3 Too Many

“When I want your opinion, I’ll remove the duct tape.“ – unknown

Short and sweet today as in hospital tonight and they’re coming to take me away soon. To a CT scan that is! Had a terrible time last night with tremors and the likes so got bugger all sleep anyway and the pain was horrible too. Want going to head into work today as felt so lousy, but decided it was safer to be around others than home alone. So get myself ready and head off to the office. Still getting random jolts and tremors.

Quiet morning really.spent a good amount of time trying to restrain the random tremors and jolts. Head and body aching quite a bit too. Head off home about 1:15 just as it is heading up. Heat to 29 degrees -bloody baking! Very restless and sore and still fighting the tremors so decided to call the Oncologist doctor and they recommend that I come into hospital.

Get checked in through A&E – use the green card to get express entry. Have numerous people question and prod me.one of the Chemo docs then comes up with the idea that I may be having a reaction to one of the anti nausea pills I’m on. Bloody he’ll. Just shows you’ve got to check out everything that they give you. Well this is what they believe it is. I was worried it was tumor related. Still they are doing a CT scan as a precaution. Fingers and toes crossed folks that it comes back clean.

They’ve also given me another new drug to try to counter the body pains, and it is meant to put you to sleep. Guess what, has worked on me – yet! Having a great laugh with the nurses about not being normal if it’s odd or different then I’ll have it or do it! Scan done-they’re is still a brain, thank goodness.won’t know more until the morning.

So that’s it so far folks. In hospital and having a different M&D time tonight. Take care and hope you have a brilliant weekend all.

Kia Kaha

“Everybody wants to go to heaven; but nobody wants to die.” – Albert King

“I always try to cheer myself up by singing when I get sad. Most of the time, it turns out that my voice is worse than my problems.” – unknown

Bugger all broken sleep, hurting more too than yesterday, so decide to stay home to rest and try to get myself right.  OK to clarify this – not in a good way yesterday, heading downhill health wise, take a half a sleeping pill 30 mins before bed, thinking that I’ll get a good sleep in and wake feeling better.  Finally got to sleep about 1:30am.  Wake many times in pain – guess the sleeping tabs don’t block the pain when you’re sleeping.  Awoke about 7am feeling no better.  Take all the meds I can and wait out about 30mins or so, and no change in pain levels (about a 4-5 with the peaks at times hitting about 6-7).  Make the call to stay home and flag work, as can’t concentrate either.  Making a cup of tea takes an exhausting amount or energy to do and is so painful as every joint is aching – especially my finger joints.  Family all head off in their respective directions to work and school.  I get through the shower hoping that the hot water will sooth the joints enough to allow me to move properly.  I am bloody sure though that I won’t be heading into the hospital as that place is for sick people and I’m not sick!

Slow day moping around the house trying to find a comfortable place to sit or lay down.  Can’t even stand watching TV as it is to noisy and boring.  Sue gets home about 2pm and Nutty comes over to have a coffee and a catch up.  Jacob then gets home, and the smiley Lachie finally turns up too.  The peace and quiet is broken – ahh – wouldn’t trade them for the world.  More drugs fixes all – well I hope it does.  Feeling lousy and sore still.

Quiet evening, doing little, and trying to get comfortable.  Stare at the TV then M&D time – full sleeping pill this time and a wish for some sleep and the pain to ease.  Sorry if yesterdays ramble didn’t make sense or veered off topic several times – that’s what drugs do to you  Short and sweet today as can’t concentrate enough to make a lot of sense and don’t want to let some of the stuff in my head out as it would scare you.  Take care all.

Kia Kaha.

“This is a new day, one that I have never lived before. I stay in the now and enjoy each and every moment.” – Unknown

Eventually got to sleep about 1:30 as brain processing to much stuff.  And this when I just wanted to rest as I feel like I’ve had a whack on the back of my head/neck with a piece of 4×2.   I’m just feeling swamped emotionally and need time alone to get myself into a position and place to be able to talk about and describe how I really am feeling.  I think that it is also spurned from hearing of Emily’s and Mike’s passing yesterday.  It has shown me the fragility of life once again and made me realise that I have been allowed the time to say goodbye and need to make the most of the extra time I have been given through the chemo and radiation treatment.  The treatments I get are only for one purpose – to give an exctension to life, while trying to balance it out with quality.  Though today feels like a massive battle as head is foggy and hurting and simply put – I’m just not in a good place or feeling good.  More on this soon.  Get up, dose up and get ready for work.  My bloody head – ggrr – I really hate it on days like today.

Head off to work via Lachie’s school.  I can’t remember Jacob leaving for school today or saying bye to him, but that is what life is starting to get like for me – the memory is fading off that fast at times.  Have trouble even remembering what day it is.  This all makes me sad   I had such a great memory and would recite all sorts of random crap, now just a forgetful blob.  Have slow meander into the office and that sort of sums up how time is going today – ssslloowwwlllyyy.  Try to keep on top of my meds, and thank goodness for the iPhone app – as I could not tell you with certainity today what drugs I’ve taken.  A couple of checks of where the app says I’m at and all good.  Have lunch but continue to fade energy and pain wise.  Starting to get unsteady on my feet too, so instead of walking up the road to meet Sue I jsut stand outside the building.  She collects me and we head for home.  I need to ut my feet up and rest desperately.  Boys get home and are in a rowdy and in Jacobs case argumentive mood.  Hide away in the office while to get some peace.  Sue and the boys head off too see Nat and the boys while I stay and rest.  No improvement still.  It is starting to look like I’m going to have to go get some help from the hospital – bugger it!!

I’m not in a good place mentally at the moment and with my head hurting it doesn’t help either.  I have been trying to think of a good way to describe what it is like been trapped in this body with this decaying brain.  Perhaps that’s not the best way to describe it but it is how i feels to me.  I am in a situation that I hope none of you reading this will ever have to face.  And for me to expect that people could or would really truely understand what it is like would be foolish, as by the same token I have stopped over tyhe past few days and started trying to really see what it is like from different peoples’ perspective on the other side looking in at me.  I am finding it harder to look at myself as an outsider than to accept my fate from the inside. Dieing is easy, and it is hard.  Incredibly hard.  I could sit back and go enough, stop treatment, I’ve had it now, why continue to fight a battle that was lost before I knew I had started it?  But there is that bit inside you that says I’m here for the good time not the long time so I’m going to make sure the good times last as long as I can.  Every party has to end as does every life.  But for people looking at me and not knowing what it is like and just seeing the daily changes and dealing with the mental and emotional aftermath of a bad day, or even sometimes a good day, it is hard cause while I have an ending to this illness, all of you have a beginning from that point on – without me.  I’m not been arogant or big headed here but if you are a regular reader of this blog then that will change or stop, and you will find something else to fill its place.  No more time wasted reading random rambles, rants and the odd cursed word.  Some of you have probably alkready changed your habits since I started it, seen as I’ve stuck around longer than we first thought.  I wish I could give you a timeframe but fortunately for me I don’t know.  And there is some merit and phsycology to not giving a life expectancy.  You see if you’re a determined person like I can be sometimes, and they give you for exampl 6 months to live, you go hell – I better pull finger and check off that my life has had a meaning, then in the post they send you an appointment letter for 9 months time.  You will go firstly – bloody lunies haven’t realised I won’t be here for that, but subconciously you will be saying to yourself, I’m bloody well going to that appointment just to prove them wrong.  And you do.  Never under estiamte the power of the human spirit to beat odds, and the determination of a stubborn man to prove you wrong.  Hope this all makes sense in a round about way.  The only goal I’ve got is to make sure that I’m down in history as the longest surviving person with these types of tumours.  I don’t have to worry about not beating the shortest amount of time as that passed about 2 months ago.  To tackle something like this takes a lot of resolve from within yourself.  You have to dig very deep and take a hard look within your mind and soul to know that you can take on this battle and be prepered to accept all the casulties that will come along with it.   I know I’v said before to take the time to put yourself into my shos, but in reality, I doubt you would even start to get an idea of what it’s like.

The family get home later on and have dinner, I have a liquid dinner and then have trouble keeping it down :-(.  Load up on more meds and try to put fingers to keyboard and make sense foryou of my waffle in the blog.  Very quiet night doing little except wanting to feel better.  Jeeze I’m a sad sack aren’t I.  BooHoo poor me, I have a headache and feel like crap.  Really need to take some of my own advice and suck it up princess as there is not a lot I can do about it, so I will take more meds, and head to bed with a sleeping tablet to try to help and hopefully wake up feeling better than today.  Sorry for boring you all with this crap but it is just the way it is somedays.  Take care.

Kia Kaha.

 “Endings are not always bad. Most times they’re just beginnings in disguise.” ― Kim Harrison

“Seeing death as the end of life is like seeing the horizon as the end of the ocean.”  ― David Searls

Double quotes today as I feel that they are both appropriate and are relational to how I am feeling and thinking at the moment.  Shitty sleep and very sore today.  Not sure how to rate the pain but its back in my fingers and toes, and every bloody joint really.  Also I can’t forget my head as it is having a rambunctious time too.  Usual – blah, blah – make a cuppa tea, take 9 pills, crawl back into bed and read about how the world has coped while I’ve been asleep.  Then get up feeling ill, get ready to face the day.  And what a brilliant spring day too – sunny, still, warm and just one of those perfect days.  Dad comes over to collect Jacob and I – we’re dropping Jacob at school, and then I’m taking the Typhoon to Ford to get the brakes assessed.

Drop Jacob off then Dad, and hit the road toward work.  Nice to drive again   No swearing or cursing just cruising in music pumping – maybe the weather is helping the mood. And if you have a comment about me driving then take a number 1 or 2 – you choose how many fingers   Cause I’ll do what the hell I want as I have always done.  Drop the car off and walk into work around the corner.  Have a good day in the office.  Cath, Bernard and I head to RE:Start mall at lunch time to stretch our legs and get a bite to eat.  It is absolutely stunning out – almost too hot.  Slower walk back to the office as my head keeps having moments.  I’m fine though as I have 2 guardians watching me – thanks guys.  Head back to Ford about 2:20 to collect the car and head for home.  Get home to find the drive blocked by the drilling rig as they are taking their third lot of core samples now to find out what sort of land we are sitting on.  Quite arvo then just taking it easy as head not brilliant. 

Ready for the deep waffle now?  I have finished the book last night that Scotty gave me – “The Last Lecture” by Randy Pausch.  Ironically the last bit of the book covers what I am dealing with in myself.  I have been thinking about a lot recently, and more overly what is it that I will be leaving as my legacy.  Or more over what are the memories that the boys will have of me?  Thankfully they are of an age where they will have lots of memories of me.  But it is what will those special ones be – that is up to the boys to decide, but I do wonder sometimes if I have made enough effort to be the best Dad I could for them that they will tell their children about how I was, or what we did.  I know I am very demanding of standards and expectations (and have been doing my darnedest to change that), but I’ve only ever wanted them to be gentlemen as it is a quality that seems to be so lacking in a lot of society these days.  Sure have fun, but respect your elders, your peers and guide the youngsters.  Have manners, open doors, be polite, control you’re language (yes even I can do that sometimes).  Show empathy not sympathy unless you really know what something is like (if you don’t know the difference then go find out for yourself – there is a huge difference).  But most of all be you, in your life, be who you want and be happy that you have given that your best effort.  I guess I can almost say that about myself.  I know that on 30 March I about 9:30 at night I stood in the lounge and looked around.  Had I got what I wanted – well almost, did I dive for paper and a pen to write a bucket list – no.  Why not?  What would I write – I had lived my life almost, I say almost, as the best I could.  But what is that one thing that they will always remember me for?  I am going to write them letters, about who they are/were to me.  I’m also going to do some video diaries for them – scary stuff that.  I hate my picture, and talking to videos, plus trying to put myself outside the reason of why I am doing this so to keep my emotions in check.  What to expect when they’re older – in terms of what life will bring them – you know Dad to Son sort of stuff.  What my expectations of them would be if I was there.  All that sort of stuff.  Hard to put in writing really but I think that you get the idea.  Well I hope you do.  The biggest help though will be you folk.  You will be the ones who know the different aspects of me that make me whole.  For I doubt anyway even my parents or Sue has ever seen the complete me, and all that goes with it.  It’s not all bad – but can at times be a hang-on tight Dorothy as Kansas is going bye, bye!

 Have dinner then relax outside for a bit in the warmth of the evening.  Doing a lot of deep thinking at the moment and trying to find answers to things that I doubt I will ever get.  Had a bit of an emotional battering day today as found out that 3 people I know have passed over – 2 of them in the past day.  1 was sudden too, which makes me think in a small way, just how lucky I am that I at least have some chance to say goodbye and leave/share memories with people.  Thanks to those that have let me know whats happened – Wendy, Dave, Nutty.  So please take a small moment at some time today/tonight to pause and think about those you have lost and all those whom have just passed over, in that they find their peace and way where ever they are.  Take care.  And take time with loved ones, as you just never know.  Today has rocked my world because of the wrong reasons unfortunately.  Lets hope tomorrow is better.

Kia Kaha. 

Jacob swinging over the Heathcote River, Ashgrove Tce, 27 October 2012.

Lachlan swinging over the Heathcote River, Ashgrove Tce, 27 October 2012.

“When you’re happy, you enjoy the music. But, when you’re sad, you understand the lyrics.” – Frank Ocean

Sore   not a nice way to start the day.  Broken sleep too so not feeling the best, and nausea has come back for a visit too.  Still it is 5:55am and I could take meds then go back to bed, but decide to take meds and hit the weights and spin bike.  If I’m already hurting then what’s a little more really.   Have a good 45 mins working out and get a good sweat up.  Feeling a lot better for it both in body and in mind.  Get ready for the day and manage to slice my head in 2 places shaving it.  Yes head – not face as I shave my hair off completely now as I have lost patches of it too radiation and chemo.  Here I was a smart bum a few months ago when I started loosing it saying that I would save on blades, well in fact it is the opposite as now I have 2 razors – one for my face and one for my head so even more cost not savings – bugger.  Have a liquid brekkie as not wanting to eat really.  Have a terrible taste in my mouth today – not sure how to describe it but think of chewing on tin foil then putting a 9 volt battery on your tongue – that horrible metallic taste.

I think that while having my 45mins with myself in the gym this morning I realise why I’ve been emotionally flipping – it is getting to the busy end of the year – Xmas, etc.  Meaningful time with friends and family.  And well, in what could be called a big year so far, it has a lot of bearing, and weight on my subconscious.  Probably understandable I think.  In the back of my mind (well somewhere in the grey matter that has some space left in it), is this my last Christmas?  No one can tell me that, then again anything could take anyone of us before then.  I guess I have to keep it in perspective some how.  I also keep thinking back to when I was in hospital after they drilled a hole in my head and did the biopsy, it was the Sunday morning, and my tummy voice was telling me all night that it was not going to be good news when I get the results.  You know what I mean – you just know that the bad news is coming.  I stayed awake all Saturday night (probably due to the steroids), but remember watching the dawn breaking and seeing the last star fade from light, knowing that one day too soon that starlight fading would be me.  It was quite strange and poignant really – and I have now shared it with you all.  So if you ever get to see the last star in the sky in the morning, the one that hangs there that little bit longer after the sun has lit the sky just – then think of me.  Cause like that last stubborn star, I too am going to hang on shining as long as possible until you can’t see me anymore.  But fear not cause like the star that is still there, just you can’t see it because of the brilliance of the sun, but sure as the sunsets so does that star stay bright.  I will always be here too – just not always for you to see or hear but I am always going to be with everyone of you that I have interacted with.  So there you have it – a real deep spill that I haven’t done for a while.  Hope you don’t mind.

Head to work and have an OK day.  All my happy work colleauges are there so nice to see their happy smiling faces.  Manage to eat lunch too, so not all bad.  Then head off for home about 1:15pm, feeling worn out from doing nothing.  Bloody fatigue!  Have a lay down when I get home and fall asleep for about an hour.  Wake feeling better but overheating as fell asleep in the sun.  Boys are home and having a kick around.  I try to get get back on to doing some work but my head isn’t into it.

Lachie cooks dinner on the BBQ.  Only manage to eat a wee bit as the taste is back and sorry Lachie – it’s not the cooking – but the food is just terrible.  Honestly the food was cooked well as Sue, Lachie and Jacob ate theirs no problem.  Clean up and do the dishes then sit down to do the blog.  Take the car to the petrol station to top it up and take Bessie for a run around the block.  Keep myself busy doing some config work on the home network to make it faster.  Soon enough it will be M&D time and bed.  No Kava tonight, maybe tomorrow.  I had some last night and yep – still smells like dirty socks and tastes like them too.  Though I have found a recipe for Cinnamon and Honey Kava so may try that next.  I did seem to relax me though as I nearly dozed off in the bath last night.  Trust all have had a good Monday and are relaxing now  – unless you’re one of the overseas visitors that will still be getting ready to get through your Monday.  Take care, be good.

Kia Kaha.

“The brick walls are there for a reason. They’re not there to keep us out. The brick walls are there to give us a chance to show how badly we want something.” – Randy Pausch

The best start to the day in weeks.  Yes broken and restless sleep, but woke feeling alive and having the least pain I have had in about 2 weeks.  Almost convinced that this walking and doing a lot of exercise thing may be helping in that it is getting the fluids in my body and joints in particular moving and therefore they are not seizing up.  Not sure if that is true but I’ll run with it now, and give it a bit more of a test run and take a few more notes about how I am.  Fell asleep reading last night and woke up crying – not good having tears on your tablet!  Don’t ask me why, or what was going through my head but obviously something had triggered them.  Either that or it was due to the most incredibly hot Thai that I had for dinner.  I forgot to mention about the Shrimp Woonsen I had for tea.  I asked for it to be a little bit spicy but not to strong, well it got lost in translation I guess.  G-man do you remember the Chickpea Chicken Chilli that we made that time in Wychbury Street and it stripped skin off your lips it was that hot?  Well this dish last night made that taste like a sweet.  I have poor taste at the moment but this lit me on fire!!  It was even hot to just breath in after eating some.  I must have adjusted to it though as I ate about two thirds of it!  My eyes were running, nose was running, I was glowing red, and cooling it with bourbons quicker than they could deliver them – well almost.  Maybe this also helped the body aches by keeping me warm all night, but also caused the restless night – though I can’t remember waking because of what I’d eaten.  More likely the steroids, as I have had them the past 2 days to knock back the head pains before they knock me down to far.  Now to spend the next week weaning off them – crazy 2 days of pills takes a week to come off – ggrrr!!  If I just stop them then the side effects can be worse than the cause.  Anyway I call last nights sleep a victory because of how I’m feeling.

Get up and make a cuppa tea, take meds and head back to bed to read for a bit, this time without crying.  Silly really, a grown man crying so much, but you know – I really don’t give a crap who knows or what they think, I have a wee bit on my plate to deal with and if I want to let it out and let you know cause I know that you will understand and not give me crap about it.  Well not too much anyway, else I’ll poke you in the eye and make you cry too   Just teasing!  I sort out my next drug schedule on the MediMate app on the iPhone, and notice a couple off bugs so email the developer about them.  Bugger me if I don’t get a reply within 5 minutes, with in 3 hours I have another email saying that he resolved them and will be releasing an update over night.  Now that is service!!! If you take or know someone that has to take a lot of different medications at different times, days, etc and they have an iPhone or iPad then I can definitely recommend this app.  And thank you for recommending it to me   It has been a great help. 

Get up and get on with the day then as we are heading to the Booths for brunch and a catch up about their Aussie holiday.  Pick up Jacob from Tom’s place along the way.  If you have the Canterbury vs Auckland NPC final recorded or see a replay, then Jacob is on the TV at about the first half 34min mark.  Lachie just scooters over as he is around the corner from them.  Have  waffles, pancakes, bacon and eggs for brunch – very yummy, and hits the spot perfectly.  As you may have gathered the nausea has minimised to almost nothing.  This could be due to the steroids building up my appetite again – look out pantry!!  I really do struggle with the not wanting to take steroids, because of the crap side effects – over eating, squirrel face, sleeplessness, with the benefits I do get from them – appetite, less head pain, better mood.  Going to try some Kava tonight to see how that works – watch this space.

Get home and mow the lawn, waterblast the driveway, help Jacob clean the fish tank, and clean out the blocked window washer jets on the car.  So just a quiet arvo ; -)  Then have a kick round with the boys.  Have dinner then Joh calls and have a chat for a bit.  Nice to talk Joh.  Have a quiet evening doing the blog and watching TV – well staring at it aimlessly as there is nothing on.  Trust all have had a good day and not to busier time.  M&D time and early to bed I think as starting to fade and want to be able to read some more tonight as I’ve so very nearly finished my book that Scotty gave me.  Nearly – 20 pages to go I think.  All in all it has been a good day on many fronts and health is in a reasonable state.  So we will wait until tomorrow morning to see what Monday brings.  Take care, be bad, don’t get caught.  Till tomorrow.

Kia Kaha.

“I don’t think of all the misery but of the beauty that still remains.” – Anne Frank

If the price of sleep is pain then I’ve paid it. I managed to sleep for 7 1/2 hours straight last night! Not completely unbroken sleep but only recall waking up about five times. Bad dreams though, as woke up feeling as if I had died. Not nice but uncannily peaceful. The foggy feeling in the head has given way and are now in a better place mentally, well for now at least. Get up and then realize that the body pain is back worst than before – shit! Head downstairs to get meds and a drink while the rest off the house are sleeping. Jacob then comes down to check on me.he is a good lad. He wanted to make sure I was ok,have a cuddle and help me back to bed.spend the next hour waiting for the pain killers to do their thing, while reading emails and news on my tablet. Might have to consider upping the drugs slightly as I have to get on top of this. I have that much pain in my stomach that it is making me feel sick – really sick.  Manage to hold the nausea at bay while starting to go comfortably numb and foggy. So in for a brilliant day – not!  At least the tremors, etc that I have been suffering badly over the past few days have subsided for now.  Fingers crossed they stay that way.

This latest round of Chemo has been different more than any other and has me thinking about how much I am going to be kicked around by the last two rounds of it. It is taking more effort this time to start getting my head into the right space to tackle it. And I am not looking forward to it either. Hopefully once I finish altogether I will bounce back to normal quickly, but then again I’m not sure if I want it to happen quickly, as it will mean that the Chemo levels will have dropped off an it is down to the mofo’s as to how long it they take to reignite and start their handy work on my brain. Hopefully quite a while to come back on and not too swiftly. Also is this torture that I am get more of now, just the bodies way of preparing me for what’s to come? I mean that the umber of good health days are depleting so I have to learn new ways to deal with them, and then how to make the most of the bad health days into a great memorable mentally and emotionally brilliant day. I still have a massive mount of fight in me, I know that for sure. But bringing all 4 parts of me (physical, mental, emotional and spiritual) together is hard work at times. I spend to many hours too shedding tears over things, and this while it helps it also hinders.

Get up and get ready for the day. A boiling hot shower helps hugely. Now just need the weather to play ball and get to the promised 23 today (actually made it to 25). Not looking likely at the moment today as overcast and cool. Nothing planned today yet apart from the boys have got parties to head too mid afternoon. Lachie is sleeping over night at his one and Jacob gets home about 9:30 from his. Weather does play ball and within an hour went from 12 degrees to 20.  Decide to go for  walk to see if that helps the aches – it is crazy but in the past it has.  So head off via the chemist as need to collect a script for good pain killers.  End up out walking for 2 hours including stops and cover 9.6kms all up.  Not a bad effort.  Get home hurting but happy.  Have lunch meds and manage to eat something small for lunch.  Then have some kicks with the boys in the backyard.  Give up after Lachie drills a ball into the back of head.  Not a good feeling.  Start getting the aches and pains again not long after, including the bad stomach pains.  Take it quiet the rest of the arvo.  Boys head off to their respective birthday parties so have a quiet household for several hours anyway.  Head out to the Thai Rendevous with Deb and Glen for a lovely dinner and great company.  Then home to watch the rugby at their house with a couple of drinks, and dessert – Thanks Deb.  A lovely evening all up.  Get home then do the blog and M&D time in bed.  Canterbury win – Yahoo!!!  5 in a row.

Really hope that all have had a brilliant productive and fun relaxing day. I’ve tried my best too. Rest of the evening is quietreading a book in an attempt to get to sleep. In other words an average night trying to get to sleep. Take care, have fun, don’t be good as its boring Till tomorrow – catch ya.

Kia Kaha.

“Three things you should know:

1) There is nothing to hold you back except you.

2) You are limited only by your own imagination.

3) You have to fight through some bad days to earn the best days of your life.” – Unknown

Don’t even ask!  I mean it’s Friday so why would things get any better?  Sleep – about 3 hours very broken and restless.  I am that shattered I can’t even dream or think of anything logical about too write about.  So blah, blah, blah – that is about the logic that I can make of myself.  Hurting everywhere, and I mean everywhere.  Seriously, well for about 30 seconds, think should I stay home, go to work or go to hospital.  Come to the conclusion that staying home alone is not wise, so go for heading to work, that way if I need the hospital I am close by.  Take my morning dose of helpers, and what extras that I can/am allowed too in an attempt to be able to walk and move.  Even take some of the dreaded steroids in an attempt to ease things up, as the hospital told me to try that last time I got like this.  Reluctantly take them, as not sure if the side effects are worth the positives.  All the meds are slow kicking in today.  The brain fog thickens to pea-soup status   Get ready for the day, but moving very slow – not sure if it is just in my head or actually for real.  Dad arrives to take Jacob to school, has a cup of coffee, a chat and they then head off.

Sue, Lachie and I head off not long afterwards.  Weather is a bit fresh today – but have a pleasant slow shuffle to the office.  Shaz is pleased to see me as there was only Martijn and her there, so they thought they were in for a lonely day.  The others all arrive.  In my foggy messed up state (my eyes are that bloodshot that I look like I’ve been on the turps in a smokey room all night), I manage to remember how to do a couple of jobs, so I claim victory over the memory for that.  Try to keep up my med levels, and discover I have left one of the main pain killers at home – bugger it!!  Do my best to cope without it.  Head off just after 1pm and not soon enough for today.  Get home and just really feel out of sorts, and restless.  I bloody hate it when I’m like this.  You know when you’re tired, and not thinking straight and just fidgety but then you’re to sore to be able to move much, and laying down hurts so I stay up shuffling around the house – everyday I’m shuffling – driving Sue mad.   Mind you I think she is already mad as she is making  some dough in the bread maker and instead of tipping a cup of flour in to the bowl on the bench, she tips into the empty bread-maker – no comment!  As I do dumb things too like this, I decide it is better and safer to stay silent.  See I can still make rational decissions on self preservati0n.

Lachie gets home and gets ready for indoor footy.  Sue and him head off, via Dad’s to collect Jacob as well. I stay home to be restless and annoy myself and the cat and dog.  More meds – story of my life.  Heard from the Chemo Doc whom we’ve let know what’s happening with me and have a penciled in plan of attack if I can’t get out of this state I’m in the next day or so.  I am now determined that I will not end up in hospital this weekend, even if it damn near kills me!  There’s plenty of time for hospital beds when I’m really ill.  Until then no.  Sort of get a second wind  – well enough to make me feel slightly less foggy, still hurting though.  Downside of feeling a bit better – suddenly feeling really, really sad and down.  I’m going to blame the steroids.  Hell if they’re acting like this while awake then I’m in for a fun night.  This crap with pain and sleeping has been going on for over a week now.  I am struggling to explain how it feels, what its like, etc.  And I feel I am loosing touch with myself again as I can’t remember things from 30 seconds ago most of the time.  Just when you think that you’ve learnt to ride the waves of this cancer crap along comes the extended version of hell.  I’ve honestly had enough of this, and I give it back now?

Family get home.  Muster up the energy and strenght to go outside to have a kick of the football with the boys.  No matter how I am I will find the strenght for them – time is a precious comodity that I have to invest wisely.  I spend the night then paying for it, and have lost all colour in my face – nice shade of white now.  Even bloodshot eyes have settled back to normal.  Have tea, do blog, suffer more, watch a movie called A Little Bit of Heaven, and suffer a bit more – you know an average Friday night.  The movie is really good and sorry but it is about a woman that gets terminal colon cancer and how she and her family and friends deal with it.  There is a lot of things that I can tick off on what happens and put names to people even.  Watch if you want of if you want a to borrow a copy then give me a shout.  I really hope that all have had a better week than I have and definitely a better day.  Hang in there it ius the weekend now – time to unwind a bit.  M&D time then bed – and I won’t even say sleep.  If anyone is selling some then please contact me as I’m sure we could work out a fair price   Take care, don’t be good, but be careful.

Kia Kaha.

“It’s the possibility that keeps me going, not the guarantee.” – Nicholas Sparks

Well that was crap, not sleep!  Body and head pain is getting out of control almost.  But it is more my body – stomach, back, wrists and fingers than anything – at a level of about 6-7.  Very restless night and had to get up several times to take pain killers and just because standing is the least painful position to be in.  Nothing like passing time at 4am staring out the bathroom window at the hills.  I mean what else would I do otherwise?  Sleep maybe?  That would be nice.  Get up about 7am thinking if it would be more logical to stay in bed or at least at home and try to recover.  I was so convinced last night that I was going to end up in hospital in the middle of the night that before bed I double checked my hospital bag (has essentials in it like clothes, toilet bag, meds in case the hospital don’t have the right ones, phone charger, etc) was ready to go.  Give in to logic and get up.  Take meds, make a cup of tea and get ready for the day.

Sue drops me off at work, and comes in to have a coffee with me seen as she is not starting until 10:30 today.  Awesome morning 22 degrees at 9:30am – so sit outside on the third floor cafe balcony.  Nice way to start the day.  Bloody pain is not joining in with the goodness of the day – it starts coming back.  Sue heads off  and I top up the meds again.  Hard to focus really today as I am now in a real fog.  Brain is fuzzy and hurting.  Last out until 1:45 then get picked up and head home via Jacob and Lachie’s schools.  Not in a good state at all as start feelijng really out of sorts and having tremors and shunts (sudden sharp jolts).  Working hard to control these effects as worried they will give way to a full on siezure.  Manage to keep some control of the limbs but mentally am exhausted and feeling extremely foggy now compared to earlier.  Not feeling tired at all, though I have eyes that are that bloodshot, it looks like I have been on the turps all night. 

I really don’t know what the story is with this pain and the convulsions/shunts/tremors.  They hit me and I struggle to be able to control the limb that is affected – and yes it is usually Wilson.  It is like my brain is misfiring the command for it to do something.  Such as if I want to touch my left hand fingers to my nose, it can take several jolts and a lot of concentration to be able to start the movement then if I haven’t poked myself in the eye several times, I will eventually get the finger to my nose. It is a whole new fight against myself to make things happen.  This is the same as happened last week when I was asleep.  Fortunately it has only lasted about an hour or so this time, then it sort of settles down of its own accord.  But you are then very aware of any little adverse event or feeling in yourself.  Maybe this is how things will happen next?  Maybe no main seizure just an increasing amount of  jolts, tremors, etc.  Yet something else public that I am to now deal with – grrr!! 

Have a quiet afternoon doing very little as it hurts to much to even walk really.  I have a small dinner as just to make sure I am really suffering, along comes my old mate nausea to join the party. Seems he had taken a break and has arrived with a vengance.And I need to preserve my energy and self as we are off to see Lachie sing in the Christchurch Schools choirs performance at CBS Arena tonight.  I know I can do it, and will do so for Lachie.  Jacob manages to doze off before the last song.  It was quite a good performance. 

The choir was great, and I manged to stay awake through it all.  Get home send boys to bed and do blog and M&D time.  Electric blanket on 3 again tonight to toast the aches away.  I really hope all have had a wonderful day and it has all gone smoothly.  Hoki Mai.

Kia Kaha.

“Never take life seriously.  Nobody gets out alive anyway.” – Unknown

Well if you could call it sleep then I’ll claim it.   Spent most of the night in agony every-time I moved.  It hurt everywhere and every time I turned over (which was often as you can’t get comfortable).  It even hurts to grab a sheet to pull it up around you.  Even take the good pain killers did very little to ease things up.  So feeling very tired today and it is only starting.  Get up as it is more comfortable to stand and think about doing some time in the gym or on the spin bike but nearly an hour after taking more meds, the pain is still there so decide not to risk it.  Get ready for the day, and a hot shower helps heaps.  No brekkie though as not in an eating mood.  Dad turns up to drop Jacob at school, and Sue and Lachie head to Lachies Orthodontist appointment.  Me, well I seize the fact that it is a mild morning and walk to the Dentist at Barrington.

Seems a little silly that I should help fund his holiday home anymore when really should I care if my teeth are not clean and in good working order.  Explain what has happened in the past six months since I saw him last and he is even surprised that I have kept the appointment.  Poor bugger was also in a bit of a state of shock when I said about my cancer.  He lost his sense of humour too when taking x-rays and I said if they are part of the public health system as he is zapping my head with some more raditation.  He said that I didn’t have to worry about the radiation as it was lower than what you get exposed to on a flight from ChCh to Akl.   I said really, if I had of been in here 4 months ago then they wouldn’t of needed to use the X-ray machine as I was praticaly a walking x-ray machine.  Anyhow, teeth all good donated to the holiday home and left happy.  Dad picks me up and drops me in to work.

Good day at work.  Nice to see everyone.  Manage to keep pain under control, and even are eating as have very little nausea.  I leave about 2:15pm as I have to meet Lachlan at his school and are walking.  Have a good brisk walk, though not overly comfortable as the pain is starting to fluctuate.  Get to Lachie, and we walk home together.  It is great Father, Son time as we are free to just chat about anything.  The last kilometre is a struggle as I am fighting against pain to just be able to move.  Tell Lachlan how I am and that we can’t stop moving until we get home.  He is great and makes sure I get home  – goes ahead and opens doors for me, etc.  Get home and sit down, but stand up again as I can’t sit down comfortably.  Lachie gets me some water so I can take more pain killers and sits with me to make sure I am not alone and are fine. Sue gets home soon after and helps out too.  I lay down as that is semi bearable and dose off. Sue and Lachlan head off out to collect Jacob from Brad’s house in Prebbleton.  I wake up not long before they get home and feel exhausted, and can only really shuffle around because I am so sore.

Have dinner and more meds – story of my life, is topping up the meds constantly!  Watch some TV and do the blog.  Going to have a hot bath tonight, definitely, as I need to try to ease this pain.  It is a bloody pain – haha, get it pain – this pain.  The worst of it today has been in the head and the stomach/lower back area.  Will discuss this more with the doc when I see her on 5 November.  They finally got my appointment sorted this morning.  It is back to the same day – different time from the original one.  Feeling a lot happier for knowing that is sorted out now.

Hoping you have had a lovely Wednesday and have had not aches or pains spoil it for you.  M&D time soon and I must away now as I can hear a hot bath calling out for me.  Take care – thinking of you all. 

Kia Kaha.