3 Too Many

“Having a brain tumor – It grants us the truth & crystallises the knowledge of what is truly important in life” ― Rachel Grady

I won’t even joke about the lack of sleep I’ve had, as it was actually a disturbing night for me and has left me a little rattled mentally and watching myself physically a lot more.  I will explain.  Didn’t get to bed early as planned as stayed up and configured the new Wireless modem, tightened the security and got all the wireless devices connected to it.  We have 17 devices connecting via WiFi – how many radio waves are flying around this place?  No comments either about them causing cancer   Anyhow back to the hell of what is last nights sleep.  I woke about 12:45 as I was trying to pull the blankets up a bit, but Wilson – yes he has to be the start of this (typical hogging the limelight) – would react as I was telling him too.  In fact my all he would do is a random twitch and jolt.  It was like it was not getting the right messages through from the brain.  Instant thought is OH F*#K!!!  Then it was no I’m just imagining it.  Nope go to turn to sit up and leg does similar and Wilson does eventually do want he is asked to by helping me up.  I’m also sweating like mad too.  That is another thing – I can’t control my body temperature correctly – but that’s a story for another day.  Sit on the side of the bed not knowing what the hell is going on as I feel a bit vague (well vaguer than normal).  Get a drink and decide that it was just a one off.  Back to bed.  Settle down, then awake again at about 1:30 – same thing.  Turn over and try to sleep.  Spent the rest of the night waking myself with about 3-4 hours of random twitching and jolts. 

Give in and get up just after 5am.  Head downstairs and stand in the kitchen watching Wilson and the random left (leg) doing just random movements.  In one way it is funny to watch as your limbs, jerk, jolt and shudder without you being able to control them or axctually tell them to do things you want.  On the reality side of it, it is frightening, as your control of yourself is gone.  I was still able to walk and use Wilson but I had to seriously think about it and concerntrate on making sure the movement was complete – in other words that if I took a step my foot was down solidly before taking the next step.  Took all my morning meds as my body was starting to ache a lot as well, and stood there thinking about what to do.  Do I take a trip to the hospital?  Do I just call and tell them what’s happening?  It is only about 5:45 by now so no one really is going to be around.  Decide to sit tight as feeling more in control standing up and moving around.  Go and check emails – but can’t concentrate enough to really read or understand what is in them so flag that and go get in my gym gear.  May as well do something.  Have a good workout, though it was tricky at times trying to ensure that Wilson was going to pull his fair share of the weights.  Then do a spell on the spin bike as well.  It was actually probably good to do it really as it gave me time to to think about what had happened.  And got me thinking a whole lot deeper too.

From what I understand about how brain tumours (like I have) take you down in the end is a bit different to how other cancers of the body take you down.  With most body cancers the tumours and spread are based around in most cases organs that Doctors can easily monitor and note how the patient is responding and can estimate what will happen next and how long possibly it will be till their fight is lost.  With brain cancer, it is noted that while patients start to wind down a bit, they are still doing normal activities and behaviours and functioning as normal.  Then without warning they usually seizure and go into a coma.  This is because with the brain controlling all functions of the body, it is not always a slow wind down of sorts, more a switch off of motor function, etc.  It is from here that a lot of people do not come back out of the coma – so no goodbyes, last kisses, hugs, talks, etc.  Just managed care as I wind down.  Just because I can’t respond though doesn’t mean that I don’t know you’re there so please still act as normal with me – just you’ll be able to get a word in edgewise   But alas, I am still here, very much un-comatose (unless I drink myself there).  But that is what I was thinking about while I was working out.  Of course it got deeper but we won’t go there.

Got on with and ready to face the day. Nausea level is way down today – yay, something had to go my way after having no sleep and getting rattled.  Had a bagel for brekkie even.  Headed to work via Lachies school.  Nice walk into to the office from Latimer Square, as it is a Nor’Wester today and already nearly 18 degrees.  Steadyu day at work, but spend a lot of time watching what my body is doing.  Restrain Wilson a couple of times as he is trying to be erratic, and the office is not the place for random behaviour – Oh wait yes it is   Have a small lunch, but 2 meals down.  Keep on top of my drugs though today.  Sue collects me about 1:15 and we head home.  Bloody hot – 24 degrees.  Login to work, but are hurting quite a bit so go and have a lay down.  Surprisingly I don’t fall asleep.  Boys get home and get themselves de-schooled and have afternoon tea and do homework.  About 5pm we head off to walk the dog as it is such a lovely evening.  Slow 4km walk as my back and stomach are hurting like hell.  Still grit my teeth and keep going.  Has to be done.  It would hurt if I sit down too so may as well be moving.

Get home and have tea – record – 3 meals, decent amount anyway – in a day.  Melissa and Jake drop by to drop off some baking and have a yarn.  Thank you so much.  Sit down and do the blog, and watch TV.  Tonight will be an early night!!  I am starting to feel absolutely shattered.  Still trying to control the rogue Wilson and random left, and I am hoping that I won’t have to fight them through the night again.  Fingers crossed.  Hope you’ve had a brilliant sunny Wednesday and are looking forward to the downhill run to (if you’re in NZ this is) the long weekend.  Take care, have fun.  Thinking of you all.  W&D time and sleep.

Kia Kaha.