3 Too Many

“Strength does not come from physical capacity – it comes from an indomitable will.” –
Mahatma Gandhi

Today it will be very short and sweet as not in a brilliant way and been in hospital.

Woke to the usual pains, but in a heightened level  and nausea is terrible.  Drug up and it takes some edge off, but sensitive to light and are starting to dry reach so call the hospital as instructed by them yesterday.  Told to be in there by 9:30.

Get to Oncology and the usual procedure – 50 million questions (I know they need to ask them).  Then they wheel in the Vampire trolley and take bloods and put a line in.  looks like a liquid diet for Meds and lunch today.  Yep sure enough – blood out, fluids in.  Then a couple of tablets and the dessert is via IV.  One of these – I later find out,  puts you to sleep.  Thanks for the warning.  Also they have me back on the Steroids – nnnoooooo!!!  Get told I can pack up and head home about 1:30 which is great as they were saying earlier that I might be staying overnight.

Get home and go back to sleep.  Doze on and off until about 5:30 – actually probably sleep most of that time.  Feeling better compared to earlier.  And manage to eat food without any problems. Last night of Chemo for this round – fantastic – made it!!  Anyway, starting to hurt a bit again so calling it quits on the blog and going to lay down.  Catch you tomorrow.

Kia Kaha.

“I try to take one day at a time but sometimes several days attack me at once!” – Unknown

Happy Birthday Jacob!

Bloody restless sleep – I hate them.  Surely there is a better way to suffer than all this crap I seem to get added to.  Feeling lousy as too.  It is getting tougher as the days go on.  Oh well 2 more nights of it then this round is done until 8 October.  That date seems way to soon already.  Get woken by Jacob – the birthday boy – coming in looking for presents.  Lachlan comes in next so get out his goodies.  Surprised the whole of Christchurch didn’t hear his squeal when he opened the iPod – I know he is joining the Apple cult – hopefully it is the first and last Apple thing I will buy him.  Surprised he hasn’t asked for an iPhone 5 yet!  Anyway he is very excited and I’m going to do my best to help make it as fun as possible.

Get up and hobble downstairs.  Have my breakfast cocktail but no food as feeling really sickly.  Go and have a shower to see if that helps – nope.  Email work to say I won’t be there today.  Say goodbye to the family and go upstairs and lay down again.  Lay there for a bit feeling very sorry for myself.  Manage to get up and go back downstairs – this was going to be a pattern for the day – upstairs then back down.  Very restless.

Can’t manage lunch so have a glass of water and guess what – a lay down.  Wake up suddenly reaching and make a fast path to the bathroom.  Hell’s bells I’m now allergic to water!!!  Nice way to make yourself feel really lousy, empty your stomach when you are already out of energy and are flat.  Seem to have hit rock bottom and started digging further.  Need to shake the vomiting bit before tonight as I need to hold down my Chemo drugs.

Jacob gets home and we setup his iPod for him.  I think I just discovered the most expensive part of him owning a device like this – the music and the app purchases for it. Sue gets home and calls the Oncology department to talk to them about my throwing up.  If I haven’t improved, as in able to hold fluids down or are still throwing up anyway before Chemo tonight then I am to head to A&E and get checked into the hospital.  Else if I can hold down the Chemo but are no better by morning then it will be a day visit to the Hospital.  Either way it ends with me in that place!  The hospital that is.

Bit of a short and sweet blog tonight – sorry but not in a good way and need to look after my health as a priority.  Hope everyone else has had a better day than me.  Take care and stay safe.

Kia Kaha.

“Self-worth is not measured by accolades, but by being able to look in the mirror and smile.”

Oh sleep where were you! Managed to doze off about 1am to then have a very broken sleep until 5am. I am having the grip of the Chemo get a hold of me sooner this time.  I appreciate what it is doing to help me but really I seem to be paying more this time round in terms of sleeplessness, pain, nausea feeling, etc.  I’m just generally restless really.  I won’t complain too much about the nausea though as the new ‘extra’ drugs are helping to suppress it. Swear that when they do the next blood test they will not get any blood out, just a powder from all the pills I’m a taking (27 per day at the moment)   It’s going to be a lonnnngggg day.  Drag my sorry butt downstairs to get my morning fix of meds – a couple of pain killers, three anti-nausea, a stomach protector, and an anti pneumonia pill.  Who needs breakfast with that lot?  Make a cup of tea then get ready for work. Not in the most brilliant head space today – just feeling really flat, drained and lonely. It’s ok though as I’ll just get on with it.

How many of you did what I asked yesterday too?  Did you stop and put yourself mentally in the position of having a countdown timer on your life started?  Just curious as further to that little exercise I want you to now think about how do you tell people? In person? Email? Text even? Who do you tell first? Relative?  Close friends? What friends do you think will be there for you? Close ones?  Old ones? New ones? How do you reach out to people for help? Do you ask? Or just turn up and let it out? One thing I’ve noticed through my experience is that other people sometimes have a harder time dealing with the diagnosis than I do. The people who you expect to be there for you pull away, but the good bit is that new friends come out of the wings to stand beside you and offer that support you need. All that is needed some days is a simple kind word, a hug (I know, he who hates them has learnt to suck it up a bit), or an ear to listen to what is going on in your head and body, as you have become a fighter in a un-surviorable battle.  There will only be one winner but the enemy is going to as sure as hell have to fight hard to beat me.  But please try to empathise with what’s going on, as there will be the next bit of this task tomorrow.

Off to work, and a steady day in the office.  Manage to close a couple of calls and get on with data gathering for Aaron.  Even manage to have a small lunch as something of an appetite is there.  Head off then for home, and not too soon, as starting to fade physically.  The mental space hasn’t improved either bugger it.  Nutty is waiting at home when we get there, as she’s stopped by for a cuppa.  I login to work, then have a wee lay down in the sun in the bay window.  Sure enough it does its thing and I’m out like a light.  Manage to have about a 30 min nap before Jacob bursts in and wakes me up.  Don’t actually feel any better for the nap either. 

Get back into doing some work and trying to stay awake.  I think the missing sleep has found me, and is doing it’s best to take me down again.  Fight it off and manage to keep going with work.  Nearly dinner time, so med up more.

Dinner done, dishes done, boys scrubbed and ready for bed.  Sit down after dinner and doze off again! Get woken by the smell of fresh baking – not fair!  I can’t eat after 7:30 because of the Chemo. I do the blog and watch tv for a bit.  Doing the countdown again to taking the Chemo.  Really has my life now sunken into this much of a routine low that a highlight of the day is taking my Chemo.  Still feeling down a bit too.  I guess feeling lousy it is easy for the down side to be dominant.  Not really find lots to smile about.  But tomorrow will be different, in fact I have to be a happy camper, as it is Jacobs 13th Birthday, so a big milestone for him.  My goodness time has flown.  My wee man will be a snotty nosed, know it all teenager – just like his Dad – well minus the teenager bit, then again I guess there are somethings that you maybe don’t grow out of.  After all growing old is compulsory, growing up is optional!

Do M&D time and then head to bed to read a wee bit before jokingly trying to get to sleep.  Please let me rest tonight Mr Sandman!  Have a fantastic day/arvo/evening all.  Catch ya on the flip side.

Kia Kaha.

“Sometimes the smallest things take up the most room in your heart” – A.A. Milne

“Don’t die wondering” – Unknown

Restless sleep due to the Chemo but it’s OK, at least I had some sleep. Wake properly at 6:15 and contemplate life, the universe and everything in it.  Quick check of pains and aches – nothing new there, the usual suspects, head and body are doing their thing.  Jacob comes in to say Good Morning  about 6:45 and we have a chat for a bit about things.  Get up then and get ready for the day.  Down my new increased morning allotment of drugs.

Off to work, sunny but cool, with no sign of the wintery blast that is predicted.  Not feeling brilliant, but ok.  Still waiting on the drugs to kick in properly.  Have a bit to do today with work, but make steady progress.   Manage to eat lunch today too – only a small amount, but at least it is something.  Head off then about 1:30.  The cold weather is starting to look as if it is about to hit us. Get home and login to work to keep going and get another job to do as well. 

Get dinner ready and set the fire up ready to go, as I think we’ll be needing it tonight.  Do some more work while waiting for a search for missing pages completes. Then time for dinner.  Manage to eat a second time too.  Really on a roll now.  Sit down and do the blog.  Hard to get motivated again tonight.  Need to get my head in the right space for putting words to screen.  I have a lot to say but just need to get it out in the way I would like and that more importantly a way that makes sense.

I’ll give it a go anyway.  Imagine waking tomorrow and been told that you have only 12 months to live. I know this is possibly a reality for some of you or someone you know, so I apologise now if this is a bit raw.  Take a minute now to think about it.  What was the first thought that came into your head?  My children? Why me? What can I do?  How did you feel? Sad? Angry? Frustrated?  How do you react? Want to cry? Hit something? Just have a hug?  These are some of the questions that you face when it does happen to you. There is no right or wrong answer as we all have different ways of dealing with things, and different priorities.  But it is a good way to take a check on your life and helps you understand what you value most.  If you had to tell people about your life, what would you say to them?  Where do you start? Do you have a bucket list? A will?  Insurances – Life, Funeral, Income protection?  Unfortunately for some people this will happen to them tomorrow and they will start the process of valuing and prioritising their life and getting their ducks in a row.  But just if you get a chance, stop and put on these shoes and try to walk the mile.  This will give you an idea of what it is like.  You could then throw into all this the treatment and what it does to you, so while trying to deal with the situation you now have to deal with the effects of all the drugs as well. It isn’t easy by any means.

Do my Chemo routine, then back to having a Milo again so M&D time and hit the bed to read a bit before sleep – haha – time.  I’ll be having lavender sleep spray tonight and pain killers to ensure that I go out to it.  Hope all have had a brilliant day/arvo/evening.  Laters.

Kia Kaha.

“Everybody deserves somebody who makes them look forward to tomorrow.” – Unknown

“I smile and act like nothing is wrong sometimes, it’s called dealing with shit and staying strong.” – Unknown

Welcome to Chemo day 1 round 3!  Wake up at 5:45 and don’t really get back to sleep properly, but also can’t be bothered getting up either as sore.  Drag myself up about 7:15 then and of course a mad rush ensues.  Can’t stomach even my normal cup of tea or breakfast (apart from my usual myriad of pills).  Ready to head off to work in time so all good.

Over the past couple of days, I have been starting to psych myself into Chem.  I know it sounds silly, after all it is just a matter of taking a series of pills, not hard or painful.  But it is the effects of them that you need to prepare for.  To me it just doesn’t seem right to be putting yourself through this hell for the gain involved.  I am not about to stop, but in the back of your mind the little voice is saying, you realise that the punishment you are taking is not to cure or save you.  Why do this to myself then comes to mind.  Why?  Why not? I am not ready to give into this shitty sickness yet.  I have a short enough time already to live the rest of my life in so any suffering is just the price of some more time.  Every day I am reminded by many people how much they care and are concerned, which is heartwarming and also energising for the soul.  It gives me the real strength that is behind me in this fight.  I might be mentally strong, stubborn, more physically fitter than I probably should be given where I’m at but knowing that you all have my back, means that I have to give it all I can to respect your support.  Thank you for being there and the contact from you all.

Get into work and the smiling happy faces of my colleagues greet me.  Have another good day at work then head off about 1:30.  Go and get Jacob’s birthday present on the way to the meeting at the hospital with the Chemo Doctor.

Have a good meeting with the Doctors Registrar, and hells bells as if I needed more drugs – but I have 3 new ones to take as well as the Chemo and everything else!!! I am going to really start to rattle soon.  One of the new drugs is a better anti-nausea one, but I am to have along with the ones that don’t work so hopefully I get some sort of settling down happen.

Head home via the Chemist – poor bugger wondered what hit him.  Do some sorting out of my drugs box to fit in the new ones, and setup the schedule for them on the app on my phone else I am really sure to forget them.  If you have an iPhoney and need to take meds at a set time then I would recommend Medimate which was recommended to me when all this started.

Dinner time – and yes I took one of the new pills and OMG – it works!  Manage to eat 2 beef wraps – wahoo – food! I now feel like I’m going to explode.  Time now to wait until 9:30 to take my first round of drugs, then the Chemo ones at 10:30 and bed to sleep off the lovely effects – I hope it works that way.  Anyway, things to do and books to read  – this is the worse bit, the waiting, watching the clock to take the pills.  Trust all have had a fun day/arvo/evening and have managed to stay warm where ever you are.  Till tomorrow.

Kia Kaha.

“Live the life you love, and love the life you live”

Sore!  Yep yesterday has caught me up.  While my head is in a good space pretty much, my body is not quite there.  Every joint is aching and head is a bit sore too – not from too much bourbon either!  You can never have too much bourbon.  Cuppa tea and pain killers and a crumpet for breakfast – yum   The nausea seems to be on the back burner today so might have an eating small amounts day.  Need to get up and get on with the day as it will get away on us, and Dominic is coming over to visit.

Have been thinking about a discussion I had last night about hope and do I hope that there may be a miracle or that the tumours will go away.  I know and have accepted that there will be no miracle, but it doesn’t mean that I don’t have hope.  I hope that there maybe a medical discovery that could change the state of play (radiation, surgical or Chemo).  When you’re first diagnosed I guess you have a small hope that they have got it wrong.  I guess what I am trying to say is that through all things you must have hope, and with that strength, but you have to remember to stay realistic about it.  I have hoped that one day I will wake up and find out this is all a bizarre dream and it has not happened.  Unfortunately it is all very real and is happening.

Dom arrives and we have a good chat about things and a catch up too.  Good to see you again Dom.  I would write more but my memory has gone awol on me – sorry. Dom leaves and we plan the rest of the day.  A visit to the hardware shop is needed to pick up some bits for around the house. Not having a good day with body aches still – everything hurting, even just moving hurts. I really wish there was a standard list of this is what you will have go wrong with you due to treatment, tumours, and other reasons so you know where it is coming from.  I really hate days like this.  I know it is a strong word, but it is the most fitting one to use!

Get back from the wee exertion and have bacon butties for lunch.  I actually manage to eat one. Crikey, that’s 2 meals today now.  On a roll!  Do a couple of chores and take it easy as tiring quickly.  Sue and the boys go to Nick and Anna’s and I stay home.  Take the opportunity to do the blogs for Friday and Saturday – happy reading! 

The family arrive home and the boys and I have a kick around with the football on the driveway, before we have dinner – well I try too, and end up giving up on eating the food and resort to trying the Vanilla Ensure liquid meal instead – yuck, but better than Chocolate one – especially when you hold your nose   Do the dishes and then start on today’s blog. 

Watch some tv and have a soak in the bath to try to ease the pains.  Starting to get my head in the right space for starting Chemo tomorrow too.  Feeling a bit p’eed off that I haven’t had the good week prior to the next round.  Probably due to the higher dose of temozolomide (Chemo drug) I had last time.  W&D time and some more reading. To all a good day or night and happy dreams.

Kia Kaha.

“Never pass a chance to say ‘I love you’ to the people you care about, because we aren’t promised tomorrow.” – Unknown

Howdy campers. Not sure how long this ramble will be so fasten your set belts and get ready for a bit of a waffle.  A bit of a sore awakening really and head hurting too.  Still another important day ahead today so have to suck it up.  Get a cuppa tea and drugs delivered to me in bed today – nice   Catch up on the news before dragging myself out of bed.  Scot is already up and looking quite lively considering.  Not really feeling like eating much today and manage to have a crumpet – can’t overeat really as it’s not good for you

Have a bit more of a catch up with Scot.  He heads off then about midday.  As he leaves he gives me a present of a very cool book called “The Last Lecture”.  A very apt book given what I’m going through, but it also would be a good read for anyone out there.  Thanks for the kind words too Scotty, at the start of the book – had me in tears – thanks.  We say our goodbyes, I will be over to see you, Junior and the kids too some time next year.  Take care of yourselves and thank you for coming to visit and stay mate. Really appreciate it.

Sue and Wendy head off to the Dunkleys Craft show so the boys and I stay home.  I try to get on top of the body pain and go and lay down on the bed in the sun and start to read my new book.  True to form, I manage to get to page 4 before going to sleep.  Actually not sure if it’s the book or the sunshine, as it’s quite warm.  Wake about an hour later.  Need to get ready as heading out at 5pm to the footy awards dinner. 

Fish collects me about 5 and we head to the Dux Live to meet the others before walking over to the Netball Centre where the prizegiving and dinner are.  Have a couple of Bourbons – may as well get them in before starting the Chemo again on Monday when I can’t drink again.

Head then to the Netball Centre about 6:15.  Fairly good turn out.  Have a couple of beers then and they get into the Prizegiving.  I mange to get a trophy – Masters Clubman of the Year Award.  The Pinkies team also picked up the club team of the year award.  With Dutch getting the player of the year for our team – well done Dutch. Not a bad night for awards.  Dinner was very nice as was the company – thanks ladies and gents.  Fish, Craig, Dutch and I head off about 11 to the Pedal Pusher bar on Lincoln Road. Have a couple more Bourbons for the road, before getting a taxi home about 1.  Had a great, fun night – thanks everyone.

Team of the Year and Clubman of the Year.

It was nice to have a normal feeling night out like old times.  Just one more moment of regaining a part of my life – all be it a night out and did drain me a lot, but it was worth it.  I guess I’m learning to value moments like this for what they are – great moments that are a good expenditure of my time and energy.

Rightly, so there you have Saturday now too.  Will work on Sunday soon – phew!!

Kia Kaha.

“If you have good friends, no matter how much life is sucking , they can make you laugh.” ― P.C. Cast

Finally – Fridays blog is here!  It will be brief too.  Busy old-time the past couple of days, and a distinct lack of motivation really, probably because I am hurting in every conceivable place.  Also feeling crappy with nausea, though not quite as bad on Friday.  Woke feeling decidedly average really, so wasn’t as hard to drag myself out of bed.  Get ready and hit the road to work.

A quiet day, though we all had a few laughs which was good as it makes for a relaxed day really.  Not really much else to report about work otherwise.  Head off about 1:15 to home and let fatigue have its way and send me to sleep for a while.  Quiet handy actually as Scot is here from Aussie and is coming to stay for the night. 

Scotty arrives about 4 and we have a fat chat about things before Andy and the girls come over too.  A good night catching up, and having a few beers and laughs.  Roh and Sue get home about 9:30 and join in.  Starting to fade a bit about 11, and Roh, Andy and the girl’s head for home about 11:30.  I manage to hang in there until about midnight and then leave Scot and Sue to natter as I am that shattered and sore I can’t keep going.

Take my evening meds, and hit the sack.  I don’t think my head had hit the pillow and I was asleep.  Told you I was shattered.  Anyhow – I also told you that it was a short and sweet read for Friday.  Summary – in pain but happy and in a good head space too.  On to Saturday now.

Kia Kaha.

“The happiest moments my heart knows are those in which it is pouring forth its affections to a few esteemed characters.” – Thomas Jefferson

No major head pain today but a restless sleep due to the body aching and sore.  Every time I turned over it was enough to wake me.  Pain killers are not taking away the body aches unfortunately   Lay awake from about 6am taking in the magnificent view of the ceiling!  Loosing enthusiasm about getting up in the morning, which I guess is a bad thing really, as I have every reason to get up and face each day, even if it is a pain ridden one.  For I have to make each day worth living for.  There is only a limited number of them and for each bad one, there will be a good one, and there are enough bad days to come really.  Get up finally and get ready for work.

Head into the office via the Vampires Lear (the blood testing lab) as need to have levels checked to make sure that I can start the next round of Chemo.  Then walk to the office as it is already 18 degrees outside so may as well make the most of the warm weather.  Get to the office and Tim (new IT section boss) and Aaron (my teams boss) are there.  Have a chat with Tim about things. And then a group morning tea, unfortunately the nausea feeling and horrible taste in my mouth don’t really do any favours for wanting to eat anything.  I do manage a juice and at Cath’s recommendation a slice of Banana cake. Get on with the day.  Having a good day today and head off about 2:30 as wearing down. 

Walk home as it is so warm still, and it might help with the pain a bit.  You may think that’s mad, but I have found that on bad days pushing myself actually works wonders for lowering the pain level (well a bit anyway) and refreshing the mental attitude too.  It is dealing out my energy levels in little doses.  And it seems to have worked, as I feel good when I get home. But by 7pm I am starting to go down hill again really.  Jacob cooks dinner tonight  – Sushi –  but I’m not indulging in any as my stomach is not agreeing.  Damn you nausea!  Mind you it was salmon, so no lost as I hate Salmon – blah!  Actually I should try it with my taste buds as it might taste good.  Then again it is Salmon and there is no way it could taste good, even with my taste buds.  I’ll make spagetti aioli instead as that I can stomach and taste – yum.

Sit down to do blog before Mrs Browns Boys comes on – can’t miss the one decent thing on tv. Before heading to bed to read as that seems to work a treat for putting me to sleep.  That could actually explain why I don’t like reading books really, as they take so long when on a good day, I can read maybe 10 pages before the eyelids shut, some days I’ll even make it through 1 page   Anyhow, W&D time then to bed.  Have a great day/arvo/evening all.  Take care and have a fun Friday.

Kia Kaha.

“Never allow someone to be your priority while you’re just their option.” – Unknown

Ouch – head is thumping, like really thumping, to the point that if I can’t get it to settle down with the pain killers a trip to the hospital will be needed.  It has woken me several times during the night but I obviously didn’t notice how bad it had got.  Needless to say it was a difficult task to get out of bed.  Get moving all be it slowly, and with my hand over my eyes as the light is hurting my head even more.  Quite difficult to shave with the light off, esp my head! Stupid radiation has stripped (no Roh, I don’t cut my hair like this) over half the hair off my head and the Chemo is doing its best to get rid of everything else – if it can get rid of the rest of my head hair I would be happy as it means I wouldn’t have to shave it every second day.  Manage to have something to eat for breakfast – a crumpet.  Head pain is still there but the drugs are starting to slowly kick in but it is going to be a long day.

I think that today is the first time I have actually asked myself, what the hell did I do wrong to get inflicted with this cursed sickness.  Why did I get such a mean form of cancer too.  I mean, why inoperable, rare and fast growing.  There must be a lesson that I am meant to learn from all this.  Things happen for a reason, don’t they?  So what’s the reason for having these bloody things?  I can’t think at the moment what the lesson is but I will get to the bottom of it.

Head into work and put on a brave face.  Head is still going for it pain wise.  The best thing though is the nausea is not really causing a lot of issues.  Guess there had to be a good side to today.  Spend most of the day sorting/figuring out Google apps, etc. Head off about 3:15pm to see Nevil and Rose before they head back to Renwick tomorrow.  Then head home. I would tell you what we did – but I can’t remember what we did – doh   I know we had dinner, but I honestly can’t remember anything else.

Bearly manage to eat any dinner as taste changing and nausea are back.  Then start on the blog, and watch tv.  Slow going writing tonight.  Just had a gem of a pain going through my head – more like my SUNCT ones that I used to get the Botox for, but starting on the left and going through to the right.  Painful to the extent it rated as a 9 and brought tears to my eyes.  These sorts of ‘aches’ can go back to where they come from thanks, as I don’t need or want them.  I would say that it is M&D time, but since Milo tastes so lousy now, it is changing to be, W&D – water & drugs time.  Anyway, off to bed soon to read, seen as it is working in making me sleep the whole night – well almost.  Take care all.

Kia Kaha.