Anniversary Day : 70% complete

Firstly my up-most apologies for leaving such a massive time between my last post and this one, I had been meaning to do a big update for weeks but with work going so well (and subsequently me working more and thus being tired a hell of a lot of the time!) its basically slipped past me or I have lacked the required energy to do anything. So with my minor “The Sun style” apology out of the way* lets get on with the update.

I am gonna attempt to keep this in a somewhat chronological order as that seems to make sense to me. Basically when I last left my avid readers I had just returned to work (yay!) but in a thoroughly George RR Martin way I left you hanging by a thread as to what actually went down from there onwards.

I've basically gone from around 8-12 hours a week and no responsibility to slowly working my way back to my old role of being a shift manager and only being about 5-6 hours off a normal full time week for someone in my position. I was very much like a lost little lamb for the first few weeks and then thanks to the familiarity of my job (its now 7+ years for me) and my workmates/customers I came back out of my shell and rediscovered some much needed confidence and more importantly a large part of the person I thought had died that fateful day of my rupture.

Above is my wall planner, the green dots are work days, as you can see they have increased a lot!

I know that may sound a bit OTT to someone who has not experienced a brain injury, its hard to explain how disconnected you feel with your own thoughts and body post injury. Its like waking up one day and discovering that everything you ever knew or did has been experienced by a totally different person. You remember large parts of that person and those experiences and yet it still doesn't feel like you. Its a thoroughly confusing thing to even understand yourself, let alone explain to someone else. But I digress, thanks to work I have begun to rediscover a lot of myself again which is fantastic. There's still some way to go, and there's still a lot of daily problems (which I will detail later) but overall I cannot be more pleased with myself, and for a perennial self hater such as myself its a bit bizarre to feel pleased and proud of myself but I am.

Another fantastic thing happened for me at work, a few months back (and I did intend to blog about it straight away) my speech therapist from Rehab came in for a social-able beverage with his friend. It was the most amazing feeling for me throughout this whole experience to have someone who helped me back to where I am now come into my workplace and get served by me. He even allowed me a big hug! Even thinking about it now still makes me smile. I got on with a lot of the medical professionals in the Kings Lodge Rehab unit at The Royal Hospital Derby but my speech therapist was the one person I could truly say I bonded with, we have a similar sense of humour and equally impeccable music taste so you could say on my part it was a bit of a bro-mance. But it really hammered home to me that day just how far I have come in such a short time. Even up to the point of surgery I really doubted whether I would be able to go back to work at all, let alone work back up to my old role, and now I am doing both of those things I still cannot quite believe it.

Above is a after and before photo, just to prove that i am getting more beautiful, what a difference a year makes!

My job is a Shift Manager in a fairly busy pub working for a large pub chain (which shall remain nameless) and requires a lot of skills to do well. Its no rocket science mind, but it requires excellent time management, multi-tasking, interpersonal skills and physical strength and endurance. You're basically on your feet all day, dealing with both customers and staff. You manage money, time, products and yourself. And its full of noise, light and people. It is essentially the worst environment for a healing brain to be in, due to the masses of information constantly being bombarded at you all the time and the physical exhaustion the job brings. But I am still managing to do it well again, so once more I'm forced to be proud of myself.

That's not to say it does not have its pitfalls to it. I am left after most shifts in a lot of pain, both physical and mental exhaustion as well. Its difficult to get this point across to people because at work my quality of work has remained high, but for me everyday and shift at work is a big challenge. The main problem is my lack of energy, do not get me wrong compared to a year ago my energy has increased massively but its still nowhere near what I would describe as normal. I think when I say to people that I am tired they just think “hey I've been to work and I am tired too” which is fair enough, but life with a brain injury means most days if you are lucky you start at about 66% energy and that rapidly depletes pretty quickly.

Why? Because of what happened to me, my brain has to try that much harder to do just the simple things. I have noticed that as I get more tired at work, my left side (The side my bleed really shat on) gets really very weak and I feel as if I am going to fall over a lot, which for a 29 year old man is a sad thing to think whilst sober. I also from that have to think a lot about walking, I know that sounds insane but as my energy drops I seriously have to think through walking, its a skill I have learnt since I was a wee nipper (rumours I was born with a beard are untrue!) and yet here I find myself as a grown man having to actively think about walking so I do not fall over. It feels ridiculous to type as a sentence but its true. I also get a lot more headaches from work, which I am assuming is just me over-doing it. So I'm sensible about it now, if I feel faint or especially painful I go take a breather and then try to go about things a little slower if possible, however due to the nature of my profession its somewhat difficult sometimes. I am however determined to not give up, I love my job most of the time, I am a type of person that thrives on personal contact with people and it turns out I'm so good at my job in the first place that even after having a large bleed in the brain and subsequently brain surgery I can still do my job pretty well. Thats nice.

So a lot of my time now requires extensive energy management, I'm as bad as a iPhone for rapid battery level dropping, but it's something I am very much getting used to. That said everything in my life is pretty good at the moment something I never thought I would achieve again, I have a good social life again, I'm pretty much back at work full time, I'm losing some much needed weight, regaining self confidence, and beginning to trust my brain again. I'm still in a rich vein of musical creativity too and I fully intend to finish an album of music before the year is through. So everything is really good.

As I type this now, today is in fact my “Anni-versary” something that brain aneurysm survivors tend to use as a phrase to celebrate the fateful day it all changed. My rupture took place pretty much a year to the day today, in that time I've been through so much (most of it detailed in this blog) and whilst I would wish I could have learnt a lot of these lessons in a different less painful manner, still I am pleased I can say I have taken something good from this whole experience. Its insane when I try to think about it all because its all both a mixture of yesterday and a lifetime ago, but I remind myself its been just a year.

And what a year its been, I'm going to have to work hard to top it! In a year I have re-learnt how to talk properly, re-learnt a lot of my cognitive functions, gone from having to actually write what day it is to know what day it is, having brain surgery, relearning how to play guitar and watched Man Utd go from a bit rubbish to a bit less rubbish (can't have it all!) so overall i'm pretty pleased.

My blog title refers to “70% complete” which is a nod to rehab (where my journey really began) and in rehab one of the (I'm assuming) psychological techniques they use to measure you is to ask on a scale of 0-100 where you feel you are in your rehabilitation. 0 being not fixed at all, 100 being back to normal. I always hovered around the 50% or so line as though I rapidly improved in rehab I still felt very broken then, mainly because A) I knew so little about my condition and B) Did not know how they would “Fix me”. I'm pleased to say I now feel around about 70% complete, which is an improvement from before. I think the remaining 30% will come when I get the all-clear of being AVM free and when my energy levels start to get back to normal.

I really did not know how I would feel today, I was not expecting some kind of revelation nor total sadness, perhaps a mixture of both. Mostly it just feels like a normal day with a bit of extra celebration thrown in too, and that's just fine with me. Here's to many more normal days to come! One good thing about hitting the 1 year mark is that my re-bleed chances start to drop down to the base rate (3-4% ish a year I think) whilst its no exact science it is reassuring to now that I can be a little less scared now.

Finally I would like to thank from the bottom of my heart ALL the people who managed to get me to this point today, its been an incredibly tough journey, the hardest one of my life but I do know I would not have been able to get here now without everyone's help, support and love. So thank you, I would like to think you all know who you are, but if you think “Did I help?” chances are you did so thank you!

That's about all for me for now. Now turn this bad boy up!

*A sun style apology is generally printed in exceptionally small font on the the bottom of the page

Back to Work, Back to Normal?

So I have been a little quiet between my treatment post and now and for good reason, I have officially returned to work! Something that even as recently as March I really doubted I would physically/mentally would be able to do! It feels like a massive step forward, i'm not gonna lie its been super tough (as I knew it would be) but it certainly feels like a fear beaten or rather beaten back (its still there a bit) as it is the scene of the crime for my rupture.

Above is an artists impression of my first shift back

Its probably been the most mentally tough thing I have had to deal with for a long time, I was VERY nervous for my first shift back as my confidence in both my body and brain is still at an all time low. Pleased to say that my doubt in myself was unfounded, I did pretty good and received compliments from my fellow managers as to how well I am doing which is really nice and good for my confidence. To be fair even I didn't know what I would be like at work, so for my fellow workers I guess that was two fold!

I have suffered a lot of what is called Neuro-fatigue lately which if you want a better explanation of head here: http://www.braininjury-explanation.com/unseen-consequenses-of-brain-injury/neurofatigue

Its essentially feeling exhausted constantly due to your brain having to work that much harder to just do normal everyday things. It's difficult but due to feeling it a lot previously (when I was in hospital and especially when I first got out) its something I am aware of and am used to.

Sorry Dolly i'm not yet ready to work 9-5

I've now completed 5 small shifts back, all of which have left me dead on my feet afterwards but I have still enjoyed it immensely. If there is one (well theres many) over-riding bad thing about my type of injury its a feeling of disconnection with your fellow people, not just because of the cognitive/emotional difficulties it has given me, you suddenly find yourself feeling somewhat sub-human (or I have) because of your injury. I know I have always been a bit of an odd-ball which i'm cool with, but to feel less than human is a horrible feeling. I know its fairly irrational, silly even, but it still resides there unfortunately.

Between returning back to work, relearning how to make music and subsequently making said music I have again started to feel human again. I would not go as far to say normal, but more like the me that I was pre-injury, which is a confusing mixture of happiness and sadness of what I really was like. My wit and humour (described by others may I add) is still there but its just not quite as rapid fire as it used to be, which saddens me but hopefully one day my old noggin might repair itself enough to compensate. I still mourn for the old me, I still get very upset at all I have lost but every little gain I make now I appreciate that much more. Every little step back to becoming something resembling what I was is a major victory for me, and I know I enjoy the simple things much more than I did before, probably because of the flirtation with death.

This is NOT what my social life is like anymore (or ever!)

Thankfully relearning my music has been amazing for getting a lot of these frustrations and feelings out in a form I can understand and relate to parts of me. A feeling of emotional isolation is somewhat commonplace in AVM survivors (especially ones I have spoken to) which all things considered makes total sense, you've been put through a horrific mental episode and then asked to get back on with things which I guess nicely brings me to my next point.

Please note this is not aimed at any one person, but its a point I feel I must make just to get it out of my system

Someone tried to tell me the other day that "you can't use that brain injury excuse much longer" like now I'm out of the danger-zone (mostly) I'm all healed. It made me laugh how little they could understand of my situation, so I had a mental rant against them and made a mini list of what i would like back which you can see below:

1) When my peripheral vision returns

2) When my fatigue stops,

3) When my left side feels like it's part of my body again

4) When my mind returns to something resembling what it was before

I will happily drop my "brain injury excuse" until then I will use my "excuse" and wear it like the badge of honour it is. I'm a bloody survivor, no one will take that away from me. Until that day happens, I will understand and try to make others understand.

Which brings me to a slightly different but related point, some people have said I am obsessed with my AVM, which I am quite happy to admit I am. I feel if I was not it would be a dereliction of care to myself, but keeping with my new feeling of rather than getting angry I feel I should try to help make people understand, love is better than hate right?

So I mentally came up with a little analogy to try to explain the effect an AVM has on you mentally so people could understand.

So imagine someone real close to you, whom you have been friends with your whole life, someone who has shared your hopes, your dreams, your successes, your good times, your bad times, literally every emotion or memory you have ever had turns around one day and tries very hard to kill you?

You remember the attempt quite well, you will never forget that initial pain because it was that painful, the next weeks you have no memory of, just flashes here and there. You know something incredibly bad happened because you remember your confusing painstaking rehab process. You remember having speech therapy because at one point you could not talk. You remember the physical therapy because your left side suffered so much. You remember the effect it had on others because its written on their faces everytime you've seen them since. Even if you don't remember everything, the attacker handily left you with physical and cognitive reminders so you could remember it.

So what happens next? Instead of your attacker getting righteously locked away as far from you as possible, instead it gets locked inside of you, silently awaiting its next moment to strike. You are left with full knowledge of this, that's why its called a “ticking time bomb” you know that potentially even the most harmless of things you do could cause your attacker to have another go, even when you're on the fucking toilet (no man should die on the loo!) you know that the attacker is increasingly likely to strike again within one year of its first attempt, you know that you have little control over any of it, other than trying to live as well as you can so the attacker does not strike again. You are relatively young, you want to live but inside there is an inertia crossed with a paralysis of “Is today the day?” “If I do that will it kill me?” but still you try to live your life and get as much enjoyment out of things as you can because until the attacker is gone you truly do not know how long you have left. That my friends is what life is like for me (and probably many others I imagine) with an AVM.

Above is a man who DID die on a loo, not from an AVM though, poor bugger

Eek, I feel bad if I left things there, but I really needed to get all of that out of my head and written down. I would like to add in terms of recovery I continue to improve, perhaps not at the rate I would like but I am fully aware that my recovery will be measured more in years than months. I still suffer day to day with headaches, confusion and a terrible short term memory but I am beginning to be less harsh on myself about things. I know I am doing my absolute best and thats all I can really ask of myself, I am really enjoying being back at work and being around people a lot more even if it has made me a slightly less of a crazy cat person. Luckily I still retain the crazy!

My next goal (other than my ongoing attempt at weight loss and trying to write an album) is to slowly increase my working hours and even do a couple of shifts in charge of the pub as I've mostly just been a general bar-steward thus far (I am probably the biggest bar-steward in the world!) so that will be challenging and something I am looking forward to seeing if I can still do that aspect of my job, fingers crossed I can! Other than that I need to concentrate on being happy and alive, I have recently had a tough patch emotionally and mentally no doubt due to being a bit run down, I need to remember that is normal as a result of the beating my brain has taken and the beating my body still takes ha!

Thats all from me for now.

Merci

Adam x

Treatment

So the big day finally arrived, a day that at one point I seriously doubted would ever happen! Suffice to say for me it was a massive relief and what I feel is (hopefully) the start of the rest of my life.

Like anything momentous in your life it absolutely flew by, I tried to take some notes to remind myself of things for the blog which should hopefully help me with this post!

If you've been an avid reader of my blog (and if you have not, you've missed out on loads of stuff!) you will probably know by now that the 1^st May 2015 was the scheduled date for treatment of my AVM that ruptured in August 2014 and very nearly killed me. I had stereotactic radiosurgery, but I'm getting ahead of myself so lets go back to the day before I went up to Sheffield (I had to go up the night before for pre-op tests etc)

I was understandably a mixture of nervous and excited, I knew the procedure was relatively safe, in fact the most dangerous part was the angiogram I was set to have beforehand! An Angiogram is where a skilled neurosurgeon pops a tube into one of the arteries in your groin, then shoots up contrast dye up it as a CT machine takes photos of your brain (or the area being scanned).What this does is allow the Surgeon to see the blood flow in your brain without opening your skull up. Its mostly painless, a bit strange but it does carry risks (Stroke being the main one)

I of course got very little sleep the night before, that's something fairly regular for me. My Mother used to find me up late at night reading teletext when I was a young un (a text based news on a TV in the UK) as I was such a night owl!

The pre-internet wonder that was teletext!

Nervous? Nah!

I was pretty tired heading up to Sheffield which probably didn't help things, but my fantastic Sister (who I don't thank enough, she's been amazing to me throughout this!) helped settle a lot of my nerves. Continuing my spectacular luck of awful ward mates, I got stuck in a room with what appeared at first a pleasant Scotsman (in for a biopsy) who quickly descended into his own pool of madness that included telling his own life story 4 times over, an irrational hatred of African Footballers and having a full blown conversation with himself into the very early hours of the morning. Coupled with the intense lights in the place (seriously how much money must the NHS spend on lights?) which made me momentarily doubt my aethiesm (it was “heaven” level of brightness) I got very little sleep. I was a bit of a grumpy bear come the morning but excited never the less!

Notes from Day One

• Hospitals sure like to keep you waiting
• Scottish Man hates african footballers
• Scottish Man also really enjoys telling his life story multiple times over
• Scottish Man makes Katie Hopkins seem relatively sane and normal
• Hospital food is still poo
• How much money must they spend keeping the lights on?
• If I was not an Atheist I would believe I was in heaven its that bright!
• Real excited for tomorrow, hope it all goes well!

So after a thoroughly rubbish first night in Sheffield I awoke to what I hope turns out to be a defining day in my existence on this earth!

It was a bloody long day! Hopefully I can remember the order correctly.

I was up at 6am sharp to take some steroids, not to make me look like this

 but to stop extra swelling/inflammation post treatment

Then came probably the most unpleasant part of the day the fitting of my frame. Now I'm no wuss when it comes to pain these days, obviously having experienced (and survived) a rupture I now know what serious pain is like, I live with pain most days since (back and headaches) so its not something I am unaccustomed to but the bloody injections to numb my head for screwing my frame in hurt a lot!

The actual screwing in part isn't too bad to be fair, its more a intense pressure focused on the screw site. Kinda like someone squeezing your head a lot!

As with a lot of this experience thus far, you quickly become accustomed to a new feeling/sensation and it becomes fairly normal. I of course took plenty of pictures because hopefully it will be the only time I will have to wear the thing (more on this later) and it costs £17k! It was literally the most expensive thing I have ever touched! The pleasant chap that fitted it reminded me that, its now much more humane than it used to be. Way back when they first came up with Gamma Knife, originally they actually drilled holes into the skull to stick screws in and then attached the frame, rather than the current process of essentially clamping the frame to your skull! Phew I missed a trick there!

So with my frame attached and my already large heavy head feeling considerably larger and heavier I was sent for my least favourite test an MRI

As I have previously stated I fucking hate MRI scans, they are noisy claustrophobic experiences but I guess as I am beginning to get used to them I was pretty OK this time! Hopefully this will be my last one for a long time!

After my MRI I was then sent for my angiogram which was a lot quicker than my last one and a lot less painful (thankfully). Last time my neurosurgeon really struggled to get the tube into my artery, which resulted in a lot of digging on his part and a lot of pain on my part! Thankfully this time it was much easier and quicker and was all done in about 30 minutes or so :) then comes the most boring part post angiogram. You are not allowed to move for 4 hours whilst the artery seals up (obviously not wanting to bleed out!) and are confined to a bed until this happens! This time around I was much more prepared and brought plenty of reading material to keep myself occupied!

With all that done there was only one thing left, treatment!

After everything the treatment was strangely quite peaceful and pleasant and you do not really feel a thing (other than a strange warmth) this was helped a lot by them having an iPod dock which enabled me to listen to my music of choice during the procedure (Mogwai & Modest Mouse if you are wondering music fans!) which was bloody cool!

As I already have my frame attached you then get what I can only assume is an additional connecting piece attached on top (at this point you look like some ridiculous Dr Who villain) that then locks in to the connecting piece in the gamma knife machine. This is so you do not move a muscle during the procedure and also so that they correctly target the right area of the brain! When you are all locked in movement is impossible which is a little uncomfortable but having my own music helped me relax!

The whole treatment lasted 90 minutes or so, and then finally after having my frame on for most of the day they could take the bloody thing off! The relief was immense, as I said previously it was not intensely painful but the constant pressure and squeeze on the head was unpleasant!

So after that they dabbed my pin sights with gauze, gave me some more steroids and then sent me on my way to the ward to get some much needed rest and food!

Immediately there's no noticeable effect other than the targeted area feeling warm and sore (and the pin sights hurting like hell) which is all normal.

I then slept a good 6 hours before getting released bright and early the next day, I purchased some essentials (bacon, eggs, good Sheffield beer, doughnuts!) and headed home with my sister in her motor vehicle!

Post sleep pillow blood, yummy!

As I write this 5 days later I'm still pretty sore and tired but hopefully that should pass sometime this week, I probably overdid it yesterday which led to a lot of headaches

, pain and wobbliness on my feet so I'm taking it much easier for the rest of the week.

I also thought I was one of the lucky ones and had avoided my major side effect (visual loss) but unfortunately when I awoke yesterday my peripheral vision on my right eye had indeed got worse/gone but they say it should only be temporary!

How I currently feel!

Other than that I cannot complain, I definitely feel one of the lucky ones throughout this whole experience, I have got off relatively lightly all things considered so I should be grateful about that. I have also learnt a lot about myself and others so that's been good!

Its by far not the end of my story. Unfortunately (and I would not hold it against anyone) a lot of people seem to think I am now fixed. I am not. I will find out in about 18 months or so if the treatment has worked (fingers crossed it has) but the damage my rupture caused is not fixed by my gamma knife treatment, only time can hopefully heal that. There's every chance that a lot of my current deficits will improve, but similarly there's also every chance that this is as good as it gets. Unfortunately with the damage my rupture caused there's no instant cure for healing an injured brain, only time. I have every hope that I will continue on an upward curve, my recovery has been pretty impressive thus far I feel, but I also realise at the same time that I may or may not improve further.

Obviously I will try hard to keep improving, but if not c'est la vie. I am alive, relatively well and much improved from what I was, mentally,physically, emotionally as a person. I am beginning to like Me 2.0 I think.

The next big landmark other than my impending return to work is the 1 year post rupture mark, I am really looking forward to that one! Why? That's because my chances of a re-bleed start to drop down a lot, which should hopefully lessen the lingering bits of anxiety surrounding me, that loaded gun backs away a little bit!

Finally I would like to offer a personal heartfelt thanks to every nurse,doctor, surgeon,consultant that has got me this far. The NHS really is the most wonderful thing in the world, and I would be dead without it!

Also a massive thank you and love to those who have been with me every step of the way in particular my amazing sister Kellie, my Ma & Pa (Lars), my BFAM (brother from another mother) Benjamin and all the other wonderful friends that have enabled me to get this far. I will never be able to express my gratitude enough but you are all bloody amazing!

Right enough of my pseudo Oscars acceptance speech, I need a coffee and to relax. Speak soon

Adam

Science Bitch

So I recently had two very good interlinked pieces of news, one a few days ago and one today! I guess I was kinda letting the first one sink in a bit before blogging about it, savouring it like a tasty beverage! But after todays other good piece of news I have decided to blog vomit it all up in one tasty morsel!

So

In the words of my 2^nd favourite Professor (After Brian Cox)

I am set to have my Gamma Knife treatment on the 1^st May 2015! I have struggled to describe my happiness and excitement to people but the best I have come up with to date is “Every Christmas ever all at once”

Its obviously no immediate fix but its the first step in a path to getting my life back finally! I will have to wait 2 years before I will know for sure if its eliminated the evil little swine, but its a step in the right direction. I will have to go up the night before for some pre-op assessment (checking out how Sexy I am I guess?) and then on the day comes the riskiest part of the procedure, another Angiogram. Before checking out the next day post procedure. The procedure itself is pretty quick and relatively painless other than the metal brace that will be screwed into my noggin (I get to temporarily become a rubbish Iron Man) and will probably take up a fair part of my day!

There is a very small risk of having a stroke (no not that stroke you dirty minded fools!) whilst having an angiogram, but I feel confident having already survived one that I can definitely get through number 2! I know I may be risking my luck by typing that, but I don't believe in luck, I believe in Science.

The only other side effect I should expect (other than feeling a bit knocked about for a while) is that because my AVM is located in my Occipital lobe there is a decent chance that my peripheral vision on my right eye may get worse. It has improved considerably from the dark days but its still not normal, but as far as trade offs go its two things I am happy to risk in getting the ticking time bomb out of my head (literally that!)

I am expecting to rest for a couple of weeks and then get back on with things which brings me on to good news No.2

I had another work meeting this morning! Truth be told I was absolutely dreading it, knowing that one of the outcomes could have possibly been a dismissal on medical grounds which would have been pretty devastating for me but totally understandable on works front (they have a business to run)

Delighted to say nothing of the like happened! They are pleased with my progress (my big boss even noted how well I looked in comparison to the previous meeting) and are happy with the plan of going back to light duties ( a couple of little shifts a week at first) around 2 weeks post gamma knife! With the idea of eventually building back up to my normal 45 hour a week workload. Suffice to say I was delighted with the outcome of the meeting.

Don't get me wrong I am a little fearful about going back, it was where my bleed occurred, and I am unsure if I will be able to do the job to a decent standard, but its a personal challenge now to at the very least give it a try! I feel fairly confident that I have not forgotten my skills and that I will physically be able to cope with the work. I know for sure that I am emotionally 100% stronger than I was pre-bleed because after all this how could I not be? I have gone through a veritable hell to get here, and I have no intention of doing nothing other than keep progressing forward. Sure its gonna be a big challenge, probably just as tough as my rehab process has been. But unlike that I am prepared for what is to come, and if I show the same spirit, mental toughness and endeavour that I have up to this point I should get through it. Once you have survived a close brush with death everything else is not as scary as it once was or should be! I know I am a survivor, a warrior and dare I say it pretty fucking bad ass! So hopefully its gonna be another challenge that I will pass :)

Out of the Woods (or how far i have come)

So I have been a bit quiet on the blogging front, I guess mainly because I have had little change or news. I'm still awaiting my Gamma Knife treatment which should be happening anytime soon, and I guess if i'm honest with myself the wait is starting to get to me.

Maybe its the lack of sleep as of late, maybe its some recent news that I will not discuss here which threw up some old emotions that I had thought I had previously dealed with, maybe its because some pains never really go they just simmer under the surface waiting to come to the fore but today for the first time in a while I had a real good cry. It was as ever to music which I find is one of the few trigger points still for me, I had a real good sob and then sat reflected and felt suitably inspired to write. So in a sense its a good thing, It already feels pretty cathartic just typing how I feel out.

There's only so long you can be strong for you see, only so many times you can tell people and yourself that you are “Ok” with what has happened and what you have subsequently lost is something that you are dealing with fine. Most days I am ok with it, I guess today is not one ot those days.

Don't be confused this post is no cry for help, as I type I can feel the negative sad emotions begin to slowly melt away. This is a reminder to myself that I have come so far already and even though I have still some way to go till the finishing line, its beginning to come into sight so now is no time to get down in the dumps about things.

So much like my favourite Tv doctor House MD today

I have done some really cool things recently as well so I gotta be pleased about that, I got my first tattoo which I fully intend to get finished when I eventually get the all clear in a few years

For those not in the know my tattoo is some album art by probably my favourite band Modest Mouse. The anchor is to me symbolic of the bad times and the balloon is the hope for the good times still to come and the piece as a whole is a reminder to not allow myself to be dragged by whats happened. 

I continue to play and make as much music as possible something that as recent as December I could not do, which I am pleased with, I have challenged myself to write a whole album before the years out. Here is some definitive proof of this:

And if that is not enough of an indicator that I am getting better, this certainly is. Its part of the forgotten hospital experience, a note I wrote my best friend Benjamin when my speech went in Nottingham I think, I say I think I have no memory of this!

If you cant make it out it says "Just checking that I can still read and write normally, Ben Broughton is a knob! Don't understand why i can't verbally communicate properly! My brain has clearly gone a bit wrong! Apologies Kids!"

I can now most days verbally communicate fine, it still gets a bit broken down when i get tired or stressed but its a massive improvement from what it was!

So as a reminder to myself and my big beautiful broken brain, we got this fool! Sure there's still plenty more of ups and downs to come, challenges to face, hills to climb. However we have come so far in such a short time, so be happy, we're alive, relatively well and the future is fairly bright. Now if Sheffield can send me my appointment anytime now and Manchester United finish in the top 4, this year will get much much better!

Thanks as ever.

Adam.

Meet Dave (My trip to Sheffield)

Sheffield is a wonderful place known for wonderful beer, a vibrant music scene (Arctic Monkeys guys!) and mainly Yorkshire men! Its also home to the UK's specialist hospital for Gamma Knife

Meet Dave (My trip to Sheffield)

Today I took a rather large step towards getting my AVM (Dave) dealt with as I had my consultation with the lovely staff at the Royal Hallamshire Hospital in Sheffield which is the specialist hospital in the UK for Stereotactic Radiosurgery or Gamma Knife as its also called.

Gamma Knife is essentially targeted radiation to shrink the AVM into something resembling scar tissue over a couple of years, which if sucessful should stop my pesky AVM from bleeding again.

From the website they have it described as:

“The Gamma-Knife is not a knife in the conventional sense, but uses a focused array of intersecting beams of gamma radiation to treat lesions within the brain.  The technique was invented by a Swedishneurosurgeon, Professor Lars Leksell and provides an alternative method of treatment for a number of conditions, for which open neurosurgery may be either not practicable or carry a high risk of complications.

Within the central body of the Gamma Knife there is an array of  separate cobalt sources (201 in the 4C model) (192 in the Perfexion Model) and each of these produces a fine beam of gamma radiation.  The sources are evenly distributed over the surface of the hemispherical source core so that each beam is directed at a common focal spot at the centre.  The resultant intensity of radiation at the focus is extremely high whilst the intensity only a short distance from the focus is very low.  This enables a high dose of radiation to be delivered to the abnormal tissues whilst sparing  the adjacent healthy brain tissue.”

The machine looks something like this 

As well as seeing the hospital I also got to meet my consultant Mr Yianni who seemed a thoroughly pleasant chap and very helpful in answering my questions and queries which turned out to be few due to the extensive research I have carried out around the subject (thankyou Internet!)

The treatment which should hopefully occur within a month (finally!) seems fairly painless with the exception of the metal frame that will be screwed into my head which will look a little bit like this

Mr Yianni also answered some questions on the size and location of my AVM which I had previously had been a little bit in the dark about! Turns out as I thought its located in my Occipital lobe (but had also affected my other brain areas due to the size of my bleed) and is around 3cm or so in size, which is good in the sense that the larger it is the worse it is. I also got to see the images from my angiogram that had taken place in December, which I had seen in real time whilst the procedure was under way (seeing the inside of your brain in real time is WEIRD!) but had not the chance since!

To explain the picture a little, the large snake like bit is a “feeding artery” and the large black blob is the Nidus of the AVM, which is basically the nasty tangled bits that cause all the problems!

                     Above is the inside of my bloody brain, or rather an X-ray showing "Dave" in all of his tangled glory, the evil little shitbag.

Gamma knife is the safest way of removing an AVM, but like any procedure involving the big pink mass of flesh it involves risks which they outlined to me. The benefits obviously massively outweigh the risks, as to leave it untreated would essentially be a case of when it would re-bleed rather than if it would re-bleed

The main risks involve having an angiogram before my gamma knife procedure, which leaves me at risk of a stroke during the angiogram. An angiogram is basically where they insert a tube into my groin (into an artery) and then inject a dye which is then carried into the brain and gives them a much better picture of the blood vessels inside which they see through an X-Ray.

A better explanation is:

“An angiogram or arteriogram is an X-ray test that uses dye to demonstrate the arteries. Arteries are invisible to X-ray so the only way they can be seen is by filling them with dye. The correct name for the dye is 'contrast', and it is the iodine it contains that is visible on X-ray.”

Its a little uncomfortable, but no biggie! There is some strange sensations as the dye gets injected (like a reverse shot) as the warmth spreads through the blood vessels, which is a little strange but not too bad. The worst part is afterwards as you have to stay still for 4 hours whilst the wound closes up.

The other risk is that the gamma knife could cause further damage to my occipital lobe, which as I discovered today is still far from recovered. I had thought my peripheral vision was pretty well recovered, or maybe I had just got used to it being poor, but as I discovered when they did a visual field test its still pretty bad. The Consultant could not put an exact percentage chance of It getting worse, but said it was fairly likely but that it should also return to normal (Well my new “normal”) after a couple of months, which I am pretty cool with. Risks and benefits and all that, its worth being a little bit blind in my peripheral vision if it means the horrible little bastard gets obliterated!

I have also chosen to now call my AVM Dave in “honour” of our current incumbent Prime Minister David Cameron (Prime Minister is a nice way of saying Grand Shitbag) as its much like the current PM in that I really wanna see it gone ASAP, but unlike Big Dave I will have to wait a little longer to see it go.

They estimate around 2 years or so before its properly gone, which they will confirm through a further Angiogram, which whilst annoying in the respect that it will still be hanging over me a little bit, its the safest option!

Even with that in mind, I am really really really really really looking forward to getting my life back in my own hands. The consultant reckons if it all goes well I can return back to work around 2 weeks or so post gamma which is nice, as much as it sometimes drove me up the wall I really enjoy working there. And it will bring back routine, human contact and further cognitive challenges that my life has severely lacked since this all happened.

I would be lying if I said I was not a little fearful at going back, as its the scene of the crime in the sense of that it is where my bleed occurred.

BUT and its a big BUT

As I have learnt on this journey, fears are there to be confronted and to challenge you and mainly to be overcame. Its something I look forward with relish to taking on :)

Thats about all for now, i'm gonna have me a beer!

We are strangers to ourselves

Today's exciting instalment is a sorta sad one (to an extent) but I feel honesty is something I certainly must bring in documenting my journey.

It is a journey that has been full of ups and downs, which has honestly been the biggest struggle in my life, but as I approach my Consultation at Sheffield Hallam hospital (Wednesday 25th) about my Stereotactic Surgery, I think its a good time to remind myself how far I have come mentally, or not in some cases.

I have never dealt with change very well in life, its one of my many personality faults/traits, which has progressed deep into my adult life.

The Oxford dictionary defines change as:

“Make or become different”

Which is certainly something that I can relate to in my journey with my brain injury.

The earliest memory I can currently recall of change is a rather silly one. I had a pair of favourite trainers as a young lad (Pink, yes Pink!!) ones that I was convinced helped me run faster, they were just cheap ones from Shoezone in Tamworth (a long gone budget shop) with nothing particularly special about them. But I bloody loved those trainers, I played out in them everyday, whether football (in a car park, those were the days!) or just Accy 1-2-3 (a council estate version of hide and seek) or riding my bike down ridiculously steep hills I used them faithful pink/purple trainers. I can distinctly remember being devastated when they had to be thrown out due to being totally wrecked by too much wear! More so when me and my Ma went back to the shop to find they no longer stocked the mythical trainers, how the hell was I gonna run fast anymore?!

That is my earliest memory I can recall at this point of change, but why bring up this non interesting tale of change you ask? (or not ask)

Because if there is one thing this journey has been about thus far it is change.

Remember change is to “Make or become different” and this continues even now, and will until the end of my days on this spinning rock in the cosmos I assume. I know that further change is ahead of me in the next year or so and I immediately was/am terrified of the prospect, but why?

I am a man of habit, as proved by my many years of relentless smoking/partying and general disregard for my own health (luckily something I have changed in the past couple of years or so)
                                      

Pictured above is me in my cooler more care free days! Ironically i have changed a lot since then!

I abhor change, I really bloody do. I like order and habit. It brings a solid base to my life that I have never quite been able to replicate in any other way. It brings comfort, peace and ease to my mind. I know big change is a coming to my life soon and still my first immediate reaction was to fear it straight away, rather than embrace it, but in a sense the human body is constantly changing mostly without your own knowledge. Writing this blog reminded me of this interesting fact on the human skin.

“Throughout your life, your skin will change constantly, for better or worse. In fact, your skin will regenerate itself approximately every 27 days “

So in a sense the outer external husk of a human body is regenerated or changed every 27 days. So I have been living with change my whole life without ever really noticing it. But internally, or rather emotionally, its not every 27 days that you get a new you!

There are these pesky things called memories, which as humans we attach importance and emotion to, even to the point of thinking that there is not a chance of making new memories to replace these old ones.

Yes, you read that correctly, your brain actually replaces memories http://www.thedailybeast.com/articles/2015/03/21/how-your-brain-deletes-trauma.html

“The process of recall causes people to lose other memories, meaning that our attempts to remember certain things lead to the forgetting of others.”

So I guess Homer was right all along 

Which means my avoidance of change is a silly thing really, change is as inevitable as death, taxes and my love of Paul Scholes.

Pictured above is probably the best footballer of his generation Paul Scholes

Why fight change? why fight against the current of the sea of change? I have no bloody clue why I do, but I do know that slowly but surely I am beginning to get better at not fighting it and embracing what happens and trying to make the best of a bad hand.

At probably my lowest point in my diary (Wednesday 22nd October 2014) I wrote:

“I hope one day I will recover from this, but I can't see it happening. I have lost hope. I have spent so much of my life fighting/struggling that I don't know if I have any fight left in me. I feel broken!”

I still feel a bit broken to this day which is natural as my brain is still a long way from being fixed, but I have changed considerably since that day. I have got stronger, emotionally and mentally. I have so much more fight and fire in my belly (and its a big bloody belly!) that its hard to see the person who wrote that anymore.

And that is the positive thing of my old friend change, which is to “Make or become different” there is always the possibility that change can be a good thing, so I guess I better start embracing it!