Sunday, 29 June 2008

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.

Friday, 27 June 2008

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.

Tuesday, 24 June 2008

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.

Monday, 23 June 2008

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.


Thursday, 19 June 2008

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.

Wednesday, 18 June 2008

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?

Saturday, 14 June 2008

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.

Tuesday, 3 June 2008

Bugger!

Well what a difference 3 hours makes in one's life. I literally met with my Haematologist at 8.30am on Tuesday the 20th to be informed that the latest CT scan had come back well and the cancer was still away. At 11.30am I had a seizure and was rushed to ED, followed by a CT scan of the head to find that the cancer has spread to the brain and is approximately 5cm in size. Fortunately my trading partner Marc was with me at the time and was able to get me to hospital rather promptly (poor bugger).

As you can appreciate a tumour in the brain is not good, treatment is difficult through the brain barrier, so I have to say that the odds of full recovery is only about 2-5%. The initial diagnose from the admitting doctors gave me a survival time of 3-6 months. However, they have been a little more positive than this since and we will look at this time frame again after my next CT scan in a couple of weeks. But in essence it is terminal.

I have had one chemo treatment already and another coming up in a week on the 9th of June. Following this I receive another CT that will show if I am responding to the chemo (or not). If responding then it is full on chemo (probably with steam cell transplants) and this should extend my time frame - no idea how long, it is just going to be a wait and see kind of thing.

So the first week I was fairly shattered emotionally and was suffering a very sore neck and was rather fuzzy brain, but feel much better now and the brain functions reasonably well (well no major complaints). So I'm back at work for this week and will drag my laptop into the hospital for the week of the 9th.

Sorry for the rather frank diagnose, but that's life and hopefully that chemo can get through to the tumour and I can push out a few more years - we shall see.

PS: that isn't my head scan - still haven't seen it. It sits deep in the left side of the brain and will probably cause right side motor skills problems, but shouldn'
t effect my personality too much :o). Well that's the theory so far.