Fighting Cancer with my Family and Friends at Relay For Life 17


2017 shirtGreetings friends. This is a special weekend where we remember those people we have lost to cancer over the years and encourage and embrace those of us who are still fighting this horrible disease.

As you can see on the photo, the team that my daughters created is called Early Birds. That’s because those who get tested and find out early that they have cancer are much more likely to survive and have a good outcome than those who don’t. I am so proud to say that due to my pushing over the last year and a bit, 17 people have had PSA tests and as well as knowing they do not have prostate cancer and in one case no breast cancer, they now have a baseline to allow them to catch it early if they do get prostate cancer like me and their survival rate will go up dramatically if they get a little blood test every year.

You will see the number 17 on the back and my daughter’s name on the bottom of the shirt, which was designed and made by her company Empire Promo. The 17 is made up of the names of the people I mentioned above, family and friends that our team is going to spend today honouring, all night and into the morning walking around a track at Millennium Institute on Auckland’s North Shore. You can see there are a lot of names and with a few late additions to the team there would be more if there had been time.

iPhone 280So today and tomorrow we will be walking to honour our people, to help fund research for accessible cures that save lives and don’t require that people sell their homes to pay for treatment, have somewhere to stay if they are coming to Auckland from out of town, like some of the great people I met when I was having radiation treatment at Mercy Hospital, and to thank those of you who donated to our cause, for your generosity. Whilst we do enjoy the event, the camaraderie and activities, we are here for only one reason, which is to save lives.

If you are one of the many people who donated to my account I want to thank you sincerely for your contribution. This is my 4th Relay and my second as a cancer patient. I am 25% short on my target of $1,000. If you would still like to donate, it isn’t too late and you can do so on my Relay For Life page here. I suspect most of you donated either for me (which is very humbling) and/or because of challenges you and people you care about have faced with cancer. I will dedicate laps to each of you and yours and especially to some very good friends who are still fighting the fight and aren’t in a condition to make it today. You know who you are.

I am planning to post a Facebook Live video at some stage so those of you who are friends with me on Facebook will be able to see a little of the event. For the rest, I will put something on YouTube after the event so you can see it too.

I won’t go on. You can follow me on Twitter under the handle of BluesBro, there will be some photos and tweets there as the weekend goes on. If you see them, please let me know. It would be great to share the event with you.

I do also want to send out a special thanks to my friends and colleagues at the New Zealand Transport Agency and Auckland Transport who have supported me in so many ways to date including donations, but much more than that. It hasn’t been the easiest of years and with awesome people giving me encouragement and helping me out during the tougher times, it has given me strength and Hope. iPhone 141

Musicians with Cancer and Other Maladies is NOT about money or donations, or benefits, it’s about Friends reaching out for each other.


Yesterday we had the opportunity to catch up with some old friends we haven’t seen for a while, you know the kind, where the years melt away and it as if the last time you saw them was yesterday. Of course one of them also had cancer, you can’t escape it, so that made two of us.
There was classic discussion about how do you talk to people with cancer and there’s no easy answer to that. Don’t ask “How are you?” We get asked that all the time and you probably don’t want to hear the answer. Also, when we are getting treatment the doctors and nurses ask how we are doing and need to train us to share all the gory details, so you could find that asking that question leads to even more awkwardness. By all means do ask if there is anything you can do to help. I’ve had lots of kind offers, most of which I haven’t taken up, mostly because of fatigue, but the offers mean the world to me, truly.
One of our friends asked about my new Facebook group Musicians with Cancer and other Maladies and asked if it was about getting donations. The simple answer is a resounding NO. I’m not looking for money, I’m not after benefit concerts; and having trolled YouTube looking for something similar to what I’m trying to establish for other musicians, I can’t find anything. They all seem to be about donating to research or people who need help. So I understand why people might think that.
That’s great because it shows there is a need for something different. This is just about helping a friend. A lot of the videos I am posting are asking for money at the end of a heartbreaking story. There are groups who need that and we support many cancer charities and our Team, the Early Birds will be doing our 4th Relay For Life in March, but that is nothing to do with  this page.
s1560019-2What people need most is the encouragement of friends. For example when people shave their heads in support of cancer, what matters to the cancer sufferer isn’t the money, it’s the gesture of solidarity. When my beautiful empathetic granddaughter had her hair cut (which was her idea), it was so that it could be made into a wig for someone with cancer who had no hair.
So please, no money, I’m just looking to create an environment where people who have friends with a condition that makes it hard for them to motivate themselves get some support.
I’ve opted for musicians for a number of reasons, probably the most important is that playing music is cathartic, it generates good feelings for both the musician and the audience. But what I’ve found is that sometimes due to chronic fatigue in my case, or perhaps depression in other cases, you just can’t bring yourself to pick up your instrument, or if you pick it up, you don’t have the energy to play it.
motivational-txtHere’s an example of what I mean. I received this from a good friend who sends me a message every day. I also get similar messages from friends who are much worse of than I am.
I can tell you that even when I really feel too tired for anything and fatigue is a bitch, nothing like just being tired or sleepy, but I get the message and off I go to the music room and play. It helps my soul and spirit even if I don’t feel like it.
But this isn’t about me, it’s about creating a movement of people helping people. It looks like it’s going to be a hard slog to make this work but joining the Facebook Group even if you don’t know anyone with cancer right now, you will. Just knowing you have friends who care makes a big difference. If they see you post a comment or share a photo, video or story, you will make a connection.
This is an example of what I’m talking about. Not the advertisement at the end, just the concept of friends being there for each other.
Anyway, as usual this is turning into a book. My request for you is as a friend or associate of mine or of anyone that has cancer or depression or PTSD or whatever, join the Facebook group and tell a friend you are there for them. A lot of you are serial networkers and you can help by spreading the word through your network. You will be doing a good thing.
So send no money, just help pay it forward if you would be so kind. If music means something to you, if it has ever helped you, if your friends matter to you, this is a really small thing that could mean the world, even if just to a couple of people.
Thankyou so much. Feel free to leave a comment.

I need a little help from my friends


Mercy ScannerSince I was told those words “YOU HAVE CANCER” I have been wondering how I could turn it into a positive. I’ve seen so many people on TV on shows like The Voice and they all have a story of troubles that they turned into amazing success stories.

It’s taken me two years to come up with a HAG. It’s not fully fleshed out yet and it is full of challenges and I’m hoping for my friends to help me out.

I’ve always considered myself a survivor, but I’ve struggled at times and often feel embarrassed when people suffering 100 times more than I am, try to make me feel better.

I’ve been reading an awesome (but huge as friends and fellow sufferers I have bought copies for) book called SuperBetter by Jane McGonigal which is all about using gamification to help yourself deal with chronic illness and trauma. Between that and two sensory deprivation floats over the last 2 days at FloatCulture in Auckland, I’ve come up with 4 ideas. I will flesh them out later, but I’m looking for a little help now and a lot in the future and I’m hoping you will find a way to join me.

Another Stretch in Iraq

  1. I am a singer songwriter, or at least I was before I got sick and I want to be again. Over the last 2 years I have struggled to play my guitars. I typically pick one up, play for a few minutes and put it down again. I struggle with chronic fatigue. In recent times I have often had to go back to bed during the day and even if I have slept most of the afternoon, I’m likely to be asleep again around 7:30-8PM. Here are some things I want to do:
    1. In about 9 months I want to do a gig somewhere with great acoustics, playing my originals (including new songs about dealing with cancer) with some backing from other musos.
    2. As per the SuperBetter program, I need 2 or 3 people (close friends) to check up on me and help me stay on track. That might be texting me or giving me a call each day and asking how my music is going to make sure that I stick with it, even if it’s only for five minutes.
  2. I’d like to help other musicians with cancer who feel the same way and would love to get back into their music but are struggling like I have. It might be that I can put together some sort of guidelines (everyone is different and it isn’t paint by numbers) based on my own experience, such that they can come up with their own model and get help from their friends to achieve the same results.
  3. If  we can achieve that, wouldn’t it be awesome if we could put together a gig/s of songwriters and musicians who have cancer or are in remission around New Zealand? Wouldn’t that be something amazing to aim for!
  4. I need a lot of help. At the end of this year I had most of the last 2 weeks off sick because of fatigue. I spent most of that time sleeping day and night. I need my job (both because I love it and because I need the income) but I’ve been struggling to front up. I need help putting together and maintaining a website or Facebook page to tell people about this initiative. Bottom line is it is going to be a struggle just for me to play every day (and keep my job), let alone grow this thing into something that will give energy and bring a spark back into people’s lives who are suffering and struggling just to get from one day to the next.

So what do you think? Is this a good idea? Do you know anyone who is a musician with cancer (or in remission) who has struggled like I have to motivate themselves and get back into it? When I have been able to play and write, like the song I wrote, which I blogged about here in a Cancer Meltdown,  it was extremely cathartic. Music is a healer.

I will be approaching a few close friends directly to assist me in my immediate journey to play every day. But for the other things I can do with a lot of help. Do you know songwriters and musicians with cancer? Do you know people who want to help them? Can you help in some way?

Can you please share this post with people who you think might be interested?

I’m going to try with a little help from my friends, actually a lot of friends if possible and friends of friends, because it’s 10 in the morning and I’m already tired. But I am going to play today.

Thanks for sticking with me. There is a lot of work to do and I can’t do most of it. We all know music is good medicine and can help drive a positive attitude. A lot of beating cancer is about attitude.

For now you can contact me through my blog. I don’t want to put my email address on here and attract phishers. Since I wrote this blog, I now have a Facebook group called Musicians with Cancer and Other Maladies. Please check it out and share the word.

Again, please share this so that we can help other people in a similar situation to me. Thanks a million.

 

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).

Michael Q Todd is a Social Media Expert


The world is full of self proclaimed social media experts, many of them legends in their own minds. Every once in a while you come across someone who not only really does understand how it all works, but one that practices what they preach. 

Presenting at his Auckland Seminar

Presenting at his Auckland Seminar

One such person is Michael Q Todd. I had the pleasure last week of meeting him in person in Auckland and attending one of his seminars which was a pre-launch of his upcoming book The 7 Pillars of Your Online Success. Michael is an ex-pat Kiwi who lives in Japan with his lovely wife Dr Yoriko Todd.

The mix of attendees ranged from total beginners to very experienced people including Sean Mitchell of Techday, Jason Kemp of Dialog Ventures, Mark Thomas of 2Review and Roger Bennett, one of New Zealand’s serial networkers and connectors, all people who are very passionate about what they do. You have to be, to go to a 3 hour seminar on a weekday evening. There was a quality of debate, illustrating that one size doesn’t fit all and Michael managed the proceedings like the pro that he is.

I’m not going to tell you about everything he covered, it was an introduction to the new book and one that I am very much looking to receive an advanced copy on. I’ve read a couple of pre-released chapters and they are winners. You may be very good with one application or aspects of an application, but be missing out on others. Another is that this is a changing environment. Social media sites such as Facebook, LinkedIn and Twitter are constantly adding and modifying features, you need to keep abreast of these. New services like Vine, Empire Ave (one of my current favorites, you’ll find my account here)  and Posse  are popping up all the time. Some of these will be valuable to you. Never assume you are up to date, because you will be wrong. If you don’t keep up to date, you could end up like this moth (not for the squeemish) I captured on my second Vine attempt, being devoured by a praying mantis.

This is one of the reasons I really like

Following are a 3 key takeouts for me:

1. It’s about selling. Anything you do is social media has to have a purpose, an end game. It is usually to sell something. It could be the products or services you provide to customers, it could be selling your consultancy, or perhaps promoting your sporting activity, music or hobbies. Start with the end game in mind.

2. Three things that brand you. People get confused when you tell them you do lots of different things. Define the 3 most important things, based  on (1) above. Give this some serious thought. If you have too much going on, narrow your focus or you will confuse people and won’t sell much of anything. For me, I am

3. Plug the gaps. One for me is Lists. I used to have a very successful newsletter many years ago which I sold as part of my consultancy and training school, the New Zealand Smartphone and PDA Academy. It had a large following and I really enjoyed the feedback from readers. Lately I thought that social media had replaced email newsletters, but now realize that they add another dimension. What are your gaps?

Once in a rare while you meet someone who will make a profound and positive difference in your life if you let them. I have had a few of those over my years and I believe that Michael Q Todd is going to be one of those. Whatever business you are in, or want to be in, whatever role you currently play in life, you are a brand and Michael can help teach you how to focus and market that brand and to reach the results you desire. You can find out more about him on his website.

I’ll leave the last word to Michael from one of his many YouTube Videos