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.

Chemo #4

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

Lowlights:
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!

Highlights:
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.

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.

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) - www.interest.co.nz (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.

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.

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.

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.

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?

Let's blog

Many of you are new to the brave new world of blogs and probably wonder what it's all about. Well fortunately for me I don't need to explain it as Bernard Hickey at Show Me The Money has done if for me with this weeks blog Click Here to Understand the Power of Blogs. At the same time he managed a big embarrasing plug for my blog - blush - I'm getting quite an audience now.

Bernard’s commentary is always on the money (well except that Capital Gains Tax comment of course, but we’ll work on that) as can be seen at this blog The Generation That New Zealand Inc Failed. This country is heading downhill so fast it’s not funny. Mr Hickey is probably known to you as the editor at interest.co.nz and is often seen commentating on business issues, especially with this credit crunch playing out.

Blogs are used for all sorts of reasons, from diaries of peoples’ lives, to politics, philosophy, business, humour and general commentary, to name a very few – many mix it all up. I just love it all.

One of my favourite bloggers is Cactus Kate who does an excellent mix of acerbic humour, political commentary, business and just plain un-PCness. To me she’s like a female version of Dr House. This weeks humour blog actually started last week with Simple Men Corner, it was updated on Tuesday with Cairns and concluded Friday with Cairnt. It has everything required to entertain – humour, suspense and drama. With characters like this in the world it will never be a boring place – love it.

In amongst the humour Cactus provides us with intelligent political commentary which can been seen with the following two blogs about Labour and National’s young candidates. More humour at ATM Rage – I'm too polite or sissy to deal with this situation like that, but working on it. Hell just read all her blogs and be done with it.

Another big favourite is Not PC who mixes politics, economics, and philosophy with beer, music and architecture. Not PC has been in a blogging frenzy this week – read about the recession, and the polar cap, but best you just read through them all and become enlightened about today’s current events.

Liberty Scott always has an intelligent commentary on events of the day – liked this blog. Every single blog will make you rethink your opinions – or think full stop – always a good thing for fighting that Alzheimer's.

Anyway, check out my blog list, I add new bloggers all the time.

Highlights of the week

10. Saw my CT scans – the before and the after – thank god I made the decision not to see the before, until the after was available – very bloody big it was, no wonder I had a grand mal seizure. Surprised it didn’t kill me on the spot. Unfortunately the printout isn’t of good enough quality that I can scan onto the blog, but suffice if to say – bloody hell.

9. They are taking me off the steroids – obviously they do this in stages as I believe it can kill you if you just go cold turkey – or maybe I’m being a tad dramatic. Anyway I’ve gone from a daily dose of 24mg Dexamethasone to 12mg. On Monday I go to 8mg and the following Monday to 4mg. Mum & Dad are pleased – I was getting rather argumentative, stroppy and aggressive – but since I got the argumentative and stroppy off Mum she can’t really complain too much – hehe. The aggressive wasn’t much fun though (and is still there a bit). Add to that the desperate hunger and weight gain, I was really feeling rather out of sorts. Looking forward to some weight loss and getting my face back.

8. Late night visitors had to con their way into the hospital this week – very successful they were too. So I have gained two extra brothers and one sister. But guys don’t think that you impressed me enough to get yourselves into the will :o)

7. Marina Erakovic has been fantastic this week, winning her first two singles games to get into round 3 at Wimbledon. I really think it is possible that she can win the next round against Tamarine Tanasgarn from Thailand. Pity she lost out of the doubles, but at least she can concentrate on one thing now.

6. Cool weather – I love storms and rain – and the hail is just an added bonus.

5. Was released from hospital today. Skipped around the ward a little too happily and loudly – forgot that everyone else was stuck there for the weekend – ooops sorry about that!

4. I visited the house renovation today and there is only one word for it – wow! Darling flatmate (DF), builders, labourers, plumbers, electricians, and the outstanding support from my ex-work colleagues and numerous others, has meant that the house should be ready to move into in the next few weeks and I’ll be able to spend some good quality time there. It was all quite overwhelming; it kind of doesn’t seem real actually. Poor DF has done the entire organisation without me. The only bonus for DF is that she gets to choose everything – fortunately she has good taste, so I’ve got nothing to worry about. To assist I’ve loaned her my Cancer Card, which has many more magical powers now that it’s been upgraded to Cancer Card Plus – plus meaning terminal, which I think will even hold sway with the doctors and nurses – but best not push that one till it’s needed. Anyway it’s getting a good work out by DF – the housewarming party is going to have to be huge.

3. I have organised most of my affairs now – it is so liberating to know everything is set right. It’s provides me with such a sense of calm that I have to recommend that you all do it. Now would be good.

2. Have been doing a marathon viewing of ‘House’ lately – am half way through Season 2 and somehow I had missed half the episodes first time round, so all good. Just love this show, it must easily be the best character ever invented for TV. Haematologist III said that it wasn’t at all realistic and I’m sure he’s right, but realistic would be incredibly boring to watch if ward rounds are anything to go by. Anyway, I watch House for the character, not for the medical aspect. I’d go so far to say that I might even love Dr House – I’ve never fallen for a non-person before – very weird. Oh well I’ll just say I love Hugh Laurie instead shall I :o)

1. Gosh the pressure to come up with a number 1. Thinking, thinking, thinking – oh I know, hair isn’t falling out. I cut it back in anticipation of baldness, but it doesn’t appear to be going anywhere at the moment. Oh well at least it’s easy to manage short.

My mission

Now I just have to temper all the excitement in regards to these results. I haven’t really explained to you how this will cancer will play out – but this is probably what will happen. As the cancer appears to be dying with this treatment I will possibly hit this tumour for touch. However what usually happens with this kind of aggressive cancer is that it returns. We then attack again, probably kill it, then it likely returns, we attack it again, we kill it, it returns and so on and so forth. Eventually the cancer becomes chemo resistant or the chemo becomes too toxic for me. At this point treatments stop.

So for me the central issue is how long it is absent each time – this is the big unknown – but this is my key to more time.

So my mission is to be around so long that you all eventually say “good god woman, you said you were dying, you’re getting really annoying, enough already”. Once you’ve all done this, then my work here is done.

Scan update

Well just a quick update ... Darling Haematologist just popped by to say that the scan shows that the treatment is working. There is still cancer there, but the drugs are getting thru the brain-barrier and tumour is breaking down – so we will carry on with the treatment – yay!

We are still waiting for the Radiologists report and a final protocol decision, but it is looking more positive than not.

Christ might not be able to sleep with all the excitement. Well actually more likely not to sleep because I have to get up every two hours to go to the loo – soooo much liquid is being pumped in – it’s really quite amazing how much ones skin can stretch.

Chemo #3

Well back at hospital today for the week for Chemo #3. CT scan at 2.30pm, but imagine I won’t get results until tomorrow morning at the next doctor’s rounds.

But good news – they have halved my steroid dosage – hopefully freak status reduces, along with wanting to eat the whole fridge every few seconds.

Here is the only photo I’ll let released at the moment of me and my darling nieces (DN1, 2 & 3). DN2 is also up here at Auckland in StarShip with a blocked bile duct – which they have operated on and hopefully she’ll be allowed to go home soon – she is getting really, really bored, but in true DN2 style is still going strong and great to be around. This is of course nothing but convenient for the family – one visit, two patients.

Fortunately, I’m very mobile so I just wander around the hospital whenever I feel like it. And now I’ve been set up with a Vodafone connection on my laptop, so happily sitting looking out the window at the trees of the domain and keeping in contact with everyone. Feel more like a human being connected to the world.

Warning: contains religious content

I'm never shy to discuss a topic, and since friends - and strangers - seem to be bringing up religion at regular intervals at the moment, I feel free to raise this topic all over again - don't blame me, you guys started it.

I thought everyone knew that I was a die hard atheist, but since it still is a topic of conversation obviously some think that since the end of my life is in the foreseeable future I would suddenly find some kind of spiritual belief and go against a lifetime of knowledge. Sorry to disappoint, but I'm still a staunch atheist and will be to the end. In fact, if at all possible I'm stauncher.

Some of my more humours agnostic friends have asked me to tap them on the shoulder if there is something on the other side, but since I feel they might have a tendency to be a little to eager to see me around, I've decided that I will only tap my other die hard atheist friends on the shoulder - these guys are less likely to see or hear things :o)

But seriously, this does raise the topic of my survival. I know that because I don't pray, or meditate, or spend my days with continuous 'positive thoughts', some of you will be thinking that I have wiped out my chances and if only I turned to the spiritual world I would be saved or add on extra years to my prognosis. A study done in Melbourne has shown what I thought would have been blatantly obvious that positive thinking makes no difference to surviving cancer and I add the same to prayer and meditation. The pressure that is put on patients to be positive all the time is just plain cruel. About the only thing staying positive probably will do is make life easier for friends, family and nurses - and in this matter I think I have a good attitude and am more than happy to discuss the whole cancer and dying issue to anyone who can handle it. And I'm happy to say that most can.

Then there is the other religion that seems to be completely faith based - the alternative health treatments. Having spent most of my life eating whole foods and avoiding chemicals I still managed to get cancer. I continued this health kick (except for my daily Gingernut fix) during my last bout of cancer but this didn't stop it returning. Another Melbourne study also debunk such things as Supplements and Green Tea.

Every alternative therapy that I've read about has absolutely no evidence that they work, yet the advocates talk like these treatments are miracle cures - they will advertise the case of one outlying patient 'that had been sent home to die' by the doctors, but had taken on this alternative treatment or other and survived. Never mind that they had been on chemo and radiation for that last year. Never mind that no studies are ever done on these alternative treatments. And never mind that they simply don't work - the pressure to pursue all this stuff is incredibly invasive and somewhat stressful.

But I'm starting to rave, so I'll sign off now :o)

PS: CT scan on Monday - so big day to see if the tumour is shrinking, or not. And no I'm not having thoughts (positive or negative) about this outcome - just simply a little nervous.

I don't get it

I'm struggling to understand how NZ First is actually still a registered party. Shouldn't they be struck off for not paying the money back?

Even if they do successfully find a charity to take the money, there legal obligation to pay the money back has not been met. I wonder how this will play out?

Mr Lineberry rises again

Yay! Elijah is back.

Brain Tumour Buddy

The strangest thing about this brain tumour complication of mine is that there are three of us Non-Hodgkin's patients with the same brain tumour complication - all came in the last month.

They think that is just because more of us a surviving quite aggressive Non-Hodgkin's with the R-CHOP treatment. Anyway, I met one of my Brain Tumour Buddy's (BTB) this week, so we spent the wee hours of the nights talking about our treatment, plans for the time we have and that we will beat the 3-6 month time frame. BTB is going for 10 years :o)

It was good to have someone that understands that it is terminal - most others in the ward are Leukemia patients and although some won't make it, they haven't been given a terminal diagnosis so generally don't think or talk about it.

BTB has a great attitude - full of energy, chomping at the bit to get out of hospital to sort out all his affairs so he can relax and concentrate of his treatments and enjoy his hobbies. He has teenage kids (which adds a stress I just don't let myself think about) so will be spending as much time with them as possible with them.

BTB lives close by (my soon to be completed) house in Mt Eden, so it'll be good to keep in contact.

Chemo #2

Well Monday I was up at the crack of dawn (god, how do you guys to it - totally unnatural) to get across town to Auckland Hospital for a PICC line insertion. Two hours later (due to really naff veins) and much bruising I came out with a much treasured PICC line and strict instructions not to stuff it up. I must say I was the model patient, forcing them to keep at it when they didn't want to. It was really quite simple, without the PICC line they couldn't do the chemo that day - no chemo, big tumour.

The rest of the day was spent having saline pumped into me so I bloated up like a big bloated, bloat fish. What with this and 3 weeks of steroids I can't even recognise myself in the mirror - have just stopped looking now.

About 10pm the chemo went in - 8gm of Methotrexate - they let that stew for 24 hours and then start on folinic acid to take the Methotrexate out again and help reduce the damage to my body. This continues until the Methotrexate level is <0.05 - then I'm allowed to go home. This happened yesterday, so I'm now happily ensconced on the couch at Mum & Dad's and enjoy the peace and quite of the countryside.

Apart from the boredom of being in hospital the chemo isn't too bad, slightly easier than the last time - doesn't seem to rip my intestines out - so I'm happy enough.

So I now have a week off and return for chemo #3 on the 23rd which also includes another CT scan, which will tell us if this is working or not.