iiinova — where your digital self keeps evolving

nice. i'm now permanently cathaterised so the pee comes directly frrom my bladder as it fills. tell how hydratated iam because what colour it is (light brown but i'm drinking diorolite, taste shit) same with my stomach because ng tub.

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brother & wife comnh hometoday, all family gonna be here with me

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nurse gonna caatheterise & midazolam veryconfuse & sleepy

guppy @crimefish.bsky.social · 09/10/2025

my symptoms are really terrible atm. something blocking my urine earlier yesterdaay, so had to pee catheterised. they said it was probably just sedation from previous night's meds. had to call night nurse just now to assess extreme light headedness, which is getting worse, not better.

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mum: my daughter's driver is beeping & the tube is cloudy. hub: does it say occlusion? mum: yes. hub: i can tell you how to restart it? mum: she's been restarting it all night. she stopped when she noticed the line was actually full of particulates. hub: ...we'll send someone.

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the number of times i've thought 'but we have the technology!' only to remind myself i've already had the conversation with them, & they said something like iv fluids would only delay the inevitable, which i said is something we all do by breathing, round & round. palliative just isn't here for that

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[alcohol] i also assigned my sister a job to help me out! i want to eat my shaved ice slushies, & i want to sip my ice water as my cubes melt. but i also have juice i don't want diluted. so i thought she'd like to pick me out some whisk...y stones. you know what i mean, some scotch rocks.

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[death, food] me: yeah, i think this is going to kill me. nurse: *nodding grimly, eye contact with floor* me: the obstruction obviously isn't going to allow progression to solids. nurse: *nods at floor* me: it barely allows water, let alone thicker fluids with fats & proteins. nurse: *nods*

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had a meeting with nurse coordinator & we ended up focusing not on infection but on hydration, nutrition & equipment for the ng tube. we were both satisfied at the end.

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guppy @crimefish.bsky.social · 07/10/2025

our brother's response is "k" i asked him not to be glued to his phone on my account, so from what few messages he's sent, it sounds like he's having a nice comfy relaxing time with his wife & a few friends. which is exactly what i wanted. he's not abandoning anything. he's respecting my wishes.

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my sister has just told me that she's furious with our brother for abandoning us ??? so she thinks the closer they are to me in physical proximity, the more "here for you" they are. doesn't matter what else they're doing or not doing. this could be the biggest breakthrough understanding her so far

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guppy @crimefish.bsky.social · 07/10/2025

*mum opens front door to nurse* nurse: aww, bless you. so how've you been getting on? *pouts sympathetically* mum: yeah not so bad. nurse: any sleep? appetite? gotta keep your strength up! mum: yeah, it's not easy to keep caught up.

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guppy @crimefish.bsky.social · 07/10/2025

this morning mum walked in to see me sleeping bolt upright, & kind of jerking my head & arms. she says she was shaking me but i could only hear her shouting in the distance "KATE. you. are. asleep! lie. down! before you fall & hurt yourself!" but i couldn't wake up & move to put myself to bed

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mum: i never get any sleep on this sofa. 😔 also mum: head touches pillow & immediately begins to snore, before we can do my brother's bedtime routine of making sure my ice & water are full, & everything i might need is within reach for the night. i hope i don't need to wake her for anything. 😔

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my brother's going home to his wife today, & they're going to spend the week enjoying the autumn festival together, which i think is a perfectly lovely idea! i hope they have the best time, because i've kept them apart for weeks & they haven't expressed even the mildest complaint.

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had a talk with the nurse coordinator about how painful it is to swallow since the tube, & she's coming up with a pain management plan. except when i put my ear plugs in, the left one hurt. the hearing on my left's been going muffled on & off. the sorest spot in the back of my throat is on the left

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full house this morning! the precise moment i nodded off, my nurse coordinator & her newly qualified nurse here to learn arrived & got to work. about 15 minutes later the nurse changing my syringe driver also arrived & joined in, all performing different tasks at once, all talking at once.

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guppy @crimefish.bsky.social · 05/10/2025

i just nodded off sitting up, pitched forward & crashed face first into my hospital table. i need to get some real sleep before i hurt myself 🤕

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amazing. [needles] called a district nurse out because my cannula was leaking. so he inserted a new one, & then while struggling to apply the dressing, accidentally pulled the whole thing back out again. & that was the last spare, so someone else has to bring more gear & redo it in the morning.

guppy @crimefish.bsky.social · 05/10/2025

[food] sister's partner has come, & he, her, mum & brother have ordered, ready to eat together in the other room. idk why i thought they'd let me look at the menu to see if there were a drink or dessert i'd like/be able to eat a bit of? i shouldn't have assumed i was invited to dinner tbh

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guppy @crimefish.bsky.social · 05/10/2025

today's death cleaning my brother is helping me with: my collection of irregular choice shoes, which i think i'd like to include in my special precious belongings to be shared on here. in which case you'll be able to ask for them in exchange for a receipt to show your donation to...

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guppy @crimefish.bsky.social · 04/10/2025

she just came in complaining that i'm using all FOUR scotch glasses that SHE paid for & are the only cups she can drink her scotch out of. anything other than glass tastes awful, & the bigger glasses are heavier & harder for me to lift.

sister: whatcha doin? mum: bringing down bedding to sleep on the sofa. sister: is that wise? mum: yes? sister: ok. i... what? help i am so confused is there a problem with mum sleeping by me??

had to start making sure the doors are locked in the mornings to keep the nurses from barging in without any warning, which my nurse coordinator, sighing & burying her head in her hands, says they probably do for our convenience, so we don't have to get up to let them in. maybe we like getting up.

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oh. one of the nurses pronounces katherine as kathleen just due to her accent. so her coworker wrote kathleen while uodating my charts that day. & then other nurses read that & copied it. so now my charts are riddled with the wrong patient name. and it also explains why they keep calling me kathleen

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so today we're doing a spongebath & changing the bed, & then i'm going to try my best to just rest for the remainder. because i'll need my energy for tomorrow when my sister in law visits!! i'm so looking forward to her. i haven't seen her in ages, & my brother hasn't seen much of her either 😔

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guppy @crimefish.bsky.social · 02/10/2025

this morning the nurses somehow consolidated all my meds into a single syringe driver instead of 2, & it seems like they didn't have to lower any of the doses to do it! so now i only have one of those & the ng tube to lug around & get tangled up in, like charlie brown trying to fly a kite 😊👍

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like how do i tell her i'd love for you to spend more time in this room with me, but first i would need you to: 1. please put your vape pen down 2. please shower off the urine scent 3. please don't put the scented clothes you were just wearing back on? otherwise i'll just be gagging the whole time

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!! my sister just came to stand & stare at me from the open doorway & say i love you! it was drowned out by all the pain & exertion sounds of me desperately trying to use the commode chair before bed so i don't have to wake anyone to help me pee in the night. chef kiss timing & obliviousness

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[emet] officially too weak to use the toilet! 🥳🎉 maybe once we get some calories in me i'll get that back, but in the meantime i'm gonna have to break out the commode chair. at least the vomiting's over & i use an ileostomy, so there's only pee to force my family to deal with. i hate this. sucks.

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mum's informed me that since i've been in palliative care, my sister stopped her usual routine of roughly evenly dividing her time between staying here, & staying with her partner a couple hours away. to be here to support me, i guess? idk how to say i hadn't noticed her doing anything differently

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[weight, food] did weekly blood sugar check & first weight check, & thanks to sipping on squash instead of water, my blood sugar's in normal range. 😮‍💨 my weight has gone from 55 to 40kg (120lb to 88lb) with the obstruction, which is uhhh not super ideal

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[alcohol] sister has suggested that since i've had autoimmune liver disease since i was 18, & never really had the chance, i should get into drinking acohol now. we're still working on keeping water down & getting my calorie intake above zero! alcohol wold wreck me, kill me faster & add nothing

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i slept again!! got a few hours in! [emet] i drank as much water as my throat needed overnight, because now i know it won't make me throw up, & the ng tube's been working, because the bag is slowly filling up with diluted bile & stuff. i don't want to jinx anything but *stares in serene silence*

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mum keeps calling my stat dose nurse visitors the "mighty morphine power rangers"

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i wish more of the nurses that call back prior to arriving to give the stat doses would just say "you requested a stat dose, right? do you still need it?" & not something weird like "i understand you've been experiencing some discomfort. your chart says you've taken this drug before."

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[death] idk why i thought dying was a thing my body would be able to just DO. like by default. but the whole process is actually taking an inordinate amount of work & i reckon i've had quite enough thank you 😔

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the nurse used far too short a line for 1 of my syringe drivers. so i've miraculously been able to get comfortable enough to fall asleep twice! only to be woken twice! by an occlusion alarm, because the line's being pulled taut. luckily i know how to reset it so i don't need to call them, but ffs

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my sister has picked out her first slowstitch project & has asked for my experienced (i've never done slowstitch nor do i sew) advice! project: sewing some summer tunics out of a cooling blanket for her & her partner. her question to me: is that a foolish idea? my answer: that's not slowstitching

[emet] resetting the syringe drivers back to their higher levels earlier today has been a vast improvement. not only did i spend the day free from the worst of the symptoms, a break from the nonstop puking has allowed me to rehydrate a bit, so i no longer feel like i'm about to die any minute

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[emet] should probably say for important context, the nausea can be prevented, but not the vomiting. my body *has* to get rid of the digestive fluids that can't pass the obstruction, & it has to do it regularly. it's just a matter of the safest, most comfortable & sustainable way to help it do that

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which btw is exactly what they said the hospice is for (unless of course you're going there to die). just staying a few days to get symptoms back under control under closer supervision than at home. we could have done that. & maybe we still can/will end up doing that!

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awful weekend symptom wise, but we had our meeting this morning & agreed that it was just too soon to lower the dosage of buscopan in my syringe driver, & that it needs to go back where it was to control the cramping again. that's it. that on its own could solve the whole thing. was avoidable.

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