“Don’t be fooled by the calendar. There are only as many days in the year as you make use of.” – Charles Richards

 SUre enough – 2:20am – up and into the Honey Puffs, and Milo and wondering where my watch is, (I have been up 5 times already looking for it, even though I know it is on my dresser and checked that the 5 bloody times, my brain can’t seem to lock it off as a task done so to speak).  Welcome to the steroid night hours – cue music dah, dah, doh, doh.  The brain tells you one thing but it doesn’t close it off if you like on the otherside.  Really a messed up way to be.  Just thought I would explain what it is like dealing with these drugs.  Thankfully my spray balances it out a bit and I can settle and sleep.  So have had a restless sleep again.

Up about 7:45 as another at work to be had.  Feeling very jaded though understandably.  Head downstairs to make a cuppa and login to check emails, etc.  Have some breakfast and get ready to face the day.  Work is good with a couple of jobs to work on.  So head into a busy day.  The boys keep themselves busy too and out of my way which is great.  Need to clear my head for a bit so we head to McDonalds for lunch about 11:45 and walk home again.  Get a call from Nurse Maude after we’re back and they are coming to see me about 3:30 to discuss what happened on Saturday, etc.

Get on with work, and Sue gets home as Nurse Maude arrive.  Have a great meeting with them and go over what happened on Saturday and etc.  Have a new plan we have come up with that could help me out better, so will have more meds to collect again tomorrow from the Chemist, and a routine to setup and maybe look at a practice run.  The only certain thing they seem to have is that another event with the pain could/would happen again yet, as much as they believe that another bigger siezure will also happen.  As with the pattern of life with these bloody Mofo’s there is no set standard of events, or this will happen , then this, then this, sort of order.  It is bloody frustrating and tiring and to be really honest, frightening!!  I know I’ve said it before but I’ll say it again, there is changes everyday, and today I think it is the recovery ability from these turns is todays one.  The Nurses that I have only meet a couple of time have said that I am looking tired and others have also said similar as I am feeling very knackered to be honest.  But, yes it is taking longer to get over these little incidents.

Aubery visits – great to see your always cheerful face Aubery.  We have a good catch up and get Aub to give some advice on the garden setup and come up with a plan for it.  Thanks Aubery for all your expert advice and giving me a list of things that I can get the boys to start working on when they get under my feet. 

Sue gets dinner ready while I finish up fixing a problem that needs to be resolved.  Zoe gives us a quick call – nice to have a chat Zoe.  Sue and I go for a walk around the small block – 2.5kms – tonight as I needed to escape the 4 walls and have a talk about things.  All good and nice to see we are not the only street that is torn to pieces again.  Nice they stopped for Xmas at least.  Try to get the blog done then but keep drifting off – sorry it is so late again folks – got to seriously look at when I write this up better.

Hope that everyone has had a great day and nothing to rough has happened.  If it is your second day back at work then well done as they say that it is in fact the hardest day back as you are still sliding back into work on the first day and processing what you have coming up, but today you actually start the work.  Sorry to bring you down folks   Have an awesome evening/arvo/day – nearly hump day!  Take care (and no more wasp stings Joh – that looked and sounded bloody nasty little Mofo!) – ouch!!!

Kia Kaha.

“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” – Mary Anne Radmacher

Back to the rat race!!!  Crappy sleep – no surprises there.  Thanks not steroids for the nice waking times during what should be my sleep hours.  Bloody hell. Get up and login to work, only to discover that I can’t get into all the system that I need too be able too.  Log a call with the Service Desk and they get into help quickly.  turns out that I have to take the laptop into the office to redock it with the network to make it go.  So plan for that after I’ve know what the day has in store as have a couple of appointments first to deal with.

Get ready for the day and do what work I can still manage.  Not feeling the best today.  Speak to the Nurse Maude District Nurse about the weekends events and she is coming to visit me tomorrow as if I am to go down again and crash out the chances are it will be about day 3 after the main event, and the way I’m feeling today she could be right.  Just really busy and tired.  Jacob plans to go Ice Skating which is great, Lachie is still at Lachie’s and Sue is flatout at work.  So plan to head into work when Jacob goes Ice Skating and Jono will drop me home.

Have a good arvo seeing my colleagues that are still working, and the re-docking of the laptop works perfectly, and I can test evrything – so pleased it has gone so well.  Starting to feel completely exhausted so Jono and I head off about 5pm so nearly a full day first back.  So surprisingly feeling a little on edge about everything.  Hard to explain how you get but it is not pleasant feeling like this and so I have a spray or my magic med.  That does the trick except it makes me feel really dozey, and I have such a busy evening tonight.  I have 2 laptops to configure (upgrade RAM, complete Operating Installs, and software configurations), for private jobs.  The trouble is the bloody RAM is the most awkward positions I have ever had to tackle in my 18 years in  IT!! Still take my time (well that is a first nearly).  And there is 2 of these laptops.  Power them, up and get the OS setups underway, thank goodness for modern speed in computers – as this doesn’t take long at all and it is very self smart (unlike the plonker setting it up that forgets the password for the first one he sets up – doh – manage to get back into it though).  Give up then as still have the blog to do too.

Start the blog and crap out in the first line for about a 30 minute nap.  Then start again, then stopo, then manage to actually start and get it done before I fall apart properly.  I have this promblem now where I will start to wake again from now on as the steroids start their thing and by about 2am I’ll be wide awake, brain racing, but thankfully the appetite is starting to suppress.  Even the spray takes a while to knock me down at night, but helps more with the night terrors/panics, and drowning, breathlessness feeling I have at night when sleeping.  Complete blog and manage to post it first time – tonight!  Still haven’t heard back from the Web Master about their issues.  Hope everyone has had a brilliant day and not been too hot or too cold in this messed up weather we have here at the moment.  Or at least had a good day/arvo/evening.  Keep reading folks, and I hope these issues with the blog get sorted for all of us.  Take care and hang in there, it is easy after a while – take it from me.

Kia Kaha.

 “If the future seems overwhelming, remember that it comes one moment at a time.” – Beth Mende Conny

Very quick update today.  Woke in that much pain that it had me vomitting about 4am.  Took some pain killers and crawled back to bed.  Woke later to more vomitting and head pain sitting at a constant 8-9 with peaks of 10.  Body pain not far behind on pain scale either.  Basically I was vomitting due to the pain.  Sue calls in Nurse Maude to assist as the hospital don’ t want me either.  So if there are bad days on earth then today rates as one of the top bad ones – a whole day with pain at about a 10!!!!

Hope you’ve all had a better one and more enjoyable time.

Kia Kaha.

No Man Is An Island – John Donne

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

I woke up, lifted my arms, I moved my knees, I turned my neck, everything made the same noise; Crrrraaaaaccckkkk!!!  ….I came to a conclusion.  I’m not old I’m crispy!!   Sorry – thought we could start a crappier day on a high note or a bit of a laugh anyway.  Yep, sadly I wish I could say that I’ve had a brilliant sleep and woken feeling like a box of fluffies on top of the world, but the reality is that I have had a horrid sleep, been up since 4:15am and feel worse than I did yesterday in my head especially.  Hence the tone for the day has been set very early.

 

Woken early 1:30-2:30am due to burning up with stomach acid, and trying and taking all I can to get that under control.  Head back to bed then and this is where it gets to be unfair, as I can’t lay down to sleep as body and head pain are too strong, and it hurts a hell of a lot to just sit up on the side of the bed.  So really no escape either way.  Pain killers taking a long time to do their thing too – ggrrrr!!!  Hurting to walk as well and even the usual just standing leaning on the bench isn’t helping.  Maybe I have reached a new level of pain and where I will find myself maybe sitting from now on.  Though I really hope not.  Take a dose of the magic drug and with tiredness and other drugs on board I think I have found a knockout mix.  Next waking time is 6:15 in a hell of a hurry as tum on fire, and feeling like I’m having a heart attack.  Get over the minor panic as I have had these sympthoms previously ( now there’s a surprise) about 3 years ago.  Get up and head downstairs as I won’t be going back to bed for a few hours at the earliest as it takes a while for the meds to deal to this.

 

Consume 15 meds (pain killers and all the others I have to take to start the day anyway), Enos (anti-acid drink), teaspoon of baking soda desolved in warm water, and an anti acid tablet – phew!! So yep manage things well!  Get the paper in (takes me nearly 10 minutes to walk to the end of the drive and back as my body pain is at nearly 9-10 and every step is excuritating to take.  Have a read while waiting on the pains in different parts of me to subside.  Have plenty of time to try to figure out what the bloody hell is happening to me as have already had 2 of my highest strength pain killers in an hour (which I am allowed to safely) and it is not making a dent in the pain really.  I feel out of sorts again, as in the spinning hangover feeling again today, except it is worse.  I’m not going to go to hospital!!  I keep telling myself this and trying to stay positive that I can get through this latest bout and it will pass soon.  But to be bloody ruthlessly honest, it is scary from the inside.

 

Muster up enough strength and energy to get ready for the day.  Jono turns up to drop off a couple of parcels that were delivered at work for me.  We have a cath up for a bit then he heads off to the office.  Keep forgetting that it is a normal working day.  Sue heads off to her Physio appointment for her back.  It is getting better, but very slowly.  I plod on doing circles around the house as best I can sucking up pain.  This is going to be a very, very long day doing this circuit  

 

Nothing to report for the day otherwise, except that I did give in and have a sleep this arvo – only woke after (sorry gross) throwing up in my mouth and choking on it.  Thankfully Jacob heard me and came to my rescue.  All OK.  Feeling crappy still even for the sleep and even more strange in the head (no comments)!  Head off to the Bisley’s for a F&C dinner and a catch up.  A good and fun way to end the week.  Not a late night, walk home again, and settle in to do the blog and watch some TV.  Hope all have had a fun day and not to busy.  Have a great arvo, evening, morning, and take care.

 

Kia Kaha.

“Life is like a ten-speed bicycle. Most of us have gears we never use.” – Charles Schulz

Happy Birthday Scotty – hope you have a brilliant fun filled day!

Easy sum up of today – strange, feeling odd and quiet.  Have a full night sleep – well that is the only ironic normal thing that has happened today, when it has been the most absent thing in life.  Wake about 9am after sleeping solidly.  Though I feel crappy as my head is again giving me grief.  Feeling like I have a terrible hangover (I wish) and I can bearly keep my eyes open as well. 

Stagger downstairs, as bloody in pain everywhere, so it is a literal stagger, and wobble.  Into the drugs box like a robbers dog, and take all and everything that I am allowed too.  Have some breakfast and wait for the drugs to kick in before I can even decide what I am doing today or how I am actually really feeling.  The current state of play is aching/thumping  head, feeling sick, feeling wobbly, and not right.  Minor tremors going on too and it really feels like I am about to have a big siezure – which is frightening and has me nervous.  Make an appointment with the Doctor as need to see her about my pain meds and getting them right.

Get into some work gear as intending to do some little chores to make the day go past quickly.  I manage to last about 30 minutes outside before starting to head downhill – bloody bastard of a day.  I am determined though to not crash out completely.  Pack up the tools and potter around in circles for a bit trying to actually decide on how I am feeling and what is happening to me.  There is a change today in my head, and as I have said it is frightening, and now starting to worry me a bit   The best way I can describe it is having a shitty headache then standing there and spinning around in a circle for about 5 minutes, then trying to stand there and not throw up or wobble.  Yep, that is a good way to describe it.  Sue makes me a sandwich and drink for me for lunch then heads out to meet Sandra for a coffee and a catch up.  Lachie has his mate Lachie over today.  They have a great time and keep out of my way which is great.  Sue comes home and takes me to the Doctor appointment. 

All goes well really, pain killers have now been upped further so hopefully this will make day to day life more pleasant and manageable.  If I have to do so much sucking up everyday then so be it, but if I can mange the pain better then it will be far better.  Starting and continuing a day by not being able to walk or move because of pain is not a good thing.

Home and dinner, then blog time – well try to do the blog.  Watching TV and trying to stay ‘normal’.  Hope all have had a better day than I have, and are feeling good.  Take care.

Kia Kaha.

“May the bridges I burn light the way.” – Unknown

 Crap sleep again – too bloody hot, sore, restless, and wired – is that enough reasons??  Anyhow, end up with about 4 hours sleep all up through the night and reading about 3 hours.  Man it was muggy and hot last night, then I kept getting pain – normal now.  Then waking with my panic attacks where I can’t breath, probably due to the heat.  Use my magic med spray to try to get some sleep and it works a bit as I fall asleep downstairs on the couch.  Head back to bed about 3am then up again about 6am.  Beautiful, warm morning about 20 degrees already.  Decide to have an early breakfast and read the paper outside in the breeze.  Decide that it is a good morning for doing some painting, so I get the furniture oil out and oil the outside table, lazy Susan and chairs all by 7:30am.  To early??  Not a moment to waste today.  Only bugger really is pain – I have already had 2 very strong pain killers just to be able to do the staining!  Already peaking at 9 nearly 10’s!

On to the next thing and do some work on the computer next.  The house is still very quiet, actually the whole neighborhood is very quiet.  Get on with cleaning the pool next and put the filter pump on, then price airfares to Aussie to see big sis maybe.  Wow – really!!!  No plans for the day and if this pain continues then the day is going to be very quiet indeed.  Family start arising – first is Jacob whom looks like the walking dead and is refusing to go back to bed, then Sue then Lachie.  Quiet morning for all, so decide to take the dog for a long walk.  Head off for a 9km; 1 hour 40min walk!  First 30mins or so was torture, but grit teeth and loads of chatting with Jacob to aid as a distraction and I manage to hang in there and harden up princess as I would say.  Oh and  it is about 28 degrees too so zapping energy like nothing on earth.  Get home eventually after all the grumbles of the boys.

Have some lunch and more pain killers then head to Pioneer Liesure Centre to have a spa to see if it helps with my pain levels and Sue’s back pain.  Spend just over an hour there and get home feeling good.  Just enough time to get ready for the Nurse Maude Ditrict nurse to visit.  The nurse today is Jungwha (pronounced Chung Wah like the restaurant that used to be in town as she said).  She is a hard case very nice and easy to get on with Nurse.  Have a good discussion about a lot of things, but mainly the amount of pain I am in and how many ‘extra’ topup drugs I have to take to get through the day.  Off to see the Doctor tomorrow to talk about this more. 

Have dinner and then settle down to do the blog and watch some TV.  Not a big day by any means but a draining one in terms of pain and activity.  Another day made it without crashing out completely.  Feeling very on edge like I could have a siezure at any moment – not good really.  The weather has finally cooled down so I’m hoping I can have a decent sleep all night tonight – fingers crossed.  Hope all have had yet another relaxing day, and if you’ve had to work then it hasn’t been to busy.  I hope I have finally caught up with ll the txt msg from New Years now – if I haven’t yet then I’m sorry – I’ll get you soon.  I have tried though!  Take care, be good and just thing only 363 days till it comes around again

Kia Kaha.

Happy New Year!!!

I hope all have had a great time seeing in 2013 in the best possible way, and

are excited about the propects of what GOOD things it will bring in everyday and everyway.

“If you carry the same baggage you had this year into the New Year, your ability to move forward will be weighed down. Drop your bags at the doorstep of the old year, so you can make a change in the new.” – Eugene Nathaniel Butler 

Welcome to what can and with how I have woken will be an interesting year.  Wasn’t a late night by my party standards – got to bed about 1am, in fact thank you to the Booth and Connell families for staying to see it past midnight – I know some of you were shattered and could happily have been in bed by 10pm.  And also making it a managable evening for me as I can’t really handle the crowds or loud noises as such anymore.  The company was just right.  Thanks too Scotty and Junior for the phone call – hope the party was fun and the hangover is survivable – though you were sounding fine so don’t think there will be a problem there!  And everyone else, I really hope that you’ve had a great time and celebrated in the best way you wished.

Well bed about 1am – up again by 2am burning up with acid (bloody steroids, and other drugs and – OK,. I’ll admit it the coke in the bourbon) so spend another hour awake then firefighting my stomach, and end up falling asleep on the chair downstairs.  Wake again about 3:45 and crawl back to bed, and – yahoo day 2 of sleep!! Well until about 9:30 so in total I have now had enough to make it through the day.  Did I mention that yesterday I made it all the way through the day without crashing out with sleep, siezure or fatigue.  So I’m feeling really happy with myself about that.  I havefinished the year and started a new one in the way that I want to continue.  In reality I know though that I am only one glitch in my health away from a change to this all.  Sleepins are the order of the day today.  Sue is first up about 9:15am and I wake not long after, then Jacob comes in for New Year Good morning cuddles.  Lachlan makes it up eventually about 10:15.  No plans for today except relax and maybe head out for a walk later on dependiong on what the weather turns up.

Another quiet day, and just cruise around the house doing little in the morning, trying to escape the heat – seems we are having a summer this season after all. Jacobtalks to Sue and they plan to head to Westfield Riccarton – Lachie and I decide we will join them on the trip but do our own thing when there.  Get ready for the day and then dose up on pain meds as having a day like yesterday with pain, whereby getting waves of sore and aches (about 5-6 level) – through to agony (7-8 close to 9) sort of stuff.  Just have to stop and suck it up as managing pain killers closely and strickly still, after the easier more relaxed day on them on Sunday.  The good thing is they ‘seem’ to kick in quicker now.  But it is funny in a way too, as I am walking around the house panting like a pregnant woman in labour.  And with the way the steroids have blown me up again (chipmunk face, upper body bulk gain, and the latest additiion this time round – Hobbit feet!  Yep, I have cankles apparently and my calves just go from my lower leg to my toes – ugly man!!). 

Off to Riccarton, and to our surprise there is very few folk there.  Spend about 2 1/2 hours there just cruising the shops and buying a couple of necessities – a pair of shoes for Lachie and a cold drink and food.  Head home then via Roh and Andy’s to check out Andy’s new coffee machine.  Awesome work with the coffeee Andy – very nice coffee indeed.  End up staying for dinner and do my usual – sorry for drifting off and on several times   Have a lovely evening, then head home.  Struggling with pain, so dose up again and sort of come right.  Sit down to blog it so I can do M&D time and bed to rest as feeling very worn out again already.  Really hope all have recovered from hangovers, and late nights, and had a good day/arvo/evening.  Take care and relax.

Kia Kaha.

“We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year’s Day.” – Edith Lovejoy Pierce

 Well here we are, 31 Decemeber.  To say I started the year expecting to get here is true, to say that the journey I have had to get here has been harder than I or anyone expected would have to be the understatement of the year.  The one thing that I have learnt from this year though is that you can not, even with the best plans or intentions, count on fate throwing in her hand at will.  There has been tears, fears, hope, happiness, sadness, loss, gains, everything that can or could possibly be felt or emotively conceved I think I have experienced it. 

I have lost friends, gained new friends, felt heart break in new ways, but most of all learnt to look at the world and those in my world in a whole new way.  To say that you want to share the dreams of others, or help your children grow their dreams takes on a whole new meaning.  I wish there was a way that people got to at some time in their life, got to stand stripped bear of their life, and made to face the stark reality of their life and their own mortality.  I used to take life for granted and with little real value, until thrust into the limelight with cancer – the ‘C’ word, a sentence in a word.  Though these days cancer is not a sentence as much as it used to be, but of course me in my usual, lets do it difdferent way, pulled the odds of the century  out – 50 people worldwide per year are diagnosed with my cancer type – 50 people in ~ 7 billion!!!  What the hell – that even blows me away!!!  Yes, I have had the people going why the good ones, why you and not someone locked up for life in jail.  But the question is why not me?  Yes, I understand people wanting me to stay around, and the suffering could be going out to someone else, but really, based on those loose reasons doesn’t cut it.

Have I got given 3 of them to fight against because I have a very high pain tolerance already, so are able to endure it?  Or is it that I can show that even when the going gets tough, you can suck it up a bit and just get on with it, why?  Just because you can.  I nam not trying to be a marta or something, but I managed Radiation and Chemo together, and got told thgat I did it very well.  Then I did Chemo and was tracking well until the last round, when on that bloody black Tuesday all 4 wheels fell off at once (MRI, Chemo stopped, first siezure, ended up in hospital) – it was a huge kick in the guts morally, mentally and emotionally for me, and I am still trying to deal with it now.  The only good to come of it has been the getting of the new drug which has helped flip life back to a pre-diagnosis sort of state.  Wouldn’t it be great if we could just flip the whole of 2013 back to that state?  So what will 2013 bring?  I know for me a whole new fight, and probably the most determined and stubborn side of me is yet to truely emerge.  If you think I’ve put up a fight for my faculties, self dignity and my life so far then, wait till you see me when I really zone in on something.  I know that I will be spending the year fighting for my life – it is that simple and easy to say.  I just need you folk to have my back so to speak and support me and more importantly each other, as it is going to be tough going some days.  Don’t be scared to ask for help, or talk to each other – it is good and healthy to do do this.

So 2012 – you have been my year of hell.  You put a timer on my life.  You have taken 7 people from us through cancer, and 10 people all up.  You have passed the illness to another 5 people that I know as well – so I think for 2013 you can give handing out cancer a miss please, at least for several months. 

A toast for 2013 – May the goodness of a happy heart and joyous mind ensure that everyday is as special as you allow it to be, and as much fun as you can endure.

Sleep – yes I managed to get some – 7 hours of it straight!!!  I woke with a hell of a headache though and feeling like absolute crap, but I’ve had a decent sleep!!  Yipeee.  Up about 9:30 and just cruise as nothing needing really to be done today, and with the way my head is hurting it is taking a bit to get it under control.  So spend the day at home.  The kids break the tramp so, new tramp now before a spa pool   Thankfully none of them get hurt so no injuries to report.  Get the house in order we are entertaining people tonight for New Years.  Honestly – there is nothing to report in as it has been that quiet.  Jacob has done a load of gardening, and other yard work to help. 

Roh and Andy and the girls arrive, then the Booth family.  I get the blog done and out of the way so I can relax and man the BBQ.  I really hope that all have a fantastic evening, and don’t make silly resolutions.  Be good and behave.  Thank you for all been there for us in 2012.  I hope you will still be here in 2013 and continue enjoying the blog.  Take care and be safe.

Kia Kaha.