little. normally i love that sort of thing, but today, i stayed in bed eating easter eggs and ginger bread until i felt slightly ill. i ate a pear. i need to gain weight, badly. i didn’t eat solid food for a week, so it sort of makes sense that i’m struggling to keep weight on. i’m on one appetite stimulant, about to start a second, and then there’s a third we can try after it.
there comes a part in everyone with a ‘life limiting’ (god, i dunno if i hate that term or not) illness where you start questioning just how much more you can take. this isn’t depression talking – i discussed it openly with my doctors, and i know very well what depression feels like and this ain’t it. i am tired of the ER visits and the fevers and the exhaustion and the nightly injections timed to hurt as little as possibly on my thighs covered in bruises, and trying to manage the bag of shit that hangs from my belly. i can feel it against my thigh during the day, but it is small and ugly.
it is six months since i was in iceland. it feels like less, and more. as i know, more and more, that overseas travel – that trip i was planning and costing – is no longer an option right now, the more i cling to it, all the little things like dragging my bag that weighed too much through the streets of Vik, of this fae young man with pristine english who served us in a restaurant in Reykjavik, where we asked, slightly drunk, for ‘the most icelandic cocktails you could do.’ of walking on the beach until my feet ached and never wanting to stop walking, the edge of this strange dark sea, the black pillars rising out of the water. of the way things and places smelt – the intensity of the sulphur, the smell of clean clothes after we had a stack of washing done in Reykjavik, of the smell of water in Myvatn after stumbling over a moss soaked lava field. i don’t know, i’m trying to find things to say about my body in the landscape there, of those crisp hills that you never escape with waterfall after waterfall, the slightly different colour of the glacial rivers, the edge of the glacier i could see from Vik which has somehow taken on almost occult status in my mind.
and there is always more that comes with these memories, more and more, those conspicuous gaps i leave from my blog because i rarely involve other people in it, or i am careful when i do, because i am careful by nature. but i am left reeling by what i have and will continue to lose, and how loss is not something i can hide from, or run from, or pretend is anything other than an inevitability.
i feel gaunt right now. i’ve lost more weight, and my wrists look fragile, and all of me looks breakable. my cheekbones are stark, and my eyes are looking slightly too large for my face under my glasses.
i am having a lot of trouble not crying all the time. there is a lot of grief right now. there is a lot of grief and all i can pull together is crying, and i can’t evenwater my plants right now.