If You Think You Are At Risk of Getting Cancer


IMG_2290Sort out your insurance before you get tested, so that you know you will be covered if you do get cancer. As some of my friends know, it’s a very expensive condition. One of my friends had to sell her house to help cover the costs of treatment because her insurance cover only paid for 60% of the treatment costs and whilst going to public health is an option, this is something you want to deal with as quickly as possible.

Perhaps like me, there is cancer in the family, or you are getting into your 30’s or 40’s it is worth checking out cancer insurance.

We just found out that Southern Cross has optional Cancer Assist insurance. I wish they had told me a few years ago, although, like you, it never occurred to me that I could get cancer. It’s always someone else that I feel sympathy for.

Unfortunately by the time I found out, I had already been told “You have cancer“. Fortunately I did have income protection insurance with a one-off cancer payout, because the first thing that my insurance broker, Tom told me when I let him know that I had cancer was “You are now officially uninsurable.” Ironically I didn’t know that I had a policy that included cover and my broker volunteered to look for me, even though he didn’t sell me the particular policy. I am extremely grateful to Tom Fox of Canopy Group for helping out. If you need a broker, tell him I recommended him. He took a huge weight off my mind in a stressful time.

Fortunately Southern Cross medical insurance has paid a large chunk of the many biopsies, MRI, CT and other scans, radiation treatment, countless specialist visits and more, but if I hadn’t had those insurances, I’d be under some serious financial pressure right now.

As a male in New Zealand, you have a 1 in 9 chance of getting prostate cancer. If you had those odds of winning a lottery you’d think that was exciting right? Not quite so exciting with those odds of getting an illness.

I can’t remember how many people got tested because of my pushing and prodding, it must be getting close to 20, but I would be horrified if some of those people didn’t have cancer cover before they got tested and found they did have it.

EarlySo here’s my plea to you. Get cancer cover. Sort out your life insurance, then even if you feel perfectly healthy, get tested. Mine was found early and probably saved my life. We begrudged paying the premiums for years, saying what if we had put that money in the bank, but you don’t right?

 

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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.

 

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

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.

 

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.

Why Don’t Grownups Understand?


When you are a child, everyone around you is a potential friend. Someone to play with, have fun with. Language, color, gender, disability, don’t matter. You see them in the playground, looking for someone based roughly on age and height, they make eye contact, they do a sort of ‘I’m open for contact’ dance, getting closer together and then just start playing together. Often they won’t even introduce themselves. Next thing you know they are laughing and playing and bringing more kids into their circle. In many cases the parents stay at a protective distance, but appreciate and encourage this interaction.

I used to love watching kids TV programs like Art Linkletter and Cosby Kids. I think one of the famous ones was used in the What The World Needs Now John F Kennedy assassination tribute, where they asked a kid what racism is and he said “I think it’s when you’re sick.” They asked “what is bigotry, and the answer was “I don’t know what biggory is.”

When WWII, ‘the war to end all wars’ was over, there were famous speeches, saying “this must never happen again”. Today it appears we have learned nothing. It may to some degree be propaganda when we see children carried, walked or driven away from bombing sites. The fact is, they are children and they are victims of man’s inhumanity to man. It continues daily in many parts of the world.

I don’t need to show it, you don’t need to be reminded of the actual scenes. It will be on CNN, BBC, Fox or your other favorite news TV station in the next 30 minutes, day after day.

So here’s my question? How do we go from kids, who understand that differences make us interesting, to adults who think we should all be the same and that to be different is a threat? How do we go from sharing our resources to wanting to take them from each other?

At some point we decide children should think along certain lines. We teach them prejudice, we teach them fear and hatred. We teach them on the street, in our homes, we teach them in our schools and we teach them in our places of worship.

I watched the kids in Gaza on TV last night. I saw the looks in the faces as their bodies and lives were wrenched apart, the confusion, the terror, the blank gazes of minds dazed beyond comprehension They were just playing. They don’t understand. They’re just kids. But I’m an adult and I still don’t understand. Does that mean I haven’t grown up?

One of the real ironies to me is that we all have kids. We have all been kids. We have all been taught prejudices by our parents and those around us.

So here’s a thought. Why don’t we change the curriculum?