I feel sick and sad this morning

Footnote to my story in November called “Why don’t auckland hospitals work smarter rather than harder.” and the previous one The Hospital is the best place to be when you are sick, or is it?

My friend passed away this morning after an agonising battle with cancer. One has to wonder how much easier it would have been for her if she had received the treatment she was entitled to at the times she was turned away due to strikes and staff shortages. I’m sure she would still be with us today if she was able to receive the treatments and surgeries she was scheduled for.

Her husband is one of those nice old school Kiwi guys who listens to what he is told and didn’t want to rock the boat. He refused to fight through the management or the media to get the treatment his wife needed because he felt that was not the way you behave. Now he has lost his wife and soul mate too soon. We had to respect his right to be true to himself, but I’m not sure we have to accept the system that put him in that position.

My advice, if you are in a situation like that, where lives can be saved or prolonged and the bureaucratic penguins and the system is holding stolidly fast to this is where the line starts and if you’re not there anymore when you get to the end of the line, will the next patient shuffle forward, make a noise like someone’s life depends on it, especially if it does. People who go to the media miraculously get the treatment they need and sometimes before its too late.
We Kiwis need to stop being PC and accepting the bs that comes from our health industry. Note its not the wonderful hospital staff, they are put in an invidious position by the administrators, by the beurocrats and by the politicians who sleep sound at night and whose close ones are probably not getting turned away because “a registrar is off sick and the shift couldn’t run”. They are the ones who have to lie to the patients and their families when cost cutting measures, old fashioned systems full of lost paper files and ancient systems, and cost cutting means many people don’t get their surgeries, live or die in pain.

This person’s story is over. We won’t be going to the media or fighting because it is not what her husbands wanted. I respect that and much as it burns me, I will not add to his grief or risk creating feelings of guilt to him to make matters worse. He came from a generation who said yes sir, I know you are doing your best and genuinely trusted that. She may still have died, in fact probably would have, but she might have had a few more years and she certainly wouldn’t have suffered the degrees of agony of that she did over the last 4 months. We don’t do that to animals.

If you find yourself in a situation like this, make a noise, get your loved ones help, let the media know and as a country we have to get our government and administrators to invest in the new technologies that in the long run will cost less and save more lives.

Why don’t Auckland Hospitals Work Smarter Instead of Harder

 

 

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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?

Canteen’s Bandanna Week

When I was 8, my best mate died of leukemia, also aged 8. It was hard to comprehend, he had been sick for a long time and his family were very religious and somehow managed to cope. Since then another good friend died aged 20, just when life was going really well for her. Her partner who was totally devoted to her was obviously devastated and spending time with them at home and in hospital during her chemo visits was very difficult. She kept up a very brave face, but it was obvious that she was struggling with fear, dissapointment, frustration, why me, nausea, hair loss, energy loss, anguish for her partner and her family, I could keep going, but you get the picture.

New Zealand is highly regarded when it comes to cancer. When my late grandmother came to New Zealand on holiday, she had a collostomy bag, she had one kidney and had spent a year in hospital with over 50 operations. New Zealand was one of the few countries her doctors were confident about her visiting because of the reputation of care here.

We pay taxes for health care and some of it goes to research, but there are many more services that are essential, and today I have a Canteen bandanna around my neck as a tiny contribution of recognition to some of the services that Canteen facilitates.

One of the most important ones in my book is support. There is noone better to help a young cancer sufferer than someone who has been through it and uderstands what they are experiencing and going through. Noone else can really empathise.

According to a statement on Infonews there are currently 12,500 young people up to the age of 24 living with cancer or a sibling and this grows by hundreds each year.

The $4 donation I gave seems pitiful, but if 4,000,000 of us do it, it might be a different story. There are other opportunities. There are a number of bandannas on Trade Me signed by celebrities. There was supposed to be one signed by Elle McPherson, but I couldn’t find out, so I’ve put a bid on one signed by Donald Trump.

Anyway, Canteen does an awesome job and I hope they raise loads of money for this important cause. Let’s make these young people’s lives mean something and give them a lending hand.

I’m also planning one or more songs about cancer, but you’ll have to keep an eye on my Songwriting blog in the coming weeks to learn more about that.

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:)

And When I Die……………

Lately there have been a number of ads and programs on TV showing video’s that people made for their children and families to watch after they die of cancer. It’s an opportunity to leave messages for the future and to tell people those last important things like how proud they are and how much they love their family.

It got me to thinking about funeral music. No I’m not being morbid, but I have been to funerals where people play music, perhaps recommended by the funeral director, or what other people think would be nice.

When I die, I would like to have the last say and play the music that reflects who I am and what I like. I’m thinking a little Carlos Santana, like Samba Pa Ti which is one of my ultimate favourites, I love the what I call romantic melodies that he plays with the long full bended notes. There’s another one off the Album Caravanserai which is similar, so that’ll be on the list. I can’t remember the tune so I’ll have to dig it out.

Then there is another one that I love from Phil Guy called Professor’s Boogie. I don’t know whether it was written by Professor Eddie Lusk or a collaboration, but it has given me many happy listens. I had the privilege of meeting Phil, who is Buddy Guy’s brother at Koko Taylor’s Club in Chicago several years ago and I love his music. It was an honour to meet him and I treasure my autographed CD.

Another song that will be on my list is I Can’t Quit You Babe, but actually not Willie Dixon’s version but Since I’ve Been Loving You from Led Zeppelin lll, which was one of my favourite albums.

Finally I’m going to write my own song which I will leave behind as a message to those that I will leave behind, telling them how much I love them and how proud I am of them. It will be my final parting gift that I can perform for them, so I will be at that final farewell. I haven’t started writing it so I better not get hit by a bus or anything. Maybe I’ll be able to include a few full long bendy notes of my own along with my last words. Now don’t get me wrong, I intend to be around for a long, long time and write many more songs, but wouldn’t it be great to be able to leave something special for people to remember? It won’t be something sad, it will be a thank-you for all the opportunities I’ve had and the love I’ve shared.

So I had better start writing it soon so I can put aside the tracks that I will play for the very last time. Have you thought about what you would like to have played at your final celebration, your funeral?

Second Time Around

Last night one of my girls was on a dating site looking for a possible partner for one of my friends who’s husband died after playing a game of football. He was one of the good guys who died young.

So she is one of a huge number of people who is looking for love, 2nd time around. Most people have different reasons, the most common being a marriage break up. On this particular site there were over 10,000 men online looking for ……….. well various things I guess, but ultimately for a new ‘life partner’. I put that in inverted comma’s because it is no longer the norm for people to have one life partner even though most of us contend that we are monogamous, I think it has come to mean one partner at a time.

In my youth it was already becoming commonplace for marriages to break up and for people to start again and of course there are the elderly where typically the woman has a much longer life expectancy than the man, so naturally is going to want some new male companionship in her dotage.

Back in the day when life was simple, you stayed on the farm or at your job for 40 years and earned a gold watch, life was more about survival and getting enough money to be comfortable. The pace of the world was relatively slow and people were comfortable with that. Relationships were ‘until death do us part’.

Today life is fast, the world has grown smaller and there are opportunities to taste and try many things. Our standard of living is far higher leaving us comparatively with greater disposable incomes, and the world is our oyster. This opens us up to many more temptations and we go through many cycles of life. We move to new towns, cities or countries, we experience new cultures, we have many jobs, our social groups expand and for a much larger percentage of people, relationships fade away. They die for lots of reasons, but I think the fast pace of life in the 20th and 21st centuries is a major factor. As they say, change is the only constant.

Last year, one of the schools I went to, Auckland Alternative School had a school reunion. One of my old school mates who now lives in Australia was asking if his old girlfriend was coming and although he is in a relationship, that was the factor that would determine whether he was going to come, no one knew what had happened to her and neither of them came. The reunion was advertised on Old Friends which is also a site well known for people looking to find the old school girl or boyfriend.

Of those that did attend the reunion, only a few of us were still in long time relationships, most had split up and were single again or in new relationships. Whilst I have been in a long term relationship, married for many years, I had previously come from a 7 year relationship and I am my wife’s second husband. So I fit the mold as well.

Anyway, next month I am attending Song Summit Sydney S3 which is the first event of its kind for song writers in Australasia. I have applied to perform to a panel of songwriters, publishers, managers, broadcasters, producers and A & R professionals, which the blurb says is ‘not for the faint hearted’. Like American Idol in a way, but hopefully more constructive.

I’ll be performing my new song Old Flame, which to bring this blog to it’s conclusion was motivated by seeing my old school mate and so many other people, looking for that old girl or boyfriend that they lost track of, that could have been ‘the one’. When I look at websites like Old Friends and track the number of people who want a 2nd chance, I am amazed at how many there are. I hope my song goes down well and that they like it’s construction, because I think it is very topical and many will relate to it, which in my book is a key criteria for a good song.

If you’d like to hear it, check it out on my MySpace page and let me know what you think.

Finally the staff in the Waitemama Health Board speak out

As a footnote on my story yesterday, in this morning’s New Zealand Herald, senior doctors have finally spoken out, to the ‘disappointment’ of the Waitemata Health Board. I’ll bet they were disappointed. The Health Board say they have been working on it as fast as they can. But didn’t they close a whole floor of the hospital because they had insufficient staff? Now they are going to open a new ward.

At least it is now out in the open and we won’t hear any more stories of “It’s not usually this bad”, because we all know it is. The sad thing is that for the next few weeks at least, the newspapers, the woman’s magazines, TV and more are going to be full of sad stories about people who died because they couldn’t get their chemo or radiation treatments in time and now their cancers are invasive. We’ll hear about elderly people who didn’t make their 50th wedding anniversary because they didn’t get satisfactory care in time. I’ll put money on it that the Auckland and especially local nwespapers are going to be full of letters to the editor and many will be followed up as sad, sad stories.

The board will say “It’s not our fault, the government wouldn’t give us enough money.” The senior doctors, registrars and nurses will all be saying, “We told you over and over again, but all you cared about was budgets and efficiency.”

I have no problem with hospitals being run as a business, with controlled budgets and business plans, but let’s never forget what they are there for.

I do have one question though, and I wish my WordPress had a poll function, but then I doubt they would answer this question. Either way, here it is. To those people who work in our public hospitals. If you need surgery or have a serious medical condition, do you go to your public hospital, or do you go private? Why?

Sadly I am confident that for the majority, I already know the answer.

Again to those of you who work as staff in the hospitals, thank you so much for staying and not going oversees where you can earn at least twice as much money and in many cases function in a technological environment where most patients get their own drugs and not someone elses, where their files about their condition and allergies are available on demand and where far fewer people needlessly lose their lives. It must be very tempting sometimes to long for single shifts and an organisation that cares as much for their patients as they for saving money.

Now let the stories begin. I don’t want to sound cynical, at least any more than I already am, but it is election year this year isn’t it? There had better be some funds coming up for Auckland hospitals because health care is going to become an election issue.