I got Chastised for Owning a V8 Last Week


I felt like I was being made out to be a bad person and it shocked me. I’ve always considered myself a green person. I have planted tens of thousands of trees, lobbied for feed-in tariffs to make it attractive and economical to get the masses to install solar power. I’ve encouraged ride-share systems and spend a lot of my working time encouraging people to use public transport and to reduce the impact of congestion. I point out to people when their car or truck is blowing soot from the exhaust pipe and if I pick up rubbish that others have thoughtlessly discarded.

Since I was little I always loved Corvettes. As a boy i would watch them on TV and see the odd one in real life. As an adult I had a business associate who owned one while I just had a replica model.

20160611_175607 (2).jpgThe colleague who castigated me used to work for a car manufacturer and has a passion for motor vehicles and motor sport and maybe he was just envious of me that I have a sports car, but it made me feel bad. It shook me, perhaps because the car is an indulgence.

I didn’t bother telling him that I have cancer and that it made me decide to do a few things for myself and my family that were on my bucket list, things that like most of the people I know, I never expected to achieve. Anyway, now when I drive my 350 Chevrolet, people give me the thumbs up, kids stop and look at it as  drive past as I did so many times when I was little and I see big grins light up on their faces, just like I did. People compliment it and I feel like they feel happy for me in gas stations. They don’t know my circumstances and might think I’m rich. I’m not. The only new vehicle I have owned in my entire life was a no gear pushbike.

I have my dream car and I spend as much time cleaning it as driving it, which I find therapeutic (it helps me take my mind off my next lot of tests), while listening to business coaching, self improvement and music podcasts. It’s in great condition, doesn’t blow smoke (and neither do I), I never deliberately speed (in fact I am helping to test a green driving app) and  so the engine is never working hard, it is in fine tune so there is very little pollution, in fact I think it drives much cleaner on high octane petrol than the average car let alone the diesel soot smeared black smoke spewing trucks I see delivering frozen food to retailers.

I have spent half of my life working in voluntary unpaid positions after work, from boards and committees including as a Civil Defence Rescue Team Leader, Chair and committee member of boards including a music centre that has taught thousands of children to play music on instruments they couldn’t afford to own, volunteered in a food centre providing vegetables at farm cost to people who couldn’t afford to pay retail, fund a guide dog, support charities and worked hard all my life.

I indulge myself a little when it comes to my guitars and continuing to lean music and have done some travel (most of it on business with very little time for myself) and I consider myself to be a good citizen. Don’t get me wrong, I’m far from perfect and have room to be a better person, but I do care about my community and my environment.

But I do have cancer and I do have a bucket list. I thought I’d wait until I retired before I went and had a but more fun and I’ve recently been pointed out that I am no longer insurable for health and life. Obviously they consider I have a long life span ahead! I haven’t given up on that myself.

I do my best not to judge other people and I’d like to suggest that people who are quick to judge or try to make me feel bad for finally owning my (second hand) dream car should have a close look in the mirror. I hope they never find themselves in a similar situation to me.

 

 

 

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.

 

Dealing with Cancer fatigue


It’s a little after 6AM and I’ve been awake for a couple of hours and decided to get up and do something constructive. My mind has been going ten to the dozen with ideas for my blogs, how to deal with all the exciting things happening at work, cancer and music.

This could become a book, which may help if you or someone you know is dealing with cancer, or it may not. At the very least it will help me as a journal and that’s fine.

Today is about emotions, not just for myself but the people that surround me and about coping mechanisms

The irony is that of all the people I know with cancer, my condition and prognosis is probably among the best. I’m about 6 weeks away from getting my next PSA tests, but the last one was the first one that went down since my 8 week’s of radiation, which is great.

Meanwhile 2 good friends have recently had mastectomies, one last week, she is still in hospital, another is making regular trips to hospital as the cancer has metastized, a colleague who is helping me by talking to me about her situation, which is terminal and another good friend whose cancer has now gone to his brain and is possibly inoperable.. None of these are people I met through cancer, they are just close people in my life.

My boss asked me a week ago how I was doing. I told her I felt I was improving, especially my fatigue and sleep, but that was speaking too soon, because as soon as I had told her that, it went backwards again.

Here’s a classic scenario for me, almost every day. I go to work and try to pace myself, with a goal to walk for half an hour at lunchtime (sometimes I achieve that, maybe once a week, because I suffer death by meeting). I love my work and when I’m busy I don’t think about the cancer at all. The goal is to leave around 3:30 and perhaps catch up on a bit of work reading when I get home or just rest. I then mostly leave between 4 and 5, which is still much earlier than I used to. If I don’t pace myself I really suffer to the point where it is an effort to raise my weary legs to walk from the car to the house, or do much of anything, where previously I used to go home and get on the cross trainer or go for a walk and play guitar. If I make it much later, I have to really think about whether I should be driving, make sure I have a coffee, windows wide open and focus. Don’t worry, I had one tiny moment once and have been ultra cautious ever since. I will not drive if I am too fatigued.

I come home, have dinner and fall asleep about 7PM. Once a couple of weeks ago I fell asleep eating a piece of steak, fast asleep, although my wife maintains I was chewing in my sleep, I think that was a moment when I woke up. I feel ripped off because that is my time and my time with my wife. She tells me to go to bed, but I feel too annoyed about losing my evening, the part of my lifestyle that I work for. By the 3rd time i grudgingly go to bed somewhere between 8 and 9PM feeling really bad for leaving my wife on her own every night.

Despite falling asleep in the lounge, I then need something to help me get to sleep when I get to bed, with which I am gone within 15-30 minutes. During the week I will sleep around 10-11 hours and wake up just as tired as when I went to bed.

On other nights, mostly weekends, I will wake up at 2 or 3 and get up and read for an hour and go back to bed, but I will still usually get 8-10 hours sleep.A couple of years ago I was fine with 6 hours sleep.

The fatigue is hard to describe. It is both physical and mental. At night it is a feeling of being dead tired and I have no control over it. I sit down, we watch TV or read my Kindle and within minutes I’m in a deep sleep. But it’s also physical. I now know what bone weary means, because that’s what’s its like. My whole body is exhausted. Lifting a limb is hard work. I go to play guitar and pick it up, put it down, it’s too hard and  LOVE my guitars.

I’ve been working on my attitude, but please don’t tell me to think positive, I think all cancer sufferers hate hearing that. It’s not helpful. I’ve been focusing, as in my previous blogs about things to look forward to. One of those was my new car. With the help from a malignant cancer clause in one of my insurance policies (which also continues to help with costs not covered by my heath insurance), I was able to by a  C5 targa top Corvette. Something I wanted all my life, but never thought I would ever own. The closest I thought I would get was sitting in one with my daughter at Disney World in Orlando. It is interesting how many people buy themselves a new car when they have cancer.

car

Ironically I wrote that goal in my bucket list app in 2011, not for a moment thinking it would come true and the due date for the goal was about 80 days from when it happened. I am a strong believer in goal setting, although I don’t do enough of it. I am starting to again though:)

But goals and things I look forward to may be as simple as putting new strings on my granddaughter’s guitar and giving her lessons, or a weekend away with my wife and friends, as well as bigger things like doing a rubber ducky boat trip on a glacial lake on the Tasman Glacier, a trip to Samoa this winter, or writing a new song. I’ve had several experiences where things on my bucket list that were highly unlikely, like being able to go to my grandmother’s 90th birthday party on the other side of the planet in Amsterdam, came true serendipitously and I subsequently got to go and visit her several more times before she passed away at 98.

The car is certainly good medicine. I love being behind the wheel and I even enjoy the process of polishing it, while listening to a podcast on my phone. We haven’t been on a road-trip yet, but it is now second nature, more or less, driving a left hand drive car in a right hand drive country. I am now the guy that I used to give the thumbs up to in a gas station or other places, when people see my car.

I’m going to break this up and the next blog is going to be about a melt down I had a couple of weeks ago, which was both bad and good.

 

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”.

 

 

PSA Going Down


For those of you who have been following my prostate cancer story, I’m really happy to be able to report that I had my latest visit to my oncologist yesterday who told me that my PSA levels have finally started dropping.

This doesn’t mean the cancer is gone, but it does mean that things are improving and whilst I continue to be really tired and have other side effects, it’s all heading in the right direction.

I can now go from monthly visits to 3 monthly visits for the next 2 years assuming things continue to improve.

Relay For Life was awesome, thanks so much to those of you who supported team Early Birds. We raised almost $7,000 for cancer research and had a great time doing it. It appears that many of the team have already committed to doing it again next year, even before they got over the aches and pains.

There are still some donations coming in and the North Shore event raised just under $190,000!

Here’s a sobering thought for you, but if you think about it and your circle of friends, family acquaintances and colleagues. One in 3 people in New Zealand will be diagnosed with cancer in their lifetime. If you wrote down a list of all the people in your family and then do those sums, this is a very important cause. Who will it be in your family or circle next? It’s the selflessness of people who fund raise for research that make a big difference and could save the lives of people like you and I in the future.

While I think of it, the Auckland Cancer Society Research Center ACSRC having an open day on Saturday 9 April. With TED Talk style presentations, a tour and loads of information about ground breaking research happening here in New Zealand. Click here for details.

 

Relay For Life 16 Thank you, Thank you, Thank you


EarlyIt’s almost over and tomorrow is the start of the big weekend. I want to thank all of you for your amazing support for my journey with prostate cancer and Relay For Life 16 which starts tomorrow.

If you are in the neighborhood, the Opening Ceremony at the Millennium Institute will be at 3:45 PM and I will be one of a small group giving a brief speech, which is a huge honor in part due to the number of you who have donated to our team Early Birds. Following that we have the first lap led by those of us who have been told “You have cancer” and our supporters and partners. It would be great to have you join us if you can.

If you want to come and say hi or walk a lap with us, our tent is at site A8 right on the side of the track on the opposite side to to main Millennium building.

We have dropped to 5th place in the fund raising rankings, being beaten by 3 schools and a bank, which are hard acts to follow as we are just a small group supporting friends and family. But what a great job you have done! For me personally you have donated over $1,500, our team over $6,000 which adds up to about 4% of the total of around $150,000 which will help the Cancer Society save lives and make the journey easier for cancer sufferers like myself.

I want to give a special thanks to Gemma and Tracy, my daughters, who set our team up for me after asking what they could do to help me get through this horrible disease. They have been awesome. Also to Gemma and Mark for the awesome singlet and hoodies they designed and had made. The 16 (for 2016) is made up of the names of the people our team are walking and running for (for 18 hours!), so we can carry those people with us. Early hoodie

It’s not too late to donate $5 if you haven’t already done so, by going to my page at https://aucklandnorthrelayforlife2016.everydayhero.com/nz/luigi. It’s also never too late to go and get a PSA test guys and I am so proud that 13 of you have been motivated by me to go and get tested and as well as all being clear, now have a base line for future tests.

I will be posting pics on my Twitter account https://twitter.com/bluesbro so if you want to stay in touch and see what’s happening and send me some support.

I am very grateful to the Cancer Society for what they do and to your for your support. This isn’t just about supporting the 1 in 3 people in NZ who will be diagnosed with cancer during their lives (think about those numbers in terms of your family, friends and colleagues), it has also been a welcome distraction for me, something to be focused on and excited about.

As I go through this journey it is about having things to look forward to and making the most out of one day at a time. I am working on lots more things to look forward to, but most of all it is about friends and family. Things are cool, but ultimately its about people and you have helped me more than you realise.

I have never been one to ask for help. The support helps me, but the money may help you and yours in the future. The Cancer Society is not funded by taxes, rates or anything other than donations. So this is the last time and I won’t be asking again. If you can spare $5, please do so at https://aucklandnorthrelayforlife2016.everydayhero.com/nz/luigi.

Thank you, thank you, thank you. Now I have to get to work!!!!

 

Where I first saw Martin Crowe play Cricket


Grendon RdThis is where I first saw #MartinCrowe play cricket. The Grendon Rd Oval. After school and weekends you would often find Martin Crowe, Jeff Crowe, Martin Foster (also deceased) and others playing cricket on the road. Little did we know that he would become a legend.
 
I wish I had gone to the funeral now, but I was just a kid who chatted with them as we walked down South Titirangi Rd after school. They were thoroughly good guys, but at that time, just ordinary school kids with a passion for sport. I think I would have felt out of place among so many dignitaries, so many legends.
 
I so felt for Hogan as he went through some agonizing times where he felt the world was against him, where misguided people ridiculed him, the classic Kiwi tall poppy syndrome. I think that took a lot out of him, but it didn’t stop him becoming a legend. Things people say, bad jokes and innuendos take a toll on people and affect their self esteem, often for life.
 
I am so happy that he received his accolades including the induction into the Cricket Hall of Fame.
 
His standards, his work ethic and attitude are an inspiration. He proved the point that if you put the effort in, day after day after day, you will get the results. I suspect that his commitment to his sport was one of the reasons he and Grant Fox got on so well, being another person who devoted so much of his time to practice, train, practice. Today many young professional athletes with natural skills frequently focus on the money and not on what it takes to be a star.
 
They say that if you do something for 10,000 days you can become expert at anything. It has been proven in sport, music and other areas. If you have the genetics to go with it, even more so, but ultimately it comes down to attitude and commitment. Also passion. For some people that is there from the start, for others it comes with success.
 
I hope that we as a nation are growing up and that those who like to shoot the tall poppy’s down think about the damage that they do to people. If you see or hear people doing it, don’t just stand by and watch.
 
Another man cut short by cancer and gone too soon. I do relate to Lorraine’s, Jeff and others comments about cancer saving him, giving him a chance to really think about what ultimately matters at the end of the day. “Authenticity, loving and full of prayer”.
 
As a cancer sufferer, I also tried one of the alternative treatments, because I was told he was trying it, a sea cucumber extract. It apparently helped him for a while.
 
As someone with cancer, I relate to his awakening and focus on living in the moment and enjoying whatever life throws at you. It’s hard to do and sometimes shit needs to happen before it really sinks in and even then living in the moment positively, day after day, while you undergo radiation or other treatments and wait each month for results isn’t easy, but it is important to stay positive and it was awesome to see him looking so dapper when he got his recognition.
 
When I do Relay For Life next weekend, I will be be remembering a kid ad his brother I chatted with walking down South Titirangi Rd when I was in my early teenage years. Just local Titirangi kids. I will remember watching him play in Cornwall Park, Eden Park and countless hours on TV.
 
RIP Hogan. You fought your cancer the way you played your support. With dignity and courage and you learned how to make the most of it with your friends and family. I am also reminding myself of my priorities, self, family and friends being at the top of the list. I doubt that you knew that many people suffering with cancer took strength from the way you dealt with yours. I’m grateful for you. We will remember you as a great person and a great Kiwi.