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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Life List #5 Go to Hawaii and see Lava from an Active Volcano


If you have been following my recent posts you will know that I have decided to set up 150 values based activities or experiences to achieve in the next 5 years, having been told that I am now in remission from cancer.

White1smI have always been fascinated by lava. Living in New Zealand, I have been to White Island and experienced sulphur plumes, seen active crater lakes and live a few kilometers from Rangitoto Island, a dormant volcano in Auckland. I’ve seen bubbling mud and enjoyed geothermal hot pools, but I have never seen actual lava pouring down a volcano.

So Life List #5 is to go to Hawaii and experience this from a helicopter or whatever safe way we can get to see the fire coming out of the belly of the earth. of course while there, we can also get to experience another part of island life, Pearl Harbor and other aspects of the islands.

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.

 

I’m in remission, Life List and moving forward


lava lavaSo I’ve just been told that I am in remission:) My first question was, what does that mean? I always thought it meant something like being cancer free, but my oncologist said that once you have cancer, you are never cancer free.

So what does it mean for me? For now, no more drugs and tests for 3 months (that’s the second lot of 3 months now) and that in itself is a big relief. I’m still getting my head around it.

I don’t want to write about my cancer as such other than a brief update and perhaps to help others on a similar journey. My fatigue is way better than it was and I am able to stay awake longer than I was, almost normal, although I still nod off if I am in an easy chair, but I am no longer fighting to stay awake at 6:30 PM, (every night) or playing Candy Crush to force myself to stay awake.

I do still tire easily, especially on long work days or trips, but it is getting easier.

RescueI am still not producing cortisol, which is really interesting when you are on a rollercoaster that suddenly races off at a great rate of knots and everyone around you screaming and you’re thinking “hmm this is entertaining”. Or lying upside down in an ocean kayak, in a current thinking “This is interesting, I suppose I should pull the ripcord on my sprayskirt and get out so I can breath”. But I am aware of where I am at and much more cautious when it comes to driving if I am tired, or not looking at my mobile while I walk on the footpath and especially crossing the street with so many red light runners (3 just yesterday as I was going to buy some sushi for lunch).

I meditate every night using the Headspace app, which has been very helpful, especially with sleep and the way I respond to situations. I’ve been doing a lot of work on my values and what is important to me, which leads me to my Life List.

I am listening to The Hidden Why podcast, by Leigh Martinuzzi frequently (amongst many others), which I recommend, he’s pretty good for an Aussie (sorry mate) and a prolific poster and traveller on the topic of Why, which is pretty much the key to everything, right?

Recently he interviewed Danny Dover who wrote The Minimalist Mindset, which I am currently reading. I got it for a minimalist cost on Amazon for Kindle, but I’m tempted to buy a hardcopy as well, because it is the sort of book you want to read with a real highlighter and Post-It Flags, rather than virtual ones, because they are easier to use. In fact I might buy a few copies to give away to friends.

national steelSo I’ve had a Bucket List which I revisited since I was told those three words ‘YOU HAVE CANCER’ and some of the things I wrote about were things I wanted to have, like a National resonator steel guitar, which really doesn’t matter to me, and a Corvette, which does.car

But what Danny did to help himself out of severe depression was create a Life List of 150 things he wanted to complete within a 10 year period and they are values focused and I was inspired to do that. So I officially started that list today and am part way through reading his book.

I’ll blog about the Life List separately because it will be part of my process and I hope it will help other people to focus on what matters to you rather than ‘stuff’ to have or own. I’m also going to work on it with my wife, although there will be things that matter to us and things that matter just to me, so there will be overlap.

It’s a shame that it takes something like having cancer to wake us up to put more effort into life, not that I haven’t put a lot of effort in, but there are many things I could have done better, and many different paths I may have chosen. The important thing is my focus on a future based on my values and I am very clear on what they are. So today on 8 August 2017, I am starting my 150 item Life List of things I want to complete by 7 August 2027.

I have started item 1 and if you want to know what it is, watch this space. It’s pretty cool IMHO.

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

Give me Strength on my Cancer Journey


20160319_205646One of my friends kindly donated to my Relay For Life  event this morning which runs on the 25th and 26th of March and he made a comment to me which was “Stay Strong”.
 
I wanted to share my reply to him with you. My beautiful granddaughter gave me this rock to put a smile on my face.
 
I literally carry it in my pocket every day to represent strength and when I’m tired or having a tough day (which is pretty much when I’m tired which is most days) I give it a squeeze and feel the strength and solidity of this empathetic gift.

 
It is like a taonga to me. Maybe a little of her tiny bit of her Maori ancestry will rub off it into me; as she can trace her lineage to the canoe Mataatua. It’s not a magic bullet, but I feel love, hope and strength in this little rock, just as I feel it from my friends and family who have donated to my Relay For Life campaign and in many other ways.
 
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My granddaughter at one of our first Relay’s. The bag which she decorated contains an LED candle representing hope and remembering loved ones who had or have cancer.

Over the last couple of years I have learned about the strength that comes from having a network of people who care for each other, like those who still send me text messages encouraging me to play guitar. They have been so successful that I have written my second cancer related song and have been playing every day, but because I haven’t had the energy to play for the last year, even an average of 10 minutes every day has given me a bit of tendonitis and with a jam session coming up in a few weeks that I am really looking forward to, I am having to give it a rest for a few days.

I get messages like this every day.

I don’t want to name names, but you know who you are, there are a number of very close friends and a colleague who are way worse off than I am with their battles with cancer and ironically they are right there supporting me. I hope that I have been able to help them a little as well.
I’d like to finish with a little story and I know I get long winded, sorry:) I had two days this week when I really shouldn’t have gone to work, but I had really important meetings. Anyway on Friday I decided to do a little meditation on HeadSpace. I’m not good at meditation and I’m on day 3 of a 10 day program I started a couple of months ago.
So anyway, I go down to the carpark at 2PM for a quick 10 minutes of meditation. About 25 minutes later I get woken up by a very concerned colleague tapping on my window who saw me sitting in my car with my eyes closed and wanted to check if I was OK. Again, that’s another example of the support that is so important and I really appreciate it. As to HeadSpace, the first 10 days are free and you don’t have to use it every day. I like it and understand why so many famous people recommend it. If it works for me, it will work for just about anyone.
So thanks to those of you who are giving me strength with donations to Relay, sending me positive messages or simply asking how I’m doing. For others who are at various stages of your fight with cancer, I am thinking of you, ready to help in any way I can and as I walk around and around the track at the Millennium Centre, your names will be on my lips, in my mind and in some cases on my back on the awesome singlets Empire Promotions have had made for Team Early Birds. Note the number 17 is made up of the names of all the people we are walking for. 2017-shirt