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