3 Too Many

“Sanity is a madness put to good uses.” ― George Santayana

Whats with this Spa Pool craziness going on?  I think I better have another look at what I said properly.  Painful sleep.  Got some sleep in but more spells of sleep rather than out cold Zzzzzz’sss!!!  If you know what I mean.  Manage to stay in bed until about 3:30am then get up as hurting to much and just really restless.  Head downstairs to get a Milo and to take what I can in tghe way of pain meds, then wait for them to kick in.  End up curling up on the couch with the cat and promptly fall asleep.  Wake again about 5:30am and head back to bed.  The day has warmed up to 22 already – could be another scorcher on the way I think.

Get up again about 9am – real lazy Sunday, and just cruise along.  Want to suggest we do breakfast out but decide against it as everyone is relaxed enough at home.  Jacob is at Brad’s so only Sue, Lachie and I here anyway.  Just set about coasting through the day as no plans have been made.  Only commitment is to mow the lawns.  Oh, and by the sounds of it, measure up for where a Spa pool can fit in   Might suggest then pool shopping, along with the other “needed” things like a new waste disposal, and a dish drawer dish washer.  I think that maybe a cash in of a life policy may be needed to fund this seen as the horses didn’t really help yesterday and I certainly didn’t win Lotto last night.  So if we’re cashing in a policy then, what else do we need?  Boys bikes, me a chaffeur,  a new car, coffee machine – oh hang on – I just realised I got carried away then and put somethings I want – can’r have that!  Just ignore me as usual, I will eventually go away   End up going to Bunnings to get a couple of new outside taps, and some other bits and bobs.  Then go to Norman Ross and buy a new beer fridge, cause we need one apparently.  Thanks Andy for coming to collect it.   Very helpful.  Kate and Lachie spend the arvo playing in the pool after Sue fixes the leak – thanks to the in adqueate assembly of this failing male   IO mow the lawns, and potter round the place.  Doing tidy up bits.

Trying to do a purge if you like of the meds I am on, and only take the nesseities so that when it comes to really needing them the ones I need more of will actually work better when I need them too.  It takes a bit of work and some practice to get it right but it can be done.  It is juts my take on how to handle all these meds.  And seen as 90% of what I am taking is pain killers, and to be able to get on top of the pain quicker with lower strenght drugs has to be good as far as I’m concerned.  The odd thing they can’t explain to me is what causing the pain in my lower back – that is the one that I really can do without as it stops you fast in your tracks when it kicks in.

Also been thinking and feeling sad about how I hurt people prior to getting this new drug, and the changes ithas brought about in me.  If I had it from the start (back in March this is), then what course would life have taken?  Would I have written so freely about things?  Would I have been so open about how living a life that is destined to end too soon?  Would I have lost the same people along the way?  So many questions and just blank answers.  I guess I can think a lot more about the answers and try to come up with them but I don’t know if I really have the time to put into it anymore, see I am wanting to now make sure that I get something positive out of each and everyday.  BTW – those folk that I never got in contact on Xmas day – I’m really sorry about – you were all on my mind and I did send my best wishes to you all virtually, it’s just I would’ve spent most of my day typing txt or msgs in reality. (Then again I never heard from some of you either ;-).  We may just try for New Years this time – eh??

Get through the day – painfully   I knew one of these days was due to arrive soon.  Just can’t pick them and they naw away at you like pesky little rodents.  Lisa and Jimmy visit.  I plod on as much as possible before crashing out – bugger it, I am trying to get a full day in without loosing time to sleep.  Quiet evening, trying to get the blog done before the siezures get hold of me and spoil it all.  Have a chat to Joh for a bit then finish blog properly.  Trust all have had a a fantastic day and not given in to spa pools or other such wims today.  Take care.

Kia Kaha.

“I wasn’t born with enough middle fingers to tell you how I really feel” – Unknown

 Well started the night off with sleep – hence Sue finishing typing the blog out.  Really struggling to understand what is tumour/siezure related now and what is just tirednesss, as the 2 cross very closely.  The only difference I can tell is that if I have fallen asleep then I can remember some of what has happened around me.  If it is siezure, then I have no recollection at all – a complete blackout really.  Such as Christmas Day and a couple f other days over tghe past week, I have “lost blocks” of life and time.  I try to recover what has happened but this is really to no avail.  I am also getting more forgetful, and struggling with word pronouncation and sentence construction some days (I know what I want to say but I can’t say it).  So after several minor night time panice attacks and a terrible bout of acid tum (lovely side effect of the steroids too), I have made it to 4am with sleep and given up getting anymore so have started doing the blog in case I have the usual rash moment and delete it all again as seems to be the case on a nightly routine now.  Head back to bed about 5am and get a few more zzz’s before having to wake for the day.

When waking at this hour I guess your brain still gets away on you like old time, even though you have the new magic spray to readjust your reality back to, well reality.  I mean that the deep thinking is still there but this new spray sort of realigns what you say and makes you think, well is it really true, or really how I am feeling as I have said, that I feel mentally different since getting given the spray.  Yep – 2013 is going to be a big year – I only really hope and I pray that it is big for the right reasons not the wrong one.  I have a lot to still do in life and making it thru another year is definitely one of them, just I have the odds a bit against me.  The other thing with the new spray, is how much masking is it doing over what is the real side of things.  Bit I still know and notice everyday a little more of me is crumbling /wearing away, and while I can fight to regain and re-establish control of say limbs or speech, it tires you out no end and I know there will be a point where I have to just conceed to what is going to happen to me, let it happen.  What will change next, no one knows and even the doctors can only throw in their best guesses.

Busy morning getting ready to head to the Family Fun Day at the Motukarara Races today, with the Connells and Knudsen families, and any one else that wants to turn up.  Usually a good day out and loads of fun for all.  And it is meant to get to 29 degrees today so will be another scorcher for all.  Load up the car and everyone then hit the road.  Find a perfect spot close to track, tote and everything.  Have a great fun day and a few laughs.  The horses and TAB held about even for the day so no heartbreaking losses thank goodness. Though I should check my tickets better as I had a $60 trifacta ticket, thank Tony for reminding me that I had the ticket.

Head home for a quick and easy dinner of pancakes and bacon and improtantly some chillout time.  Just cruise along, finish the blog, and then contemplate M&D time and bed.  Another day done and dusted.  Hope all haved indulged in the fun and froveltiy of a good day too and had some laughs along the way.  Take care, have fun and relax.

Kia Kaha.

“You are never too old to set another goal or too dream a new dream” – CS Lewis.

Getting sleep again , Yay!! Not lots but enough to start making me notice a difference during the day. So last night I think I managed 4 hours in total which isn’t great by any means, but better than the 1-2 that I was getting. Pain giving me hell tonight, so spend a lot of time walking around and sitting on the edge of it. Not fun in anyway. Trying to stop picking up the tablet in the middle off the night to as it is a bad habit that is helping to rob me of sleep ultimately.

Even though we are heading back to Christchurch today, I let everyone sleep in as we are still on holiday and seen as it is only 7am and don’t need to be anywhere early. Shuffle around the place, make some breakfast and read the news. Relaxing morning had, bags and car packed and checkout completed. Head off to the Fafitas then one last time for a coffee. Well I try to stay awake , sorry guys don’t really do that too well. There is a growing hatred for these subtle changes happening everyday. –

Set off for home about 11am, Jacob is co driver as I keep falling asleep, Lachlan and I get to hang out in the back seat. Between the bumpy roads, Sues driving and the wheels needing aligned I manage to bang my head twice on the window. Not happy. Stop at Maruia springs thermal pools, very hot, a good break in the trip. Have a bite to eat and then load back into the car and head for home. All three of us boys are asleep with ten minutes, so none of us are useful co-drivers. Lachlan wakes me just as we get home. Unload the car – great to be home, washing done and on the line, lazy f and c for tea. Kids to bed… day done. I have fallen into a deep sleep next to Sue on the sofa … so she has finished my blog

(She thinks we should get a spa to aid my sleep if this is what I’m like after an hour at the thermal pools!)

Kia Kaha (from us both).

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

5-6 hours broken sleep but at least I’ve had some sleep. So I’ll class it as a a victory. But with that much sleep then why the hell do I feel so bloody lousy. To much sleep now? Christ I can’t bloody win. Too little sleep and feel shit,to much sleep and feel well shitty too. Probably due to the heat though as it nearly got below mid twenties last night.

So anyway, woken about 7:30am and up and into the day. Have breakfast and cuppa. Then get the day going. Cook breakfast for masses then,get ready to face the day. Don’t have to shave my head as I was bored and had a steady hand and did that at 2am. The plan is we had off to meet the Fafitas and Johnson’s families then have a picnic day sort of thing with them at Rabbitt Island.

Feeling so much better today than yesterday. So intend to make the most of unused of energy levels, etc. Head to the supermarket to pick up some essentials then meet at the Fafitas. Follow them out to the Island. Have an incredibly funday catching up like old Times, with everyone,and enjoying watching the new additions to the families, including Jaron – our beautiful Godson. Love that the hyper, attitude, wee man is our special man. Definitely full of life and beans, and one hell of a great set of screaming lungs! I have to call it quits about 3pm as pain and fatigue are beating me down again. Sue drives me back to the motel and I have a lady down but no sleep for a bit, which is enough to revive me. The boys have stayed with the others and we head off back to the Fafitas for a BBQ dinner and more catching up. Head home about 8am as the boys tied and I’m on the drop again. Get home and watch the movie “Marley and Me” and do the blog.

I’ve had a couple of emotional spells today,with just waves of tears hitting me without warning. I’m wondering if it is caused by my rumorsor the new drugs,this new clarity? It is hard to describe, but at one spell today, I had this huge reality check get me. I’m dying! No really, take a breath here you silly fool ,but you are. Don’t ask why or where it came from but it felt good to let it out and also to in a strange way to set some of me free as well. Hope this makes sense. I will try to make it clearer tomorrow may be when my laptop and I are backtogether again, but trying this conversation/explanation from a tablet computer is not easy.

What a fun day. Lots of relaxation and fun. And catching up. Really hope that all have had a brilliant fun day too. Home on Friday and back to reality. Thinking of you all. Take care.

Kia Kaha.

Just a quick note that today won’t be long as I’ve broken down more than normal.

Basically arrived in Nelson, sent to the , went shopping headed to the motel then wham. Head hurting like hell, kept falling into seizures. Meant to be going to Rach and Leroy’s for a bbq for tea. At this stage I think a focus on staying away from the local hospital.

It is that bloody hot still too. But in medical terms, pain is coursing through me at about a 7 level, head feels like it has a railway spike getting hammered into it. Tonight is going to be all about keeping me ticking over. So that said. Hope all have had a fantastic day. Sorry gotta go – pain!

Kia Kaha.

“Remember, if Christmas isn’t found in your heart, you won’t find it under a tree.” – Charlotte Carpenter.

I wish you a Merry Christmas, I wish you a Merry Christmas, and a Happy New Year – there you go, all I can muster for now, so save it for another date if you want.  In case you missed it, like the end of the world, today is Christmas

I could start with the fact that I have had some sleep.  Real sleep – not  a lot, but it will count.  And now I feel as flat as road kill again – bugger!!!  I have started the blog several time to try to get it out early for you my loyal fans.  Unfortunately these lovely seizures have a bit of fun with me along the way.  You see I am typing then they hit –  no warning, and my hand or fingers will process what I was doing, so they then delete the bloody blog, and cause I can go out to it for several minutes at a time so plenty of time for auto save to over write the file too.  It really pisses me off while also making me laugh at the irony of it all.  I always wondered what my first seizure would be like and, in going with the how I am style, for me I was picking an arm flaying, full noise, episode.  Not a gental drop off/blackout style, act.  But they have said that it, in most cases, would and will change to a different sort.  Back to the night – so yep, managed soem sleep – thanks Santa!  Though why do I feel so tired all day?

Anyhow – everyone still asleep about 7:15am so I get up and do breakfast, meds and a cuppa.  It is going to be a ripper of a day as there is hardly a cloud in the sky, it is 7:30 and already 24 degrees!  The rest of the family slowly drag themselves up.  Just cruise then eventually head off to the Vineyard about 10am.  What a pleasant stroll – warm, very gentle breeze, bearly any traffic, and only the sound of birds around.  Fantastic.

Have a very cruisy day –  install the WiFi at the vineyard, then we sit down to do the presents.  Quiet a few tears are shed (happy ones thank fully).  The Lads are wrapped with their presents and settle down to setup their iPods, etc.  Nice when they help each other now, and Dad is redundant, unless authorising purchases.  Temperature has now hit 35 and still going up.  Tempers are staying very low and flat.  I got a new watch (yep another one), that does everything (temp, altitude, GPS, pedometer, digital compass) oh and it tells the time in 9 countries.  Guess I should learn how to use it.  The funny thing is that it sits there most of the time saying IDLE – you think – I don’t use the other gears much now

Go for a walk about 2pm – it is now 39 degrees!!!  How is that for a summer scorcher Christmas day.  Get home just in time to have the feast – Chicken, and Lamb.  The lamb is so tender that it is falling apart.  Do the usual Christmas thing and overeat, still – 1 day a year.  Fantastic meal and an awesome evening with great company.  Not one niggle, argument, or gripe.  Just near to perfect.

Head is hurting quite a bit so try to control it with meds.  It takes quite a bit of time to shake it but I do manage too, well sort of.  Talk to Joh quickly when we get back to the motel.  Sorry it’s taken a day to call Joh.  To all those that have messaged me today – I will get back to you all individually, and do a reply.   Trying to find time on holiday is very time consuming – phew!!

I have one quick mention to make as it has been passed to me.  No, I have not got myself in a dark place with thinking this is my last Christmas (Probably 2-3 weeks ago before my magic drug was delivered it would be a different story).  I have had a brilliant Christmas and now have the approach that I, as everyone of us is dying, but just a little quicker than others.  No point worrying about how or when as it is going too happen.

Hope all have had a fabulous and fun and spoilt Christmas.  Sorry the blog is so late.  I see they’ve done even more changes to it – ahhh!  Right time for rest now as off to Nelson Wednesday to catch up with folks there.  Take care, make all times special and please be careful on the roads.

Kia Kaha.

“People that don’t know me think I’m shy. People who do know me wish I were.” – Unknown

No fantastic sleep pattern to report but did manage to get in a solid spell of 2 hours before waking. Very humid morning and get busy mucking around the house. Keep myself busy specing up a laptop that someone has ordered from me. Not to bad a unit of I say so myself. Decide to get ready for the day even though it is only 7 am and a Sunday! Tried the going back to sleep thing to buy no joy.

Joh calls and we’d have a good but quick catch up. Hope the throat feels better really soon. Bet it’s not nice with the Aussie heat. Pete Stills then arrives as a surprise with a couple of little gifts for Sue and I. Thank you so much Pete they will go down a treat I’m sure. Also you’ll definitely be over to assist in an official capacity anyway.  Load up the car and head off to see Dad and give him his Xmas gifts as he joins the ship again on Monday and the we will miss him otherwise. This has to be the highlight of the day actually as it has been so long since I’ve really seen Dad smile like he did. And he was visibly moved. It also made me feel really good – . In a warm fuzzy way that is sicko! Definitely rates as a highlight of my year.

Had an interesting discussion about my new magic med, and yet another confirmation of how much change the need has bright, which its fantastic to hear. But also it is still scaring me as to just how low I really had got. Oh well. Guess what -, I’m back! Insert evil laugh here Bloody pain is riding at a new high level today as well. Grit teeth and bear it, as much as I can. Though it is 2:30 am and I can hardly move, trying to hold down extreme tum pain so burning up to (lovely side effect of the steroids). So much to hate in these bloody mess they have me on. Anyway, not going to focus on the down. I have one thing that needs to happen this year -I have to and are definitely planning on it, the most awesome Christmas. And we know why!

Catch up with Alex, Vicki and the kids for lunch and a general chat. Nice. Haven’t seen you all for a fair while.  Quiet evening. Just dinner, then try to get the blog done. This is really starting to get me angry. Not sure what make you want to rollout such a change at Xmas. Anyway, it’s beyond my control. Otherwise, that is about the sum total of my Sunday. Hope you’ve all had a lovely Sunday and a bit more exciting than mine.

Kia Kaha.

“There is no pleasure in having nothing to do; the fun is having lots to do and not doing it.“– Andrew Jackson

First up quick apologise for the slow posting, but lots on as it is that time of year and they are still bloody messing with the website so I can’t post sometimes and then I can but it goes invisible. Trying to figure what’s happening with it really. So the bonus will be quick brief blogs. So that said, let’s try Saturday as a quickie – ew err

We won’t cover sleep unless there is something remarkable to report, like 6-7 hours sleep. Oh wait as a combined total I did manage too get close to 6 hours I think. Trouble there were 2 x 2-3 hours of awakening in there. Up early and cuppa, breakfast, and read the paper. See some good deals for Xmas pressies so decide on a plan of attack for being able to get around the shop to get them. Plan comes together well, though time has gotten away so Sue feeling very stressed – I’m sorry. Doesn’t help either probably with me vacating my brain at times. Have I said I hate these tumors? Stop by Jo, Tony and Amy’s – sorry guys for not being awake when there.

Home briefly to get stuff and drop others off. Then head off to the Booths to visit the new deck and admire the new table – (pics of both coming soon, well when the website works properly). Better and wine toast the efforts –  well done Greg and Wendy, good effort on getting it all done and sorted. Off then to visit Roh and the girls as Andy still at work. Have a couple of drinks then walk home as things to get done. Andy, Roh and the girls – come round for a visit them. I know visit go rounds! Deb and Glen come over for a drink and a chat too. Well after all it is the season to be, well social! Have a great night. The kids stretch out and watch movies, chat and generally learn to be socialites too.

People start to leave about mid night. I’m feeling really good so stay up and clean up, help settle the lads down, then have a late M&D time. Yep Glen still drugs to be taken even at 1 am. So there we have it, the short abridged version of the day work for you? Hope all have had a great Saturday with lots of relaxing & socialising. Now a joke too end the blog. Hope this doesn’t offend anyone –

2 Dyslexics run into a bank and shout: Air in the hands Mother Stickers, This is a fuck up!!

Kia Kaha.

“Science may have found a cure for most evils; but it has found no remedy for the worst of them all — the apathy of human beings.”  ― Helen Keller

Well with all the sleep from yesterday while I was meant tot be having dinner, etc, and being social I feel fairly well rested all round. Though I have been up since 5am (I think). Didn’t wake with night terrors or my bug buddies doing a countdown them jumping on me either. So all in all a good as close to restful sleep as I’ve had in a long time.  Sorry the blogs late again today but between work, seizures, fatigue, life, kids, the webmaster making changes to the blog hosting site (gggrrrr – don’t get me going on that one) things are a little busy this time of year. So to say the least that for me to waste your previous time even more with more dribble than usual would be an insult of sorts.

As I said up early to watch the end of days begin – did the Mayans really get it right or did they know that we had a cunning plan already that would supersede their one? Either way no prizes for knowing what happened – yep I got to have a second bowl of honey puffs while waiting – oh no sorry, wrong line -ahh the world didn’t end, so sorry folks bills still to be paid next due date – esp. The one on the rental of the Chinese life support capsule

What a beautiful morning. Not to hot, just awesome. If there is one benefit to these MoFo’s then I guess it is having this messed up sleep pattern means you get to see some awesome sun rises, perfectly still, picture perfect dawns, etc. The late spring air just perfumed enough to make it enjoyable. Good grief, I’m sounding very feminine! Login to work then spray the lawn as it is still as air wise. Boys sleep in a bit then drag their sorry little butts out of bed to. Get ready to faced the day. Working from home today to as have Nurse Maude paying a visit.

Quiet day but stay if that makes sense.  The boys get put to work as they always do this time of year, picking, weighting and selling Plums. Thanks Glenn for helping to organize the table and things. My head space wasn’t brilliant today. Craig drops Matt over to hang with the lads. They have a great time and there is not a single issue from anyone – mainly me. Love it when days just flow smoothly. Well so I thought. Had to crash out about 11 am as I was probably very close to collapsing, and that is not what the boys need!  Have a rest for about an hour and wake ready to take on the arvo. The lads talk me into letting them get fish and chips for lunch. Should make them pay from their earnings, but are kind and don’t (I wouldn’t anyway).

Quiet arvo too. The Doctor from Nurse Maude arrives to give me a check up following on from my Doctors appointment and the nurses appointments earlier this week. So now I have 2 GP Doctors, 2 District Nurses, a Professor,a Neurosurgeon and a Neurologist, and a Pharmacist – phew!! And I only started with a head ache B-) If anything from this whole messed up world of mine, it shows the NZ health system does work, does care, and yes I know I am one voice in masses, but I have not found s point to falter on really through out this all. Just always remember this – keep notes, lots of them, and a diary of all appointments, of you, of someone you are caring about, it makes everything so much easier, and my God send has been the fact that Sue being a Personal Assistant to Execs (previously) and needing incredible accuracy in her current role, means everything is ticked, checked, documented double checked and questioned without hesitation. Really, I think without her I’d be in a corner rocking and not getting to my appointments, etc.

The Doctor goes well, slight changes in medication dose levels up again as getting to much pain breaking through. And get a backup brew of my new magic drug ordered as well. It is fantastic stuff, in case I haven’t already told you. Good I feel at times so much more like my old self that it scares me. But it is great for those around me. I had a call yesterday from someone that I spoke to on Monday. They were that concerned about me and my mental and emotional state that they needed to check-in. Now the fact they were prepared to be that blunt about why they called me says a lot about them as a person and how they know me really as a person. But during talking to them what got me is that they said on Monday my voice told far more than I could ever cover. I’ve always prided myself on the fact that I can wear many masks depending on the situation, but it seems in this case that I could cover up. After talking a lot with people close to me about it, it seems that even by my stubborn status had let myself get that low, that quick. But I am now out of this stage and back to bear on my old self. Thanks for recognising and being so honest about your concerns for me. It helped me in so many more ways than a simple snap out of it attitude. If you ever do see, notice or some how recognised a person that seems to be not quiet themselves v ice it press. I know it is a risky call sometimes, but in my case it is they know me and my voice said volumes, and I feel very humbled by their actions.

Evening is a right off as fatigue and seizures having their way with me big time. What a way to waste time. I really mean that. Ok,I accept that i could in reality be having dramatic funky chicken hospital needed one’s, . But basically sleeping the whole evening away makes for a very lonely place for Sue.  Anyhow I have arrived here after blacking out for an hour – fantastic, I’ll count that as sleep. Trust all survived their Fridays we’ll and enjoyed missing the end of the world. Take care.

Kia Kaha.