So, today is my 1-year post-op anniversary! This time last year I had just undergone surgery to have my lung lining ripped out! I never blogged about my time in hospital but a year on maybe now's the time to entertain you with my experience!
As some of you know, things didn't quite go to plan when it came to waking me up. Over the following few days I suffered grand mal seizures and, what at the time was thought to be, a stroke causing left - sided hemiplegia. When I did finally wake up I didn't notice any problems with my left side and was quite bewildered as to why I kept being asked to try using my left hand for things when I am right-handed!
Time lost meaning, I thought it was Wednesday and it was Sunday, presumably because I expected to have woken up the day after my op and had no idea of the events of the previous few days. Although in saying that, from the dreams/hallucinations I had, I think I had known something was wrong. One minute I wad in critical care, but it was a weird high spec place, the staff were lovely but all sort of holographic, they moved really weird but really fast and their faces were odd, like caracatures with over large heads, mouths and teeth. Not scary, just strange! The next everything went brown and pixelated and wavy. If you've ever played a computer game where you're running past a brick wall and it all goes a bit blurry and weird, it was like I was in a room like that but I knew it was inside my body and something was wrong, the faster the waves moved, the more wrong things were and I would start to panic. I was convinced I was dying. Then I'd be back in critical care again. This happened a few times, alternating between CCU and this room, and then I started to change and I became 2d and I watched as my body started to disappear. I became like a curtain and the bottom was starting to tear as though it was going through a shredder. I got really upset and was sobbing because I didn't want to die. I didn't want to leave my loved ones, especially Faye and Billy. I kept telling the nurses and doctors to tell them I was so sorry. That I tried really hard to live but I wasn't strong enough....
Then I was really back in CCU and being moved to a bay. For the following few days I had no idea what was real and what wasn't. Although at the time everything felt really real, as I recovered I realised that 99% of it was in my head!! The 1% being that some of the stuff did happen but just not in the context I thought!
First off my hair was short, I could actually feel it being in a job and I couldn't remember having it cut (mainly because I hadn't and it was still the same length!). My fingers were wrong, they were spaced wrong and I had 6 on one hand.... I was firstly convinced that this was because I had heart failure and then somehow thought my fingers had been swooped with someone else's when I was under and thought this was a really cruel joke! Mum and Dad and Jay all had caracature faces like the staff in CCU and I kept wondering how I'd never noticed before but didn't say anything as I didn't want to offend them! Oddly the staff on the ward looked normal. The first night I couldn't sleep (or thought I couldn't but most likely was dreaming!) I was counting in my head to try and pretend to be asleep because staff kept coming in to check on us and kept stopping by me. I got the impression they thought I was faking the whole thing and there was nothing wrong with me and I was upset as I couldn't understand how they could think anyone would go through that op for no reason. More staff came and watched me for a bit then 'woke' me to do obs and inject me with something. They were really nice to me which I thought was really good of them if they didn't think I should be there. In hindsight it was probably more likely that I was just on more frequent obs than the others as I was still quite poorly!
There were several other things that I thought had happened and some things that I came to understand better as I got better ......
Firstly there was always a member of staff in the doorway of our bay at the bottom of our bed and they wouldn't leave unless someone else took over. To start with I thought this was just what they did, eventually I realised it was because I was on 1-to-1 obs because I waa acting so nuts!! 😂
There was a patient on the opposite side of the bay to me who passed away (apparently this bed was actually empty!) Anyhow, this lady, that only I could see, had her own special bed, zebra patterned too! She was very poorly and I could see the numbers on her monitor going down and down to - 1-1- then - - - - - at which point her bed, which was slightly raised, automatically reclined back down to being flat as she passed away.
Next thing, she'd gone and there was someone new there. (again I was later told that the bay was still empty!) The new lady, who again only I could see, was just there to annoy me!! She was the most irritating person ever! She had the curtain permanently closed around her bed it kept putting her stuff just in view. First it was a flat screen TV (just to confirm I wasn't completely nuts, I did think this was very strange!), then another TV appeared as she was singing (badly!) about how rich she was. I did want to tell her to bugger off to a private hospital then if she was so rich and let the rest of us sleep but I just tried to ignore her instead. Then mannequin appeared next to her locker, and every time I looked up there was a different dress on it.... It sounded like she was shaving but the noise carried on and on so I went to the toilet and could see her sat on her bed laughing with her tablet just playing sound effects. She then started to play music too and put both TVs on. Eventually the nurse took her tablet off her and turned the TVs off. I gave up trying to sleep and read a magazine but she seemed to somehow grow to about 7' tall and started watching me from the top of her curtain rail, sliding along the top of it so I had to keep moving my magazine up higher to block her out. Thankfully she magically disappeared too 😂
Then came the paint.......
I was talking to a lovely nurse who was obviously on obs duty and she was upset (she wasn't but I could definitely see her crying! Which is nothing compared to what happened next!!) I asked what was wrong and she said nothing but was still crying so I gave her some tissues and asked if she was ok. She told me she had something wrong with her but she was on meds and they mainly controlled it so noone knew apart from a few other members of staff who covered for her if need be. She pulled her hair back and showed me how she had lizard type skin patterning on her face but her hair covered it so you couldn't see it normally. I tried to reassure her that it was OK as you couldn't see it but even if you did it didn't look horrible but then it started to spread and she cried even more and told that once it started to spread it wouldn't stop. It spread down her arms and legs but carried on along the chair arms, the floor, the walls but it was like orange and white paint running everywhere. It carried on throughout the hospital, it was 'raining' inside and even spread outside. I was mortified and so guilty that if I had left her alone none of this would have happened and now I'd let her secret out too. Lots of people were walking past the bay and seemed to know it was my fault, talking over-loud at the doorway about all the operations that had had to be cancelled because all the equipment was ruined by the paint and how many millions of pounds it was going to cost to put everything right...... All the staff and patients were getting covered in it, their hair frizzing up on end, their clothes getting ruined. And they all knew it was my fault. I started trying to clean the locker next to me so it wasn't dirty for the next person and the staff were trying to humour me and stop me at the same time! I really did go to the reception desk to ring Jay completely beside myself coz I didn't know what to do! After the initial shock of me telling him I'd painted the hospital and everyone hated me, he humoured me and told me not to worry, he'd look when he came it and would sort it. The lovely man behind the desk asked me why I was so upset and I keep apologising, told him what happened and that I hadn't meant for it to happen but I didn't know... He came round and gave me a big hug and said "there ain't no paint", he told me to look around to see that there was no paint running anywhere and if there was the ward would have been closed, it was just because of all the drugs I'd had and I wasn't to worry as I hadn't done anything and noone hated me. He gave me a big smile and told me to trust him. And I did! The paint disappeared from everywhere apart from our bay but now I knew it wasn't real, it didn't bother me! After that, every time this man started work he would come in to see me, give me a hug, ask how I was doing and repeat "there ain't no paint" with a big smile!
There was a nurse I was convinced was fake and was bumping people off, I didn't want her anywhere near me and was horrible to and about her (she was actually really lovely!).
There were 'leaf bugs' that kept appearing but if you hit them they disappeared. Even though I knew they weren't really there, I could still see them so mum and dad and Jay were still concerned that I kept hitting them, even though I told them I knew they weren't real.
A tree branch also used to come through the window. I learnt how to tell the difference between the things that were real and the things that weren't, ene though this didn't make the things that weren't real go away. The fans used to have a tune playing constantly that drove me mad. Again I was the only one who could hear it. I had to keep unplugging mine just to dull it enough to sleep. I could see my obs on everyone's monitors as well as my own, and the numbers kept going down and I would get really stressed out, convinced I was going to die if I stayed in that place. The nurse turned my monitor around so I couldn't see it and turned the other patients' monitors around or off, although I could still see the numbers even when the monitors were off! As I got more stressed, the numbers I could see appeared on the walls and scrolled faster, the leaf bugs increased in number, the paint spread wider and faster, and the tree branch got longer and came further I to the room. As I got more used to this I started to use these signs to recognise and judge how stressed I was getting and then concentrate on making them reduce/slow down to help calm myself.
As for my physical health, I was doing ok! I was getting up and moving about, my left side was fine, I was eating like I hadn't seen food for days (which in fact I hadn't! 😂) . I started chatting to the other ladies in the bay. I got on really well with the lady next to me, who always calmed me down when I started to stress out. I gave the lady opposite her a manicure and sat with her when she was feeling poorly and sick. We all got on well, had lots of laughs and kept each other going when things for tough. I spent the last couple of days, apologising to the staff for having been so horrible and such a pain, even though I was still being a pain by being convinced I was going to die and trying to unplug anything and everything electrical to stop it singing at me! They were so patient and tolerant of me and my paranoia/hallucinations! As were Jay and mum and dad every time they visited me! Our bay all got discharged on the same day so we met up again in the discharge lounge! The lady from opposite told her son how, as she came round from her op, there was a nutty woman opposite her wittering on about painting the hospital, then gave me a big wink! 😂 I finally got my tablets and was free to go! I was so pleased to get out of that place as, as soon as I left, the auditory hallucinations stopped and the peace and quiet was absolute bliss! The leaf bugs hung around for a week or so still, but they didn't make a noise so they didn't bother me. I still woke up in a panic a few times when I'd still see my numbers going down and down when I closed my eyes / dreamt. My wound got infected and opened up needing 1 or 2 trips a week for several weeks to my GP nurse for dressing. Overall though, I got back to my version of normal fairly quickly and I am forever thankful to the skilled surgeon and staff at Papworth for the treatment and care I received whilst I was there.
After reading all the above, and there are possibly many other things I did or said that aren't here, you will understand how I couldn't blog from hospital as I wasn't deemed mentally stable enough to be trusted with my phone, no matter how much I begged pleaded, and promised to be good!! 😂 😂 😂
I feel very lucky to live near to the only hospital in the UK to offer the specialist surgery I had done and I have therefore decided to challenge myself a year post-op, as a thank you to go the staff who cared for me, to doing something to raise money for Papworth Hospital Charity and have signed up for the Asda 10k Leicester on 9th September.
There is a link at the top of my page to my Just Giving site if anyone is in a position to be able to make a donation to this fantastic charity.
Night night everyone, I'm off to dream of leaf bugs....... 😂