• week 1
• week 2
• week 3
• week 4
• week 5

week 1 (day -1 to 7)

day -1 - 1

• DAY -1: arrived at hospital. lots of paperwork and organizing and even more waiting. met my roommate.
• DAY 0: surgery day! wasn't allowed to eat or drink before the surgery as always. when i woke up i had apparently ripped out a needle from my hand (i do not remember doing that) and was just in a lot of pain.
• DAY 1: i was sleeping a lot and still in a lot of pain. also had bed rest

day 2

i was finally allowed/able to get up and grab my laptop, so now i can report live from the hospital.

i had surgery the day before yesterday and today is the first day i'm feeling more like a human. as far as i know everything went well and is healing like it's supposed to, but as always i'm in more pain than expexted (and/or the pain medication works worse than normal) so the first two days were just a lot of pain until they upped my meds. now it's pretty ok.

i don't want to go into details, but this is by far the roughest of the surgeries i had. which makes sense - there is a lot going on. i really hope this is the last surgery, and that i don't need corrections or something like that, but there is no way of knowing and i'm trying not to dwell on that. for now it's just resting, ignoring the pain and combating the boredom.

day 3 & 4

[i don't really remember. i think i was mostly resting? but i do recall that the higher pain med dosage worked, so i was in less pain at that point.]

day 5

i have severely underestimated the amount of sensory issues that come up with this surgery. everything is sticky and damp and itchy and holy hell, the smell is the fucking worst. i wasn't aware that apparently the bandages stay on for at least five days in a row! without changing them! it's awful! and because today is a sunday and tomorrow is a holiday, i have to wait until after that for them to finally take them off.

i'm so overstimulated. if they tell me i'll have to wait even longer than that, i'll break down crying. or screaming. or both. i still might.

deep breaths. through my mouth because i. hate. that. smell. sorry, i'm tense and in a bad mood.

besides this mess, it's mostly ok. pain is manageable at the moment, but they just lowered my pain meds so we'll see if it stays that way. mobility is still pretty low, but i can walk around for a few minutes - standing and sitting don't work nearly as well. my roommate is nice and i like his company, which is definitely a plus and yesterday i even got a visit from a friend! it was great to see them and have that feeling of familiarity and safety. that helped a lot and i appreciated it. also, they brought some snacks :)

i'm so looking forward to going home. it might be in two days, it might be later. i don't know and i don't like that uncertainty, but right now i'm trying to get through one day at a time.

day 6 & 7

• DAY 6: i started with four tubes, and as of today i'm down to two. finally. maybe one more will get removed while i'm here, or maybe i'll go home with these two still attached.
• DAY 7: my roommate got released today, but i still have to stay three more days (or like, 2 full ones and the next day i can go home). but hey, i'm finally free of the bandages and i got to see my result for the first time! also friend visited again :)

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week 2 (day 8 to 14)

day 8 - 10

• DAY 8: got a new roommate.
• DAY 9: overextended myself. i'm getting more mobile, but it's still not great. would do good to remember that.
• DAY 10: got released! they were surprisingly quick with all the paperwork. i was handed a big bag of medical supplies, a check up appointment in 2 weeks and sent on my way. the way home sucked. normally i like train rides, but i still can't sit very well, so it hurt a lot. plus i was feeling very weak and exhausted, but still had to move my luggage around. don't recommend traveling alone, via train and with all your luggage after a surgery. friends picked me up as soon as i was in berlin and helped me get home.

day 11

first full day alone. obviously i immediately overextended myself by going to the pharmacy and a store to pick up more supplies (i though i would have enough for at least the first week but nope). also i'm way more freaked out and paranoid than i expected. it's surprisingly scary to be the only one resposible for what is still a big and fresh wound and i don't even know what is considered normal or not. i just want everything to heal well because i don't think i could do another surgery right now (or in the close-ish future).

this is all very overwhelming. i hope it well get better in the next couple of days when i've had some time to get used to the new situation.

the surgery area is feeling weird, but i don't know if that's new or if i'm just now noticing it because my pain medication level is way lower than it was in the hospital. i was realeased on a friday and had to travel for hours, so when i got back my gp was already closed, so i have to manage with over the counter stuff until i can get a prescription for better stuff on monday.

day 12 - 14

• DAY 12: apparently evenings are when i get the most worried. also, it really really sucks when you can't sit due to surgery and can't stand for long because of pots. so it's just a lot of laying down, which brings back pain, boredom and nausea.
• DAY 13 & 14: it's not going well i think. i got an extremely unhelpful e-mail from my surgeon after i asked about my wound seperation. the answer basically boiled down to: "no, that's not normal, but oh well, there's nothing to do. i'll take a look during the control appointment." the control / check-up thing is in 10 days. which feels very very long when part of your body feels like it's literally falling apart.

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week 3 (day 15 to 21)

day 15

this morning i had a very unpleasant and slightly worrying surprise.

so i called some doctors and was scheduled for an appointment tomorrow! which is a big relief. i hope they know what's going on and can help.

day 16

well, this was a day. i went to the doctor and while i had to wait for over 2 hours and was in a lot of pain from sitting, i am very glad i went. turns out i have a "necrosis cave". that's bad. they did some wound-care and holy shit, that was one of the most uncomfortable things i've ever experienced. also painful, but the main sensation was something different that i currently don't know or want to describe further.

i also got my blood drawn so they can check for infection markers and if they are too high i will have to stay stationary. either way i have to go back tomorrow and we will see if it's "just" gonna be a daily trip (which would be bad for me energy- and fatigue-wise) or another hospital stay.

oh, and even when this is healed (which i think takes a while) i will need another surgery.

i am so exhausted, both physically and mentally. this is way more (in a bad way) than i was prepared or ready for.

day 17 - 21

kinda all went the same:

• wake up even before my already too early alarm clock, be way too tired and grumble frustratedly about the catheter-night-bag, because it never seems to drain as much as it should
• get ready, take pain killers, prepare my bag and my wheelchair
• take two busses to the hospital
• draw a waiting number and wait for somewhere between 15-60 min
• get called up just to be told that it's going to be a while until the special room is ready, so more 30-120 more minutes of waiting
• my wheelchair is the only thing i'm able to sit in for more than 10 min, but by that point the surgery site hurts despited that
• get called up for real this time, walk/roll through the station to a really scary looking room and get told to undress and sit in the ob-gyn chair
• doctor arrives, takes 1 white gauze and 3 green gauze strips out of the wound cave (if non of them have fallen out during the previous 24 hours), then flush/wash it, remove any visible dead tissue, clean the surrounding area and finally put new gauze back in
• throughout all that i'm trying not to cringe and jerk (you don't want to that when someone has metal instruments like 5-10 cm deep inside you and your open wound), so i'm just cursing quietly and when it's done everything is overly sensitive, feels uncomfortably full and tight and often there are stabs of pain
• the way home often takes longer because walking is slower and more painful (and my arms are too noodle-y to propell myself with/in my wheelchair)
• if i have time and energy, stop by a grocery or drug store to get some food or medical supplies
• get home and fall into bed

that process takes anywhere between 2 and 5 hours and the rest of the day i'm in my room, mostly laying down and trying to find something to do that doesn't require mobility, sitting or concentration. it kinda sucks.

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week 4 (day 22 to 28)

day 22

i don't like having a catheter and it's especially frustrating today. it's constantly getting clogged and can't drain properly. at the check-up this morning they said they might exchange it tomorrow, which sounds scary but is probably a good idea. the one i have isn't really meant to stay in very long and under normal circumstances mine would have been removed in two days.

day (23 -) 26

good news: don't have to go to the doctor daily anymore! bad news: gravity also applies to tamponade-gauze.

healing is going well, so the intervall between my doctor visits can be increased, which is good. the doctor was kinda ambitious tho, so they went from 24 hours to 5 days, and i don't quite know what to do. the gauze strips that were supposed to be (and stay) in the wound, fell out the very next day and i don't know if it's ok for the wound to be empty that long? well, i hope it's ok, because i wasn't able to reach them over the weekend to ask and because it's not an emergency, so i'm not going to the emergency room. that would feel silly.

the whole thing is stressful and exhausting but this is a really absurd problem. next appointment, i'll try to insist on getting an explanation and some guidelines on what to do. it would be great if i could do some basic woundcare myself. the tissue isn't actively dying anymore (hopefully this weekend won't change that) so i think that should be doable.

tomorrow is monday and even tho i have a scheduled appointment on tuesday, i think i'll try to call and ask. my "i don't want to annoy and bother people if it turs out to be fine" is still arguing with the "better be extra cautious with this wound" and i don't know which side will win.

day 27 - 28

• DAY 27: woke up wit some stabbing pain at the suprapubic catheter area, no idea why. didn't have to call the doctor and ask about the gauze falling out because they answered my e-mail and said it's fine. had a regular doctors appointment tho, but it was only to renew my "can't go to work due to medical reasons right now"-thing.
• DAY 28: appointment went well and apparently everything is ok. so yay, the longer intervall works, but i got some homework. from now on i'll have to clean the still living part of the new urethra by inserting a single-use catheter and pushing saline solution through it with a disproportionally big syringe. that should prevent it from growing shut or getting too narrow and i have to do that two times a day.

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week 5 (day 29 to 35)

we'll see how much new stuff there will be. i expect things to kinda stay the same for now, so i might increase the time-windows for these.

day 29 -

• DAY 29: finding the correct tube angle for the rinsing/washing thing is surprisingly tricky. turns out it's kinda hard to see and i don't have a third hand with which i could hold a mirror.

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