How I Chose My Prostate Cancer Treatment AND Got to Remission


I have had feedback from many people that they are reading my blogs about my cancer journey and appreciation for my speaking out, when for many men this is a taboo subject. I really appreciate the feedback. It’s not exactly a comfortable thing to share. There are a couple of things I would appreciate even more. If you think these blogs are useful, please leave a comment or share it with others and if you can find it in your heart to do so, please visit my Relay For Life page. It’s a month away and I am desperately hoping the weather isn’t like it is today!

IMG_3494The biggest win for me has been that I am now up to 20 people who have been motivated by me to get tested for cancer, which is awesome. Prostate cancer does kill people. On Wednesday night I was standing by the window in a stinking hot room at the West Plaza Hotel in Wellington with no air conditioning, looking out at the night sky and hoping it would cool down and watching the Halberg Awards live on TV. From West Plaza

In the memorial section, there was the face of Steve Sumner how died only a year ago from Prostate Cancer, I thought of a radio personality (I haven’t asked her permission so won’t use her name) who told me her father died from Prostate Cancer because he didn’t get checked until it was too late; and I thought of Paul Holmes who on one TV interview said that he wished he had never known he had cancer, but reading this story, I suspect he changed his mind as he realised how important life and his family were to him.

Anyway, I met with my urologist and my oncologist to discuss my cancer treatment options. They gave me an information pack from the Auckland Cancer Society and whilst being very diligent in trying not to let their biases show, explained a little about the options available to me. I have had a little experience with specialists who are very focused on the particular treatments or therapies they offer, and they should, because they shouldn’t be performing them if they don’t believe in them. But one size doesn’t fit all.

I was given four medical options. I did also try alternatives like Pomi-T for a long time and sea cucumber which tasted horrendous and cost a fortune. They didn’t hurt me, but the tumors kept growing.

  1. External Beam Radiation. 8 weeks of radiation, which according to my oncologist has a 95% success rate for people at my level of cancer.
  2. Brachytherapy. This is where they insert radioactive isotopes into the prostate and treat it from the inside out.
  3. Hormone therapy. This is similar to the treatment they use on sex offenders to reduce their sexual urges, reducing testosterone and increasing female hormones. Testosterone feeds tumors, so less testosterone means less for the cancer to thrive on.
  4. Radical Prostatectomy or surgical removal of the prostate gland. As it sounds.

I listened to their arguments for and against. I read the pamphlets. I joined a prostate cancer forum and asked other people who had prostate cancer about their treatments and found that they had all done a lot of research; and uniformly recommended the book Winning the Battle Against Prostate Cancer by Dr Gerald Chodak, which I mentioned and linked to in this blog.

I also went to a prostate cancer support group which was the most depressing thing I’ve ever been to. I appreciate the intent, but what an experience. One man had been told that day that he had less than 6 months to live and he was telling me how he was bewildered and horrified, struggling to comprehend a life of daily exercise, good diet and basically doing everything right and instead of looking forward to retirement in 5 or so years, he wasn’t going to be around for it; and a guy so depleted of testosterone that he had suffered massive weight gain, hot flushes, emotional swings, inability to reach an erection (and the lack of desire to do so with the depression of not having it) and more. I understand the purpose of the group and applaud the Society for providing this service, but it wasn’t for me. It could have just been that I picked the wrong day to attend.

With regard to treatment and side effects I want to reiterate that everyone is different. If you look at the side effects for any drug you take on the packaging or leaflet, most people don’t experience many of the potential effects, but the odd person could have severe reactions. I’m not trying to influence your decision. You need to make it for yourself and decide even how informed you want to be.

External Beam Radiation

As a poker player, 95% odds of success appealed to me. Imagine going into an 8-week poker tournament knowing you had a 95% likelihood of being in the money at the end if you followed instructions!

The center offering the treatment said they were prepared to provide my treatment at 7AM each morning, so I could go to work afterwards and have minimal disruption to my life.

The side effects to consider were:

  • Hair loss in the area (not a worry)
  • Mild fatigue (about that…)
  • Frequent urination, weak stream and burning pain while urinating.
  • Possible diarrhea, incontinence, impotence and proctitis.
  • Reduced or no seminal fluid with ejaculation

Many of these side effects disappear a year or so after the treatment. Everyone is different.

Brachytherapy

Many of the symptoms are similar to external beam radiation, but instead of 2 months of radiation, it’s a brief surgery where radioactive seeds are implanted and that’s it. A key difference is that the side effects occur fairly soon after the implants have been placed and improve, where the symptoms of external beam occur later. Side effects include:

  • Burning pain during urination
  • Difficulty passing urine
  • Rectal bleeding
  • Sexual Dysfucntion
  • Urinary Incontinence
  • Bowel Incontinence
  • Diarrhea
  • Having to stay away from pregnant women (what if they don’t know they are pregnant?) and adolescent children.

Hormone Therapy

In the book I mentioned above, Dr Chodak explained that the treatment is more or less the same as what is known as chemical castration, the treatment that is used to stop sex offenders, because one of the primary side effects is that it reduces your libido or sex drive. Great if that means reducing the risk of a criminal reoffending, but not for a normal male, or in fact a normal couple.

  • Loss of interest in sex (libido)
  • Erectile dysfunction
  • Hot flashes
  • Loss of bone density and risk of fractures
  • Loss of muscle mass
  • Weight gain

Radical Prostatectomy

This is surgical removal of the prostate gland. The things that worried me the most were the risk of nerve damage and the potential to never be able to have an erection again as well as a reduction in penis size. Sorry of this is something that you find creepy to read, but it’s amongst the things I had to consider. If I was 70, these things might not be such a big deal, but I’m not and they are. In the USA this surgery is frequently done by a robot, but here it is humans and I don’t care how good the surgeon is, stuff happens, there is a high risk of at least partial nerve damage.

Ignoring infections and other things that can go wrong and potential risk of tumors crossing the enclosure holding the prostate gland in place (also a risk with biopsies and the Brachytherapy), side effects include:

  • Urinary incontinence and/or urine leakage which can mean having to wear pads for 1-3 years or longer
  • Trouble getting or maintaining an erection, potentially permanent
  • Dry orgasms and loss of sensation and pleasure (and the impact of that on your partner)
  • Infertility
  • Penile shortening
  • Bowel Injury

But Wait There’s More

So this is just scratching the surface. I read the book and it literally gave me nightmares. It wasn’t a short book and went into way more detail than what I have shared above. It was very thorough in explaining all of the details of the different surgeries and what factors you should consider based on the severity of the cancer, your age, your lifestyle. It helped me make my decision from a personal and clinical perspective, but I’m not sure I would recommend it. I was pretty upset and stressed out for a long time after reading the book. I can’t even bring myself to go back to it to quote parts of it to you.

My decision

I want to reiterate again that my decision was based on my feelings about the treatments, the people offering the treatments and my personal circumstances, my relationship (of course my wife was also part of the decision making process because it affected both of us), my age (I plan to be working for at least another 10 years), my family and obviously wanting to survive and live a productive and happy life.

I chose external beam radiation for various reasons.

  • A 95% success rate is not to be sneezed at (unless you become semi-incontinent!). It’s no laughing matter either as people who have semi-incontinence can attest to.
  • My granddaughter was 7 and I didn’t want to lost that special relationship of being able to sit next to her, have her on my knee or miss out on hugs. I was worried that if for her safety, I had to keep my distance that this  might have a long term impact on our relationship. You can’t get that back and she was too young to have been able to understand if I noticeably kept my distance.
  • While it would impact on my ability to travel by plane for work, which I was doing 2-3 times a month, I could do some of the treatment over Christmas.
  • Doing the treatment at 7 each morning meant that I wouldn’t have to take time off work.
  • IMG_4479I wouldn’t have to risk sitting next to someone on a plane with radioactive seeds between my legs. Imagine saying to the airline, I’m flying on Friday. Please don’t seat me next to a child or a pregnant woman. What if the woman doesn’t know she’s pregnant? Okay please don’t seat me next to ANY woman. I wonder how many people do and if any women struggle with fertility as a consequence of having randomly sat next to someone on a plane or at a concert. I wasn’t going to have that risk on my conscience.
  • The side effects seemed to be the least severe of the 4 options.

“I’m sorry, but you’re not in the 95%”

IMG_2105Unfortunately after 2 months of radiation treatment, when I had a series of scans to see how it went, the treatment was unsuccessful. I was in the 5% of people for whom it didn’t work.

I got many of the side effects, some very severe, but the cancer was still there. I may write about the year during and after the treatment for anyone that wants more insight into what it was like. From drinking a bottle of water every morning on the way to Mercy Hospital so that my full bladder would push my internal organs out of the way during the radiation treatment, being afraid that I couldn’t hold it, the painful urination, the loss of libido and erectile dysfunction, a feeling of loss of dignity, chronic fatigue, depression, needing to stay close to a toilet and on the other side, meeting some wonderful people, both fellow patients and those who helped me with treatment of my body and mind.

Another Choice

So then I had 3 more options. Brachytherapy wasn’t much of a choice given the radiation had already failed, so I had to go to hormone treatment, given I do not want the surgery.

This treatment was just pills, nothing more. I had side effects and continue to have some lingering effects. I had to make use of the counselling from a psychologist at the Cancer Society.

IMG_2290The end result was about 7 months ago my Oncologist said “You are in remission”. I had to ask what that means, because sometimes people talk about being cancer free. There is no such thing, but you can be in remission for years or decades.

This is important because I frequently read or hear stories about people being cured of cancer. As I understand it, there is no such thing. We all have cancer cells, they may be dormant or managed, either with treatment, diet or our immune system, but you do not get cured.

I am now on 3 monthly visits and in January had my 3rd one where my oncologist said my testosterone levels are good, my cortisol levels are lower than we would like, but I am producing some, I am still barely producing adrenaline, but my PSA levels are low and stable. I don’t have to go back for another 2 months.

Early Birds 2018

Our 2018 singlets have just arrived. The 18 for 2018 is made up of the names of people living and sadly past who we are walking or running for on 10-11 March. The day after my birthday.

I’m in remission. I am focused on Relay For Life. Check out our Team Early Birds singlet. The 18 for 2018 is made up of the names of the people we are walking for over 18 hours. We are raising funds for the Cancer Society who do amazing work. They don’t take any money out of it for admin or running the society. It goes to research and supporting services like the psychologist who helped me and accomodation for people who have to travel a long way from home for their treatment. I’m on a mission to get people like you to donate $5 to this wonderful cause. Think of it as a koha for the time I spent writing this blog.

For those who are facing decisions like mine. I’m happy to answer questions and I will probably share more details of what it was like physically and emotionally to go on this journey.

CLGR7749In the meantime, I’m working on recording my EP of 4 songs called The Cancer Diaries. I am struggling with the rhythm guitar for the second demo, called Who Stole My Words and may need to call on one of the guitarists who offered to help me with this album to lay down a track for me. I hate asking for help but I need some with this.

I hope this has been informative and not an uncomfortable read. It is an uncomfortable condition as is any cancer and I hope that this blog is helpful. I hope that I can increase the number of people who get tested early beyond 20. I hope you will leave a comment, question, share, or make a little donation to Relay For Life.

 

 

 

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Prostate Cancer. No Pressure. Need Help for Relay For Life 2018.


So when my GP told me that my PSA levels had increased every test over the last couple of years when they should fluctuate, he said there was a risk that I might have cancer. He told me to lie up on the bed in his surgery, pull my pants down and my legs up and before I had a chance to ask, “is this necessary?”, his gloved finger went where the sun don’t shine. To say that it was unpleasant was an understatement, but I barely had time to feel embarrassed.

We wasted no time in making an appointment with a urologist and off I reluctantly went. I’m not sure what I was dreading most, being told I had cancer (If I did) or having yet more insult and injury to my dignity.

IMG_0817

A sign on the track at Relay For Life

He was a very nice, gentleman who explained to me what was going to next and asked if I had any questions. I was feeling pretty much in shock and bewildered and was barely taking in what he said.

He asked me what my flow pressure was like when I peed. I thought it was OK most of the time. They told me on the phone that I had to arrive with a full bladder for a urine pressure test, so I was ready to relieve the pressure.

I had to pee in a basin that had a sensor in it and I thought I did pretty well, as he stood in the next room, watching the gauge. He then burst my bubble and said that my flow was well below average and asked, would I like a script for something that would make it flow faster.

I declined. Up on the bed and he started prodding my stomach and then asked me to pull my pants off, lie on my side with my knees hard up against my chest.

20160320_095520Now dear reader, you may be feeling squeamish, you might be feeling embarrassed, you might be thinking, I’m pulling out of this story.

You might be thinking, why is he telling me this? Is it necessary?

No it isn’t, but I want your help and if I get some donations for our next Relay for Life, I won’t share the next step with you and I won’t tell you graphically how I felt.

People ask why I share my story. I’ll tell you why. All around me people are either battling or losing the fight to cancer. One in 3 people in New Zealand will get cancer and we have to do something about it. We can do something about it. The numbers are pretty similar in the western world.

Early Birds 2018Relay For Life isn’t just for raising money for cancer research, it is about remembering the people we love, work with, our friends and family who are affected by cancer. It is as much a celebration of life as a sharing of loss.

We walk for 18 hours in relay, and the number 18 on our singlets if you zoom in, you will see it is made up of the names the 13 of us are walking for. Some have passed away in the last few months, some are battling, some have been gone for some time and some are in remission like me.

When you walk around the track and you see an 11 year old in front of you and on the back of his shirt it says ‘I miss you Mummy’, you know why you are there.

So to stop me sharing the rest of this visit to the urologist, how about going to the Relay For Life website here and making a small donation. $5 is tax deductible if you are in New Zealand and it would mean a lot to me to have your support. If you’re overseas, maybe you won’t get a tax rebate for it, but I’d still be very grateful if you could share the cost of a coffee.

IMG_2082

These are the bags we put our clothes in, when we go in for radiation treatment. Each one of these bags represents a person being treated for cancer at any given time, just in this clinic

I hate asking for money, but it isn’t for me. It may will help you or someone you care about. Remember that number. 1 person in 3 in New Zealand will get cancer at some stage in their lives. Draw up a little list of people in your family and then separate one third of the names on that list. Imagine if those people got cancer. This is personal folks.

This year Relay is on the 10th and 11th of March. We got through the night to symbolise the cancer journey. You don’t have to walk the whole time, it’s a relay, but many of us like to do as much as we feel able. Our team is quite small this year. So far only 13 people. If you feel you would like to join us please head to the Team Early Birds page and let me or one of the team know.

Will you join us in person or in your thoughts?

I’m in Remission, New Song for Cancer Album and Relay For Life


What a week I had last week, back to work blues, PSA blood tests for my prostate cancer and the usual agonising wait for yesterday’s meeting with my oncologist after my blood tests on Wednesday and more.

Benji RoomSo the visit was short and sweet, my PSA levels have gone down a little, without the help of any more drugs and after prodding my stomach (not quite sure why and I didn’t ask) I don’t have to go back for another 3 months.

That’s a weight off my mind and I can refocus on getting on with life and I have so much I want to do.

First, there’s Relay For Life on 10-11 March. Team Early Birds is back for another year and I need your help. Our team is a little smaller than in previous years and if you would like to join us, we would love your company. You can get all the detail here.

iPhone 145If you can’t join us, it would be great if you could leave a little donation. Even $5 is tax deductible and it is an awesome cause. With one in three Kiwis getting cancer, anything we can do to aid research and the awesome work of the Auckland Cancer Society who have been a huge help to me, is welcome. Last year I raised $1,500. So far this year I haven’t got to $50. So either way, can you lend a hand?

My Big Project A Cancer Video EP, the Last Song

EarlyAs you may recall, dear reader, I am working on a HAG project which is huge, creating an EP and video series for people with cancer and those who are supporting friends and family with cancer in some way to help them on their journey. If you missed that story, details are here and again I need help.

The last song is called Dare to Dream and after the good news again on Saturday, it seems the right time to share the story and lyrics with you. This song is intimidating to me because it has tracks that I can’t play including a sax and a gospel choir. I have no idea where to find either of these, but I am confident that with some help from my friends, I will.

The song is about being told I’m in remission and trying to process what that means. I used to think that being in remission means that you are cancer free, but when I asked Benji, my oncologist about that he said “You will never be cancer free. Once you have cancer, you have cancer. Remission means it is in control and you don’t need any treatment, for now.”

IMG_2153So for the foreseeable future I will be stressed out on the last week of each 3 month period and hopefully like yesterday, will be told the good news that I continue to be doing fine. Benji thought I was looking very well and looking back at photos of my pasty pale face of a couple of years ago when I was undergoing radiation treatment and dealing with chronic fatigue, I look great!

So if you’re still with me, here are the song lyrics. Super Better is an awesome book by Jane McGonigal which now has a game and a Facebook page. There is also a great TED Talk by her for those who don’t want to wade through the book.

Verse 1
I’m in remission, it’s a reprieve from my condition

In 3 months I’ll know more, for sure

Pinch me am I dreaming? Please explain the meaning

Before I close the door, does this mean I’m cancer free?
Chorus 1

The winter sun is crisp and clear,

I’ll write a list for 10 more years

Of things I want to do and see,

Things that mean the world and

Dare to dream, dare to dream

So much more for you and me

So much more that we can be

Verse 2
I’m in remission and I give myself permission

To embrace each new day as if the cancer has gone away

I’m going to grab a power up a SuperBetter lift up

Cause there are many on our team

Who need to dear to dream.
Chorus 2 (gospel choir for alternate lines)

Dear to dream

Watch me lift my hands up high

Dear to dream

Reaching out to touch the sky

Dare to dream

Take off like a bird and fly

Can’t believe this feeling

Repeats after break with lead guitar and horn section

songSo there you have it. I’m currently working on the demo for my second song called Who Stole My Words, which is about an incident where the chronic fatigue brain fog meant I couldn’t come up with simple words like current and channel to explain how I found myself upside down in an ocean kayak, without any fight or flight instinct because I wasn’t producing cortisol or adrenaline. I was upside down, underwater harnessed in thinking ‘this is interesting’. Anyway, I’m having a bit of a struggle going from fingerpicking to strumming and staying in perfect time with the clicktrack so I can add a walking bassline. But that’s another story.

So, can you help with Relay For Life, either with a small donation, or joining the team for 10-11 March in Mairangi Bay at the Millenium Institute? I’ll be there all night relaying with family and friends to raise money for the Cancer Society and in honor of the friends, family and colleagues who are fighting or who have lost their battle with cancer.

Do you know an Auckland based Gospel choir or a small horn section, or at least a sax player who could help with this song? The album will be Not For Profit by the way. I know I will have to pay for some of the work, which I will crowd source, but the end product will be free.

Mercy ScannerWant more info on my cancer journey? You’ll find it here. If you know anyone else who might find this interesting, please share it with them with my thanks.

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.

 

Who Is Buying Your Personal Information and the Internet of Things?


Who owns your personal information? Who gives companies the right to collect data about you, your family, your friends, your activities, where you live, what you eat, drink, your health, how you travel? Somewhere along the line you probably did, because you didn’t read, or understand the fine print when you signed up for an application, an email newsletter, a loyalty card, or you aren’t worried about your privacy.

There has been much talk about the NSA, and big data monitoring systems in most countries around the world designed to protect us all from terrorism. There has been a lot of talk about how privacy is being eroded with social media. Many of us have the philosophy that if we don’t do anything wrong, we have nothing to hide. But who else is collecting, buying and selling personal information about you?

FuturistA recent story in The Futurist called ‘Connecting with our Connected World captured my attention, particularly when it outlined, from a Wall Street Journal article,  apparently fairly common knowledge, that many retail stores track personal shopping habits using loyalty cards and then resell the data to marketers. The Wall Street Journal article ‘confirmed’ that this same data is now being purchased by insurance companies for the purpose of setting premiums and investigating claims.

With the Internet of Things (IoT), we are now being encouraged to buy fridges with built in bar code readers and wireless connectivity, so that we can scan items we use and feed them to our shopping list. Many of us now have grocery applications, such as the Countdown app, which I have blogged about before in my SoLoMo Consulting blog.These apps monitor what you buy, suggest specials, recipes and even navigate you up and down the aisles of your nearest supermarket so you don’t have to backtrack for things you forgot.

As Richard Yonck of Intelligent Future LLC in Seattle points out in The Futurist, “the rate at which a household consumes sugar, salt, tobacco and alcohol would potentially be an open book.” What could your health insurer infer from that?

It names them

It names them

Combine the information from your mobile apps that know your location, where you have given permission (which is probably half of the apps you use today), your climate control, light controls (that suggest you might be home, or not), fitness apps, social media (freely searchable with tools like Facebook Graph like the example which names people who like Edam cheese,) the direction Google and Apple are heading, to be able to predict what services you may want next based on your context, profile, time and location, your life is an open book today.

The problem with all this big data that we are ‘willingly’ sharing, is that we really don’t know what we are agreeing to or what the data is being used for. I don’t believe we have adequate laws nationally or internationally to protect us from abuse of this data by any agency, business, government department, insurance company, utility company, finance company, the list is infinite.

According to a story in The Public Herald it’s pretty much a free for all. For example they say:

  • Experion sells data updated weekly on new parents, new homeowners and other new event life triggers.
  • Have a read of what information Epsilon sells in this PDF. Who reads Science Fiction novels? Ever wondered why your phone keeps ringing with charities asking for donations? They buy lists.
  • Back to the Public Herald which says that Disney sells data including who bought what, the age and gender of the children, age and occupation of the people who purchased from them and more.

These are just scratching the surface. It isn’t necessarily all bad, the problem is that there doesn’t appear to be any authority tracking who shares what information with whom. The issues come down to informed consent. When you sign a form, enter a competition online with an attractive prize and you click, ‘yes, you can share my information with partners who may have items of interest to me’ perhaps because you think you might have a higher chance of winning the prize, you are losing control of your data.

There are laws designed to protect us from spam, but we often sign away rights without understanding the implications. Companies selling our data will argue that they have our approval to use and share our information. The flow of data will become so convoluted that it will become impossible to know who has what. Big Data companies will consolidate this data also with our ‘implied’ approval.

Governments need to be thinking about this now, if it is not already too late. Of course they arguably need the data as well in order to provide quality health, education and other services, including planning future smart cities. They need as much data as possible, although they don’t in many cases need the granular level down to individual people.

So as a footnote, think about all the cool Internet of Things you are buying over the next couple of years, like exercise devices, remote controlled security cameras and home access, climate control, sleep and snoring monitors, lighting, car telematics, electronic ticketing for public transport and much more, weigh up the cool with potential risk and consider that if legitimate organizations can access your data, so potentially can people wanting to commit crimes. It is already known that burglars steal product to order based on what they find on social media apps like Facebook (had a great weekend on the jet ski and now I’m off to Fiji for a couple of weeks and I’m putting the dogs in a kennel).

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?

The Problem With Consultants


What is the problem with consultants?

Consultancy is one of the fastest growing sector in professional business people, the USA alone has over 700,000 of them. IBM Global Business Services and Ernst & Young have almost half a million consultants between them alone!

They charge a lot of money for their expertise and knowledge, if you get one through one of the top firms like McKinsey and Boston Group are unlikely to give you any change out of thousands of dollars an hour. Of course what you are buying in many cases at that level is something you already know, its more a corroboration perhaps when you are making a decision that has significant implications for your business, especially if you are looking at taking it into green fields, although most large businesses don’t take those sorts of risks in the first place even if the potential gains are huge.

Given that IBM possibly has the largest group of assembled business consultants of any company in the world, I guess the adage that no one ever got fired for buying IBM (not strictly true) still carries a cloak of implied job security for decision makers.

Perhaps it is the fees that put people off consultants especially when compared with the salary packages of the people who are hiring them, often to tell them things they already know, or for mining information from employees of their own company. Of course consultants don’t have job security between consults and often can’t even talk about what they did for their clients to earn those dollars because the IP is commercially sensitive. Do you get better value from a consultant who works for a top 1o company, or one who is self employed? Maybe, sometimes. Often not.

As a consultant myself, I think a common problem that people have is that the information they provide is known within the company, but for various reasons it wasn’t available to key decision makers, or they didn’t want to hear it from staff who sit below them on the corporate ladder. It is also frustrating for companies when it appears that the solutions or recommendations that consultants make seem to come so easy for them. It also frustrates many companies that they aren’t able to get those answers from interns and graduates they employ who they expect to have the latest thinking on their industry.

The problem for the graduate and the difference between them and the business consultant, is that the good consultant has business experience. They may have specialist knowledge in an industry, be that biochemical nano technology, banking or retail They have years of experience understanding and finding solutions for problems.

A key thing that I bring as a consultant, is that I don’t have emotional baggage in your business, I am not phased by who is the boss, I am not married to the corporate Business As Usual credo of ‘this is how we roll’. I can see things that might be staring in your face and you don’t see them, because we are wired differently. I’ll tell it to you how it is.

I am also passionate about solving business problems. I get out of bed excited about the opportunity to understand your business and help you to find solutions to your problems, how to grow your business, how to find out what your customers really want and need, how to harness the knowledge your people (your most valuable asset) have and want to share with you. I can save and make you money. Sometimes I can do that very quickly with knowledge I already have after many years of working in a variety of roles including my own companies, sometimes it may take weeks or months. I can take knowledge from a wide range of industries and transpose them into relevant solutions for yours.

The problem with consultants is that people bring them in too late. Why wait for an ambulance at the bottom of the cliff? Why not talk to specialists on your way up who can help accelerate your progress and help prevent costly detours or mistakes?

The problem with consultants is sometimes they will tell you what you don’t want to hear.