Update

Started CEPP chemo on Monday (Day 1) and just finished Day 3. Back to hospital for Day 8 next Tuesday and then nothing again until Day 28 when it starts all over again.

Yes I know this was earlier than first indicated, but I was getting more and more tired and was worried that the pain was going to come back, so thought I'd just get on with the job.

Feeling good and heading up north with the family for the long weekend.

TTFN

I'm back!

Sorry for the silence on my part, since coming back from Fiji I've been in somewhat of alot of pain, which meant going on some morphine based pain killers which meant I was nausea, which meant I was vomiting, which meant I felt bad.

However the pain has subsided now and I'm getting my appetite back (lost 6kgs in 2-weeks) and can communicate again.

Had a CT scan of my head, chest and stomach. The brain tumour is just about non existent now, but I have three new tumours, two on my lung and one under my arm. So I will be taking on some more chemo starting on the 4th of November. Fortunately, it is all outpatient stuff on a 28-day cycle. So we'll see how all this goes - I never seem to have much problem with treatments so hopefully it's the same this time. Anyway I can stop the treatments whenever I like.

Guest blogger #3

This has got to be the hardest thing you could ever have to do. I really want to write something to/for my sister Anna. How do you do this when you know one day you will not ever be able to talk to her again, moan at her, laugh out loud with her, get annoyed by her, sit and have a wine with her – a drink I mean. Okay and a whinge. All my life you have been there through thick and thin cliché, cliché, cliché. I have no idea how I am going to feel when you are gone but I do know that right now this whole thing is unbelievable.

Seriously Anna – no-one can write down clearly what they think – they don’t know what they think as it is too hard to think – way too hard. So if there is anything I can do, should do, you want me to do or not do – just let me know.

One thing I will never know is 'will the dog miss you so much too?'

AIG - welfare pigs have nose in trough

I heard a rumour last night that there was private capital prepared to take over AIG, but the AIG boys scuppered all attempts because they didn't want to lose their jobs. This doesn't surprise me at all - bloody corporate welfare recipients all of them. They stuff up what was one of the safest and stable companies and expect the taxpayer to foot the bill. If you were a US citizen you'd be looking for an exit. But don't come here this country isn't going anywhere fast - try Hong Kong.

Not PC sums up the situation best here!

The Markets

Loving this market correction - have been waiting for it to happen for over two-years now. For you non-shareholders, you should be starting to read up on companies and markets and look at putting some money in - these corrections only come round every 20 or so years and provides a perfect opportunity to get in. No rush though I'm sure there will be more pain to be had, but some sectors will bounce back quicker than others. First step is to open that brokerage account.

My advice is make the investments directly into the markets yourself - none of these investment funds/unit trusts - they rarely beat the indexes and charge you large fees for the privilege. If you not sure which individual share to buy then look at Exchange Traded Funds (ETFs). The management fee is low and allows you to invest in industries or countries that are otherwise too difficult to access.

I'm totally jealous that I won't be around to ride this one.

Guest blogger #2

This blog belongs to Anna but since you are all reading it and she is on holiday I will address it to you (which puts her in third person). My apologies for being so rude – Anna’s friend Jaqui.

Talking about death is hard – we’re unpractised and unwilling for it to feature in our lives. When someone has been told they have a definite timeline on this earth – it becomes something we reluctantly consider. We think about their death and then inevitably ours too. All my attempts so far to discuss the topic in a meaningful way have ended up sounding trite.

Anyhow, this is how it went for me when Anna called with the news that she had Non-Hodgkin’s Disease. At first, I was thrilled to hear her voice as we hadn’t spoken for some time. So I prattle on until she calmly states the reason for her call. Afterwards I am quiet for a long time. I remember thinking “some sort of religious framework would be helpful right now”.

I knew it was serious but I had a friend who had survived this disease and I knew of others too so I remained optimistic. Well, actually, although I thought about the fact it was a possibility she could die - it didn’t really register - it wasn’t real. At least not until an email arrived months later after she had collapsed and been taken to hospital – on the same day she got the all clear from the doctors. “Isn’t that unreal?” I keep repeating to myself “…on the same day!”

With this news I feel completely ineffectual in terms of how I might help and waiver between disbelief and being upset – trying to approach it all pragmatically. But I’m all over the place. I have heard that a number of terminally ill people experience severe loneliness as many friends and relatives stop or limit contact because they don’t know what to say or don’t want to intrude. This is not the case with Anna. She has dozens of people who want to “be there”. I try to find a way to be there too in a way that will not cost her a lot of energy and I know to limit my “helpful” suggestions. On one visit we talk about how strange it feels to be having so much communication when we generally make contact once or twice a year. I am careful when I ring not to talk twaddle. Nor do I want to ring and be morose or too chirpy but I do want to talk with her and stay close by. I definitely care but it’s awful to ask “how are you?” and in this sense the blog she has been publishing is helpful. The fact is that everything I do say sits alongside the reality that my friend is dying. Nothing seems appropriate or even really matters. My difficulties at work are trivial. My plans for the weekend or even next year... who cares? You get the picture.

I have thought about what it will be like knowing that she isn’t there and I just can’t. She always has been there since I was a younger version of the me I am now. It’s a long time but I haven’t actually changed much in that 25 years and I don’t think she has either. I can remember lots of things she said that made me laugh or sometimes even gasp in horror at her different take on the world. It didn’t matter that we didn’t always agree – Anna was rock solid and straight up. For a long time she and I pursued careers that were at best non-linear and unpolished. I derived a certain degree of comfort from this fact that I wasn’t alone so I do think it’s crappy that just as she really finds her niche in the business world this happens.

Much respect to Anna for nudging me get a grip by sharing what has been happening to her. It’s really helpful when people do talk about their death. I am going to get things sorted, make a will and if anyone I know gets sick I’ll talk to them about it – if they want to.

It’s a dual task remaining optimistic and being realistic. I’ve reached the stage where I am aware that this probably won’t be a miracle story. It doesn’t seem right but at last it seems I have accepted that it is so.

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Bula from Fiji. It's sunny, tropical and hot. Off to sit by the pool. Hope it's raining in Auckland :o)

Whew!

After a couple of months of testing for cancer and weeks in hospital for liver complications, the unstoppable Julia has come up clear on last weeks Melbourne PET Scan and Bone Marrow test.

As you can imagine this is a huge relief for all the family and anyone that knows my full-of-life niece. Stress levels have dropped and we can all take a huge sigh of relief.

For anyone who's had the pleasure of meeting Julia they remember a kid with a fantastic sense of life and easy humour - she will go on to remarkable things and will be remember for amazing feats.

Big hug Jujus.

Busy, busy ...

Well it's been a rather busy week, popped over to Melbourne with Mum and Yoke Har & Julia for Julia's annual PET scan - no results back from this scan as yet, waiting, waiting - very impatiently I might add!!!

Also went to see my cousin and his family who now live in Melbourne. It's great to see them happy and successful with two cute little girls with characters to match - a real credit to their successful parenting.

It was a whirlwind tour of just two nights so arrived back rather tired, but all well worth it - especially as I was able to buy Season Four of 'House' - very happy about that as I needed another fix of Hugh.

I have started to make up milestones I'd like to see - surviving to see Season Five of House is one of them, along with seeing P.J. O'Rourke who apparently is coming over in November for the CIS annual dinner. Obviously Xmas would be good and my 41st would be even better. But in the meantime I head off on holiday to Fiji on Wednesday for 6 nights - yay - never been there before.

Also managed to survive a Housewarming Party with a 1am bedtime - great to see everyone there and a success if I say so myself. Thanks for all the presents - if we haven't thank you directly it's because we had quite a few with no cards.

The house is now officially open.

Guest blogger #1

Fortunately for me I have great friends and family that are prepared to talk to me about dying. I'm aware that some would rather not hear it, but hey it's good for me and ultimately I think it's good for them. But the discussion rarely goes to how they feel about me dying and the emotions that they go through - I'm sure they are trying to protect me (no need, I'm not a wuss) and I'm now more than ready to find out. So I am inviting guest bloggers to share their views.

If anyone wants to put their views, just send it through - love to hear from you - you don't even need to know me.

First up is my great friend and supporter, the lovely Carol ...

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I am delighted to be invited to post a wee piece - as guest blogger - for dear friend Annie Fox! But that doesn't make it easy to write.

Our story: Anna (her real name) lived with PC and me (CP) for several years. Now, living with a couple is not often an easy arrangement but the three of us muddled along very happily together.

We parted our flatting relationship as firm friends - moi as her life long hairdresser (yes, I'm the Carol responsible for the latest shave to the head!) and PC as her architect and fellow political compatriot.

In between permanent jobs, I'm now in the truly fortunate position of spending a little time with Ms Fox as her sometime driver, fellow massage-mate, and No.1 tea maker -- for as long as she'd like ...... and long I hope it will be!

But as often happens when you're faced with the realisation that someone you're close to will not always be just around the corner, thoughts are triggered about life and the profundity of it.

My thoughts (some of them) have been on motivation, particularly Anna's unyielding display of self-motivation. Every single thing we do in life leads us to do something else more successfully, more creatively or more productively. Every road has a destination. So what motivates someone who is terminally ill to do anything?

I appreciate the cathartic value of sorting out one's affairs in advance, but how Anna has the motivation to jump out of bed in the mornings beats the hell out of me. But jump up she does, and we're out each day on a mission or adventure!

And would I want to know if I was the one with finality ahead of me? Doctors these days are as up front with prognoses as we're said to want them to be, but do we really want to hear this news?

I won't say Anna's inspiring 'cause she said I'm not allowed too -- as she says: 'I'm not being inspiring, I'm just facing reality' -- but Anna's relentless reality-focus, her refusal to fake reality, is something few, if any of us, ever master, and it's something to behold. It's this character of hers that forms part of my reward for spending time with her.

Now, let's make no mistake, for all the uplifting tales however, this is not a feelgood story. It's an absolute tragedy, and there's no softening of the blow as time passes. But Anna, I have to say this, you're an absolute darling to spend time with -- here's to our next adventure!

Working Bee

Yesterday we had a big working bee at home to get the landscaping finished in double quick time. At one point we had 25 workers and the whole place was finished and looking fabulous by the end of the day (photos to follow) - a bit like Mucking In, but without the cameras. We just need a new fence built and then we can lay the grass and finito - wonderful!

Thanks soooo much to all who helped, both Emilija and I very much appreciated the energy exerted and the time sacrificed on our behalf. Especially big brother Allan, who helped us buy the plants, plan the whole thing and organise the troops, mammoth effort all round - we love you all.

Hope you enjoyed the food & drinks, you were here so late we must have done something right. Also hope you aren't too achy today - I know I am and I didn't even do anything.

The little things that really piss me off!

My brain function has changed somewhat - I get flustered very easily, which I suppose isn't that unusual for me, but I now rave every time it happens. Poor Emilija has to listen to me rave at the TV all night - suppose it has its humours moments, but when I start to repeat myself that I get worried. Maybe I've got torettes :o)

But I thought I'd share with you some of the things I've been raving about for the best part of two weeks - all very minor really, but hey they're always the most annoying aren't they ....

Median Strips: The median strip is designed so drivers that are turning right across the road can sit whilst they wait for a gap in traffic. Too many of you pull into it at the last second, leaving your butt sitting out in the left lane so no one can drive past. Don't do this - it's really bloody annoying - start moving into the median strip as soon as you start to slow down (yes you are allowed to). Then you are out of the way and traffic doesn't have to slow down for you and in many cases stop.

Indicating: New Zealanders (particularly Aucklanders) just can't seem to indicate to save themselves and the ones that do only do so for a maximum of 1-second. They seem to be of the opinion that other drivers are psychic and automatically know what their next random move will be. Mind you having psychic ability wouldn't help much as there rarely seems to be any conscience thought granted to their driving. For your information you are meant to indicate for a minimum of 3-seconds. And for the record, no I don't believe in psychics.

Net curtains & blinds: Everywhere you look there are net curtains or blinds or curtains blocking out all the sun, so houses are damp and smelly. Please open up your houses let the light in and live healthy. No wonder we suffer from Asthma and mouldy houses. Stuff trying to insulate all the houses in NZ - just let in some healthy sun each day and fresh air and we'll save the taxpayer 1-billion dollars. And that's another thing that pisses me (and housemate off), we've just spent a small fortune on insulation and heating for the house and now we have to pay for the every other blugger to have their houses done. At least by dying I won't have to pay for anymore of this kind of crap (see it is torettes) and most of the rest of you support either Labour, National, NZ First or Greens so it serves you right - you voted for it.

Privot: You see it everywhere - especially on Council and Transit NZ land. This is a weed, it spreads like wildfire and smothers any plant or forest it grows near. It is not suitable as a hedge and it is not an attractive tree for your garden - kill it.

Toothpaste ads: I don't know why - they just really, really annoy me. And they must all use the same advertising company.

Kissing pets: They seem to have stopped showing owners and pets touching mouths in adverts, finally. But why people kiss their pets or let their pets lick them is beyond me - surely they must know where their pets mouth has been. If you do this vile activity you should be required to have a warning tattooed on your forehead, so I can avoid kissing you.

I'm sure there's plenty more that I've temporarily forgotten about - I'll get them off my chest as they come to mind. What little things annoy you - go on entertain me?

Daffodil Day

On Friday we have The Cancer Society's Daffodil Day.

Just thought I'd give you all an easy link so you can donate - or not - no pressure.

Hair today, gone tomorrow

Just when I was wondering if the radiation was actually doing anything to my head, my hair fell out - so Carol got out the buzz cutters and I'm back to the commando look. I kind of look like this photo, but add on a gazillion kilograms and a big moon face and you'll get the picture - but not from me - I'm now advocating censorship.

I can tell you that cancer treatments is no beauty spa. What between the steroids, chemo, radiation and biopsies - I'm looking a little worse for wear. The only plus is the steroids make ones skin very smooth - just like a babys bottom. Fortunately for me I don't have to look at myself - tough luck for the rest of you.

Why not?

Not a bad week actually. Have finally settled in to the house both physically and mentally. And also settled into the short life mentality. Had a couple of weeks of feeling rather sorry for myself with thoughts of 'why bother' about lots of things. But had a long meeting with my Haematologist on Thursday and talked about many things including just getting on with doing whatever and not worrying about the 'why' all the time. It was a great meeting actually, just what I needed at that point and I came away feeling less like I was eminently about to kick the bucket - which of course I'm not.

So this week in the pursuit of my new philosophy called 'why not', I had a long massage at Bliss. Have decided that dying whilst having ones feet, hands or head being massaged will be the ultimate. As opposed to just holding my hand, which will quite frankly just piss me off.

Yesterday I saw The Dark Knight with big brother at the Gold Class lounge. Very good movie actually, made even better by paying $30 per ticket to have food brought to my reclining leather seat - arhhh bliss all over again. Also had a very fine lunch at One Tree Grill - well worth a visit.

Olympics has occupied some of my time, but not enjoying it as much as I thought I would, although loved the cycling street races and of course the gymnastics. I see that the Chinese have taken on those incredibly annoying slapping tube things that the bloody netball fans use here in New Zealand. Being a libertarian I'm not in to banning as a rule, but that f*ing contraption should not only be banned but come with a death sentence. It has completely ruined netball in this country and if it continues will ruin most every sport in the world. Now it's typical when you gather woman together en mass that they turn the situation into a screaming, ear-piercing, witch-like noise fest. But when men are doing the same thing, you know we are all going to hell in a hand basket.

Treatments all over

Well that's it, it's all over, I've had all my treatments. So apart from the odd catchup with my Haematologist, I can try and avoid hospitals for awhile - yay!

Actually thought I would be devastated that I couldn't do anything more to abate this cancer, but actually feeling okay about it. Apparently I will feel somewhat worse over the next couple of weeks due to the radiation, but it has been easy so far - just somewhat tired.

Spoke to the Radiotherapist about what to expect as the cancer takes control. Will have headaches and some nausea and loss of motor skills. But mainly I will become more and more tired and want to sleep all the time and eventually just stay in bed - actually sounds quite peaceful.

Today I met with the lady from Mercy Hospice to discuss my care as the cancer takes hold. Very comfortable with the services they offer and good to know that there is back up for when it gets difficult. They have nice newly renovated facilities at St Mary's College on College Hill with spa pools and massage facilities - oooh.

Strange things

Knowing that you are about to die is the strangest thing to live through. All situations and conversations take on completely different meanings.

Like the other day the administrator at daystay phoned me to book two appointments with my Haematologist. One for the 14th, one for the 26th. She said she wasn't sure if I would need the second one, but we'd book it anyway as the appointments are hard to get. Now normally one wouldn't think anything of that comment, but when you are terminal your first reaction is to think, why don't I need the second appointment? Don't they think I will make it that long? Stupid I know - she wouldn't even be aware of my status - but rational thought goes out the window at moments like this.

Other strange things:

* Wrapping up your business and personal affairs so absolutely and completely that there isn't anything really for anyone to do after you've gone. Quite satisfying I must say, but still very weird.

* Saying goodbye to friends that have visited from overseas or outside Auckland knowing that you will never see them again. And just pretending that like everything is normal - what else can one do - weird.

* Suddenly lacking sympathy towards others problems. It's so disappointing that people can't be happy with their lives - it's hard not to say "just shut up (or something stronger) and enjoy your life". And even if I did say this it wouldn't make any difference.

Radiotherapy

I started radiotherapy yesterday - so 2 down, 3 to go. Feel fine, not nauseous, not too tired. Procedure takes about 30 minutes from arrival to leaving.

Only side effect so far is that typing has become rather difficult, but probably more an effect of the tumour than the treatments. Obviously this makes it difficult to type this blog - but hey you'll just have to put up with mistakes and hopefully I can make myself understood.

So overall doing quite well. I had a couple of minor seizures last Saturday, the doctors upped the steroids and I've had no more since.

The house is coming into order and it's nice to be snuggled up in my room on my soft new bed.

My biggest stress is my inability to drive and the subsequent lose of my independence - it really is something I can not get use to, no matter how hard I try to rationalise it. It's also the main reason for my moods, but we battle on - or rather everyone else battles on. Am looking forward to the Olympics to keep my mind occupied.

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.

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.

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.