3 Too Many

“Stuff your eyes with wonder, live as if you’d drop dead in ten seconds. See the world. It’s more fantastic than any dream made or paid for in factories.” – Ray Bradbury

Sorry about yesterday’s ramble folk. It probably didn’t make a lot of sense really, . But that was due to several factors – New drugs, seems the decisive effect these have on me are very good, then that combined with the tumors effects of Absence seizures, a warm evening, and been in extreme pain basically adds to only one real out come – a mess!! I also some times start to do bits of the blog early – such as this bit where it is 5 am and I feel I need to and can get some of the overnight stuff done already as I have a busy day ahead.

So odd sleep really. Had my new magic drug again about mid night as I wasn’t really sleeping/sleepy. I can have it about 3 times a day.  I will explain more about it soon as I think it really deserves its own space. But all up close to 5 hours broken sleep which means I’m feeling brilliant in my health terms.pain has subsided for now, (hate when it hits like last night at the pub) – just barges in without a care and ruins your night. Thanks Fish for dropping me home – just in t the nick of time really. I had been explaining to some of the lads last night about the pain and how it’s not just head (as my brain is selling constantly and that’s why I am on the steroids) but the cruel bit is the body pain. Not just localised either, but the complete works, . Hence I take 4 different pain killers just to get through 4-5 hours per day. I have also now clearly gone from Palliative Chemo (manage to make me comfortable and by time through a structured treatment plan) to just palliative care (manage to keep me comfortable while waiting for the effects to push through more and work on suppressing those pains) with a small side benefit of getting some quality and a wee bit longer. So back to sleep, well it happened in small chunks more last night than the usual little 10 minute nibble that I was getting. I still woke twice with night terrors (sleeping panic attacks for want of a better word or description). I have dreams that are so vivid that I would swear that the people/things happening our in them are real. Most of mine involve been suffocated by the sheets and I have physically ripped these off the bed several times. There is the other mare too of having the insects (imaginary of course) count 1,2,3 and jump all over my legs at once which they think is funny. Little bastards  I do realize that are all in my head too before you to concerned that I need another drink or locking up.

Right magic drug time. This is a formula that Nurse Maude came up with too help Palliative care patients with anxiety relax and core better. All I say is it works!! I had not really realised just how low mentally, emotionally, physically and spiritually I had sunk after getting the Chemo dropped, having a seizure, MRI maybe not showing the best ending up in hospital (basically all the shit from Tuesday 4 December) landing on me in one day. In I think there was a huge hangover still from earlier in the year. Well within 15 minutes of taking magic liquid I felt like my old self (watch out world) from before March! I could think, according too the family I was smiling, having a joke like old times, not angry. Apparently calm and mellow very relaxed, etc. I just felt and even now feel so wonderfully brilliant! It is just sad that it has taken 9 months to get to it. So for me getting this drug I really only have 2 things to thank – the understaffed Oncology ward at the hospital and therefore having Nurse Sharron from intensive care unit fill in as my nurse in the day.

Her and I had several Frank decisions around what I’m dealing with, support services, etc as she was wanting took move out of ICU to work in Oncology as that interested her more. And within all her dealing with me she discovered that I had at no time had contact from the Palliative Care team. Now usually they are brought in very late in the peace, when (remember this if you ever end up dealing with cancer or someone that has cancer) get them on board early. Even as background advises occasionally but make sure they are there. Look what I have now got from it – some sort of my old self and life back, and with time to spare and best of all time to share with you all. Honestly, this med is awesome!  It lifted the fog over me in seconds, and where I was struggling to make a decision it allowed me clarity immediately. Now I realise it is only day 1 so will give it a week and I will give another report of it.

Up and on with the day. The boys are of to spend the day at Craig’s business labelling pallets going out our something. Which is good as they are in a cool store and it is meant to get to 29 degrees today. So I’m off to work, and Sue is in court. I feel it is going to be a good day already.  Busy at work. We head out to have lunch with Debbie (our old boss), and Michael and Aaron and have a catch up with them at the new Old Ballies bar which used to be besides The Press in Cathedral Square.  Nice time had by all. Head home about 3 pm as fading still. Guess the new drug doesn’t cover everything. Decide to take some time to rest up as feeling flattened.

Family get home and we had to Pam and Karl’s for dinner.  Catch up with Nevil, Rose, Jenny and David out there too. Nevil and Rose are visiting too.  Good evening, though I am really struggling with fatigue and spend more time out cold in the TV room with the boys than with the adults.  Out cold all the way home too, and manage to come too enough to say good night to the lads, put the blog up and then take meds oh and sleep! Oh and M&D time. Hope all have had a brilliant day/arvo/evening and are ready for the Xmas wind up our down what ever easy it works for you.  Take care.

Kia Kaha.

 “I’ve learned that our background and circumstances may have influenced who we are, but we are responsible for who we become.” – Facebook

Interesting – I am in such a messed state that I actually started to write something for the blog this morning, but having read it, it will not be published as It simply makes nonsense.  Wow the drugs must work   There was some other text written here but in one of newly identified seizures, it has been deleted – honest!!! 

 

Crap sleep anyway only a couple of hours really so nothing to report there.  Still waking with night terrors and suffocation feelings, which isn’t fun.  Though this may change today yet.  See I have an appointment with the Doctor today to get a new med which is meant to help with anxiety, etc.  Doc goes well and the recipe for the new med is sent too the chemist – yep old style here and they have to make from scratch. 

 

Head into work as it is Ham day (the day the company puts on Xmas ham and bread, etc.  Good day – though busy.  Have to head off home early as Lachie has a Dentist appointment.  I keep trying to fix and issue from the night before.  Not in a great head space and not coping well.  Sue returns with the new drugs and decide to give it a test.  Awesome!!!!   How bloody wonderful.  Within about 15 minutes of taking it I am feeling the best that I have in months!!  Honestly  – months.  Long may it continue.  Fish turns up to take me to the Vicergae.

 

Have a good evening catching up until I break down.  Pain – just writhing pain shoots through your body and Fish then drops me home.  Fighting the Absensce Siezures is hard as I miss M&D time, delete some of the blog, and pain.  Sick of this.  Well at least I have the new meds to rescue me I hope, so fingers crossed for a better evening rest is expected.  Sorry for the chop and change blog today, but not going very well.  Hope all have had a great day.  Take care.

 

Kia Kaha.

“In the end, it’s not going to matter how many breaths you took, but how many moments took your breath away” – Shing Xiong

 Yep – no sleep really to report so we won’t go there.  Was up sorting out a work issue that I had forgotten about anyway until late but that’s OK.  Can’t sleep anyway.  Jacob had a revelation last night that Dad can’t sleep and doesn’t have a normal sleep pattern, as he was that hot last night that he wanted to stay up with me until I went to bed.  Poor bugger nearly was in tears when he realised that I was going to be up for about another 4-5 hours yet.  Put him back to bed and he managed to settle down well.  Up at 5:30am, have brekkie, cuppa tea, meds and read the paper.  Decide that I shoudl go back to bed to try to rest some more.  So head upstairs again and manage to doze off for about half an hour, only to wake in tears.  Now that is something I haven’t really had for a while, but feeling like roadkill today and well flatteened and runover!  Emotionally there is a lot at the top of the pot today and it will end up boiling over.  Get up and get on with the day.  Feeling sad too! 

Boys get up and I make the call that we are heading into the office today as I need to be on the system to make some changes more easily.  Show Lachie the fun walking route along the edge of the Red Zone, and he is loving it, esp. when we walk past the tank – yep there is an army tank on the corner of Colombo and Gloucester Streets.  It is part of a fund raising activity for the Salvation Army Xmas lunch fund  (I think ).  Get in the office.  Nice to see lots of smiling faces and happy folk.  Have a great day workwise.  Health wise I am fighting fatigue, and flutuating energy levels.  It makes it very hard to deal with really.  Hate days like this.  Sue rescues us about 1:15 as I have an appointment with Nurse Maude. 

The 2 Nurse Maude nurses arrive and it turns out that it is not the Physio to sort out the walker, it is the District Nurse and the Pallative Care Nurse.  Spend sometime going over the current status of myself and my meds.  End up with a doctor appointment for first thing in the morning, another new med to test out which should, all going to plan ensure that I am more settled and really cross all limbs here it can help me sleep and establish a normal non-anxious pattern of rest.  Watch this space!  Struggling with the head switching modes so much still.  It turns out that the drifting off type seizures hat I am having are just that, seizures and have a name – absences (or absence seizures). 

The nurses head off and I start to get dinner ready while Sue takes the car in for a service.  She returns home just before the boys (they’ve been to Pioneer Pool).  We have dinner and then head off to Riccarton to finish the Xmas shopping – yes all done even with the crowds!!!  Get home, boys to bed, and blog time.  Might even wrap the last of the pressies to completely get  Xmas 2012 ready to be done.  June calls and chats with Sue while I get the blog done.  Really, really, struggling now, so will sign off soon and head haha – to bed.  M&D time and over with.  Hope all have had a fantastic day with loads of fun.  Take care all.

Kia Kaha.

“I laugh, I love, I hope, I try, I hurt, I need, I fear, I cry. And I know you do the same things too, So we’re really not that different, me and you.” – Colin Raye

Amazing the difference that 4 hours sleep can do.  A straight through sleep that is too.  Victory!! It doesn’t meant that I wake feeling like a box of fluffies though.  Just feel ok.  It is a very slow start to the day.  And early at 6am.  Mild and still morning so go outside to get the paper and take in some of the early morning serenity   Meds and a cuppa tea and some quick breakfast.  On a new drug regimen now to try to balance the day out with all the meds (take 34 pills a day now – mostly pain killers and ones to ensure that I don’t do the funky chicken to soon.  Results are already starting to take effect – I feel nauseous !!  Bloody hell – a day like this again.  Get ready to face the day and even, while having an even keel, I shave my head.  Risky manoeuvre but got to try.  Make it 90% of the way with out peeling my head to bad so happy about that.  Let work know that I’m based at the home office today as I can’t handle leaving the safety of the white bowl to much with the illness I’m feeling at the moment.

Busy morning getting on with some work that needs doing.  OMG it is getting hot – 10am and 28 degrees already.  The boys keep busy doing housework and keeping out of my hair.  I do some quick research  and see that the Warehouse have pools on special so a quick call secures a cheap one.  Try to call Dad to organise for him to collect but no joy so the boys and I head off.  It is only 30 degrees, a 20kg box and a 2.5km – I can do it!  And the nausea is at a low again, so we plan like an expedition – meds all topped up, food input done, water intake done, Sunscreen on – and we’re off!  Make it in near record time to Barrington – share the plan of attack with the boys  and all goes smoothly (pick up some meat for dinner, and meds as well).  Dad passes us as we are just about the at the destination.  He doesn’t see us and won’t answer his phone ringing.  Get the pool from the Warehouse (last one) – and run into Dad as I’m walking out.  Talk about good timing. Actually more luck than anything.  I ask where his phone is and it’s at home as he has someone else’s.  remind him that he is my number 2 backup person if I have a turn or need someone urgently – yep he knows – he’ll know when he needs me apparently – ahh!!!   Load all the stuff in his car and go and have a ice cream.  Must of looked funny as 3 generations of lads standing there in the middle of a mall all chilling out on thick shakes and ice sundaes.  Dad heads off to drop off the stuff at home – thank goodness he does, as I know I would have made it but it would have been a slow journey.  Us boys then head off by foot (Dad has his ute so we can’t go with him).  Home to more work, and the Lachie takes on the pool assembly, I take on more work and Jacob takes on more housework – he now mops the floors, then hand scrubs them, then bloody hand dries them – talk about the one whom has got his old man’s OCD disorders!

Sue gets home an and Jacob cooks dinner and manages to find time to play a couple of ball games.  He is busy wee beaver!!  I start getting head pain quite bad so sit down and of course the tumours take this as their lead and induce unconsciousness on me.  It manages to go on for nearly an hour, though I do manage to come round for that.  Sue heads off to finish last minute shopping, the boys test out the new pool – the water is probably 15 degrees, bit its still 27 degrees outside.  They have a ball so nice to savour the moment and watch them enjoy it.

Tomorrow I have Nurse Maude visit, well their physio as they have to do an stability assessment on me and assess the house.  And chances are issue me with my walker.  And don’t worry Anna – Lachie would love Green but I’m with you  funky colour.  It is more for stability as I am now falling sideways about 6-12 times a day.  Now I am reluctant about getting a walker not for pride, hell I’ll put the grey brain cancer ribbon on it and pimp that bad boy!!  The reluctance comes from a physical and visual sense that yet another aspect of my life is getting eroded by these unseen MoFo’s that I am now fighting against on a daily basis in an unseen way.  All along it has been a battle of conscious will over these things.  Since 8 March this year I knew something wasn’t right and drove home from Dunedin with a gut feeling that bad things were on the way.  I put it down to the Botox treatment I had just had, but you know the niggling voice saying something isn’t right well – something was very wrong in fact.  One of the tumours had invaded enough of my good brain tissue to cause Bells Palsy type symptoms – in a way thank god they did!!  If not then this blog would not be here now.  There point blank – without the treatment and battle over the the past 9 months I would be dead now.  That is as close for the near term as I care to go, but unfortunately daily living for me brings about a full circle and I am again getting Bells Palsy type effects and loosing balance and everyday something else little it installs and triggers that little more fear in you that tomorrow is not going to be the same ever again.  While close they are never ever the same.  Pride has a place on the battlefield but conceding of advancement of leading to defeat has its place in war.  So those that know me – yes pride will be in there trying to stop the walker, but it is more about me not wanting to give my life in easily.  I hope this makes sense as it is the very real side of this.  I am dying and loosing bits everyday – memory, physical activity, mobility, pain increases, it is all real, and I wish that I could wake up one day and it be gone but I’m going to only wake up and be taken or put into care and we know where to from there.  That is how it is really.

Sue returns from the shopping, a wee bit more shopping done. I finish the blog, M&D time – sorry it’s late.  And if you want soem reading to end the day/arvo/evening, then here is a man David that told me the mantra of dealing with Cancer should be “You will define this cancer, not this Cancer will define me”.  He used to work with Sue in Invers and was diagnosed not long after me.  http://www.stuff.co.nz/southland-times/culture/7988592/Where-theres-a-will-to-live-theres-a-way

Hope all have had a fun day and not melted down to much – 10:30 at night and still 23 degrees – like summers of old now.  I hope to catch up on the comments of the past few days soon, sorry a bit slack.

Kia Kaha.

 “Truth is, everyone is going to hurt you you just gotta find the ones worth suffering for.“ – Bob Marley

 I’ve now decided that sleep and I are distant strangers again. And while I was granted a couple of hours “rest” on Saturday night, it just isn’t enough to get you through a day. The other trouble is still trying to pick out what is sleep and what really is seizures. It just so really pissess me off see I can be there in the moment then, gone. Honest out is that quick! Then within that there is the fact I can still hear process and function. Then the other timeout I have where slightly longer and wham everything gone for all money. And the frequency it’s happening? Well give you an idea, I have gone out at least 6 times since starting to write this! This is what scares me so much. The mirror incidents – yes it was 2 mirrors all up so 14 years bad luck (add it to the bill) and a glass, but anyway, how long before the injury comes with it – shaving slices a side? They warned me to cross roads only at crossing points, be careful swimming, etc – you know the basics you give a 10 year old not a 45 year old man! I thought they were joking. I’m not laughing.

 

On top of this I am having a terrible time with balance and reflexes. There is talk of getting a walking frame to assist me on bad days. Do you know what that is like to even try to process in your mind? I can stand and I can walk I just get ‘wobbly’ some times. And as for the breathlessness, that is yet another kettle of fish. I guess what I am trying to get to is that yep I pack the sulks as good as anyone, be short and very aggressive, and say or do things that are immature and while I can blame tumors, it is not an excuse no more so than having it pinned out or slammed back at me, can we try to achieve a mellow ground to live upon. If you can’t handle what is happening to me then don’t read the blog. You’ll find out on the wind when I get to write my last one. I need to focus my life now on achieving all I can for those that are left covering this new path on this messed up journey. Everyday I am learning something new about me – every bloody day. Feel free to join the journey of what I do learn some times – it can be interesting. This is a general message for you all as something that becomes very evident as the journey goes (and I was told this by several people at the start that those you think are the closet to you and understand you will be the ones who dig deepest into your heart as that can’t handle it).  I have so far lost a lot, more than I care to measure, and from this point on I will no longer be wasting energy on saving my losses as they will be taken wrong. For you folk that will be stopping reading the blog (not that I want you too) – ” Live in peace with a full heart”

 

Now those that want to blog on. Just lets say not even a crap sleep – just no sleep so feeling a little fragile today!!!  OK?!?!?! So nothing new there. I have had about 3 hours sleep in days days to be truthful.  Up at 5am, funny when I last remember looking at a clock at 4:30am going to sleep.  Not too early and meds and a cuppa tea go down as usual. Help Sue get moving as her back is causing agony too, – just not fair this pain that is getting dealt out.  It’s going to be a warm day so no point missing out (already going to miss enough dropping on and off washing done and out. Chores to tackle around the house – yay get a chance to annoy a couple of teenagers! Oh vengeance is sweet.  Actually the whole house is sleeping in except me, so I just shuffle on in silence.  Only one engagement today, and that is Murray and Elaine or old neighbors are stopping by about 2 pm so will be fantastic to see them.  The family get up and get ready for the day.  No stupid acts today after the shower like yesterday, where I was that messed up that I got out of the shower didn’t dry (cause I thought I had already done that!) and put on my moisturiser (yes – I wear it – and???) and deodorant then went – shit, dumb ass! Yep life is really interesting with me at the moment. An adventure in every hour. So watch out work – less than 24 hours too gain your sanity before I ruin you again   Then get ready for the day. Decide to head to Riccarton House market for a look for last minute Xmas gifts. Find no gifts but go for a walk through the bush sacnutury for tghe Kiwi – amazing a Kiwi encloursue in the middle of suburbia).   Had a brilliant walk – slow  but fun.  Goodness it is getting hot!!  Midday and already 28 degrees.

 

I had a read about a wee fella 5 year-old (brain as well – son of a guy I went to high school with actually) – Lachie Sutherland.  He head spent some of Saturday at the beach having a ball as he has just finished another round of treatment. What a real trooper! Chris – hope you don’t mind, but the fight that Lachie has and puts into effect gives me energy to regroup for my battles. I ache about the house moaning because my body hurts, but he is running around the beach carefree lines in still – so what. It shows that to be an adult and to let that child inside out can be such a good thing. I will now take a leaf from the Lachie Sutherland school of cancer fighting! Hope the treatment keeps working and keep up the fight.  It gets tough – really I do know.

 

Muck aground getting through the day. Try to convince the boys to give me a haircut and not a slashing but takes some effort and they don’t do it.  Very criusy day altogether. Fantastic too see Murray & Elaine again. Both are looking very healthy and happy.   Cook dinner then intend to blog it out, but rest for 3 hours and then  bed time already for the night demons to come to visit. Oh well, just another messed up day in my messed up life. Really hope that all have had a brilliant time and loads of fun today. Thinking of you all always. Thank you for all the incredible awesome support. I can’t ask for any better. Keep cool till after school.

 

Kia Kaha.

“Whoever said winning isn’t everything, never had to fight cancer.” – Unknown.

 What is it that people are scared of?  I have an illness not a fatal contagious diesease, yet soem time I feel like a lapper made to stay that safe distance from the public – just in case.  It is still me here, slightly more blown up again (thanks steroids).  I think feel and live just the same as before so why treat me different?  I can’t answer that and can only try to think what would cause a different recaction.  Anyway, with no more treatment, and only my fight left then they may get their self discovery moment sooner than they wantr, and I really hope you feel better and self satisfied.  OK – enough bitiching.

New trick from the body – suffocate!  Yep stop breathing and gag and gasp for air.  To the point I was ripping away imaginary sheets from around my neck as they were, I though choking me. But it is not just during the night, it is now happening during the day too. It is freaking me out big time and scaring the hell out of me.  No sleep in today even though I really feel like one.  Up at 6:15 cup of tea, meds, then hang on – doze off again until about 7:40 – fantastic.  Lay around in bed until about 9am then decide to get on with the day.  Dad stops over – one car sold – yay!  Down to 4 now.  Head off then to do some chores and runnning around.  One of them is to get a new bathroom mirror for the downstairs mirror – well that was a smashing shopping experience!  No, really it was a smashing one!  I lifted out the mirror we wanted then saw the mirror next to it start to slide – went to stop it then wham!!  The cheap $75 mirror I had survived with a broken corener the $250 fancy one next to took the fall for the others.  It just missed Jacob thankfully, else,  it would’ve been far worse.  Staff came flying from all directions – all cleaned up and we were sent on the way with an intact mirror.  So, sorry Smiths Mitre10  – it was shelves stacking not Wilson going rouge that did it.

Home, lunch, then put mirror up and the brain is in very slow mode so takes aggggeeeessss!!!!!  Taking my time to make sure it is straight and dead right.  Quiet night in as Brad and Gemma are staying tonight.  Have dinner, do blog, and chill out.  Manage to break a drinking glass as well so on a run tonight.  Don’t think I’ll risk cutting my hair for some reason   I also wonder if I will get graced with some sleep tonight.  Hope Saturday has smashed by for all of you too with no casualties.  Take care and enjoy Sunday when we get there.

Kia Kaha.

“My life is my message.” – Ghandi

 Life is going through many different daily changes/challenges lately.  I think would be an open statement about me anyway.  I have looked back over tghe previous blogs and just how bloody random they are and how sulky, moody, and everything else as well.  Well guess what!  My bloody blog, my messed up life = my bloody way!  Don’t like it lump it   The past month but particularly the past 1 – 1/2 weeks has been hell.  I thought that I had toughed out the hard at the beginning of the journey.  If anyone could have honestly said to me back in March harden up Princess this is easy I probably would’ve hit them.  For those out there facing mortaliy – firstly get to grips with it – shake it really hard, then kick the hell out of it.  Go on do it – cause the bastard will be back for more.  Our mortality is what makes us and is what we will be measured against in the end.  So becareful how well you make your morality.

I have been reduced to sleeplessness, talking (and f’me making cups of tea) with Dead people.  I am every minute of the day fighting with the tumours effect, and fighting with in myself (mental and emotional) trying to lay a bed of even living foir which others can join me along the way.  Now this all sounds odd in itself, but I’ll try to give a breakdown of an average day so far.  Wake about 4am hot drinks need top be made – well in the head they do anyway, as I am entertain guests.  But usually I need to get a drink anyway as dry mouth is just another little side effect they overlook to tell you.  Back to bed, usually in a foul temper as you’ve been awaken from possibly thye best sleep of the night.  Doze on and off then till about 6 wheh you’re up to start taking meds and make a cup of tea or coffee for real this time.  Pain is rackign through the body by now too, but as it is normal there is no point in mentioning it. This pain is caused by the tumors.  I am no longer on nor will doing anymore Chemotheraphy.  I finished that last week whehn I had the seizure on Tuesday.  I happened to have had an MRI scan that day and while we are awiting still, the tumors have shown signs of change in size /shape which is not what they wanted to see.  As such it was decided that I will not be completing the treatment as planned as there is no benefit ot doing it.  This was and is still a massive kick in the guts that I am and are still trying to put behind me.  It took me so much effort to get myself in the right frame of mind to take on the last round and then one simple siezure ad it changes it all, oh and to throw in there a btw, the tumors are up to no good again means that reality well gets – very real!!!

So off the Chemo, on to pallative pain care – yep next step stuff.  Don’t stress, it means that they have a better watch and control on me to ensure that I don;t suffer to much.  Also it’ll mean that I have better access to better health and homecare.  My bablance is giving me hell too.  I get weak from the core then just topple over – funny to watch really.  I also have slurring again when tired, and drop out like a light been switched.  But there is 2 states to this – 1 when I’m still ablt ot talk & process and 2. when I go out and can’t recall without a little prompting.  They are minor form of siezures and while not damaging they make it not nice when trying to talk to or deal with people.  Life is not easy fullstop.  But I don’t want symathy I want and need understanding.  So once again and finally I will applogise for the last time if I have or will piss you off through some stupid behaviour of mine. But so you know that it is not a piss take what is happening, my head is shreaded!! I have slices – not grazes, out of my head from passing through conciousnous while shaving.  It is really f’ed up if you think of it.  A simple act of having a shave is now a dangerous activity.

I am working from home today to as need the head space too be able to get myself to the next level of my life.  Sue and I have too decided that the C word is to much of a soul destroying dominiant force and word in this house and our world that we will not be shutting it out, just putting it back in the small box that belongs.  We accept it is going to take me from you.  It is a living, fast growing force, and it will do as it pleases but it needs less attention than it gets given as it is going to destroy what time is left.

So on with the day.  Walk off to Barrington to get my scripts that I need to keep going and then onwards to Lachie’s school as they break-up at 12:30, and this is the last time for Lachie at this school, as he starts at College next year.  Manage the 7km trip in 29 degrees – my goodness it was bloody hot!!!  It is just the sort of day for frying the brain and clearing the air in the head.   Thanks to the staff at Scared Heart Addington for keeping an eye on Lachie over the past few months.  Esp, Frank – you are a good mate man – thank you and enjoy your holiday.  Merry Chrsitmas to you and your family too.

As a surprise Lachie gets to choose lunch – no guesses McDonalds.  Sue meets us there and we have a full on lunch (thanks Steroids).  Get dropped home and Sue goes to get Jacob from Brads and then home.  I struggle to keep on with the day, but do just.  We head off to do the shopping as SUe is reluctant to want to leave me alone as I am starting to get very wobbly on my feet.  Manage to get through the shoppingthen head off to Lachie’s indoor football.  Catch up with Bee whom is friends of our’s and I used to flat with in London 20 years ago – shit!!!  Good game and they win 7-2. 

Head home and have a great impromtu evening entertaining.  Deb and Glen stop by just as I’m about to dose off – sorry guys   Then Roh and the girls turn up, then Jo, Tony and Amiee turn up.  Fire up the BBQ and  have a social evening catching up and enjoying past times.  It is a perfect way to end the week, and I am struggling, but it has given me a short term goal, so can manage it well.  Everyone heads off about 10pm which is great as I can hardly actually do anything, except M&D time.  So bottoms up.  I really, really hope that you have all had a fantastic day.  Aubery – special mention for you tonight too – if there was ever an inch perfect well neeeded and timed pass then you sending that txt to me when you did was it  – It lifted me perfectly.  Thank you mate – you are a legend.

Kia Kaha.

“We need the dark places to show us the light no matter how dim is always there.“

Happy Birthday Susan!! Hope you have an awesomely wonderful day getting spoilt rotten.

How sad that this is what my life has become! Talking to dead people, well making cups of tea for them anyway.it seems that the new drugs are messing why New big time, and also the tumors are having there wicked way with me. Oh and don’t forget the steroids having their piece of me. The new drugs seem to be mellowing me out before bed and keeping me awake. Then when I do manage to get into the sleep zone, I am then treated to the asteroid effects so are waking with the head that’s is messed up with. During the waking hours I am subjected to random sleep/blackout spells which I don’t usually even know it’s happening to me. I just go out to it like a light so sorry if I go of when talking to you, I honestly don’t know where to start to explain what it’s like having this happen to you. My head it’s sliced and diced too as when I was shaving my ugly bald head yesterday it is not advisable to have either tremors or this passing out thing as the blades still cut deeply and very well when you shudder or jolt. So I think the boys will get to be on head shaving duty from now on. I did that we’ll enough that Jacob panicked when he saw me as I had that much blood pooled around my neck that he thought I had did something serious to myself.

It is going to be a short ramble today though as I’ve done nothing except fight the drop of monster all day. Started the day with presents and cards,for Sue. Then up and into the day. Having a better day than yesterday thank goodness. Good but very restless morning at work then head of at 12:15 as I have an appointment at 12:30. All goes well and get home. Resist the urge to sleep and keep plodding through the day. Mum pays a visit and has a great catch up. Cook a simple dinner as that is all that is asked for so oblige.

Jenny comes over for a visit and a catch up. Sorry I missed you Jen, sleep monster has the better of me. Wake about 9:30 then and needing to sleep more. Rattle out a quick blog as there is nothing to really report. So M&D time – 9 drugs today. Then bed. Hope all have had a great day and loads of fun. Take care all.

Kia Kaha.

“The most sacred place dwells within our heart, where dreams are born and secrets sleep, a mystical refuge of darkness and light, fear and conquest, adventure and discovery, challenge and transformation. Our heart speaks for our soul every moment while we are alive. Listen… as the whispering beat repeats: be…gin, be…gin, be…gin. It’s really that simple. Just begin… again.” – Royce Addington

New drugs – interesting.  Take them and about an hour before bed as suggested and start to mellow out and feel good, in a good way.  I feel even and can start to think straight.  Wow, like these to start with.  Get to 1am and still feeling mellow and level – so ah, hhmm – where is the sleep?  They are sleeping tablets after all.  Or once again I have converted the drugs into waking me up not shutting me down – it does happen and more often than you think.  Manage to finally close eyes about 1:30 ish after having an hour long battle over pain, etc.  The dreams and behaviour that then ensued afterI did start to rest was nothing short of bizarre.  I walked in the Dark Places last night with several people, including some whom aren’t dead.

Now normally I would not be even contimplating taking you here with me, but just to show that it is not all bad and evil and what may be percevied whe I mention it.  This may all seem wild, hippy, drug induced rambling but please think about it for a bit.  I was in the company of my mother-in-law (whom has passed) , an Auntie (that has passed), but also a couple of people including one called Asher (whom where very much alive).  Now there are soem folk going – whack pot.  But I felt at the most peace inside that I have in a while.  As I seem to have lost real touch of my mental tracking or reasoning ability, it is a sarene feeling to be like this.  I have realised that I have walked to many paths throwing matches at all the bridges that I can burn then stand there asking myself why.  I need these bridges to even the little friendships left and are finding it hurts more when you are left to watch it burn out of misunderstanding or spite.  Either way,  please tolerate me, whatever me it is you come across.  If yo can’t then, thank you for been my friend and sharing in part of my life with me.  I hope that you have a totally enjoyable life and wish the best for you.  See you on the dark side sometimes.  It is not a bad place at all.  Full marks to the family for standing  up to my night roaming going on last night – I don’t know how manay times that I woke and got out of bed went for a walk for no reason, or went looking for the hot drinks I had made in the correct  puzzle order they had to be done, at 4 this morning.  I knew there was nothing there, but my brain didn’t.

Get ready for the day.  I am staying put at the home offie today for safety and sanity. It takes about 20 mins to write an email saying I’m not going in the office today as I keep falling asleep. at random.  Jacob still thinks it is hulerious – bloody toad. Still couldn’t be in  better company really.  I’m blaming it on the 6 vials of blood they sucked out of me yesterday foir testing.  You would think for all the literage that I have given them in the past 9 months that they would have enough by now – teasing   Morning is a mix of sleep, unconciousnous, wake, wander aimlessly, then start again.  Jacob and I head off to Barrington to get some stuff for lunch.  A pleasnt stroll, as can’t move to quickly.  Sue goes to her back specialist appointment, then gets home and we head off to see Tony K as it is his 50th today – Happy Birthday Tony.  The party started at 12:12pm on 12/12/12 This is the last time ever that humans will see the date as a polandratic format.  Enjoy the special moment as it will be gone in a second.

Head home not to late (even can’t handle a social environment as the seizure napping impacts to much)  That is what kills me the most – I just can’t plan or do anything – it really, really rips my nighty so to speak!!!!  Hope the day has been productiove and positive for you.  If you find yourself in the dark places come to my haven and walk for a while – it will be nice.  Be good, be good at it.  Take care and till tomorrow – see ya.

Kia Kaha.

“A man is born alone and dies alone; and he experiences the good and bad consequences of his karma alone; and he goes alone to hell or the Supreme abode.” – Chanak

OK, back to a blog format of old maybe – not sure.  But talk about a crappy, shitty non had restless sleep.  I think I managed to get maybe a long stretch of 1 1/2 – 2 hours in and about 4 hours total.  I just could not stay asleep last night.  I am just in such a horrible place mentally too, so maybe it is just punishment for the soul, to be drawn through the waking days in such away.  The pains are back too – mainly body but, everywhere at times still.  Bloody hell – for all the shit I have to go through still now, this is the new normal.  It is a week today since my little ambulance trip too.  How time flies when you’re having fun – not.  Get ready for the day and we head off to work.  Jacob with me again, as all this and last week.  He is a great helper. 

Have an interesting morning fighting off pain.  Bernard and I go for a walk to restart to see if that helps me, and it does.  Thanks Bernard.  Worked well.  Got the pain killers going through the body.  In a messed up state in the head though.   Really messed up state.  Make it through the morning then Sue collects us at 1:15 and we head for Lachies Orthodontic appointment, then to get me  a blood test, and pickup scripts.  Finally get home and I am fading fast, finding it hard to think, or really even function. Now when I say this I am talking all over. I just can’t make a straight decision, ask me what colour a tyre is and I’d tell you green, if the world is round, it would be, not on my shift, its square that sort of thing.  I am angry, though today not as deeply angry as I have been the past couple of days.  In a way it is surprising I have anyone wanting to be near to me.

I thought that I had gone to all the places that I could have gone when I was first diagnosed, but it seems not.  I am now at a new precipice in life high’s and lows.  It is now that I am really calling into myslef asking why me, what did I do now to make the f’n clock pick up speed?  How can I slow it down again.  Do I just let it happen or do I have to fight dirty against the MoFo’s just to keep my dignity.  They mess with me daily too.  Not  justy mentally but also physically.  I am unsteady on my feet a lot.  In that, I will topple from the waist up not knee down as they expect.  There is talk of needing my walking stick full time now, and possibly getting a walking frame / wheel chair.  Just letting you know in case it happens, they won’t be show stopping shocks really.  I don’t like the idea but if it means that I can safely get around then so be it.  I just don’t know how or where to begin to let you really understand what it is like for me trpped inside this body with these things messing at their free will.  That is how you feel – helpless.  Totally helpless.  Why -what did I really do?  I am facing my mort5ality yet again – once is more than enough for any person, why do I have to do it twice?  I am sick of sheding tears, anger, rage, hate, fear, saddness, thankfully small pockets of happiness.  I fear the night closing in too, as it means that my mind awakens and I start getting drawn into the dark places that shouldn’t be visitied.  I don’t sleep I walk the night in my mind looking at life from new angles, places and areas.  I would like to face the night with the prospect of rest, peace and joy in waking relaxed and ready to face down another day.  I’m not sure really why I am telling you this as it is not a place or way that you should be living either, and would not understand unless you are facing your mortality.  So we will leave it there.   

Walk up to the video store to drop off an overdue movie, and get home needing to crash out as I can’t keep going at all.  Manage to get in just over a half an hour rest and wake feeling a bit better, but the mood is not quiet there yet so maybe pay to stay clear of me still for safety.  Have dinner and do the blog as I can’t face it at night anymore.  Relax watching TV, and have a bath and try my other new drugs to see if they will put me to sleep without feeling overly grotty.  I so deperately need to rest and sleep – please!!!!  Just 1 night!!  Hope all have had a good day and not to many deamons to face.  Take care. 

Kia Kaha.