3 Too Many

“There are good and bad times, but our mood changes more often than our fortune.” – Thomas Carlyle

First up, no apologies over yesterday it was what it was – and took way to long to get it over with.  Today has been better but almost at times it has been as bad as yesterday.  If you wanted to see a real Leo roar then I think the people still cowering at Barrington are still there in fright.  I will give you a very brief background into what has consumed life over the past week.  I do not expect you to understand it or even try to, as I am now not sure what of/in me has changed.

I had an MRI last Tuesday before I had my seizure, as I had some side effects that had blown threw since March when it all happened.  The scan showed up some changes and as you would’ve aware I was on my treatment.  Well today we had the confirmed results, I will not be having anymore treatment.  So I got to within 4 days of completing the Chemo.  I am now just on active pain management and under palliative care (don’t read this as it been the beginning of the end, it is just the control that will be needed at the end so getting in early ensures that it is not a mess when I need it).  See I have to have my ducks lined up nicely to make it work.

This past week has almost rated as the hardest I have had to endure – 2 nights in hospital, ending treatment suddenly and not how I wanted it to be like, when I finished treatment, having new drugs introduced, having my first seizure, and to not sure what or who I have now become.  I am lost in myself and onlyI can find me, but along the way I am tearing apart those that are within striking range when they are trying to help me, care for me and love me regardless of who I am/are or are becoming.  I can still put on my many game faces but they are becoming harder to maintain.

I just pray that I don’t take out to many people along the way as I’ll say it now – I’m really sorry if you get to experience a piece of me that is not normal or out of sorts but I really can’t help it. 

I found out today that James in the hospital that I tried to help, is a relative of a friend of ours (and a fellow blog reader).  Small worl, eh.  Then again the Edmonds in Christchurch is .2 degrees seperati0n not the luxury 2 degrees everyone else gets   I really hope that he makes a speedy recovery and managed to make the fight last to Christmas for his family.  My thoughts and best wishes are with him and his family.  Thanks for the call too Rowdy – great to hear from you.  Take care mate.

So to sum up the day for you. As not going into symantec’s of it.  But thanks for the messages of support and help over the past week – it has been helpful – really.  Today has been tough.  The past 7 days has been a living  hell.  I am no longer on treatment, so no more poisoning myself. I am only on controlled pain management.  The seizure I had while scary, was not an arm/limb flaying exercise.  I merely said I was wobbly while I was downstairs, then got brought too upstairs about 15 minutes later and really only have snippets of last Tuesday. I now live in a fog permanently. I am not sure at times who I really am (well that’s how it feels). I can feel fantastic then in minutes turn into a pain ridden confused grumpy A1 top class prick).  I am impulsive, and probably the worst best quality I have is I am stubborn!!!  This will keep me going the longest of anything I ever get given or acquire.I also now have a lovely habit of dropping off at random.  That is I can be talking to you and I’ll be out to it like a light.  I usually can pick up again from where I was but I also have to be careful even crossing the road as I could have an incident.  These are mini type seizures and may die away so to speak – fingers crossed.  Oh and I haven’t slept really in the past week and a half – avg probably about 4 hours broken a  night.

I hope this answers some of the holes in the blog and life over the past week.  I will not be going into it any further. The next scan will be in about 3 months unless something major now happens.  Right M&D time and another stupid attempt to get sleep.  Hope all have  had a great week/day.  Keep on keeping on as someone has too – I’m not doing a great job.  Thank you for all been there – it is wonderful to know.

Kia Kaha.

Not a good day. Nothing really to write about so will leave it at that. Hope all have had a good day. Till tomorrow.

Kia Kaha.

“If you’re in a bad situation, don’t worry it’ll change. If you’re in a good situation, don’t worry it’ll change.” – John A. Simone, Sr.

 Ok now this is getting really weird as I could have sworn that I had already started writing today’s blog but can find no trace of it – so if you find some idle ramblings laying around please send them back to me   This also means either I’m going mad, drugs are too good, or the tumours are toying with me.  Regardless I got to sleep about 2:30 – I think, and a crappy sleep ensued with nausea, and pain and restless behaviour waking several times.  Eventually get up about 8:30 to get meds on board.  The rest of the house is just starting to stir too.  Have some breakfast, make a cuppa and head back to bed for a bit.  A family plan of attack is drawn up on the day as we have a few things to cover off this morning.  No more time to lay around – up and into the day.

I meant to tell you about my hospital trip as it was really a case of paths meeting with several people over my time in there, but it is the paths that we were walking that is what made it interesting – if you follow me?  Lost?  Try to keep up.  Well the first real meeting was with a part Maori man – Tahu.  In the hospital, esp. Neuro and Oncology, you tend to have some patients that don’t sleep well due to brain injury, steroids, etc.  So they walk the Ward, supervised, day and night.  Well Tahu is a nice chap, unfortunately he could no long really form a sentence properly, and he no longer basically slept at all.  I got talking to his brother, and as you do you call your status.  He asked what was my ill – and I told him – 3 BT inoperable, etc.  A calm look back at me, he then point to his brother and says – the same.  He gets Tahu over and tells him.  If a face can tell a story in a single look then I got given a sorry tale.  I have never felt like I did from a look like that.  Tahu was there.  He was trapped, and the sadness and sorry in his eyes said more than I really wanted to ever face.  Tahu had a turn like mine a week earlier.  He had been fine and talking and ‘normal’ then collapsed came to unable to speak clearly, make a sentence, sleep, or do anything but walk the passages of the hospital.  His brother said that it was hard for the family, as they never got that last real conversation with him, and felt robed of the chance to say all that needed to be said.  Yes he was there, but was the real Tahu there?  It was unknown what was next for him, but palliative care was the start.  Tahu had developed an obsession of wanting to put a board game in the fridge though which was a bit of amusement, and did make you wonder if he was teasing a bit as the wry smile out of the side of the mouth gives it away.  Now I am telling you about Tahu as you see it is the first face to face encounter I have had with someone that in this case is a week away from where I had got to with a first seizure on Tuesday.  I f’n scared the crap out of me – really.  I was looking at my future as simple as that.  OK I might do it differently, but regardless, in a moment m external world may be shut out to all forever.  I don’t know if I will still be able to talk, remember, sleep, or even eat, but I now hold good byes, etc in more regard as they very really could be the final good bye in terms of words.  I thought you may like to know what it was like to view your fate in such a way.  Tomorrow I’ll tell you about Sharron the Nurse – all good and very helpful.

End up waiting for Lachie has he has got his difficult knickers on today and is going to be a stubborn ass A1 pain in the bum today.  Me, I’m just trying to figure which tick boxes I fit into today, as twice in 10 mins I have medium tremors, suddenly very weak and nearly collapse.  It gives you a wee bit of a fright and I just need to take a couple of minutes to regather myself and I’m fine then.  Decide that I’ll be fine and just deal with it.  Head off then to do the chores, and get back home about 2 1/2 hours later.  Not all accomplished but near enough. Meet Craig and the boys at home as Lachie is heading off to sta y with them tonight.  Have some lunch then Lisa arrives for a coffee and chat.  All good.  Lisa heads off and Sue takes Jacob to Brads.  It’s Brads B-Day so Jacob is staying out tonight too.  Craig then picks up the boys again and they head off.  Yay – childless today, and I feel like crap Might head to the movies to see SkyFall, so will have a nap this arvo so that I am in the right mental space to be able to handle watching it.  It will be interesting though as if just a Mall full of people messes with me to the point of wanting to run screaming from the place then a lot of fast movement on the screen in front of me (only could get the XtremeScreen tickets) could really be a tipping point.  Will let you know.  Wendy, Greg and the girls stop by then to see us and have a couple of beers on the patio with them.  Nice to see you all and thank you for the food parcel – very helpful.

Have an easy dinner with Roh and Andy.  It is the first real catch up like this without boys in many a while.  SkyFall is great (always loved Bond) – I manage to make it through the movie and not fall asleep too many times or flake out.  Very, very tired now though.  Still can’t pick my head space even now.  It is hurting a bit tonight and the random sleep monster is visiting  – still.  To the point it has taken me 15 minutes to write a paragraph up to here!  Hate it, hate it, hate it!!!!  Stomping feet!!!  Interesting trying to take your meds in the dark of a movie theatre   Hope all have had a cruisy day and not had to much upset their day/evening.  Till tomorrow  – take care.

Kia Kaha.

“You cannot discover the purpose of life by asking someone else – the only way you’ll ever get the right answer is by asking yourself.” – Terri Guillemets

So how did you cope with the marathon ramble from Thursday?  Sorry about that, just so much going on and through my head at the moment, that I had -to get it out.  There will be a little bit of that today too – but not as waffled.  Eventually got to sleep last night about 2:30 then was awake again from 4 til about 4:30 then 6:30 I was awake and up.  I will be very happy when I get to wean off the Steroids properly, but that is another 2 weeks yet by the time I come off them properly.  Feeling good for having little sleep, so help Sue up as her back is packed in properly today and takes about 15 minutes to get her out of bed.  I really hope the Physio can do something for it today.  Get ready for the day and even have breakfast as my appetite is coming back and nausea is taking a hike.

Hit the road and drop Lachlan of them continue to work. Jacob and I get dropped off and walk into the office. It is a bit of an eye opener trip for him as he was in the CBD with me on Feb 22. We walk past the Farmers car park where we parked that day, and he is shocked that a 10 storey car-park is now just a 2 storey pile of dust. Give him the EQ and fire lecture on the way to ensure he is safe. Jacob is my minder today and as such he is going to be in The Press building with me, but I have a2 hour meeting so he will be on the floor without me, at the time. Get in and get settled – provide iced chocolate, and a piece of cake as bribery. It works. Meeting goes great and finishes about 11:30.

Head upstairs and pack up as feeling quite drained. Jacob and I say our good byes, and hit the road for home. Trouble it is absolutely pissing down with rain. Walk around too the bus exchange as thought that a different form of transport is needed now. Plus it is a bit of as different adventure, especially for me as it is about 4 years since I last rode on a bus. We decide we both need food so get off at McDonalds. Have a grand feed – thanks steroids! See Aubery there and have a quick catch up, then Aub heads off. Jacob and I scoff down more food then head out into the rain. Get home absolutely soaked! So what.

Have a great arvo just taking it easy as feeling really fragile. Go of to indoor footy to watch Lachie play.  Has a brilliant game and they win 14 – 2. Catch up to with Sean, Wendy and boys, as Lachie is lLaSalle playing against their son, Lachlan. Head home then via the Curry and Chinese food outlets and the DVD store. Get a couple of movies run into Lisa and then Wendy. Quick Hi then off home. Have a very nice dinner then about to settle down to watch a DVD . Craig and the boys arrive then for a visit and a catch up. Have a couple of Bourbons as nothing to lose. And a great catch up. They head of for the night. Boys to bed.  I do the last of my meds for today then head to bed too.

A good day all up, especially the time with Jacob, as been the best day in many a while. I did expect to write this earlier and also they are a couple of things that I want to share about that happened over the time I had in hospital. This will have to wait until tomorrow at the earliest. It is quite important in how it seems to be controlling a lot of how I am feeling currently.

Trust all have had a fab Friday and totally enjoyable day leading to a fantastic weekend. Take care and be careful , you never know whose watching Take care all. Thanks for all the support.

Kia Kaha.

“It’s nice to be important, but it’s more important to be nice.” – Unknown

Howdy folks. Sorry for the change in tack really with the blog. I am trying to internally understand and cope with my turn on Tuesday. This may take a few days, but to say it honestly has rattled me, I now feel is the understatement of the year. Have learnt so far that my playing field that I could control (emotions, mental, etc) is now not possible. Sorry, I am learning to get control of them again. So if I am out of order or place then please do not take offence too much as I am becoming reactionary, and struggling. This does not make it right for me to be naughty either.

Well I am writing this at 2:15 am as I’ve had an eventful (Wednesday) evening on many levels. The have moved my room to be in a male only room. Don’t ask, as I queried why but they want to put all the eggs into one basket so to speak. Talk about feeling like a whipper snapper, the next youngest to me here is 69 years old!  This would become clear as to why they really want me in here. I got to bed about 11 and managed to get to sleep. Until James, my 82 year old fellow inmate slipped. Dislocated hip time – body ouch!! He couldn’t reach his bell so he started yelling for the nurses, then anyone. By the time I woke and realised what was happening the nurses had arrived. No one else in the room woke. Love old age sleep anyhow the Doc (a small Asian lady) came in and she proceeded to try to put it back in. No offence lady but you struggled to lift his leg.  Anyway she couldn’t place it in, so went and rang for help. In the meantime James is in agony and the nurses tell him to sit tight – nice call, he’s not about to go dancing in the moon light. 10 mins pass with James in agony and calling for doctors and nurses again. I get up to see him and go and tell them he’s calling again. The doctor is on the phone still. Boy did I do the wrong thing! Stroppy head nurse growls at me for coming down to tell them. Then I get told that he has to wait for the doctor to authorise the pain medication. Almost said for her to prioritise it then. I’m now noticing a clash of personalities here – hhmm. And in no certain terms told to go back to bed, sorry but f you lady! Go back to tell James that help and pain medication is on its way. And it arrives about 2 mins later. A small dose of morphine (remember the morphine -it will near kill me if I have it). He then calls out and asks if I can stay to talk to him and hold his hand. Sure thing, that’ll stick it at the maggoty bitch. So James and I chat and try to laugh, compared cancer notes (as you tend to do on this ward) for the next 30mins. He is really starting to struggle, so just as a guise I say I’ll go and ask the nurses for him. Bad move. Just explain that I’m helping him by yakking to him and that I realise the nurses are busy. And that I’ll tell him they’ll be there soon. Invoke a telling of of new propositions, well I thought at the time it was. I was snapped at for telling them what I was doing and then the mear that fact she only had 3 staff on with 30 patients to care for. I said that’s fine, I’m trying to help so he doesn’t keep calling you, and waking everyone up. I said fine I’ll go to bed and give him the bell -that was the red wrag to the bull for now. I am not allowed to pass someone the nurse bell as I’m not a nurse. They are going to x Ray him so it is going to be longer to wait. Nurse leaves, James asks for me again. I can’t leave him, so over then for more chatting and reassurance. Mind later bitch arrives back with another nurse – Paula. Paula has her hands full with a back board, and James has hold of my hand. Bitch then tried to put morphine into James. I’m trying to get out of way and back to bed. Bitch then goes to pass me the morphine so she can help lift James up. Well,I didn’t take it off her, as I can’t touch it anyway, got growled at big time for trying to apparently take the morphine! Got back to bed finally, with bitch knickers boss I moaning in the background. While James is away getting treatment, Paula gives me my 1 am needs and we have a quick chat while she is taking blood pressure, etc. Paula says she’s normally like that – boss lady so must be mean. Well curtains ripped back, I need you to help now! Paula says yes, as she is just finishing with me. Well OK make it quick was the reply. Now through this journey I have learnt not to judge peoples reactions just on their external appearance,as you just never know what really is going on in their life. But this bitch needs a couple of pegs knocking out and driven through her feet! If you’re having a bad day, don’t take it out on the patients, as they may be having a tad worse day than you especially in Oncology. So now the 3 bits of me are torn between, formal complaint, informal complaint ie. just say something, or do my best to antagonize her into a real screw up. I will think and let you know. But thinking is not easy at the moment. And I really feel like dishing out 1&3 options on her.

James daughter arrives and takes over when he gets back from x Ray. Karen is an Ambo officer and bugger me if bitch isn’t nice as pie to her. I really hate people like this. So hence the meaning behind the saying today. James hip out back in in about 30 seconds, and is a lot happier. Surgeon visits and advises that won’t operate tonight but has to have as look in it tomorrow. So going to try to get entered on surgery schedule for first thing.

This highlights something that seems to be disappearing from our society – the right or willingness to care or show compassion without expecting anything in return. Look at the case in NY of the guy that photographed a man about to get hit by a subway train rather than going to a remote to help him of the lines. The sad thing was that the guy that died was a good Samaritan who got pushed there. Yes life is risky, but if you hear a cry for help do you do anything or are you worried that you’ll get hurt, in trouble, or he’ll maybe you just might stop making someone’s last moments lonely. Thank goodness Mum and Dad, but mainly Mum) for instilling the desire to help into me. From giving pizzas to homeless guys in London, to ignoring a moody bitch to ultimately make her team run better by holding a hand and sharing a kind word. I would like to think someone would do it for someone I know. I’m not asking for random acts of kindness everywhere, but just can we be civil when needed.

I am wide awake anyway due to the steroids, and head is sore – nothing new there. And it is hot still. I have the Windows open to but the breeze is very light so restless. I’ll try another Milo then sleep. Bugger me the bitch is back – she is doing assessment of James pain, and told him she’ll get to where it is hurting not have him saying what hurts. Hang on I’m getting mentioned, bitch has said that I’m not to help – no worries of that. I call it to say I’m not staying up for them, is cause of the drugs and I do a blog cause I’m bloody dying! Revelation bitch knickers – I am not hanging out cause I want too. Stupid cow. hope you read the blog. Also I think that having a formal complaint, won’t hurt her. Fall asleep about 5 finally.

Obs check and meds then at 5:30 and a bit of as chat to Paula (her brother and I went to college together). Get woken then at 8:30amas in overdue for meds. Breakfast is waiting too. Bead move to trying too stuff 13 pills and tablets down your throat at once! Especially with morning mouth,so they all stuck – yuck,then I ran out of water. Not a good way to start the day really. Sue stops by tho say Hello on her way to work.Quiet morning all up as waiting to see the Doctors, and finally convincing them to let me free. Get given the all clear and try to get hold of Dad to collect me. End up having Roh get me – thank you so much Roh. Feel a bit out of sorts today though – not like Tuesday, when I was wobbly. I think I’ve got to have a better way of communicating how when I say I’m wobbly, what it really is going on. Guess my task for the next few days is that to be more clear and descriptive about my state. Mind you the trouble is you can flip from one to another in minutes.

As I said in in a really strange place with everything at the moment, and seeing and talking with the boys and Sue today really made reality slap me hard. They were fantastic, more than I could ever wish for, but seeing me out to it on the floor was hard on them. Helping me to piece together minutes of a day, hard. I had a wonderful memory, and still do, but just to have time go without leaving a mark on the mind is wrong. It’s not like sleeping, but more like when you’ve been knocked out. And yes I’ll now admit that I have finally really being scared by this illness now. One/three little things. That’s it. Bastard,eh.

Walk to the chemist to get my latest lot of supplies – 5 bits of paper in total. I honestly got handed a supermarket bag of meds! No joking -a plastic supermarket bag full of them! Even Nick the most quiet person to ever work in a Chemist was laughing and cracked a joke about it! Trundle my way home. Had too treat out my new full time transport now- my feet! I now have a complete medical ban on all driving. The most I could do is turn the car around on the driveway. Oh well they could’ve said to me that I couldn’t drink as well. Dad comes to visit, and I get whacked with instant fatigue. Have a lay down – I remember it this time Due Wakes me at 6 pm – shit where did those 2 hours go? She has to drop Lachie at school as they are putting on their end of year school performance, then Sue & I are going to meet the work crew for the Xmas dinner. Magenta (lovely niece) has come to hang with Jacob for the day and night, as he is on leave now.  Lachlan show was excellent. Have an enjoyable time and so does he. Drop the kids of at home then head of to dinner. Fantastic,fun evening with all my colleagues and Aaron is there as well. Great to see you again Buddy. Thanks for a fun time folks. Even managed to eat a wee bit too. Get home about 11:30 and relax. Sarah has just finished her shift at the hospital so is picking Jenta up. Have a quick catch up,then they head off. Seems the past few days are catching me up quickly as starting to hurt and feel a bit weaker. But steroids are good and they make me feel awake, so I do the blog for the hungry readers out there being their fix. Well I hope there is someone out there like that. Nice to be home though.

Sorry if the blog is random reading today, it is a bit like my head really. Actually it was composed in several parts over the day, so my brain has just dumped as such. I really hope that all have had a fantastic day and all has gone as good as possibly could for you. Take care. And thank you for the continued messages they are helping me.

Kia Kaha.

“If you want to live a happy life, tie it to a goal, not to people or things.” – Albert Einstein

Hope all woke wanting to get into getting this day done and dusted.  I was – yeah right, from the confines of a bed in the Bone Marrow Transplant Unit (don’t stress it’s nothing different, just a place they could get a bed for me last night as Oncology and Neurology wards were full – which is sad in itself). Not going to cover the usual stuff as it is irrelevant.

So this is how it goes.  I’ll keep it short and simple about yesterday. I’ve got cancer, owe hang on wait you know that already. Brain cancer to be certain, and the brain controls all, simple as that! Now we know why I’m here and blogging it, let’s go…..

I am still missing several hours of yesterday (Tuesday) which is, excuse the pun, doing my head in. They think I have had some form of seizure (not the arms flaying sort) more the drop to sleep type. I remember telling Sue when downstairs I felt wobbly and I only now remember in snippets sort of walking to the ambulance. Sue found me out cold upstairs on the floor between the bed and dresser about 10-15 mins later on. As she was in the room below and never heard a thump as such and no body marks they don’t believe I’ve hit my head going down or dropped you never know it might have fixed some things

The reality is things like this were going to happen. Just never knew how it would manifest itself. Well we do now.  Nothing else to report really. Another day in hospital is just that. Until I know more, I have nothing else to say – except shit and bloody hell it is HOT!!!

So here I am vegging out in a hospital bed with a sore head. Getting fed more drugs than I care to really want, thumping headache still and waiting on meds to work.  I just want to go home! But for all I hate about hospitals can’t fault them here. Everyone is fantastic in all the wards I’ve been on -in 27 now (Oncology) Please don’t be worried about me – I’m fine and on the mend. Also great isn’t it – first ever ride in an ambulance and don’t remember it.

Unfortunately very brief today as I’m having trouble concentrating to write in a logical sense – apologies for that.

Will update if/when,I/we know more.

Hope all have had a fantastic day. One last thing – thanks for all the help and support and messages, they’re keeping me nicely busy

Kia Kaha.

“Those who criticise our generation forget who raised it.” – Unknown

Quick update tonight. I’m in hospital,don’t stress all under control. Basically collapsed and have lost a block of the day. Got my first ever ride in an ambulance though not that I can really remember it.

Thanks to all those that have helped with this little detour. Especially Glenn, Deb and James nextdoor. And thank you Sue, Jacob and Lachlan for holding it together and being so strong to get me the right help quickly.

Will update tomorrow,when I’m certain I will be allowed home.

Kia Kaha.

Beware your thoughts; they become your words.
Beware your words; they become your actions.
Beware your actions; they become your habits.
Beware your habits; they become your nature.
Beware your nature; it becomes your destiny.

Unknown

What a beautiful night to sit up until about 3:30 reading.  Bright moon out the window shining in, warm house and dead silence – even mother nature didn’t let out a rumble to break the peace.  Got lots of reading done – very interesting stuff too.  It is on an American Website about Cancer and brain tumors and how other people that have similar to what I have and are doing the same treatment routine are coping and finding their journey along the way.  Very in depth reading some of it and nice to know in a way that I am not alone with how I’m coping some days.  I really don’t expect you to understand how it feels to know that you are not alone, pursae, on this journey.  I mean I am one person tracking through this, with you all as witnesses, and while I am not alone, as I have you as support, I am alone in what I experience and it is impossible to explain how it really feels.  But with this support group online, we discuss meds (including the wonders and hate of steroids), how it feels and can understand and relate to what has been said, etc.  There are people just starting their journey, god that seems so, so long ago, and those like me nearing the last treatment of Chemo, and left in the void of wonderment as to what then.  It heartened me to see a couple of other people say that exact thing.  But here is my go at the best description of what it is like.  You have had your life journey switched off track, from the normal track of life you were running on.  Along this side track, you have had to run through the dark places with out a light, cross the bridges with rickety beams, and pass the stations of life that no one should have to pass through until their end of days, all with the hope that the destination will eventually end up back where you left from.  The place that friends, colleagues and loved ones left you, and want and hope to see you return too.  The unfortunate bit is for all the want anf hope, the destination is still mortality, and on a new track of life’s journey.  You now have to find where the stations of friends, loved ones and colleagues lives are at now, and make an effort to bring your life to them as much as you want them to be there for you.  There is no welcoming party, pat on the back or well done that would ever really make it right or real.  Don’t misread this as don’t say well done, keep fighting but just understand that I have changed, we have changed and change is what this world is doing – nature, physics, biology – every second we are enduring change and some times it is just really bloody hard work and hurts.  Don’t think I’m brave either as I have no choice as I had mortality put in front of me at 1732 on Friday 30 March in ward 28 of Christchurch Hospital.  When a doctor with tears in her eyes tells you point blank that this is going to kill you – it will take your life, you either implode, get angry, hit walls or things,then stop and go right – I still taking my next breath now and the next so I’m alive now, and that is all I can do from now on – keep taking in each breath with as little thought to if it could be the last.  I hope that any of you ever get to hear that said to you either as a patient, partner, support person or parent.  It still rings very loud in my ears for good and bad – but I try to make for the good and let it drive me on – it may be going to kill me, but at least I know what it is that will

So manage to wake at 6:30 feeling quite awake considering the less than recommended amount of sleep.  Get up, meds, and cuppa tea.  Even mange to eat some breakfast.  Get ready for the day then.  Dad arrives to show off his new wheels, and takes Jacob to school.  Sue, Lachie and I head off and drop Lachie off and we continue to get rid of me too.  Strol into work – quite relaxing.  Have a good day until I realise that I have left my high strenght pain killers at home so call Dad to come and et me to go and collect them.  Wait downstairs for him then get a call that he has had an accident – in the new Jag   Just a nose to tail but still an arse.  One of the other cars involved was a Porsche so an expensive little bang up.  Feel bad for him as he was trying to help me.  Still he was driving not me.  Bernard takes me to get the meds – thanks Bernard.  Back to work then and manage to have some lunch too – so steroids doing well in holding the appetitte.  Get a bit more work done then head off – walking home and have to be there to meet the boys as Sue has to work late today at short notice. 

Pleasant stroll home  – bloody warm though in the sun and manage too clock off 6.5kms.  Get home just as Dad and Jacob arrive home too.  Have a coffee with Dad and he heads off then Lachie arrives home.  I login to work for a bit and try to get sorted what I was working on earlier.   The boys keep themselves entertained by arguing – grrr!!  Here from Sue that she is going to be later so I take 5 mins to throw tea together (Thai Green Curry – easy peasy).  And back to work.  Sue finally gets home and we have dinner – a bit fiery but good still.  Then get head off for a walk.  Bad move the walk – well was going fine at the start.  Get about 1km around the block and wham – pain!!  Extreme pain.  Manage to limp, shuffle home, though very slow.  Bloody pain is start, stop sort.  I hate this bloody cancer bullshit!!  Get home and spend several minutes in a ball on the bedroom floor in agony.  Then get down to the couch and fall asleep for a bit.  Ahh pain my old friend, you’ve been saving yourself for today- you bastard!   I start chemo again tonight an this – well that is the cancer life – walking along admiring the view from the egde and next thing bang, you’re tumbling into oblivion saying to yourself , this is nice – NOT!  Faaarrkkkk!!!  Faaarrrkkk!! Faaarrrk!  Is all I have to say about this.  – Right 9:30 – brief break for Chemo input part one.  New Anti-Nausea drug – tastes funny, but seems to do it’s thing.  Sue heads to bed as her back is buggered and is giving her hell. 

Watch some TV  – what is it with bloody American medical shows and their obcession with Brain tumours and been able to save the world operating on them, and of course thery’re the most difficult ones that could strike.  Yeh – right!! Pain Killers next – good ones.  Then Chemo itself – 5 days to go – I can do it!  Then Panadol to even up things for the night.  There you have it.  Bed about 11pm if I’m lucky and then see what the steriods do to me.   An extended M&D time today.  Hope all have had a great day and relaxing evening.  Take care, and be good.  Will leave it there as sitting here going into a bad head spcae and that’s not good.  Catch ya here tomorrow.

Kia Kaha.

“LEARN from yesterday, LIVE for today, and HOPE for tomorrow.” – Madeline

Well don’t you love starting a new day feeling that it is from your eyes opening, going to be so much better than yesterday?  It is just an awesome feeling – simple as that.  I’ve put yesterday behind me and knowing how I was really feeling, I don’t think the tamed down blog truly reflected or related to my actual state.  Full medals go to Sue, Jacob and Lachlan for their tolerance and understanding of me and the way that they cope when I’m like I was.  I’m difficult as the best of times, but when I get stick in mud mode, it must be unbearable.  I loose sight, probably as I have tried to explain before, as I don’t recognise due to drugs, tumours, fuck knows what, is going on in my head, but I get tunnel vision and driven that that is and will be the only way things will be.  I’m right, that’s it.  Even though today I can sit back and go what the hell, and where the hell is it really coming from?  This attitude, behaviour, stubbornness, etc. Especially when on Friday I was saying how good and right it is to stay easy going and have fun, but then shut out entire days to it, when those days are all too precious to give away to this vial illness!!  I guess I’m saying that I’m prepared to accept that I recognise that I have done wrong, and that I have hurt those around that are trying to care for and love me by letting the dark moments get the controlling interest in me.  Sue, Jacob, Lachie, (and Brad – though you did well to stay low) – I’m sorry guys!  The real bastard of it all is not realising until the next day how bad you’ve been.

And also here is the reason that today is going to be a brilliant day too.  As you know the All Blacks played overnight and even though they lost – I won!!!  I am the top picker in NZ out of 14456 people and won $300 for the cause!!  The prize money isn’t brilliant but it paid a good portion of the BBQ, and will fund a bottle of Goose and Jim Small Batch I’m sure.  Wish they would add another 0 to the prize.

Rugby Tours Grand Prize Winners

First place – $300 – Headless – Yeah Boy/Babe – I’m number bloody ONE!!!  http://rugbytours.jimungo.com/Leaderboards/Default.aspx

Well on to the day – crappy sleep.  Too hot, restless, sore you name it, it was just crappy.  Woke about 5 times and spent about 3-4 hours reading in parts to try to go to sleep again.  Still woke at 8:40 toi find my meds box and a hot cuppa tea besides the bed – thanks guys!  Lay in bed, read and enjoy my cuppa.  Decide about 9:45 it’s to hot to stay there – it is already 26 degrees and dead still.  They reckoned it was goingto be a hot one.  Announce that breakfast will be scrambled eggs, bacon and toast done by me on the new BBQ.  Yep – splashed out and brought a new hooded one – like it.  Dutifully cook a kilo of bacon and scramble up eggs – got to do it properly. And no, that wasn’t all just mine   It’s hit 30 degrees by the time we clean it up – OMG I think I’m going to melt!!!  The wind has thankfully started to come up and it “cools” it ot about 26 again.  Plod around the house do bit and pieces.  The 3 boys head off to Pioneer Pool for a swim.  Mum comes over for a visit and a catch up.  Have a nice time chatting, etc.  She then heads off.

Continue doing little things around the house – sort the garage out a bit more, and do some sweeping up around the house.  Prune some trees.  The day was whizzing by and now it is dragging like a wet week.  Just hard to get really started on doing anything as too hot.  Sit down and try to sort out some more of my PC issues and that whiles away time.  Sue and the boys head off to drop Brad at home.  I continue chilling out and trying to think of things that need to be done around the house – it is one of those little things that gets in your head I guess, where you have that never ending list of needing this screw tightened, or that door adjusted, sorts of things, with having a house, and I am trying to get through them all as they don’t need to be left to be stresses in life once I’m gone.  They are things that I can deal with so I will endeavour to venture into uncharted territory.

The family get home and we have some passes even though Jacob could not look anymore tired than he is – piss hole red eyes, stroppy look, dickhead attitude – oh that’s right he’s a teenager – scrub that he is perfectly fine and normal   Nope both boys exhausted so early to bed.  Jacob only has another 2 1/2 days of school left then on leave until the end of January!  Bloody slack ass schools – he has nearly 9 weeks off!!  Sit down to empty the heads into the blog and try to convey the ways a messed up mind goes on different days.  Seriously – I have cut back my meds ready for the chemo round and if you take out the mess you up steroids, I’d probably be fantastic, but put in the fun side effects of dexamethasone and you have a real messed up man!  Go on Gogle it.  Yes – it is a wondrous drug and I would say I would’ve ended up in hospital this week without it, but it messes you up along the way.  Anyway back to reality. Joh calls for a catch up –  thanks Joh – was good timing as needed to talk.  Hope the pool is filled and ready to use soon.  Deb and Glen come over to visit and have an evening drink, then end up bringing over their crepes to test on us – they are staring up a new business so trying different methods of cooking them and flavours, and fortunately we are one of their lucky test customer bases – thanks guys – bloody awesome!!  Oh and thank you for dinner too ;-).  Have a great evening and get the boys off to bed.  Sit down to watch TV then and finish off the blog.  Then off to a hot bath and bed as shattered from doing bugger all.  Hope that all have shared in a fantastic day and had lots of fun and laughs. And are feeling like – ahh – number 1!  Oh sorry that’s me!!!   Hahaha!!!  Enjoy the day/arvo/evening.  Keep smiling it makes others wonders what you’re been doing.

Kia Kaha.

“A woman’s mind is cleaner than a man’s: She changes it more often.” – Oliver Herford

1st of December – first day of Summer – yeah right – good Tui ad that one.  Summer mornings don’t start on 3 degrees!!!  Still warmed up to be 20.  Ok – warning, tonight is short sweet and blunt.   If your eyes hurt at the thought of seeing nasty words then don’t read on – else see if I’m having you on or not.  So lets get this puppy skinned and boiled for cat food as things to do – Shit sleep – simple as that with bloody bit capitals SHIT sleep.  Kept waking and did the blog late last night which didn’t help.  Bloody  Mother F’n steroids are into their finest stages now.  Have an appetite of a hungry lion and in a nasty evil mood.  Wake to the morning a bit later and bitch about needing to get meds.  Taking a managed approach to them at the moment, and cutting them back to bear essentials before starting that bastard Chemo round on Monday. And I’m to start winding back the steroids form tomorrow too.    So by Monday morning I should be in fine form.  The only saving grace is that I am at home today and so all are safe.  The up coming Chemo though has me torn in many directions so that would explain why I am feeling this way. It seems it was only like yesterday that I was so excited at starting this treatment as it gave me hope and a future of sorts.  Now it is ending and I am feeling lost, sad and happy – now you try to work those 3 f’kers together and stay balanced and sane!!  On 1 hand I am happy I’m finishing the chemo, on the other I’m scare and saddened that it’s ending and I’ll be cut loose so to speak, and on my foot I have the feeling of loss in that I am now on the way to loosing it all.  The days are clicking over quickly.  So excuse the state of mind I’m in if you see me, but quite frankly I couldn’t give a rats arse what you make of it.  Well I do care just it takes a bit of effort.

Get up and go and mow the lawn in case it rains as not looking stunning.  The neighbour looks like they’re trying to sleep in – sucks to be them – I’m up and it is Saturday morning.  Lawns done and do some other things around the house keeping clear of residents.  Can’t explain how I am today but f’ed up feeling is the only term I can think of to say it honestly.  I’m going through a bad day of sulking that I’m dying and watching each day close out, so just need to get over myself, as I don’t know hoe many of these finite ones I have left so need to stop wasting them on wanting the strangle the crap out of someone or have the overwhelming urge to hurt something.  Don’t worry, I would never do that to someone I might know.  That’s why we have strangers, as you don’t care about them and it somehow makes watching them hurt more pleasurable.  And allows you to refine ways to get at people too.  So there you have it, my sadistic side has come out.  I told ya I’m not doing to well today, and the 4 walls of the compound are doing a fine job.

Tolerate a trip to the chemist and supermarket – and it takes a lot of tolerance too.  A’holes a plenty around today.  Get home and catch up on my pain meds – maybe I won’t cut them all back, just the ones I know I can do so safely. Sue and Lachie head out for a a coffee with Judy and Jenna, then return later on. Brad and Jacob stay and play on the PS3, while I sort out some of my computer stuff.   The boys decide to camp out tonight so dig out the tent and Sue assists in putting it up.  Have dinner, boys PS3 some more, I blog, then think about watching a movie, and maybe hitting the bath too, as aching all over – my own bloody fault, enough said.  Dad calls and reports in that he is now in Wellington with his new toy – XK8 Jag convertible – yes Joh he has gone to 5 cars not down too 2 as planned.  I have let him get this one on the proviso that he sells at least 2 of them.  Silly bugger has got a ticket in it already too – slow it down Father!!  Anyway – it was deaf ears those words just fell on I think.  Hope all had a relaxing day and done not a lot or to much   Just looked at the language – not to bad compared to how it was intended to flow out of the head to the keys.  Enjoy what tomorrow brings, cause as yesterdays sings I was the hope of all your things, and today is the present and full of wondrous things, so you should believe in everyday.

Kia Kaha.