How to Reduce the Number of Your People Dying of Cancer in New Zealand Even Though You are not a Doctor

Yesterday we flew to Wellington and drove over the windy Rimutakas for a funeral of a friend and family member who died of cancer on Monday. It all started with a lump in her breast, it ended with tumors in her spine and brain. A prognosis of months became days.

One of the people who spoke lost her husband late last year to cancer, she spoke with raw emotion of how life changing and devastating it still is to her. Several other people there had experience and have lost people to cancer or who are battling it. Five of the speakers shared the following words, driven by raw emotion “Fuck Cancer”. I think that’s the first time I have ever sworn in a blog and I don’t apologise.

I invite a comment from each of you who don’t know someone who has lost the fight with cancer or is battling it right now. Tell me that’s you and I will be thrilled for you. 1 in 3 Kiwis will get cancer. It doesn’t have to kill a third of our population. If you were told you had a 1 in 3 chance of winning lotto, would you go and buy a ticket?

I also spoke briefly about my journey. I’m one of the lucky ones because I’m in remission and she was one of the ones who was looking out for me and giving me moral support. It’s people like her (and another Shelley who has chemo every 3 weeks and had to sell her Auckland home to live in the country to cover the difference between what her insurer was paying and what she had to find to cover the cost of her teatment, that helped me get to remission.

In one of my songs for The Cancer Diaries EP, I wrote, “Isn’t it ironic, that the people you use as a tonic, are worse of than you?”

Our 2018 singlets have just arrived. The 18 for 2018 is made up of the names of people living and sadly passed away who we are walking or running for on 10-11 March 2018. The day after my birthday.

She was also active on my Facebook Page Musicians with Cancer and other Maladies. She was also a great supporter of Relay For Life which as you may know, we are walking for 18 hours on the 10th and 11th of March at the Millenium Institute of Sport on the North Shore.

We talk about cancer being about OLD people. Many people say it is the Baby Boomers who spent too much time in the sun, smoking and covering their bodies in baby oil. But when I look around, I see a wide mix of people. Toddlers with Leukemia, teenagers with bowel cancer, people like myself and my friends who are (or were still working and expecting to for at least another 10 years. How about the younger people who have lived on a diet of processed foods, preservatives and the many other flavour enhancers documented on the packaging. Of course you don’t see those on the packaging of the fast food many people live on. Would you eat your favorite fast food if the packaging looked like the packaging on a pack of cigarettes? Imagine if they had pictures of obese people, diabetics and those with heart problems caused by eating processed food, along with ALL of the ingredients.

At the wake, after the funeral yesterday everyone had a cancer story and a common thread of discussion was about getting tested before you have symptoms and the time to get tested was typically agreed for people with no symptoms of around 30-40 years of age.

We talked about diet and lifestyle.Those are things that we have control to do something about. Getting tested early is no doubt what saved my life. I had no symptoms that I was aware of and it was a simple blood test that led to my diagnosis.

My friend, Colleague and supporter Lee, who continues to battle her ‘terminal’ diagnosis contacted me  told me I needed to watch a Netflix documentary called The C Word, starring Morgan Freeman. She said that she felt if she had watched it a year ago, she would still be working and not facing a death sentence. I imagine if you followed the learnings from the move and never got cancer.

I watched the movie with her recommendation. If you don’t have Netflix, you might find it on YouTube or elsewhere. If you were told you have a 1 on 3 likelihood of getting cancer, would you do anything different? Well I’ve told you now, those are your odds. What if helping out the Cancer Society with a small donation would help speed up some exciting world leading cancer research as well as help people who have been already been diagnosed with everything from free counselling, free support groups and even somewhere to stay when you have to stop work and travel away from home for treatment, also for free, which is a big deal if you can’t work and get paid during that time.

It’s taken me a long time to come to grips with the fact that there are some key things I have needed to change in my life. The key ones are, more fresh foods of more colours, more exercise, even when it’s hard to even get your body out of bed, attitude particularly avoiding bad stress (stress that is negative in nature and people who bring it) and having positive things to look forward to. I’m feeling really good now that I’m in remission. That wasn’t the case 2 years ago, but I’m a fighter and a survivor.

These days I focus on these things, but not to the level I need to. I still let things and people get to me, but I focus on what I can control. Right now I’m focused on having a first flying lesson next week and Relay For Life on 10/11 March (which comes with a need for donations, which is where I need your help.) Buddy can you spare a dime? I am really struggling to reach my target this year and all I need is some of my friends and readers to help me with $5 by going here. What can you get for $5? You might be able to save a life. Seriously, even by just discussing Relay and getting tested for cancer with friends you could make a difference.

Twenty people, that’s right 20 PEOPLE got tested because I raised the topic and even if some of them had been thinking about it, I helped tipped them over the edge. What’s even more cool is that not one of them has cancer. Wouldn’t you like to know you don’t have cancer?

Here’s a statistic for you. In the USA, around 38% of people WILL get cancer. How do you like those odds? Here are a few more stats from Medicines in New Zealand:

1. New Zealand’s Cancer Rates are over 62% higher than the world average.
2. New Zealand’s mortality rate exceeds Australia’s average by 8%.
3. While survival is improving, New Zealand’s survival rates are less than Australia and US.
4. Compared to Australia, New Zealand has much higher rates of avoidable cancer deaths.
5. Out of 13 countries, New Zealand has the lowest ranking for access to cancer medicines
6. New Zealand only funds 14% of highly effective available medicines for the 8 most prevalent cancer types.

This view on the flight home (no filters used)  last night was a fitting tribute to our friend Shelley who didn’t make it. It reminded me of the late Stevie Ray Vaughan singing The Sky is Crying.

While you are thinking about whether a slight lifestyle change is worth considering, or that like the 60% of people who won’t get cancer (by today;s stats) it won’t happen to you or yours, how about helping out those of us who will be spending 18 hours walking around the track at Millenium Institute on 10th and 11th of March by donating $5 to our team. I need 241 more donations. If all of you who read my blogs made that small donation, we could blitz it together. It’s easy and it’s tax deductible. Please do it today. It will make a difference.

If your loved one isn’t already on our shirts, we will be very happy to walk in their honor if you give me their names.  We are also open for more team members or even just come and walk a lap with us. We will remember them.

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Your Ashes on Record

I’ve lost friends and a family member recently which has led me to think about what I would want to do with my ashes. We don’t often face our mortality and a number of topics have come up recently. For example, what happens to your social networking and web presence when you die. One solution I discussed in a previous blog was Legacy Locker, who can provide access  to your records to anyone you want to access them. Do think about the consequences of this though, especially who you provide access to.

Another topic that I have pondered on is my funeral. No I’m not planning to die anytime soon. Hopefully I have at least another 40 years on this planet. But I would like to have control over at the very least, the music that is played. I have a few tracks in mind, like Santana’s Samba Pa Ti, which I love. I’d also like to have at least one of my own songs that I have recorded, but I am hoping that my best work is yet to come, so that may change.

I definitely plan to be cremated. I hate the idea of worms crawling through my bones. So what to do with my ashes. Well I think I’ve found the perfect solution. A company called Add Vinyly will press your ashes into 30 records containing 24 minutes of any audio content you want. Now you can not only have control of what’s played at your funeral, but you can be a physical part of the performance and any of your friends who want to can have a piece of you so to speak.

What do you reckon?

And When I Die

No I’m not talking about my blog, but it is relevant to the podfade. There is so much I want to write about. How thrilled I was about The Hyperfactory achieving their harvest plan and that Derek and Geoffrey are planning on coming back to New Zealand to share their knowledge and help others follow in their successful path. As you know location based services and mobile marketing are amongst my passions.

I would also have liked to talk about the Rex which set foot in New Zealand, just as I was bemoaning the difficulty of Kiwi innovators to capitalise on their ability; again an area that has been of great interest to me. Then of course there is the tentative success of the oil cap on the BP oil well. I have pondered much on Oceanic Dead Zones, whilst the BP accident helps extend them.

Two months ago I was faced with a family crisis. My father in law was told that he had somewhere between 3 days and 2 weeks to live. Life as I know it, pretty much stopped. Our close family was in shock, even though we knew it would come eventually. Before you offer condolences, he is still alive:)

Having developed a taste for tobacco while serving in the air force, 20 years ago he had a laryngectomy as a result of throat cancer. He didn’t take it lying down. He learned to talk again and picked his life up. He became involved with the Lost Chord Club and eventually became President, counselling others through their throat cancer journey. He also visited schools and let children look into his stoma, seeing that he had to breath through a hole in his neck, caused through smoking.

So for most of the last 20 years he was in remission, then the cancer returned and as often is the case 2nd time around, it was not going to be possible to treat it.

So my life and that of my family has changed dramatically for a while and  many of things I have been wanting to do, I haven’t had time for. We spend as much time as we can with him, because once it is over it is totally over.

It strikes me that whilst we all know that from the moment we are born, we can be certain of one thing (I have blogged about people (such as some from Singularity University) are doing everything they can to avoid it) it appears that death is a given for each of us.

So we have been assisting with respite care, trying to help him maintain his dignity as he becomes helpless, and his confusion as to both why he is still alive and what will become of him when he dies. Will there be a place for him in heaven? Is there a heaven? These things worry him. He has never been a religious person, although he was a church choir boy many years back. He worries about his wife and what will become of her after he passes on.

We all worry about each other, how each is going to cope with the end. I wonder how the women of the family cope now, they look after him around 18 hours a day, partly because they want to and partly because there are not many people who understand how to look after someone with a hole in their neck, who can’t talk. If he had a shower and water got into his stoma, he would drown. If his neck valve leaks (and this happens from time to time) when he eats a few spoonfuls of his porridge, the food can leak into his lungs.

Anyway, things aren’t normal right now and no one can tell him what is next tomorrow, let alone for eternity. Two months ago he was told maximum 2 weeks. Two weeks ago we were told “a few days”.  It took us a while to understand what he meant every time he woke up and asked “What’s going on?” We thought he meant Who’s here? or Is someone going to take me to the toilet? But eventually we figured out that he is asking, “Why am I still alive?”

So it seemed appropriate as I wait for my finger nails to toughen up again (for guitar) after washing the bathroom and shower, so I can do my latest Berklee Music assignment and then head back to the rest home after a work out at the gym (down to one a week because I go to the rest home straight from work) that today’s blog be about something more basic than singularity and the latest problems with iPhone 4. Once you break it down, we are just an essence in a body that peaks somewhere between late teens and mid twenties and then starts to die.

Sometimes all that matters is the people that are close to you and can give you comfort, and you them. When you break it down, we are beings in flesh and blood in a temporary home.

Legacy Locker passes all your web accounts on to your beneficiary

I read a story in this morning’s NZ Herald which doesn’t appear to be available online. It was about a new web site which people can use to pass on all their passwords and account details for everything they do on the web from your online banking to all your web sites, social networking pages etc.

This was something I hadn’t considered before from my own perspective, or from those I leave behind. There are of course practical issues, such as having access to my online banking accounts but also my blogs, the sites where I post my music, such as MySpace and Music Forte, and my social networking sites such as LinkedIn and Facebook.

The practical things are important because I would want to ensure that my beneficiaries have access to all my assets, but there are also the emotional considerations. Unless someone does something about it, my blogs and my social networking pages will remain forever. Personally I think it would be nice to leave a digital footprint behind, especially for my music, but also where people can remember me, almost like a legacy, where my own perspectives can be seen, rather than other people’s interpretations of them.

The NZ Herald story, which came from Telegraph Group Ltd, (which I also couldn’t find online) raised issues of the pain that it might cause to people left behind, when their loved ones pass away, seeing all their posts, photos and other net based activities, like footprints in the sand that people can see in time to come. It could be very painful.

On the other hand, I would love to be able to access information left by my forefathers. I have travel diaries from my grandparents and a small number of photos, but mostly their information is lost forever, or scattered, not shared, amongst my many cousins, uncles and aunts.

So the Legacy Locker service allows you to ensure that people left behind have access to all your accounts and can follow through on your wishes after you pass on. I don’t know how they find out that you have died, their must be a mechanism for that, but you have the ability to write an email that will be delivered to your beneficiaries after your death, so that they have access to all the information you want them to find.

It looks like they have all the systems you need including bank level security, to ensure that your data is safe. Check them out here.

They make a good point on their site that online assets have value. There may be areas of financial value, but there is also the intrinsic value of having access to photos that you may not have ever printed, music, diaries / blogs and traces of all your relationships, business, family and friends.

The pricing is also very reasonable, $30 a year, a flat fee of $300 and you can also have a free trial. I’m not so sure about the free trial other than being able to evaluate how it all works, but it is something I would probably do if I was going to sign up. Will I sign up, not at the moment, but maybe some time in the future, who knows?

The Right Track Programme

This morning I read a story in The Aucklander about The Right Track programme which is an intense program for first time motoring offenders to get them to think twice in the future about boy racing, drinking and driving and other motoring activities that are dangerous to themselves and innocent bystanders.

According to the police this programme is having good results, but it seems that funding from Manukau City Council is going to end. They said that it was never a long term exercise.

Amongst other things members of the programme visit the Otara Spinal Unit and meet survivors who now need a wheelchair for their mobility. Funeral Directors talk to them about how they have to pick up body parts after an accident and try to put them together for funeral viewing.

It’s all about having the ambulance at the top of the cliff according to John Finch who developed the programme which is a world first.

My father in law has had throat cancer and as a consequence had a laryngectomy. In conjunction with the NZ Cancer Society he visited many primary schools and told his story. He let the children have a look at the whole in his throat and see how he can talk. He let them ask questions and gave them honest answers. It’s interesting how onto it kids are. He has dozens of letters from students saying that they will never ever smoke. I would say he has probably saved at least one or two lives, which probably represents a six figure sum at least to our health system.

An ambulance at the top of the cliff has to be significantly greater than the cost of mopping people of the road after a needless accident, but unless funding is found, this excellent and selfless service will disappear.

I wrote a song about situations that kids find themselves. It’s called One More Time Around the Block and you can hear it at Music Forte.

It thundered down the road like a young boy racers dream

The Rockford Fosgate sub beat like a life support machine

They never saw what hit them on the wrong side of the bend

They didn’t have an inkling that their lives were going to end.

The mourners stood in silence dressed in dark clothes, mostly black

A mother screamed her lungs out, cried “I want my baby back”

Their friends stood round in circles, still not coping from the shock

They said they be five minutes, one more time around the block.

They were best of friends like they were tied at the seam

They knew what each was thinking and they shared the same big dreams

They were just young men in the prime of their life

Their futures lay before them, empty pages still to write.

But now those days are over and their lives have been snuffed out

The sub’s no longer thumping and their hearts have lost their clout

If only they had listened, if only they had stopped

They said they’d be five minutes one more time arouind the clock.

And now the music’s playing and the mourners begin to pray

They sing the Lord’s Prayer and ask themselves

Why did it end this way?

The V8’s sound like thunder, can’t you hear the engine’s roar?

Car horns sound a last salute with feat flat to the floor

Wish we could have changed the outcome, wish we could have stopped the clock

They said they’d be five minutes, one more time around the clock

They said the’d be five minutes, one more time around the clock.

While this blog is starting to get a good following, I would love to get more readers and encouraging me to keep writing. If you feel that my blog is interesting I would be very grateful if you would vote for me in the category of best blog at the NetGuide Web Awards. Note that the form starts each site with www whereas my blog doesn’t and is of course https://luigicappel.wordpress.com.

Thanks so much for your support:)