This post has been a long time coming. I have been meaning to get this online for quite a while, but as usual life conspires to make everything take ten times longer than you intend. Anyway, as many people who know me will already be aware, I spent a considerable part of last year being wrapped up in having a brain tumour - it kinda set the tone for 2018 for me. 2018 sucked.
I had been having severe headaches for a few months, which for some reason I assumed was down to sinus issues, or at one point carbon monoxide (lol). I jokingly said to my work colleagues that I probably had a brain tumour, and I promptly called him bob. Little did I know at the time how close to the truth I was!
The notes below pick up from the point that I started keeping track of my journey through the NHS. There is a lot to read, but I wanted to have it on record somewhere. If you can't be arsed, I'll add some pre and post op MRI scans at the bottom to gawk at.
It's quite amazing how well things went, and how lucky I have been, despite this epic shitstorm of brain failure. I truly am lucky to have come through this whole thing as the same person who went in, with no real disabilities other than those I had before the poop hit the fan. At the same time, it is quite disappointing to have not developed psychic abilities or randomly woken up being able to speak another language.
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Sunday 15/04/18
optician appointment at boots couldn't find reason for double vision - referred to a&e. They sent me to eye hospital emergency (open upstairs on weekends). There weren't many staff. Duncan (grumpy) told me to come back tomorrow when a doctor would be in and they could do tests. Said optician should phone ahead and not just send people.
Monday 16/04/18
Went to eye hospital outpatient section, waited in there for four hours whilst seeing various nurses and having tests done. Fundoscopy done twice at this point, once by doctor Stephania and once by a nurse. The periphery eye test was repeated (did at optician but they wanted another go). Eventually sent to a&e as stephania said it looked like there was swelling at the back of the eye and she recommended an MRI scan.
Walk up the hill to a&e, book in. Rude nurse says there was a mix up and stephania has probably gone home, thus I won't be having an MRI as it is tough to get one 'after hours' it is about 6:45 at this point. No one knows who she spoke to. Talked to x-ray nurse Laura (seemed very nice) and she had heard nothing. Neither MRI room had been notified. Waiting a while, eventually have CT scan rather than MRI. First cannula put in - CT staff very friendly and efficient. Scan only takes five mins. Later consultant Barden talks to us about the abnormality in the scan - says I need to come back tomorrow for more complete tests. At this point it's about 8:30 and we have been in hospital since around 1. He says he will get someone to remove the canula and we can go home for the night. He subsequently comes back in looking for his lost lanyard and forgets to get a nurse to remove canula. Kim has to go find a member of staff - male nurse is nice, says Barden tends to be forgetful!! Barden's attitude during whole experience is bizarre, uncaring and uninterested. Did not give a good impression for a senior member of staff.
Canula for contrast in preparation for my first CT scan...
Tuesday 17/04/18 - before 9:00
Head in, Barden has told us to go to emergency ambulatory care - didn't take time to explain very well where this was. I made a note on Monday whilst being in shock, didn't really know what he was saying, ha! Luckily we found it because we are awesome. The nurse (Joy) at the reception says Barden should have told us to register at a&e first before coming down - she seemed annoyed and said he should know better. He seems to be known for ignoring rules and procedures! Go to a&e, register once again and give all the info I gave yesterday. Go back to ambulatory care. A nice Spanish nurse puts in canula number 2, did a very good job, feels fine. She took two vials of blood for tests.
Have first MRI on brain. The technician Simon seems very surprised to see me! He has a backlog and a child to scan so I am waiting about an hour. Finally get it done and head back up to ambulatory waiting room. We wait for quite a while. We speak again to Barden, he examines me. Says there is a tumour, doesn't give a good explanation and doesn't show me the scan. Says the neurosurgeons will be in soon to discuss with me. Me and kimby are both quite upset - Joy notices this and puts us in a private room and brings us some food - very sweet of her. Later we speak to registrar Gurung - very nice guy, gives a much better explanation than Barden and shows me the scans. Much more reassuring. Barden proceeds to barge in and complain that Gurung should be at the 12 o clock meeting - Gurung says not to worry and continues explaining to us. He gives us an idea of what will happen but says the neurosurgeons can say more. Later registrar neurosurgeon Bernadette comes and speaks to us in more detail. Explains I will be unconscious for the op which I'm very relieved about!
1:40 in eye hospital - mix up, did not need to be here, no tests made. Waiting 40 mins for a porter to take me back to the ward, when I am fully capable of walking. At the same time, receiving two texts from nhs asking if I'd recommend the service...lol.
Waiting in the eye hospital. Endless joy.
Approx 4pm Barden comes and explains I will be admitted today. He says he forgot to mention he should have told me to bring an overnight bag. Luckily Kim is an organised woman and already made me bring a bag in, so I'm set! The lovely nurse Joy takes the time to walk us to the neurology unit and show us where we are - first member of staff to actually guide us around this maze!!
Some crazy booby (according to Kim) doctor comes around and does more checks and takes four more vials of blood - I asked what happened to the earlier ones and apparently no one knows where they are so she is going to take it all again. Can't use the canula cos it has goo in from MRI so she pokes me in another vein on my right arm, this is pretty painful, she wasn't very good. It hurt for a few hours afterward. Her demeanour was pretty false, didn't really like her. Not seen her again.
For the first night I am in side room A in level 8A west wing. It is nice to have a room to myself with my own shower and bog! The weather is hot and I have headaches off and on, but not very severe. I feel quite a lot of pressure in my head. I'm woken every two hours for checks/blood pressure and questions to make sure I'm still lucid. Did not rest well this night because of this. Bernadette comes in at 11pm and wakes me to say that I will be in surgery the next day, so I am not allowed to eat anything after 12pm. She mentioned the eye hospital but I was half asleep and not sure what she said. She said the surgeons should be by at 8am to talk to me.
Wednesday 18/04/18
supposed to be operated on today. No sign of surgeons at 8am. At 9am, I am told I'm going to the eye hospital. Again. I told them we have had all the tests. They take me anyway. This meant I missed the ward rounds with the neurosurgeon who could have given me more information, so I spent another day in the dark. Whilst at the eye hospital I spoke to Stephania, who was pretty flabbergasted that I was back. She was understanding and quite nice. Kim got quite grumpy with her the day before :) she apparently rang the hospital back and said that I do not need to be going back to the eye hospital any more, and she has updated my notes so there will hopefully no longer be any wasted trips...
Waiting for MRI, supposed to be 4pm. Porter turned up around 4:30. MRI technician Simon said someone took the appointment off the board, then put it back on. No answer from the ward when MRI tried to call. This was the spine MRI. Once again, Simon just had to shoe horn me in, as I wasn't expected.
Roberto and another lady came into my room, randomly told I am moving from side room A to ward 7 with no warning. Had to pack up my shit on the spot and move. Literally within about a minute because a lady was coming up and there was no space on the women's ward.
Night time in the ward is kinda shit. Stink of piss and farting and talking and snoring meant trying to get to sleep initially was hard. Finally they turned the lights off at about 10:45 I think. Impossible to sleep with the lights on. Will ask for an eye mask! Managed to get a fairly decent uninterrupted sleep until about 6am, when we all get awoken for paracetamol and blood pressure checks. Then before 8 they are wanting to change bedding and give awful floppy toast for breakfast, made me feel quite ill!
Thursday 19/04/18
slept really well today - parents bought a fan which made the ward a lot more bearable. Headaches are less severe than they were, feel more rested than before. Think my blood pressure is better. Had a proper talk to Bernadette for the first time since Tuesday. She said the consultant is meeting in haywards Heath to discuss my operation with radiologists etc and I should hear back later today or tomorrow morning on the ward rounds. I asked about the pressure and she put me on ibuprofen to help with the headaches. So now I have paracetamol, ibuprofen (after food) and another tablet to settle my stomach for the ibuprofen.
Dexamethazone (steroid), Ondansetron (anti sickness), ibuprofen and maybe more!
Friday 20/04/18 - 10:00
spoke to neuro registrar Ahilan, he gave me a detailed account of what potential complications to expect of the surgery, a detailed account of the procedure and potential recovery times depending on how well the operation goes. He was very good. Spent the morning resting and talking to kim, she left about 12.
14:00 taken down to MRI, found out the wrong patient had been brought down...another wasted trip. Have to wait for porters to take me back. Apparently two other people from 8a west are due to come down, neither of them are me! Got back at 14:52 - another nice friendly porter
Eyesight seems worse, objects in distance are more blurry. Noticed blurring in my peripheral vision. I have been put on steroids today to help swelling, hope this will reduce pressure in my head. At the moment I feel pretty good except for my sight.
Consultant neurosurgeon Norris came and spoke to me in the afternoon - he also seems very good. Did a few basic checks for balance, responses etc and then spoke to me, parents and kimby regarding the operation. I asked him about the repeated trips to MRI, he seemed to think the scan they had was good enough, but if they need another it won't be until Monday or Tuesday before the operation. He said I am scheduled in for the whole day in theatre, so barring any emergency treatments I should be going in, though there is a 1/3 chance I won't! If I don't go, surgery will be delayed til next Tuesday! I hope this doesn't happen! I told him about the eyesight, he didn't seem concerned. He said it should recover. He also said regarding DVLA and driving, this all depends on how successful the operation is, the main deciding factor being whether I develop epilepsy. Ahilan told me I might not be able to drive for a year but Norris said that was unlikely. Feel confident in Norris as a surgeon, his opinion on the matter is the same as mine, best to remove all we can.
00:00 - at midnight new arsehole next me to me comes back to the ward. He is a real douchebag to his Wife, speaks to her horribly. Apparently he is the double bass player in the Worthing orchestra. Also, new Spanish sounding guy in bed 3 snores like a fucking zombie! He woke me up at 3, didn't stop until about 4:30, sleep felt very interrupted. Woken up on the ward around 6:30 for blood pressure.
Saturday 21/04/18
Doctor came around at 13:20 - new guy I haven't seen before, no real news. Asked about favouring one eye over another, he said it doesn't matter.
I have noticed weird after image type circular blobs in my eyesight, most noticeable when I close my eyes and just after I open them. Seem to fade more as my eyes are open longer. They are just off centre in each eye.
Sunday 22/04/18
Nothing much happened today - snoozed on and off. Ahilan came and got me to sign the waiver, said I wouldn't need any further MRI scans. They will have a meeting Tuesday morning at 8am to ensure I can get a bed in ICU or whatever it is after the operation. He believes there is an 80-90% chance it should go ahead fine.
Monday 23/04/18
Ladies came to take blood about 11:30 - hurt like hell! She cocked it up and had to juggle the needle around, so achey now!
14:00-14:30 spoke to some very nice medical students about my condition, was good to speak to them about it. Invited them to come back and see me again :)
Tuesday 24/04/18
The last thing I remember before surgery is the morning of Tuesday, just before I was anaesthetised! I had a terrible night's sleep, there were two new guys on the ward who were either making noise or shitting the entire night, I felt really sorry for the nurses. The whole place smelt like shit mixed with the cleaning goop they use on the ward. Typical this happens on the night before my surgery! The next few days until Saturday are a complete blur.
Morning of the operation. Worst night's sleep of the entire time I spent in hospital!
Prepped for Surgery! I'm squinting because of the double vision
Saturday 28th April
The first day I actually remember after the op. Was still a bit blurry.
Sunday 29th April
Not much to mention, spent the day mainly with Kimby and John one of the tracheotomy guys, sounds like a zombie. Seems a nice chap though! Can't really talk thanks to the tracheotomy, but he seems alright. Not really spent much time with him before.
Monday 30th April
Spent the day in the 'hotel' wing where the restaurant is. Was alright - spoke to some nurses I like and a few patients, not a bad day, fairly uneventful though. You can tell I'm kinda delirious/not 100% there at this point, I wasn't really making much sense, and texting people weird stuff! What the hell do I mean by hotel wing?!
Tuesday 1st may
Moved back to the ward after being pushed around all over the place. It is a huge juggling act it seems! All reliant on post op beds! A lot of people being juggled around for ops whilst waiting on beds! But 95% of the time is waiting around and sleeping. Guess the real issue is getting a ward bed to help in the cause, once you have a ward bed it seems a lot easier and less hassle. It's only been a few weeks for me, some people say they've been waiting 18 months for ops! Feel like I was lucky to be diagnosed and operated on so quickly.
Think the staples in my head are being taken out today, not looking forward to that! I assume it'll only be a five minute task, hopefully not too painful....think there are about five or six to remove...hopefully I won't really feel it...there were actually more like 20 staples! Some hurt but weren't too bad to get out.
Some pretty gnarly CT scans of my head soon after the op - pretty mental swelling going on. Plus, you can see my skull flap!
A lot more staples than I anticipated!
A nurse kindly helped me take a photo of my knackered bonce
Wednesday 2nd may
Getting discharged today! Seems very sudden and unexpected! Got a feeling mom was pressing to take me back to Devon....
Saturday 5th may
Back in hospital in Portsmouth! spent most of the day sleeping! Given some paracetamol tablets around 9pm! Attempting to get back to Devon didn't go well! Think I will have to stay around here in the meantime. Currently at Portsmouth, didn't get very far! Want to go back to brighton where they know my situation. Think I might get transferred in the week. So we made an attempt to get back to Devon, but halfway there I felt sick and started throwing up all over everything. I ended up being admitted to Portsmouth, which isn't the nicest of hospitals. Don't think they really knew what my problem was - turned out I had too much cerebrospinal fluid rolling around in me, so they had to lumbar puncture some of it out! This only happened once I got back to Brighton.
How my family found me in Portsmouth. It wasn't great ha.
Sunday 6th may
Dr Yao says I should be able to get discharged today! Shouldn't be a problem to travel to Devon if I want to. Thinking back, this seems crazy as they still hadn't found out what my problem was - think after this point they spoke to Brighton who recommended I go back there.
Monday 7th may
Back in brighton! Don't remember much, think I slept for most of the day!!
Tuesday 8th may
At Stanley's house, spent most of the day sleeping!
Thursday 10th May
Spent the day in the clinical decisions unit at brighton
Friday 11th May
Admitted to hospital again
Lumbar puncture (Bruno) Luckily I was kinda out of it for this, but by the sounds of it I was making quite a lot of racket. It felt a bit like someone grinding a metal bar against the bones of my spine whilst being winded at the same time, kinda hard to describe. I understand why people don't like lumbar punctures! I did quite a lot of moaning and groaning, ha.
Monday 14th May
Feel a bit more normal today - time is going slowly! Probably a good sign? Been told I should be able to get discharged fairly soon!
Tuesday 15th May
Managed to poop this morning! Which was a relief! After the surgery, pooping wasn't easy! Took a few weeks to get right!
Wednesday 16th May
Discharged from brighton hospital...again!
Wednesday 6th June
Went into eye hospital - Victoria Barrett is sick today, no notification from anyone. Came into brighton for essentially nothing. This surprises me - I couldn't get a simple phone call to say there was no point in me coming in, yet the NHS text you to confirm your appointments as missed appointments cost them £160 a time!
after this point, I had a few more appointments at the hospital, and some more checkup appointments with Norris, which brings us basically up to speed. You can tell I was pretty out of it after the operation, as the notes are very basic and generally gibberish! Apparently I was texting all kinds of random things to people...
Here are a few scans before the operation:
And here are some before and after comparisons:
The latest news is that it looks like 99% of the tumour has been removed (they can't say it is completely gone for obvious reasons). With any luck my visits to the hospital will become less and less frequent as long as there is no new growth. I have to say, most of the NHS staff were incredible - the porters at Brighton hospital were all awesome, the ward nurses and healthcare assistants were epic and the surgeons did a great job. They all really looked after me. With the exception of the initial few days in A&E, I consider myself very lucky to have had such good care. I will revisit the hospital once I finally get my licence back, so I can thank all the good folks at Brighton in person.
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