3 Too Many

T Day = 30 (Adjuvant chemoradiation) – 9 Radiation & 13 Chemo to go this round.

Another fairly good sleep – woke a coupe of times but went back to sleep till 5:45.  Up and into the routine for the day – drugs at 6am to start the day. Chemo at 7am, anti – seizure & steroid at 8 –  it goes on.  Decide that seen as I am carrying this extra weight and it’s not going to run away on its own, I head to the gym for a light to medium workout – I know they said don’t do it but I need to do something  – so manage close to 25 mins in there then get on the spin bike for a 4km ride.  Pain levels aren’t registering even yet – so that is good.

Get on with some work and then it’s time to head to today’s zapping scheduled for 11:10. Get there and find they are running behind as one of the other machines have suffered a breakdown so they are shuffling patients around.  They get to me 30 minutes late.  But on the good side they have thought about yesterdays issues and have some spacers about 2mm high that go at the bottom of the clips which seems to work wonders. – I can breathe!!  But on the downside as they have altered the alignment of the mask they have to do another TC scan to check the reference point – so again it slows it down, but as I can breathe all is good.  Finally leave about 12:15 and head upstairs to see Sarah (little sister)  as she has been admitted to hospital with an infection in her foot.  Have a quick catch up with her and Magenta’s there too.  Was nice to see you both – hope you get well soon.

Time to duck home to make a sandwich for lunch then back to the hospital for the meeting with the radiation specialist doctor. He is happy with how it is tracking and how everything is progressing so happy too.  He has suggested to drop the steroids to 1 tablet a day – that’s a quarter of what I was on 2 weeks ago.  Also ask him about some new surgery technique that they use Gamma Radiation to ‘cut away the tumor. Mor on this later.  But he says that basically because of the type of tumor I have that it is not that easy.  Though he did say that after all the treatment there might be some clarity in how the ones I have attach to the good brain cells then if there is a clearer line they maybe able to do something with it.

Off then to get the boys from school as they have a haircut, immunisation shots then to footy practice – so busy.  I help out with Jacobs practice and the back line in particular as they are not playing well. All good as I give them a rev up and tell them to get on with it.  Home then for tea  – just as it starts to rain – perfect timing!

Sit down to blog – struggling as keep falling asleep   I have already deleted half the blog once! – doze off and fingers on random keys on the keyboard do it!  So I’m thinking M&D time early today then head to bed as I am falling asleep constantly now!

Rug up warm or batten down the hatches where ever in NZ you’re reading from – those in other locales enjoy and let’s be careful out there.

Kia Kaha.

T Day = 29 (Adjuvant chemoradiation) – 10 Radiation & 14 Chemo to go this round.

Well – it seems when you take the max of the pain killers you can they do knock you out cold! Slept solidly through the night and actually feel less foggy and annoyed than yesterday.  I wish I could say the pain has subsided completely, but it hasn’t, though it is not as sore as yesterday – yet! I’ll take it. Downhill run now to finishing the Radiation, which will mean no more daily visits to the hospital and been locked into the mask, or the side effects of the radiation – yay!  I can do the Chemo as a 6 month run easily I think – well mentally I have already got myself over it.

Quiet morning – play with getting more ROMS (the Android operating system and hardware config) for cellphone and a new one for the tablet.  Got to play with this stuff it’s what the future is.  Also look for some apps for the tablet as well.  Pain is starting to kick in again – ah – really not another bloody day of it!

On to the stronger pain killers after brekky – as can bearly move at all   Get dressed then and off to radiation treatment at 10:10.  Has to be the worst days treatment ever!  The mask is far too tight and I had to have it removed 3 times as I couldn’t breathe and once I was about to pass out.  They alter it a little bit they can and realign it, then have to do another scan – so an extra 10 mins locked in – this is the toughest day in the mask so far.  Finally walk out – at 10:50 – 40 minutes to get it done when it’s normally about 20 at the most including a scan.  Having a bad day all round really!  Feel quite weak from it all too.

Have rest reading the paper in the sun then have some lunch as tum is not to bad at the moment – pain is up there though.  Down lunch and pain killers then off to see Paul and Helen on their farm in West Melton.  Meet the famous Little Miss Sunshine (race horse)- she returned home from the trainers this morning.  Go round and meet the other animals to – very cool setup.  Nice to have a catch up and see you both again.  Thanks for the meat too.

While we’re out West Melton we go to visit Pam & Karl as well as haven’t seen them for about 3 weeks.  Nice to have a sit down and a chat about things so a good catch up and nice to see you both.  And thanks for the veges as well.

Home and time for tea, boys showers and light the fire as bloody cold!  Quiet evening as pain not good so blog and watch TV then an earlish night I feel as if I have another day like this and Radiation is as bad tomorrow as it was today then I will need to be rested as it is going to be a draining day – get zapped at 11:10 tomorrow then have Doctor at 1:30 and a blood test in between – yay – NOT!!

Rightly folks enough for today as going to relax as best I can in front of TV then M&D time and sleep!  Have  good day/arvo/evening where ever you’re reading from.  Take care out there!

Kia Kaha.

T Day = 28 (Chemo only in weekends) 14 Chemo to go this round.

New record – 7 1/2 hours sleep!! Have slept from 10:30 ish til 6am straight – wondered what the hell the noise next to me was – it was my alarm telling me to take my drugs! So I guess the steroids decrease is starting to help in that I am able to sleep better.  Though I’ve had a longer sleep I feel crappy for it – foggy feeling today and already feeling nauseous from the drugs   and all I’ve had are the anti nausea and stomach lining protection ones!  Body is aching too like I’ve been beaten.  One of these days coming up I feel!  Oh well might be time if needed to break out the extra special anti nausea drugs that stop the first ones making you ill – don’t you love it – they stack the drugs to so they counter each other.

Joh is up early too as she needs to be at the airport by 7:30am as her flight leaves at 9:30.  It is literally a flying visit and has been great to see her – pity it is so short though – but understand.  Sad saying bye – but will see you here or there very soon. Well provided they lift my travel ban – it will be there as give the boys a holiday too at the theme parks (honest its the boys that want to go). Thanks for visiting Joh – wonderful to see you

Keep up the drugs – will be odd not getting up early and having to clock watch to take drugs in 2 weeks time – might even be novel and sleep in!  Hell I might even feel a bit more normal as I’ll drop from 15 drugs a day (not including pain killers) to 7.  Hopefully the energy levels will bounce back too.  This is the stabilisation month to recover and let my blood levels come back a bit, and let the swelling in my brain from the radiation settle as well.  They have even said that I may be able to indulge in a small beer occasionally!

Have a bit of a moment while in the shower thinking about how sometimes I have people saying to me – that what I’m / we’re going through is not all about me – it is also about those around me.  Well there are some days that I think that those that pass those comments need to stop, think and put themselves in my shoes! Empathy not sympathy – and understand the type of cancer that I am dealing with.  I have a terminal brain cancer – therefore I have an unknown amount of time left with unknown effects – where as those left  will keep going long after I’m gone – I accept this – so accept that I accept this but don’t tell me that I’m missing or not watching how others are affected. Also accept that on 16 March when they found the tumors but did not know what they were that everything in my world started to change, then the 30 March news meant that the world as I had it was now a different place – I had to rewrite everything that defined me – I was facing dealing with an unknown amount of time left, with 3 aggressive tumors, with an unknown treatment plan or even what sort of treatment they could provide for – but that’s OK I can deal with this because regardless of what they plan for you either way it’s the same end game. It’s like if I push myself some days its cause I want too – I do know my limits still leave me to it – I’m not a dog that sits on request cause I look tired! I’ll more probably bite. With the tumors and drugs and treatment yes there are mental changes happening – I forget things, I can’t make judgement calls immediately, I need a few minutes to process things sometimes. I hate not having any independence anymore – imagine yourself reading from this point on that you can no longer drive, can’t drink, need 24 hour supervision and can’t do an activity that you love! Work and life plans, travel – all gone.  Welcome to your new reduced life – by the way – it sucks (they don’t tell you that). It is a lot to deal with and process – you suddenly become reliant on others, and some days do really weigh heavily on you  and pee you off no end!  I try to be normal and shelter others from how bad the effects I am suffering are and just suck it up as I don’t want to show the world just how bad some days really get.  But please stop telling me it not all about me – I do realise that! There – grump done – well not really a grump more a just letting you know where my heads at sometimes.  I guess what I’m saying is just cause I’m dealing with what I’ve been dealt – don’t dismiss that as I’m not needing a bit more understanding sometimes – I don’t need to be wrapped in cotton wool – but I do need to be understood that I am dealing now with visible changes – I have lost my hair, my face is swollen, I have put on weight, but I am also dealing with mental changes – as mentioned above.  If I decide to eat something don’t add your opinion to it  – I may have been dealing with 5 hours of nausea waves and not eaten – I don’t judge or comment on others choices – at 44 I can make my own choices.  I’m here still and intend to be for as long as I can – that is the unknown.  But I am changing – subtly some days, but there are changes – blob in eye, hair loss, clarity thinking, sleeplessness, etc.  I have good days where all is good, I have bad days where I have to hold myself outside the dark places that will consume you if you were so inclined, and stay in control.  Shit happens to all people not just bad or good – as I’ve said before we are dealt what we can handle no matter how hard. 

Having a bad day all round now – can’t think straight, nausea is ruling and pain is starting to be the top dog.  Stronger pain killers not doing a lot so may end up top shelf yet to get on top of this – very sucky!!  Have lunch through the nausea but can bearly move with the pain :- ( – given in to the strong pain killers at 4pm.  The Halswell Pinkies are playing against Western today and go down 3-2 bugger it.  Sorry I couldn’t make it guys – sure you did Halswell proud.

Quiet arvo as it hurts too much to move around.  We have Abigail (niece) over for tea tonight – so doing home-made burgers – yummy  – I will force myself to eat those.  FInish off the grumpy blog today.  Off to take pain killers – strongest I can and other drugs and off to bed I think – need rest.  Getting zapped at 10am tomorrow – yep enjoy the sleep-in folks – I’ll be up at 5:45 as usual to med up and get ready for the day ahead.

Have a good one.

Kia Kaha.

T Day = 27 (Chemo only in weekends) 15 Chemo to go this round.

Sorry for the late posting – to tired to actually type anything that would have made sense Saturday.

A not to early start as didn’t get to bed till about 12:45 but managed to sleep through until 5:45 – so can sleep solidly when / if needed. Head downstairs to get my drugs ready for the day – pain is not to bad today either. Footy day so will be nice to be hopefully be able to make it through without falling asleep or feeling crappy.

The boys come downstairs about 6:45 to get in some early gaming on the Playstation.  I have a shower then do their brekky – usual fuel for a Saturday – spaghetti and toast – no eggs today. Wonder how good a day it’s going to be for them as they are both in dream land a bit.

Off to Lachie’s game at Westlake against Ferrymead Bays – another game of 2 halves – Ferrymead dominate the first half, Halswell come back in the second – but damage is done and they go down 4-1.  Off then to Jacob’s game at Halswell against Coastal Spirit – very similar to Lachlan’s game – 2 halves, but this time the other way round. They are not sticking to the game plan and the coach – if he had hair (sorry FIsh) – would have torn it out! They end up going down 6-2.  ON the plus side – Kylie and Mark Reid’s boys play for Coastal with Josh in the same grade as Jacob and OLiver in the same as Lachie, so they are both at the older boys game.  Have a good catch up – and arrange to meet next weekend – as we have several years to still catch up on.  Fantastic to see you guys though – man the boys are growing up quickly.  Off home then as there Halswell PInkies game isn’t until Sunday this week.

Cruise around home and do a few chores and have lunch.  The arvo sort of ambles away – which is good as I need to rest a bit as feeling fatigued today.  Jacob arranges to go and stay at Brad’s and Lachie arranges for Josh to come and stay here.  All good.  Joh gets home from her day out visiting her friends.  Having F&C for tea – which Joh is happy about as the Aussie F&C’s suck apparently and are hugely overpriced.  While waiting for tes to cook I walk up to the petrol station about 1km away to get milk (I could have gone to the dairy next to the F&C shop but thought the exercise would be good and get my steps up for th GCC).  Perfect timing – up there and back and walk in to them wrapping tea up.

Cruisey evening finding new ROM’s for cell phones and tablets and drifting off constantly :-(Not good when you are playing with code & resetting phones and a wrong push of a button can wipe everything or turn it into a lump of plastic. 

Finally decide to give up about 10:30 and head to bed after M&D.  So all in all a quite day and needed it as energy and body are tired.  Hope everyone had a good day and are enjoying their weekend – esp. those NZ folk having a long weekend.

Kia Kaha.

T Day = 26 (Adjuvant chemoradiation) – 10 Radiation & 17 Chemo to go this round.

Another crappy sleep – awake from 3am with pain & discomfort – bugger it!!  Manage to drift to sleep on and off till about 4:30ish  then give in to the heart burn pain and aching joints – downstairs for painkillers. Make a warm water and baking soda drink for the heart burn, and a cuppa tea for  bit later and dose up on painkillers then do the stretches the Physio gave me to easy the joint pains – lot on in the house at 4:30!  Most people sleep – not me!  Sort out my meds for the day – pretty much a routine now.   Painkillers start working about 5am thankfully – as walking around like a little old man.  Log on to work and check changes that had asked to be done had happened – all good – fantastic.  Work on clearing out old emails too. 

Make it to 7am and roust the boys. Then hit the shower myself as the Chemo will be delivering its punches soon and the warm water definitely helps.  The nausea is now starting to kick in earlier as feel sick already Manage to scoff down a piece of toast – tum seems to accept a piece of toast so happy about that.  Then off out the door with Joh as the driver today – we’re dropping off the boys off first then off to zapping at 9am.  The mask is very tight again today – and they are planning on another CT scan as the image yesterday wasn’t quite right apparently.  Ah  that means another 10-15 mins in the mask! Manage to stay calm and breathe more so not to bad today – hopefully on Monday it’ll be even better.

Finally leave treatment and head to Cafe Raeward to meet Jono and Bernard for brekky.  Joins us then drops us down at Logistics where we are spending the day taking out the last bits of equipment that are left around the Logistics site that need to go into the new building or dismantled and stored.  Make s nice change to do something different and not be staring at a screen.  Mange to hang on till 2:30pm then Joh picks me up and we head for home picking up Jacob along the way and also go via the chemist to collect my next lot of Chemo drugs for the week.

Get home then turn around and off to the Cancer Society as the boys and I and another Cancer patient and her 2 kids are going to have our pics taken handing over the cheque to the Cancer Society from What Now.  Traffic is diabolical!! Finally get there, so all good.  Smile nicely too – hate having my pic taken!  Will watch out for the pic and where it is published.  Home then via the supermarket to get bits for tea.

Get home and sit down – manage to fall asleep for about 2 hours in front of the TV.  Must have needed it.  Wake up to Jacob rubbing my head and telling me my hair feels like grip tape that they use on their scooters!  Nice! Tea is also ready so scoff that down then watch some TV.  Gat a call from Graeme (good mate) and have a fat chat with him about nothing much – it was great!  Then blog time.

It is now 12:35 and finally finishing it off.  Just tried now so need to head to bed – done M&D time already too – might do painkillers now to see if I can sleep till 5:50am.

Take care out there all.

Kia Kaha

T Day = 25 (Adjuvant chemoradiation) – 11 Radiation & 18 Chemo to go this round.

**** Happy Birthday Lachlan!!!! *****

Another earlish start – well 5am anyway – but a good solid sleep through the night.  Head is aching – but that is the price I now pay for the steroid decrease – so am willing to do that trade.  I know I keep saying about the decease in steroids – but really for a week now everyday has been an improvement on the last in terms of how I’m feeling, coping, behaving, and dealing with things. It is making it easier to deal with the side effects of the radiation and chemo actually.  Which makes it easier all up. 

Advantage of been up early is that I can do yesterday’s blog – sorry about that but was far too tired to do it last night.  Get blog done and do some work as well – productive morning.  Then Lachies and Jacob appear at 6:30 with Sue about 5 mins behind them –  can’t growl as it is Lachies birthday so he is excited – obviously.  Get Lachie to put the dog out and he does a double take at the new footy goal outside – big grins He then sits at the table where his other pressies are and goes through opening pressies and cards.  He also gets a digital camera from us so is wrapped! On with the day – Lachie gets ready quickly and heads outside to kick the ball at the goal for as long as he can squeeze in before school – the whole time he has a huge grin on his face – nice to see and a moment to remember for me.  Did have a moment again though writing in his card as your mind goes to how many more of these will I get to do?  Guess that’s why I need to store and make all the good times count.

Off to drop Lachie at school then off to work as zapping is not till 10am today.  Jono takes me round to the hospital.  The mask fits better today  – thankfully so as they decide to do the CT scan (for checking alignment) today which means about an extra 10 mins locked into the mask.  I manage to control my breathing and survive it without panicking.  Hopefully tomorrow it is a little looser too.  We then go back to work via the Coffee House – great coffee!!  Into work and follow-up on a couple of jobs and close another 2 – nice to feel normalish.  Head off about 1:15 then as Sue picking me up as energy fading again – a normal for the arvo.

Get home and Sue goes out, so I put my feet up for 30 mins to charge up before the lads arrive home. They both get in and both have won their Thursday school sports footy games – Lachie 13-0 and Jacob 7-1.  Good work.  They graze then don boots and outside to take shots at the goal – looks like the goal is going to get well utilised. 

Joh (big sister)  then arrives from Aussie as a surprise for the boys –  funny as they sort of stood there and looked at her and Lachies gone – oh Hi Aunty Joh – then gone  – oh ah Aunty Joh!!! and run and hugged her.  Same as Jacob.  Was quite funny to watch as they had no idea she was coming over!  Sue then arrives back sporting a new hair do – just as this is happening so got to see it too.  All very cool.

We do the birthday cake or afternoon tea as Lachie wants to eat some, and it is his day Very nice cake – caramel flavoured and chippies.  We then have home-made curries  for tea (Butter Chicken & a Beef Korma) – again Lachie’s request, and have M&M trumpets for desert. Can’t eat another bloody thing!

Blog time and a milo then have a catch up with Joh as she is her until Sunday morning – only a flying visit.  So will sign off now.  Have a fantastic time where ever you are reading this and take care of yourselves.  Remember to take care of each other as well as yourselves. M&D time – cheers!

Kia Kaha.

T Day = 24 (Adjuvant chemoradiation) – 12 Radiation & 19 Chemo to go this round.

Sorry for the late /early posting folks – but overdid Wednesday as a whole – had a great day but there was no way I was gong to be able to blog last night and as a busy day, no chance to prepare even in advance.

Another restless – but full sleep night – the steroids decrease seems to be paying off finally.  Just need the moon face to disappear now!  Up early as usual – actually when not feeling foggy or drained it is a beautiful time of day – quiet and peaceful (bar the odd rumble of a quake booming some mornings, but in Canterbury that’s almost akin to a cow mooing in a paddock somewhere), just as long as they boom is not followed by a long shudder!  Feeling ok today though the pain is up fairly high so into pain killers first up –  start gentle then go from there.

Getting zapped at 8:50 today so Sue is going to drop me off on the way to work for it , then on to work for the 2 of us.  Got to keep up routines as it helps with coping and also with providing a sense of normality to what can be a consuming situation if you sit down and let it become that.  It’s also nice to break free of the 4 walls of home as there is only so much you can tolerate before cabin fever kicks in. You need to watch, listen to those support people who are around you – ie your family – as they also have bad sleeps, concerns, and worries, that they don’t necessarily want to impart on you . I need to remember sometimes that it is not just about me – it is about everyone –  as what is happening with me is impacting lots of people in so many different ways.  I have spoken with so many folk and the common things are that it has got people thinking about their own mortality if told they were terminal, how they would cope with a partner who is terminal, how you deal with an unknown amount of time left, what emotions should I be displaying, and why, how can I support the survivors (you folk that will live on – that is a huge one to deal with and could almost be the subject of another blog). Listen to each other, talk, and if you want to talk to me about anything then yell out – happy to waffle on a bit – good at that still.  But please don’t forget each other.

The zapping is particularly hard today as the mask is very tight now – to the point that I can bearly breathe.  They are going to see what they can do to ease the pressure across my nose as that’s the main concern (the only trouble is there is alignment marks on the nose piece which they can’t alter) – but it is so tight that I can only open my lips just – I can’t open my mouth or eyes – this is by design.  They can’t make a new mask either as the alignment will have to be redone which would take approx 2 weeks which is a delay they don’t want.  So the option is suck it up  for 12 more zapping or suck it up for 12 more zapping (and hope the moon face decreases quickly).  Anyhow manage to get through the session.  Thursday is going to be fun though as they will probably want to do the weekly CT scan which adds another 10-15 mins on the time locked in!

All done and off to work.  Have I said how great it is to be in the new building – the whole hum of it and everything – just fantastic.  Get down to some work  – have a good day – nice to feel that achieving something – though slowly as need to jog memory lots – guess there are bits missing after all.  Still sit there and have to map things out to jog the brain then fill in the blanks. Got several bits of work on the go so it is a nice distraction.  We head off to Tavern Harewood for the usual Wednesday lunch then Martijn drops me home as energy draining.  Log in and progressively keep working through the job I was on in  the morning as it is dealing with Canada I at least have some time zone advantage up my sleeve.

Mum stops off to visit and drop off Lachies present for him.  She is not well and so doesn’t stay long – it must look funny as I am staying about 5 feet away from her at all times and she is following me around – like 2 magnets opposing each other – she walks forward and I walk back   I just can’t afford to pick up and germs or lurgy!

Energy and pain levels bounce all afternoon between brilliant and diabolical! Oh and their good mate nausea pays a visit from lunch time-ish and lurks with intent in the background!  So between trying to stay functioning and managing rest breaks between pain spells while trying to not want to reach up what drugs you’ve consumed becomes a fun activity – not!  Evening goes smoothly – seem to have adjusted to the effects above and help get dinner for Lachlan’s birthday tomorrow (Thursday) sorted, as well as assemble one of his presents outside, blow up balloons, and be a general under foot hazard for Sue – I specialise in that skill

FInally call it quits before I fall over completely about 10:30 and do M&D time and bed.  Exhausted is a simple work to describe how I feel and I think I was asleep before my eye lids came together!!

Anyhow folks – simple busy day – but the steroid decrease is starting to pay benefits hugely in my general well-being and are starting to feel normalish again.

Till the morrow.

Kia Kaha.

T Day = 23 (Adjuvant chemoradiation) – 13 Radiation & 20 Chemo to go this round.

Well another night and another good sleep – well waking once then getting up at 5:45 to the alarm.  Been looking at what has changed to make these differences in my sleep patterns – the only thing is the change in the amount of steroids that I’m having!  So have been doing some more in-depth research as to what these  things do to you besides give you an appetite from hell and blow your face up like a balloon!  The mask is now that tight that I can bearly breathe – I can open my mouth about 5mm and have to take normal breathes for as long as possible through that – not nice especially when you have a CT Scan day which adds another 10-15mins on top the treatment time.

Having a nausea day too – the waves have started hitting the shore early today and since breakfast I have been feeling poorly.  Still ignore them and get on with other things to distract myself from what’s going on.

On another note – it turns out that most of the side effects that they have been putting down to radiation and chemo or tumors are more likely all steroid based!  The scary thing is that those whom have reported similar issues are on half the dose I have been on for the past 5-6 weeks!  The side effects that match up with mine are –

• Wilson! – muscle atrophy (wasting) & left leg weakness
• confusion
• blurred vision
• irrational behaviour
• insomnia
• moon face – swelling
• appetite increase
• weight gain
• tiredness
• fatigue
• joint pain
• headaches

As I get most of this and since I am now on half and managing better, I will be talking to the Doc today about decreasing the dose to be only 1 or ideally half a tablet per day. The price I might have to pay though is having more headaches – well that’s a small price to pay really to be normal I think.  Really p’eed off that they have let the steroids over run like this so much without recognising what’s happening.  The chemist even commented when he gave me the steroids script that they have never dispensed so many of them in one go.

radiation goes well – the mask seems to be less tight which makes it easier to cope with as I can at least breathe without feeling like I’m about to suffocate.  Then home to have lunch – egg sandwich – got to hit the food in between the waves of nausea.  Hits the spot nicely – and the tum seems to be happy with it – for now.  Back to the hospital, then for the appointment with the radiation Registrar – we hit him up about the steroids and decreasing them more.  He understands why and agrees that I can basically lower to a level equal to a quarter of what I was on with them over the next 3 weeks – then weaning off completely coming off them over the stabilisation month in between, with them starting again when I start on the 6 month Chemo straight run.  So – if you ever get into the Oncology circle of drugs – ask and research them, as it seems that as with this situation, they overlooked something for too long and the price I have been paying is un-necessary (in terms of side effects, etc).  Otherwise they are happy with how, where I’m tracking and my health, bloods and weight is all looking good & well.

Off then to collect Jacob, then Lachlan.  Lachlan has a Orthodonic appointment, then home to get ready for footy practice for Jacob – I sleep the whole way round as the energy demons, have snuck up on me – again.   Not surprised – but still hate the just drifting off randomly. I stay home to recover energy and get tea ready as have parent teacher interviews for Jacob tonight.  All good news – well the standard good news from teachers.  He could try more, stop chatting and apply himself totally.

Home again  – bloody cold.  Tired as  – so not going to be a late night.  Nausea is still rocking in, in waves, but thankfully managing to stay on top of it.

Anyhow – that’s about it for the day.  M&D time coming up then bed I think as shattered.  Have a good one folks – where ever you are.

Kia Kaha.

T Day = 22 (Adjuvant chemoradiation) – 14 Radiation & 21 Chemo to go this round.

Well a good long sleep after heading to bed early last night – well until 4am anyway as my friend pain again – wakes me from my slumber.  Oh well – doze then until 5:30.  Get up and into it for the day – usual morning routine – pain killers, cuppa tea, sort out drugs for the day, start taking drugs – you know the things you do everyday – oh well at least you do if you have Cancer and can’t sleep!  Then get the brekky bits out ready to go.  Decide to ignore the docs and head into the gym for a small time to do some light weights as I need to do something with this extra weight I’m carrying and to try to feel normal again.  Not ready to lay back and let the tumors dominate me!  It’s great – about 25mins in gym – just light weights – doubt I could do what I was doing before this.  Come out feeling great – it helps clear the mind too.  Just ned to get on the spin bike for a bit next.

Give the boys the treat of shaving off the rest of my hair seen as more has gone awol overnight  – I’m stunned at the speed of how quickly it disappears.  Rush then to get ready as zapping at 8:50 today and we’ve got to drop Lachie at school on the way.  All good with the zapping and blood test.  Then off to work.  NIce to see the new building such a hive of activity and with so many smiling people in it.  Work goes well – actually feel like I got somewhere today.

Sue picks me up at 1:15 and manage to do a couple of chores (for Lachlans b-day) before heading home.  Log back into work and keep working on what I was earlier.  Get a call saying we have a house to live in while Fletcher’s fix the house – yay!!! Go and have a drive past – brand new house – very nice.  Boys all excited about it too.  Get home to find Alistair – work colleague from Southland waiting to visit.  Nice surprise.  It was a great catch up and nice to hear about your plans too Alistair – safe & enjoyable, carefree safe travels.

Home then for an early tea – energy starting to fade and nausea kicking in big time   Still manage to eat, stay awake and have a game of cards with the boys.  Blog time – not a long one today as not lots to go on about really – another work day and a day of tiring but managing it.  Pain has been better today – guess that’s the beauty of having  a high pain tolerance. 

So signing off early tonight – M&D time about 10 then off to bed for another – hopefully descent sleep again. 

Have a great evening/day/ arvo all – stay safe out there.

Kia Kaha.

T Day = 21 (Chemo only in weekends) 22 Chemo to go this round.

Well another night and next to no sleep – well bugger all anyway!  Awake at 3am with pain – then got take pain killers at 4am wait for them to work – then back to bed till 5:45 and alarm wakes me to start the daily intake of drugs. Bloody aching all over – joints are giving me hell today and can bearly walk!  It is more comfortable to be on my feet so make up a pancake batter for brunch as we have the Booths coming over for brunch and a catch up today. Then it’s up to get Lachie out of bed at 6:15 as he is going to What Now again today.  This time he is one of 3 kids getting handed Adam’s fundraising cheque for the Cancer Society – there was a group of about 200 people riding scooters (like Vespa’s &  nifty fifty’s) from Christchurch to Hokitika – under the name the great scooter safari. Sue is up and gets him off to the studio in time, then home and back to bed for her – no point been up this hour of the day if you don’t need to be.

Bizarre weather today – it is warm but looking threatening with rain, but mange to put through 4 loads of washing – get towels out then it rains – curse it!  30 mins later rain gone – warm and sunny – washing out again!!  HIts 22 degrees – what i it with this weather at the moment – I  don’t know how long since it has been rock hard ground and no rain or real winter to speak of yet – there – I’ve just jinxed it!!

I keep plodding around and wait till I have the Chemo drugs on board before hitting the shower as i know the kidneys are going to get their morning workout and the hot water in the shower helps to ease the pain – also I’m due the next lot of pain killers – and today is a pain day   At least today is not as fatiguing as yesterday was and I am coping better because of it.  Also the blob on the eye seems to have shrunk  – yay!!  So I’m not wearing the eye patch today.  On the down side though I now have a band of baldness in the right-side of my hair – hair today – gone now!!! It’s official  – my hair loss is really underway – no smartass comments please!  Considering just razoring the rest off now as it looks dickie!

The Booths arrive for brunch (and as they relatives arriving in town at 1:45 so are on a timeframe) Greg, Sue and Jacob get to work cooking while Wendy and I sit back and observe ;-( – on the menu today we have Pancakes, Waffles, Bacon,  maple syrup and loads of toppings. All very nice and very filling   Had a lovely catch up too with Greg and Wendy.

Afternoon sort of melts away in the autumn sun – it is still very warm but the wind is coming up.  The boys have gone to Pioneer Pool for a swim and I am intending to go out for a walk – this weather is too good to be ignored,  I am sick of feeling flat and crappy, and I have just dosed up on pain killers – so I’m ready to roll!!  Plus as part of the steps  – walking challenge that IT are partaking in will help compared to yesterdays total of 3800 odd!  Managed to go for a 5 km walk around the block – all but painful – but done it none the less!  God it felt good to break free of the house!

Home then at the same time as the lads, and we have home-made pizza for tea.  Sit down to watch the Food Truck – and again the sleep demons arrive and out I go like a light – I really hate that when you’re awake then – gone. Need to follow it up with the doc’s as they could actually be classified as seizures because of how they are and not fatigue as I think they are. 

Been doing more research on the steroid (dexamethasone) I’ve been on – turns out beside the ‘moon face’ that is a common effect along with a lot of the other effects – pain in joints, mood, appetite, weight gain – and as they’re had me on the maximum dose for the past 5 weeks it means that the effects have had a good chance to get hold.  Now they’ve decreased the dose to half, they have said it could take another 5-6 weeks for the effects to drop off – if you like.  In fact I have been going through all my drugs and checking out what is the real info on them and particularly how they interact with each other.

Well folks – that’s about it for today  – signing off earlier as to tried to keep going – must be all the hair that I’m loosing – have a clear bald spot now!  M&D time early and some rest while I can as if the pain demons return then could be another broken night again.

Have fun one folks!

Kia Kaha.