3 Too Many

T Day = 10 (Adjuvant chemoradiation) – 22 Radiation & 32 Chemo to go this round.

Sleep – glorious sleep!! yes with a big fist pump!!! Woke once but went straight back to sleep.  6.5 – 7 hours straight and feel so bloody awesome for it!!!  Still up at 5:30am but I’ve slept and feel rested – well almost normal.

Hopefully these patterns will continue, as not sure if mentioned yesterday that the steroids are getting cut back by half a dose over the next 2 days too so see if that will help at all with sleeping – as the other side effect, beside bringing on an appetite from hell, is the brain activity amps up.  Down side – they ease the swelling on the brain from the radiation & chemo – so may get headaches and pain more – but I would/can do pain more than lack of sleep I think.  More a learning to get it balanced act really.

Right the waffling teachings of today from the right side Bros – is about taking advice even when you’re the most stubborn ass in the paddock!  I know that I have had everyone tell me to take it easy and rest when I need too, not push myself beyond what was normal – cause I now have a new lesser normal.  But what I struggle with is that I have also pushed myself to keep going – call it stubborn or determined, or share bloody mindedness – whatever, but I knew my limit and how much more I could keep going beyond it.  Well I have now learnt that I have a new limit, and each and everyday while treatment continues that limit is reducing.  I know it is reducing but the inner me doesn’t want to concede that as the mental me sees it as a way of showing to those outside me that I am not well or tied or not as strong as I was – which I don’t like.  In other words I am trying to say that I have a huge conflict with myself that I am trying to deal with but find it heard to express or verbally get across.  In fact I am finding this almost the hardest part to deal with as I have to change years of attitude and behaviour to accommodate these unwanted things! This is what is starting to get me about.  Don’t get me wrong – I have a huge amount of fight in me to go against these things, but I am learning that the way that I have to battle them is not quite the head-on – gun it out approach that I would normally take.  As the Doc said yesterday – the CHemo and Radiation are there to attack together the tumors, and the side effects are that you will tired from it – but this is good as that means they are doing their thing , and you have to help by resting when you need it as it helps the body recover, flush the bad stuff out, and repair the good stuff that gets battered along the way.  I guess a great nights sleep and the brain actually processing something of a more in-depth relevant nature – I have now come into today with a new approach to the battle – and that is a simple one – rest when I need it – anywhere – even just putting my feet up is enough.  So there is the learned lesson I now have taken on – so if you see me dozing or sitting with my feet up – I’m just recharging.

Off to the Red Zone today – new building visit again.  Get there a bit early to meet Bernard at the cordon – so have a scone and coffee at the Coffee House in Montreal Street – haven’t been here since before the quake – great to see the old girl survived.  Awesome coffee too!!!  In the new building – lots of desks, power, computer cabling getting done on all floors – it is really looking like an office building – all very exciting!!  Check out the view of from my desk – faces NorthEast but can look either side to see around all directions – fan- bloody tastic!!.  I love it!

As the Radiation robot that usually zaps me is having issues at the moment my appointment today is at 12:40 instead so Bernard drops me out by the hospital after a quick-lunch at the BoatShed.  They finally zap me about 1pm – can’t get grumpy as they are doing there best at the hospital been a machine down and all.  All done quickly and meet Sue at the door.  Home then for the arvo.  Grab a quick nap of an hour while Sue and the Boys go out school shoe shopping.  They return with school shoes – and skateboards – go figure in my day they came as separate items! Actually was the skate board around? Or was school around?  Can’t remember! Cooking Chicken Madras for tea – very yummy.

Quiet night all, up.  Speak to Jane – Sis in law – quickly.  Nice to catch up Janey.  Energy fading quickly again – so got to rest up.  M&D time now I feel, and a head for another hopefully brilliant sleep!

Have  great day/evening/sleep all.

Kia Kaha.

T Day = 9 (Adjuvant chemoradiation) – 23 Radiation & 33 Chemo to go this round.

Well – early to bed early to rise I guess in a way that is very true.  Broken sleep – with pain since about 1:30 – pain killers not really doing their thing bugger it.  Then the brain starts amping up processing things – ahh no not now thanks – sleep time.  New tack on dealing with this – making notes – this helps a bit.  Manage to get through pain and waking until about 5am before relent to needing more drugs and a cuppa tea.

One of the things I had been pondering over night though was that yesterday – Monday  – I discovered that my predecessor from the role I held in Southland has secondary brain cancer and months to live.  I didn’t say anything yesterday as I was actually still processing it.  What’s the chances – same jobs, same location, same fate! I know – don’t read too much into it, but this is now the second person I know that has developed secondary brain or CNS tumors.  It makes you ask if it we are more open about when we get sick or is Cancer now more freely spoken of, when it once was seen as almost a tabu subject that a person was cursed with?  There is so many types of tumors/cancers now that I doubt anyone reading this will be able to say they do not know someone touched by it at sometime in their lives.  Anyhow – not hung up on it – just sharing the irony of the situation.

Got a call that the radiation treatment machine is broken so my 12:20 zapping is now moved to 5pm tonight – finally got done not long before 6pm.  That’s fine as it still gets done.  Actually suits at the moment as tum /nausea are not at very good levels!  Oh well – can’t pick them!  Still have the 1:30 appt with the Radiation Registrar  – which goes great – but do get a telling off for not resting as much as I need to.  OK – I promised from now on that I stop and rest.  It was spelt out clearly that I need to stop and rest to be able to allow myself to repair and dispose of the rubbish from the tumors nuking else it will tak its toll on me.  I ask him about the blob that has now appeared over my left eye – he says it is normal part of treatment and considered a side effect bother!  So work from home as it is the best option today.  And probably will be a form of normal from now on as I can then rest when I need too. 

Day going is well – though feeling very tired like someone hs opened the drain pug on my energy – still trying to get used to that sensation.  It is honestly like the batteries are just taken out – and down you go!  Dad stops over to say bye as he is about to join the ship again.  He also tells me that my Uncle in Aussie (wasn’t close to him) died on Sunday from bowel Cancer – that now makes 4 people who have died (not all of cancer) since I have found out about my diagnosis.  As I’ve said before to people – some days you get drizzle – some days you get the whole monsoon bucket!! Firm believer still that you will never get dealt more in life than you can handle – and each time you will learn and come out so much stronger from the experience.  Just remember to use the support of others when it is offered and never be ashamed or scared to reach for it.  We are all in this world together.  Anyhow – assure Dad that I’m all good and will be here when he gets back – and the best thing is I’ll just be finishing up my last week of Radiation when he does return – so he has given me a focal point!  Though he will be facing visual changes not gradual ones when he returns – but he will cope – I’m sure.

Wondering where the bad weather they are talking about is as it is a lovely sunny day out and was almost tempting to ditch things and go for a stroll before the drain is pulled again.  But unfortunately I can’t go as Sue is working from home too, and we have to head off to the hospital very soon.

Arvo breezes by – get in a 60 minute nap before dropping boys to footy then me to radiation , then back to footy, then home for dinner.  Evening breezes past too – am going to have an early night again to try to catch up on the sleep lost from the night before.  I so hope that I can get a good sleep as working in the red zone tomorrow morning and need to be able to function.

I hope that you’ve ll had a good day /evening and this finds you well.  M&D time is calling – yipee!!

Kia Kaha.

T Day = 8 (Adjuvant chemoradiation) – 24 Radiation & 34 Chemo to go this round.

Well the early night last night worked a treat – a great nights sleep until about 4-4:30 when the pain starts kicking in again.  It is not just head pain – it is an all over pain – back – around the kidneys, joints, etc.  Eventually get up at 5:10 ish to take painkillers and make a Milo as I find that standing up actually helps hugely.  Guess this i snow going to become a bit of a new routine – and the time of day is not to bad as I have to start the drug routine at 6am anyway – would just be nice to sleep almost all night and wake at 5:30 to an alarm.  Oh well – put it down to learning and hope.  But at least I feel good, in a good head space, and thinking clearly.

Early radiation today – 8:40 – Sue driving so drop Lachlan at school on the way then to the hospital. I talk with the radiation team about the side effects (when you sit to wait for your treatment if you are getting adjuvant – combined – chemo/radiation treatment there is a checklist you must read everyday and point out/mention to the team if any of them apply to you).  And how I felt so good on Saturday and most of Sunday and said that it must be the radiation that wipes you out – buzz – wrong!!  They said that it was due to the Chemo and probably more good timing that I had a good weekend as the radiation tiredness will start to kick in – fan f’ntastic!!  I’m really looking forward to that – not!!  Also some of the other side effects will start to come through like hair loss – stop laughing!!  Anyhow radiation went well today apart from I have now got one side effect they warned of – and has become worse during the day a shadow/tinted blob in my left eye (this is cause of the right side brain controlling the left side body – and is a side effect that they hope will fade once the radiation is all finished fingers crossed).  Still bloody annoying looking at white backgrounds and seeing a blob there.

Into work then and on with the day.  I’ve been thinking about the energy crashes that I’ve been suffering so decide that it maybe just needing food on board to keep going and keep moving.  So I eat small amounts when I can – I say when I can as the other lovely side effects of the Chemo is now coming through – nausea – I keep getting waves of illness pass through – only small ones at the moment thankfully.  But as the doctor & nurse said, in between waves eat – don’t worry what it is  – just eat.  So doing that.  And guess what it works!  I get picked up about 1:30 and head home as while going well enough with energy I am fading of and need to nap.  So have food then hit the bed for an hour.

Boys home – so get lovely welcomes when I see them – they know to leave me alone if I’m asleep, which is great and really understanding.  Wake feeling quite refreshed too – which  feels good.  Apart from the blob in the eye still stalking me – ggrrr – this is going to pee me off – almost makes you feel off-balance.  Decide to run the mower quickly over the lawn before the weather finally turns.  Can’t believe mid May and 2 x 20 degree days in a row and the ground is like concrete and dusty.  OK – mowing lawns – as small as they are – might have been a bit brash – it takes its toll energy wise.  But at least Wilson is behaving so no desire to feed him to the mower this time   Wendy pays a visit and brings chocolate cake – yum (settle droids)!

Quite evening – dinner is Rohs very delicious Pumpkin soup and choccie cake for dessert – I’ve got to eat when I can – honest!!  Boys off to bed – for half hour reading before lights out.  Jacob reading a story from school about a family escaping Germany during the second world war.  It is very good – and he is enjoying it and learning about it so he is going to get I am David out of th Library to read next.

Anyway – there’s the run down of what I feel is the most calm, normalish day I have had in several weeks.  It almost felt – well normal (apart from the blob)!  Hope all enjoyed their days too.

M&D time now – enjoy

Kia Kaha.

T Day = 7 (Chemo only)

Happy Mothers Day!

Well – actually not yet – sorry folks absolutely beyond energy or brain levels to be able to do anything so heading to bed to try to rest. FIngers crossed I will wake feeling revived and ready for the week ahead.

Was I really that tired? – well hell yeah – I felt like I was in a fog that much I was floating almost – couldn’t decide if I should be rocking in a corner or trying to make cuppa tea.  So off ot bed very early before I fell over and ended up in hospital.

I was up at 5am ish again – felt good but pain was kicking in all over – seems to now be the new normal   Got up took drugs, get days drugs out ready, make a MIlo while the painkillers kick in.  Boys want to make Pancakes for Sue for Mothers Day so decide to make the batter up for them.  It’s like a prepared TV cooking class by the time I’ve finished measuring, etc – all the dishes, lined up in order measured and just ready to be added – why you may ask? Me and my little OCD things?  Nope – just some of these drugs and the way the tiredness kicks in I am doing things like this to make sure that I get it right else I’ll forget.  When I say about a foggy sensation – it is literally that – I can’t think clearly, senses seem to slow down, reactions probably go over the top.  It is just not good   Anyhow the batter works perfectly – and kitchen returned to its normal state.  Happily pottering around in the kitchen for about the next 2 hours – don’t ask doing what, cause I can’t remember! But standing is good for the pain.

About 7:30 Mother Nature slams a very loud but not sharp quake into the house to wake the boys & the dog.  They appear downstairs then wanting to game it up for a bit on the PS3. Ask for noise levels to be considered so that Sue can sleep in – they are great and duely oblige. 

Sue gets up about 10am  – great sleep in – boys do the pressy thing – 2 pairs of slippers and a magazine subscription – nice.  I Russel up the pancakes and bacon, with lashings of maple syrup!  All bellys full and admiring how it is 20 degrees outside – just like a spring morning!  What a brilliant day. I clean up brekky as it keeps me busy and stops me thinking about things, fogginess, pain, etc.  We have got out some awesome huge home kill chops for dinner that Helen & Paul dropped off so make up a Balsamic, Garlic, Rosemary marinate to get them ready for dinner.  Get everything in pots ready to go as heading ot see Mum after lunch.

Cruise around the house till time to go and see Mum.  Had a really emotionally sad moment trying to write in a Mothers Day card to Mum.  It sort of takes on a whole new perspective when you start wondering if it is the last one or how many more of these I will be writing out – but not because of my mother growing old or frail – because of the odds I’ve been dealt!  Anyhow – lt it out –  as that is what I have found is the biggest thing that helps.

Get to Mum’s whose suitably happy to see us all.  We’ve got Mum a WiFi router so set about configuring it and getting her to stop dragging the bloody old wired router around the house when she wants the internet – I know (son in IT and she’s been mobile like this for about a year).  All sorted tested and done.  Even hooked her cellphone to it to lower costs of email through mobile data network.  WHile I set it up SUe and her discuss the family tree and get more info for a genealogist that’s looking at it for us.

Home then to dinner –  all underway – even mange to get Wilson to agree to help put a couple of security latches on downstairs windows.  But then the energy drain is pulled and I start to crash – make it through dinner, then sit down to watch the Food Truck on TV and within about 10 seconds out cold!  Wake 30 mins later – defiant mood in pain and foggy – it’s Mothers Day so I’ll do dishes and tidy up, etc.  All sorted but then the energy is zapped completely – so this takes us back to where the blog started today with me saying I’m to tired.

Yes I’ve got to start resting when I feel the drain go on. Yes I have to listen to those around me saying that you are not looking in a great way, Yes I need to be able to take it when been told to do something – this is the biggest one – I must not always do it my way and be stubborn.  As this hurts the ones that are looking out for me and causes the stress we don’t need.  I’m trying to learn more – as I am through this whole battle.

Have a fantastic day all.  Till later today. 

Kia Kaha.

T Day = 6 (Chemo only)

What an awesome way to start the day – nearly 6.5 hours sleep through the night – no foggy feeling, and OMG – almost a normal level of pain.  In fact it is only the back aching around the kidneys and a headache that caused me to get up at 5:45!  Please can I order more nights/starts like this.  No random brain activity either – just normal!  As it’s a big day thought I’d start writing the blog out now so not to disappoint your Saturday reading

I have a good feeling that it’s going to be a great day – especially as it is full on footy day too.  Both boys Lachlan are up against CFTC – so should be a good hard games, then I’ve got to be at Halswell by 1pm as the Premier’s are playing in the first round of the Chatham Cup today against Nomads & they are wearing the Pinkie socks in support of me. Then the Masters Pinkie team have their game against the FC2011 RSA – the way I’m feeling this morning – I’m certain I could go and run a whole game honestly I feel that alive – it is just so bloody fantastic!  I’m not about to though as just taken the Chemo for today – give it 30 mins!  Yep – here go the kidneys starting to hurt Might jump in to a hot shower as that helps, then  have brekky).  I guess this will now be the new standard pain – headaches/migraines out – kidney back pain in – well if it means extra time – it is a small price to pay in my eyes.  Unfortunately Lachlan’s team go down 7-0 & Jacob’s team snatch defeat from victory and loose 4-3!  Both good games though.

Here’s the blurb that went in the game day programme if you want a read –

Welcome all to The Nest for this 1st round Chatham Cup  game. The Chatham Cup is the pinnacle trophy in NZ football as it is open to all NZ clubs. I know the lads will be giving their all out there in a battle for the win aiming to eventually  get their hands on  this equivalent of the FA Cup but also to give the mental boost needed to push their season ahead.

For those whom don’t know me & are wondering why everything is Pink centric today – I’m Antony Edmonds or “Pinky’ around the football circles of Christchurch & Southland. Having played for Thistle AFC (Invers) & of course our beloved Halswell in the last 12yrs.  My time at Halswell has seen me involved as a Player, Gear Manager, & most importantly a Junior Coach which was a highlight as I could pass on the years of the coaching that I have endured & what kept my love the game alive. The commitment to the club is not just from myself with both our sons – Jacob (13B) & Lachlan (11A) playing and my wife Sue being involved in various roles.

As we all know, life, like refs, deliver match changing penalties at the wrong time, & on 30 March I was given my first ever Red Card – a diagnosis of 3 inoperable Brain Tumors. Not the sort of call that can be appealed as there are only 50 of the type in the world per year. 

In true Hawk spirit, the support & care from my Masters Div 1 team mates has come to the fore with shaved heads,  fines , pink socks & wrist bands – and most humbling act of all renaming the team to Halswell Pinkies. The support though is not limited to these fine gentlemen – as I have played alongside a good number of you over the years & I know & embrace the support from all quarters.

I know we have a huge battle ahead & with the same strength that I am taking to my battle, I hope that our lads today can take the same strength into today’s game & come out victorious!

Enjoy the game today and I hope to see you all upstairs in the clubrooms afterwards.

Will roust the boys soon as they will need to fuel up for footy and let it digest before playing  – stops stitch! They must have heard he as can hear their tiny footsteps on the stairs- yeah right – tiny footy steps – thump, thump!! They’d never make cat burglars!

Arrive at Halswell about 1:15 meet the Prem team lads, wish them well & go out to watch the game.  Good game all round with Halswell looking the domanent team all the way – and walk away 2-0 victors.  My team the Halswell Pinkies are on the field next to the big game so change direction to watch them.  The lads walk away victors and 3 points richer with a 3-0 win including 2 goals from Shane! All in all it’s been a very humbling day and incredibly emotional  day  (though kept them in check) with so much attention placed on to you around so many people who have your every intention. And lots of talking with everyone.  All  in all it has been a very long but totally enjoyable big – fun filled day. Just goes to show that the day started brilliantly and continued on like that is wonderful.  Hope everyone else had a fantastic day has been successful in all ways possible.

On a light note – I was ‘allowed’ to move the car further down the car park at footy – well all was going great – pulled into in empty spot and took foot of the break and thought  – odd car not moving as it normally does.  Put in park and leave it .  Get out and realise I’m pushing on the `barrier around the park doh in 12 years I’ve never done that.  So the team ind out about it and I have a special fine imposed on me!!

An interesting to note that without Radiation today I have had so much more energy and lasted all day.  Yay!!!  In away I’m looking forward to Radiation on Monday but not the side effects  – been tiredness.  That said just about falling asleep on the keyboard now, so will sign off for the day. 

Nearly M&D time  too folks.  Remember – Sleep/play/party well.

Kia Kaha.

T Day  =  5 (Adjuvant chemoradiation) – 25 Radiation & 37 Chemo to go this round.

Sleep – glorious sleep – I managed to get a broken but near 5-6 hours sleep last night!  Up at 5:30am still but feel like a bunch of fluffies   Obviously the 3 bro’s were in a bad head space 9 no pun intended, or sorry for the crappy day they delivered on Thursday), as woke several times during the evening with the tears freely flowing for no reason – this still fascinates me hugely as I’m not sure what thoughts/feelings are triggering them.

Fossick around the kitchen getting the days drugs lined up and ready along with brekky things ready.  Then it’s into the day drugs at 6m, next CHemo ones at 7am – these start the kidney’s hurting about  20 mins later – they’re getting quicker.  Decide to hold off on the taking of the  taking of painkillers as I’ll see what the radiation will do to me first – usually induces a headache.  I’m pleased that the drugs are nearly all gone by lunchtime as it means I have only 7 to remember to take after lunch!  In shower early as Radiation is at 8:30 this morning, so no time to dawdle around feeling sore or sorry about myself.  I just have to accept this is it now forward.

Dad – my driver for today is here ready to roll. Off we go for the last zap of the week – rock in to the room – zap,whirr – sucky music again – done.  They tell me that I may start feeling more fatigued from now on – tell them about yesterday, so they change the day till  from yesterday I might start feeling fatigued!  Ahh – got to love the adaptive nature of specialists.  They are a fantastic bunch I have so happy as.

Off to Cafe Raeward to meet the rest of PortaCare & have our usual brekky.  Dad joins us for  a coffee then heads off.  Feeling tired already after a brilliant start – really!  That bad already   Back to Logistics – another sad moment as have after 14 months got very used to our rural, airport, industrial surrounded compound.  It will be missed.  Get some wok done, but catch myself falling asleep (fortunately the others have missed it) but when I say fall asleep – it is literally eyes open, eyes closed – head dropped. Really – that quick – guess I’m in for another day like yesterday.  Bernard, Jono and I heads into the new building, but I keep falling asleep, so arrange to get collected outside the cordon – not safe me in that state inside the Red Zone, I need to be home and resting. Sue collects me and we head home.  Nap time then for about 75mins wake to find the boys home and feel great again.  The first visual sign of the battle has appeared – with the Radiation leaving a reddish burn mark in front of my right ear – it has begun.

The Mathews family – NIck, Anna, Cameron, DJ & Oliver come over for an  F&C dinner – 3 fine young energetic lads running around with limitless energy – ahh I remember I could do that 2 months ago  For dessert we have some lovely cupcake that Cameron has made – and i am about to go and make my Milo, get my drugs and scoff down the one I left – yum.  Brief encounters today on the part of the fatigue – but also tomorrow is a huge footy wise.  If you happen to be in Halswell get to the nest at 2pm to see the Premiers take on Nomads in the first round of the Chatham Cup  – and sporting their Pink socks in honour of yours truly.

M&D time now folk – work, party, rest, sleep well – however this blog finds you today.

Kia Kaha.

T Day – 4 of 42 this round (26 Radiation to go 38 Chemo)

Howdy folks – one word to sum the day foggy!! In essence I’ve had about 3-4 hours sleep – but of that about really 1 1/2 – 2 hours actual sleep.  The brain just would not shutdown last night at all.  Actually find it interesting as Magenta was asking me about it last night when I say that it doesn’t shutdown, then I go and have a night of it.  Well I’ll to try to explain – I was actually waking every time I moved, brain is processing simple everyday tasks that are normal routine as if I am living my whole next day ahead of time.  DOwn to the detail of making a cup of bloody tea in the morning, after aI have got all my drugs out in their containers, and then making sure that I have checked the time so I can eat breakfast it really is that intense!!  And if I think off any other things that may need to be done then it seems to become worse.  So to kill time I make Wilson do some of his Brain training exercises to try to wear the mofo’s down.  Getting  to near 5 head thumping with a headache now – so decide it’s late enough to get up so head to make a Milo and read some of the overnight news, check emails and start on the general crap that the bloody brain has been working out for me.  Talk about ground-hog day!

THe Chemo today seems to start causing kidneys to ache quicker   Still not enough to make me buckle.  Keep going with routine – have a haircut – yeah I know – buy my standards it was getting long and shabby.

Off for Radiation at 10am today – call Dad – driver for today – and he thought it was 12:30 so good catch – haha brain didn’t read that one ahead of time did ya!!!  In and out in about 20 minutes today – then home via chemist to get next weeks dose of chemo – sad when they know you by name – but are really friendly and helpful folk – not glitz pushers of everything – just a simple community pharmacy.  I must be tired as I struggle to speak clearly.  Headache is coming back, and I need a lie down.  Dad drops me home and I head for a nap. But bloody brain has other ideas stop processing please!!!   Just for 30mins!!  Up again about 12 feeling nausea but hungry.  This is s common side effect that will get worse – great!  Hazy, sleep deprived, now feeling ill – talk to my inner self and just say that this is what it will be like for a couple of weeks while the Radiation and chemo treatment setup becomes habit – all setups have rough bits, and I’m just having a day of it today – so suck it up!  Sue gets home cooks a toasty for me and I force myself to eat – i have too.

Go to get boys from school as don’t want to be home alone anymore. Manage to stay awake for most of the trip but actually get more sleep than lying down at home – though brian hasn’t shut down completely yet.  Get home then crawl to bed for another 90 mins – eventually get to sleep.  Wake feeling so much better – thank goodness.  Huge improvement.

The PortaCare team – Cath, Bernard, Jono & Alison – are bringing over Chinese from Foodsing for tea (we were meant to have an evening out last week but I couldn’t make it).  It is great – lashings of food – great company, and fat chats about nothing much – gret relaxing evening – thank you so, so much guys.  A great end to a rough day for me

Well – there you have it another flattish day but I guess I’m going to have them accordingly. All in since T day started this is the worst day by far. Tomorrow I’m sure will be so much more better!

M&D time now – and bed – I need to sleep!!!  Hear that brian – switch off and sleep – I can do the small things with out you planning it!!!  Hope you all have/had a wonderful sleep.

Kia Kaha.

Morning campers – lovely 5:30am start today but had a decent 5 hour odd sleep without too much extra mind activity!   Mind you I have been thinking about  a blurb I’m going to write for the Halswell Premiers Chatham Cup game this weekend – feel quite privileged. So with this in mind head downstairs for the day as first drugs for treatment start at 6am everyday so may as well be ready.  Surprising I feel fantastic both energy and mentally so feel happy too.  Then Chemo on board at 7am – these I am starting to notice now the kidneys start to ache painfully about 30 mins after taking them – I’ll be fine. But noting these things and changes.  Have a chuckle when changing razor blades this morning – thinking that it maybe the last ransom price I have paid to these companies for shaving blades and foam as soon enough the hair will be gone, baby gone!  Oh and no more shampoo / conditioner – yep you do use it on a number 1 cut.  I have a special cream to put on my head instead.

Need to stick to times today as need to be at the hospital at 8:30 this morning for Radiation – this leaves me about 10 minutes to eat breakfast in the plan else it will be about 10:30 before I can eat and take the next drugs – easy peasy.  Dad arrives early to take me to the hospital – then hassles me about leaving – growl at him that I have to eat to take drugs – sorry Dad – was unfair but like yesterday – it is about me and I am running on a unflexible timeline.  Called to treatment room 3 and into see my friendly team that administer my Radiation.  I know the routine now, in on bed, locked into mask, buzz, zap, snap, crackle, pop – all done!  While getting zapped I think about why I’m laying here getting what in normal senses is a massive overdose of radiation X-Rays aimed at me, yep I am un-worried in any way about it.  It is the because of the fabulous team that administer it.  These folk are friendly, young (avg age for my team would be early – mid thirties I think) and are just so caring and relaxed about it – how can I feel stressed around such calm?  I leave with a red face/head (which fades) and looking like I’ve just slept on a tennis racquet (thanks to the grid system on the mask).  I actually don’t care what other people think it looks like (which is unusual for me in a way).  We’re off again 20 mins later.  Heading to Logistics and work – decide to make a surprise visit to the Portacare crew and work as feeling so good and I need to have some routine in my life with things.  Though will be watching my energy levels very closely.

My wonderful colleagues are wrapped to see me and we go about a catch up with everything.  Then I get on and do some work – wonderful to be able to a) remember somethings b) feel useful.  Energy and mental levels fluctuate more than the US dollar at the moment.  Then mid morning the drain opens and out pours the energy   others notice it which I find interesting and helpful.  I manage to rally again and have a catch up with the wonderful Valerie over coffee which helps to keep me rolling on.  Pretty soon it is lunch time – and guess what – not Cafe Raeward Today (caught you out) we decide to head to our other haunt (Tavern Harewood).  Have lovely lunch with good company (put down the cellphone Jono!).  Then back to Logistics to await my ride home.

Needing a rest definitely by the time I walk in the door as fading energy (it is like someone is turning a dimmer switch up and down at random on your body energy levels).  No warning – they just plummet.  So head for a nap and sneak in an hour or so.

My younger sister Sarah and niece Magenta turn up for a visit which is fantastic – I’ve been looking forward to seeing them again.  Have  great catch up about lots then they leave, as they’re heading for dinner at La Porchetta – nice.  We’re having Blue Cod and mash and veges – yummy – I’ve been craving it since yesterday so perfect timing! Hopefully the munted taste buds can taste it properly.  Thank goodness I can!  Lachlan tells us that he had been made Captain of the school football team for year 5-6 ‘s – so very proud of him!  He is very pround and it really has made his day and mine.

On to blog time now as fading again – and still got to do the footy blurb.

Sorry if the liveliness has gone out of the blog a bit over the past few days but with all the drugs and tiredness I get very fuzzy and it becomes hard to concentrate. I will look to zig it up again soon.  But on a passing note for amusement – I have had a couple of people ask how Wilson (the rogue left hand is going now).  Well Wilson has come and gone and tried to return but I am battling to keep him away.  He will not return – and his loose left leg is keeping in order too.  There are days I have to retrain them to function properly but it is about 95% of normal compared to about 20% 3 weeks ago.  Some of the odd spelling is thanks to Wilson – so sorry about that.

M&D time at 10-10:30ish for those joining in   – (that’s Milo, drugs 7 and a sweet treat as got to eat with the drugs).  You could just try the MIlo and sweet – I don’t want to encourage drug use thanks – I’m taking enough for all!

Kia Kaha.

Howdy folks – another early start 4am!  For as tired s I was yesterday last night, I just couldn’t shutdown for the night!  And when I did managed to doze off my mind was off in very dark places about what is happening, the end, etc, etc – so I won’t be sharing – sorry.  Got up at 4am and made a milo then read some news from overnight, etc.  Manage to doze off again til about 5:45 & wide awake again!  Damnit!  Doesn’t matter anyway as first drugs are due at 6am so decide to get up and head to gym.  Drug up and have an hour nearly in the gym – got to try to stay fit some how, though realise my new physical limits.

Feeling great and time for the Chemo drugs. This time i start to feel them – in that kidneys start to hurt a bit about an hour after them. Apparently this is normal and will b as the body starts building up the drug levels in my body.  I have to also up my water intake to help the dehydration that is a side effect of the Radiation treatment – fantastic – I’ll need to memorise every damn toilet between home and the hospital.

Dad comes over to visit early, plus he is my driver today to radiation so good to see him.  We have a good catch up and I explain the whole treatment plan and process to him.  He was just needing to get it all straight.  Show him the chemo drugs – he thought I had to go to hospital to get them and also be hooked up to a drip.  So all clear on the process.  Dad leaves me to do a couple of things before coming back to get me for the hospital visit.  Radiation is quicker today as they jut need to lock the head in, line up the lasers – then fire away.  Music is not the best today so might take my own sounds tomorrow – need to choose a couple of good zapping type songs. Especially seen as I can’t deliver any one liners to them as the mask stops you speaking – OK enough already with the smart comments with that revelation – (I can hear you saying they have found a way finally to silence him).

Off then to lunch at the Boatshed as I need to eat so I can take my next lot of drugs and before the next appointment – yep Oncology life at the hospital is very much appt after appt.  Dad protests that he is not hungry and doesn’t eat lunch so we’ll just go into the hospital cafe for one – I explain about the need to eat, he insists he doesn’t need too – “Dad – it’s about me! I must eat to be able to take my drugs  and I want a toasty from the Boatshed” God I sound like a spoilt brat!  But it got through to him what I was saying.  Lunch is good and we have a fat hat about lots more until Sue arrives for the second appointment. 

The next appointment is with the Radiation registrar to make sure that all is going OK (its only day 2 but guess they have to start some day).  Goes over everything again, to make sure that we haven’t forgotten anything.  Cover off the need to rest when tired and keep fluids up, etc.  The need for 24 hour supervision is discussed and I will be allowed a bit more freedom – yay.  Also headaches will start to increase too – but i can cope with that :-(Quite apt that he covers off the need for rest as get home then and literally feel as if someone has pulled the drain plug on my energy levels.  I fade from fine to flat in about 20 mins – it is a terrible feeling. So I crawl off to the downstairs bed for a nap.

Up in time to get dinner ready as Tuesday is footy practice day the rest of  the family are out so make myself useful.  Yummy if I say so myself – haven’t lost the art.

Home under the care of my youth careers tonight as Sue and Roh have gone to the movies.  Plead with the boys  to settle down as doing blog, and phone keeps ringing and drunk water keeps passing, and the energy drain is open again and head is hurting – feeling ganged up on a bit.  So if I missed your call tonight or the likes, then sorry – I was busy not coping. 

With that said – I feel it is M&D time and then try to get some sleep away from the dark places.

Kia Kaha.

Well here it is – T Day!!!  The day that the real battle begins.  This is the point  in time that I have been waiting for since the initial black Friday news on 30 March, where the radiation and chemical treatment is the ammunition along with my determination, grit and inner mental strength to fight these 3 unwanted guests head on. 

So with the battle about to start – I would like to slightly modify the words of a song that I love which I love and have listened too several times over the past weeks (funny how music becomes different during changes in your life – the words take on new meanings – and songs fit in the different places of your life – maybe just cause I love music but I digress).

Pink Floyd – Dogs of War

Steps have been taken, a silent uproar
Has unleashed the dogs of war
You can’t stop what has begun
Signed, sealed, they deliver oblivion
We all have a dark side, to say the least
And dealing in death is the nature of the beast
One head, it’s a battleground
Three tumors, and I will smash them down
One world … three tumors
The dogs of war won’t negotiate
The dogs of war don’t capitulate,
They will take and I will give,
And the tumors must die so I can live!

I know it sounds a little strange but my Dogs of War are the radiation and chemo and of course the attitude – the only death out of this all I am contemplating is that of the tumors (whilst we know that they will hopefully only be stopped in their tracks growth wise they will not go away – but any stoppage in growth results in extra time is of course wonderful for all).  I also keep in mind the words from a friend David whom I’ve met along this journey (and is fighting his own battle) – This Cancer will not define me, I will define this Cancer.

So the day started at 5:30am – up early as awake anyway but keen as to get started with this and to get into with the first pill of the treatment plan.  I have gone from taking 12 pills per day at 3 flexible times per day to now taking 19/20 per day at 5/6 times per day at set times – I also have a happy frying dose of radiation chucked in for good measure.  Welcome to Cancer my Radi/Chemo treatment plan!  First pill down, then reminder on phone (no surprises I have an app planning / tracking all these drugs) alert for next goes drug to take goes off, next drug on board.  Next one up is the Chemo drug – this is the one that I am curious about as it will be the one that shapes me for the next 8.5 months really. Take it  – no effects – hmm – is it working – I know just being silly not expecting a sudden wave of vomiting or something.  Just taking time to notice if there are any changes.  Next alert is an hour later then – yay – it’s for breakfast – yes that has to be scheduled to be eaten at a specific time too – then an after brekky cocktail of 5 more pills.  Have a laugh as I have my little containers for the day lined up on the bench in a timeline (yep OCD thing again – jelly bean moment).  The good thing is that most of the drugs are in the morning so that means I’m free from clock watching so much.

Have a moment after brekky , when it hits me that I have crossed the point now where the mental changes/battle that I have been dealing with for 8 weeks and for the most part if people were to look at me would notice little difference, is now about to become a visual change/battle. What I’m getting at is that I will be more fatigued, I will lose all my hair, I will lose weight – my illness is now about to be laid bare to the world.  And for some reason I am finding this a harder line to step over than ironically been able to talk to people about having a terminal illness or brain tumors.  I wonder if it is because people I don’t know will now look at me with that pitied look of owe they have cancer – poor person – and I won’t / don’t take pity, cause it is not of help to me or my family and it’s definitely not needed.  I must admit that sometimes I did look at people obviously going through treatment and didn’t know the best reaction to give them except treat them nicely as you would anyone else.  But now I look at them as cage fighters – the side effects are the broken noses, and elbow cuts incurred in their fight for their life so must be admired and praised not pitied and sorried.

Dad stops over to see how all is going and to get his laptop setup so he can track the blog too – this is a real moment in time for as he is moving into the tech world beyond TradeMe – scary!  Give Joh a call seen as I missed her call last night – have a good catch up and laugh – just what the doc ordered thanks Joh.  Time to head to the hospital for the first of 3 appointments there today.

First 2 appointments are with the Radiation team back to back with the second been the frying session. Start getting restless when the half hour first appointment is already half an hour late and I’m next on the table. Then Scott from the Radiation team turns up and goes over the treatment plan, etc, and explains that as he is with me that they can’t zap me so settles me down somewhat.  Sorry if I sound like a wound up spring but this is a major stage in this battle and I need it right.  In I go to the treatment room, the tem are friendly and have some good sounds playing.  They take about 5-10 mins to clip me into the mask and line me up for the first time.  Then its point all beams at the bastards and nukes away!  In an ironic twist U2 – It’s a Beautiful day plays (told you music has new meanings – & I love that song) just as the first zapping starts (it is done in several smaller waves as they target each tumor from different directions).  Doze off a bit as it is done – never let a nap pass you by and it is quite quiet and peaceful.  All over – can’t really feel anything except a prickly like sensation on head – oh well guess it’ll become the norm.

Next appointment then is with the speech therapist to get some tips on eating easily – as besides Wilson been an effect of the tumors I have trouble with my left leg and also have limited sensation in my lips & mouth which makes eating difficult and sometimes I choke.  So get some very helpful tips on handling meals and changing diet to suit better.  Home then via the supermarket to stock up on the new food diet – yum – droid tum in  hunting mode – this is going to be costly!

Headache coming on and fading out huge time and need to rest so go to have a 30 min nap – get up 90 mins later!! Really – anyhow it is enough to get me thru the evening – I hope.  Dinner is a yummy chicken and corn soup from our lovely neighbours – Deb, Glen Kat and James Balloch – it is very yummy and hits the spot perfectly – thank you so much!

So folk – bar the headache and tiredness day one of the first 42 is done and I’m now totally engaged in the battle for the rest of my life. I will close off the blog now, as fading again & you know the drill folks – M&D time soon.  Take care all.

Kia Kaha.