Sniffy update

I saw the Doctor on Wednesday, to have confirmed what I was expecting, that we have kind of come to the end of any real treatment options. Can't have any more Radiation Therapy, so the tumours that remain and new ones will just be. Basically the Intrathecal and PEP-C chemo that I started this week will hopefully slow the cancer growth some and give me as much extra time as possible. On day three of the PEP-C and I seem to be tolerating it well - only slightly nauseous, only 27 days to go. The Intrathecal will probably create ulcers in my mouth, so will probably stop these weekly injections at that point.

The lovely Hospice Nurse is coming over next week to start discussing pain management and palliative care. Going to beg, borrow or steal one of the those lovely lazy boy chairs to recline on and enjoy MySky. But not at that stage yet, feeling remarkably good at the moment and look deceptively healthy. My cold has dissipated and I seem to be have the cough under control - although god my ribs hurt.

So, for the third time, I start the process of getting 'my affairs in order'. It seems no matter how much you try there's always something outstanding, but I've discovered that I just can't make it perfect.

So off to the movies this afternoon and will be ordering the works - popcorn, icecream and Snifters - damn no Snifters! My work here can never be done :o(

Update

Health
Just finished my 10th Radiation Therapy this morning. See Doctor on Wednesday to discuss next treatment(s). Steriods have really kicked in now, so turning into Michelan Man again. Feeling fine.

Movie
I watched 'District 9' this week. Really it deserves an Oscar for best film and best actor - never seen anything like this before - fantastic.

She's a winner!

3 Golds
1 Silver

Just like Usaine Bolt, Julia just ran down the track in an effortless style and won - very cool.

Results:
Tennis - Gold
Swimming - Silver
Running - Gold
Long jump - Gold

It was a fun time in Brisbane, nice and hot, probably a little too hot for the athletes. Great team was the NZ Transplant Team along with the supporters (see below). NZ pulled together 30 medals, 14 of them Gold.

The World Transplant Games Federation has been holding international sporting events for transplant athletes for 20 years. This shows how successful transplant surgery truly is and at the same time it raises awareness of the need to increase organ and tissue (bone marrow included) donation.

Update

Rather busy week, starting with a CT scan on Tuesday to check out why I had pain around my hip. As predicted the cancer has returned to the central nervous system (CNS) and the doctors asked me to come in on Wednesday to Acute Oncology to have an MRI and discuss immediate radiation therapy. They seemed to be surprised that I only suffered some pain and hadn't lost movement in my legs.

My steroid dose was increased from 4mg to 8mg on Tuesday night and the pain went straight away. On Wednesday it was increased to 16mg. The mood swings and appetite haven't changed as yet, but I imagine it will shortly - you have been warned.

Anyway MRI results revealed a few more tumours that the CT missed, three that were touching the spine, some that aren't. So I had my first dose of radiation this arvo and will have one each day until Monday. Then (fingers crossed) I can fly to Brisbane to catch the end of the Transplant Games, returning Sunday. On my return I will be given another five doses. It was great that they were able to accommodate my trip, I have been looking forward to it for ages.

Moral Dilemma #1

You have been given six months to live unless a suitable liver can be found. You are a strange blood type and five months have past - no suitable donor is found - the clock keeps ticking.

Finally in Wellington a particularly bureaucratic civil servant sticks his head too deeply into the trough, inhales and starts choking. He staggers around his sea view office and blinded by his own shortsightedness he trips over the his latest economic death legislation and tangles himself in his own red tape. An ambulance is called but he dies a slow, painful death on the way to the hospital, where they find his donor card and harvest his organs - a perfect match has been found.

Do you accept his liver?

Donate Life

Next week most of the Woolf females are heading to Brisbane for the 17th World Transplant Games. There will be 24 organ transplant athletes competing for New Zealand, my niece Julia being one of them. The main aim of the games is to raise awareness of the lives saved by talented surgeons using organs donated by individuals and their families.

I've been asking my friends if they are donors, most say they are, but when I ask if they have discussed it with their family members nearly all of them say they haven't. This I found extremely odd, as I've always known of my family's wishes and I would go out of my way to make sure that these wishes were undertaken.

I know discussing death can be a difficult topic, but it is important to tell your next-of-kin of your wishes. Just because you have "donor" on your licence, doesn't mean the doctors will use your organs upon your untimely death. They will always ask the family and ultimately your wishes will be ignored if the family have a problem with organ donation.

By talking to your next-of-kin, you will give them the knowledge they need to make sure your values are upheld at a time when you most probably can't communicate and at a time of extreme stress for your family. Knowing what you wanted will reduce this stress and people will usually honour a person by carrying out their wishes.

Blood donation
Most people I know don't donate blood. This is not because they don't want to, but because they lived in the UK during the mad-cow scare and the blood donation services have decided they won't take our blood. There are of course many other reasons why people can't donate blood and so arises a shortage, but of course you all know this by now, they don't advertise for donors for the fun of it. There are a couple of reasons for non-donation that can easily be avoided by following the "harden up" rule to life:

* needle phobia - if it hurts at all, it is only for a few seconds.

* fainting - relates to the above - apply the "harden up" rule and anyway you are lying down so there's nowhere to fall.

As I'm often in the Hematology department I watch bag after bag of blood being hooked up to grateful patients every hour of the day - the blood banks are often running short. If you're not donating then just think how hypocritical you'll feel when you land up in hospital with a bag of blood attached to your arm.

Same goes for non-organ donors - they cringe at the thought of giving their organs, but if they suddenly needed an organ themselves, they'd be fighting to get to the front of the queue.

Cost of Government Day

Today is the Cost of Government Day in the US. In other words:

"... the day that you stop working to pay for the total cost of government (spending plus regulation)."

If this doesn't horrify the US tax slaves, then the fact that in just one year this day has jumped - from mid-July (16th I believe) to 12 August - should make them shake in their boots - nearly a whole bloody month. Amazing!

Milton Friedman

From the great Milton Friedman an Open Letter to Bill Bennett on drug legalisation.

Milton Friedman - Brilliant Economist
Bill Bennett - Bush's Drug Tzar


Hat tip: Paul Walker

Legalise ALL drugs

Now I've been working on a blog for the last month in regards to ending the War on Drugs and legalising the consumption and trade of all drugs. But my ability to write is alluding me at present and sitting for more than 10 minutes is just too painful.

So here is a blog that says exactly what I think - thanks Peter.

B3 Bloggers Bar Bash

Don't forget it's drinks tonight at Galbraiths for the monthly B3 Bloggers Bar Bash. See you there from 6.30pm onwards.

122 slimey MPs on the wall ...

Now the politicians are trying to cut down on our drinking by making it more expensive and difficult to find, all in the name of saving us from ourselves because hell, I've made it to 41 and they know better than me - after all most of them haven't work it a productive job all their lives, but still this qualifies them to act like my Nana.

Now here's my theory why some (SOME I might add - not ALL of us) drink too much. We live in an unproductive economy, earning less than just about every significant OECD country. We are treated like a bunch of moronic, clueless children. The pathetic wages that we do manage to claw together is heavily taxed and handed to the most incredibly ungrateful bunch of beneficiaries ever. So the more money you take from us the less prosperous we are, the less fun we have, the more likely we are to drink and the more likely we are to drink cheap rubbish, which we all know makes you a horrible drunk. Russia being proof of this, in all it's depressing socialists regimes.

The more restrictions you put on substances, the stronger they become, the more they are abused. Drugs being the obvious demonstration of this problem all over the world and particularly in the US. Prohibition of alcohol early last century being another. But the mindless middle class just love trying to control the rest of us with their pious domination - its like living in society that's not run by individuals but run by the teachers union.

And don't you just love how the MPs think that we should pay more for our alcohol, of course it's not like the increase will effect their pocket given that they get us to pay for their drug high, along with holidays and living expenses.

Not PC, covers this insane proposal more eloquently and with just the right amount of profanity.

What is love worth?

Jack wakes up with a huge hangover after attending his company's Christmas Party. He didn't even remember how he got home from the party. As bad as he was feeling, he wondered if he did something wrong. Jack had to force himself to open his eyes, and the first thing he saw were a couple of aspirins next to a glass of water on the side table. And, next to them, a single red rose! Jack sits up and sees his clothing in front of him, all clean and pressed. He looks around the room and sees that it is in perfect order, spotlessly clean. So is the rest of the house.

He takes the aspirins, cringes when he sees a huge black eye staring back at him in the bathroom mirror. Then he notices a note hanging on the corner of the mirror written in red with little hearts on it and a kiss mark from his wife in lipstick: "Honey, breakfast is on the stove, I left early to get groceries to make you your favorite dinner tonight. I love you, darling!

"He stumbles to the kitchen and sure enough, there is hot breakfast, steaming hot coffee and the morning newspaper. His son is also at the table, eating. Jack asks,"Son ... what happened last night?"

"Well, you came home after 3am, drunk and out of your mind. You fell over the coffee table and broke it, and then you puked in the hallway, and got that black eye when you ran into the door. "Confused, he asked his son, "So, why is everything in such perfect order and so clean? I have a rose, and breakfast is on the table waiting for me?"

His son replies, "Oh that! Mom dragged you to the bedroom, and when she tried to take your pants off, you screamed,"Leave me alone, I'm married!!"

Broken coffee table $239.99
Hot breakfast $4.20
Two aspirins $0.38
Saying the right thing, at the right time ... priceless.

Weather, weather, weather ...

I was moaning about TV1's 6pm news, with the weather coverage just going on and on and on. I'm sure it must take up 15 minutes of the hour and is so dreadfully boring.

My brother mentioned that TV3 doesn't make such a meal about the weather, so that night I watch TV3 news and he was right, it was great, I think it probably only took up 5 minutes. They also didn't do those weird teasers that seem to make little sense to the actual news item - similar to those women's magazines teasers. Also missing from TV3 were the chronic spelling mistakes and strange sentences. They just seem to get on with it without all the fluff.

The week that was 'crap' - updated

Well the mouth ulcers have reached epic proportions, making my face puff up and of course eating no fun at all. Add to this a head cold of runny nose and coughing I am simply rather pissed off and unhappy.

However not to give in to all this too much, Em and I headed down to Rotorua for a good long soak in the hot pools and some massage therapy - fantastic - wished we had this kind of thing on our doorstep.

Off to hospital tomorrow for the last chemo - well last one of this course anyway. Might be given platelets as well, depending on bloods and hopefully a new mouth is available also - just can't believe the ulcers just keep popping up, over and over and over again, surely at some point the mouth falls out?

Update: Final chemo was cancelled as my bloods are too low and ulcers causing concern. Happy with this as I don't think I could continue much longer in this state. Anyway my spinal fluid has been running clear for long enough we all think. Fortunately my head cold appears to be clearing now also.

Looking forward to getting back to normal soon.

Ministry of Whining Affairs - Updated

I always marvel at how loyal National Party voters are to this left of central nonsense of a party. There doesn't seem to be anything the politicians do that upsets them.

Maybe this might do it (but unlikely)? Those trough guzzlers that are seeking jobs in the public service have been told of a rumour that jobs will be available at the Ministry of Women's Affairs. Apparently extra money is being sent to this abomination of a Ministry. God there really is no hope for this country.

Why feminists and lesbians support this Ministry is totally beyond me, it is just such a patronising and pathetic symbol to all woman. Why National supports it isn't really that surprising being the pro-government, legislate, legislate, legislate kind of people that they are.

It would be interesting to know the ratio of public servants to productive private jobs. It must be getting totally out of control with the number of jobs being lost in the private sector and very, very few job loses in the trough.

Update: Mark Hubbard informs me that "The number of people working in the private sector, compared to public servants and beneficiaries is something like 1.8:1.7."

Of course any halfwit can see that this is impossible to maintain, but watch them try. The only way to fix this is to abolish all unnecessary ministries, and start slashing and burning public jobs where ever possible and fast.

My suggestion? Vote with your feet and leave. Even in these economic times it's better to be on the ground where things will start happening than languishing in NZ where it never will. Such a shame, it truly has turned into a big retirement village where you come to die. If it wasn't the fact that I'm going to do just this I'd have been gone long ago.

Holey fricking moley

Other patients have complained to me over the years about the sore mouth that comes with chemo. I've had some problems, but never really anything to write home about. Usually just goes away after a few rinses of salt and baking soda.

But this time it's unbelievable. Eating, drinking, swallowing, existing is so uncomfortable. I thought I was being a bit precious when I presented myself to the hospital at Monday's chemo, but you could see them physically recoil and say "we haven't seen something that bad for awhile". Nearly every part of the mouth is effected - ouch!

So I now have little sponges on lollipop sticks for toothbrushes, about three different mouthwashes and a course of Fluconazole to try and get on top of it. Don't really feel much better, but food like rice pudding and custard go down a treat - well maybe not a treat, but with less pain. So I think I should just stay home as much as I can and try and build up some kind of strength.

I have chemo on Thursday and then only Monday for three weeks. The spinal fluids are still running clear of cancer.

Update: Oh my god, then I sneezed!!!!!

My Hero

Gisela Dulko knocked that screaming nightmare Maria Sharapova out of Wimbledon. The Telegraph describes this as the "Shock of the day", all I can say is Gisela you are truly a hero and should be given a knighthood for services to women's tennis.

Michelle Larcher De Brito is even bloody worse, we can only hope that she screams herself into a heart attack. Why the umpires allow this annoying mindless noise is beyond me. If I was playing against her I would have to slam my racket across the court at her. Jesus!

Updatedty Updated Update

Frick what a week last week was. Just after my last posting I was watching the Ambulance program 'Rapid Response' thinking they're kind of cute, gosh my shoulder hurts bad, let's give them a call, maybe they'll come out.

Well okay it wasn't quite like that - but after an afternoon of putting down continuously different pain killers I finally admitted defeat and asked Em to call the hospital to see if I should go to Ward 62 or A&E. My screaming caused them to say phone 111, which Em duly did and the lovely ambo team turned up. Out came the laughing gas to get me under control and stop the screaming - 10 puffs later, no pain - amazing! Unfortunately this stuff only lasts a couple of minutes so it was decided that admission overnight might be a good idea just in case the pain came back. So I got to suck on the juice of angels for a good 20 minutes and was rather chatty by the time I was admitted.

After a night of no sleep (god it's noisy there, nurses just stood outside the rooms talking in daytime voices that borded on outside voices), I headed home in the morning to have a shower and back to the hospital for #2 radiation therapy. Took Methadone for the rest of the week, which seems to work the trick for me. No pain now, and radiation therapy seems to be working a treat and my dead left arm is coming back to life.

Being sick is a busy life I would have you know. Was at the hospital 10 times last week, 6 for me and 4 for my flatmate who visited A&E twice on Wednesday night with an extremely painful eye - she didn't scream like me, but was in more pain. Anyway we are all fine now and I'm enjoying a more relax treatment schedule of chemo into the spine twice a week. This should go on for a few more weeks until my spinal fluids run clear of NHL.

Updated update

After a rather sleepless night I was dozing uncomfortably at 8am when the hospital phoned and said come on in for a consultation and possible treatment pronto. So bounced out of bed, into shower and stumbled into car.

So the day was spent in Acute Oncology being seen by the radiotherapists, being sized up for radiation and then my first of five treatments at the end of the day. Finish on Friday.

Rather painful now, so taken all the drugs I can take & just trying to get comfortable and waiting for 'Spooks' to start.

Update

Bad news from the MRI that I had Friday last week. It shows cancer on the C3 & C4 vertebrae and a lump under my arm. All this of course explains the massive pain and discomfort I've been having in my neck and shoulder.

In the meantime I've been put on 16mg of Dexamethasone every day and this killed the pain within 4 hours of my first dose - arh bliss. I wasn't going to handle all this so well being in that amount of pain.

Also I am on Methadone which works much better in pain reduction than Pethidine and unlike the Morphine doesn't make me throw up two or three times per day - a relief to finally get on top of all this - without the horrible side effects.

Treatment is unknown at this stage, still under investigation at the hospital. Will update you as soon as I know.