So long school, hello life.....PANIC!

So you turn 17/18 and you get your A-Level results.....and what a day that was!  I was so concerned I was going to do really awful I made plans to meet my 6th form tutor at the school gates whilst sitting in my parents car.  I could get my results and sulk on my own that way.  The thought of everyone telling me 'I had done so well, considering' was not appealing and it still isn't now.  I am well aware that I have achieved way more than 95% of people with brain conditions etc but when you have a mind like mine, it just isn't enough!

Anyway, I got my results...I think I knew I had done ok when I noticed the look on Mrs Hilton's face.....she told me how I'd done then pushed me back in the car, told me to go get changed and put some make up on (!) then get straight back there for the Journal and Chronicle to interview me.  That evening, we all went in to town and celebrated.  Those were the days where the place to be was upstairs in Flynn's on the Quayside and then over the bridge to the BIGGEST PARTY ON THE PLANET - Baja!  

That summer, me and the girls went on our first holiday with no parents!  Very exciting, lots and lots of fun and I have to just get in here that it was nothing like what you see on that BBC Three programme 'Sun, Sex and Suspicious Parents'.  Whilst being there, Little C and I celebrated our 18th's.  She's the day before mine so for a whole 24 hours we did nothing but celebrate and have fun until we were picked up for the airport to start the journey home.  That part is all a bit blurry.  My only recollection is eating chocolate fingers in the queue for check in and offering them around, then being told we should chill out or we wouldn't get on the plane!

Here's me and my Dame Allan's girls.  This is a more recent picture, there'd of
absolutely been hell on if I'd of used an old one!

So after an eventful summer filled with fun and great memories, I embarked on at first a HND in Music Theatre at Newcastle College followed by the 'top up to a degree' year at Sunderland University.  I am so pleased I did it that way, staying at home really helped, I had the support of my family and things were just easier.  Perhaps I did miss out on venturing down the country to university but I wouldn't of achieved much if I'd gone.  Secretly (being a massive lover of all things toon - not the football team though) I just don't think I would of managed 3 years being/living in Sunderland.

I also must do a huge shout out here to my school, Dame Allan's.  It really is a place where you feel nurtured and loved.  It's a bit like the 'Cheers' bar...."you wanna be where everybody knows your name".  The people are nice, the teachers are nice and I really feel so privileged to have been able to attend.  I must also add that in our leavers assembly I was asked to sing.  Actually I can't remember being asked, I probably demanded it or just invited myself, but that's the way it went!  I chose to sing 'Out Here On My Own' from Fame (obviously).  Great song, with lush lyrics!  Go have a listen to it.  For me, leaving Dame Allan's was like skipping through The Serengeti (I imagine, couldn't afford the insurance to actually go do that).....yeah so skipping along, singing something from Hairspray totally unaware of killer Lions!

One of our fancy dress nights, I'm the cat...

I have to say though, year 1 of college was a ball, pretty much just as I had imagined.  Not just a ball, like super fun 'doooooo' times with singing in hallways and pirouettes in the bathroom (that may of just been me).  Karaoke was ALWAYS on the cards (yesss!) along with fancy dress and added craziness.  I assume most people meet lots of like minded people when they go on courses and start degrees but in all honesty, a performing arts college was literally the most mental people all in one building.  No one was shy, it wasn't quite FAME but at some points it felt that way.  I met some of the most lushest people here, a good few fellow Geordies but also some of those 'Southerners' from anywhere past Sunderland....

Silly faces...

It's quite a nice opportunity to say hello to the many faces on these pics, I keep in touch with some of you but to all of you sending thoughts of happy times and lots of love!

Me and Teeny Bopper

This lady here deserves a mention too.  This is me and Tina on our way to Grotbag's 21st in Leeds, I've so many utterly ridiculous memories of that trip, it was a good one!  Sadly Tina passed away in 2011, people call me brave but this lady right here was far braver than me.  She's unforgettable and often in my thoughts, my fellow dodgy brainy!

So, then what happened.....I graduated with an HND, they let me out of hospital for the day to go to the Civic Centre and pick up my certificate.  I had a cannula in my hand, got a few pics and then went back to hospital!  I didn't make the ball that night, I was totally there in spirit though!  

Me and Matt

I should also mention it was at this time I met the man in my life, the big man, the tree monkey, the gentle giant.  He'll be horrified if I tell you all his secrets so I won't but I'll simply tell you he's the laid back calm one in the relationship.  The grounded one.  Without him I'd be like some kind of ...I was about to say manic nutter but I may be viewed as that anyway.  I'd be worse though!

I then started my first and final year at Sunderland University.  Many of the Newcastle College lot also came but I also made some amazing new mates, in fact the laughs didn't stop.  I met one lady; Kim (there were many names for that one, but we'll keep it clean) who was almost as mental as me.  We wrote a song for our final performance in a corridor, you know because corridors are totally inspirational places.  I think we both knew we were never going to be song writers but we'd written a half decent break up song that Taylor Swift would be proud of.  If you'd asked me a few months ago who Taylor Swift was, I'd of looked at you blankly but she was on something I was watching recently and apparently she likes writing songs about breaking up with people, so there you go.  With a bit of help from a pretty exceptional pianist named Andy, who funnily enough became Kim's partner, we'd written a whole song complete with music.  If you'd been there, you'd of laughed, I am smiling as a write this, it was all pretty funny.  The cringiest break up song, written in a corridor.  If Taylor Swift is reading this and you're after a new song, give me a shout, sure I can find it somewhere.....you'll love it!  

Sadly I'm not able to bang on about the various (slightly offensive) rubbish we'd shout and laugh about, some of you are too sensitive (annoyingly).  In fairness to me, I think am doing a bloody great job of keeping the language and sarcasm under controlled (another high five to me), if you talked to me if real life, you wouldn't be so lucky.  I'm a swearer and too sarcastic....you should all be getting to realise now that I don't care what people think.  It doesn't make me a bad person and in fact, the issue I have with swearing could well be brain damage (if only I could get a card for that) - get over it, I have.  Despite what many people think, swearing does not mean you have a limited vocabulary.  If you Google it, the world will actually tell you it's more that people may perceive you as unintelligent because you swear (it was probably someone not that bright who said that) when in actuality the problem there lies with the judgmental person not you.  More fool them.  One other thing you'll find is that people who swear are more caring and emotional.  Totally true.     

Anyway back to Uni and 'going radge (*Geordie word, means mental) in corridors'.....it was a year of not only hard work but of good fun and more opportunities to make memories.  You may of noticed I often go on about making memories, I try to make sure I make memories, planning stuff to do in life.  Little things though, not travelling the world or buying a Ferrari, just having a little experience everywhere you go.  I can see how that may sound weird but it's something you'd be more familiar with if you had an illness that could take you down any day.  It's not about the big things, it's about the journey....standing in the kitchen with your loved one cooking and being daft, that sort of thing.  

Just over a year or so ago, I got the awful news that Kimmy had suddenly passed away.  Not another total legend gone.....she's another awesome lady who's never far from my thoughts.  The world is a funny place.  I sometimes find myself thinking 'what the hell is going on'....like I'm living in mad hysteria mostly surrounded by lunatics.....  Anyway, to the left is a picture of Kim, me and Lizzie.  We're all looking very wrapped up, I'm assuming it was cold...

If ever there was a time to take a few minutes to count yourself lucky, now is that time.  Life is precious, you get one shot, fill it with people who make you happy.  If you're not happy, shuffle things about, make a change.  Never forget though that the grass isn't always greener on the other side and don't trample on people to get there.  I totally believe in karma and that will get you bad karma.  

'Don't be a banana, think about the karma.....' Me, 2014  

I know I've mentioned that it's likely I will miss really important things out.....well I just did that.  This was the year my brain surgeon sent me (reluctantly) off for Stereotactic Radiotherapy.  I say reluctantly as many very fabulous surgeons can't really see past the cutting thing.  It's not their bag.  I mean there's no real evidence that Stereotactic Radiotherapy really helps, it's my understanding (and it really is what I think) that they shoot this laser in, it's very precise, you're required to wear a halo (a big metal contraption, screwed onto your head WITH A SCREWDRIVER whilst you're awake)....and it creates scar tissue.  The idea was to stop the leaky vein I had, so to speak, from leaking out in to my brain.  Whilst there is no actual evidence to prove this worked, I have yet to have another major bleed and there is no evidence it didn't work.  Fingers crossed...

Here's a really awful picture of me modelling the halo.
It makes me feel particularly sick but if there was a time to share,
this is probably that time.

Getting the Stereotactic Radiotherapy was the first time I had to venture away from home (I mean Newcastle) for treatment.  I have to say here that I am so incredibly lucky and I can not stress that enough, to have brain issues in the North East of England.  The Neurology Department, now based at the Royal Victoria Infirmary but in the old days it was at Newcastle General Hospital is one of the leading National and International Neuro Centres.  In my 16 years of being ill, I have seen people come from all over the UK to have brain surgery here so I really do think myself very lucky.  

Anyway, the Stereotactic was in Sheffield.....me and my mum made the journey.  It was weird.  Being in a hospital when hospitals were so familiar but you didn't know anyone was pretty scary but it was only for 2 days so I coped!  I should probably also mention that you're awake for this treatment.  I think they do that so they know they aren't hitting any parts they shouldn't.  It sounds funny but it's true, I've only recently read a story about a man playing the violin whilst having brain surgery.  I think he may of been an actual violinist and so they didn't want to damage his skills.  I didn't play the violin, I did however sing 'Runaway' by The Corrs and various other songs most of the way through.

So that was that, onward we go.  Off to think about what to do next!  So many decisions, lots of stress but I knew I could make it, even if I plodded the whole way.....I love a good plod.  There's nothing wrong with plodding, some people dream big but some of us are happy to get from one day to the next without any excitement or drama!

Hello and welcome....

Welcome to my blog!

I'm Nina, aged 31, I'm a mentalist  Others may say I'm a creative wonder with a totally awesome sense of humour and a fabulous taste in music.  I agree with both, but favour the latter!

What I am not is a graphic designer, website extraordinaire or anything like that so please forgive any stray letters, I'm not worried about it so you shouldn't either!

 Maybe we'll all go on a journey through this blog, maybe not, but I reckon you'll all learn something about something.  Maybe I will 'find' myself, I've always wondered how one loses oneself in the first place and I wouldn't say I was lost but perhaps I'll find something.  I am hoping people will learn about living with illness, planning events and festivals, being dramatic and how to get stuff for free (much to the annoyance of everyone)!

In a very short paragraph, I'd like to tell you all a little about me!  That is nigh on impossible (the one paragraph thing not the talking about myself) but I will give it a go!

The Oldies!

I was born in 1983 (with most of the best people) to two wonderful, though slightly crackers, people.  I must give my parents a shout out, they've been awesome, and I owe many of my successes in life to them.  I was nameless for a bit until whilst ironing one day my mum heard them talking about the Royal Family.  In short, the Queen Mother's Mother was named Nina Cecilia Bowes-Lyon, she is sometimes listed as Cecilia Nina but as this is my blog we shall call her Nina Cecilia.  A name is pretty much all I share with her though, she was deeply religious, a keen gardener and embroiderer - I am none of these things!  She was however a gregarious and accomplished hostess which I'd say I was too!  I'd like to have been a member of the royal family, by that I mean, I would of loved being a princess, I mean, I am well aware I am one anyway but I just haven't got the blue blood.  Mine is definitely red, I've seen it!

So, back to me.  I was going to try and write this blog in an orderly fashion, but that's not me in real life (though it is in work) and just like if you were talking to me in real life, a conversation may spur up a song that needs to be sung or some random bit of comedy genius. I've said this because 'back to me' reminded me of something but I'll leave that for later.

I had a pretty normal (I did move around 12 times up until I was 12 but that was pretty normal) life growing up, I got to see some beautiful parts of the country and some very large and posh manor houses.  Dad was a Head Gardner but we returned to Newcastle so I could be settled in a school before doing GCSE's and what not.  School was great, I made some amazing friends who are still part of my life today and I've recently returned to run drama clubs, we'll get more on to this later but being back in a building where life changed so much is rather strange.  

So, life was smooth and easy, I would say I didn't have a care in the world, knew where I was going and what I was doing with my life.  At the age of 14 I began having intermittent headaches, they progressively got worse and began to affect my eyes until I had permanent double vision.  By this point I was 15, obviously I had been to both hospital and GP at this point several times but it isn't really about them, there's a huge lack of awareness for brain injuries and this is a battle that needs fighting and is being fought, just not by me.  It's a horrible situation, I almost lost my life by the time someone was listening (to my dad swearing and generally being angry in a&e) but you have to put things like that to one side.

At the very end of August, a couple of months after my 15th birthday I was eventually admitted and scanned at the hospital.  I had a large and damaging bleed in the centre of my brain, that's the Pineal region of the brain should anyone want to investigate.  I was very very ill, I had a huge amount of pressure and water on the brain (Hydrocephalus)which was down to the damage that had been occurring in my head.  At this point, the damage caused was irreversible and left me shunt (brain drain) dependent.  

What the hell is a Shunt?

Well folks, to me it's life, everything but at the same time a right pain in the ass and a constant reminder of being ill.  In basic terms, a shunt is a tube which drains excess Cerebral Spinal Fluid (CSF/Brain Juice) from the brain to my stomach.  In 'normal' people (ha,must laugh) there's a natural canal in your brain where CSF flows.  I suppose you can think of CSF like oiling the Tinman (yes, this is the first thing that came in my head), just a bit more extreme.  Like if the Tinman wore a space suit filled with oil so he never ceased up.  The CSF keeps your brain nice and fresh (I totally made that up but it sounds good).

So, to conclude our shunt discussion, shunt = life?  Ha, well, not quite all of the time.  Sadly the downside of shunts is that they can block.  It's not uncommon for what I like to call 'brain fluff' to get itself stuck in my shunt resulting in horrific headaches once again, poor vision and vomiting.  So, as I am writing this, I've had around 8 or 9 brain surgeries, I honestly lost count at 4 and narrowly avoided more surgery recently.

Aside from regular headaches and a few other things, having Hydro has affected my eyes quite badly.  As I've mentioned I had double vision which finally became permanent, I spent time wearing awful thick contact lenses which would block site in one eye but sharp got sick of that and demanded my eye doctor do something.  I say demanded and I really mean it, I don't beat around the bush, I walked in to his office, told him if they didn't sort it I would get a fork and stick it in one of my eyes.  Sorry for that vision, not a nice one but anything would be better than double vision for life.  I should mention that before my somewhat mafia style demands, eye surgeons tried twice to fix my double vision but sadly it never worked.

Not long after my somewhat horrific demand, my wonderful eye surgeon came to me with a new idea, they'd not done it before but it could work and I was up for giving anything a go.  In simple terms they put a black lens inside my eye behind my actual lens.  It's like a cataract operation but instead of taking something out, they put something in.  Anyway, great news, I was blind in one eye.  Hurrah!  Funny thing to celebrate but I can't remember another time I have been that happy.

Pre 15 I was calm, studious and I aimed to please.  Brain surgery changed me, I returned from a coma and major surgery with a massive attitude!  Not always a bad one, but I am not the kind of person to beat around the bush, I am one of the most honest people you will ever meet.  I've a huge sense of determination and although I am unable to work full time, I've had to deal with my illness affecting all areas of my life, I try to look forward and plow through!  So, please excuse me if I don't appear sympathetic about your sniffle or your grazed knee, I'm just more of a 'give sympathy when there's life limiting problems' kinda' girl!

Some may say I'm a tornado in the calmest place on earth, others will say I get the job done, a proper do-er. Either way, I say what I say, I swear too much and get very frustrated with those of us who float around in life!  I don't have time for that and you shouldn't either!

Thank you for reading my first blog entry I look forward to letting you all in to my career and all that in my next post, but for now, so long friends X

"Life may not be the party we hoped for, but while we're here we should dance" Proverb