3 Too Many

Early start again today – up at 5 am – head and tum hurting so downstairs for drugs.  Decide to make a MIlo and do Saturday’s blog as feeling wide awake.  managed to have about 6 hours straight sleep last night and physically feeling the best I have in days – yay.  This could also be due to having the drug schedule all but sorted so feel relaxed about that now.  As I’ve said it is a petty point in away – but look at it from the point of view that since we’ve found out about these things and their terminal nature I have focused myself on the fact that I will not give in to them without a battle, and we are now standing at point of the first real shots been fired in making sure I stay on this earth as long as I can (yes there’s been skirmishes with Wilson along the way & he is trying to return) but this is it now – tomorrow we’re on! 

Busy day today – boys and I have footy photos this morning down at Halswell – from 10am – 12pm. Only a couple of hours but it takes it toll standing and moving around.  Still have a good time catching up with folk – a laugh.  Fridge and Nutty fire up the BBQ and get me some of my special bread to make sure I’m happy  (no jelly beans?) Scoff a couple of sausages – perfect top up as it means that I can get home then have my lunch pills quickly as we are heading out to my best mates place G & Lisa’s in Waikuku about 40 minutes north of ChCh. 

Great to see G, Lisa, Daniel & Blake.  I ‘ve a got a new wireless router for them so set about getting it installed.  Have a fat chat about lots while working away.  Murphy’s Law that it doesn’t go straight away – had to happen didn’t it!  Turns out that there is a build error for the model of Router and there are 2 fields that are identical but set different parameters – one is labelled PPPoE the other is PPPoA – I was setting what I thought was the right one but it wasn’t – gggrrr – all because some muppet in  factory keyed the screen in wrong really!!!!  All sorted anyway – but it has drained me.  Give G & Lisa a rundown of connecting device, and test run of it all –  then Time to hit the road as fading hugely.  Leave feeling happy knowing they are working fine and all good.

Hear from the Bisley family on the way home that they are popping by to visit – which is great to catch up as haven’t seen them all for so long.  Decide we’ll do a F&C tea together as well – prefect as I have been hanging out and hoping that we could have them for tea tonight.  Decide to recharge so go to sleep in the car on the way home.

Wake feeling a bit more refreshed – I have now learnt to take the nap & rest when available.  Brendan, Amy, Gabby & Theo arrive bearing baking – yum (settle droids).  Have a great catch up and yummy tea.  Kids all have a great time together playing.  Fading again – but will hang in there.

Thank you to all who have called or text  tonight – it i awesome to have our support and hear from you all. 

Another day done – I am very exhausted but in a good head space and ready to take tomorrow head on.

M&D time now –  with a choccie muffin from Amy

Kia Kaha.

Sorry for the lateness of Saturday’s posting – been a very busy tiring day

Another early starter – awake at 5am in pain (but yahoo – slept for about 5.5 hours straight) – chest and head – so drug up & crawl back to bed & manage to doze till about 6:30 when brian turns on.  I wish I could just wake up slowly as you normally do.  See when I wake now, it is eyes open instant on – body has to just get ready to move.  Brain can already be processing lots of things and planning or have planned the day for you.  Find myself feeling agitated already, but odd as feel physically great, and mentally really good.  Have  a think about what the 3 amigbro’s have mulled on overnight –  only thing that comes to light – treatment schedule – again.  I know – it will be fine, the hospital have given me the list of drugs when to have them, etc an Sue’ typing out the checklist for me to see and be able to physically tick off on the fridge.  Have to think more about this as to why it is consuming me.  It is probably getting to me as I know it has to be done precisely as this is the frontline of the attack to extend the rest of my life – I need in my mind to have this dead right.  It is huge deal to me! 

Toddle off downstairs as footy day so will get breakfasts ready tidy kitchen and just keep busy & think.  Enjoy just toddling like this.  All is going great  – let all sleep in as Lachie is first game up today so needs to leave at 9am and doesn’t need to eat til about 8:30 at latest got to let their tums process a good brekky at least an hour before playing else could get stitch, etc (I know sport nutritionist Dad coming through and been anal about these things – but got to fuel a physical body activity properly to enjoy it).  All going great until I go to get my brekky.  I notice that Wilson is starting to try to make a subtle return – arm tingling and fingers have sensation changes on the ends – it’ ok can deal to this. But my taste buds are all screwed up and there is really only one bread (McKenzie Southern Grain) I eat and can taste properly, and we have run out of it.  Now this is not a major issue – simply go get more.  Great idea, I’ll jump in the car,- wait I can’t, I’ll walk to Supermarket – 40 min round trip – nope it’s 7:45 now and I’ll still have to come back, cook brekky, eat it, not enough time.  Now it sounds petty or easily solved – just wake Sue and ask if she can go get it, or just eat crumpets or white bread but this is what I have finding more recently in the short term some mental processing changes with these 3 unwanted things.  Logic is thrown out the window, OCD (yes I have these tendencies to need my ducks in a row or the shotguns out at them) and I go in a nasty tail spin.  In this case it happens bigtime – agitation starts to give way to anger at the idea that I’m not going to have breakfast at all, my bloody one food I look forward to (which is odd really cause I never liked full grain breads or eaten a lot of bread over the past few months) is ruining my whole bloody day.  And I am letting it, and feel powerless to stop it.  AHHH!!!! I know it sounds like the mad rambling of a OCD freak – but I am just trying to get across how these things re obviously doing things to me that you may not notice, but if you do see or talk to me and I am flustered a bit chances are it is cause of a ‘wee’ moment I’ve had or are having.  What probably compounded it more i this case was that the fact I couldn’t just jump in the car and drive – an obvious sign that I am ill and don’t have the freedom I used to hit me and it hurt. I could have walked or jogged too, but again – this was worse – I am already hurting and planning to watch 3 footy games today and need my physical strength to make it thru the day – again – these bloody things have got their way.  It just frustrates the piss out of you to be blunt!!!  Enough venting anyway.  Thankfully it is toned down!  Sue saves the day and goes to supermarket to get my bread – yay!

Off to Lachlans footy – have gotten over myself and the thunderous mood of earlier – feeling physically good, but head is a little errire faire  (well more than normal).  The 11A’s have  a real game of 2 halves against a sharp-looking Selwyn team unfortunately – gives a bit to work on at practice on Tuesday.  They loose 6-2 (conceded 5 in the first half but manage to hold them at bay 1-1 in second half).

Off to see the end of Jacob’s game at Halswell then.  He’s having a blinder – in on everything and a huge amount of running – fantastic to see. Fish his coach even says he’s have a great game when i get there before I ask.  Well impressed.  Unfortunately they go down 3-0 to Waimak.  Jacob picks up a double injury and is gutted – got an ankle tap, and booted in the hamstring at the same time so limps off.  Is determined to stay on but he can bearly move, so he’s subbed – and gutted – feel sorry for him, as it’s the hamstring that’s sore. Explain he has to stay off for muscular injury – an ankle tap you can run off and will settle quickly – muscle is different. He still gets Player of the Day for his efforts – so fantastic effort my Son.

Home for lunch then Craig picks me up to go to the Halswell PInkies game against the Ferrymead Navy lads.  Good game for us, slow pace but our attack is down from the previous week – no one hitting anything at goal with any anger.Mind the Ferymead team are looking as lively with a couple of chances, then with about 20 to go the Ferrymead boys seem to realise that it is 0-0 still and put their foot down.  Ferrymead win a penalty – 1-0 Ferrymead.  Bugger it! Pinkies dig it in till the end to find an equalizer, but not our day. Great effort lads.  Off to Speights Ale House (Ferrymead sponsor) for a team drink and the collection of fines  

Having dinner and a catch up tonight with the Booth family, while Jacob is at the last night of the school Production.  Have a lovely evening just chilling and chewing the fat.  I’m shattered – and it shows when I start dozing off after the delicous dinner Greg cooked, in the chair – so sorry guys – I was just beyond it after a day of being on my feet all day.  Feel bad   IT was a lovely way to round out th day though.

M&D time was quick!  I have no recollection of head hitting the pillow – nice!

Kia Kaha.

Well how is this for starting a new day – it’s 5:45am and already about to douse you in the depths of the day! Have a busy day ahead – well for me I think anyway and as we’re at Jacob’s school production tonight I don’t want to be late posting – more tiring to manage my time better folks too.  And this is a good reason to skip the gym – ssshh – I won’t tell – this once.

As I said 5:45am  – yep another restless night but oddly don’t feel tired or physically drained. There are lots of things rattling round the head as usual – including my meds chart for next week and interlocking what I’m on now with the Chemo “diet” that had to lock in to the Radiation plan – see if only there was Cancer for dummies book to explain this – but then each treatment approach is different so imagine how big it would be.  What I’m trying to say is that 8 weeks ago Oncology was where people whom are really sick needed to go.  Now I know the area well – know about Brian cancer have heard from incredible people out there facing it – this is what I struggle with – when people say about things about life not been fair and me getting dealt this – I can actually cope with it – I haven’t lived life to the full or my maximum potential – but I’m 44 and are happy that I have got somewhere! When you have weeks old to teen kids that have spent years/lifetimes fighting against Cancer never really having a chance to be a kid without restraint is what I find the hardest thing to deal with – that’s when it is not fair – well to me anyway.  Back to what I was saying – the realisation of not knowing how Oncology support  & treatment assembles around you is quiet amazing.  The people are all so calm and settled and assuring it is hard to feel stressed.  But I am feeling stressed about this bloody drug plan as I must take this before that which has to be an hour before this treatment but half an hour before food with this one half an hour before lunch and an hour after Radiation – yep really – this is what it is like honest!   Hence why I’m playing it through in my head.  Oh and I am allowed to eat some food in there to just make sure that the pills have packing to stay down cause they can make you sick – you think!  That many drugs and you ‘could’ feel nauseous!

Anyhow – Yep – guess this is the theme of another teary start – sorry – Woke several times in tears over different things during the night. I guess it was more because as my treatment is on in the mornings and the first couple of days is about 3 other appts per day I won’t be in the office next week.  But the biggest thing that is probably getting me is that I don’t do drugs very well – and with the potency of these drugs – I probably will get slammed from the start!  BUt then as it is unknown – I really must approach it with an open positive mind, in that I will not fold into this via the treatment easily.  I will fight on as much and long as I can – the treatment is my ally and I must therefore embrace it s much as I can regardless of its disregard for my safety along the way. 

Dad is my driver today and we rush out the door with Jacob for school and work.  Stop at Cafe Raeward to grab a coffee and meet the rest of PortaCare for the usual Friday morning breakfast – ahh meeting   Very yummy as always.  Back to Logistics – and feel in a strange head space – think it is more just emotion as it could be the last time I am based at Logisitics – the move to the new building will be happening in 3 weeks. Funny how a temp setup grows homely – in a way it was a good thing for a corporate of multi levels to have the walls between departments broken down.  New friends made, common interests discovered, appreciation of jobs taken on board.  From IT we get to see a different view of the business as we touch every part of it. Hope it continues in town.

PortaCare – (just thought we’ll need a new name soon when we’re on level 5),  head into the building to check it out and setup a webcam looking at the Cathedral, etc. Sorry it is on the internal network so you can’t have a link to it.  Say sad goodbyes to Cath, Alison & Bernard in the Red Zone – as it could /will be several weeks before I see them again and they have all been so awesome in keeping me busy and watching out for me at work – my own work angel team!  Thanks Guys.  Then Jono then drops me home – and none too soon – I’m soooooo – tired and need a lay down.

Rest time – had about an hour kip.  Dinner – thanks Sarah & Rowdy – the bake was delicious  and handy to have tonight.  Then off to the St. Thomas /Villa Maria stage Production of Alladin Jacob is working on.  What a fantastically awesome show – done as a modern musical – hell some of the kids can sing and act.  Hats off to all  – such a funny toe tapping sing along night!  Very well done.  Was a couple of sad moments though as songs I have though of for funeral were sung – managed to hold it together though just (it was dark  & no one could see me – Lachie kept holding my arm to make sure I was OK – great wee wing man he is)   Incredibly shattered – mind you think I’ve only have about 12 hours real sleep in 4 days – so that could explain it.

Off to bed now as TV is rubbish, and as I’m so tired I can’t focus on the keyboard properly I’ll give up. M&D time for another day.

Kia Kaha 

Well another day bites the dust! Well over yesterdays rollercoaster of sadness and tears.  Guess days like that will happen occasionally and they need to happen as it is healthy for all.  Had a crappy sleep in the end – managed to go to sleep about 2am ish and wake up at 5:30am – but feel fantastic – alive, fresh and awake – strange!!  Lay their processing the night’s work by th 3 amigbros’ and there is nothing of wisdom or inspiration that they really wish to share – so lucky for all you this will be short reading

Decide to drag my butt out of bed at 6:15 towards the gym – well that is the intention – slack bum then decides that checking emails overnight is more fun – so parks chuff to have a quick look-see – promise.  Bloody cold – need a cuppa tea while I check these to warm up – body’s saying gym you slack ass – brain’s saying flag it dang fool – make a protein shake, a cuppa tea and surf the web – Wilson needs some typing practice – and that is more important than pumping weights to be fit.  It’s ll about not loosing control of Wilson again – also save your energy too as you have o take Lachie’s footy practice so need to preserve yourself for that.  So protein shake for Wilson and a cuppa tea for me wins – bugger though email sucks no good deals to buy or anything exciting happened overnight bugger well that just wasted 25 mins!.

Ring my driver for the day – Dad at 7am to make sure he is coming over. Off to work then via Jacob school. My Porta care usual are there including Ann been back but she is only half daying as about to fly off to the next site to Train the happy users.  We get some more PortaCare photos by Cath – they all look very cool – thanks Cath.  I don’t like my pic getting taken but have learnt to suck it up (Princess) in the past few weeks.  Well pretend too

Spend time cleaning up crap around my desk, and area as from next week probably won’t be out t logistics much due to treatment , and also we maybe in the new building working in the next 3 weeks anyway to it makes it easier for others, if my hoards of stuff is arranged better.  Wow – really I have that much stuff sadly most of it is food yes I’m a boy scout and always have knibbles stashed in case in my desk.  Need to use some of it too as fading quickly ion burst today – mentally doing well but physically I’m folding in waves.

Dad picks me up at 1:30 – and not to soon as need to rest.  Home via hardware store to get a panel heater for upstairs last night was too chilly for me. Then collect Jacob on the way.  Home and want to crash but can’ t as need o get ready for Lachies footy practice I’m taking.  Muster up the energy to take it and warp up warm as feeling the cold lots now – bugger it!

Practice goes well – trying to keep A teAm players going with skills is hard sometimes – and thy want some challenges good taxing of drills on the mind.  Still make them run always works a treat! Sorry kids.  Drop Jacob at school stage production (head is working on the lighting crew and has been for the past 4 weeks – poor bugger is tired as – they don’t finish till 10 tonight – but he has committed to it, and he hasn’t grumble once so got to support volunteering for the school.).  I’m very proud of what he is doing.  We’re off to see it tomorrow night (finishes Saturday).

Just finish installing the new panel heater (yes Wilson helped and got it right) when we get a surprise visit from my good mate Rowdy – he arrives bearing food gifts – settle droid tummy – you will feast soon (joking). Awesome to see you mate – have a fat chat about all sorts – nice way to unwind a weary mind.  Thanks for the visit Rowdy – thoroughly enjoyed it.

Blog time – as fading more quickly now.  Tomorrow is going to be a long sore day if I do not seek sleep and rest soon. So folks – short & brief today – sorry.  M&D time now.

Till morrow becomes the present day and the night is far away again waiting for the light of sun may your gift of time be eternal fun.

Kia Kaha.

Another restless night brain wise – things going through my head but not keeping me awake thankfully – just processing stuff in the background thankfully. woke about 5:45 as now seems to be my new norm feeling sad – actually not sad – more sorry for myself   Decide to head to the gym to let it out and think.  Pit stop and get met with the rising tide again – ahh really – why on a cold night an at 6am- mongrel pump jamming!!! Share complements with it when I open the lid about not missing it when I’m gone or in its case I can almost guarantee – it will be when it is gone!  Fortunately a couple of angry words and flicks of the trip switch and it sees better of its state and obliges to start it self – yay. 

45 mins in gym – listening to how much hurt is going on and wondering why new pains in strange places are occurring.  So out of energy and breath today.  The breath thing is due to the tumors and their effect on the left side of my body – my left lung doesn’t inflate as much sometimes and causes me to lose breath very quickly bloody unwanted mates don’t play fair some days.  Still did the sensible thing I feel and stopped early.  Feel good still so very happy.  Head not in a good place though.

When I say that head isn’t in a good place – I am meaning that I was mulling over most of the night about how life has changed so much in just 8 weeks today – since I felt/noticed something change in me! I look at where I was at that point in my life – and now to where I/we/us are all at with what’s happening.  I say that as a global thing as if you are reading this then you know me so I know that in someway it will be impacting on you – hopefully in a positive way in that if you know anyone else whoever has to face a battle like this there is just a little bit of these rambles that you can give to them that could help.   Yes life has changed massively – and I knew a day/night would arrive like this.  I am not saying – it hasn’t happened before – it is more that it has now really hit me as I am standing on the rough edge of a black-hole of treatment with unknown effects (we will find that out in due course) that will be putting me to hell for the next 8.5 months total with the aim to extend my life – which I am more than ready to fight tooth and nail and everything else for.  But 8 weeks ago I was fit and ready to face the world another footy season – feeling great with everything – could plan a future.  Now I am facing an unknown that has an end result that we will get too but in a distance.  Don’t get me wrong on this I am not feeling angry, or that about what I have  – as I have said before I have accepted it and can’t say why me cause it is more a case of why not – I’m just trying to get out what the head space is like.   So with out the specifics of what it’s like  – it is easier to say it is hard to not plan or think of the future and see what you will be missing.

Off to work this morning in the new building in town again.  Meet Bernard by the Art Gallery and do the rumble though the cordon – admire how deep a hole they have dug under what was Brannigans building.  Another hole in the heart of the city – plenty more yet to do unfortunately.  Meet the contractors on site that we need too – then setup in the cafeteria with our laptops.  If things are to fall, into line some days then this is one of them, as working in quiet different surroundings is what I need today with how I’m feeling.  Our caffeine requirements kicks in so we soon venture out in our grid of the Red Zone – which luckily covers the square.  Round to the Bacon buttie truck! Only coffee on order is instant – workers coffee – I’ll forgive the lack of Batista’s wanting to work in a demolition zone this once – but the bonus for instant coffee is a fresh hot bacon buttie!! – yum – and made by the most cheerful Englishman I’ve met – just like been back in London and the guy that had th same sort of van across from Ford where I worked.  Get a new pic of the spire – well the stump now – gone almost.

The Spire and Cathedral front 2 May

Back to Logistics – then off to lunch  – I know the hard life of IT – eat and cruise forbidden zones of the city  – I have been doing some work in amongst this and Bernard and I having fat chats about work related things too – well what I can remember comes into it as well.  Pleased to see all the rest of the PortaCare crew – they’re all looking happy and smiling – which is what I need today.

Off to Cafe Raeward – yep got to do the free plug for them – they do really look after us well – 7 for lunch no reservation – and they ask customers to move to fit us in – brilliant!  NIce to have a catch up with Ann whose been traveling with work training staff.

Back to Logistics then – and a team photo (I hate photos but have had to accept that I for some funny reason maybe in demand a bit more than normal).  I am getting picked up at 1:30 as not having a good day energy wise – breath running out more, drained and I need to rest).

Home to sleep – get an hour and a bit kip in and wake feeling much better than I was but lung still not brilliant. Keep getting out of breath as before – bloody frustrating! Leg aching still too – bloody body  – sort it out! You can’t crap out now – we haven’t started the fight properly yet. 

Off to meet Kirsty at the Halswell Quarry to get some family pics done.  Man it is bloody cold.  Do lots of different shots. The boys then run off to do something – and it all just briefly hits me from what I said earlier – watching them disappear without a worry in the world as I stand & watch thinking how free & unknown their world is while this is a moment I will be treasuring because of the finality of my own world. And while they are very much part of what is happening, I doubt they will realise what it meant to me seeing them like that.  Lachie comes back and gives me a big hug and asks If I’m OK – so maybe they do realise. OK – enough soppy stuff – I’m dry!!!

Back home for dinner and rest – make an early start on the blog.  Have a conference call with the Dunedin Neuro  specialist I see, who confirms the treatment plan is good and I’m under the best possible care in Christchurch Oncology.  So it helps set my mind at ease.

Time out to catch up on a few things that need to be sorted then M&D time and bed at a reasonable hour – like before 11pm tonight is planned as I am so frigging tired!!!

Kia Kaha

Nuke day = time minus 5 sleeps.

Well where to start – I know easy – Sh!te! – Run with this for today as a theme in a way not that is all that bad.  It all started with a semi cr@ppy sleep – though feel rested and didn’t really wake properly until about 5:45-6:15am ish, then sort of dozed. Decided to go into the gym for a bit.  Made the pit stop to empty the overnight liquid intake and noticed the loo tide rise when it flushed.  This can only mean one thing for our house (as we have about a 400 litre separate septic holding tank in the backyard due to a wayward dispute when the house was built & the neighbor over the fence not wanting the sewer line connected to his main).  The result of all this means that our sewer is pumped bout 120 metres up the driveway, uphill – yep we push it uphill to Hoon Hay Road. rather than it going 15 metres to the street behind us – downhill.  A rising tide therefore means that the pump has tripped due to an obstruction – instant outburst of language not befitting a family neighbourhoods – it’s OK  I’ll blame I on the tumors bro. Really – it is 6:20am, freezing cold & the bloody pump has given up. Arm myself with a screwdriver , to reset the trip – fingers crossed it will just reset this time.  Lift the lid – yep full to the gunwales! Grumble, moan. Work on the tripping setup, bingo – manage to get it re-running again, but know in the back of my mind it is only probably temporary.  Get the hose to break down the top layer that forms – don’t worry – not going into the details – it isn’t nice.  Time for a shower as to late for gym and Jono is picking me up early today as he is heading to Timaru.

Get to work and right leg /foot is in a hell of a pain so limping around –  seems that the walk from town yesterday did more harm than good – must remember that. The day at work pans out fairly well in all. Was it me or did it today just seem to slowly tick by in silence for other too? Nothing happened quick today at all.  Get a reminder from Sue that I have my follow-up Physio appointment at 2pm.  In away it is good timing as not really coping with pain & tiredness today. Looking forward to Physio as can show off all the work I have done with Wilson and how is now my letf hand/arm, again.  Arrive at 1:50pm – finally  get seen at 2:30 – ah love hospital time – not!  He wants to do a full assessment – sorry dude, you need to be early to do that, I have places to be like over the hallway at the Speech Therapist – that still hasn’t after 3 weeks been in touch about the difficulty I have eating.  Anyway Physio – go over all the real stuff I struggled with and he is more than suitably impressed!  Yay for me – I fought Wilson and won – he is mine!  We then discuss the leg pain and that when I’m tired I drag my left leg /foot, and as such I have over done it with my right leg, hence the pain above I was describing.  Because of this I have now been issued with a walking stick to assist when I am tired,etc. So watch out I’m now armed and are like House M.D – maybe.  So another – cr@p moment for my health in a way as it is a sign to people that I am changing – slowly.  Still if I need it then I will use it.

Home then – and get in the mail the biggest cr@p moment – though this shouldn’t have hit me like it did – but for some reason it does.  The letter is 3 pages long from the Registrar of Oncology, that summarises my health through life, that of my sisters and other bits they know, what’s happened to me with the tumors, the plan of treatment and then the final bit that it is a terminal disease, there is no cure for it and they are working to extend life and balance with quality.  Why would this seem to be so hard-hitting given we’ve known this since 30 March?  It is the first time I have seen my name serial number, etc, on a piece of paper with it spelt out like that – in simple black & white words.  It makes it very real, as this is what the Life Insurance company will be wanting to see.   Still can’t dwell on it, as I do actually know this and they are just written words.

Lachie has footy practice so decide I have enough energy to go with him to help and it is all more time with the boys at the end of the day.  Rug up warm as it is bloody freezing.  Have a fun time helping Lachies team that Craig coaches.

Home then to find that the bottom door lock has twisted so won’t unlock – ahhh really another cr@p moment!!!  This time a bit of quick thinking, an old magazine from the recycling bin and some fiddling then the keys get s it all sorted and we’re the house again.  Don’t ask how I know how to do these things – as there is just somethings that will not get answered!

Last cr@p moment of the day is about to happen as the pump that started the day blocks properly – ahhh!!! This is the messy bit I have to don the rubber gloves, lift the pump dismantle the cover and remove the obstruction from the pump.  Wonder how many awesome germs I am exposing myself too.  Oh well no time to smell the roses and think to deep – Lachie needs a shower, it is freezing and I hate the smell of this sh!te!!  Just wish people would follow the simple request not to flush certain personal items – or just get a bigger badass pump to send it uphill without jamming!. 

Basically folks that summarises what could be a cr@ppy sort of day in a complete meaning.  I am not going to do gain what happened last night where I signed off then waiting for it to load dozed off for about 45 or so mins – so that’s why the delay with lats nights blog loading.  And I have just nodded off 3 times doing his – I am soon tired – physically and mentally at the moment.

M&D time early today folks – as trying to shake the pains, and you never know what sort of cr@ppy day can really home in on you.

Kia kaha

Time minus 7 days till the head on war with these unwanted guests starts with a full on barrage of Radiation and Chemo together – bring it on.

Well today folks started for 2 how at 3am – with the large tumor getting deep and uncomfortable and deciding to wake me for a midnight snack of painkillers.  I give into its request – begrudgingly feed it but more probably cause my right hand /wrist is throbbing like bastard! Seems footy injury was maybe a little more than I thought.  Decide to listen to what the big tumor (ok people – time to name these guys as I’m sick of the word tumor – give me some ideas of names – remember there is 1 x 3cm and 2 cuzzies 1.2cm nearby – actually just thought they could be the bros – as in “tat tu bro – no that 2 bro no that 3 bro” – oh well I tried! ) is processing.  Today we are deep and meaningful on people – you folk out there reading this and how you feel about what i going on with these things.  In the course of a day i meet lots of people – most know what’s happening so all cool.  Some have heard a bit of what’s happening – come folks blog up! And others just don’t /can’t talk to me about what’s happening. It is interesting from my perspective – in that you can tell those that want to know all the facts (sorry folks – things like exact life expectancy is in hands beyond those of this world – docs are not gamblers usually and the odds when the end number no matter the maths is 0 – is well 0) so it is down to me you see how much mongrel I can put into the fight that will determine my time.  But I am very much here and now and will be blogging this for a while to come  – so bookmark i now if you haven’t this is going to be like a war & peace novel if i have my way.  Sorry back to people – yep there are those that want to know what’s going on but when then you tell them yo can see them processing it going – yep I know what you’re saying but I don’t like it so I’m going to selectively choose what I want to take in, then there is the head in the sand folk who then go so if operate  – hang on I just said can’t operate – instant paralysis, possible death (well we don’t want to really push our luck when you’re already walking the ragged cliff of life at 50 in 7.2 billion per yea odds that a doc isn’t going  to have a twitchy finger that day!)  Plus no surgeon will even look at the case.  Back to story again – I just said can’t operate, just Chemo & Radiation – so they are going to tun me into Toxic Tony!  I’ll be able to heat meals with my radioactive head from 50 metres – poison cockroaches with my breath. Some people go, so if they do nothing, then what will happen – ah – hello – spot whose got growth space in their grey matter   – What I am trying to get at through all this waffle is if you see me a want to talk – then please talk.  I am well known as a talker apparently – shoosh in the cheap seats!! I am emotionally calm, happy to share anything I have learnt on this journey, including symptoms that we have now matched up to what was happening earlier on. Any advice I could give to others whom may have someone who has cancer too and is finding it hard to deal with.  If you need or want to cry on my shoulder then do as i helps both of us.  While this will end with me one day – it will, live with all of you one day.

Right that’s enough of the deep stuff – watch out for more as it’s lurking in “tat’3 bro!”  Up again at 6:20 ish – into gym for a session – bloody hurting already – but bugger it!  Rush, rush as time has slowed again – maybe i need to start actually taking the extra hours when i get up at 5m to get ready. Jono picks up Jacob & I and off to school & work we go.

Aaron – IT Boss from Wellington is down, great to see you Aaron – off to the cafe for a Coffee and a catchup.  Good to explain things face to face.  It is also a game changer for your career btw!  Back into some work – oh and some eating – I try o resist – but it is futile the grip of the steroid stomach starts its wave of destruction across the food I’ve brought in for lunch! dammit!!!  Then Cath reminds me that it is portacot KFC day (we had decided to have KFC one day last week).  Aaron is in on the idea too – so drive us to get it and best of all – pays – yay!!!

Off the to th red zone to check out where the desk will be on the 5th floor. Also we show Aaron around.  Get dropped outside the Art Gallery and about to summon my ride but decide that – it is warm, I feel like waking and I’m in pain from head to toe (including the right hand that is swollen badly for some reason so I’ll walk home – its only about 5.5km’s. I don’t know how many times I nearly made the call for rescuing – but managed to push through the pain – yay can still do it if need be. Sorry a little psychological test there.

Get home 50 mins later –  Feel completely stuffed, in pain but good otherwise.  Cook wraps for tea.  Everyone is looking as stuffed as I much as I am. Early night for all – except old blog central here whose random 2 finger typing is very slow

So there we have the day in a doggy bag or is that a bloggy bag- haha – you crack me up tat 2 bro – nope tat1 bo

Kia Kaha

Well here we are – typical last minute Edmonds – leave the blogs for a day and you get behind. I know news has to be fresh and now – I work in Media remember.

Wake at 5am – when i say wake- not awake gently and go hello world – more right brain on – GO! It is just processing so much – well stuff!! Eyes are wet so obviously I either a) got maced in the night b) I poured water in them when I was asleep for an unknown reason or c) random tears have filled my dreams and buggered if i know what/why – that is the most frustrating thing of all. – not know why you cry in your sleep.  OK quick roll call of body to check it’s not pain related – head – normal, legs achy but normal Sunday feel – right wrist – ouch – but good ouch pain – deep tissue injury, not broken of cracked – can fix that!  Must be due to dreaming of something deep.  Oh well – awake so go downstairs to do a bit of research on Chemo drug as tat is the biggest thing on my need to know more of now.

Great in depth reading – it is quite amazing what these drugs do to you – yes they’re toxic as hell but they mutilate you’re whole DNA structure which causes the Tumors to react as they can’t keep growing with different DNA blocks – hence also why your immune system goes to hell too.  Fascinating reading too – says a recommend dose would be 6 weeks with a lower dose than I’m getting, with Radiation, then a month off, then 4 x 28 day cycles of the drug again – great I’m getting the first bit except high dose straight away, then 1 month off then 6 months straight of chemo!  This is going to be some real fun!!!  Had enough of digesting all this info. MIght go back to bed as can’ hit gym cause it will wake other in the house.  Lay there thinking of the week ahead – as 8 days now till Treatment day starts – it is 8 weeks since they found them (5 weeks since we found out they’re terminal).  I hate waiting but understand why, and this doesn’t help.  Have Aaron here Monday / Tuesday, then my neurologist appointment on Wed night. Possibly a potacom and colleagues outing to Foodsing on Thursday, boys footy on Saturday – so yes I am bookmarking life at the moment as I need to o I can get up to 7 May!  Doze off for about an hour – again – yay more rest.

Up then into gym – bloody wrist is hurting still! Need some weights – legs and cardio got a workout yesterday. Jane & John head off to see John’s relies, we’re going to visit Nick & Anna 7 catch up quickly.  Nevil & Rose, an everyone meeting back here for  a mass grazing session before flights depart and car leave for Northern vineyards.  Guess that’s a hint then to get my butt into the shower instead of working out – no chance – still manage to get in 30 mins in the gym.  Day has turned into a warm sunny stunner – what is with this awesome weather – and they reckon it’s going to turn nasty!

Nick looking remarkably good considering they had the roof shout for their house extensions last night – good effort!  Back to home – lunch I delicious (notice that i am oddly starting to eat more vegetables/salad WTF!!) – If this is tumor induced then it is the cruelest trick ever!

Nevil & rose pack Jane & John into car and whisk them to the airport before they continue on to Renwick. Sue, Hannah & I head off to the Re:StTart mall in Cashel Street for a look-see round – have been there before but never really take a lot of notice of some of the shops. Grab a coffee and admire the demo skyline – nowhere else in the world can boast this view!!

Back home then for dinner before Hannah leaves for Pukekohe.  Try to keep Hannah as a Maths tutor for Jacob – patients of a Saint! If I try to do the maths with him it usually ends in Jacob or I in tears!

Boys to be before 7pm – Lachlan sets a new awake to sleep record of about 2 mins – he was so shattered he bearly could stand straight.  Jacob in bed early too – though try to scare the tumors out of me by sneaking downstairs an hour later and grabbing me – really I don’t need a heart issue as well!! 

That’s about it folks – I am stuffed and was having an early night – but it is now 10:40! Just had M&D time so off to bed.  Sleep well all – till tomorrow!

Kia Kaha.

Well hello there – simple way to summarise how Saturday is going to be – a day of 2 contrasting halves – emotional – funeral in morning; physically emotional – last competitive game of footy in arvo.

Yay – no drugs (bar those I need worked) I slept through till mid 6-6:30ish.  And woke feeling like I had my brain shutdown thinking on me for a bit.  Trouble is it doesn’t take long to get into gear and start running through everything that has to happen today, and will I get it right?

House is alive with people – Jane, John, and Hannah are staying, so there is a lovely hum to the place not the pre-match Saturday barking (yes usually by me)  at the boys. Lachie is playing this morning before the funeral, so only one to feed up. Jacob’s game is at the same as the funeral so a no go. It is like a military  parade – everything is checked, double checked, – mainly by me as I seem to have had my head go into vapour land between thinking of speech and game – ahh!!!

Dad is my driver for the morning today – so we lead the way to the funeral service. Keep reminding him that we don’t need to rush and that John is driving behind us so slow it down – comment is shot me – he’s from Auckland so should drive fast anyway.  Someone please clarify that as I thought in Auckland the average travel speed was slower than the Christchurch rebuild!

The funeral was a wonderful testament and celebration of a beautiful 102 year old woman that gave so much to life.  The sign of how people inherited from been around Daisy was evident within the hearts and on the faces of all those that left the chapel yesterday.  Take your rest now, you have truly earnt it. Jacob read a pom which he did perfectly – Daisy would have been proud. Needless to say, I will not be saying anymore of the funeral.

Rochelle presented me with my new headgear for this afternoons match – it is a compulsory requirement for me to be able to play today. Then its express Dad delivery to Halswell to watch the Halswell Pinkies lads get their heads shaved! Fantastic effort by all the boys – nice fresh shiny domes to dazzle the opposition.  Also plenty of sunblock is spread around Newby baldies   Love the adventurous custom cuts that – Mouse – Mohawk  – Garth – Mohican – Fridge – Bell hop tuff.

Getting kitted up for the first (of the season) and last ever competitive match – this is very really odd!  I have some mixed emotions on this – am I really doing this – am I fit enough to give all I can today to be part of the team today.  OMG – I am in reality mode – I am questioning myself!  Yes I am  ready – yes you have already done this in your head you mug – you are about to face 7 1/2 months of controlled poisoning that the docs have said are going to smack your ass to hell – the tumors and I have agreed that this is the swan song – you’re ready.  We then get the new pink socks to wear too – really gents are you not wishing that I was called another nickname like Bluey or something

Catch up quickly with Larkin – awesome Irish gent that used to play at Halswell with us, and explain what’s happening with me and the game.  I had spoken to him at the Canterbury United game about 2 weeks before they found my mates – unfortunately Larkin – it took a bit to remember meeting you  then – this is another pocket of memory gone – ok though as i though about it and could recall some things.  Sorry Larkin if I was a little vague.

Game time – now what do you do with this round white thing again? Weird playing footy with a crash helmet on – makes you a lovely target too – chip it over the short bald guy with th headgear – he can’t header it – (please stop the comments from those that have played with saying  – but that was normal anyway)!   Give i my all – feeling great – last about 35 mins – then the left lung decides that doing the air to O2 conversion is overrated (aka breathing) – sub off for breather. Back on in second half – game going well – last chance to see it out to the end.  Feel stuffed but good – fantastic!  I will really miss this!  Oh you soppy bugger – battle hard enough for the next 7 1/2 months then there is next season! – Unfortunately – with what I’m coming up against folks – it is a no.  I will still practice when I can but as far as committing myself to a competitive game.  So simply put I have surrendered my first passion to these bloody things!! That’s it – no more!!  Oh well a 2-2 draw is a fair way to roll up nearly 40 years of footy.  I’m feeling happy and strangely not sad like I thought I would.  To the Halswell Pinkies lads – my hats off – thank you for an awesome last game – shaved heads, pink socks and all the support you are giving me.  Without a doubt  – I am beyond words.

Up to the clubroom bar meat pack to be won – 3 awesome pork chops – yum! Shout the boys from Pinkies – well earnt drinks.

Off to Pam & Karls to catch up with family after funeral.  Have dinner and quiet catchup with family.  Nice to feel comfort and supported calm through everyone, as the past few days of funeral arrangements, people logistics, and coordinated planning on top of the emotional toll has put a lot of load on to everyone. 

Home then to get 2 tired wee man to bed – it has been a huge day for them too.  Also a chance to just kick back and goss about – crap!  Off to bed then about 12:30am – physically and mentally taxed to the limit!  Oh – and have picked up an injury from footy it seems – right wrist very, very sore!  Oh no – Wilson 2!!!!

M&D time – bed!

Kia Kaha

Hey hey it’s Friday – thank bloody goodness!!!  It has been a very long emotionally, physical week.

Must have been absolutely stuffed from Thursday as only drugs last night were the anti seizure ones – which I have to take regardless, I slept until about 6am – Yay – new record sleep in as such – as I slept all the way through the night. Thought about the gym, then though of self-preservation for dSaturday (see below). May as well start the day – iron Jacob a shirt & short for school (bout time he did it himself slack bum)!  Then install more RAM in hom laptop, an give it  quick flick over of drivers, an a couple of tweaks – all good running heaps better.

Need a cuppa tea, & a haircut (yep no hair still needs to be trimmed – well before I become a completely hairless headless). Why does time seem to slow down on me yep I am moving quickly still (or have I just really slowed so much that I don’t realise it?).  My driver is here & running late again.

Off to PortaCare at Logistics – still it is Friday, so brekky at Cafe Raeward as usual – scrambled eggs, extra, extra bacon today – its raining need comfort food – honest & green tea.  Plus a backup food supply of 2 cheese scones for lunch – I know – I’m just piggy at the moment – sorry!

Slow start to the day –  lots going on with the Southland site printing – which I’m trying to keep up with as my old turf – hell – way to blow my mind guys – I can’t cope with all the emails as I’m still trying to process things. Bugger – these tumors have stripped some of my memory   If I’ve got Wilson back then I’ve now got another challenge – to not loose my bloody memory. Doesn’t sound like a big thing – wrong it’s huge!  I have always happily filed useless crap away and recall many things.  Have a moment to dwell on it.  Need to work on this though as can’t  have memories lost.

Off for another quick trip to the CBD – then back to work as Dad picking me up to pass to the next career in the chain (I am to be under 24 supervision at all times – in case you wonder why all the mention of people of being with all the time – and I mention of celebrating getting time alone).  Jane – sister-in-law & John her partner are here from Auckland and collect me from Dad’s and Jacob from school then home to meet Sue and Lachlan then we are off to visit Nana one last time and say our personal good byes. We meet Jenny & her son Adam at the Funeral home (still don’t know why they call it a funeral home – you’re not there to stay or sleep). 

Nana is beautiful, and at peace.  The undertakers have done a great job.  A bit of black humour is shared about the place, etc. Got to have a laugh about somethings else you’d rock in a corner!  One last kiss & goodbye till? Yep – it hit me – mortal moment! Jacob hugs me & says it’s OK Dad – He & Lachie are is so in tune with me at the moment – it makes me realise how real it is for them too. Family hug time.

Off to West Melton – Pam & Karl’s for dinner and a catch up with Nevil, Rose , Pam, Karl, – they all look as drained emotionally as I feel – and I am outside this. Helen (Zoe’s daughter & Stephen (her partner) arrive too – great to have a catch up with all and dinner.

Head home then as don’t want too late a night – Lachie has a footy game before the funeral, and – da, dah, dah – I am playing my last competitive game of footy tomorrow afternoon – yes last ever! Honest – actually reality it has dawned on me about this situation and I may be  able to one day keep practicing the odd Wed but no more getting my head in the way of chicken winged attackers or any other object that does harm to the head in forced blunt contact.  I am also playing as the guys in the Halswell Pinkies team are all shaving their heads in support of me tomorrow – so a humbling moment.

Decide to be a rebel and take the car 600 metres up the road to get fuel – to save stress in the morning before the funeral. Cleverly decide to put the car the the car wash at the same time – well I thought was clever until the wash cycle finished so I thought I’ll flick out the wing mirrors while the wash unit goes back to start the drier phase – doh! The bloody polish starts spraying! Ah – very wet inside the car all over me – bugger bugger!  You muppet! (common fault here – I thought!)   So clean car in and out – really.  Come home to display shiny car, clothes, head and car interior!  And to find that Nana’s Belgium Biscuit recipe has been broken out for one memorial batch to be baked by Sue and Jane.

Time to blog, practice memories reading for funeral tomorrow – and get footy gear out.  I might need more time yet – M&D time coming I think  – well do I go with the pain killers – head is hurting as i have dropped 1 steroid a day and banged my head 3 times today already – or do I wait and see if I sleep or wake in pain than pain-killer it. Hell I remember I used to have a Milo then bed! Not decide if my drug mix was going to produce a hyper sleep or a deep one – oh somber normality whence will you return from you’re retirement?

M&D time folks – till the morrow.  Take care – have a fantastic day.

Kia Kaha