3 Too Many

Day 20 of 28 Treatment Free.

As I was saying on Friday’s ramble – the head is not in a good place / space and when I go to bed I am not switching off again.  But this time I think it is more because of the where I feel I am with things.  I am actually – if this makes sense – missing myself, my old self that is.  I know it is a bit of a deep sort of thing to get into, or probably understand, but as I am a week before starting the next round of chemo I am back at the beginning to the edge of the unknown.  I want to stop all the drugs I have to take for “maintainance mode” you could call it – you know the anti-sizeure ones for “in case I have a seizure – haven’t had one before or after (& I know that could be argued that they are working but without one single event I don’t believe it)” & the steroids “because my brain might still be swollen, but we need to get you off them for a break before the next treatment” and the anti-pneumonia pills – well I could live with these – but all these just in case pills that cause me to fuzzy up just are really pissing me off.  See while waking in pain is normal (for me and I can take it) I am also waking feeling normal in my mind – clear thinking, clear-headed, and as close to the beginning of March aka pre this as I am probably ever going to get.  But every time I take these pills I get thrown out of ‘normal’ to a fuzzy messed up mind that makes me want to scream.  But instead it just reduces me to tears – yep Friday night I’ll admit I cried to sleep like a child as the reality of this missing of myself hit home.  You know me – who I am, living my life, doing my job, playing my footy, driving, drinking and just been ME!  Stuck between a set destiny and a messed up mind to live out the rest of my days in.  Some days really suck to say the least.  Hope this sort of makes sense to folks.

So – had a sleep in till 9am then Jacob came to see me as he is going to cook brekky in bed seen as there is no kids footy this week due to the School Holidays.  He goes off and gets busy in the kitchen.  Judging by the noise it is pancakes on the menu.  I play on the tablet a bit while having a think about things.  Lachie comes in to see me too – and has a chat.  Brekky ready – and it is Pancakes as I suspected.  Very yummy with Bacon, Bananas & Yogurt.  Left the Maple Syrup at Hoon Hay Rd – doh!  Just finish brekky when Mum turns up for a visit.  Sue and Lachie go off to collect the dog and take her for a walk.  Great to catch up with Mum – haven’t seen her for a couple of weeks.  Mum leaves just before the others arrive back.  Also get a postcard from Viv & Col – thanks – Aussie sounds warm & nice.  Take my drugs and go back to the messed up world again – much to my frustration.

Have a quick-lunch and get ready to go to the old boys footy game at Burnside.  Half jokingly say that I’ll play as miss my chance to kick something to let steam off.  No need for me as they have plenty of subs.  FC2011 only have 9 players but we make hard work of it and don’t seem to seize the chances we should.  A couple of the guys breakdown in the first half so subs dwindle.  Second half and we are up 5-1 s I kit up and get a run (well what I can now manage) for 8 minutes.  It absolutely stuff’s me and I will probably pay the price later for it – but I did it.  Home then for a shower, then down to the clubrooms for a Coke and a catch up with the other teams.

Home then for dinner and to blog – 2 days worth to catch up on. Also watch some TV too.  Feel good still for the run, but head still not there yet.  Anyway – not your problem to deal with or worry about.  Hope all have/had a great day/night/arvo and had fun.  Till tomorrow’s messed up world unravels.

Kia Kaha.

Day 19 of 28 Treatment Free.

Drifting on & off since 3:45am after not getting to sleep until after midnight.  Resist the temptation to get up early until 6:20ish.  Only reason to get up early is that I’m going into the office today, else not a lot else to be up for.  A lovely foggy day (thanks Auckland), make a cuppa, brekky and login to work & do a quick check, then get myself ready.  The rest of the family is sleeping in so I arrange with Jono to collect me – thanks man.

Head into the office via the blood testing clinic – bloody vampires – sware it is some sick punishment as I hate needles and i have to get blood tests every week, etc. All done then off to the office.  Meet the guests over from Australian Fairfax and Steve one of the Auckland based IT managers that use to work with us.  Good to meet and see you all again.  Keep busy trying to sort out a change that The Press want done with the online editions.  Bernard takes the guests out to the Logisitcs site to show them the setup there.  Cath, Jono, Georgia and I head then to re:Start mall to get lunch, then back to the office.

I get collected about 2:30 by the family, and taken to bowling, as the boys have decided they want to go.  Have fun bowling – I win but very close.  Head home then via the supermarket and a quick stop at the Booth family to say hello.  Then via Hoon Hay Road to see the repairs there.  The colours downstairs look good.  The floor upstairs has been in our bedroom has been opened and one of the steel beams has got a nice bend in it now, so will be interested to see what they are going to be doing about fixing it.  Stop by to see the neighbours – Hi Deb & Glen.  Then homeward as fading and starting to hurt. 

Head not in a good place / space so decide to not do the blog and just relax and watch TV.  Head to bed early then after M&D time as shattered after a sleep deprived night and early start. Not sure how good an idea as brain working on things again – but I continue this for Saturday.  Trust all had a great Friday.

Kia Kaha.

Day 18 of 28 Treatment Free.

No early start today – as a late night in the end.  The brain is in overtime mode again, so sleep doesn’t come easily.  Lots going through the mind and many emotions thoughts and feelings.  Don’t know if it is just not undergoing any definitive treatment that is doing this to me – as in when I was doing Chemo & Radiation I was focused on that and had a physical link to what I am battling and whilst feeling the effects of it – it was real.  Now I am back, I feel, to where I was prior to the start of treatment.  I know in 10 days I start 6 months of heavy Chemo alone (5 days on 2 days off a week on twice the dose I was on previously) which will probably give me that physical link again.  By the same token then it also means that I then have a marked day in the future that the treatment will end and that physical link is gone again, and I am then off treatment and that’s it until?  I’m not going to stop fighting these moffo’s but I really need to have my mind-set in for the fight, which takes a bit of work and soul (I use that term lightly as I sold out my soul many years ago) searching to get in the correct game plan frame of mind.  So some days if I’m snappy, weepy or just not quite right it could be just cause I’m in a deep place readying myself for 16 July.  Eventually I drifted off about 1:30 I think.

Woke with a little pain but in terms of the past week its nothing.  Up and into the day – no point lying around getting old when the clocks ticking (suck up the black humour folks – it happens & makes me sane – well slightly. Head is in a good place and feel the best I have to start a day in several weeks really.

Login into work, get brekky and manage to catch a Priority 1 fault and get it sorted quickly then sort another problem too.  Feel quite chuffed as I have managed to remember how to do something basic that was a little fuzzy a few weeks ago.  Yay – for me!!  Actually don’t really give a fly one if anyone else sees it that way.

On with the day – and well nothing much to report really as just another rainy day with inside activities.  Boys get dropped at the movies to see The Amazing Spiderman and I have an appointment.  Then into work again – well what I can muster as I start flagging early today – tremors in hands and leg and head pain and fuzziness kicking in and out (really want to know if this is drug caused or tumors as it would be nice to know what I am in for) – disappointing after a good start to the day. 

Sue and the boys go off visiting Sandra and the boys – I stay home.  Dad stops by (thanks Dad – the comment that I have lost weight especially in my face is a wonderful morale booster), then to visit and catch up on a few things on the go at the moment.  And to have a general chat about things including how he is with whats going on.  Dad leaves just as the family return.  The boys get changed and go and kick a football around on the empty section next door – in the rain – much to the amusement of people passing.  Oh well, they fit right in really!  They come in smiling, happy and frozen – but are happy so are ordered to the shower to thaw out and clean up. Then dinner & off to bed with them as they yapped until 9:30 last night so an early night is needed.

Do dishes and then onto blog.  Want to watch Mrs Brown’s Boys tonight as it has the waxing sketch in it – absolutely hilarious!  Pretty much nothing much else on to report or say about. Still in fuzzy land, and just as it eases I will have M&D time to start it again – at least I get to sleep through that fuzzy one – well provided I can actually switch the brain off.  On a good note I finally have an appointment with the top Neuro that is advising on my case – he’s the one who oversaw (indirectly) the biopsy, & has been noting all the case as it unravels.  WIll be good to hear/speak from/to him personally.

Anyhow – take care out there what ever the day/arvo/evening brings for you all.

Kia Kaha.

Day 17 of 28 Treatment Free.

Wake since 4:30 ish but stay put as no point getting up so doze on and off.  The usual pain is there so you know the routine.Have been thinking that I really need to snap myself out of this down moment I’m in.  Head is mentally in a fuzzy place – but OK.  Physically – well this is a gem – blob gone, but left eye very blurry, sensitive to light, not thinking really clearly.  Can only assume it is due to steroid weaning as I’m now back down to 4mg.  Wilson and random left have over the past few days been tingling but not playing up.  Today they are back – not bad but enough to make me wary about walking downstairs without taking care and holding the hand rail.  Taste buds are terrible too – everything tastes like – blah!

Into the day and slow going – boys moped over the lounge suite zoned out at the TV. I login to work to see whats going on – maybe its just the world is a little slow and fuzzy today rather than me – I wish.  Boys get a kick in the bum about 9am to get brekky and dressed.  Find out that the owners are wanting to come and show someone the house at 12:30 today rather than tomorrow as planned.  The boys are put to work – tidy rooms, Lachlan’s on bathrooms & toilets (& there’s 3 of them), Jacob vacuums until I take over to finish it off (Dad standard over boys standard). Kitchen sorted too.  House spotless.

Give Dad a call to get a ride into town to collect a couple of things that have been delivered there.  Good timing as the owner arrives just as we leave.  Scary drive with Dad as he is still a sightseer with all demo work.  Really I wish I could drive still!!  Adventurous drive home via RIccarton Road – why go that way I don’t know!!  Dad still learn the concept of lane markings I think, as we take off and just drift over into the lane with the big truck in it – thankfully we are faster so no problems. But when your head is in a messed up way and the virtual brake is just not stopping the car it makes for a freaky ride.  Make it home in one piece and keep going with work.  Have a conference call to be on – all good, then keep plodding on.  Head and left side still miss behaving – and neck getting sore now.  At least the energy levels are holding in there today. 

Lachlan has a Orthodontist appointment.  Jacob stays home with me as it is boring for him otherwise.  Take the opportunity to have a chat with Jacob about school and how he is going with everything that life has pitched at us and him, etc.  It is the first real chance/time that we have had to do this.  Well overdue, as tears are shed, no voices raised, sighs let out or huffs – just hugs and a good honest chat.  Feel so much better for it and so does he (well at least he said so).  I realise how much everyone’s world has been altered in some way through me, but trying to understand how the boys have been effected is something they need to share, not something that we as adults should try to interpret, as is often the case. So straight talking has won over and I now have a better understanding of where he is, as does Jacob having a better understanding of how I am.  Lachie and I tend to have more little chats about things as they happen rather than huffs at each other.

Dinner time – Spag Bol that I got ready last night – good Boys Brigadier (I was never a Boy Scout).  Boys through the shower early.  Quiet night planned, blog done, relax in front of the TV – Sky is not that good for you really   Then M&D and sleep.  At least in a better frame of mind emotionally anyway.  Sorry if it’s been a boring or stroppy sort of Ramble the past few days, but I’ve been all over the show with everything – and I guess as the intention of part of this blog is to just dump it as it helps.  Also in the future the boys will get to read it hopefully and understand just what the hell I was going through on that day and with this whole journey & battle.  Also a quick side note as I have been asked a couple of times – Hearing is also playing up a bit and my memory is a bit of a mess as short-term I am forgetting basic things and long-term requires more digging to get to some of the details out.  But I get there – just may take a little more time than normal.

Thank you for been there everyone.  Hope you’ve had or having a great day/arvo/evening – be safe.

Kia Kaha.

Day 16 of 28 Treatment Free.

Only a 5:45am start today – more because of mulling things over than pain or the other crap that goes with this ‘new way’ of living. Yep not in a good head space I guess – but also it is the right head space to be dealing with what I need too.Welcome to Tuesday folks!

I now treat the pain as a bit of a game, in trying to guess what’ll hurt next and how long will it hurt for – sad eh?  Also will it then be cramp or deep pain?  But it helps pass the time before getting up and dealing to it.  If it is bad enough then I will get up and do something immediately, but as I actually don’t like sucking down pills like lollies I try to resist it. Mind racing today too so staring at the ceiling is not going to cut it.  Head downstairs to chill, have a cuppa tea and take time for me to think.  Maybe that’s half the prob – I do think too much.  But then I need to understand so I think about things I then need to research to understand more which leads to thinking more.  But you can never know enough of anything ever, so I guess I haven’t changed in that sense.  The day you stop learning and understanding is the day you start dyeing.

The emotional side seems to be easing some what thankfully.  As it is very tiring and while I have to deal with it, I want to on my terms not when the random shit pops up in my head (already had that happen 3 times) cause of the Steroids.  I guess there are lots that I have to process still about everything – past, present and future.  I mean that I need in my head space I need to be sure that I am settled and will be at peace with everything knowing that not just now but when I’m gone things will be fine. I know I can’t control the later part but it is just to put myself in a good place.  Mind you I intend the later part to be a while away.  In fact as long away as I can make it!!  I have accepted there is so much beyond my control, but there is also so much within my control too, and the right attitude is going to define that more than anything else.  So if you see me slipping into a negative space – just tell me to be positive, if you one of the many that just check occasionally with a txt or email and I need a kick in the pants then give it – cause chances are it maybe the only one I get that day but is all I need. Enough waffle.

Cruisy morning for the boys – the lads watch Mythbusters – no cartoons today else I’d go spare!  I work – while they enjoy a bit of science.  Jacob prepares a morning tea of apples, biscuits and muffins on a little platter for morning tea for us all.  He is a good lad really. Quiet day – fading off and on with energy.  Muster enough up to duck out to drop the boys at a KidsFest trampolining session.  Then off to do a couple of things – pickup a Curried Sausages dinner from Roh (perfect as was going to cook a spag bol but couldn’t be bothered) and then to Deb & Glen’s (Neighbours) to collect mail then back to the boys.  Catch the last 15 mins of their session, and they are doing a good job and having fun – well it seems.  Jacob has found another sport it seems that he wants to take up. 

Home for dinner – thanks Roh.  Then boys to bed.  Quiet evening – on to blog really early as fading off.  Sick of feeling sick and tired and crappy.  No I’m not in a good place but I’ll deal with that.  So signing off now to watch some TV, unwind and hang out until I take my bloody mess me up evening drugs at M&D time then bed.  Already to rise with a cheery smile to face and day – and yes I am been sarcastic!!

Have a great day/evening/arvo all.

Kia Kaha.

Day 15 of 28 Treatment Free.

Slept through another night, but think it is due to share tiredness more than anything.  I am finding myself emotionally exhausted at the moment.  There is so much that is close to the surface and it is tiring dealing with it.  It is also probably the weekend catching me up even though I took it quietish, it does drain me.  My old friend head pain has still been popping by during the night and not long after waking I get a shot of the pain in the head and nausea feeling like Saturday week – not what I want!  Get some of my little helpers – low strength – into me and it seems to help.  Out of all the things annoying me most at the moment is the pain – any bloody where, and everywhere, anytime.  It just is a pain in the bum really.

Will explain more later as just don’t have my mind or emotions in check enough to get it out in any sensible way.

On with the day – working from home as the boys on holiday.  They get up and have a cruisy PJ morning tech free with the exception of TV – can’t deprive myself   We watch the Euro footy final – Spain vs Italy – good game and an excellent result for Spain.  Then the battle of the remote begins – and results in either agreed channels or time allocated slots.  Agreed works mainly but takes some work – with time-out to sort out their rooms.  Gives me peace to try to figure out work.  Sue comes home and we duck out to the supermarket after lunch and to also get the boys some gear they need for their camp next week.

Home again and a good mate, Graeme stops by for a visit and yarn.  Unfortunately I am that drained I do my dozing off trick – sorry G!  Start to liven up a again after about 30-45 mins.  Head is hurt in spells again too – as it has been all day.  Dinner then and into the blog for the day.  Wilson is also acting up a bit – though still have full control of him. Head is still waving in and out of pain and feel a bit like might be getting another lurgy on board – ahhhh!!!  I’ll get the blog done, cruise until M&D time including a Vit C tonight, and then hit the sack as shattered again now

Hope you’ve all had a lovely great time in the present (remember yesterdays saying).

Kia Kaha.

Day 14 of 28 Treatment Free.

Welcome to another day.  Had a bit of a sleep in today seen as the boys aren’t here and didn’t get to bed until 2:30ish.  Though been awake several times with pain as usual.  Interesting as to what pains are getting generated and from where – the main one I’m having is the headache which hits then follows with a nauseous feeling.  Also had the teary eyed sessions going again – obviously I have something running in my mind that is causing them but it is hitting in my sleep.  I have never woken laughing funny enough.  I do have a lot of feelings, thoughts going through my head at the moment which could/would be causing the emotions.  Also I am starting to mentally prepare myself for the next round of treatment.  I know it is still 2 weeks away but as they have said that it is going to be harder on me then I think I need to take their word on it.

I think the reality of the past 4 months is hitting home more again too as I approach the next phase.  Even the past 2 weeks, while stopping treatment, has been hard.  Yes, the Docs and others said I did the treatment very well  – but it doesn’t mean that I breezed through really.  I am still fighting on not just tumors, but the health, and weight and physical side that comes with it.  And then there is also the dealing with the emotional side.  The emotion as some days are the hardest thing to deal with.  It is hard to stay out of the dark places of your mind when you are given terminal verdict.  Thinking of life when you’re not here, looking at current situations and placing yourself outside them, as it will be, thinking of future situations and wondering what it would be like to be there.  Maybe I need more steroids at the moment to calm – joking!  Also the stress of moving out of the house, etc has not helped the past couple of weeks – so all in all it has added up to a full on time.

Get up and make a cuppa tea and tidy the kitchen.  Just cruise along through the morning.  Dad comes over for a visit and chat and to drop off a couple of blankets for the boys. Sue and I then head off to out to Riccarton.  We have  brunch at Coffee Culture in Riccarton, then have a wander through the Mall.  Again another tester for me with crowds, noise & snotty nose little grunters who need to learn some bloody manners – rude ass little so and so’s.

Home then via our house to cover the gym and checkout the progress.  Lots been going on and they’ve been busy as downstairs getting the walls done and prepped.  Also pickup a couple of things they seem to have missed so send an email to the Boss about it.  Head back to the temp home then too – just having a cruisy day.  Kylie & Mark drop the lads off about 4pm and we have a coffee and chat while the boys terrorise the neighbours! Good lads! 

Have dinner and a test “little” bourbon – better than the beer last night.  Takes about 2 hours to drink – cheap date   But again no effects – it doesn’t mean I’m off the wagon or breaking rules (well I are, but if you know me then rules are the guidelines to things that ensure orderly behaviour, and as I’m at home I can be disorderly).  I have 2 weeks to enjoy myself before who knows what with the next round so I am trying to extend myself while I have time – and I have lost 2 weeks already!

Cruisy evening doing the blog and watching TV.  Getting tried too – so about to call it quits for the evening.  M&D time then sleep.  Hope all had/have a great day/arvo/evening.  The usual – keep it safe & keep it real.  There is a great saying about time I love so will end with it:-

“The clock is running. Make the most of today. Time waits for no man. Yesterday is history. Tomorrow is a mystery. Today is a gift. That’s why it is called the present.”

So hope your presents are all wonderful today.

Kia Kaha.

Day 13 of 28 Treatment Free.

Firstly – a belated thank you to all those involved in looking after and assisting last Saturday when I was taken/in hospital, esp. Craig – very muchly appreciated.  So it is belated.

Well another footy day and a busy day that I will have to pace myself for as going to footy tonight so need to conserve my energy.  Woke with a bit of pain in back, legs and head but – well – its normalish now to feel like this so deal with.  On with the day and its a slow start for all.  The lads appear so get brekky orders and get that underway for all.  Logistical arrangements are made and sorted for who is going to whose game and how and who with.  Bugger when you only have one driver!

Jacob and I are dropped off at Fish’s house and then go to his game from there.  Jacob’s team play fairly well and are on a huge field so are a bit lost to start with. Second half is better and they have several good chances and the end result is 1-1 with FC2011.  Lachlan’s team come out winners 7-1 – fantastic result – over Cashmere Tech.  Jacob & I head for home with Tricia and Connor – thank you.  I’m not going to the senior game today as they kick off at 1pm and as I’m in for a late night I need to go home to have a rest.

Get home and boys get cleaned up and fed, as they are going to stay at Kylie and Marks, and the boys tonight.  I have a lay down on the couch and doze off fairly quickly.  The boys wake me to say goodbye and I’m off to nap land again.  Set the alarm to wake me before Bernard comes over.  We are meeting here then getting dropped off at the game. 

Sorry – the game I’m going to is the Crusaders vs Hurricanes game, I am a corporate guest of The Press in the First 15 lounge – so catered 3 course dinner, drinks, game & coffee and cheese & crackers after match.  Sue drops us off for dinner about 5:30.  Very nice start to the evening – dinner is lamb & vege and cheesecake for dessert.  I am even a bit of a rebel and bare to try a light beer.  It is yuck!! Just like drinking a glass of liquid sugar.  Manage to chew my way thru it but not enjoyed.  Also no side effects so all good.  Over to the game then, which is also a bit of a tester for me as I haven’t been able to handle crowds or a lot of noise for a while.  I manage to survive it well which is good as it means to that I will be able to try to go to the movies with the boys with out flipping out.  Not the most spectacular game (& definitely not helped by the reffing – wowser!!!).  Still enjoyed it none the less.  The new stadium is set up fairly well work nicely.  Great you can hear the players on the field – and gives some meaning to the crunching tackles when you can hear the smack clear as from your seat.  Back then to dinner for coffee and cheese & crackers and a bit of a yarn about the game.  Great evening out all together.  Bernard and I get a taxi home then.  Sue is still up watching the Social Network movie, so make a hot drink and have some nibbles and watch it too while having a general fat chat. Sue then heads to bed and Bernard and I watch Paul while nattering still.  Funny movie! Nice end to a good day and evening.  Its been a long day but nice to just chill and unwind. Do M&D when I got home too.

Hope all had an enjoyable and fun Saturday – sorry this is late.

Kia Kaha.

Day 12 of 28 Treatment Free.

Another early one to start the day. Woke in pain about 5am, & managed to go back to sleep, then woke with cramp about 15 mins later, then pain then the random tears are back – WTF!! Decide to get up then to take the usual helpers.  Start on the blog to get a head start as I think it is going to be a long day.

Have been thinking about the waffle from yesterday and realise it probably didn’t quite come across as I wanted.  It was more like a grumble/grump than a waffle.  Yep I was a little pissing writing it  – as I do get at myself and others.  Please do understand though that it does get frustrating, and I do try to consider others feelings and how they are coping with whats happening me.  Some days are harder to really do than others.  SO if you took it wrong, or I did get it wrong, then so be it.

Seem to be lost in time again and feel I’m rushing lots, but probably not really are – just the illusion you have with these bloody drugs.  I really would love to take a month off all together, just to find out what they are doing to me.  The anit-seizure drugs seem to actually make me worse and bring on tremors  – how ironic.  The steroids – well we know what there – but I am now on a half max dose (8mg) so getting down.  The anti-pnuemonic one is fine and the pain killers – what shall we brew up there, as I have 3 different drugs I can combo up depending on the pain levels – 9 out of 10 times it is only a Panadol or 2.

On with the day and off to work.  Another quietly steady day.  Bernard, Jono & I go to The Boatshed Cafe for brekky.  Not too bad really – still not quite up to Cafe Raeward really.  Get back and keep working on. Really not in the frame of mind to do much but have a little job that I need to remember so don’t mind the challenge as it gets the brain working on the remembering.  Leave at 1:15 today, just  as I’m depleting for the day.  Seems that while I’m  still crashing out, it is now later in the day and Thursday/ Fridays are more manageable, where they used to be bad days.  Login to work when home, but the system has a few issues and doesn’t want me to stay connected properly – well consistently, which frustrates me as I was on a roll.  Oh well – manage a bit more work then call it quits.

Andy, Roh and the girls come over to visit and have a catch up.  We decide to do F&C’s for tea and watch the rugby. Pain in back is doing its thing but decide to wait before taking pain killers so that I can have some before bed and get some sleep – well hope to get some sleep.  I do not want a repeat Saturday of last week – thanks! 

Do M&D time and finish blog while waiting for them to kick in.  So good night/day/ arvo folks – take care – have an enjoyable weekend whether relaxing or partying – but be safe.

Kia Kaha.

Day 11 of 28 Treatment Free.

Early start again today – woke with pain from lower back to head – odd and sore – so get up to take pain killers.  I thought that it was 5:50am so fossick around for a bit waiting for them to kick in as the head keeps hurting. It’s not till a bit later that I look at the clock and realise that it is only 5:30am!  Doh – need to make sure that I look at the clock better next time.  Don’t bother going back to bed as I actually don’t mind been up early as tend to get a bit done.  Jump in and clear some emails and start dong the blog – early – shock, horror – yes back to the old ways!

Have some thinking time about whats currently going on in life.  Yep crash out last week – more soon – but apparently to be expected.  Think about how everyone related to treatment has said how well I have made it through with little side effects.  It is interesting as some of the others that were on the ward with me on Saturday have done less treatment but got hit harder – that is cause each cancer type is treated with different doses of raidiation (if at all), surgery & Chemo drugs.  But what we probably agreed on most is the attitude you take into the treatment.  I think that we didn’t have the wrong attitude but agreed that it is hard to maintain a positive attitude 24/7.  You do need a kick in the bum occasionally but the right sort at the right time.  But the main thing we agreed on that was also the most frustrating one – was having someone look you and say you look tired and need to sleep or lay down.  I still have a brain – in fact I have a bigger brain (insert raspberry blowing noise here) – and know when I am tired, and when I need rest or sleep.  Push the wrong buttons and I’ll still grump or explode – I am still here / in here (my head).  But don’t decide what’s good for me or comment about me unless you are me.  As has been mentioned previously I am dealing with cancer and treatment – both of which have their own effects – as to which is doing what, I don’t really know now that it is 3 months on.  But I do know and accept now that the old me is still here but the effects are getting more visible.  The thing I need from people is to treat me as I was because I am still in here looking out at people not sure how to really deal with what’s happening.

It would be a good time to maybe throw some answers to common questions too that I have had asked recently – not many of them but some :-

• When will they scan again? – Probably End Feb/March next year, because the treatment is causing the tumors to swell, therefore a scan now would give a false reading.
• Why the steroids increase again? – The steroids are there to decrease/control the swelling on the brain caused by the treatment, but they (as we know) have side effects almost worst than what they are trying to help (esp. when on a high dose to long).
• What next? – No more radiation treatment but 6 months of Chemo at a higher dose than what I had during the 6 weeks.
• After the 6 months Chemo, then what? – Well I keep on rocking on like now (well intend too), as to what state I’ll be in, who knows – but I know that if I made it this far with little serious changes then I will be bloody well making it through the Chemo only stage as best I can.
• Why am I still working? – Really you have to ask? Routine, normality, and hell what would I do sitting at home?
• Do I ever get angry or worried or sad about whats happening? – As mentioned previously – Angry, no as I have to find a reason why – it’s happened/happening accept it – I have.  This is what my fate is I can only take the fight I have to it as it is inoperable. Worried – about what? Do we really know how we are going leave this world? Sad – actually I do, in been more about the people who think it is their right to pass comment about how I am or how I behave – look at yourself first before casting comment.  I’m not going to become some tame pansy overnight nor change how I react to the same situations – or is that what’s been expected?
• Hows the blob on the eye? – Getting better thanks. It is fading, but a new thing is it gets wavy and out of focus.

Hope this sort of answers some of the common things.  Enough of the waffle – on with the boring stuff of the day.

Into work and a slowish day.  Bernard and Jono are at Logisitcs moving the last folk from some of the outer PortaComs to the larger ones that are staying.  Cath and I have a natter as we work.  Building has the gitters (bouncing lots), but we have now put it down to the Grant Thornton building coming down (even though it’s the other side of the Square from us) as nothing else is near enough to shake the place like this.  But we did have a little 3.9 shake at 9:26am.  Energy is up and down today so will watch myself. Get picked up at 1:15 as have a meeting with the Radiation Doctor at 1:35.

The meeting goes well, and discuss what happened over the weekend.  Which is ruled as a crash from the radiation treatment. Also he is keen to get me to decrease the steroids again as I will be on them for 6 months during the Chemo so any break is going to be for me. Probably the last call I have with him too.

Home then and take it easy for a bit as tiring – but interestingly enough, not as much as last week (but I had a lurgy on board then I think).  Quiet evening finishing blog & watching tv – Mrs Brown’s Boys – very funny   Do M&D time & pain killers then think about bed as eyes getting very heavy and it’s been a long day.

Take care all.

Kia Kaha.