This is Intimidating! I Need Help! A Cancer Journey EP/Video to Help Others Sounded Easy.


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The entrance to the radiation therapy room at Mercy Hospital, the start of my days for 8 weeks

Do you know anyone with cancer, depression or other debilitating conditions? Do you suffer yourself? Perhaps, like me you have a health condition yourself; and like me want to create something positive out of it, including coping strategies and fighting to find yourself back.

Would you like to be part of something that resonates with your values and help support me on this HAG (Hairy Audacious Goal)?

Yesterday I posted about Item #2 of 150 on my Life List inspired by Danny Dover author of the Minimalist Mindset, other books I have read like The Happiness Trap, podcasts like The Hidden Why by Leigh Martinuzzi, people I saw on TV programs like The Voice who had been on much tougher journeys than me and dared to dream of achieving lofty goals during the time I have been on my prostate cancer journey.

With the help of some good friends and family, some also still suffering from cancer I dragged myself out of feeling sorry for myself and decided that number #2 on my 150 long Life List of values based activities would be to created an EP and Video set of songs that were part of my catharsys and development, such that it will resonate with and help other cancer sufferers and their friends, family and support network.

I’m wondering if I have created a monster. How will I achieve this and 149 other things to boot, let alone find the energy for it, without detracting from my day job, which I can’t financially do without (and am passionate about)? How will I achieve this when I still frequently have to be woken up in the evening after my day at the office?

The answer, which is the same one as my cancer journey is that I can’t do it alone. In order to help other people, I need help from a team of people with a rich source of experience and some that can help with less specialist areas of support. Everything from project planners, musicians, vocalists, videographers to sound engineers, artists, production, social media, marketing and crowdfunding. Are you one of those?

I also just need supporters who can help spread the word, connect with members of the team, make cups of tea (or Texas Honey), run around after us and keep us on track and provide emotional support. We’ll need studio’s, technology, sound gear, meeting space, This is a pay it back or pay it forward exercise and should be a lot of fun.

Just since yesterday, I have already had firm offers of help from people, which is awesome and I will take them up on it. I’m going to need a pretty big team with a wide range of skills and it’s a labour of love, a not for profit venture.

Check out this short video with Danny Dover and see if it resonates with you. Is your life meaningful? For some of us it takes a reminder of our mortality and human condition to force change. Then you have to do something about it. You might like to take a similar journey and if you do, some elements may overlap. I’d love it to be this one.

So, this morning I started documenting what I am going to have to do in order to achieve this goal and it is huge. It could almost be a full time job in itself, which  is intimidating, but if I can find plenty of experts in different fields who will support me and donate time and energy; and find funds for the parts that I have to pay for, I’m going to make this happen. I’ve done it before with The Wireless Forum, Glenfield Music Centre, parents committees, sport club committees, Auckland ICT, SMEI International and more, all while keeping down a job. Anyway:

This is what I came up with for starters and it’s by no means complete:

Plan for Cancer Music EP / Video Project

  1. Concept Document and elevator pitch
  2. What help do I need at each phase of the project
    1. How can I even do it while keeping my job and energy?
    2. Project Manager
  3. People or organisations that can help me
    1. People who have raised their hands
    2. Influencers
    3. People I would like to approach for help
    4. Mentors
  4. Finance
    1. How much do I need?
    2. Where do I get it from?
  5. The songs
    1. Finish them
    2. Practice them
    3. Write a story about each one
  6. What do I need for each song
    1. Record basic demos
    2. Identify the sounds I want for each song
    3. What instruments / vocals do I want for them
    4. Find artists
    5. Find a producer
    6. Find a studio
      1. Engineer
      2. Mastering
    7. Record in conjunction with videos
    8. Video the entire process, not just the songs
  7. The video/s
    1. What is the story for the whole production
    2. What is the story for each song
    3. Find a videographer
    4. Write each song story
    5. Find an editor
    6. Production team
  8. Presentation
  9. Publishing
  10. Marketing
    1. Facebook Page
    2. Promo/merchandise
    3. Raising awareness
  11. Launch event and concert gifting the outcome to the Cancer Society
    1. How would they use or benefit from it?
    2. How will it reach patients and their supporters?
    3. How will it endure

Want to be on the team?

Life List #2 Record an EP and Video of my Songs about my Cancer Journey


I know you are a caring person wanting to make a difference like me, or you wouldn’t be reading this blog. I’m looking for advice and assistance on this project and I want to gift the results to the Cancer Society so that many people can benefit from it.

Music is a great healer and I used it as one of the tools that helped me and continues to help me through my journey. When I first was told “You Have Cancer” and got past the initial shock, I watched shows like The Voice and saw the stories of people who had turned horrific times in their lives to good purpose, wondering what did it take for me to do something positive and values driven.

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Where we leave our clothes when we go in for radiation treatment

I decided I wanted to do something too, which started with setting up the Facebook page Musicians with Cancer and other Maladies, I also wanted to try to do something really positive for other cancer patients and their families and friends.

 

So my Life List goal #2 is to complete an EP and music videos to help tell the story of my journey in terms of a cancer patient that may help other people relate to this horrible illness.

It’s 24/7, it’s scary and in many cases results in anguish, fear, depression, pain and death. The story isn’t unique, it applies to other conditions too like dementia.

Last night I watched the movie ‘Glen Campbell I’ll Be Me’ on TV and had tears in my eyes throughout the whole movie and my heart goes out to people suffering from dementia, which our family is also dealing with.

One of my songs for the EP is called “Who Stole My Words” which was about an experience I wrote about recently about falling out of an ocean kayak and due to my condition wasn’t able to come up with simple words like current and tide after I swam it to shore, not having the strength to get back in because I am not producing cortisol (i.e. no adrenalin). For a wordsmith, not being able to recall simple words is pretty scary.

So my challenge is that I need to fund this work and then make it available at no cost to people who are going through the same experience, because even with insurance, having cancer is very expensive and many people have to sell their homes or spend their life saving to help pay for their treatment or even to travel for treatment if they don’t live in a town where it is available. We had to spend a 5 figure sum to top up the gap for my treatment to date, so I know what it’s like. So I’d like to gift the album / video to the Cancer Society when it is complete.

I’m going to need additional musicians, possibly a backing choir for one of the songs, a videographer, editor and more people to help me. I’m going to need a studio, a sound engineer, a cast of several people and then there’s production and distribution. It’s pretty scary.

I’m keen for advice and help. First of all, where do I go for money? I’m thinking about whether to use New Zealand’s ‘Give a Little’ service. To raise funds because this is a charitable exercise. The finished product will be gifted to the Cancer Society and anyone who can benefit from it for free. There won’t be any profits.

Then I need a bit of a team to help me make this happen. Can you help with advice, or would you like to join the team? I can write the songs and I want to perform them with various artists, but that’s about the limit of my expertise.

So will you help? I need people and I need advice. You can contact me via Twitter Facebook by joining the group Musicians with Cancer and other Maladies, LinkedIn or Email.

 

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.

 

New Facebook page Musicians with Cancer and other Maladies


cropped-feb12-004.jpgSo there’s no point in saying you’re going to do something if you don’t do it, so I’ve set up the new Facebook Group called Musicians with Cancer and other Maladies. I couldn’t resist the pun because there are plenty of other conditions where people suffer similar effects which stop them from playing, practicing and plying the craft they love.

I would love you to join the group dear reader, whether you have a condition or not, because somewhere along the line, with 1 in 3 people getting cancer, then there’s depression, PTSD, Crohn’s, chronic fatigue and you are going to come across someone who could do with a little helping hand.

Since I told a few friends that I was going to do this, I have had messages and encouragement every day and have played every day. I’m not saying it has been easy, but I wouldn’t have played every day without them.

We are also doing Relay For Life again in March and if you have a spare dollar, you’re support there would be most welcome Last year I only managed about 20 km but my friends helped me raise over $1,500 out of a goal of $1,000.

Anyway, my Hairy Audacious Goal has begun and I want to thank Jane McGonigal and her book SuperBetter for helping me to motivate this, because it isn’t about me, it’s about thousands of musicians around the world who are struggling with cancer or other conditions.

If you have time, check out this short video about the book that got me motivated to start this new mission. It is about how we can use gamification to help with life challenges and ask for help from our friends.

 

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?