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.
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?
So 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”.
Then 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.
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.
So 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.
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.
- 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:
- 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.
- 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.
- 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.
- 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!
- 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.
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?