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.

Helping Soldiers with PTSD through Music


As you know, a few days ago I set up a new Facebook page called Musicians with Cancer and other Maladies. It is about people helping other people. Today I came across a group that help soldiers with PTSD by using songwriting to express themselves and tell their stories in a trust environment, which is helping a lot of people, even those who are not musical themselves, or don’t realise they are.

Several years ago I wrote a song called Another Stretch in Iraq. You can hear a demo on my Reverbnation page. It was motivated by a newspaper story of a service woman who came home looking for some love and normality only to find that her man had left her for another woman. A common story sadly.

I joined a military blogging (milblogging) site and spent a good year or so talking to military personnel, mostly serving overseas at the time to get a feel (as much as that is possible, given that family members who served almost never spoke about their experiences when a civilian was present).

They trusted me and I learned a lot about their lives, their hopes, their agonies in losing brothers and sisters, general life and the isolation from their families where their fellow soldiers in fact became their families such that many could not and still can not adjust to civilian life without their brothers and sisters from he service.

When I was in Orlando some years ago, I played a couple of sets at a biker-friendly bar in Longwood and my song Another Stretch in Iraq was one of the songs I played with some great backing from the house band. I wish I had taken some photos because it was the classic bar with 30 Harley’s in a neat row out front, sawdust on the floor, the sort of place that Kiwis only see on movies and TV shows and that the cab driver thought I had no place being until he saw the friendly bear hug greeting I got from the woman who ran it.

After finishing the song a group of 6-foot something burly men came up to the stage. The biggest of them all came up to me with tears in his eyes and I thought I was about to become roadkill. He and his friends looked me in the eye and then he shook my hand and said I took him right back to the theatre at Desert Storm. He re enlisted twice and his son had just left for Iraq a week ago.

It was so rewarding to me that I had captured the emotions and environment with integrity and that the song gave them some comfort. I haven’t worked harder on a song and would love to record it professionally. It is on Reverbnation as a free download and is also on a couple of sites of free MP3 downloads that is made available to all serving US military.

Back to the Facebook page. There are thousands of returned servicemen in dozens of countries who suffer from PTSD. They come from all walks of life and many of them play musical instruments, or used to. Many of them can no longer motivate themselves and need a hand. Some of them join groups like the one in the video above. Many will not join groups, either because they can’t or won’t ask for help, because they don’t want to appear weak, or because they are still in service and don’t want to jeopardise their careers by showing weakness.

The concepts in this Facebook page mean that all they have to do is talk to a few friends and family that they are close to and trust. Then all they need to do is ask for a little encouragement, it’s as simple as that. For those who wish to or are able to contribute stories, I am hoping they will join the Facebook Group because it can only grow and flourish if they know about it.

I’m hoping that if you know people like that, you will share this post or the link with them so that they can be made aware that help is available and whilst it is not easy as it sounds, with a little help from their friends it can happen.

As John Lee Hooker and my idol Carlos Santana sang, Blues is a Healer. It heals those who play it as much as those who listen to it. If you can help someone pick up their instrument, or raise their voice and break the silence, you can have a profound influence on people’s lives and it can be as simple as my mate Rob sending me a TXT message saying “pick that gat up and play for 10 minutes man.”

If you know of anyone that could benefit, please share the Facebook group with them and perhaps join us yourself. My thanks on their behalf.

New Facebook page Musicians with Cancer and other Maladies


cropped-feb12-004.jpgSo there’s no point in saying you’re going to do something if you don’t do it, so I’ve set up the new Facebook Group called Musicians with Cancer and other Maladies. I couldn’t resist the pun because there are plenty of other conditions where people suffer similar effects which stop them from playing, practicing and plying the craft they love.

I would love you to join the group dear reader, whether you have a condition or not, because somewhere along the line, with 1 in 3 people getting cancer, then there’s depression, PTSD, Crohn’s, chronic fatigue and you are going to come across someone who could do with a little helping hand.

Since I told a few friends that I was going to do this, I have had messages and encouragement every day and have played every day. I’m not saying it has been easy, but I wouldn’t have played every day without them.

We are also doing Relay For Life again in March and if you have a spare dollar, you’re support there would be most welcome Last year I only managed about 20 km but my friends helped me raise over $1,500 out of a goal of $1,000.

Anyway, my Hairy Audacious Goal has begun and I want to thank Jane McGonigal and her book SuperBetter for helping me to motivate this, because it isn’t about me, it’s about thousands of musicians around the world who are struggling with cancer or other conditions.

If you have time, check out this short video about the book that got me motivated to start this new mission. It is about how we can use gamification to help with life challenges and ask for help from our friends.

 

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. Once I have a Facebook page for this project, we can communicate in one place.

Again, please share this so that we can help other people in a similar situation to me. Thanks a million.

 

Nasa Seven Seconds of Terror


I’m exhausted today, it’s been a really long intense week. So while I relax I’m thinking in a different direction: GPS.

I’ve been reading an awesome book called Pinpoint by Greg Milner and it has had me thinking in so many directions. It’s hook says its about How GPS is changing Technology, Culture and our minds. I suspect most reviewers touch on it pretty lightly because some of it is pretty geeky, although it is very readable. What is really scary is how much we rely on GPS for everything we do, which explains why there are so many projects to come up with land-based solutions for PNT.

Because it is Saturday and I am trying very hard to not think about work, I have gone off on a different tangent, which is space exploration. On Earth we now have the capability of measuring the centre of our potato shaped planet to about a centimeter, which makes navigation pretty accurate in 3 dimensions, although this doesn’t mean driverless cars can navigate to that degree, because whilst the car knows exactly where it is, it still requires phenomenal datum to know where the road is, but I’m getting back into work mode.

So when they get into space exploration, as Tomas Martin-Mur, a NASA engineer said, “The symbol I like to use is that we navigate the spacecraft by looking in the rear view mirror.”

I thought to myself that it is therefore obvious having disastrously lost spacecraft going to Mars, that the logical solution would be to invest in putting satellites around Mars and then as they travel further into our solar system, doing the same with other planets. First they can then avoid the seven seconds of terror

and then they can navigate usng the timing signals of Earth and Mars based satellites and then when the have a third planet set up, they will really start to be in a position to navigate accurately.

Why? For a start it means they can land accurately because they know where they are or will be despite the limitations of time and space. Secondly there are potentially all sorts of materials for harvest, potential for scientific research into how we came to be here and lots of commercial benefits.

I think Elon Musk is playing the big game and not just about getting to Mars, but given reduced budgets in the Space Race, he s potentially putting himself in the drivers seat, both for Mars exploration and establishing bases or even hotels there, but also as a forerunner to space exploration.

Isn’t it ironic that the man behind Tesla (the driverless car I’m not talking about because it’s a bit too close to work) is able to fund research that ‘The Greatest Country on Earth’ can’t? Of course as soon as they are successful, the revenue potential for his company SpaceX is astronomical if you will pardon the pun.

Of course on the other side of the world Richard Branson has figured out the same thing. Whilst Virgin Galactic is promoting paid space flight trips and I have friends eagerly awaiting their turn on flights they have already paid for, Branson is also talking Satellites. After all its not good for business to lose a commercial spacecraft full of some of the wealthiest and most influential people on the planet.

As Branson says “This is rocket science.” The video also says that the 700 people signed up is more than have been in space more than have been in space in the history of space travel. It also points out the profound impact that each traveler on the ‘return trip’ will bring back to their communities around the world.

So, its been a fun distraction. It is amazing to me that a few individuals with very BHAGS (Big Hairy Aggressive Goals) are changing the world where Governments appear not to want to look that far into the future, whilst they know they need and want the outcomes. I guess that is the difference between people who are in it until the next election vs people who are committed to the outcome no matter what. When Branson was asked if he came near to giving up after the crash of his first spaceship, he said he never came near to giving up.

I am inspired by people who keep their eye on the prize. It gives me hope that sticking with my minuscule in comparison goals, such as encouraging citizens to use real time travel information to make smarter decisions on their journey plans to minimize the impact on their own journeys and in doing so, ensure that growing cities can prosper even though they are land poor and can’t keep up with the travel needs of their citizens.

We each have a place in society, whether it is the taxi driver, the person clearing tables in a food hall, or an entrepreneur who sticks with his guns despite everyone who says “You can’t do that.” I just wish I could live a hundred years and see where humanity goes. Will we be egocentric or ecocentric?

Are you still with me? What do you think?

 

Christchurch Cancer Patient Denied Test by TWO GP’s


 

After all the effort that the Cancer Society commits to educating people about the importance of catching cancer early, two doctors telling a patient that he didn’t need tests, as told in Stuff a couple of days ago amounts to malpractice in my humble opinion.

There was a comment about a GP who might have felt uncomfortable with doing a DRE, I’m not comfortable having one and it’s a level of relationship I never planned to have with mt GP. That wasn’t what raised the alarm bells for my cancer, it was the fact that rather than fluctuating as normal, my PSA levels from a tiny little blood test, had increased consecutively over 4 tests.

All credit to my GP because I was still within what is considered normal levels, however biopsies found 3 then 5 tumors.

Mercy ScannerI’ve since had radiation treatment for 8 weeks and am now on hormone treatment ad my latest test showed a small improvement for the first time.

EarlyMy Relay For Life team is called the Early Birds, because if we hadn’t found them then, I would probably be in a similar condition to the person in this story. Now I have the possibility of a full recovery. At the pace the multiple biopsies showed the tumors were growing, un-diagnosed, I would have been facing a potential death sentence.

20160319_133814

I know a lot of people don’t like the idea of a finger up their jack-see but all I had to start with was a PSA blood test that takes about a minute at your local test lab.

To the doctors, I say read your journals, attend your local local GP group meetings and have at least one person in your practice that is up to date with Prostate Cancer. For the rest of you mortals, did you know it’s BLUE September? The Cancer Societies on many countries around the world are running events this month. Find the info for your country here. I’m going to a Poker Night at Sky City Casino. I used to go to a tournament every month but these days I am too fatigued and generally fall asleep at around 7:30 every night, but I’ve told my boss that if I do any good I will be sleeping in the following day:)

Don’t freak out about getting tested. You can just go for the PSA test for starters if you don’t have any other problems. Do get the test, BUT:

Sort out your insurance before you get tested if you have never been tested. 

When I told my insurance broker that I had been diagnosed with cancer, he said “Luigi, my friend, you are now un-insurable.” Imagine getting tested getting a positive result and not having health insurance. Even with health insurance we have had to top up the gap in terms of tens of thousands of dollars.

Bottom line, I choose life. I have a chance and in fact for the first time in 18 months my PSA levels have dropped 12%. Obviously I want 100%, but its the first positive sign towards recovery. If I had visited one of the GP’s that Graeme Pollard went to, my options (I don’t know anything about his prognosis) right now would probably be either prostectomy surgery (with high risk of nasty short and long term side effects) or hormone treatment at much higher doses than the pills I’m taking now.

I don’t know what our rights are in cases like this and it sounds like a GP can do and say what they like and not be held accountable.

Yes, there is a school of thought that it is better not to know. Sir Paul Holmes the renowned Kiwi broadcaster said on TV that he would rather not have known. I know my life expectancy is now longer than it would have been if I didn’t know and knowing has changed my attitude towards life. I want to enjoy it and am no longer thinking about what I might do if I save my pennies for when I retire at 70.

Here’s a couple of facts for a small country.

  • Around 3,000 men are diagnosed with prostate cancer in New Zealand a year. That’s 10 a day!
  • Around 600 men die in New Zealand from prostate cancer every year.
  • There is no miracle cure but research is happening at a fast rate and looking very positive.
  • Whilst we are a society that says (It won’t happen to me) 1 in 3 people in New Zealand will be diagnosed with some form of cancer in New Zealand.

Here’s an interesting little exercise. If you are catching up with your family or friends today. Play a little game. Put them in a line and get them each to consecutively call out 1,2,3. Every person who calls ‘3’ goes and stands on the other side of the room. Now tell them they have cancer, because we don’t have a choice over which one it is. If you wanted to make it interesting you could include all regular smokers. My father in law died from throat cancer from being taught how to smoke in the war and we believe another uncle has lung cancer from the habit he developed with free cigarettes while serving his country in Korea, but I digress.

If you are male, over the age of 50, get your insurances in order and go and tell your GP you want regular PSA tests, at least once a year. If he refuses, get a new GP that cares about you. Prostate Cancer is not a death warrant, especially if you get it early. Never knowing you have it, will very likely reduce your life expectancy. If you had a choice to live a bit longer, would you choose life?

Be an early bird.

 

I got Chastised for Owning a V8 Last Week


I felt like I was being made out to be a bad person and it shocked me. I’ve always considered myself a green person. I have planted tens of thousands of trees, lobbied for feed-in tariffs to make it attractive and economical to get the masses to install solar power. I’ve encouraged ride-share systems and spend a lot of my working time encouraging people to use public transport and to reduce the impact of congestion. I point out to people when their car or truck is blowing soot from the exhaust pipe and if I pick up rubbish that others have thoughtlessly discarded.

Since I was little I always loved Corvettes. As a boy i would watch them on TV and see the odd one in real life. As an adult I had a business associate who owned one while I just had a replica model.

20160611_175607 (2).jpgThe colleague who castigated me used to work for a car manufacturer and has a passion for motor vehicles and motor sport and maybe he was just envious of me that I have a sports car, but it made me feel bad. It shook me, perhaps because the car is an indulgence.

I didn’t bother telling him that I have cancer and that it made me decide to do a few things for myself and my family that were on my bucket list, things that like most of the people I know, I never expected to achieve. Anyway, now when I drive my 350 Chevrolet, people give me the thumbs up, kids stop and look at it as  drive past as I did so many times when I was little and I see big grins light up on their faces, just like I did. People compliment it and I feel like they feel happy for me in gas stations. They don’t know my circumstances and might think I’m rich. I’m not. The only new vehicle I have owned in my entire life was a no gear pushbike.

I have my dream car and I spend as much time cleaning it as driving it, which I find therapeutic (it helps me take my mind off my next lot of tests), while listening to business coaching, self improvement and music podcasts. It’s in great condition, doesn’t blow smoke (and neither do I), I never deliberately speed (in fact I am helping to test a green driving app) and  so the engine is never working hard, it is in fine tune so there is very little pollution, in fact I think it drives much cleaner on high octane petrol than the average car let alone the diesel soot smeared black smoke spewing trucks I see delivering frozen food to retailers.

I have spent half of my life working in voluntary unpaid positions after work, from boards and committees including as a Civil Defence Rescue Team Leader, Chair and committee member of boards including a music centre that has taught thousands of children to play music on instruments they couldn’t afford to own, volunteered in a food centre providing vegetables at farm cost to people who couldn’t afford to pay retail, fund a guide dog, support charities and worked hard all my life.

I indulge myself a little when it comes to my guitars and continuing to lean music and have done some travel (most of it on business with very little time for myself) and I consider myself to be a good citizen. Don’t get me wrong, I’m far from perfect and have room to be a better person, but I do care about my community and my environment.

But I do have cancer and I do have a bucket list. I thought I’d wait until I retired before I went and had a but more fun and I’ve recently been pointed out that I am no longer insurable for health and life. Obviously they consider I have a long life span ahead! I haven’t given up on that myself.

I do my best not to judge other people and I’d like to suggest that people who are quick to judge or try to make me feel bad for finally owning my (second hand) dream car should have a close look in the mirror. I hope they never find themselves in a similar situation to me.