Life with Brian a True Life Story

Posted: July 30, 2015 in How it Started
Tags: , , , ,

The start of a tumourous story

A saying I heard once “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.” made me ponder why we bother with the rat race in the pursuit of success forsaking the small things taken for granted.  This came clear in June 2013 when my life changed for ever.

In previous years I thought I had all the bad luck in the world with every corner turned a brick wall appeared to struggle over or take an alternative route.  Unlucky 13 turned out to be more than a superstition in 2013 for me and no doubt many others.

Thursday 11th April 2013 seemed to be a normal day at work with the only exception of finishing work and travelling to parent-in-laws to fix the home computer.  After having something to eat I proceeded to attempt to fix the computer when out of the blue my eyes felt funny as if they were moving to left and head trying to catch up.  Unable to do or saying anything but hearing my father in-law asking what I was looking at was quite scary although it only lasted about a minute, my head had actually turn right level with shoulder and flicking back and forth with no control.  Quite disturbing as at the time it felt like an external force was trying to break my neck.  Not long after this I felt as if I had a headache in the centre of the brain getting stronger and stronger and my eyesight going.  At this point I remember being scared and thinking this is it! Not even a good bye to my wife and kids and what about the baby? And then I became unconscious.

After five minutes it appeared that this was not the case as I came around not knowing who I was, where I was or what happened and wondering why the hell are the ambulance staff picking me up.  Rather then be left on the floor, I was moved to a more comfortable area and laid to rest on the bed while being asked questions and not able to answer them.  One question that stuck in my mind was “what day is it?”, while laughing at the question and thinking how stupid do they think I am the realism suddenly hit that I didn’t have a clue.  This didn’t last too long as my memory returned over the course of a few minutes but it did feel like an eternity.  It was explained that I had a grand mal(or tonic clonic) seizure, this meant nothing to me but thought that’s the last time I go to that chip shop!.

With no history of such events or knowledge of any events in the family I was taken for free bed n breakfast at a very large hotel full of sick people. Being kept in and monitored every two hours throughout the night barely getting any sleep made it feel like it was all a dream. Waking up Saturday morning with my wife at my side made it clear that it wasn’t. It was explained that during the seizure my muscles had locked up and it felt as if every muscle had too long a session at the gym. I had trouble walking but was released after having an EEG booked and advised it could have been caused by a number of things and must be monitored for 24 hours.

Sunday 2nd of June 2013 I took my daughter out for a walk with our camera’s and must have walked about 2 – 3 miles in total through country public pathways. When arriving back home I checked pictures on camera’s and transferred them to computer, all of a sudden I felt the feeling again and I was off for a 5 minute sleep only this time it wasn’t, while my wife was on the phone to the emergency services I started to come around and then slipped back in to another one. The only part of this I remember is being wheeled off to ambulance in a wheel chair and taken to hospital. After being kept in over night I was quickly sent for an MRI scan Monday morning, a few hours after having an MRI scan, a nice young lady drew my curtains looking a little nervous(which isn’t a good thing) and proceeded to tell me that the reason for the seizure was a lesion and started to explain what that was. If you don’t know what that is then it is basically an abnormality on or in the brain, in my case a low grade tumour on the surface of the frontal lobe (no wonder I’ve been a little quackers all my life ;)). Strangely enough this had no effect on me at the time and assuming it is the bodies defences shutting out this news. After being prescribed drugs and a plan on how and when to take them I was released, the medication didn’t seem to work at first as for the following two months I was in and out of hospital with seizures and each time was a precaution in case I had multiple seizures which can damage the brain. The lamotrigine slowly kicked in and seizures were becoming partial/focal but occurred ever two weeks with no warning, no trigger or aura. This was controlled through the use of medication eventually by a Neurologist. A concoction of Lamictal and Keppra was used with a dosage of 300mg per day of the former and 500mg a day of the latter. All of this is the easy part so far which is bad enough and yet the worst is to come. Don’t read the leaflets that comes with these as these scared me to death!!

The realism of it all didn’t seem to kick in until I had a detailed MRI scan at a better equipped hospital with a follow up meeting with a brain surgeon. Nothing can prepare you for the news that the best option is brain surgery, no family, no friends can help and I chose not to speak to other patients as all cases are different. Support groups were offered but never really chased up or encouragement to go to them, at the time I’d rather not talk about and happy to stick head in sand.

After a year of taking tablets and having scans some good news was that it hadn’t changed, so in April 2014 the decision was left with me to have surgery or not. The only responses I ever got from people was that it shouldn’t be there so have surgery, fine for those who don’t have to go through it. As you can see it took a year to get my head around it and go for surgery and I still wasn’t ready. Around June I made the decision to just go for it and roll with what happens afterwards.

It’s not rocket science!!

As previously mentioned I was left with the decision to have surgery or not after driving my wife crazy with my indecision I woke up one morning and said what the hell, advise them I want to go through surgery. Having a meeting with the brain surgeon I chose to have everything explained and nothing held back, which he did.

How you come to the decision is your battle but my thought process was…

  1. If you don’t have surgery, life expectancy could be shorter than having surgery.
  2. If you have surgery they may be able to get all of it and increase your life expectancy.
  3. If you have surgery and they don’t get it all out, life expectancy could be longer than without surgery.
  4. Risks of surgery could end you life during surgery or in recovery.
  5. If you don’t have awake surgery they may be able to get it all out but you could awaken with a disability.
  6. After surgery it could mutate and become cancerous.

No matter how you look at it or morbid this sounds but we all die and some sooner than others, basically I accepted that I am a dead man walking as you rarely (if at all) get cured of a grade 2 tumour as they almost always come back. If I died during surgery I would leave my wife and kids behind but my suffering would be gone and I wouldn’t know. If I came out disabled and depending how serious it was, I would be alive but unhappy about it and dreading the day it comes back. If all went fine but it mutated and became cancer, I will die unless there is a major break through in brain tumour cure.

While I have not looked in to it, I imagine dying from a brain tumour must be horrific as it eats your brain and disables functionality until you are just a shell of your former self. It would be interesting if a family member would explain what they went through in detail. There is a lot of information on the internet but not specifics that I could find that would help me understand.

Before surgery everything was explained but it was still scary (I don’t even like having blood tests so you can imagine how scared I was, I never let this on and even went to work the day before surgery like if it was just a holiday coming)

Back to the brain surgery, do not read further if you do not want to know in detail what it’s like.

Click this link for next blog – surgery.

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