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...

We Have a Date!

So its been a long while since I wrote another blog post (again) but this time its for the complete opposite reason... I've been busy (but I am also still lazy)! A few days after writing the last post whining and moaning about my lack of energy and general cruddy-ness something in the water changed and I was suddenly given the key to unlock all my energy again! No doubt about it, I could still sleep until I had a reason I had to get up but I suddenly felt like me again! Unfortunately what came with this was also the inability to sleep before 5am and needing to pee every three and a half minutes so, in the back of my head I kind of knew it was all down to my cortisol levels skyrocketing again as opposed to me finally adjusting to my medication. But to be honest, compared to how I was feeling with lowered levels, I wanted to give maintaining my health the big middle finger. I felt as if I had just spent all my parents money traveling around southeast asia and found myself again. I was loving it. I spent a week up in Manchester, saw Adele (queen, SLAY), hung out with my family and friends and got back in the kitchen. My life was enjoyable again!

But as I said, deep down I knew that feeling like this was a great sign socially, but most probably a bad sign medically, so when I handed in my what weighed like a gallon of pee again at the start of my next day curve test I was apprehensive. I had my neurosurgeon meeting scheduled for the next week and I was worried the results will come back too high and my surgery would have to be postponed even further (I think four boring months is enough). But my doll Kemi reassured me and said that if it comes back high they're most likely to just increase my medication rather than delaying the op.

The next week rolls around and it's time for my all awaited neurosurgeon meeting. I was PUMPED. It was what I had been waiting for after all this time (surgery before christmas my arse). So when the name of the doctor it said my meeting would be lead by got rubbed off the whiteboard I was worried. All we got told was he 'isn't in today'. Fuming. I really just wanted to get it over and done with. Give me a date, give me a to-do list and send me on my way. Meet you in theatre, doc. Quit playing with my emotions like this!!! Anyway, so half an hour after my scheduled appointment time I got called in by some guy I'd never seen before (not really a 'team' meeting at all) who proceeded to show me my MRI and tell me a lot of basic stuff I already knew. 'This is your nose, these are your eyes, and this is your brain...'. He then went on to tell me the only way to treat is through surgery and booked me with a hot date with the operating table on April 26th. Wahey!! Then, when I queried about the results of my last tests he got them up, looked at them and went out the room to consult someone else. Ding ding ding, just as I expected... My cortisol has shot up again.

A new man came in and explained a lot of things I already knew, again. 'You normally feel like this because you have high cortisol levels and then you felt like this because your levels were lower and your body wasn't used to it blah blah blah'. 'While you were feeling bad your levels were lowered and in the most recent test they're high again blah blah blah' Yes, come on, get to the point. I know this. And then he popped the question 'now do you want me to be honest'. Rhetoric question? Yeah, I'd kind of like to know what's going on please. 'You're not taking your medication'.

I wanted to slap his stupid glasses of his face.

Actually, Mr Doc, I'd quite like to not take my medication, but alas, I do and I'll have you know I'm really quite anal about it. I've missed about a total of maybe 5 doses the entire time I've been put on these soul absorbing capsules and considering I have to take them 3 times a day and you've put me on them for three months already I reckon that's pretty good going. You asshole.

My mum backed me in my corner and we pushed him back into his. He said in that case then they've 'neglected' me and they should have been more attentive and kept a closer eye. Yeah. Too right. I've been telling you about my changes and all I ever hear is 'oh, okay well we'll see when the results come back'. He said although I felt horrible for the first couple of months on Metyrapone, they were doing the job and that was a good thing. He then said he's going to have to increase my medication and essentially put me back to sleep. I feel as if I'm a jack-in-a-box...I've finally broken free and he wants to push me back down and shut the lid on me. What they normally do to someone already on my dosage is add on Ketoconazole but instead of going through all the faff of prescribing, sourcing and starting me on a new drug, they're just going to increase my Metyrapone to 750mg TDS. So bam, that was managing my cortisol over with, now just the small problem of my blood pressure. He said that when you go under they only ask you about two things: allergies and blood pressure. He said with cortisol levels, they can be lenient but when it comes to blood pressure, no systems are go if it's not controlled.

When I told him I was on 3.75mg of Ramipril he told me my GPs were pansies and with readings as high as mine I need a lot more pumped into me than that. He blasted my Ramipril up to 10mg and said I had to go back on Amlodipine again. I told him about my amlodipine induced wotsit ankles so he threw in Bendroflumethiazide too. Brilliant. That week I was on SEVENTEEN tablets a day. That is only because I wanted to use up my lower dose ramipril capsules before starting on the big boys, though. Pleased to say I'm down to thirteen now. pah.

But pumping a stronger cocktail of drugs into me hasn't made much difference to be honest. I'm still here! Ive had a few (inconvenient) waves of feeling shit but I'm still buzzing at 3am and still pissing throughout the night. The physical symptoms have also reared their ugly heads... my skin has erupted (although eat, sleep, breathing easter chocolate probably doesn't help), my hump has returned and as my mother so kindly pointed out, so has my moustache. Just get me to that operating table!

It's been a while...

So, I haven't written a post in a very long time, partly because what's been going on hasn't been particularly interesting, but mainly just because I'm a lazy piece of shit. So I guess I should catch you up now before it all piles on top of me and I forget more of what's been going on.

I've been on Metyrapone for about 8 weeks now and much to my luck, it's still giving me sucky side effects. About 15-20 minutes after taking it I get a sudden wave of light-headed and dizziness and, as one woman described in her experience, 'eyes roll around my head like a smack addict on a fix'... then I get an overwhelming urge to sleep away the day. I also started getting those kind of headaches that you get if you're stuck in a stuffy car with a really bad driver, constantly. I'm usually not a headachy person at all, so developing a perma-ache really ain't my cup of tea. Oh and I've also started to get painful migraines that actually physically hurt and wake me up in the middle of the night more frequently. (recent life really has been joyus).

So my follow up Metyrapone day curve test was originally meant to be on the 21st January, but my Mum called my CNS worried about my headaches, drowsiness and the rash around my neck and chest getting worse, so they brought it forward to the 7th so they could 'check me out' sooner rather than later. That day I walked in and as soon as I was seen I got told 'lie down, you look ill'. (Cheers). But at least this meant I was given a bed this time... swings and roundabouts. I can't really tell you much about the day because I was quite literally unconscious the entire time. When my arse touched that bed and the curtain was drawn, I was out like a light. I can't really recall the outcome of when Jackie (consultant) and Patsy (CNS) came to see me. We spoke for ages but didn't actually say much. All I can really remember was that Jackie was relieved that Metyrapone hadn't induced my rash and it was there before, and that we should wait on the results to see what's going on to find an explanation for my symptoms.

About 10 days later my mum gave my CNS another ring because the side effects were only really getting worse. She suggested starting me on Hydrocortisone (a cortisol replacement) because it seemed like the Metyrapone was doing too much of a good job and my symptoms suggest that now my cortisol levels were too low. So that was that, another couple pills to add to my daily cocktail pot. I kept my fingers crossed that it would pump some energy back into me so I could actually schedule something that lasts longer than 3 hours into my day, but alas, no luck. I haven't actually felt any different since starting. In fact, one day I had a migraine all throughout the day and when I finally got up at 5.30 (pm) I was beckoned back to bed with the same pounding headache by 10.

My next appointment was a CT scan of my adrenals, just to make sure I wasn't double whammy-ed with a tumour on my brain and my adrenal glands. Another quite fun experience, except when they pumped the contrast through my 'teeny weeny veins' (as he ever so kindly put it), it gave me a sensation that felt like I'd wet myself. I felt wholly inappropriate talking to him trying to remain normal whilst down below, I felt like I was sitting in piss. Anyway, results from that came back and although I have enlarged adrenals (which is to be expected as they're doing more work than the average), there were no growths or abnormalities... hooray!

Next up was another day curve... another six glorious hours of doing nothing. The day before, my nurse called me and asked me not to take my hydrocortisone but I thought 'eh?' Wasn't this day curve test to check they'd balanced my medications right and to see if my cortisol levels were now at the right level? Anyway, she said she'd talk to one of the doctors and call me back with an answer... her answer was that I could take it. Turns out I shouldn't have. About half way through the day when I was seen by Dr Chris he said they weren't trying to see if they'd balanced it out right, they were still testing the effectiveness of Metyrapone, so by me taking cortisol replacement I've basically made all the results dud. whoopsy. He said he'd try and interpret the results anyway, but booked me in for a repeat day curve test the following week. This time with no hydrocortisone.

So the next week rolls around, and this time I brought my mum with me. She's better at understanding all those medical terms and is slightly more on the ball to ask any relevant questions. My nurse told me the week before to write anything I wanted the doctor to explain to me down, so I didn't forget, so we arrived prepped with another long list...

• Have I already started part of the recovery by weaning me off the cortisol?
  Apparently, no... they haven't put me on metyrapone to avoid the shock of lower cortisol levels, theyve put me on it to prep my skin tissue for the physical impact of surgery. Apparently if they were to operate now, when they cut away behind my nose, stitching me back up would be like 'putting stitches in butter', and they need me to be firmer in order for me to heal. 
• Am I going to have a catheter in my pee hole?!
  No... praise the lord!!!!! My mum had read somewhere that they can usually use a catheter as a way of monitoring urinary output as the pituitary gland controls some kind of hormone that controls the bladder or something. Turns out i just have to piss in a bed pan. (woo)
• Would I be under the care of neuro or endocrine?
  Technically neuro, but under the endocrine department of neurology
• How long will I need someone to be by my bedside answering to every beckoning call?
  I should be discharged in day 4 or 5 and I should be able to do things for myself straight away really, so having someone permanently by my side to do everything for me isn't entirely necessary (dammit). I'll just be very weak, slow and drowsy. 

and typically, I can't really remember many of the other questions. One of the first things I did ask though was to see my MRI and be formally introduced to the shitbag that's decided to set up shop inside my brain. I can't say I knew entirely what I was looking at but here are a couple photos from the scan: 

this one is taken as if my head is sliced in half, down the middle of my face... the tumour is somewhere around the white squiggle on the gray bit by the top right of the black section behind my eyes

and in this one, taken as if my head is sliced the other way (face on one half, back of the head on the other) the tumour is where the cursor is... he said you can tell because that side is bigger than the other. I dunno, I still don't really know what I'm looking at, but it looks cool and my brain is juicier than I expected.

Anyway so at this appointment they continued to monitor my blood pressure and just my luck it was still too high, usually reading around high 150s over low 120s, they decided to increase my dosage of amlodipine to 10mg a day. This brought my BP back down to normal readings, which for me was a milestone... I'd never had that before! But since starting the higher dose I noticed my knees and ankles were getting swollen and itchy. Fab. Just what I need... headaches, drowsiness, nausea annnnd kankles to top it off! Being the shape of a tree trunk isn't my preference so I booked an appointment with the doctors to see what they could do. And then, when I was standing in the same position for about half an hour, I looked down and my feet were practically black and my legs had turned blue! When I started walking around the colour came back but it was weird looking down and seeing what resembled a dead body. Kinda gross, but kinda cool. Anyway, so I went to the docs and now I have to switch to Ramipril and go for a check up and blood test (to make sure it's not killing my kidneys) in two weeks.

Oh and they also said that the results of all my previous tests show that although the metyrapone is doing its job, my cortisol levels are still higher than average. The results from the test I did when I accidently took hydrocortisone showed my cortisol levels were in the thousands... So its likely that my dosage of metyrapone will increase... Im tired of feeling crap all the time from all this medication and really wish surgery would hurry up! But I have a meeting with a neurosurgical team on the 21st March which isn't too far away I guess and I think they'll set a (near future) date then. And I'm making a pie tomorrow, so I guess life still has its perks.