3 Too Many

Day 10 of 23 treatment free.

“When I’m right, no one remembers, when I’m wrong, no one forgets” – Anonymous

Another night down another day beginning – bloody frosty though. Broken sleep again – guess there is some normality to this and the pain all been part of having cancer.  Yet another thing they don’t tell you about, but then again guess it makes sense when you have foreign masses growing inside you..  Especially in your head – there is a limited space inside there   Might be a day for a bit of a waffle I feel as theres lots of stuff in there today. 

I have been considering the idea of a living funeral.  This is for several reasons – it would be one last chance to have a party and celebrate my life (which a funeral is really meant to be –  a celebration of life) with you all, it means that if planned properly, then folk can plan a trip here rather than rushing if I pop my clogs suddenly. I can get to enjoy the moment too and hear the good and bad about me.  And why should I miss out?  I am just putting it out there that is something I am considering.I know some won’t be comfortable with the idea or concept so won’t turn up but that’s fine I understand and appreciate their choice.  It also won’t be for a while so there is plenty of time to have a think if it is something you would be prepared to help take part in too.  When I have done more planning then I might put out some info and get a feel for number of people, etc so can plan location, etc.

Also another thing, I have had some folk worried about me and the pain and dark state that I am in.  Don’t stress please.  I am working my self through it.  The pain is now just an accepted part of the norm for having Brain Tumours.  I take pain killers, and some times it goes away, other times it takes a bit more.  The high strength ones I have now help hugely and if they don’t work then there is always hospital – again.  As for the dark place I am in – I’m trying to dig my way out and work out my resolve.  I will do it – by myself.  I know there is support out there – and thank you for it, but this is something I need to do myself – mental toughness test I guess.  And hell I have 3 time bombs in my head that are slowly pressing on parts of my brain that control – Visual Memory – this is already getting impacted as recollection of things, etc is getting harder and it is very frustrating as I had a very good memory. The other area that they are pressing on is involved in motor function, problem solving, spontaneity, memory, language, initiation, judgement, impulse control, and social behavior.  I’m also now wanting to just get on with the next round of Chemo – 2 weeks today – so starting to again clock watch-making it harder.  Ironic in a way that I’m wanting the treatment that is knocking the crap out of me to come round – well each time it is getting closer to been over so I may then have some time after that been close to ‘myself’ as I’ll get to again. 

Sue drops the lads at school then me near work.  Quiet walk into work again.  Slow day too as not feeling well and motivation is low.  Drag through it, listening to music – some again nearly reducing me to tears – damn it!! To much of a soft mop at the moment.  Leave about 1 to go and get a new Washing Machine as the old one sprung a leak and become a victim of the move.  It was 17 years old so guess it was allowed to crap out.  Then home to install it and test drive.  Have a rest for a bit as worn out – again! And we have folk coming to visit tonight.  Wendy, Greg, Jordan & Jaime visit then Jenny drops in too, then Nat.  Good to see you all.  Spend most of the evening trying to remember/look up the passwords for the server accounts in Southland as they are getting powered down tomorrow and will need to log them in again when it’s back on.  A bit taxing on the memory really!  But I got there – I think.

Time to sign off.  A bit more today to read on and think about maybe.  If there is one thing about this journey, (and I know I’ve said it several times), is that you have to learn it all as you go.  There is no one way or thing that fits every person or case apart from been mentally and emotionally hard – possibly more so when terminal.  M&D time then bed.  Hope all have/had a fantastic day/arvo/evening.  Have a great weekend too.  Take care and stay safe.

Kia Kaha.

Day 9 of 23 treatment free.

“Crying doesn’t help anything, try your luck with violent mood swings” – Anonymous

A sleep in – well 6am anyway.  But a less broken sleep and less pain.  Maybe it was just that I was so bloody shattered after the move yesterday that made me sleep and taking pain killers just before bed   Check some emails and then get on with things.  Defrost the car and head for school and work.  Frosty walk in to work. Take in the sounds and think back to what it was like 17 months ago, the city would have been filled with the sounds of traffic and people with folks going about their business.  Today it is the sound of concrete breakers tapping away and excavators humming and crashing their scoops contents into trucks. Only about 5 or 6 people on the street too – probably early tourists taking in the broken landscape. What a different world it is now.  Get to thinking about how much will be rebuilt – that I will get to see or experience.

Steady day at work – listen to some music while working on something that I have to concentrate on – good in one way but bad in another. A couple of sad songs play including one I have put thought about for the funeral – not a good look trying to suck back tears at work.  Really I’m happy to be there   Stupid music!!  Have lunch then get picked up and head to pick up the pets from their storage.  Both are very happy to see us.  Get them home then I have a lay down before I have a fall down.  Not feeling or doing very well at all.  Sue heads off to collect the boys.  Molly wakes me up by walking over me and purring – guess she is happy to see me.  And probably wants food! Get up and manage to drag myself aimlessly around the house for a bit.  The boys return home then Lachie gets ready and heads to footy practice.  Jacob stays with me.  A bit sad when a 12-year-old baby sits his 44-year-old Father! Still don’t mind at least someone is here if I decide to do the funky chicken. 

Dinner time – thanks Roh, blog, then drugs and bed – yep – very boring.  Sorry but when you feel crappy but sleep well there is not a lot of dribble fall from the head.  Also thanks Vicky & Alex for the flowers – lovely bright bunch.  Take care all.

Kia Kaha.

Day 8 of 23 treatment free.

“Never do anything that you wouldn’t want to explain to the paramedics” – Anonymous

 Another early start with the usual suspects – head to pain killers at 4:45 and wait for them to kick in.  Have a bad time with tremors too – can bearly hold a glass of water straight without spilling it I guess that a seizure is probably not far away based on this.  Generally you get more noted tremors and loss of control before you get hit with a big ones. I am just hoping that if I do have a seizure that it is not one of the major ones that through you into a catatonic state as has been reported with the type of tumours I have.  Fingers crossed!  Go back to bed to try to sleep off some of these effects and end up in tears for the next 30 mins or so.  I know why though – I am feeling with this latest development, that the physical me is now moving away from the mental me – ie. I am loosing control of some of the actions and behaviour as it is not done by a mentally conscience act.  These mofo’s have found a pressure point to be able to control some of my actions.  Scary!  And I don’t like it one bit.  The emotional side well that’s just completely screwed now and will have to just play second fiddle to all other things. I just can’t deal with too much at once anymore.  It is really to hard in reality to explain how it feels to be constantly monitoring every change, action, or behaviour you do in case there is a sign that a major change in my health is pending.  The only thing I’ll say is it is tiring!

On with the day – Jacob has just come storming downstairs – and won’t even speak to me.  Nice!  Please wait while I go and persuade a good morning from his grumpy ass!  A good tickle goes a long way to curing the blues and he is soon laughing and talking to me. Head to Hoon Hay Road as the movers are coming at 8am. They arrive at 8:30 and promptly start into action. Easy work to start with just directing the heavy traffic but they soon drop boxes that need to be unpacked.  I sort out the home entertainment setup – easy stuff to do. Nutty (Christine) turns up and helps out – absolute God send Nutty – thank you so much for the help. The movers leave about 12.  Have lunch not long after. Demonstrate real male eyes – look for the salt and pepper – first up can’t remember honestly what they look like!  Get a description about a minute later it clicks – then can’t see them in the pantry.  Sue walks over and picks them up – ahh – I’m positive they weren’t there 10 seconds earlier!  Bloody hell – I’m hopeless.

The mess stays behind – bugger.  Keep working through it until I have to head to the Neurosurgeon Appointment.  Then home again to keep working on unpacking.  How the hell did all this stuff fit in the bloody house in the first place??  The garage is also 1/2 full of boxes and they are not stuff that belongs in there. Need to rest as seriously about to fall down – feel absolutely crappy.  Take 5 mins to recharge then give in to Jacobs requests for a foosball game – I get trashed 10-5!  Head back to my chair then to sulk – sorry – rest and complete my blog as I don’t seriously think I will be capable of doing it later – head is starting to build a lovely pain level

Have dinner – thanks Wendy for the lovely chicken bake – perfect timing and very yum.  I then relax in front of TV.  Watch TV then head for bed after M&D time.  Take care all.  Sorry brief today but just worn out. and head hurting – my new normal.

Kia Kaha.

Day 7 of 23 treatment free.

“Life is just a phase you’re going through…you’ll get over it” – Anonymous

You may have noticed that I have started putting quotes at the beginning of the blog.  There is also a couple of poems I may share sometime.  These are just little ditties that help me get thru the crap of the day sometimes.  And today’s one, while off taste really, is a bit of black humour to me, and the sort of humour helps me deal with the reality of what is happening. 

That reality started at 3:30 today with the unwanted ones having a little party again and waking me.  I now seem to have this constant reminder that these guys are serious about their intentions by causing the pain.  I do what I can to mask this by taking pain killers but don’t enjoy or like that idea.  Back to bed and manage to get some more broken sleep.  Up again then at 5:45 as to uncomfortable to lay down anymore.  Yep – this is how it is now – head pain, restless and hyper brain again. Broke down in tears when I got up both times – for an unknown reason – it wasn’t the pain.  Was it cause I was thinking of all I was going to be missing again?  Or those that I will never see again?  Or was it cause I have been planning my funeral and trying to get it all in the right order that I will be happy with – hey I’ve got to have one last say   It is a reality folks – as morbid as it sounds or seems, I have to face doing it as it could get to the point where I can’t do this.  There will be a part to play for some people and I know there will those that will not want to do it – that’s fine.  I also know that there are those that will not come to it – they have their reasons too, but I would hope they could rise above it.  Cause like my theory on tattoos – Those that matter don’t mind and those that mind don’t matter.  Don’t panic I not about to drop off in the next 5 mins or something!!  Quiet a bit left in the tank still.  So I’m not about to drop a bombshell on you.

On with the day.  Into the office today for work – first time since last Thursday, though been working from home. Head off and drop boys off then me.  Nice to be back in the office.again with my wonderful colleagues.  Quiet day just getting on with getting on, and monitoring what my head pain is like.  Head off about 1:30 as wearing out.  Head home via schools to pick up the boys. Get home and get on with work again trying to set up a new FTP point for files to an external vendor.  Good challenge for the brain – like I need it

I got a call from an employment agency about a Management role they have that they would like to put me forward for.  Unfortunately I have to tell them what has happened to my health and it leaves the poor guy almost speechless – I hate it when I do that.  I guess that means that I’ll not hear from them again.

BTW – my new Chemo wigs arrived today – one for wearing to footy to support the Pinkies.  One for my alter ego that will come through, according to my work colleagues, after I finish the Chemo treatment (seen as it changes your DNA) I will become Odessa the Southern American woman with attitude   Check out the pics below. 

My new pink Chemo wig.

For my alter ego

Lachie & I testing out the new locks.

Nat and the boys arrive for dinner and to have a catch up.  I get the blog completed nearly so I can relax too.  Starting to feel very tired – hopefully enough to allow the brain to shut down tonight so I can have a proper sleep – chance would be a fine thing!  Do some packing ready to move back home tomorrow. Watch some TV then M&D time and bed.  Sleeptime – I hope.  Have a great day/arvo/evening all.

Kia Kaha.

Day 6 of 23 treatment free.

“It may be that my sole purpose in life is simply to serve as a warning to others” – Anonymous

Still not brilliant as the pain in the head is still very much there – guess this is part of what happens when you have these mofo’s of this size in your skull – and the Chemo treatment is making them swell up more.  So a restless sleep again, and get up at 4:30am to take pain killers and wait for them to ease the pain.  Login to work to sort out Web Editions (online papers) and read some news too.  Also start on the blog as easy to write the first couple of hours and also it tends to be when the most ‘stuff’ just falls from my head to the keyboard.

The mental and emotional blackness seems to be starting to lift a bit.  It could be because of the drugs I’m on since getting out of hospital or just that I have moved into a new phase of where this journey is taking me & us. If this is the new routine then so be it – I will have to watch the kick back that occurs in the week after I finish the Chemo to avoid getting admitted to hospital.  After all there is only 8 more treatments to go – easy peasey!  The positive of it is that I have now dropped nearly 7.5kgs since the start of this Chemo treatment.  I’ll be back to my old size in no time at all.  Got to try to see positives in what is going on.  Regardless how tough the treatment gets I have to do it and will do it.  It is not a time to give up or back down. When one family member is ill, all of the family is ill so I will fight on.

House comes alive with the others all getting up.  Jacob comes down and says he is not feeling well.  Then goes back upstairs and promptly throws up!  Thankfully into the toilet.  Back to bed for him.  I was considering heading into the office but guess I’ll stay put with Jacob.  Probably also a good idea as the pain is starting to come back a bit. Quiet morning at home for the boys – Jacob on the couch trying not to throw up – me at the computer trying not to throw up too – different reasons though.  If I see another bloody SpongeBob program I swear I will throw up though.

We head to Hoon Hay Road to take back some belongings and keep airing the house out & cleaning.  2 hours there wears me out   Crapping out to quickly really!  Yet another thing that I guess is now part of these bloody things!!  Back home then for an early dinner and then relax, finish blog and try to get to bed early as these late nights and early awakenings are going to take their toll on me. They have upped my steroids on Saturday so the brain is in hyper mode again. Actually that’s what’s probably helped pull me up emotionally – good thinking that man!  Jacob has bounced back – ahh the health of the youth and our one chuck wonder lad.  It’s enough to make you sick really

Hope all have had a great and enjoyable day/arvo/evening where ever you are. Be happy and safe.

Kia Kaha.

I’m free again!!  Discharged myself this morning about 11am with some new scripts and a new drug plan for the next few days. 

Was admitted as I once again fell apart with a migraine yesterday morning.  Even 4 codeine tablets couldn’t deal to it at all, nor the migraine tablets I have too.  Vomitting too.  Vaguely remember going to Rolleston with Jacob and Nevil for Jacobs footy, then getting collected by Sue to take me to the Hospital.  Use the green oncology card and get expressed into the A&E area and my own room again.  Just as well as I have all the lights out as can’t stand them – to bright.  Nurse buggers up taking blood and putting a lure line in – I bleed everywhere and now have 2 lovely bruises on either arm.  Didn’t really care as head to blood sore to even register the pain in my arms.  Finally get given some drugs starting with Panadol – yep nothing like top shelf hard ass drugs to get rid of a pain that barely lets you walk!!  But did I tell you it was a bottle of Panadol via IV not a couple of tabs.  Then eventually they hand out the high strength ones.  No fairies with flippers on this time like I saw with the last lot of them I was given.  See I don’t do any drugs above codeine really very well.  They decide to incarcerate me overnight to keep an eye on me – disappointing news as I’m starting to feel better – no brilliant.  Sleepless night to as the drugs I’m on keep you awake – so have managed about 2 hours dozing all last night. Mum visits me early to say Hi and see how I’m going.  Thanks Mum.

Discharged to home, but still have a headache and feel sick still  Manage to make it through the arvo without been sick, but not brilliant.  Head still hurting but will monitor that. Not really feeling hungry either – good weight loss program though.  Rose arrives back from her Lace weekend in Geraldine to collect Nevil, then they head back home to Renwick. Sue heads to Hoon Hay Road to do some more cleaning before we move back in on Wednesday.

Dinners coming up – not that I feel like it.  Then I’ll finish the Blog, and rest up again.  Going to try to shake this headache.  Might have a sleeping tablet too based on last nights lack of sleep.  Do M&D time – my style then bed time.  Take care all.

Kia Kaha.

I’ll do a proper update tomorrow as I’m in hospital for the night again bugger it. Head was not responding to painkillers so needed hospital strength ones.

Kia Kaha

Day 3 of 23 treatment free.

Woke at 3:30 but manage to doze on and off until just after 6 when the headaches got me into the day.  Still not in a good place really – so this is going to be a short and sour blog.  This is starting to get to me.  I can’t put my finger on what is wrong but just tired of feeling low and crappy.  And no I don’t want to talk to a counsellor/shrink or anyone else before I get anymore suggestions from anyone.  If I want to talk, I’ll talk.  If I don’t just accept it.  I’ll sort myself out.

Sue and the boys get ready to head off.  I’m working from home as I am getting picked up by the owner of the company that has been fixing Hoon Hay Road, and going to meet with him and Fletcher’s  to do the sign off on the repairs for the house.  Fairly quiet morning then off to the house. Takes an hour to go over everything, and a few minor things are picked up with the paint work, so they get the painters back immediately to fix it.  All is good so sign off the work, and all are happy.  About an hour later the carpet cleaners arrive to do their thing – may as well have it done while there is no furniture in the house.  They take about an hour to do.  Then start on cleaning the rest of the house while the curtains, etc. are down.  Big spring clean basically.  Will go back in the weekend and complete it properly.

Head home to meet Nevil and the boys.  Sit down for a bit as head sore and fight the sleep monster as well.  Login back into work to catch up with what is happening.   Then start the blog for today.  As I said not in a very good place in my head and are just feeling so angry and sad about I don’t know what.  I guess it maybe just the great unknown.  I need to probably make/take more time to reconnect with myself as I feel I have lost touch with me and this is not helping in any way at all.  I don’t expect anyone to really understand this but I miss myself – the old me pre tumors, pre 9 March when I noticed something was not right.  I guess I need to reconnect with the new me, and the messed up way life is now.

Have dinner and watch TV.  Days like this I really could do a drink!  Head is hurting at an almost new level of pain now!  As well as cramp and now I’ve just added a new trick – vomiting!  Not fun so finish blog. Will  do M&D then head to bed soon.  Just want to sleep off these blues really – chance would be a fine thing.  Have a great day/arvo/evening all.  And have an enjoyable weekend too.

Kia Kaha.

Day 2 of 23 treatment free.

 A sleep in of such today – didn’t wake till 5:30. Get up at 6am as there is only so much ceiling staring you can do and a cuppa tea is calling.  No real notable pain either so staying off the pain killers if I can help it.  Also the head is clear and thinking fairly straight.  And nausea – we will wait before judgement on that as it usually kicks in mid morning.

I better start really by clarifying a couple of things.  Yep, to say I have been down in the dumps a bit lately, well esp. after this round of Chemo would be true, but it is because I had such a fantastic week prior to it, feeling great and normal to take a plunge from that to very new low is a long way.  If I didn’t put out there how I was going/feeling or dealing with it then it wouldn’t be fair on me or you really esp. as if I see you then you know what possible state I’ll be in.  Yes doing this whole messed up journey is hard – mentally, physically, and emotionally – not just on me but on everyone that is connected in some way.  The sad fact of life I am also finding is that there is far to many people who have to support others with or deal to Cancer themselves.  It doesn’t matter how ‘survivable’ the type is, it still messes with you along with the treatments.  That is part of the message – if you like – that I have been trying to get out there – that I have found there is no one book that says you have this type of cancer so you will feel like this, and they will treat you like this, and you will have odds of this.  Really wish that it could be that easy, or even a simple app for the phone but what I have found is that in reality, it is tough – more on those around you generally.  You need to be positive that regardless of the odds – even terminal – that you can still fight it.  The drugs and radiation and surgery are hard.  But again be positive that they will help you and it will make it easier.  But the biggest aid in the fight is the support of everyone around you.  They refresh the positiveness you need some days when you’re down, a simple act of empathy (do not do sympathy unless you have gone through the same ordeal – well for me anyway, as it is a sure way to pee me off) – if you don’t understand the difference then look it up. But also if you are the cancer fighter / survivor then watch at how those around you are going too – they need support too.  Talk about it too – it helps, it hurts, its raw and it is real, but it needs to happen.  You will find new friends and make new connections.  You will also find that you have friends pull away and move from the light into the shadows.  They are still there, just you need to find them some times.  It needs to be accepted that past experiences or the reality of what is happening is too much, or that they just don’t know or feel they have much to offer – or any other reason really.  It is not my place to judge or surmise.  Whatever the case or situation – never give up the fight – and yes I can say that as even though I’m terminal – no chance of recovery or the tumors going into remission – I’m not giving up at all. The treatment I am getting is only going to buy time and some quality by trying to hit the brakes on the tumors growth.  So enough of the deep stuff for the day.  On with the mundane rest of the day.

Get ready for work, no brekky as feeling ill now, and head starting to hurt – knew it would.  Not in a happy mood really, so a fairly quiet ride to work.  Steady day at work.  Bernard, Jono, and I go to re:Start mall to meet Debbie and Aaron for lunch.  Have a good catch up and lunch then head off back.  Sue picks me up and we head to Hoon Hay Road to meet the Council about the new sewerage pump they are putting in.  All agreed on a location and sign our life away.  Then head off to collect Lachlan from school and then home.  Lachie gets ready for footy practice and all 3 head off.  I stay home to do some work – though tiredness is getting a hold of me   Put my feet up for a little bit then try to do some more work.

Make a Stir Fry for dinner and the trio arrive home just at the right time.  Dinner over, time to blog and then rest as the effects of the Chemo are still very much there.  Quiet evening, wait for M&D time then off to bed – hoping that tomorrow is a better day.  Have a great day/evening/arvo all.  Take care.

Kia Kaha.

Day 1 of 23 treatment free.

There may be no Chemo today but it doesn’t stop me waking at 4:15.  Can’t really settle back into a proper sleep and doze on and off. eventually get up at 6:15 as, once again, uncomfortable with pain in head and legs.  In fact legs hurting so much I struggle to walk properly – fun trying to go downstairs.  One at a time works well!  Make it down without incidence.Pain killers – excellent!  Feeling comfortably numb in no time – what a way to start the day.  Now that’s the pain dealt with – only the shitty attitude I am wearing today to deal with or is that to deal out!  In my head I am just not in a very positive frame of mind and feel I’ve got a very short fuse.  No brekky as don’t feel like eating so decide to go into work as don’t want to be at home today.  We have to head off early today so at work just after 8. 

Manage to hang in at work until 11:30 as I am feeling really lousy so Sue picks me up and drops me home.  She then takes Lachie to the dentist so he can get a tooth pulled out. I rest up the best I can feeling ill and thumping head again.  Get picked up and go to Hoon Hay Road to check progress & collect mail.  Pickup Lachie from school then and head to Pam & Karls for a visit.  Then to pick up Jacob from Brad’s house.

Home for tea then and time to blog and rest.  It seems to be the pattern of my life at the moment   Sorry nothing too exciting in the day or the blog – I have some deep stuff to spill out but the head is not good for doing so – so it will have to wait until tomorrow.  Take care all.

Kia Kaha.