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.

 

A Cancer Meltdown


So a couple of weeks ago I felt like things were going OK. I had my cool car and whilst I was feeling really fatigued, I was coping. Then a pile of little things got the better of me. I was late with my tax (which I hate doing, because I normally do that at the end of the calendar year, when I was doing 8 weeks of radiation therapy and was too tired any other time. I’m between test results, so anxious about what the next result will be. My arm is really sore after taking the splint off my wrist from a thumb strain (which impacts on everything from using a mouse to playing guitar. Super busy at work and a number of other things, nothing that would be beyond the norm for any of us in isolation.

20160503_161554.jpgI had words with my wife, something that is very rare and after she left the music room, I lost the plot. I picked up my office chair and flung it at the floor breaking the base and ripping the carpet.

This was not good for our relationship and the following night I was away on business, which was probably s good thing to allow us to both cool down. It was totally on me and something I haven’t done since I was a teenager. I do not have an anger problem, it’s just one of the many emotions that you go through with grief and with cancer. Some people cry a lot (I only get emotional like that when giving speeches at weddings or when I’m watching an awesome concert). I might get slightly bloodshot in the eye when I’m passionate about something, but again that is when I’m happy.

So the following night I found myself in a hotel in Wellington after a 4:20AM start and a long working day. I sat in my hotel room looking out the window and pondering the meaning of life from about 5-7:00, went to bed. No dinner, no TV, a few SMS’s with my wife and slept for about 11 hours.

Bottom line, I really needed to let off steam. But I wasn’t finished and this is the good part. Right through summer when I usually write and play a lot of music, play a few gigs,  I couldn’t play, I had lost my mojo. Well after this exercise I got it back and over the last couple of weeks have written the backbone of a new song, which was the catharsis I needed.

Here’s what I’ve got  so far. It’s a country song, I really like country as a genre for telling stories. I hope to fine tune it enough over the next few week to start recording it, because I like the song as a song, not just a form of letting off steam.

If I Could Turn The Tables

Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

Verse 2

If I could turn the tables I’d unsay the words that I just said

I’d turn down the volume of the voices that keep crashing through my head

Sometimes I feel like I’m OK, then the doubts start to shiver down my back

I’ve got to climb out of this hole and find my way back.

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Verse 3

I’ve got a lot to live for and each day I add on to my bucket list

I have great friends and family, there are special dates that I don’t want to miss

Sometimes I just want to cry, sometimes I wonder what its like to die

Then I think of those I’d leave behind and find my way back

Bridge

Every day’s a gift

Every day’s a steal

You can’t be the driver

Unless you take the wheel

Take the wheel

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Repeat Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

-I’ll share a link once I’ve recorded it. It’s great to be back in writing mode and I hope I stay there. I’ve missed writing songs (other than my Pi project). I feel so much better having transferred my emotions into music.

I’ve been wanting to write songs about cancer to share, which might also help other people, be they the patients or friends and supporters. I have one other that I wrote but haven’t recorded yet, it’s more of a soul/reggae number which I wrote about losing my father in-law (also to cancer), but I thought I’d like to do a few covering different aspects.

Anyway, that’s me. Now I have to transcribe the song and publish it. If you’re still here, thanks for coming  on my journey with me.

 

Update and coping with cancer


It’s been a while since I last posted on this topic and I know some of you are more comfortable reading this than asking how I’m doing.

In a nutshell, I’m improving. My last test a couple of weeks ago was the first time my PSA levels have come down, although not as low as we need them to be. In 10 weeks I’ll have another test and we’ll hopefully see that it is trending down, which will mean tests every 3 months and I’ll be on the mend.

In the meantime I still suffer from fatigue 24:7 but not as bad as it was and when I’m busy and focused on doing things, I don’t notice it. But that also means that it is really easy to overdo it and if I have a really busy day at work, or even just at home, I pay for it.

I now have some nights when I don’t fall asleep at 7:30 or earlier, but it is still more common than not that my wife wakes me up somewhere between 8 and 9 to tell me to go to bed and off I trot, feeling ripped off both because I’m missing out on my time and our time and I feel bad about leaving her on her own each evening, while I trot off to sleep. It’s also frustrating that you feel tired all day whether you had 5 hours sleep or 12 hours sleep.

Anyway, what I’m focusing on is looking forward to things and trying to live in the moment. We have spent much of our lives looking to pay off our mortgage and reducing debt, rather than living life for today. Cancer makes you want to make sure you have taken care of your loved ones financially, but it also makes the bucket list more important. One of the things on my bucket list that I was confident I would never have is the new toy we bought.

carI have always loved Corvettes and now I have one and I love it. Hopefully my wife and I will have fun doing road trips and make lots of new memories. Living in the now isn’t easy and it is important to be financially secure if you can. It is also important to have fun and enjoy life, which isn’t easy when sometimes life feels like crap. It doesn’t have to be a cool car, it can be just looking forward to going out for lunch or catching up with a friend you haven’t seen for a while. It is important to have a focus that takes your mind off the fact that you have cancer. Doing things that make you happy creates good chemical reactions in your body and if you are creating endorphin’s that has to help your immune system.

I want to share a poem with you that reflects a bit of the feeling I had about living. It was written by Alistair Morrison and I hope I’m not breaking any copyright laws by sharing it.

Such a Good Boy

He never said ‘Die’ to the living

He never said ‘Scat’ to a cat.

He never said ‘Boo to a Kangaroo.

He never did this or that.

He always kept clear of propellers

Never spoke to the man at the wheel

He always said ‘thanks’ to people in banks

And always took food with his meal.

He never took umbrage, or opium

Or ran round the rugged rocks

He never missed school, or acted the fool

And always wore woolen socks.

He never sat on a tuffet

Or pulled out a plumb with his thumb

And never in churches left ladies in lurches

Or opened the OP rum.

He never pinched little girls bottoms

Or peered down te front of their necks

Considered it folly to covet a dolly

Or think of the opposite sex.

He never did anything nasty

He never got stinking or cried

Unmarred by one speckle, a permanent Jeckyll

With never a shadow of Hyde.

He never called anyone ‘Drongo’

Or even ate peas with a knife.

He never crossed swords with the overlords

Such a good boy all o his life.

When he finally died and was buried

His loving ones tried to mourn

They put at his head a tablet which read

“Here he lies, but why was he born”.

 

 

Returning Veterans in noncombat car crashes (Read Time 1:33)


Motor vehicle crashes are part of every day life and I have an interest in what causes them and how to reduce them. I’ve been listening to a podcast by Dave Wallace, the Traffic Safety Guy, called Highway to Safety.

From a Bradley to a Civy Street

From a Bradley to a Civy Street

Something I have heard of previously but isn’t front of mind in New Zealand because we are a small country with a small defense force, is what happens when you take someone who has spent 18 months in a combat zone, where they literally have to make split second decisions, and when they come home they pop into the family car to go out for a drive.

When we learn to drive, we learn to look out for animals, for kids running our from behind a bus or an SUV or for drivers of other vehicles driving their cars in an unusual manner, all of which are common day occurrences.

Now take hardened, combat ready veterans who have seen innocent looking situations turn into death traps, where sub second muscle memory instinctive and instant actions can save lives. That family pet lying on the side of the road at home could be a sleeping pet, but in the combat zone, could be a booby trap.

According to a 2009 Army study, quoted in the podcast, Iraq and Afghanistan veterans are 75% more likely to die in car crashes than the general population. In fact from 1999 through 2012, 4,423 active military personnel died in non combative crashes.

I can’t imagine what it must be like re-integrating between or after terms of duty, but it makes total sense that there is a problem and it is being addressed. A Home Safe, Drive Safe campaign is being adopted by the various sectors of defense in training offered to service people when they return home.

As you will hear in the brief PSA video by Nascar driver Richard Petty, more returned veterans die in their first year back home in motor vehicle crashes than for any other reason.

This is something I have never considered. We hear about all sorts of adjustments people have to make, but next time I hear of a returned soldier who has had a serious accident as a consequence of responding to a situation that would for most of us be a non event, I’ll be wondering if the have had that part of the debrief and are conscious that they are not in a war zone.

So from someone who has never been in that situation, but enjoys living in a free democratic country, I say “Thank you for your service, we want you to stay alive, safe and well.

If you have a story about this topic, I would welcome it if you would like to share an experience or comment.