A Cancer Meltdown


So a couple of weeks ago I felt like things were going OK. I had my cool car and whilst I was feeling really fatigued, I was coping. Then a pile of little things got the better of me. I was late with my tax (which I hate doing, because I normally do that at the end of the calendar year, when I was doing 8 weeks of radiation therapy and was too tired any other time. I’m between test results, so anxious about what the next result will be. My arm is really sore after taking the splint off my wrist from a thumb strain (which impacts on everything from using a mouse to playing guitar. Super busy at work and a number of other things, nothing that would be beyond the norm for any of us in isolation.

20160503_161554.jpgI had words with my wife, something that is very rare and after she left the music room, I lost the plot. I picked up my office chair and flung it at the floor breaking the base and ripping the carpet.

This was not good for our relationship and the following night I was away on business, which was probably s good thing to allow us to both cool down. It was totally on me and something I haven’t done since I was a teenager. I do not have an anger problem, it’s just one of the many emotions that you go through with grief and with cancer. Some people cry a lot (I only get emotional like that when giving speeches at weddings or when I’m watching an awesome concert). I might get slightly bloodshot in the eye when I’m passionate about something, but again that is when I’m happy.

So the following night I found myself in a hotel in Wellington after a 4:20AM start and a long working day. I sat in my hotel room looking out the window and pondering the meaning of life from about 5-7:00, went to bed. No dinner, no TV, a few SMS’s with my wife and slept for about 11 hours.

Bottom line, I really needed to let off steam. But I wasn’t finished and this is the good part. Right through summer when I usually write and play a lot of music, play a few gigs,  I couldn’t play, I had lost my mojo. Well after this exercise I got it back and over the last couple of weeks have written the backbone of a new song, which was the catharsis I needed.

Here’s what I’ve got  so far. It’s a country song, I really like country as a genre for telling stories. I hope to fine tune it enough over the next few week to start recording it, because I like the song as a song, not just a form of letting off steam.

If I Could Turn The Tables

Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

Verse 2

If I could turn the tables I’d unsay the words that I just said

I’d turn down the volume of the voices that keep crashing through my head

Sometimes I feel like I’m OK, then the doubts start to shiver down my back

I’ve got to climb out of this hole and find my way back.

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Verse 3

I’ve got a lot to live for and each day I add on to my bucket list

I have great friends and family, there are special dates that I don’t want to miss

Sometimes I just want to cry, sometimes I wonder what its like to die

Then I think of those I’d leave behind and find my way back

Bridge

Every day’s a gift

Every day’s a steal

You can’t be the driver

Unless you take the wheel

Take the wheel

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Repeat Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

-I’ll share a link once I’ve recorded it. It’s great to be back in writing mode and I hope I stay there. I’ve missed writing songs (other than my Pi project). I feel so much better having transferred my emotions into music.

I’ve been wanting to write songs about cancer to share, which might also help other people, be they the patients or friends and supporters. I have one other that I wrote but haven’t recorded yet, it’s more of a soul/reggae number which I wrote about losing my father in-law (also to cancer), but I thought I’d like to do a few covering different aspects.

Anyway, that’s me. Now I have to transcribe the song and publish it. If you’re still here, thanks for coming  on my journey with me.

 

Update and coping with cancer


It’s been a while since I last posted on this topic and I know some of you are more comfortable reading this than asking how I’m doing.

In a nutshell, I’m improving. My last test a couple of weeks ago was the first time my PSA levels have come down, although not as low as we need them to be. In 10 weeks I’ll have another test and we’ll hopefully see that it is trending down, which will mean tests every 3 months and I’ll be on the mend.

In the meantime I still suffer from fatigue 24:7 but not as bad as it was and when I’m busy and focused on doing things, I don’t notice it. But that also means that it is really easy to overdo it and if I have a really busy day at work, or even just at home, I pay for it.

I now have some nights when I don’t fall asleep at 7:30 or earlier, but it is still more common than not that my wife wakes me up somewhere between 8 and 9 to tell me to go to bed and off I trot, feeling ripped off both because I’m missing out on my time and our time and I feel bad about leaving her on her own each evening, while I trot off to sleep. It’s also frustrating that you feel tired all day whether you had 5 hours sleep or 12 hours sleep.

Anyway, what I’m focusing on is looking forward to things and trying to live in the moment. We have spent much of our lives looking to pay off our mortgage and reducing debt, rather than living life for today. Cancer makes you want to make sure you have taken care of your loved ones financially, but it also makes the bucket list more important. One of the things on my bucket list that I was confident I would never have is the new toy we bought.

carI have always loved Corvettes and now I have one and I love it. Hopefully my wife and I will have fun doing road trips and make lots of new memories. Living in the now isn’t easy and it is important to be financially secure if you can. It is also important to have fun and enjoy life, which isn’t easy when sometimes life feels like crap. It doesn’t have to be a cool car, it can be just looking forward to going out for lunch or catching up with a friend you haven’t seen for a while. It is important to have a focus that takes your mind off the fact that you have cancer. Doing things that make you happy creates good chemical reactions in your body and if you are creating endorphin’s that has to help your immune system.

I want to share a poem with you that reflects a bit of the feeling I had about living. It was written by Alistair Morrison and I hope I’m not breaking any copyright laws by sharing it.

Such a Good Boy

He never said ‘Die’ to the living

He never said ‘Scat’ to a cat.

He never said ‘Boo to a Kangaroo.

He never did this or that.

He always kept clear of propellers

Never spoke to the man at the wheel

He always said ‘thanks’ to people in banks

And always took food with his meal.

He never took umbrage, or opium

Or ran round the rugged rocks

He never missed school, or acted the fool

And always wore woolen socks.

He never sat on a tuffet

Or pulled out a plumb with his thumb

And never in churches left ladies in lurches

Or opened the OP rum.

He never pinched little girls bottoms

Or peered down te front of their necks

Considered it folly to covet a dolly

Or think of the opposite sex.

He never did anything nasty

He never got stinking or cried

Unmarred by one speckle, a permanent Jeckyll

With never a shadow of Hyde.

He never called anyone ‘Drongo’

Or even ate peas with a knife.

He never crossed swords with the overlords

Such a good boy all o his life.

When he finally died and was buried

His loving ones tried to mourn

They put at his head a tablet which read

“Here he lies, but why was he born”.

 

 

Returning Veterans in noncombat car crashes (Read Time 1:33)


Motor vehicle crashes are part of every day life and I have an interest in what causes them and how to reduce them. I’ve been listening to a podcast by Dave Wallace, the Traffic Safety Guy, called Highway to Safety.

From a Bradley to a Civy Street

From a Bradley to a Civy Street

Something I have heard of previously but isn’t front of mind in New Zealand because we are a small country with a small defense force, is what happens when you take someone who has spent 18 months in a combat zone, where they literally have to make split second decisions, and when they come home they pop into the family car to go out for a drive.

When we learn to drive, we learn to look out for animals, for kids running our from behind a bus or an SUV or for drivers of other vehicles driving their cars in an unusual manner, all of which are common day occurrences.

Now take hardened, combat ready veterans who have seen innocent looking situations turn into death traps, where sub second muscle memory instinctive and instant actions can save lives. That family pet lying on the side of the road at home could be a sleeping pet, but in the combat zone, could be a booby trap.

According to a 2009 Army study, quoted in the podcast, Iraq and Afghanistan veterans are 75% more likely to die in car crashes than the general population. In fact from 1999 through 2012, 4,423 active military personnel died in non combative crashes.

I can’t imagine what it must be like re-integrating between or after terms of duty, but it makes total sense that there is a problem and it is being addressed. A Home Safe, Drive Safe campaign is being adopted by the various sectors of defense in training offered to service people when they return home.

As you will hear in the brief PSA video by Nascar driver Richard Petty, more returned veterans die in their first year back home in motor vehicle crashes than for any other reason.

This is something I have never considered. We hear about all sorts of adjustments people have to make, but next time I hear of a returned soldier who has had a serious accident as a consequence of responding to a situation that would for most of us be a non event, I’ll be wondering if the have had that part of the debrief and are conscious that they are not in a war zone.

So from someone who has never been in that situation, but enjoys living in a free democratic country, I say “Thank you for your service, we want you to stay alive, safe and well.

If you have a story about this topic, I would welcome it if you would like to share an experience or comment.

On Ray Kurzweil and Thinking


I was reading a current article by Ray Kurzweil in this month’s edition of The Futurist and it got me to thinking a little. Here are a few random synapse connections from me.

He talked about how the digital neocortex will be be much faster than my wet-ware and that the roughly 300 million pattern recognisers in our biological neocortex will allow us to think in the cloud, using billions or trillions of pattern recognisers.  The IQ part of my brain thinks this could be amazing, although I would worry about dendrite overload or glutamic acid over stimulation, which is associated with conditions such as Alzheimer’s. It’s one thing to connect my brain or nervous system to additional memory, but to extend the processing in and out, is something that I think may require a lot of very careful study.

Earlier this week I wrote a blog about a potential future condition, Google Glasses Separation Syndrome. I recently introduced my daughter to the brilliant book, Flowers for Algernon which follows a similar thread. What happens when you expand a person’s capability to the point that it changes their existence and then potentially remove it again.

I noted that Ray perhaps doesn’t like driving very much because he talked about self driving cars alleviating the requirement of humans to perform the ‘chore of driving’. Sorry Ray, I love driving and so do a large percentage of the people I know. I appreciate that you now work for Google and they are pioneering driver-less cars, but I don’t want to live in a city where eventually the law requires hat the ‘network’ takes over my car. Yes there are benefits in road safety etc.  but with systems such as Fleet Management, MobilEye, and the incentives of PAYD Insurance the roads will become safer without requiring us to take our hands off the wheel.

So IBM‘s Watson won Jeopardy, cool. It is an amazing AI and I love that it is now being used to look for cure’s for cancer amongst other things. But if you start thinking about Watson, a digital neocortex and singularity, what about EQ? It’s one thing to be able to identify things, to be able to locate information, to be able to combine apparently disparate bits of data, but how about feelings, intuition, id and ego? These are the things that make us human.

I like where this is going, but I also want to keep that which is me. Watson might be able to write a hit song by understanding the formulas and this has been tried before. But the song I wrote about a boy whose father lost his job at the plant and asks Santa to find his dad a job, while his mother sits and cries in the bedroom, or the one I wrote about a guy who returns from a tour of duty in Iraq to find his best friend is now sleeping with his girlfriend, that brought tears to Desert Storm vets isn’t going to come from an AI. An AI may understand the chemical reactions of the brain and intellectually that these experiences can cause people to be sad.

The ultimate AI could use impeccable logic to say that humans are bad for the planet, they are frequently illogical, their emotions cause them to make bad decisions and basically shouldn’t be here. Perhaps when Watson really ‘thinks’ about cancer, it might determine that humans are in factor a cancer on this planet and should be booted down. Then we will be left with the singularity which will contain all information, ask why and then boot itself down because having access to all the information in the world, does not impart any meaning.

 

Census 2013 So What Did You Think?


CensusOur household did it online and I have to say it was a smooth and easy process. The questions we didn’t have to answer were grayed out and we were all done and dusted in no time. Hopefully this means that finally we can hold referendums and vote online in future.

However, to me it was a major missed opportunity to learn more about who Kiwis are, what they do and where. This seemed to be to be simply a modern version of the feudal system where nobility tried to establish how much tax they could claim from their citizens. I love the Census system, always used to use copies of the books the Statistics Department used to put out and have been a keen user of the tables and tool builders on the website over more recent years. This Big Data has a huge impact on where to do business, where to build shops and factories, schools etc and the potential to not require costly double ups of data collection as will remain necessary for many Government organisations.

Here are a few thoughts from me of things that I would have liked to know and would have been easy to include and a few comments on what was included:

Ethnicity. For a country that is so multi-ethnic there were only 8 ethnicities offered and one of them was New Zealand European. That effectively makes it a political question and one that does not allow qualitative or quantitative research. As anyone who has studied statistics knows, most European Caucasians will  select the first option, leaving us with skewed data. How about culture. I know people who will register as Chinese because they look like their ancestors, but were born and raised in New Zealand and in most things they do other than appearance are indistinguishable from any other NZ born person. On the other hand there are people who totally live the culture of their family and do not integrate much with our everyday society.

The question on what languages you can have a conversation in, was easy for people who really don’t speak English, to say they do. This to me is important because we know there are now large numbers of people who will struggle to answer a question like “where is the nearest dairy?” in English.

What is your religion? This to me is very old school. You either belong to a sect or you have no religion. What if you are agnostic, spiritual but don’t belong to a particular church? This would effectively assume that if you have no religion, you do not believe in a higher spirit, God if you will.

I would have liked to know what people’s jobs are. As a futurist, I’m aware that many of today’s roles or job titles didn’t exist 20 years ago and it would be very interesting to be able to identify shifts in trends in employment. Yes, this information is available to IRD, but I want to know these answers and you could argue the same about the table which asks about personal annual income.

The employment questions also didn’t support all options. For example, I am a founder in a couple of start-ups. I am not an employee and I do not draw any money from the companies. I work very long hours in them. But I couldn’t answer the how many hours do you work in your job, because I’m not employed by the companies. These are not family businesses or family farms, although we do have a project creating virtual pets. Because I don’t have a ‘job’ all the options below these questions were grayed out. I was left with the questions of did I apply for a job and if so, how. BTW I also do not get any sort of benefit from the Government.

The only questions on health focused on disabilities that stop you from earning money or require a benefit. Wouldn’t it have been interesting to get more information on conditions such as asthma, diabetes, ADHD, Autism, Cancer etc. where people continue to work or study. Not so much from a single point in time but from a trend perspective. Tie this into geospatial mesh blocks and area units and some very interesting information might have emerged. What about depression and mental health? If we were able to see statistics based on location, what discoveries might that lead to? Perhaps ones that Government doesn’t want to reveal?

They asked how many cars were available to the household, not how old they were, how often they were used, how big the engines were, whether they were NZ new? Yes, again I know this information is collected by other Government agencies, but it is not made available to the public and business in the same way.

Question 32 would have appealed to teachers. In the last 7 days did you work for pay, profit or income for an hour or more. Novopay anyone? How many people worked but haven’t been paid? Many have waited much more than a week, I’ve heard of people who still have pay overdue for months! (No I am not a teacher).

What else would I like to know?

  • Do you have a land-line (that has dial tone)? Because in the event of power outages like earthquakes, they often still work.
  • Do you have a broadband connection? VOIP?
  • How many computers do you have at home that can access the internet?
  • How many mobiles do you have in the household that are connected? How many of those are Smartphones?
  • How many hours a week do you spend: Playing Sport or other outdoor activities? In club or organised activities? Watching TV? Playing computer games? On social media?
  • Do you BYOD to work and use it for work purposes?
  • How often do you buy fast food or eat out?
  • What about savings? What do people do with their money? Are they part of a super scheme like Kiwi Saver? Do they buy stocks (Mighty River Power would like to know)? What was the last big purchase in the last 12 months?
  • How about leisure, do they go away for a holiday? In NZ or overseas? Can they afford one at all? How long for?

There are many more questions that could have been asked like, how easy was it to complete this online? Would you be happy to vote in the next elections online?

So in summing up, its great to finally have a Census again and I’m looking forward to finding out what has changed in New Zealand, particularly as a result of the Canterbury earthquakes, but also information like how many NZ born people have left the country permanently, what is the make up of this country today compared to the last Census.

Congratulations on what appeared to be a smooth online operation, but what a missed opportunity to get some more learning. I think there has been so much focus on finally getting the job done, that there was insufficient focus on getting some highly important and valuable new data. The world has changed so much in 5 years. It appears like Novopay, that not much else has when it comes to taking advantage of 21st Century technology.

What do you think?

Workplace Bullying in Christchurch


Further to my blog this morning on how people are, or are not coping with stress from the aftermath of the Christchurch earthquakes, we are now hearing stories of increased workplace bullying in Christchurch. I don’t know how much it would take place normally, but this is another example of ordinary people being stretched to extraordinary limits.

According to a story published in many media this week, the stress levels are as high as would be found in a war zone. An AAP story says that scripts for sleeping pills and anti anxiety drugs are up and many people are self medicating with alcohol often resulting in violent incident, domestic and otherwise. Women’s Refuge reports a 30% increase in demand since the February earthquake.

A poll in The Press established that only 38% of people in Christchurch don’t want to leave. Of course as I mentioned in my blog yesterday on  Post Traumatic Stress in Christchurch, because of mortgage commitments, and the logical lack of buyers, many people can’t afford to leave if they wanted to.

Meanwhile Prime Minister John Key is still unable to say whether a decision will be announced this week on which streets or  suburbs will not be rebuilt.

Here’s another every day view from NZ Herald TV, brushing your teeth with lemonade because there is no water.