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.

IMG_2082

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.

 

Advertisements

Life List Item 1 of 150 – Go for 2,082 walks over 10 years.


Yesterday I wrote about being in remission and starting a Life List of 150 things to achieve in the next 10 years. 

Item 1 is something I have wanted for years and even considered developing myself. It is a GPS based solution that will allow me to track all the places I have walked  and motivate me to constantly find places I haven’t walked before by logging them on a map, preferably automatically from my iPhone.

I used to do ocean kayaking and used a paper map book. Every time I went out, I did a new stretch of coastline and marked it with a highlighter. Easy to do for sea and tidal estuaries, but not for roads.

So the List Item is ‘Track everywhere I walk and aim to walk somewhere at least 4 days a week over the next 10 years’ That works out to 2,082 walks. I entered it into my iPad app called Make It Happen 2012, which doesn’t seem to exist anywhere or I would send you a link. It looks like this: IMG_0765

IMG_4429I woke up yesterday thinking maybe I should start a crowdfund and get something built and then spent an hour or so searching for apps and eventually found Move which I installed on my iPhone. It tracks all sorts of things including walking, cycling and driving automatically. So that motivated me to do walk number one which was to the local grocer and back with my wife. We did just over 6,000 steps. The app showed where we had walked, not super accurately, but good enough. IMG_4430

I then had to find a way to upload it onto a website so that I could see where I have been and plan new walks, because the app only show each individual link. I found MOVE-O-SCOPE which is now owned by Facebook and connected the two. I thought I had finally found my solution, but now I’m not sure.

moveoscsopeaI connected them as per the instructions and found loads of driving data from 3-4 years ago and also walking data from 2013 and 2014 but not the walk I did yesterday, so I’m hoping this does actually work, or I will be very disappointed. There is a huge market of people that want this functionality and it seems like it is all here. Maybe it needs a week of data before it shows anything, but even the slide only goes to 2014.

movoscopeoldSo I have the app on my mobile, but it’s no use to me without the visualisation because I can’t see on it where I have and haven’t been since 2014. Hopefully this will get sorted because that was still the key.

Meanwhile I do have my first values based item on my Life List, which is to exercise and look after my body, whilst also enjoying being outside and part of my surroundings. I’ve sent them a PM on Facebook and hopefully they can sort me out because there doesn’t appear to be anything on their website.

If anyone reading this can help or point me to any other service that does what I need, I’m keen to hear from you.

 

 

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).