guppy

As we sort things out at home I'll be checking in periodically to post some things Guppy wanted shared, and make sure a selection of their finer wares make it to good homes.

If you need/want to get in touch with me for any reason at all, you can email me at james [at] jsrn [dot] net

-J

Thank you all for being so lovely. It means the world.

-J

[death] Guppy passed away last night at around 11PM. They spent the day with family at their side, and the last thing we did before they drifted off to sleep was settle in for a big group hug and tell each other how much we love each other.

They were so, so loved.

-J

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 💚

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.

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

nurse gonna caatheterise & midazolam veryconfuse & sleepy

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

yes they're great

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

i just feel like i'm going to die

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.

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.

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.

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.

thank you! i felt gaslit all night.

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.

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.

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

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.

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.

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*

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

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

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.

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.

[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.

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

(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) 😮‍💨