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.

Round 2!

You're probably sick of me by now but this morning I received the all important rescheduling call! My surgeon has booked me in for the 10th May. Same protocol. Admitted at 7am, in theatre for 2-3 hours and plopped onto the ward for roughly 4/5 days. Fingers crossed it all runs smoothly now!

And another clarification on what todays newspapers have published... I do NOT have cancer! (Who writes these things?) 

Junior Doctors- Do your thang!!

So thanks to my wonderful mother having a rant to the bbc, my face and story has been plastered all over various newspapers and sites (Yah, cheers for using 5 year old photos of me with no eyebrows daily mail.). I just wanted to respond and clarify that if anything was written in a way to suggest I blame junior doctors or that I am not in full support of the strikes - I dont and I am!! 

The responsibility for this mess lies entirely with Jeremy Hunt. I would much prefer my surgery to be postponed then to be under the care of exhausted, sleep deprived, unmotivated and drained doctors. Despite what some people make out, doctors arent striking because they're greedy and care more about themselves than their patients but are striking because his decisions are dangerous for everyone involved by putting peoples lives and futures at risk (doctors and patients). 

My frustration lies with the empty promises and the fact my surgery could easily have been scheduled for a more convinient time. But hey, maybe thats the result of the huge pressure Mr Hunt has put the NHS under already. 

And also for those worried because the papers are making out like im about to kneel over and die tomorrow. Im not. Its just the longer my body is exposed to the steroids, the more damage is being done and the more pressure my body is being put under. So yeah, surgery is quite urgent to prevent an endless list of long term conditions developing but even with Timmy tumour having a rave in my brain, I'll still be here tomorrow. And the day after that. Just maybe a little more damaged than today. 

Also another update on surgery is that there is no rescheduled surgery planned. (Wahey!) I must wait until next monday to pester them again. 😒

Jeremy Hunt is a .......

Its common knowledge that there is a planned junior doctors strike on the 26th and 27th but i highly doubt ill have a junior doctor performing my operation and seeing as my surgery was scheduled after the strike had been announced and all the nurses said it was still all systems go I thought I was in the clear. But then I got a phone call yesterday warning me there 'might be a possibility' of it being postponed (but as of yet its still set to go ahead).

Annoying but I still stayed optimistic. I guess they just have to cover their backs. But then I got a phonecall telling me that because of the strikes they cant go ahead with surgery and it would need to be postponed. Im pissed off. I fully support the strikes and stand behind them 100% but nothing has changed since they were proposed. Why do they leave it until 6 days before surgery to tell me it cant go ahead? Everything has to be rescheduled now and I have to wait even longer. On the phone she said she didnt even know when it would be set for so I've gone from 6 weeks to 4 months to 5 months and now indefinitely. 

Im bummed. And fed up. It would be fine if they gave me set dates and let me live my life in between but Ive been expected to be on standby for 6 months now and I'm tired of it all. Who knows when I'll reach to the light at the end of the tunnel :( 

Pre-opp Assessment and Final Hospital Visit!

Monday was one of my funnest hospital visits yet. I was initially just booked in for a pre-opp assessment but had to incorporate another day curve into the tests because when I didn't feel like the increase dose was making any difference my CNS said she wanted to check what was actually going on (although I reckon, pretty pointless as by the time the results are back it would only be about a week before surgery and as I learnt the hard way, it takes a relatively long time to actually make a difference).

I went in and just like the first time, had to wait for over an hour in the stuffy waiting room to be seen (it must be a monday curse). When I got shown my bed, the little wheely table beside it that they keep the tray of equipment and vials of blood on was fully stocked... they wanted 18 tubes today! Also on the table was a bottle of body wash that I have to use everyday for 3 days in the run up to surgery, 3 MRSA swab packets and my good old friend... a piss tube (in a discrete packet with a bright yellow funnel). As usual, Kemi put the cannula in my magic vein and started taking blood but about 3 vials in, my vein decided it didn't want to cooperate anymore and Kemi had to retreat to manually seringing the blood out and putting it into the tubes... even then it was reluctant to come out so after struggling to get the 9th tube filled she made me drink two big glasses of water to help the flow. It seemed to do the trick and voila, my first 12 tubes were ready to be labelled up and taken away. Next up were the 3 MRSA swabs, one taken from the squidgy bit at the back of the roof of my mouth, one shoved up my nostril and one from my groin/the inside of my thigh (which I had to pull my jeans down and spread my legs for lol).

Shortly after I was seen by two doctors. No idea what the woman was called but the man was called James and they were both nice. We had a long chat about symptoms and my history etc. They asked me how long I'd been feeling ill for before I got diagnosed. I've been asked this loads of times before but I never really know what to say... essentially I got diagnosed all down to chance. I've never really felt ill. Feeling generally a bit shit and having to actively fight to get anything physically done has always been the norm for me. I thought that was just the way humans were made, naturally inclined to be docile and lazy... I guess I'm lucky in the sense that I wasn't to know any better and that I've never felt unwell but then again, if normal for me isn't healthy, it's tricky to know what to look out for.

Anyway, so with discussion done and history recapped the little woman plodded off to see someone else in for their assessment and James was left to carry out lots of little tests on me. He prodded my abdomen and asked if I felt any pains (I didn't), he tickled different parts of my arms and legs to make sure I could feel sensation (I could), he tested my strength in my neck and limbs by getting me to push against him in all different ways, he did the red pin test to test my peripheral vision and probably did some other little things that I can't remember.

Physical tests done and I needed to pee. I had to scurry around the corner and try and find Kemi to assemble the confusing funnel-tube contraption. Slightly embarrassing having the whole of the unit watching me prep to pee. So I went into the bathroom and did my business (all over my hands) but hey ho, oh well, at least that was one awkward process over with. Yeah... until I opened the door and saw Kemi on the other side... I had to hand it over to her while it was still warm. We both ignored the awkwardness of the situation- I sat back onto my bed and she wandered off to help someone else.

After a couple of games of 2048, Kemi came and asked me to move into a more private room (the room I was initially in didn't have a door and if I drew back the curtain I could party with about 10 other people). Don't think it was for the privacy though, more for the space. Next up was my ECG and the big machine needed room. She stuck 10 sticky labels on me- one on each ankle, 4 around the bottom of my left boob, one on each wrist and two on my chest. She then clipped a wire to each one and pressed the button on the machine twice. The machine printed out two graphs (?) which looked cool. No idea what they read but they looked cool. She took another couple vials of my blood again and sent me up to my anesthetist appointment.

The room was stuffy and the receptionist was a big burly woman who seemed to huff and puff about everything but all I actually saw her do was tick two names off a list and book a doctor's appointment for herself. I had to wait in there for an hour and a half and it was super boring to say the least.When I was finally seen I was a bit disappointed with the appointment. She just asked me a load of questions she could have found out by looking at my notes and then I was done and sent on my merry way. That room is gonna be the room I have to check in at at 7am on the 26th and where I'll go from to theatre... all felt a bit surreal.

So after that I hurried back downstairs with my file to the PIU ready for my next set of bloods to be drawn. Kemi awaited me with my hospital packed lunch, took my blood and left me to have a nap (I've not been sleeping very well recently, I can't reach the land of nod until about 3:30/4am, so it's perfectly fine when I can sleep in until midday but on the days I have to get up at 8am, an afternoon snooze is very much needed).

Two hours later and it's time for my final set of bloods. The final little test before the big op! I felt a little sad knowing it was the last time I was gonna spend the day in PIU. It's friendly in there and I love nurse Kems. Anyway, bloods drawn, Kemi took my cannula out and popped a plaster on me. While she was labelling up the tubes I put my white jumper on and just as I was about to put my coat on too, I looked and saw a little red patch coming through my chunky knit. Damn it. I pulled up my sleeve and it looked like I'd been massacred. My whole arm was coated in blood and I was dripping all over the floor. Kemi rushed to the rescue and stopped the bleeding with a bit of pressure and a little cotton swab. Once the blood stopped she cleaned me up and soaked my (once white) jumper. 'Nevermind', I thought, it was getting old and bobbly anyway. But my girl Kems worked her magic and after she was done with it it looked good as new. So off I trotted, sent home with a bright green carrier bag of soggy clothes. Like a child who has pissed themselves at school.

Its only 9 days until my surgery now and I'm feeling excited! Not really looking forward to feeling like I've been hit by a bus, but the closer the surgery, the closer the recovery. And health is wealth. I'm cramming in as much nice stuff as possible before I'm out of action for the whole of summer and most probably christmas. -Pottery class in the morning, pedicures, haircuts and a date at the zoo with my granddad next week! It's only up from here...