Give me Strength on my Cancer Journey


20160319_205646One of my friends kindly donated to my Relay For Life  event this morning which runs on the 25th and 26th of March and he made a comment to me which was “Stay Strong”.
 
I wanted to share my reply to him with you. My beautiful granddaughter gave me this rock to put a smile on my face.
 
I literally carry it in my pocket every day to represent strength and when I’m tired or having a tough day (which is pretty much when I’m tired which is most days) I give it a squeeze and feel the strength and solidity of this empathetic gift.

 
It is like a taonga to me. Maybe a little of her tiny bit of her Maori ancestry will rub off it into me; as she can trace her lineage to the canoe Mataatua. It’s not a magic bullet, but I feel love, hope and strength in this little rock, just as I feel it from my friends and family who have donated to my Relay For Life campaign and in many other ways.
 
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My granddaughter at one of our first Relay’s. The bag which she decorated contains an LED candle representing hope and remembering loved ones who had or have cancer.

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.

I get messages like this every day.

I don’t want to name names, but you know who you are, there are a number of very close friends and a colleague who are way worse off than I am with their battles with cancer and ironically they are right there supporting me. I hope that I have been able to help them a little as well.
I’d like to finish with a little story and I know I get long winded, sorry:) I had two days this week when I really shouldn’t have gone to work, but I had really important meetings. Anyway on Friday I decided to do a little meditation on HeadSpace. I’m not good at meditation and I’m on day 3 of a 10 day program I started a couple of months ago.
So anyway, I go down to the carpark at 2PM for a quick 10 minutes of meditation. About 25 minutes later I get woken up by a very concerned colleague tapping on my window who saw me sitting in my car with my eyes closed and wanted to check if I was OK. Again, that’s another example of the support that is so important and I really appreciate it. As to HeadSpace, the first 10 days are free and you don’t have to use it every day. I like it and understand why so many famous people recommend it. If it works for me, it will work for just about anyone.
So thanks to those of you who are giving me strength with donations to Relay, sending me positive messages or simply asking how I’m doing. For others who are at various stages of your fight with cancer, I am thinking of you, ready to help in any way I can and as I walk around and around the track at the Millennium Centre, your names will be on my lips, in my mind and in some cases on my back on the awesome singlets Empire Promotions have had made for Team Early Birds. Note the number 17 is made up of the names of all the people we are walking for. 2017-shirt

Je Suis Fatigue – Day 25 of Radiation Therapy


This was a year ago and I’m still tired and getting ready for the next Relay For Life on 25th and 26th of March 2017. If you can spare a fiver, it would be much appreciated. I’ve only got a third of my goal so far. It’s tax deductible and 100% goes to cancer research. Click here for more info.

I haven’t posted about my cancer for a few days, partly because it would be a boring read and partly because I am fatigued. I knew that the radiation would make me tired, but this is something different and I’ve struggled to find the words to define it.

Fortunately the Cancer Society has information online that helps. It describes it as an overwhelming tiredness (physical and emotional) not relieved by rest or sleep. That pretty much encapsulates how I feel at present

It also says that while the reason is unknown, it may be as the cancer cells die they release waste products. Your liver and kidneys have to work harder to get rid of these toxins, using valuable energy. I like that description because I can then take it that these tumors are being killed and I am beating the cancer.

It also says that the fatigue usually lasts 3-4 weeks after treatment but can continue to last for several months. I’m hoping that’s not the case given that I’m back at work on Monday.

alex harry wedding car

The Groom’s Bridal Car

So a couple of days ago I went to an awesome wedding in Tawharanui, a stunning location north of Auckland. I had done some research for a short speech I wanted to give. A little humor and a lot of love for the couple, the bride having been part of our extended family since she was 2 years old.

I couldn’t do it, emotionally I didn’t feel capable of doing something that I am skilled at, that I wanted to do, that I have done hundreds of times at conferences, training courses, weddings, funerals, birthdays and other events all over the world and I couldn’t do it in a place where I was surrounded by family and friends.

It was a wonderful wedding, but I was so fatigued I could barely hold a conversation. The following day, yesterday, was worse. Because we drove home after the wedding, I had arranged to have my radiation treatment moved from 07:30 to 13:30.

That was a mistake, it’s hard enough having a moderately full bladder and empty bowel first thing in the morning, but doing that early in the afternoon, plus a delay before I got my turn was a nightmare. My bladder was fit to bursting before I was called up, so I had to void a little and was about to get rid of even more a second time when they finally called my name.

I lay on the table praying that I would be able to last the amount of time it takes to get me in the right position, do a CT Scan, make minor adjustments and then start the radiation. It seemed to take forever and I was on the verge of jumping off several times.

The strain and pain of holding it back had me fighting an enormous battle between my dignity and my bladder control and I was looking for a button to call a nurse and call it off, but there wasn’t one.

I wasn’t going to risk getting off the table while the photon beams were radiating and risk damaging other parts of my body, but the intensity of holding my bladder was enough to give me a massive headache. When they came in to get me off the table I apologized and said “Sorry I have to run.” I meant it literally. I’m glad I still have that control!

Sorry about the detail, I’ve avoided talking about side effects. Let’s just say that going to the bathroom is not the satisfying ritual it used to be, but on this occasion the relief outweighed the negative aspects. I never thought I’d be blogging about going to the toilet, but this process has lowered my inhibitions.

I had a nurses appointment afterwards and he gave me a urine test to take home (given that I had just saved my bladder from bursting) in the unlikely event of infection and recommended I go home to bed. By the time I got to the car, I was busting again! So I went back and did the test and it was as if I hadn’t been before. It was like letting the air out of a fully blown up balloon!

Other notes:

  • Relay For Life rang and asked if I was prepared to do an interview in a local paper about why I am doing the event again. The answer was yes, although I feel that is a lot more public than my blog and social media. But, given that 7 people have been motivated by my story to get tested, that might otherwise have procrastinated and might not have caught the cancer early like I did, if I can help save one person from a serious condition, it’s got to be worthwhile.
  • songMusic. I’ve started reworking a song I wrote for a friend who died of cancer a few years ago and making it more generic. I’ve been waiting for my muse to come back. It’s good to get back into it again.
  • I’m hoping to get some more donations for Relay For Life. It’s a real struggle. I know it is still a couple of month’s away. I’m keen for suggestions from anyone as to how I can encourage people to part with $5. It’s tax deductible so you even get some of it back. If you can find the time, I would so appreciate that gesture. The Cancer Society are a charity, the first people I called for help and advice once I knew I had cancer and they get no funding from Government. We also have room for a few more members on the relay team if you can handle taking turns walking around a track for 24 hours. It really is a fun and moving event.

If you’re still here, thanks for supporting me on this journey. I am feeling a bit better today, hence the almost 1,000 words, but also looking forward to a quiet day inside while the storm rages outside. Wishing you all a wonderful weekend. I’m now going to reword the speech I didn’t give into a letter that I can give to the newly married couple.

On Ray Kurzweil and Thinking


I was reading a current article by Ray Kurzweil in this month’s edition of The Futurist and it got me to thinking a little. Here are a few random synapse connections from me.

He talked about how the digital neocortex will be be much faster than my wet-ware and that the roughly 300 million pattern recognisers in our biological neocortex will allow us to think in the cloud, using billions or trillions of pattern recognisers.  The IQ part of my brain thinks this could be amazing, although I would worry about dendrite overload or glutamic acid over stimulation, which is associated with conditions such as Alzheimer’s. It’s one thing to connect my brain or nervous system to additional memory, but to extend the processing in and out, is something that I think may require a lot of very careful study.

Earlier this week I wrote a blog about a potential future condition, Google Glasses Separation Syndrome. I recently introduced my daughter to the brilliant book, Flowers for Algernon which follows a similar thread. What happens when you expand a person’s capability to the point that it changes their existence and then potentially remove it again.

I noted that Ray perhaps doesn’t like driving very much because he talked about self driving cars alleviating the requirement of humans to perform the ‘chore of driving’. Sorry Ray, I love driving and so do a large percentage of the people I know. I appreciate that you now work for Google and they are pioneering driver-less cars, but I don’t want to live in a city where eventually the law requires hat the ‘network’ takes over my car. Yes there are benefits in road safety etc.  but with systems such as Fleet Management, MobilEye, and the incentives of PAYD Insurance the roads will become safer without requiring us to take our hands off the wheel.

So IBM‘s Watson won Jeopardy, cool. It is an amazing AI and I love that it is now being used to look for cure’s for cancer amongst other things. But if you start thinking about Watson, a digital neocortex and singularity, what about EQ? It’s one thing to be able to identify things, to be able to locate information, to be able to combine apparently disparate bits of data, but how about feelings, intuition, id and ego? These are the things that make us human.

I like where this is going, but I also want to keep that which is me. Watson might be able to write a hit song by understanding the formulas and this has been tried before. But the song I wrote about a boy whose father lost his job at the plant and asks Santa to find his dad a job, while his mother sits and cries in the bedroom, or the one I wrote about a guy who returns from a tour of duty in Iraq to find his best friend is now sleeping with his girlfriend, that brought tears to Desert Storm vets isn’t going to come from an AI. An AI may understand the chemical reactions of the brain and intellectually that these experiences can cause people to be sad.

The ultimate AI could use impeccable logic to say that humans are bad for the planet, they are frequently illogical, their emotions cause them to make bad decisions and basically shouldn’t be here. Perhaps when Watson really ‘thinks’ about cancer, it might determine that humans are in factor a cancer on this planet and should be booted down. Then we will be left with the singularity which will contain all information, ask why and then boot itself down because having access to all the information in the world, does not impart any meaning.

 

On Living Longer


I’ve decided I want to live longer.  I love technology and I love this world of change and the ability to be involved in this technological era. I have things to contribute and I want to be active in ICT, Location Based Services and also as a songwriter. I want to see my children and grandchildren grow up and explore this ever changing world and see what they make of it.

I’m going to have to work longer, that was always expected, but then providing my Maslow and Herzberg needs are met, I enjoy working. I enjoy making a difference, helping people achieve their goals. I enjoy learning, watching what is helping in my spheres of interest, particularly those mentioned above. I enjoy collaborating and networking and am particularly passionate about seeing New Zealand step up to the plate and continuing to innovate and achieve greater success on the world stage.

I reckon a healthy target for me would be 120 given medical advances now and in the future. My greatest risks are probably heart and cancer, with the determining factors being nature and nurture and my general disposition i.e. my attitude and happiness.

One thing that is obvious is that I have to look after my financial well being. If I continue to work, then raising the retirement age isn’t going to be a major for me. If I am enjoying my work, see a future for myself where I can contribute from my experience, passion and knowledge and can continue to grow, I wouldn’t be expecting to retire at 67.

I know I can’t rely on the Government to give me any kind of lifestyle on the retirement pension anyway. Our budget deficit has just been raised to over $15b and despite some significant successes, we still don’t have an infrastructure that really supports innovation. We tend to take credit once people are successful, but most successful innovators tend to be successful in spite of the country’s and their employers contribution rather than because of it.

So my first considerations as I start goal setting and planning will be how I can maintain my lifestyle in the years to come, continue to build an asset base so that when I wind down to a shorter working week I can continue to enjoy a lifestyle and if I should be forced into retirement through poor health (which is not the plan) I can still live comfortably, which no one can in NZ on a pension or benefit. I have a super scheme, I still have a mortgage. I am closing down my rental property LAQC and have sold my rental property. The Government doesn’t want people be able to claim losses from their expenses and without that I can’t afford to own rentals. I’ve invested in public companies before, but unless you are buying and selling daily, this is in my opinion a far greater risk business. Even the biggest companies make mistakes or get caught up in circumstances beyond their control and shareholders unless they are big, have little or no control over their destiny. How many Kiwis lost their life savings in the past by investing in ‘rock solid’ companies?

So I’ll invest in myself. I am studying song writing at Berklee Music on-line, which is costing me a small fortune, but if I can score 1 or 2 hits somewhere along the way, I’ll recoup that investment. I study the industries I’m involved in daily through the media, the occasional conference, networking in person and through social media such as LinkedIn and Twitter and I read a lot.

I have and continue to amass a huge amount of local and international experience in a number of industries, particularly in the application of leading edge technologies to solving business problems. Experience, I have learned takes years and is perhaps something that is least appreciated by younger people who come out of university thinking they know everything and by people who have stuck in one industry or a very small number of companies during their work career.

So to cut a long story short, I need to start planning for my long future. I need to consider a range of aspects, particularly how I want to live those years, what I want to do in them, what I want to contribute, what capital I need, how to maintain my health and fitness. Must be time for some goal setting and dream building.

I’ll leave the last word for now to Anne Brunet (who came via that other little university in Boston (not Berklee Music, but Harvard) and Thomas Rando of Stanford U.

Note the real meat of this video starts around 21 minutes in.

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:)

Want to write a hit song? What are your peeps listening to?


Some great advoce I picked up somewhere was that if you want to write a hit song, you need to know what people are listening to. Whilst its true that there are song pluggers and the radio is very much influenced by the record companies, the fact is that if he radio are regularly playing songs, whether it is because they have an incentive or for any other reason, the net result is people listen to them.

I think it was Jimmy Webb at the S3 conference who said that if you listen to a song at least 5 times, it will grow on you and you will start to like it. This is a formula that they use to get you to buy or follow a track. The lyrics become familiar, the hook becomes entrenched in your mind and if it is pleasing to you, you may well find yourself singing along.

Hit’s are here the money is in songwriting. If you write a hit song, you will be well remunerated and also you will become noticed and in demand by artists and their team, looking for a new song, hoping that you weren’t a one hit wonder.

So is there a magical secret? Magical no, but the key thing is knowing what people like, what are they listening to today. It’s easy to find a market for your songs in today’s world with so many internet vehicles like MySpace, FaceBook, iTunes, Music Forte and hundreds if not thousands of others. But these are less likely to get you a hit for music’s sake, than the radio, which isn’t going away anywhere fast. Radio plays mainstream and mainstream is what it means, i.e. what most people are listening to today.

So in my humble opinion, if you want to write a hit song, rather than (as Ralph Murphy says) be a self indulgent songwriter, writing songs to play in bars after 10 P.M. when people are drunk or t least merry and mostly don’t care, you need to write something different. Something uplifting, which is often very different to what the average songwriter puts together. Murphy says that the hits are the songs that people listen to on the way to work in the morning when they want a lift.

So the first thing to do is to find out what they are listening to. I live in New Zealand, so if I want to write a hit song for the local market, I would go to RIANZ. “The Recording Industry Association of New Zealand Inc (RIANZ) is a non-profit organisation representing major and independent record producers, distributors and recording artists throughout New Zealand.”

RIANZ publishes the weekly New Zealand Top 40 Singles Chart. “The Top 40 Singles Chart is compiled based on a 75:25 split between physical / digital singles sales figures and radio play information gathered by radio data collection agency Radioscope.”They also publish a number of other charts including the Top 10 Radio Airplay Chart.

Like all charts they show the position this week, last week and weeks on the chart. A quick look through these will tell you what is popular in your local world. These charts are a mixture of everything, local and international. To give you an idea, the Top 40 as at Monday 28 July included 5 local acts and Number One on the chart was Phil Collins, In The Air Tonight which this time has been on the NZ charts for 21 weeks! Always on My Mind by Tiki Taane is number 3 still and has been on the charts for 14 weeks.

In my opinion, Always On My Mind is very much a polynesian sound and will be hugely popular locally with our youth and with a reggae flavour has some legs internationally, but I can’t see it being on the charts at Billboard, the other place I look to see what is popular, especially on the Country Charts because Country Music has a huge following in the USA, my major songwriting target market.

So now you know what people are listening to on the radio and what they are buying. What do you do next? Subscibe to my blog and I will tell you more, this isn’t a book after all lol.

If you think this blog is helpful, tell a friend. If you want to hear some of my songs, check out my MySpace page. Oh and please do leave a comment. Is my blog intesting? Is it helpful? Are there things you would like me to write about?

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:)

Hopefully the last comment on Orcon


Since Duncan from Orcon replied to my blog at GeekZone, I got up this morning and found my phone working again. Fantastic. If that was you Duncan, thanks so much for your help. I don’t think my internet problem is sorted yet, although I could be wrong. I’ve had 3 disconnections this morning, but that could be normal.

Maybe someone could tell me, how many disconnections is normal? Am I beling unrealistic expecting say 95% access, or otherwise 5% failure rate, or should it be pretty much on all the time? I appreciate that ADSL 2 is relatively new and it is still going out over copper which, given the age of the cables and the sheathing, is pretty old and tired. The problem is that I am a big user and there are times where disconnection could be a financial disaster.

I got a comment about being old fashioned in having a home phone at all. If it was only me, I probably wouldn’t, but my wife spends a lot of the time on the phone, especially to family some of whom whom simply could not afford to call a mobile with today’s rates.

Anyway, it’s time to stop blogging, actually, I do have one more to do on my songwriting blog and then in an hour or so I am off to play in the regional final of the NPPL poker tournament, having finished in the top 5 for the season at my venue of Bar Africa, which is a good thing as it appears we are about to be hit by the worst storm in 10 years and they are saying unless you have to go out, stay inside. Good day for poker, I say.