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.

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.

 

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I’m in remission, Life List and moving forward

So 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.

I 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.

So 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.

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.

I need a little help from my friends

Since 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.

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.

 

Relay For Life 16 Thank you, Thank you, Thank you

It’s almost over and tomorrow is the start of the big weekend. I want to thank all of you for your amazing support for my journey with prostate cancer and Relay For Life 16 which starts tomorrow.

If you are in the neighborhood, the Opening Ceremony at the Millennium Institute will be at 3:45 PM and I will be one of a small group giving a brief speech, which is a huge honor in part due to the number of you who have donated to our team Early Birds. Following that we have the first lap led by those of us who have been told “You have cancer” and our supporters and partners. It would be great to have you join us if you can.

If you want to come and say hi or walk a lap with us, our tent is at site A8 right on the side of the track on the opposite side to to main Millennium building.

We have dropped to 5th place in the fund raising rankings, being beaten by 3 schools and a bank, which are hard acts to follow as we are just a small group supporting friends and family. But what a great job you have done! For me personally you have donated over $1,500, our team over $6,000 which adds up to about 4% of the total of around $150,000 which will help the Cancer Society save lives and make the journey easier for cancer sufferers like myself.

I want to give a special thanks to Gemma and Tracy, my daughters, who set our team up for me after asking what they could do to help me get through this horrible disease. They have been awesome. Also to Gemma and Mark for the awesome singlet and hoodies they designed and had made. The 16 (for 2016) is made up of the names of the people our team are walking and running for (for 18 hours!), so we can carry those people with us.

It’s not too late to donate $5 if you haven’t already done so, by going to my page at https://aucklandnorthrelayforlife2016.everydayhero.com/nz/luigi. It’s also never too late to go and get a PSA test guys and I am so proud that 13 of you have been motivated by me to go and get tested and as well as all being clear, now have a base line for future tests.

I will be posting pics on my Twitter account https://twitter.com/bluesbro so if you want to stay in touch and see what’s happening and send me some support.

I am very grateful to the Cancer Society for what they do and to your for your support. This isn’t just about supporting the 1 in 3 people in NZ who will be diagnosed with cancer during their lives (think about those numbers in terms of your family, friends and colleagues), it has also been a welcome distraction for me, something to be focused on and excited about.

As I go through this journey it is about having things to look forward to and making the most out of one day at a time. I am working on lots more things to look forward to, but most of all it is about friends and family. Things are cool, but ultimately its about people and you have helped me more than you realise.

I have never been one to ask for help. The support helps me, but the money may help you and yours in the future. The Cancer Society is not funded by taxes, rates or anything other than donations. So this is the last time and I won’t be asking again. If you can spare $5, please do so at https://aucklandnorthrelayforlife2016.everydayhero.com/nz/luigi.

Thank you, thank you, thank you. Now I have to get to work!!!!