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?

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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

Prostate Cancer Radiation Treatment is Over


I finished my 37 days of treatment last week and it was an unusual experience, a little emotional almost like leaving a job. They told me I was a model patient, I had followed all the instructions about diet and exercise and only had to get off the table once over the two months (because of wind). The average I’m told is 6.

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The faces in the lounge were changing and the people I had started to get to know had moved on and like me will be waiting for news of successfully shrinking or obliterating tumors. I had my last walk past the electric aquarium designed to relax you as you walk to the table. IMG_3489

I thought about asking if I could take some photos while the giant machine was rotating around my body, but I decided I didn’t have the energy and the answer would probably be no, because you can’t move an inch while it is operating, or risk damaging healthy parts of your body. I won’t ever forget it anyway. Mercy Scanner

When I finished, they gave me a lovely card full of congratulations handwritten by a dozen or more of the staff I had come to know, goodwill messages and instructions not too work too hard. It was like leaving a job. Very touching. I can’t tell you how important it is to have good people looking after you, who really make an effort to get to know you and keep your spirits up, whilst prepping you, which can be intimidating and embarrassing.

IMG_2153So I was out of my lava-lava for the last time and off to see the nurse.

lava lava He told me that my side effects are going to peak in around two weeks. I got a form telling me that the tiredness Apparently despite taking a drug to reduce the may last up to a couple of months after the treatment, then I should start feeling my normal self again. There are other side effects that may develop several months or years later, but lets get rid of the cancer first!

We discussed that the drug I am taking that reduces the side effects like having to pee painfully every hour and having to go again 20 seconds after I thought I had finished, my blood pressure was fairly high. Kind of understandable given what my body is dealing with but a side effect of the drug is that it lowers your blood pressure. That’s a little bit of a worry because my GP is always telling me that my blood pressure is usually low and better than his. I’ve had the odd moment when I get up and get that blood gone from the brain wooziness, but I’ve learned to get up more gently. It wouldn’t do to find myself on the floor in the middle of a business meeting!

He told me to take it easy with my diet because my body has now adjusted to the changes and I will suffer if I try to go back to everyday food too quickly. He was right, but that’s another story.

 

 

Coping with stress in Christchurch


Never before have we experienced a situation such as exists in Christchurch today. As was seen on Campbell Live last night people are at breaking point. Even the ambulance officers who were interviews, some of whom  had lost their own homes appeared to be close to losing it, fighting on because they are trained to, because “my uniform says I am there to help”. Men saying they “Cried last week for the first time in 20 years”.

The situation is looking incredibly serious. We have our 2nd largest city full of people suffering from Earthquake Syndrome. Interestingly it is very difficult to find information about the psychological impact from a New Zealand perspective, which I blogged about yesterday it seems as if the authorities are keeping it as quiet as possible, worried that it will get worse if people start talking about it.

In the absence of anything else, I think that is exactly what they should be doing, but more on that in my next blog. Maybe its naive of me, but today as a citizen of NZ with no mandate or authority I emailed Dr Martin Seligman of the Positive Psychology Centre at Penn University. In the US they experience repeated incidents of natural disasters in certain areas and of course with their military forces they also have extensive experience in PTSD. In NZ we really have no skills to understand or deal with repeat natural disasters and their human psychological consequences at a level like this, which in my opinion is why we are doing very little about it. We aren’t coping with the demands of repairing buildings, deciding which suburbs stay or go. We still aren’t dealing with the damage to buildings and the EQC is not paying trades people who are close to losing their businesses for trying to help people keep their homes habitable.

If you haven’t seen the Campbell Live tent recordings where they left people in a tent without any interviewers prompting them, to say how they feel, watch the following video and tell me you are not moved.

I feel sick and sad this morning


Footnote to my story in November called “Why don’t auckland hospitals work smarter rather than harder.” and the previous one The Hospital is the best place to be when you are sick, or is it?

My friend passed away this morning after an agonising battle with cancer. One has to wonder how much easier it would have been for her if she had received the treatment she was entitled to at the times she was turned away due to strikes and staff shortages. I’m sure she would still be with us today if she was able to receive the treatments and surgeries she was scheduled for.

Her husband is one of those nice old school Kiwi guys who listens to what he is told and didn’t want to rock the boat. He refused to fight through the management or the media to get the treatment his wife needed because he felt that was not the way you behave. Now he has lost his wife and soul mate too soon. We had to respect his right to be true to himself, but I’m not sure we have to accept the system that put him in that position.

My advice, if you are in a situation like that, where lives can be saved or prolonged and the bureaucratic penguins and the system is holding stolidly fast to this is where the line starts and if you’re not there anymore when you get to the end of the line, will the next patient shuffle forward, make a noise like someone’s life depends on it, especially if it does. People who go to the media miraculously get the treatment they need and sometimes before its too late.
We Kiwis need to stop being PC and accepting the bs that comes from our health industry. Note its not the wonderful hospital staff, they are put in an invidious position by the administrators, by the beurocrats and by the politicians who sleep sound at night and whose close ones are probably not getting turned away because “a registrar is off sick and the shift couldn’t run”. They are the ones who have to lie to the patients and their families when cost cutting measures, old fashioned systems full of lost paper files and ancient systems, and cost cutting means many people don’t get their surgeries, live or die in pain.

This person’s story is over. We won’t be going to the media or fighting because it is not what her husbands wanted. I respect that and much as it burns me, I will not add to his grief or risk creating feelings of guilt to him to make matters worse. He came from a generation who said yes sir, I know you are doing your best and genuinely trusted that. She may still have died, in fact probably would have, but she might have had a few more years and she certainly wouldn’t have suffered the degrees of agony of that she did over the last 4 months. We don’t do that to animals.

If you find yourself in a situation like this, make a noise, get your loved ones help, let the media know and as a country we have to get our government and administrators to invest in the new technologies that in the long run will cost less and save more lives.

Why don’t Auckland Hospitals Work Smarter Instead of Harder