Being a Pansy

Yesterday was probably one of my worst mornings in here yet. I again, couldnt sleep until about 2am and then when I finally reached some deep sleep my bladder decided to poke me awake again. And then again every hour after that. I dont think after those initial couple of hours of sleep I slept properly at all. I was just dreaming and dozing about needing the loo. So when the sun had risen and it wasnt a 'getting to sleep' atmosphere anymore, my mood for the day was set- tired and emotional. I cried when the dinner lady asked me if i wanted any breakfast, i cried when laura came in to check my obs, i cried when my surgeon came round and shouted 'ANY LEAKING?' like he normally does (poor guy didnt know what to do, he offered me counselling and then tried to scurry away in confusion). I was a mess. The staff were tiptoeing around me all morning bless them. I honestly dont know what hit me all so hard. I kind of just wanted to be on my own away from anyone so i could pull myself together and get over it, but jobs need to be done and I was having to rear my head in public to piss every half an hour too...

I heard on the grape vine I had been discharged by endocrinology, which would have meant I could go home once this infection was sorted. But I was pissing like a fountain and drinking as if my stomach was bottomless yesterday and that evidently showed my medication to control my fluid levels wasnt right. Which then means im still having endocrine issues and Im not actually clear to go.

I know its trivial in the grand scheme of things but I can't go on the holidays i planned this summer because its too dangerous to be in a hot country if i cant keep myself hydrated and now my family have to rearrange their planned holiday to stay somewhere close by in the UK. I was just so frustrated cause I feel as if this stupid disease is controlling my life and burdening everyone elses. Before my first surgery i was so optimistic thinking that theyd be able to pop it out and then done. Remission. Have to keep an eye on any tell tale signs of timmy returning, but can live a normal life like everyone else. But since being told it was aggressive, that it had spread to the bone and having to have the whole gland cut away at to a point that theyre not sure if it has any function at all I feel as if its slowly consuming more and more of my life. 

I cant be arsed with all these restrictions ! Im gonna have to always be in close proximity of a toilet, always gonna have to be able to access a hell of a lot of water to maintain my intake/output balance, cant be trusted in the heat (as it stands) and i just feel very needy and different from everyone else. Which i hate. I dont wanna be the one that people have to look out for or have to work their plans around. 

Anyway, the endocrinologists are working hard to get me figured out so they can put me on the right medication and enable me to live the same way as everyone else. Whether theyll find the answers soon is a different question but i know theyre trying their hardest. Why have i gotta be so god damn difficult!!! Anyway, the day went on, i saw my nan in the afternoon and my dad and sister brought me nandos for dinner so im going to bed feeling a lot more settled and positive than i was this morning. My fave nurse alvaro is also signed to me tonight so thats made me happy. Good days, bad days. I guess thats life for ya.

Nighttime rambles

Im laying in bed contemplating whether i need a wee or not because i cant fall asleep and its the only thing i have to do. I can hear someone in a room near me snoring for england and while i listen to them choking on their tongue every 30 seconds, i cant help but mentally make a list of reasons i cant wait to get home. (Went to the loo after writing this paragraph, its bloody bed 29. Fast asleep with the door wide open. Id never have thought her to be the culpret... Shes only tiny! but my god shes got some lungs on her... and doesnt the whole bloody ward know it.)

Im laying trying to get comfortable enough to sleep and i just cant with my bra digging into me. But im hooked up to my drip and i dont wanna pester my nurse to unhook me so i can get my arm out the strap because im gonna have to pester him in about 15 minutes when my infusion finishes anyway. I will choose ny battles and I can wait and be uncomfortable 15 minutes more. Its not like im gonna get into a deep sleep in that time anyway... 

Which nicely leads me on to another reason I cant wait to be home... the fact that if im well enough to go home, Im well enough to not need to be hooked up to a drip for 7 and a half hours a day, and I wont need to ask permission to use the toilet or move more than a foot away from my bed. I also wont have to wear these stupid non-slip socks everyone has to wear when I'm on my feet. I mean, im kind of glad because they do conceal the true extent of my crustiness and ugly toes but its a faff I cant be arsed with. Dont even get me started on the tight TED stockings I have to wear too to stop me getting blood clots because Im spending too much time in bed and its not good for circulation. Ive started to boycott them already. Trick is to wear something long enough to cover your ankles and keep your socks on. The nurses will never know. Theres no way of getting round the blood thinning injections in your tummy to stop blood clots though. The nurses are on the ball with that one. But at least it doesnt hurt. It just stings a bit. (but the area that it stings is such a tiny pinprick that if you cant handle it you really need a slap): 

I also wont miss whoever the phantom poop smearer is. Not just skids in the toilet but all over the toilet seat too the past couple of days. I know me strolling out to get the nurse whilr my bowl of piss is still chilling in the loo isnt the most pleasant thing to walk in on but there was shit on the floor this evening. And you can only notice the smears surrounding the toilet once youre committed to the act and already sat on the loo. Honestly. I know youre sick but if you cant clean it up yourself the nurses here are nice enough to do it for you! Were all meant to be in this

 together.

Another thing i wont miss is ward meal times. Call me a hypocrite because ive always said i love hospital food (which i still do) but having to eat at such specific times and being restricted to microwavable meals and trifle gets boring and kinda neausiating after a while. While im in here i can be as demanding as i want and have whatever meal i fancied delivered to me via mum dad sister or cousin within the same day though, and i will deffo be missing that after discharge. 

I think ill miss being a demanding brat in general actually. This call bell opens the doors for anything. Cant be arsed to get out of bed to turn the light off? Call bell. Feel cold and want the windows to be shut and get tucked under an extra blanket? Call bell. Ran out of water? Call bell. It is like having servants in here. The nurses must hate me. But i cant strongly day that i love them.

I will miss the little community they have here too. Everyone is so nice and unjudgemental. God knows what it takes to put up with me for 3 weeks with my dry skin swanning around and having to measure my piss every 45 minutes, but somehow they all do it and with a smile on their face. Nurses definately dont get  enough recognition for everything they do and how much they accomodate. If i could grant them all their wishes i would.

Anyway i might actually be tired enough to try and sleep now. Which i should do seeing as the day starts at about 5:30 in the morning and where my room is it is impossible to sleep after then. Its right next to the entrance, storage room where they wheel in and out the big metal carts of laundry and equipment, all the metal bins that get changed what feels like 600 times a day and the nurses station where they all have to coverse and organise. But hey, free rent. I should not complain. 

PICC Line Happiness

On Wednesday evening, George, the vein whisperer, was called in to see to my tricky little pipes. He managed to take blood from my arm and get a cannula in the back of my hand first try, so the relief from anticipated blood trauma was settled and I was happy I didnt have to worry about that for a bit. But then the good news came! PICC line booked in for the next day!! Apparently it was a struggle and I don't know what nurses were responsible for making it happen, but whoever it was- I hope they eat good everyday for the rest of their lives.

I had to wear the hospital gown and pants again because I'd be going into theatre (sounds more serious than it was) but this time my pants werent paper- the were like some kind of stocking mesh. lol, quite comfy actually. The porter came with a chair... :( I wasnt going to be wheeled down in my bed like before surgery and for my x-ray (Oh yeah sorry forgot to mention that. I had a chest x-ray requested when they knew I had an infection. It happened on one of my dark days where I didnt open my eyes, but I could hear the porter struggling to get the balloon off the end of my bed and flirting with the nurse that had to accompany him on the way down. I thought x-rays were like scans, a bit like an MRI or CT, but they literally place a board behind whatever area theyre looking at and take a picture. Takes maybe 5 seconds for the entire process... anyway, all clear, brain is funky, but chest is good.) The chair isnt comfy or a smooth ride. If given the option, always choose the bed.

I was booked in for 1:30 which was alright timing seeing as the procedure was only meant to take about 15 minutes and I had some uni friends coming at 2ish. But I had to finish my session on the drip and wasnt taken down until 2. I had to wait in recovery to be collected and taken to theatre and being there for a little thing like fitting a PICC line but listening to a man coming back around from a serious surgery in the bay next to me was super unsettling. He was struggling to breathe because of fluid in his lungs and they were making sure he was okay and assisting him inhale his oxygen mask. He also needed to pee but didnt have the strength (been there mate, feel for you). But anyway, I had to wait for half an hour all too aware of the craziness around me when they finaaaally came to get me and wheeled me into theatre. 

They were nice, it was calm, the radio was on as per. They prepped me and set up all the equipment and everything. I had to wear one of those hair nets and I looked like a right twat, but hey just gimme that PICC line and gimme it now!! The procedure took maybe 2 and a half minutes. It hurt less than most of the cannulations that I'd had before because they gave me local anesthetic and before I knew it I was wheeled back to the same recovery room with the same man behind the blue curtain in bay 2. 

...They forgot about me. The time I was in theatre was so short and theyd obviously been busy tending to the man next to me (his name was Brian) that they didn't realise I'd already been and come back. They thought they were still waiting for the surgeons to collect me. Reality was, I was waiting for them to call a porter to come and collect me. Anyway I was waiting around with a bit of a headache just wanting to get out of there and back into bed for another half an hour before they realised. I got so frustrated I was kicking my legs around in the hopes they would notice me lol (spoilt brat since 1994 xox). While I was out of recovery poor Brians bowels had obviously had a bit of a stir and he was begging to go to the toilet. But it was too soon after his surgery for him to be mobile and he had to be hooked up to the oxygen tank so popping to the loo wasnt an option. I felt so sorry for him because he was desperate and trying to maintain any last bit of dignity he had left. They offered him the bed pan and brought over a commode but all he wanted to do was poop in a cubicle privately. At one stage he was wrestling about 5 people trying to escape and in the end he had to give in and use the portable toilet. My heart felt for him but I really wish they just hadnt have forgotten about me so I didnt have to sit and endure the smell of fresh drug poo linger for so long. 

Anyway, the porter finally came and I was wheeled back up to my little blue cave, reunited with two of the friendliest faces and trashiest magazines. Since my PICC line has been fitted life has become ten thousand times easier. I have no feeling of anxiety when the nurse walks past and I'm able to get the drugs that make me feel good again! And me and Sonny can be pals once more because theres no chance of him accidently pulling out this one. Well there is, but that would have to be an almighty tug and I doubt it would ever come to that. Eugh don't even want to imagine that. Disgusting.

Part 3: Another (Hopefully Final) Hump in the Road

So yesterday I finally started to feel able to feel part of the world again. I still hadnt eaten properly since before my last surgery over a week ago, in fact, I can list on both hands all the things I've eaten. A total of 5 nandos chicken wings, a handful of chips, and half a corn (over two days) a few calippos, a bar and a half of mint aero and almost all of a mint feast. And although I felt semi able to function, the thought of having any food still made my throat seize up. But that seemed like the biggest problem which I had to work towards, everything else seemed to finally be sorting itself out.

But as soon as my mum left, I felt a little drowsy and the nausea seemed to get a tad worse. I just got the nurse to turn the light off so I could sleep it off. But every time I was woken up in the night for my obs and other things (blood taken through the right ankle this time), my headache and nausea seemed to be getting worse and by the morning I was feeling terrible again. Weak, drowsy, sicky and a dull ache behind the eyes and a strong ache in the back of my head/ neck. A pain I again, couldnt steady. The doctors came in and checked me out and I'd gone back to the weak murmuring again so that triggered the worry again. They decided to switch back my antibiotics to the full whack powerful ones and give me another lumbar puncture to relieve some more pressure which seemed to be causing my headache again.

Two guys strolled in again, different ones from last time (even though I didnt see them at the time, their voices were very distinctive and loud and I was introduced to them the day or so after, when I could open my eyes). It was clear that one was a fully trained doctor and was teaching the other one. I really didnt fancy this lumbar puncture this time, I didnt have my mum with me and I was slightly more with it so I was all too aware of what they were going to do. After about 5 minutes of preparation it was clear that the student was about to give his first lumbar puncture, with me as the doll. I didn't want it even more. But you've gotta do what you've gotta do, and if hes gonna learn from this, then let him try and do his thing. He gave me local anesthetic, all fine. Done. But then it came for the big boy and he couldnt quite get it in the right place. He was having to scoot around and although some of it was numb, I could still feel what was going on. I coud tell when he hit my spine and I could tell when he'd gone to far. Anyway, wherever that needle went wasnt the exact spot and he wasnt able to get the direct place that he could drain any CSF from.

Clearly in pain they decided to let the other doctor take over and perform it himself. I heard him saying he was just millimetres away but it just practise that helps you know exactly the right spot. They had to start all over again, and anesthetise me again. After being prodded at painfully already, the second try wasnt at all comfortable either. I got a sharp shooting pain down right into my hoo ha which made me wince. He asked me if it went down my leg and i just 'mm'ed while keeping my lips tightly purse. He said it happens sometimes and should only last a couple of seconds. I had that shooting pain (down my actual leg this time) about 3 more times. It was horrible. I dont want another lumbar puncture ever again. I could feel something trickling down the skin on my back too. Whether it was CSF or blood I dont know. But I looked at my bed later and I had a nice bloody patch on my sheets. Minutes after my sheets had been changed. Men and their timing aye.

Anyway. I got the nurse to turn off the lights and I layed, paralysed (you have to lay with your back straight for an hour or so after the procedure) and sobbed under my blanket until I fell back asleep. But then my brother popped in because he was in the building for a physio appointment and it was nice to see a comforting face. Shame I couldnt get that neck massage he promised though because I had to be on my back. I was looking forward to that. Anyway, he got chucked out cause it wasn't visiting hours and all the doctors and nurses purposely do their things in the morning so they don't have visitors hanging around, and another nurse needed to do her thing- cannula joy.

It wasnt that traumatising actually. I wasn't being prodded while half asleep and she found a vein just above my 'golden vein' (which isnt so golden anymore because it was the go-to and has been used so many times its just one big scabby blob now). All very swift too. I was pleased and she was pleased. I was able to be hooked up to my good old IV machine again and they were able to pump the original antibiotics back into me and get me back on that path to recovery again.

I had a snooze and when I woke up it was as if the morning hadn't happened. Felt like me again (as much as I can rn). Despite being in a bit of discomfort when readjusting my positions and not being able to bend down because of the lumbar puncture pain and just generally being a bit weaker in my back, I had full ability back. I could sit up without getting a headache, I was strong enough to move things and my eyes had readjusted and I had the light on!! For the first time in about a week!

My cannula was feeling a bit uncomfortable because I felt the dressing was too tight so the plastic was just pushing down on the skin of my arm a bit. Nothing major, but being the picky whinger that I am I asked the really nice nurse to loosen it a bit. He tried but the tube accidently came out and the cannula couldnt be used anymore. I felt so bad. I hope the person in charge of him didnt give him a bollocking. He avoided doing anything for me for the rest of the day in fear. I hope once I get my picc line in we can be friends again.

Anyway, noone could find another vein so I decided to seize the day being cannula free and took myself to the shower with all the nice new shower stuff my mum had bought me in an attempt to get me washed (properly). I finally scrubbed my dryyyyyyy skin and shaved my ultra hairy legs. It was long overdue and I finally felt human again. Today I also ate. wwwwwwooooo hooo. Nice Nurse Mike told  me they might have to put a tube down my throat to feed me which i NEVER want EVER. So it was nice to not be nauseas for long enough to keep that threat at bay.

They said my CSF fluid hasnt grown any particular bacteria yet, but the first sample showed an elevated level of white blood cells (indicating an infection I was trying to fight) and the second sample showed less (indicating that the antibiotics were doing the right thing). So hopefully now they know they're on the right track, I'll be feeling better and stronger by the day. Surely I must have run out of things to hit me with!! Anyway, back on track... thank ya Jesus!

Part 2: I Bet Your Weekend Beat Mine...

So after a perky friday day, I went to sleep feeling optimistic. Even though I was told by the team in my case, Timmy is too much of a sneaky bastard and fixing me surgically probably wasnt possible. I need to have a six week course of radiotherapy soon after I recover from my last operation. But however annoying it is to come in everyday for half an hour for six weeks is, it's not hugely traumatising.

Anyway, so off in the land of nod I was blissfully unaware that an Meningitis infection was rearing its head and bubbling away. Your brain and spine are surrounded by something called CSF fluid and thats all kept in by a membrane. In the second surgery they needed to be as aggressive as possible and actually planned to scrape away until they perforated the membrane so they knew they'd done as much as they could. They got what they call a 'CSF leak' under control by patching me back up and they did a good job, because after surgery I didn't have anything trickling down the back of my nose or any metallic tastes at the back of my throat. But in the middle of the night I cant even come close to describing the developing pain in my head. It was like someone was trying to stone me to death from the inside. To the beat of my heart, so not even a steady headache, a pounding one. And I'm not sure if its possible to fathom your brain feeling like both a football inside your head but also feeling as if it was a dry piece of coral reef, but that is what it felt like to me. No position would relieve me even for a minute, I felt completely trapped inside my body. I was also paralysed with drowsiness and weakness that the only things people could manage to get out of me were murmurs and groans. And as the morning went on I only felt worse.

The doctors came round and were really worried about me. The brash surgeon also came round and was waving my arm around trying to get me to open my eyes a communicate and even though he was really hurting me because all the veins in my wrists were feeling bruised from all the cannulations from surgery I wasnt able to fully articulate anything at all. My mum came in and knew I wasnt right. (I think a 3 month old baby would be able to figure out I wasn't right though) and was pushing to get me sorted. The nurses and doctors had it all under way already though they were just trying to work out and sort out what medication to get me on and how to sort me out. Anyway, so just after she (and then my cousin) came. A couple of men came in. One asked me to turn on to my side, onto the side of the bed, keep my shoulders straight and bring my knees as far into my chest as possible.

My eyes were closed the entire time so I kind of had to piece together what was going on from what I could hear. Anyway, from the position he was telling me to get in, I thought I was about to have a bloody rectal examination, and based on previous experience, I didnt really fancy one of them. But I was in so much pain and was so weak I didnt want to fight back, I wanted them to do what they needed to do to get me better. He was prodding and pushing all around in my back which actually really hurt. Then, my Mum being the person she is, was asking if she was able to hold my hand and asked if she needed to get me into a better position or something and I remember his response being 'I won't lie, I cant feel the spine for definite so we will just have to be going in blind.' His tone was quite calm so I didnt get too worried but it all pieced together that I was about to have a lumbar puncture. He basically gives you local anesthetic and then sticks a big fat needle into your spine and drains out some of the CSF fluid to relieve some of the pressure. I remember hearing him say that the pressure in my spine was elevated. What they extract could also be taken to the lab and cultured which could identify what kind of infection I had so they can put me on the best possible medication for it. Anyway still feeling the roughest I had ever, they decided on two of the strongest antibiotics the could and administered them through IV. That along with general fluids because the nausea and weakness meant I didn't want to put anything down my throat and even if I did, I didnt have the strength to pour it for myself or sit up to drink it.

The next day I still felt terrible, even when I sat up, the headache wouldnt ever steady or settle and would only scale down once my head was flat down on my pillow again. I was still too weak to communicate but I did feel better than the day before. Then the next day, same thing, still shit, but a little better. It looked like the antibiotics were doing their thing.

But then comes the problems of my pesky little veins. Because of the nature of my surgery and it all being hormone based, my bloods need to be taken at a certain time everyday, and then because of my antibiotics, they also need to be taken again, at some point later in the day. But they cant insert a cannula and take it from the same place like they do at PIU, because they have to flush them (to avoid any blood clots that would stop them from working), the results can become skewed. So everyday at least two new locations need to be found to take blood. And with a cannula in, one site is already out of bounds. The first set of bloods is normally taken in the middle of the night at around 5am, so most of the time I'm just a floppy body they have to try and prick. But their options are becoming smaller and smaller and the veins they're having to try and use are becoming trickier and less reliable. The needle is really painful and doesn't work most of the time now. Then the night came that they had to retreat to my feet. They had to take blood from them the night before which was a little traumatising by I could live with it. But when they said they had to find a different vein in them again my heart sank. And then they had to put a cannula in them. It was 5am, I was half asleep and I was sobbing my eyes out. I had to have a drip IN MY FOOT. Silver lining from this one was that I didnt have to wear these ugly and suffocating stockings because they couldnt go over the cannula. But still, I'd much rather wear them then look like an idiot and feel disabled being hooked up to a machine via a tube from my left foot.

I have to use a call bell to get the nurses to unhook me any time I want to move and every nurse that came in was taken aback by the fact i was cannulated via the feet. I just had to laugh about it. But even so, those cannulas dont last a long time, maximum three days, and mine stopped working after a couple. So out came the foot tube and another nurse managed to find an accommodating vein (albeit an inconvenient place) in my arm. Relief.

The really nice nurse I had also changed my antibiotics to some that didnt require the blood tests alongside, in an attempt to relieve me and the other nurses from going through the trauma and the tears so often. I think im the notorious one on the ward that none of the nurses want to be assigned to because there really is no easy way. I am battered and bruised all over and any veins I do have left are so small they tend to collapse as soon as the needle touches them so the nurses are stuck with a bit of an impossible situation.

Lovely Nurse Mike tried to book me in to have a picc line fitted to save all my vein drama too, which is basically an industrial cannula that can last up to a month (ideal,  seeing as I have to have these antibiotics intravenously for at least two weeks), and you can take blood using it too. (Only bad thing is that in order for it to work it has to be inserted into a big fat main artery deep in the top of the inside of your arm) But they only get fitted on tuesdays and thursdays, and he was only able to get me booked in for next tuesday :( (a whole week! I do not have 14 more places to prod in the time being). He was going to carry on pushing for it to be sooner and if not he was going to push for a central line, which is kind of the same thing but can only last for a maximum of 10 days and is put in much more unpleasant places, like the neck, tummy or thigh. Anyway, still no confirmed schedule for the picc line yet, but rumours today were that tomorrow could possibly be my day. Lets keep our fingers crossed!

Part 1: Second Surgery

This past week has probably been one of the worst weeks of my life and a lot has happened so I'll split the next update up into separate parts.

Second surgery morning rolled around and since the first op I didn't have the biggest of appetites, so the last time I'd drunk or eaten anything had been a bag of chip sticks and a cup of juice at 4.30pm the afternoon before. I've been on medication that you have to take with food, yoghurt or milk (athough I usually just took them with squash and felt the pain of my stomach fizzing instead) first thing in the morning since december last year so waking up and not being able to even wet my mouth was hard and my god I was so thirsty. Not knowing when my surgery would be in the day was hard to and all I could think about was when I was next able to guzzle down some kind of liquid. My insides felt shrivelled up and dry. So they put me on a fluid drip so I didn't become too dehydrated (this avoided me having anything in my stomach which i could vomit up during surgery).
Anyway, so both my mum and my sister came first thing in the morning and stayed with me until I was wheeled down to theatre again where we were met with the surgeon. Mum asked a few questions about the nature of this surgery and he basically said that what was left was so microscopic that they wont actually be able to see what theyre trying to remove so they have to plan to go in aggressively and scrape as hard as they can in as big of an area as then can in the hopes of removing whatever is still festering around there. My Mum asked if there was potential of taking the whole pituitary gland out and he just said 'yeah, could do.' willy nilly. It was all kind of scary having that struck upon me just before going into theatre. A life without the main control system for everything that goes on chemically in my body? eh? I'm not prepared for this!

But alas, no time to contemplate. Its time to go under. I got wheeled into the room but facing the other way so this time it wasn't so 'lay back and enjoy the ride'. I could see all the stacks of different medical equipment, I could see into the room where they were with their masks on cleaning all the tools for surgery. It all felt very slow this time. But then I saw the nice anesthetist I had the week before and it gave me a bit more comfort. He explained it all again and luckily because I had the cannula fitted for my sodium drip to keep me hydrated in the morning I didnt have to experience the painful insertion in the back of the hand again. He just administered the anesthetic through that instead. The woman holding the oxygen mask over me also held it closer to my face so I actually went drowsy and air-drunk. So going under felt like much more of a process this time.

Anyway, same thing happened and I thankfully didnt remember a thing after that. Thaaank ya Jesus. I woke up in recovery. Unfortunately back again with a tampon stuffed up my nose. This time the string was sellotaped to my other cheek rather than slap bang in the middle of my forehead. Last time I felt like I had been hit by a 4x4 but my God this time I felt as if I'd been hit by a double decker bus. Multiple times. I came round and she turned the lights on. When she did behind my eyes pounded like some kind of lion trying to get out its cage, so that paired with the overwhelming feeling of drowsiness I physically couldn't keep them open. She went over the whole 'whats your name? do you know where you are? whats the date? how much pain are you in?' malarky about twenty thousand times I just wanted to scream at her to turn the lights off and take me up to the ward, but alas, no energy. She banged on at me that they cant take me up until I'm fully awake but I was! (in my mind) I just couldnt keep my eyes open. I could register everything going on but I just couldnt fully respond with my body. They called for the nurse to come and collect me but she came down and refused. Too drowsy, too dangerous... Bitch.

The recovery nurse kept on at me about keeping my eyes open, warning me I had to pretend I was fully awake when the nurse next comes back down so I can trick them into taking me back up to the ward. Then she made the phonecall for collection again. This time a different nurse. She accepted me (or could have been a he, I admit I was out of it and can't say I really remember).

I dont remember much else from that day aside from the fact I couldn't open my eyes because it was too bright and that I needed to piss what felt like every 20 minutes, but didn't have the energy to go to the bathroom, so they had to lay down one of those incontinence pads like the ones you put on the floor when trying to train your puppy, and make me lift my hips while they put a bedpan under me and let me do my bizzness. Think I mastered the skill for that one that day. No more taking up all the bowl with my arse and overflowing it like I did last surgery. Oh I also remember being SO THIRSTY. But also (initially) very sick. On the ward straight after surgery I drank half a cup of water and five seconds later vomited two sick bowls worth. (I did this all with my eyes closed so I didnt see for myself but I remember my mum banging on about my sick just being 'coffee granules' which were lumps of blood that had got into my stomach during surgery, yum.) But after I was sick I didnt feel nauseous anymore. I just wanted to DRINK. But then they wouldnt let me quench my thirst incase I vomited again which was super annoying. In the night when the curtains were drawn, my family had gone home and I had enough strength to lift the jug up for myself I binged on about 15 glasses. It was bliss. Thirst quenched.

Can't say I remember the next few days after that either. Purely sleeping and feeling generally rough. They moved me into a side room for my photophobia (intolerance to light) but by Friday I had perked up enough to converse and managed to take myself to the shower and feel human again (this meant having to wear pants again which was a downer but ya win some, ya lose some, and this was one I was prepared to lose.) They said surgery went to plan, my cortisol levels were much lower and I should be on the way up!!!!

...Round 3...

So last night i went to bed (well... Went to sleep** seeing as im always in bed) in the hopes of being released today. But much to my dissapointment the encrinologist said he wanted to run baseline tests ( my bodys natural hormone levels) and to do that theyd need me to be off any replacement medication which theyve put me on as protocol. So I needed to be not given my medication this evening and bloods needed to be taken tomorrow morning. Another day in hospital feeling absolutely fine! Yay! But hey not too bad... Probably out tomorrow.

I had a few surprise visits which made my 'last' day in hospital quite nice. I wasnt polyuric either so i didnt need to be injected which was also a bonus. But then just as my mum was about to leave, the registra that went through my consent form with me popped his head into my bay and made his way to my bed. Long story short they want to re-do the surgery. My cortisol levels werent as low as they would like and the results from Timmy's biopsy showed the cell division was high and the nature of the tumour was quite agressive. So anything left in there isnt likely to take a back seat anytime soon... He also mentioned that because it is so agressive I might need to do a six week course of radiotherapy to keep any possible remains inactive which i bet will be barrels of fun! 

Im kind of sad that I have to go back under and kinda sad that the situation is worse than we all thought but I guess it makes sense now as to why I wasnt really afected by the metyrapone and why I was feeling so spritely so soon. But i guess thats just me being too optimistic again! My recovery really was too good to be true!

Anyway so, not the greatest news, but Ill be having surgery again tomorrow. At least I dont have to wait another six months to get on the table again. Fingers crossed I dont piss the bed in recovery this time...

Still Alive and Kickin'

It's now 4 days post surgery and I am feeling high and dandy! I went in on Tuesday morning to be told I was 3rd on the list (which meant at least 9 hours of waiting :'(), so first thing i asked was if i could eat anything (I had to be nil-by-mouth from the night before). She flat out looked at me square in the eye and said 'no. you eat, it's cancelled'. Right, that was that then. A day of hunger ahead.

Anyway, a few minutes later another woman came and introduced herself and said there must have been a confusion because I was actually first on the list. wahey! maybe they'd seen the newspapers and wanted to get me over and done with and out their hair as fast as possible. I was first seen by one of the surgeons that went over all the risks and got me to sign the consent form. Risks being possible stroke, possible loss of vision, possible CSF leak and meningitis infection and then the big old risk of never waking up. All veeeery minimal though. I asked if I could take timmy home... He said no :(.

Then I was taken to get some pre-surgery blood tests and changed into the notorious sexy gown and stockings. Oh and another piss sample was taken for an on the spot pregnancy test (negative). Then it was time for me to go down into theatre. I said goodbye to my sister and went down with my mum where the anesthetists introduced themselves and told me what would happen. Then I said bye to my mum and went into theatre. I climbed on the bed and a man started talking to me while they prepared things in the background. He put a cannula in the back of my hand and told a bad joke. 'Have you heard I'm on the sea food diet? I see food and I eat it' He then tried to tell it to one of the other ladies and after the question she just said 'eugh. too expensive.' and walked off. Didn't even have a chance for the punch line poor chap.
And then I was out. Don't even remember getting drowsy or anything. I was on and then off like a switch. Next thing I remember was waking up, with a tampon in my nose, to a couple of people reminding me to breathe and that surgery went well. They kept asking me if I was in pain which I cant even really remember being in but I guess I was as they pumped 14mg of morphine into me. I got up to the ward about 4 o'clock and that's all I can really say about the day. They woke me up every 15 minutes to check my blood pressure, oxygen levels, temperature and level of pain but I was pretty much asleep until about 4pm the next day.

Then when I woke up I had a dull headache but nothing much. I didn't need any painkillers (they're meant to bung you up no end and I don't really fancy that unless I have to) I'm pretty sure the headache was just because the room was so bloody hot and stuffy anyway. I didnt feel completely wiped out. Yeah a little tired but nothing more than the norm. Which I thought was strange because they said they were expecting me to be practically lifeless and I wasn't even on any cortisol replacement that day. Not gonna lie I was a little bit worried that that was a sign they hadn't got it all out and Timmy was still blasting steriods into my body but they took my bloods and the next day they said they were happy with my levels and they corresponded with the assumption that they'd got it all out. My morning cortisol was 210 which is apparently a little on the low side but thats what they wanted to see. So... good news!! They reckon on the Cushing's side of things I am rid of and in remission!

But even though I've got full movement, I'm feeling absolutely fine, no headache, nothing. (Only small thing is that my nose bleeds if i move too fast or have any strain) I have to be kept in because im polyuric. Which basically means im deficient of one of the hormones that regulates my body's fluids and I'm peeing like a fountain. The doctors said it is quite common after surgery though, but I have to go 24 hours without being polyuric before they discharge me.

Its kind of embarrassing if you think about it... I have to take a labelled bed pan to the toilet every time and leave it there chilling for them to collect and measure. But I have to do it about 10 times a day, so it's kind of like second nature and not very embarrassing anymore. Just gotta catch their eye and give them the 'my piss is awaiting you in the ladies toilet- you know the drill' eyebrow raise.

It is SoOoOoOo boring here, the most stimulating thing I have to do is take a shower. And I've always been a frequent pee-er so it's frustrating not being able to leave because of something I've dealt with since forever. And to the people who complimented me on the clarity of my piss when i sent them a pic from when I was collecting it for my 24 hour urine collection (lol)... turns out the clarity wasnt a good thing, my body isnt retaining the water it needs to (ops).

But if polyuria is the only abnormal thing about me now I am more than happy! I'll hopefully be discharged on monday.

I've met some interesting characters since being here. Sassy Janet maybe being my fave. Shes diabetic with a back issue and she used to be an avon lady. Although she does have an ear piercing text alarm which I could have done without. But hey ho, im in a different bay now and poor Janet is on her lonesome in a side room. Hunky nurse Alvaro is also high up on the list of my favourite people here. Reasons obvious.