3 Too Many

Well starting it early today as it is tiring me out waiting till 9 at night to 1 finger type about my day.

Bad sleep night – not sure why but I’ve resigned to not having a steady sleep pattern anymore.  Head was hurting a bit too, but decided that I’m going to suck it up a bit & minimise the drug input (pain killers, sleeping tablets – non essentials anyway) as over the next few months I am going to be taking in so much poison with Chemo, etc, that I may as well take the chance to try to be normal for a bit. (no comments about my normality either! ) Don’t panic – not going alternative just aware of how many drugs esp. pain killers I’ve taken in, plus while sleeping tabs work – I wake up slow and  tired & hate that.

As promised the Easter Egg got wiped off  (well half anyway) in the gym this morning.  Felt great burning it off so happy. 

My portacareers and I are taking part in the Global Corporate Challenge which The Press is supporting  – starting on May 24, the GCC is a 16 week virtual walking journey around the world. whereby a team of 7 attempt to cover 10k steps per day in total. Details here – http://www.gettheworldmoving.com/  You may wonder why I would want to be involved esp. when I’ll be in the middle of Radiation & Chemo – it will give me something to aim for & get me on my feet  for each day and as it is a team event it is in my nature to not want to let the team down. Also I can convert km’s from the spin bike to steps, & I have a stepper as well to mix it up – so house bound activities.  I know madness but again – the way I work in case you don’t realise it.

Had a Nice visit from Alex Van der Klip, a good friend who is in town on business after moving to the Tron.  Haven’t caught up in a while so nice to see him.

We’ve been out for dinner with Wendy & Greg tonight – Indian – fun eating it without wearing it – Random left hand was not allowed to be involved in the eating part – well not too much anyway.  Lots of rich Indian food – oh well another reason to workout in the gym tomorrow morning.

Radiation Specialist appointment tomorrow morning then back to Logistics for a catch up with Nigel our IT Top Man for Fairfax NZ.   Have a few questions for the Radiation guy & trying to think of more – got to hit them up while they’re there.  Will record this conversation with him too, like I did Fridays so have it to playback in case of miss hearing things, as lots to take on board sometimes.

Then its back to Logistics (where our Portacom temporary offices are setup for work since the quakes for those whom don’t know or are out of CHCH – hence why you may have seen me mention Portacot & PortaCare) for a catch up with Nigel our IT Top Man for Fairfax Media NZ.

Thinking of ironing a shirt soon – maybe scorching the left hand a bit – actually it has been on fairly good behaviour today so maybe not – I’ll let it have a reprieve – this time

Then maybe bed to try to get some sleep finally – undrugged except for the standard must take bedtime ones.  As  starting to fade now.

Kia Kaha, All

Well you’ll be pleased to know that there is no philosophical waffle to start today’s ramble.

Had a good day all round – apart from a sore head again this morning which is a feeble excuse for skipping the gym really! Ok I promise I’ll get in there in the morning – considering I’ve just scoffed down a whole white choc easter egg – Doh! It wasn’t me – it’s the Steroids! – Honest they doubled them again today to try to get the head pain eased & to see if I can get the use of my left hand back.  The good news is of so far tonight It seems to be slowly on the improve – right hand fingers crossed it continues;-)

Work was fantastic today – my fantastically wonderful friendly minders aka work colleagues in Portacare cabin 2 gave me a present of a photo album to store memories in – I managed to hold back the tears – but very very touched by the idea.  Guess I’m going to have to suck up my biggest dislike & get my photo taken – ahh really do I have too??

Also the battle with the Radiation team continued not sure if mentioned it but treatment start date is set to be Monday 7 May – another 2 very long weeks on from now. Meaning it will be 9 weeks then from the CT scan & if these unwanted mates are 2-3 months old that is a hell of as long time!!  The case was pleaded valiantly by Sue tears & all with them about the time & getting going earlier as time is not is not on my side. We will see what Wednesdays appointment with them brings.   I have an appt with the hospital Physio on Thurs arvo too.

Sent details of my case to a Neuro specialist recommended in America & also to a research specialist there that has done research into the tumor type I have so hope to hear something – even if it is so they have another name on the rarity file.

Found out that our top IT boss man will be in town on Wednesday so will be nice to catch up with him in person rather than electronically.

Had a lovely visit tonight from Tony & Jo Knudsen & family.  Love the care package – thanks heaps guys

Heading to bed soon as busy day & busy week coming up – oh & got the gym in the morning to burn off an easter egg or 2 now – damn steroids (not the muscle-building ones unfortunately more the waist building sort) –  bloody annoying as I had worked hard to loose 11.5Kgs since beginning Jan till beginning March and be as fit as possible for this footy season – Murphies Law.  Must will power now really getting tested!! Must not eat all food in house, must workout evenmore, must deal with head isuues, must accept can’t drink & drive – not in that order – is there anything left??? Yep forgot – Must stay alive along as I can – thats the big one – the others are a breeze really but they will also help the last one easier.

Milo & drugs (or MaD time as I call it) now.

Till tomorrow all

Kia Kaha. 

As it’s late & I’ve just spent an hour answering comments – who knew this was such a busy job please keep them coming though as love to hear from you all.

Managed a sleep in of sorts today the philosophical thinking kicked in briefly at 2:30am so on a new twist I’ve decided to utilise the memory upgrade I have acquired & stored these mid sleep thoughts to storage in mass 3 (aka the big bugger).   Lets see if it works now as I try to recall some of it.

–  nope – no waffle today sorry – guess I’ll have to practice that a bit more!

– this does though raise one thing I’m struggling with though – I am used to dealing with injuries through visual means – a cast – stitches, a bruise or a lump.  something I can see or touch & others can see too that explains odd behaviour. With this I can’t see it I can’t touch it, I can’t press on it to make it hurt so I feel as though I’m a bit of a fraud  going to hospital & all.  That also explains why the picture of the tumors are on the front page – I then see them everytime I login & often look at them to make sure they are not someone elses.

– Yes I have had a hole drilled in my head & 8 staples to close it – but for me it is just another scar in my collection of my life. it has healed well and doesn’t really hurt now apart from when you press in a particular place I know sucker for punishment.  I have been blessed with  high pain tolerance ( played footy 2 weeks after my appendix out played with broken bones in my feet, torn ligaments & the likes – good reason my ACC file is so big) – which I guess will be tested a lot in coming weeks as (I’m allergic to strong pain killers like morphine).   But the pain is good for making it real and means I can focus on making the pain better or in this case my Brain stop growing these things.

I made mention of the book I’m reading  but there is a line in it that I can really connect with & understand as it is when Lance has just found out he has brain tumors too that I want to share – For most of my life I had operated under a simple schematic of winning or losing, but cancer was teaching me a tolerance for ambiguities.  I was coming to understand that the disease doesn’t  discriminate or listen to the odds – it will decimate a strong person with a wonderful attitude, while it somehow miraculously spares the weaker person who is resigned to failure.

I was asked today by a person whom has had cancer if I’ve been through the why me phase?  I said yes and the simple answer is why not me? If not me then who else would it be? I know I can be cold & heartless but in all logical reasoning who would I wish this upon.  This now a part of what makes me who I am.

enough deep & meaning full now.

Full on day – Church this morning – got to stay on the good side as I don’t like the heat   & like the idea of cracking a few jokes with Saint Peter at the pearly gates.  Probably heard them all anyway.

Then packed Lachie off to Invers on his first solo flight. to spend a week with the lovely Tuckey family – and have 3 days at the footy academy in Southland unto learn a few skills to bring back to the Cantabs.

Then mowed the lawn as Jacob was to Busy practicing his teenage position of laying on the couch.  I resisted the urge to feed the rogue left hand to the mower as it really has been unhelpful today.

Sprayed weeds – kept dropping the weed sprayer – thank goodness they bounce.

Put a magnet on a cupboard door to stop the quakes from evicting contents – not fun with left hand helping – try holding a screw about 30 times and randomly dropping it just when you’ve just got it in the right place!

Oh and repaired a quake pot hole in the driveway – so throughly tuckered now! 

Talking of tuckered – cooked the steak meat raffle I won yesterday for tea too
 so a busy time for me today.

Anyhow, drugs, bed calling now, as work tomorrow – got to have some routine still.

Take care out there.

Well who would’ve thought that Saturdays start at 1:20am with a head full of philosophical thinking about this whole saga?  Things like:-

– if I was 1 of 50 in the world to get it then I will be first of 50 to survive the longest.

– if the main battle has is about to begin then I guess really my first skirmish is underway with the tumor affecting my left hand & leg – I am having a daily fight with controlling these properly – importantly I’m slowly winning.

– Why am I finding it easy to talk about it all? – I guess it is cause I have had time to run the different scenarios through my head & there is one defining morning that I had where you could say I faced the reality of my own mortality.   We all share this event in common but we don’t know how it will come about & hope it is as peaceful as going to sleep one night.

– Cancer let alone Brain tumors are never words that I thought of nor wanted to hear. So why am I now dealing with this & why so rare a cancer to have? What is it that I am to give back for been given it?  Or am I a firm believer in things happen for a reason and there are lessons we all learn from these happenings? Or is it just fate that has dictated this?  I still haven’t thought this through properly?  But will.

Dozed back to sleep thankfully until 5am went back to sleep then till 8am best of all didn’t wake with head pain yay for steroids!! Up & into Gym for a session  Went really well so happy  

First visit of the day from Sean – Jacobs schoolmate Callum’s Dad – sorry Sean if I shocked you with the news – I’ve got to learn to be more tactful really.  As I’ve said previously – I’m still learning some of this myself.

Then got a visit from my younger sister Sarah this morning with my nephew Jayden & Mother.  It was Fantastic to see them all especially Sarah as it has been 2 long years since we saw each other last.

Off to Halswell to watch my old team the newly named Halswell Pinkies  play Western Whom won the Division last year so a big match first up.  The lads did us proud and went 1- nil up late in the first half thanks  to a beautifully struck left foot curling shot by Fridge – still reckon they opposition were dazzled by the bright orange boots though ;-). Unfortunately Western equalised with about 10 to go with a shot deflected off Mouses right cheek (and not the facial one). So a 1 all draw & 1 point to start the season.

Managed to hang down the club until about 6:30 before tiredness kicked in. Oh and the guilt of starting the season by winning a meat pack in the raffle – yeah right!.  Was great to catch up with so many people there today. 

Quiet evening – Crusaders win – fantastic!! 

Got to take my night drugs soon so Milo , drugs & bed and a read of the Lance Armstrong book – It’s not about the Bike – recipe for a good sleep (esp. the reading as usually out cold in 2 pages) The sleep will be to at least  probably 2am anyway.

Night folks.

Kia kaha

Sorry learning to drive this Blog thing still _ if you want to read from the beginning then click the 3 too many link at the top of this page. I know sad an IT bod is trying to figure it out.

Sorry folks missed Thursday’s update,as was busy, tired & emotions were a bit raw so probably best not to spill all out on here – if you understand my meaning.  While we’re coping well it doesn’t mean I understand why for random reasons I wake in tears – not sure if it cause you’re I’m in pain or my mind is in what I call dark places. A comment I passed about all this is that it is much akin to childbirth – there is no instruction manual on how to handle it so learning the ropes as we go.

Had a friend Sarah from Invers stop by to say Hello Thurs arvo. Which was nice

Friday 13 April – Chemo Appointment day Also useless trivia for the day  did you know there is 3 Friday 13th’s this year & the spooky bit is they’re all exactly 13 weeks apart.

Sorry for the late update about how the appointment went this morning – head has been giving me hell today.  Had a big Nana nap this arvo too.

Met with the Chemotherapy Doctor to go over the plan of treatment for me  and this is the plan of attack pending agreement by the Radiation Doctor on Wednesday morning.

I will be getting 30 doses of Radiation – once a day for five days over 6 weeks (weekends off) while also getting the chemotherapy drug temozolomide (this drug is available now thanks to a guy Dave whom had a Tumor as well – different type& fought Pharmac to get it funded – unfortunately he passed over and never received it himself then read his story here http://www.headstart.org.nz/Site/Daves_Story.aspx) I will be getting a 1 month break to stabilise before starting on a 6 month course of the same Chemo drug again.

This is a very aggressive treatment plan but they have said it needs to be. The encouraging thing is that it goes for 9 months nearly.

I am back on steroids again to try to ease the random left hand & its mate the random leg which is starting to give way on me.I say Random as they don’t quite do what they are meant too even when I know my brain is telling them to do it.  They have mentioned that I might need a walking stick if the leg takes a while to come back to normal.

I will have another MRI probably in the next week and a start date hopefully for the following week fingers crossed.

Heading to footy tomorrow to watch the lads deal to the Western -ahh gents (moderated tone in case sensitive ears are reading it. Oh & to win the meat raffles at the club

Have a great weekend.  Go the Hawks & Thistle (for the lads in Invers reading this)& Crusaders

This is a blog to keep you up to date about the going ons with my battle against my 3 unwanted guests in my brain.

I think that I should probably give you a bit of a timeline as to how fast things have been happening around this all:-

I went to Dunedin at the beginning of March for the standard Botox migraine treatment.  That night I had a headache which is not uncommon (though I had been having them constantly for the past 3-5 weeks – again not out of the ordinary for me, after all it is me and you may have gathered I’m nothing but text-book). It ended in a complete meltdown migraine (vomiting) but was fine in the morning, though thought I was slurring my words & hadn’t been with the students all night – so not normal.  Went to Botox clinic where Neuro and I discussed things he decided that even though not related he may try a bit more in a slightly different area of the left temple/ear area (I get about 6 times the amount of Botox they give for cosmetic surgery).  All good, drove home once cleared too, but didn’t quite feel right.

March 10 – 11 – noticed slurring and face drooping a bit on the left side, so thinking the Botox has hit something on the left side where it was placed.

March 12 – 14 – Sue & work colleagues noticed that droop and speech getting worse explained maybe by Botox but decided doc visit needed.  Saw Doctor who was concerned it may be a stroke or TIA so called my Neuro in Dunedin (who is out of country til 26 March).  Told to order urgent CT scan anyway as 90% sure not Botox.

March 15 – called at 3:10 told to be in for CT at 3:45 – Take 2 scans which seemed odd – 1 with contrast as they wanted to be sure they could see everything – is what I think they were politely saying we can almost see something – my brain maybe – haha! Told they have found 1 definite and maybe another smaller mass similar to an abscess on right side of the brain (great they found that too).  In a way this was pleasing as it meant that it wasn’t Botox related (and a wait of several weeks for it to wear off), but it was something conclusive to work on (hope this makes sense in a strange way).  So I’m off to hospital for and urgent MRI.  Overnight I stay in the fab Ward 28.

March 16 – first on MRI list in morning – do get concerns when 5 people are looking at the screen, including 2 surgeons.  No comments when released except that a specialist will report the findings to me later.  Late Friday surgeon comes to discuss the findings – we have gone from one large and a small mass to  1 x 3cm and 2 x 1.2cm masses unknown type, not joined and the only positive they could give was that they are fairly certain they are not tumors.  Only way to find out what they are is to biopsy – meaning they need to drill a hole in my head.  Thankfully 1 is close to the skull so not too invasive. They were trying to get me in for Mon/Tues surgery.  Discussion done about going home for weekend and then finally set free!

March 17-21 – Try to go ahead as normal – put on drugs.  Surgery confirmed as first thing Thursday morning so check in Thurs at 7:30am.

March 22 -28  – Surgery done – all good – 5 days in hospital told no answers probably until Monday.  Monday comes told probably nothing until Thursday so will get them when I get the rocking new 8 stitches out of my head – should I be concerned the surgeon said he would put in 2 and I get 8??  Won’t hold maths against him I guess!

March 29 – Staples out – ouch!!!  No answers now told to expect no news til Monday probably.

March 30 – hassle doctors about getting results told at 4:30 to be at hospital by 5pm for meeting with surgeon to go over biopsy. 5:32 – Told the results have come back with a very rare (50 cases worldwide per year reported) & aggressive form of Brain Cancer & that is what the 3 masees are (remember earlier they said they thought they weren’t tumors).  They are not operable due to location & they will be terminal.  I will be getting Radiation & Chemo therapy to try to extend life & give some quality that’s all.  They grade the tumors from 1-4 based on size & aggressiveness  and tell me that the big one is already about a 3-3.5 on the scale!  They have not given a life expectancy.  As for how long they have been growing they think 2-3 months approximately.

April 5 – We received notice of my first oncology appt for Friday 13 April at 8:30am

April 10 – Received notice of my second oncology appt with Radiation specialist for Wed 18 April at 10:45.

April 13 – Chemo Specialist appointment – goes well delivered the treatment plan pending meeting with the Radiation Specialist on Wednesday 18 April.  Plan is Radiation treatment  of 30 doses 5 days per week for 6 weeks. Chemo treatment for 6 weeks at the same time but for 42 days 7 days per week for 6 weeks. Then a 1 month break  to stabilise & take readings, then start on another 6 months of continuous Chemo.  Even the Doc said it is a very intense & aggressive plan but has to be. 

April 19 – Appointment with Physio about random left arm & leg – 2 pm

April 20 – Appointment with Radiation Preparation team for – mask, scans & alignment marks.

May 7 – First Radiation treatment Appt is for 10:50am.  Chemo will start the same day.

May 24 – mid-point Appointment with the Chemo Specialist.

June 15 – Last Day of Radiation treatment.

June 17 – Last day of first Chemo treatment in conjunction with Radiation.

June 23 – Admitted overnight to ChCh Hospital Ward 27 via ED with serve head pains.

July 9 – Appointment with Chemo specialist pre start of 2nd round of Chemo only treatment. Next course is 2 1/2 times stronger than the first round.

July 13-17 – Chemo only treatment, round 1.

July 21 – Admitted again overnight to ChCh Hospital Ward 27 via ED with serve head pains.

July 25 – Appointment with Neurosurgeon.

Aug 10-14 – Chemo only treatment, round 2

Sept 10-14 – Chemo only treatment, round 3

Oct 8-12 – Chemo only treatment, round 4

Nov 5-9 – Chemo only treatment, round 5

Dec 3-7 – Chemo only treatment, round  6 – Last treatment.

Then who knows what!