Thursday, 31 July 2008

When it rains it pours

Well moved back into Mt Eden today, with much help from many people (big hugs a kisses). The place is looking fantastic - except the outside of course which is a mud bath - so beware visitors, you might need your gumboots for awhile. Hopefully the rain stops soon and we can do the concreting etc.

Also I had my mask appointment with the Radiotherapists this afternoon, busy, busy. They basically heat a plastic mesh in hot water and then press it onto your face - kind of feels like a hot facecloth - but one that you can breath through thank god. Then when it's cold they mark the outside of the mask so they can line me up correctly each time I'm on the slab - so to speak. I'm somewhat claustrophobic, but managed to last the 30 minute process without losing it - almost nodded off at one point.

My five treatments start on Tuesday morning and run until the following Monday. Let's hope it can reduce the tumour significantly in order to give me some extra time. Let's hope it doesn't cause too much damage to the brain, but at the end of the day the tumour will have similar side effects anyway.

I am reasonably well at the moment, just have quick and extreme changes in temperament (yes more than normal), which is a little stressful, but probably more so for everyone else. So like everyone else I'm just blocking thoughts about being terminal as much as possible and getting on with things.

Monday, 28 July 2008

Waiting, waiting ...

Still waiting for my radiotherapist appointments. So no news really.

It's moving week, so today am resting and building up some energy, after a goodnights sleep.

Tuesday, 22 July 2008

Next step

Emotions were high on Monday, but after a good nights sleep I headed in to see the Radiotherapist. Had to stay in my room all day just in case they turned up, they will just vanish again if you aren't. Anyway I was there when he arrived and my brother Tony was able to be with me, so between the two of us we covered all the questions.

The plan is 5 shots of radiotherapy and this will start in about 10 days (they like a gap of 1-month between chemo and radiotherapy). Before then I go in to have a mask made for my face - that sounds like fun!

Everyone is reasonably confident that this will control the tumour and should give me an extra month or two or three.

So it's great to be out of the ward and back at Mum & Dad's. Next week the final touches are made to the house and moving day is Thursday the 31st - looking forward to this very much.

My PICC line half stopped working (will take in fluids, but not give bloods) so they took it out - now I'm free!! So back to two showers a day instead of one, in fact when I'm home with the gas hot water I might just stand in the shower all day.

Have lost my appetite this week, which is very strange for me. Was looking forward to losing some weight with little effort on my part, but they have put me back on 4mg of steroids so I'm sure I'll be in the fridge again.

Chemo #5

Chemo # 5 has been cancelled. I reported headaches and other problems so Doctors decided to do another CT scan to see what's what. The tumour is growing again, which means the chemo isn't working.

They have referred me for Radiotherapy, and at this stage I'm waiting for a meeting with the Radiotherapist to see if this is a viable option or not. Unfortunately I might not see them till next week - so I have nothing to report for now.

As you can appreciate this is difficult news to process at this stage in the treatment. I had my head around being terminal, just not so soon, but I suppose I've past the 3-month prognosis.

So conversations have moved from short holidays to palliative care. The funny thing is that I'm the healthiest person in the ward by a long shot.

Sunday, 20 July 2008

Chemo #4

Well Chemo #4 actually happened last week, but I forgot to report on it.

1) My Brain Tumour Buddy died this week. Such a great guy, I will really miss our conversations. He only had 1 week where he was in pain and realised he was "down to the wire". So it was very quick and the pain was manageable with morphine, so he didn't suffer. Obviously this gave me a big fright - he was told he had 3-6 months, just like me.

2) My niece Julia is still in hospital (along with her Mum) which means 6-weeks in jail. I must say they handle it well, I struggle with 5-days each fortnight let along full time, although they did get to spend Saturday night at home, until another temperature spike! The doctors are still trying to figure out what's wrong.

3) I have a 24/7 headache now. It started 10 days ago requiring no painkillers and built up till yesterday where I took codeine, panadol, tramadol and panadine and it still took 7 hours to get on top of. Overnight I slept for 9 hours and its back to requiring no painkillers - weird. Trying to figure out what it is, hopefully the doctors can pinpoint the source, hopefully it's just poor posture pain!

1) Was released on Thursday - a day early - because I was healthier than everyone else. Fine by me, sleeping at the hospital is never good.

2) Came off the steroids on Wednesday, so now it's just a case of some dieting and get this extra weight off. I forgot to have lunch today, which is amazing - haven't missed a meal since the 20th of May, let alone feeling hunger pains.

3) Julia is still in hospital which means I have someone to hang out with each day. Mind you she's back to hospital school tomorrow, so I'll struggle to catch up with her. Her school buddies are much more interesting than Aunty Unu (me).

So I've been resting up today, preparing for Chemo #5 tomorrow. The hospital is a very busy and tiring place to be. Hopefully they'll let me out early again, but I suppose the depends on the headache.

Wednesday, 16 July 2008

My nemesis!

Due to renovations, I have been staying at Mum & Dad’s place, waaaay out in the country, faaaar from everyone else.

Everyone asks what it’s like staying at home with your parents – what they are really saying is that they couldn’t live back with their parents. But M&D are those relaxed, laid back, well balanced kind of parents and it really is fine – yes they have their ‘ways’, but I’m sure I’m more of a pain than they are.

However, they do have one veeery big fault. They are absolutely and totally in love with Boss the dog. This love means the little bugger can do no wrong. He sits on the couch; he sits on the arm chair. These are places I like to sit and I hate (and I mean hate) animal fur. If you move around the room he’s there constantly underfoot, if you aren’t moving around the room he’s there, wanting constantly to be patted. If you get in the way of him and food he bites you, if you smack him for this, he bites you again. If you say to M&D that this is unacceptable, they say you shouldn’t get in the way of him and food. If he steals food from the kitchen, it’s your fault for leaving it in his reach. If he goes into your room and steals your clothes, it’s your fault for leaving your door open. Every door has to be shut or he’s into everything - it's like living in a jail. He is an un-disciplined, spoilt baby and generally has the run of the house.

So Boss has become my nemesis. He thinks he is hot stuff – probably because Dad tells him so every 15 minutes. He also knows that he outranks me and he knows I’m on to him, but what does he care, he has the love, adoration and protection of M&D.

But I’ll figure out a way to get the better of him and I think it will involve the cat (Puppy) who rules it over Boss. She’s another weird animal, but loves (ok likes) me, so between us I’m sure we’ll think of something.

Saturday, 12 July 2008

Blogs of the week

I love this, I get to do a blog without all the hassle of writing anything ...

Goodbye Helen Clark, and thanks for NOTHING - Elliot Who?

Snouts in a $750 million trough - Not PC

Hanover securitised part of 5 -Mile Loan (Update 2) - (if Fortress is involved then Hanover has no control over anything now).

A trip to Canberra with Alan Bollard - David Haywood

Why is Labour so hypocritical on transparency? - Kiwiblog

Get your own house in order (NZ) First - Cactus Kate and then also
The Party of moaning New Zealand - Liberty Scott

Who are the perverts? - Liberty Scott (don't trust your children with people that find this photo offensive - it's their brain that is perverted).

The money pit that is the Mission-On website - Show me the money.

Wednesday, 9 July 2008

Snoring causes cancer!

A common question I get is “why did I get cancer” or a variation of this “what causes Lymphoma”. I get all sorts of theory’s put to me – the food I eat, the cosmetic products I use, stress, karma (yes really), you name it, it’s been blamed.

However, in the darkness last night, whilst I lay awake to the symphony of snoring, I had a eureka moment! Snoring causes cancer – or rather the lack of quality sleep causes cancer. And here is my evidence ...

Every night 75% of patients in my room snore – yes really – it is a torture session for the likes of me. I am absolutely sure that this percentage is higher than the normal population? Of the remaining 25%, 98% would sleep with said snorers, so again don’t sleep and the remaining 2% - such as me – simply don’t sleep very well full stop.

So in my delirious sleep-depraved mind this all made perfect sense – lack of sleep, caused by snoring, causes cancer! The stats above are completely accurate and scientifically collated and will stand up to peer review. I’m sure I can even get a big research grant for this study.

So snorers – go to your doctor and sort it. Even if by some slim chance I’m wrong about the cancer thing, snoring is just plain wrong and needs to be stamped out immediately.

In fact this is my Rule for Life #2: Don't snore!

Where the hell is Matt?

Well I can't figure out how to put a You Tube video onto this blog so you'll just have to link to it here. After a difficult night in the hospital (not me, another patient) it made me smile.

Matt seems to have been everywhere - even Auckland.

Monday, 7 July 2008

Yet another limp wristed policy from National

I thought I was going to have to praise the National Party today. Not something I usually like doing and very rarely have any reason to either.

The NZ Herald sums it up like this:
Current law: Can be dismissed within a probationary period but can take a personal grievance claim if they believe the decision is unfair.

National's plan: Small businesses (with fewer than 20 workers) can dismiss a new staff member within 90 days, with no prospect of a personal grievance claim.

Now the thought behind this kind of policy is great for the marginal employee such as the unemployed, new migrants, the disabled or school leavers. It is this kind of employee that struggles the most to get on the first rung of the ladder. And given the numerous restrictions on employment and the existence of a minimum wage, the unemployed's chance of stepping onto that first rung is severely reduced and welfare becomes their lot. A situation that Labour for some reason just loves and since National sits shoulder-to-shoulder with Labour we expect National to come up with a limp-wristed policy such as this.

If National really wanted to make difference, it would remove all the limitations and restrictions on employment that they and Labour have forced upon the producers of this country, not waste our time with these silly half-arse rules that really will achieve nothing.

I bet within 91-days of this law being enacted there will be a court case where a fired employee will claim that they felt forced into the 90-day prohibition period and given the general lack of support for contract law by our severely impaired justice system, the employee will walk away with a fine sum of money. I see the next gravy chain in the making.

Friday, 4 July 2008

Hell, I'd sell my soul

Damn why didn't I think of this? Selling ones soul for $5,001 - I'd sell it for $5,000, which would be a excellent deal for Hell's Pizza, they'd get my soul well before they'd get Walter Scott's.

And haven't TradeMe turned into boring old farts - guys get a sense of humour.

Update: Well what do I know about all this heaven & hell palaver - apparently when you sell your soul the transaction takes place when you are alive. So I have no advantage over Walter at all, he would be much more useful in the promotion of Hell than me, him being a healthy 24 year old and all that.

Thursday, 3 July 2008

Go Truckies

Good on the truckies, go for it - finally someone is protesting against the theiving bastards that like to rule it over us.

Gosh years and years of Kiwi's just rolling over has finally come to an end - and I lived to see it :o)

Update: I was in the city this morning, so got to see all the trucks - it really was alot of fun. The truckies seem to enjoy themselves and everyone I spoke to thought it was great - it was good to see some cheer going round for once. I think everyone feels that this Labour Government is on they way out and are just enjoying themselves?