I’m in remission, Life List and moving forward


lava lavaSo I’ve just been told that I am in remission:) My first question was, what does that mean? I always thought it meant something like being cancer free, but my oncologist said that once you have cancer, you are never cancer free.

So what does it mean for me? For now, no more drugs and tests for 3 months (that’s the second lot of 3 months now) and that in itself is a big relief. I’m still getting my head around it.

I don’t want to write about my cancer as such other than a brief update and perhaps to help others on a similar journey. My fatigue is way better than it was and I am able to stay awake longer than I was, almost normal, although I still nod off if I am in an easy chair, but I am no longer fighting to stay awake at 6:30 PM, (every night) or playing Candy Crush to force myself to stay awake.

I do still tire easily, especially on long work days or trips, but it is getting easier.

RescueI am still not producing cortisol, which is really interesting when you are on a rollercoaster that suddenly races off at a great rate of knots and everyone around you screaming and you’re thinking “hmm this is entertaining”. Or lying upside down in an ocean kayak, in a current thinking “This is interesting, I suppose I should pull the ripcord on my sprayskirt and get out so I can breath”. But I am aware of where I am at and much more cautious when it comes to driving if I am tired, or not looking at my mobile while I walk on the footpath and especially crossing the street with so many red light runners (3 just yesterday as I was going to buy some sushi for lunch).

I meditate every night using the Headspace app, which has been very helpful, especially with sleep and the way I respond to situations. I’ve been doing a lot of work on my values and what is important to me, which leads me to my Life List.

I am listening to The Hidden Why podcast, by Leigh Martinuzzi frequently (amongst many others), which I recommend, he’s pretty good for an Aussie (sorry mate) and a prolific poster and traveller on the topic of Why, which is pretty much the key to everything, right?

Recently he interviewed Danny Dover who wrote The Minimalist Mindset, which I am currently reading. I got it for a minimalist cost on Amazon for Kindle, but I’m tempted to buy a hardcopy as well, because it is the sort of book you want to read with a real highlighter and Post-It Flags, rather than virtual ones, because they are easier to use. In fact I might buy a few copies to give away to friends.

national steelSo I’ve had a Bucket List which I revisited since I was told those three words ‘YOU HAVE CANCER’ and some of the things I wrote about were things I wanted to have, like a National resonator steel guitar, which really doesn’t matter to me, and a Corvette, which does.car

But what Danny did to help himself out of severe depression was create a Life List of 150 things he wanted to complete within a 10 year period and they are values focused and I was inspired to do that. So I officially started that list today and am part way through reading his book.

I’ll blog about the Life List separately because it will be part of my process and I hope it will help other people to focus on what matters to you rather than ‘stuff’ to have or own. I’m also going to work on it with my wife, although there will be things that matter to us and things that matter just to me, so there will be overlap.

It’s a shame that it takes something like having cancer to wake us up to put more effort into life, not that I haven’t put a lot of effort in, but there are many things I could have done better, and many different paths I may have chosen. The important thing is my focus on a future based on my values and I am very clear on what they are. So today on 8 August 2017, I am starting my 150 item Life List of things I want to complete by 7 August 2027.

I have started item 1 and if you want to know what it is, watch this space. It’s pretty cool IMHO.

Humor is the Best Medicine


Check out the great guitar playing on this video. As to the song, it reminds me of the week when I read the definitive book on prostate cancer. I had to but wish I hadn’t. Great lyrics though.

Remember Reader’s Digest’s Humor is the Best Medicine? Yesterday at work a guy came up to me and said, I can’t help you with your cancer, but I can make you laugh, would you like that. I said I would and he proceeded to tell me some corny jokes and I felt better for it.

I’ve written a couple of songs about my cancer journey so far. I haven’t got the energy to record them yet, but watch this space. Music is very much a way of dealing with issues, whether you are a listener, a songwriter or composer. It is cathartic.

As to my journey, in short, I had to stop taking my drugs because I stopped producing enough cortisol which along with the cancer drugs caused fatigue which has had me sleeping very long hours and having to take time off work. I am now also anaemic and they can’t tell me why. It’s not iron, it’s to do with my red blood cells. I also became intolerant of fructose and lactose, which doesn’t give you a great number of tasty diet options.

Anyway, my oncologist told me around Christmas to stop taking the cancer drugs until we figure out what else is going on and referred me to an endocrinologist. When they didn’t ring me, I rang them and they said “The soonest we can see you is 10th of March!”. So I’m thinking, no cancer drugs, all I am really good at right now is sleeping and I feel even more tired when I wake up than when I lay down and I have to wait nearly 3 months to see someone while those tumors could start growing again. So I rang the clinic every day or two and yesterday managed to get a cancellation.

So on Monday I will go and fill another bunch of bottles with blood and wait for Greenlane Hospital to ring me to arrange a test that sounds a bit like hooking me up to a line and shooting adrenaline down it to see what happens, because my fight or flight has become sleep or creep.

I’m very grateful that something is happening and hoping for some answers and feeling embarrassed and humbled when people far worse off than I am give me words of encouragement .

Meanwhile I am also looking forward to Relay For Life in March. I don’t know how much energy I will have, but I’ll be doing as much of the 18 hour walk with team Early Birds as I can at the Millennium Centre on the North Shore on 25th and 26th of March. I am so grateful to my family and friends for organising the team, tents, clothing and everything because I don’t have the energy for it. Of course they aren’t just doing it for me, we all have friends and family that are fighting or lost the battle with cancer and each person in the team is there for a bunch of people. We wear their names on our clothing.

This is raising funds for cancer research (and NZ is a world leader) where every single cent goes to the research, nothing goes to administration and everyone involved volunteers or pays for the privilege of being there. Buddy, if you can spare a dime, maybe $5, please go to this page. If you live in New Zealand, even your $5 is tax deductible, so the charity gets the lot and you get some back. That’s pretty cool right?

EarlySo here’s the thing. One in three people in New Zealand will get cancer in their lives.

Let’s try a little game:

Take everyone in your office or flat or home and line them up. Get each person to call out a number, 1, 2 and 3. Then get all the 3’s to stand on one side of the room and the others to face them.

Stand there for 3 minutes and look at each other and think about what it would be like if those 3 people had to battle cancer and how that would make you feel. Then put yourselves on their side of the room and think about how it felt when the doctor said “You have cancer”.

iphone-140Then think about what if you could help reduce that number. Relay For Life is helping fund some leading edge research such as treating cancer like a virus. Imagine being able to take something like an antibiotic and the tumors just magically get flushed out of your system. Those people are being financially supported by you encouraging us to walk in circles throughout the night.

 

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”.

 

 

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?

You Have Cancer


At the closing ceremony of Relay For Life on Sunday at the Millennium Institute in Mairangi Bay, Auckland, New Zealand, we were told these are the worst 3 words you can hear in your life. As part of Team Hope Fighters, I was one of a group of awesome people who raised funds through a variety of activities culminating in an 18 hour walking relay. Our group walked the equivalent of Auckland to Blenheim and the full compliment walked the equivalent of Auckland to New York via Los Angeles, collecting over $120,000 for cancer research along the way.

Team Hope Fighters

Team Hope Fighters

I lost my first friend, my best childhood mate to cancer at the age of 9. Since then, like most people I have lost lots more. My grandmother, my father-in-law (who was a past President of the Lost Chord Club) and many more. I have relatives who are survivors and one who has only recently found out they have cancer and who didn’t want to tell me.

Relay For Life is a poignant event, which starts of with a Survivors Lap, lead by people who are in remission or still battling this horrendous condition. Many of these people marched for much of the 18 hours of this event which was very inspiring.

We walked through the night and I was pleased to survive sans blisters and managed just over a marathon

Walking through the night

Walking through the night

distance, which was a real achievement for me considering I hadn’t trained. One monster in our team was in training for a super marathon in 3 weeks time. I’m not sure exactly how far he ran, but it was in excess of 140km which was amazing.

Blues in the night

Blues in the night

During the night there were various activities including games, bands, the lighting of the HOPE lights, food stalls

HOPE

HOPE

including bacon butties (something my stomach couldn’t handle the thought of at 3 in the morning, despite the pervasive aroma which I would normally relish) but I did see a number of Police enjoying them after a brief team run in full kit, very brief I might say, but it was great to see them there. It would be really cool to see an official team from them next year:)

Candle Tribute Bags

Candle Tribute Bags

People created candle bags (LED Candles for safety) and left messages for loved ones which twinkled during the night, adding to the spectacle. Reminding people why we were there.

I made an interesting discovery at about 4 in the morning which was that it was pretty much just as painful getting back up and moving after sitting down for a while as it was being back on the track, so back I went.

Looking out from our tent site

Looking out from our tent site

Ultimately this was an awesome event, which despite having said after walking through the mud in Kumeu last year, that I wouldn’t do it again, I will most likely do it again next year, although I might train for it next time. After all I can’t be satisfied with only 44km in 2014:)

Don't judge me

Don’t judge me

In closing many thanks to my personal sponsors, to all sponsors, huge thanks to the many volunteers and kudos to the cancer survivors. Cancer doesn’t respect age, gender, ethnicity or anything else and I doubt there is anyone who hasn’t been touched by it themselves or through a friend, family member or colleague.

One footnote. I’m seeing ads on TV for cycling for cancer and other events, which appear to be commercially funded. I didn’t see any news media at this event at all, despite the number of people all giving their time for free other than a TV crew who appeared to be recording a documentary. Where was the NZ Herald? Where were the radio stations? Where was TV One and TV 3? Where was the North Shore Times?

3D Bioprinting


3D Printing is no longer news although I suspect most people haven’t heard of it yet. In fact there is a company within a couple of km of my office in Albany already successfully offering a variety of 3D printing services, incidentally called 3D Print. Another Aucklander, well known internationally in the  3D printing with RepRap is Vik Oliver, seen here with one of his machines.

When I heard that Richie McCaw was injured and after surgery was going to miss around 6 matches after having a titanium screw in his foot, my first reaction was, as most Kiwis, just what we need in Rugby World Cup year as he is such an amazing skipper and we want him there leading the All Blacks. Then I thought about so many other sports people who suffer injuries all the time given that they are putting their bodies on the line professionally.

Imagine a technology that rebuilds or repairs body tissue, bones, ligaments, even organs in vivo, using micro surgery techniques that mean people recover far more quickly, naturally and potentially therefore stronger than before.

Using the same types of technologies as conventional 3D printing, it will soon be possible to pattern and assemble, layer by layer, functioning living tissue, as well as non living substitutes such as ceramic and titanium according to Vladimir Mironov, an associate professor and director of the Advanced Tissue Biofabrication Center at the Department of Regenerative Medicine and Cell Biology, Medical University of South Carolina. He is also currently making waves about growing in vitro meat, something I have previously blogged about.

So this is a relatively new technology and I don’t know that it has been tested on humans yet, but the technology is already commercially available from companies such as envisionTEC.

Imagine the good this technology could do for people with problems from injuries, burns, through to the huge numbers of people who die for lack of organs for transplant.

The following video shows how bioprinters will be used in the long term. The technology will also be used to create human tissues which can be used for drug testing instead of using animals.

Of course if tissues and organs are made using material from the host, we can eliminate problems such as donor organ rejection.

Why don’t Auckland Hospitals Work Smarter Instead of Harder


A friend of mine was prepped for 2 days with nil by mouth a month or 2 ago for urgent cancer surgery. The first day she got bumped and the 2nd day was the start of a radiographers strike. Last night she was prepped for an 8 hour operation and got bumped due to a critical case that suddenly appeared. We thought she was criticial, but obviously that’s not for us to judge.

I’ve asked the question before “Is hospital the best place to be when you are sick?” and pretty  much decided unless it was a private hospital, possibly not. But of course most of us don’t have any choice especially as we get older.

It is nice to see that some things are improving. For example Auckland Health Board has decided to send some patients to private clinics for radiation treatment to reduce waiting times.

I had blogged previously about waiting times at North Shore Hospital based on experiences waiting with family members in A & E and subsequently in corridors in some cases for days, without being assigned to wards. Each time we were told that it was an exceptional case and we were just unlucky. A registrar was sick and therefore his team couldn’t operate was a common excuse. Think about it, an entire team doesn’t operate because one person doesn’t turn up? Maybe they were stretching the truth, being they are short staffed and can’t afford another registrar, and they didn’t turn up because they didn’t exist.

According to the reports, North Shore Hospital is improving and it is now only the 3rd worst in New Zealand. North Shore Hospital supports North Shore and Waitakere with an excess of 400,000 population and rapidly growing. Of course things will change with the new Super City, but the problems won’t go away.

As you can see in previous blogs I’ve written such as ‘76 Deaths, Surgical Mistakes in New Zealand Hospitals‘ I have been pushing for more specialized technology to streamline processes for many years. The technology has been around for a long time, yet we still seem to rely heavily on paper. Tablet and handheld computing has been around for a long time. Most of us use WiFi in the home, in cafe’s, at the airport and understand the power of dealing with information once, accurately and allowing instant access to anyone who needs it in a timely fashion. That’s how we live.

I now see bar codes on patient wrist bands, but I don’t see them being read by a handheld computer to check for allergies, conditions etc at the bedside. This technology could have saved many NZ lives at a tiny fraction of the cost of their lost lives, productivity etc.

When I started promoting this technology, it was with Pocket PC, Palm and Symbol technologies (handheld computers, 3D Bar Code Readers, Portable Printers, Digital Cameras which were being used in many US and European hospitals and that was 20 years ago!

Today there is superior technology such as the Panasonic Mobile Clinical Assistant CF-H1 which runs on Windows 7. The video is pretty corny but it really does illustrate how efficient it is to use mobile technology. Of course this technology has a rugged drop spec, is chemical resistant, lasts 6 hours on a standard battery.

This technology means everyone is in sync and has access to critical data on demand. Paper gets misplaced in hospitals. I had one visit with a daughter that was delayed by 90 minutes simply because someone had misplaced her file. Data can be shared with specialists and medical staff in and out of hospital, including images such as scans, x-rays, photos, test results, charts and graphs. Allergies and condition interactions can be monitored to minimise risk of causing new problems, doses can be confirmed, approvals provided remotely. Pretty much the whole world’s medical knowledge is available online today.

Today’s world should be about harnessing technology to work smarter rather than harder. I suspect the focus is on cost of the technology because our hospitals are run by administrators tasked with saving money. Of course they are largely man aged by politicians. If health is a major election platform every election, why is it that the performance is still so poor?

Next time you are in hospital, have a look at how they use or don’t use technology. Think about how you operate in your business. Think about what’s at stake and ask them why they do things the way they do.

We have national elections next year. They will be talking about improving the health system. Will they be talking about improving the ICT structure and putting information in the hands of the clinicians? Or will they be talking about saving money, improving the monitoring of staff performance and measuring waiting times in A&E?

We have an ageing population and growing population. They are going to need more services and we could increase our throughput, reduce patient risk, significantly improve outcomes by harnessing technology, working smarter rather than harder, expecting great results from staff working double shifts several times a week.