iiinova — where your digital self keeps evolving

more to sa ybut feel safer now familyhere want sedto wearoff so can discuss w nurse in morning just gonna drift in n out with fam for now 💚

4230

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.

2150

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

8250

nurse gonna caatheterise & midazolam veryconfuse & sleepy

180

nursr comin hope she doesn't say i'm just sleepy becsud it's night time

270

helpiong yes. feel less isolated. still dying but not aalone

260

i just feel like i'm going to die

860

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.

2110

and since i'd had the driver paused all night, i hadn't had my meds, & felt terrible. so she gave me all the stat doses she could (namely morphine) & i drifted off for a nap. i've been napping today & i do feel better.

090

yeah! & this nurse was the other palliative specialist nurse or whatever (i cannot with their job tities) who'd come for a meeting by amazing coincidence, so i managed to tell her what was up.

020

ok so the nurse came to replace the syringe, said the battery's almost dead & sometimes this happens. the cyclyzine is crystalising. basicallly harmless, but she wanted to replace the line with a fresh one anyway.

270

thank you! i felt gaslit all night.

020

they came, said they can't see anything in the line, restarted it, & gave me stat doses for the meds i missed while i had the drivers paused. ok but... you really can't see it? it doesn't look clear to me, it looks glittery or something. well i'm falling asleep regardless.

A clear plastic tube with white-ish specks floating in it, on a black background.

A clear plastic medical device, with a clear plastic, tube with white glittery specks floating in it.

230

ugh. the longer the driver is paused, the longer i'm going without my meds. this is gonna be a shit night.

230

we all have to die someday, so it might as well be today! like literally today. right now. all of us. human extinction. why not.

these people really wanted me to keep restarting this thing, giving me an alarm every hour with sparkles in there? get to my house so we can actually fix this & i can go to sleep.

1100

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.

1110

sat here trying really hard to come up with... some kind of... anything. but it's just shit. it's all just shit, cos *sighs*

170

it's delaying the inevitable if you are a poor & the service is free.

170

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

2120

you know, if i were rich, & could privately put myself together a ragtag medical & nursing crew willing to keep the obstruction from killing me, until some other complication could instead? tpn is how i'd do it too. worked a treat while i was nil by mouth after my rupture & resection. alas.

160

if an iv cannula is beyond them, then a cvc or port definitely is. and it's not just the installation, they won't have anything to do with its use or maintenance either

i watched her make endless phonecalls to hook me up with various services & supplies (including the belated ng stuff) during which she sighed, tried not to scream & was refreshingly open about how useless & frustrating the system is. i prescribed a disgustingly decadent bath with bubbles & candles.

070

[food] we agreed that since i'm still peeing, i must be absorbing some water. so she's going to try for the millionth time to get someone to prescribe a supplememt i might actually be able to absorb. this time fortijuice. if *any* of it makes it past my stomach & gets absorbed, it's a win.

160

yes. yes, i'm fully aware of all this, but thank you. going to unfollow and mute for unsolicited medical advice now - i normally block for this as noted in bio, especially if someone does something like gives me a panic attack over it, but you were genuinely trying to be helpful 👋 no hard feelings

010

(i mean your message specifically, had me worried, not about my nurse, just about what info i'm allowed to have about my care. but i do feel better now) 😮‍💨

210

oh, thank god. thank god. that's such a relief, thank you. i was worried for the state of my care.

110

i don't mean to sound like i'm calling on anything, i was just starting to panic & need clarification - it sounds like the answer is you're not sure, which would be completely fine if true??

110

wait, what? are you saying that my palliative nursing specialist - the person who represents the service responsible for helping me die at home - is not allowed to talk to me about dying at home? why have i not heard this? or are they not supposed to tell me that they're not supposed to tell me

right, she's my mum! & my carer! they consider her basically an equal part of the team

040

are we being mean?? like should we cut them off at the beginning or let them keep embarrassing themselves? it's so fucking funny 😭

[alcohol] she's proud of how much whisk....otch knowledge she's gathered from her partner. not the local one - the one whose place she's been refusing to go to because she needs to be here to take care of me. & i never have the need to ask for her sage wisdom because no drinking for me

060

[death, food] maybe they think/thought they had to get me on a wild goose chase, working our way up to digesting solids etc., because i'm too stubborn to give up. so maybe she was just uncomfortable hearing it from me because she didn't know that i know.

290

just figuratively rolled her sleeves up & ran off. so that was way better than just ordering some myself. 👍

160

[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.

1100

it's ok, i understand this was a tough conversation for the person whose daily job this is

040

she's been so good over all. and we had candid moments, even before & after this talk! but maybe has some odd training she can't quite overcome in this area. i was speaking quite steadily & calmly to her, maintaining an nt level(!) of eye contact, & she just couldn't reciprocate

[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*

3130

except she apparently doesn't know that all that was for my stoma, & all this is for my ng tube, totally unrelated. like they haven't been a pain just for the stoma, now there will be constant confusion on their end, with people like this to deal with 😐

170

she's literally just looking at a record that says they've called to ask what i need in my routine delivery, i've said i have plenty to last until next one, & now i've run out & i'm asking them to go out of their way to bring more in an emergency delivery.

so, funny story. ng stuff is handled by the same private company who handle stoma supplies! so they already have me registered, & when nurse called them to organise my first delivery for my week old tube, the lady said in a shirty tone "every time we've called to ask, they have't wanted anything!"

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.

1120

i'm glad she's communicating, doing little things like responding to my bell & fetching me water, & she even left the house last night to have dinner with her local partner. she's making progress. that seems like a good note to end on.

050

she's becoming overwhelmig. i don't have time or energy to waste on my sister's bizarre bullshit, so i'm going to do everything i can to just ignore it. i may quote the odd bizarre comment, without a thread trying to analyse it. but i need to focus on what matters. ✨me✨

2120

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.

1110

she's abandoning us!! 😖