Week 4 - 6th July to 8th July

So I had my operation on Tuesday morning having been admitted yesterday!  Then on Wednesday I was discharged again, carrying an extra 24" of tube.  Apparently, I have the feature on a semi-permanent basis.  Not quite sure what "semi-permanent" means but will need to find out about that at some point!!

So, Pam brings me home again and we wait to see how this revision has gone.

Turns out, it has made a major improvement.  I feel a lot better.  In fact, so much so, that I feel able to pop into work now and again.  However, it is summer, so not too often!!  In fairness, I am signed off, and all of a sudden I seem to be the busiest man ever with all sorts of follow up appointments, including lots of doctors appointments to do with the recent developments, the ongoing blood pressure carry-on, the ongoing hernia, etc, etc!!  I also decide to get my teeth sorted and generally get a cleaner "bill-of-health"!!  All good seems fine for now.

Week 3 - 21st June til 29th June

So another week slides quietly by!  Well maybe not so quietly!!  It was a busy week, culminating in another operation on my birthday (28th June).  I should have been aware that having an operation at the weekend wasn't a great idea!  Problem is, and there is no massive blame from me on this one, there are less skilled staff around.  I know they have standards to comply with and I am confident that the chap who got all dressed up to perform my procedure didn't really mean to mess it up!  But he did as it turned out and he didn't put a long enough drain on the end of the shunt he fitted!

 24" extension added!!!

To add some detail, I was in bed, on my back, for another week with a drain fitted all week.  The plan this time was to leave my drain in until Sunday morning, remove it pretty early, and whizz me off for immediate surgery!  I'm not 100% sure why it was planned that way, but it was and you have to go with the plan.   And to be honest I was well ready to have the operation done.  After a week of buzz, off, wee, buzz, on, it was all getting a bit much!  So I signed the authority paperwork and we planned the operation for Sunday morning!

At around 6am I was woken by a surgeon who came to remove the temporary drain.  That all seemed to go fairly well.  Then we had to wait a while for a recovery bed to be available before they would y are me to the theatre.  Not sure how long the operation actually was, but maybe an hour or two?  All seemed good and I was woken to be told that all was good and that I was back at the ward, rather than in recovery!  Two days later I was discharged!

However, the list of drugs they gave me was pretty long and I had to taken then either side of food, etc.  All a bit inconvenient, but I guess you make it all work don't you.  I also had 2 more dates in my diary, for check up appointments!  Today was the Monday, and I was due in for the first check up on Thursday, so not long to wait.  All was good that day and everyone seemed happy with my progress.  The surgeon who did the stitch and staple removal was the chap who'd done the operation, so all was well.  I came home but really struggled with a bad head and no energy.  And the following day the wound sites were swelling!   Pam and I decided to struggle on without consultation as I was due to see the main surgeon on the following Monday anyway.  We kept the appointment and Damien took one look at the job and threw his arms in the air.  He'd recognised a classic "shunt too short" reaction!  He booked me straight into the unit for a revision!  That revision involves a 2' (yes, feet!!) extension!  Apparently, it is coiled up neatly inside me!!  Delicious.

Week 2 - June 13th to 20th

So a week at RVI and no sign of going home.  Pam has been in to see me twice a day, every day.  She is the most dedicated wife I could hope for.

So it is now Monday afternoon and she has popped in to say hi.  Well we sit and chat for 10 mins then I run out of new news!!  Then I try to find stuff to talk about but it is tough as nowt really happens from one day to the next!  And making stuff up just doesn't really work either.  So we do have some longish silences!  I have spoken about them before but just so you know!!

We flick between subjects and explore certain things.  In fact, if only we'd discovered our mutual love if scrabble that would have been a great thing, but we didn't!  That has to wait till I come home. It's good when we get there but not just yet!

So what do you talk about.  Well turns out everything becomes so much more important.  My drugs plan is always interesting, and changes quite a lot!   Also, their plans for my ongoing treatment are always good, and today is no exception!  My head has become infected and they are worried about the swelling becoming too big.  Tomorrow they are planning to do a lumber puncture if they need to - I can't wait!!

Tuesday

So that we are.  It is Tuesday morning and guess what!!!  Costas has come to put the shunt in.  Today it is just a drain, although it's a nasty old job.  During the prep, I cough and spray him with CSF!  CSF stands for cranial, spinal fluid I think, although that could be wrong!!  PYou have to lie on your side, with your knees pulled up to your chest, in a kind of feral position.  Then they poke a needle into your spinal cord which is no fun.  Why?   Because they can't see where they are going and have a massive risk of hitting your nerve.  And that makes you jump like mad, and I mean like crazy!  As soon as they go off course, and hit your nerve, you can direct them as they just need to adjust their angle of attack.  But until there is a hit, we are all in the dark.  When they hit your leg just shoots away and they know they have hit something.  They are pretty keen to find out which side it was!!!  And I tell them straight away, although how they can't tell beats me!   Anyway, after a couple of millimetres adjustment he plunges the needle into the canal and bingo, off comes the fluid!!  They decide to drain me down to something like 10, although what they actually measure in is a mystery!!  So after about 15 minutes it's the drain in, they remove it and apparently all is good!  If only..

Thursday

So the lumber puncture worked, but only a bit and they now want to do another.  Great stuff, I am prepped again, back to foetal position and a new surgeon comes along.  I manage to avoid spraying him too, and just give him my full support!  Well he turns out to be 100% useless, and can't get into the canal at all.  After 15 mins of poking around he gives up and starts another attempt.  This time, straight in and no diversion via my nerves!  He drains more pressure and all seems good, until they have a chat later and decide to put me on a drain!

Well that is a different experience!  For a start off you can stand up, so it is flat on your back territory.   All fine until you need a wee, and believe me when I say that is a highlight of the day.  So for a wee you need to
1. Push your buzzer
2. Wait maybe 5 mins for a nurse, who can't do the job!
3. Wait another 10 mins for someone who can to come and clamp the drain off
4. Shuffle to the toilet, complete with drain on stand!
5. Wee
6. Return to the bed
7. Buzz
8. Wait for the wrong nurse, although sometimes you do get the right one!
9. Get unclamped!

So that's a 20 minutes minimum process I guess.  Well what else is there to do anyway?

Friday

It is Friday teatime and my surgeon pops to see me.  That's good I think.  He is doing his final round before he nips off for the weekend, but he has lined me up for something rather special.  He is keen to leave the drain fitted over the weekend and is checking all ok.  I am used to lying flat by now so I have no problem.  Trouble is, about 2 hours later the tube pops out of the hole and we have to call the out of hours chap.  When he come we chat about the process and he decides to leave it out.  Great, I knew my surgeon would be pleases!!  He wasn't! As the next blog tells you...

Week 1 at RVI, June 6-12, 2015

So, a whole week at the RVI and no release date yet.  So what is going on?
Well, it appears I have an infection in my head which has caused
1. Massive confusion
2. Weird reactions and conversations
3. General strangeness!

So what are they doing about it? Well, not exactly loads it seems but I have been moved around a few times now and will be staying a while longer.   This wouldnt be 100% accurate as I am sitting at home, some 5 months later, trying to recall a story that I am not really sure about!

But, let's try anyway!  So after week 1 at the RVI they have managed to do some tests on me and decided to do an operation today.  I get moved to the main suit where they will operate, which is interesting as they make me walk there!  Hey ho, guess that's a good thing!

I go through the usual preparation and they get me ready for a bone flap removal and general wash out!  All interesting stuff, which I hope you like!  The reason for the bone flap removal is that they think it could be infected and as it is fully disconnected from my skull, they cannot treat it with IV fluids, so it has to come out!  Strange when you think about it but I guess it makes sense!!

So that is phase 1 complete, although I have no idea how long it takes... Not as long as a full removal I don't think.  So, I get moved to a ward for recovery which is where it all gets a bit interesting!

Day 2 June 7th at RVI

Ok, so day 2 comes and goes?!  

I am not well, and the fuss continues but still a bit slowly!  The breakfast arrives at 7pm although at this time of year, fast approaching the longest day, it is light from around 330am.  Really.

So that wakes me as I sleep alongside an open window and the sun starts to shine down on me every morning.  It's a pain in the bum, but once you are woken by it that is it!  Every blooming day is the same!!  Hey ho, roll over, but it is really hard to sleep.

I doze, off and on, on and off...   It's all a bit dull but at least breakfast is quite early.

Today, Pam comes in, as she does every single day.  We never miss a slot and I owe her so much now.  And it is just beginning.   I have zero idea that I will be kept in as long as I am.  I really don't remember much being discussed today except a rough plan for the week ahead and the diagnosis of what "might" be wrong with me!!   It's all a bit of a game until tomorrow when the consultants come back to work!

So it's another wasted day really although the steroids have started to ease my head at last.

June 6th Day 1 at RVI

So there I am.  Sitting in the quiet room with an enormous headache.  Waiting...   For a doctor.   Or anyone who cares!  I am sitting patiently, but my head feels ready to literally explode.  I have zero idea of what is happening to me and care even less.  It feels dreadful.

I wait, wait, wait for hours.  It seems ages until a doctor comes to see me, but eventually someone does come along.  Now I am not going to get this very correct as I have a massive bout of confusion, so will need to check with Pam.

I think, after waiting for 4-5 hours I saw someone who was interested.  I am like a random person in the hospital, just wanting someone to make me feel better.  It isn't the greatest feeling you can have but you just want someone to make you feel ok again.  Well it doesn't always work quite like that, and this time it really didn't.  I was suffering and they weren't 100% sure what was wrong with me.  They knew it wasn't more tumour (I think) but what could it be?  Well, they needed to run some tests to be more sure.  However, on a Saturday AM there aren't as many doctors around and it's all a bit of a wait around.  A few nurses did come to see me, but didn't make much progress.  Eventually, later in the PM  a weekend registrar came to take a look and he did a few procedures, including taking a sample from the swelling (I think).  He sent it for analysis and said he'd come back and let me know what it showed.  Finally, some progress although not loads!!  I think he put me on steroids too but will need to check that too!!

Back at RVI

So I went in to the RVI in May for a routine (if such a thing exists) operation.  I think it was the 11th that I was booked for.  All went really well and I was in and out within 2 days.  Yes really amazingly just 2 days.  Wow, all good.  I remember as my sister Rebecca came to visit me and all seemed well.  I had been in from Tuesday til Thursday I think.  Becksie came to stay the following weekend and I was tip top.  It was Eurovision weekend and we had a party on the Saturday evening to celebrate.  Great fun, eating tea on the floor!  What a good laugh.  And all seemed well for a couple of weeks, but sadly things did take a downhill dive!

I had been getting a headache and been calling the hospital asking about options.  They eventually came back to say that the removal had been radio-narcrossis, which needed removing, but wasn't dangerous.  The best bit of news was that there was no need for any follow up after the operation.  So why did I have a bad head?  I pushed hard but was told not to worry, so I went out to a gig at the pub up the hill.  Well you do when they say don't worry don't you?  Well I did anyway!!  All seemed good and we'd been to see a band that I know, gave them a hand with the load out and ot dropped at home at 1.30am!   Like I said, all seemed good and I went to bed around 1.30am but was rudely awoken at 2.30am with a massive headache and a huge swelling on my head!  Wow that was sore and had come from NOWHERE!  I had to wake the wife and tell her.  She was pretty distressed and we decided to wait until first light to call the hospital ward.  They were very kind and asked me to come in ASAP, which we did.  And 3.5 weeks later I am still there!!  So what happened?