I don’t know if it’s going to be better than WordPress, but it is a different community and I’m going to give it a try for my autobiography. I wanted somewhere separate where I could write and publish my new book as a serial, where you can listen and read at the same time. It doesn’t have as many features as WordPress, but it has a strong community, so I’m going to give it a go.
It’s called Substack and that’s where you will find In My Life. There is only one chapter up so far, which you can read while listening to some great music from The Beatles and Miranda Lambert. Even a song from me.
So if you like my writing, or my music, come and have a look. Let me know what you think.
Here is a chapter, not yet edited and maybe not yet complete from a boy called Gino (who didn’t know his name was Luigi) around the age of 4. The Chapter is called Please Turn the Record OverI Can’t Sleep. The book is based around 500 songs that influenced my life. If you are interested in checking out what those songs are, you will find them here, on Spotify.
I must have been about 4 years old. I couldn’t go to sleep without music. We were living in Union Street, New Brighton, in Christchurch.
Entertainment came from the radio or the record player back then and there was always music in our home. I remember calling out to my parents to put on another record, or turn it over because I couldn’t go to sleep in silence. This practice, (not calling out to my parents), has continued to this day. I always listen to music or a podcast as part of my routine to close my mind from replaying my day or focusing on what I have to do tomorrow.
One of those records I listened to back then was a Big Bill Broonzy 78.
What is a 78? It’s a thick black record made of brittle shellac that plays at 78 rpm or rotations per minute. The original record players had a big fat needle and records were often scratched as people lifted the needle off the record, or the record player was bumped, forcing the needle to slide over the grooves.
Many years later at my Glen Eden Intermediate school, and other fund-raising galas around the country, people would pay to throw cricket balls at 78 records mounted on pedestals, and win prizes based on the number they smashed. I never liked that. Sometimes, I would rummage through the boxes to see if there was anything I thought should be saved and ask if I could buy it. I rescued a few, most of which sadly got broken over the years, becoming even more brittle over time.
Now they are becoming harder to come by. One that I saved included Little Richard’s Tutti Frutti and the label says ‘featuring an electric guitar’. Another which I saved, but was disgusted by, and wondered how it found its way to New Zealand had a song called “I caught a n**** in the cornfield”, and I felt it should be kept just as an example of the world my blues idols grew up in.
In Episode 36 of the great podcast ‘A History of Rock Music in 500 Songs’ by Andrew Hickey, he tells a great story of how the great Carl Perkins, a close friend of Elvis Presley, who wrote Blue Suede Shoes, cried when he went to a record store to buy a copy of his latest record and the owner of the music store presented him with a record made of vinyl. He wanted a real record. He was eventually pacified when the owner explained that this was the way young people wanted to buy their records. The fact that Hickey’s podcast is based on the concept of 500 songs may have influenced my decision to base this book around the same number.
One of the Big Bill tracks I fell asleep listening to as a young boy was Minding my Own Business. I don’t know when the album was recorded, but he passed away in 1958.
Later I would perform some of his songs in my blues repertoire, such as When I’ve Been Drinking. It’s fascinating that he copyrighted over 300 songs in his career, yet his fame was overshadowed by people like Robert Johnson who only ever recorded 29 songs.
Broonzy left Mississippi to escape racism and his records were in fact sold as ‘race records’ mostly for a black audience. Another song my parents had on 78, that I loved was the story of John Henry, the ‘steel drivin’ man’ who took his hammer to the captain and said he was ‘gwine’.
John Henry was actually a real person who was convicted of theft in 1866, sent to the penitentiary and worked alongside steam-powered drills, building the Lewis Tunnel in Virginia for the C&O Railroad. They were pretty much treated as slave labour, and his rebellion made him a folk hero. His story can be found in this video from the Virginia Museum of History and Culture.
Eventually my parents got tired of being disk jockeys for me and bought me a clockwork radio. You had to wind it up to give it the power to play and the power wasn’t enough to drive a speaker, but it came with a couple of earplugs, the father of those we wear today.
Some 50 years later, my daughter Tracy bought me one which she knew I would like because I love technology. But I don’t think I had told her how important my first one was.
The radio sat on the white wooden window sill above my bed. Each night I would wind it up, painstakingly get the fiddly dial to tune onto a station that played music, and I would go to sleep.
As any kid does, I would toss and turn in my sleep, pulling on the cord attached to the radio and wake up when there was no give anymore and the radio would be pulled down to fall on my head. Sometimes the cable would have to be soldered back onto the circuit board.
Have you noticed how you can track your life with music? You hear a song and it takes you right back to a special time in your life?
In my last post, I mentioned that I have decided to write my autobiography. People have said I should because I have so many stories about things I have done, places I have been and life experiences, like in this photo, getting to spend time with Claudette, Robert Johnson’s granddaughter in Crystal Springs, MS. Maybe it’s that time in my life, but I have to tell you, I have a lot of living to do and more experiences to come.
The first question was how to do it. I really want to have a multi-media biography and from the earliest age, I have been about music. So I have decided to make it about the music that is the ever-changing fabric of my life. Hence the name “In My Life”.
Copyright restrictions won’t allow me to do what I wanted to do, which is to have the songs playing while people read the stories that tie in with them. But I will find a way that doesn’t infringe. For starters that will be with a link to Spotify where the songs have been selected to weave the stories about can be found.
It’s called In My Life – Luigi’s Top #500 Songs. I have drafted a few chapters already, but am not quite ready to share. Believe it or not, I’m also struggling with which songs to include in the 500. I need to cull some and add some.
Are there songs that resonate in your life, where they evoke memories for you? My song Another Stretch in Iraq did that for a group of retired marines who served in Desert Storm, when I performed it in Longwood, Fl. They came up to the stage in tears, and I was getting a bit worried that I had offended them. Quite the opposite, they adopted me for the night and said it took them right back to those intense times.
Anyway, watch this space for news on my work in progress. Comments are always welcome.
What an amazing time we live in. How have you been? Are you still there? So much has changed in the last couple of years of COVID lockdowns.
My family has grown as you can see and I have been remote working, which has been a blessing under the circumstances. I have enjoyed being surrounded by my children and grandchildren. On the other side my father passed away in June and I was fortunate that we were able to have people attend the funeral before the latest lockdown, but haven’t been allowed out of Auckland for 4 months since then to see and support my mother who is living alone.
As always I am involved in many things. I am working for a health research company as a field coach, currently supporting around 30 people after having spent around a year with the same company as a contractor doing COVID close contact calls and quickly moving to shift leader and team leader roles. It has been great to be part of a team of people.
I have had to leave most of my writing clients because after working 50 hours a week for a guaranteed income, I also wanted time for my own pursuits. I’ve been writing in LinkedIn, mostly about location-based services, which I used to do in the SoLoMo Consulting blog. SoLoMo isn’t currently trading.
If you are a supporter of The Cancer Diaries, that is still a work in progress. I bought Band in a Box software to help me with backing, whether that ends up being how I do the recording of the EP, or whether it is just the tool I use to shape the songs hasn’t been decided yet.
I have been writing jazz arrangements for guitar and am looking forward to opportunities to gig again, even if just in an open-mic environment. I wrote a new song called Quarantine and have started recording it. I’m still working through the arrangement, and it has the same potential for pub-goers to sing with the hook, just as I used to enjoy when performing songs like You Oughta Run.
So often I get comments like “You have lived such an interesting life, you should write an autobiography”. My life is far from over, but I took that on board and have started writing. More in my next post.
We are in the process of trying to sell our property and moving out west to a lifestyle block. I knew but had forgotten how stressful it is to buy and sell your home. We listed just over three weeks ago and it was passed in at auction 2 days ago as were the other lots. Times are changing and our property is a rare one, but one that needs an extended family or a land banker. The next open home is tomorrow, so today we will be once again making sure it is clean and presentable.
Anyway, I’m back writing here and apologise for the radio silence.
Today I read a translation from a Chinese expert, saying that while the Coronavirus doesn’t float in the air for long, it can survive on a smooth surface for several hours and if the temperature is right, they have found that the virus survived for 5 days! If you see someone who isn’t washing their hands, say something politely to them. Maybe rather than worrying about whether you can get face masks, a strong antiseptic spray would be a good investment.
I was horrified in my last place of work by the number of people who did not wash their hands when they finished their business in the restroom and shared this blog with them.
This is really a story about men’s hygiene in the bathroom, but it probably applies to some women as well. I was listening to the Ante Up Podcast as I showered this morning and they were talking about men who leave the washroom without washing their hands after doing their business.
Ante Up is a great podcast about Poker and has lots of great information for amateurs like myself and even those who think they know it all. What’s more they very kindly played my new song I Tilted on their show.
Anyway, they covered an issue that really anoys me, which is guys who go to the toilet and then return to the poker table without having washed their hands. The thing is that of the guys that have been in and out of the bathroom at the same time as me in poker tournaments, as many as 50%…
Since my first blog 6 men and one woman have decided to go and get PSA tests done for prostate and other conditions, motivated in part due to my blog. That is awesome, not only that they are doing it but also reflecting back to me. I hope I can increase that number through sharing my journey.
For those who I have motivated to get tested, I would like to reiterate the message from my blog about life and other insurances. If you test positive for cancer You Are Now Uninsurable. Please make sure you are comfortable with the level of your life and heath policies first. Once you find out you have a life threatening condition, even once you are in remission, it’s unlikely that you will ever be able to get health or life cover again. Even if you are confident you will be fine (like I did) and are just getting tested, (like I did) because its the right thing to do, or because your partner keeps telling you to (like mine did), if the test is positive, it is now too late.
First I’d just like to sincerely thank those of you who have left comments and messages of support, here, on LinkedIn, Twitter, Facebook and other places where I have a presence. I’ve never been in the position of recipient for messages like these before and it’s very humbling. I have also had phone calls and cards from colleagues at work and many messages and prayers from friends, family and acquaintances including some who have survived similar journeys.
A lot of people sent me messages of support for Monday for which my thanks. What you didn’t know is that I wasn’t able to start on Monday as planned, because they had so many people who are starting on Monday with both chemo and radiation.
They wanted me to start on Thursday, but I was down in Christchurch enjoying the balmy weather. It was 32 degrees on Wednesday and 28 on Thursday. I’m usually looking forward to coming home for the warmer weather but it was the other way around.
Last week my wife and I went into hospital to get me inducted into the process of external beam radiation. I’ll spare you most of the detail. It largely involved a CT and MRI scan to ensure that the radiation only hits the affected areas and to minimize radiating healthy parts of my body.
Radiation Treatment according to the Auckland Star in 1903
Anyway, as I walked to the bathroom (part of the process is having the same amount of fluid in my bladder every visit), a woman piped up that she had more hair than I did. Her punchline was that this was because she was wearing a wig. I was taken aback, thinking “how do I talk to someone who has cancer?”
Then of course I realized that I have cancer and people will be wondering how to talk to me. Funny how you have these moments of lucidity!
I realized that I now have the right to share black humor with other cancer sufferers because we are all on the same boat, so I quipped back that losing my hair wouldn’t be a problem for me.
I think humor is a very important aspect of health. People survive many tough times by engaging their sense of humor as my friend the Joyologist Pat Armitstead will attest to.
So back to my new compatriot under the wig. When she was called for her appointment, they asked her if she was well. REALLY? She responded with “I wouldn’t be here if I was!”
As she went off to her appointment I pondered on this topic and was a little disappointed in myself. Clearly she was feeling stressed and I could have sat down with her, engaging with a bit more of a joke or a chat. I will do that in future if I have the opportunity, particularly after my first bombardment with radioactive isotopes. Having become a veteran of cancer treatment, I will feel more empowered.
So how do you talk to someone who has cancer? Just like you would talk to anyone else, just keep in mind that they have a lot on their minds and may be distracted, oversensitive, tired, confused and most likely a little stressed. Lighthearted would be a good place to start. Some of us will be open to conversations and some won’t. Respect that either way.
How should you not talk to someone about cancer? The other day I was in the office lunchroom and an “exspurt” (deliberate misspelling) was giving an oratory on cancer. I was disappointed because he’s a nice guy and he obviously didn’t know that I have cancer. Anyway this kind hearted expert proceeded to tell anyone within earshot that as soon as any kind of cancer gets you, it’s all over Rover. “It will kill you, maybe not today or tomorrow, but they all die from it”, he expounded.
I quietly left the room thinking that in our business, we not infrequently complain that every man and his dog are traffic engineering experts, telling us how to do our job. So if you have an opinion like that, I’d appreciate not hearing it. You never know who you are standing next to and what they are dealing with.
Footnote: This is my third blog about my cancer journey and I had some trepidation about sharing my adventure. It is helping me work through some of my thoughts, but more importantly:
6 people have now come to me and told me that they are going to get tested, motivated by my story and that’s really exciting. If I can help one person, who like me, is in an early treatable stage of cancer, that otherwise wouldn’t have known about it, what a wonderful thing that would be.
I really have appreciated the support from friends, family, colleagues and total strangers, some who have shared intimate experiences and all with kind thoughtfulness.
Don’t be afraid to talk to me or ask me questions, or simply leave a comment. Prostate or any cancer should not be a taboo subject.
These are the words Tom, my insurance broker and consultant said to me a month or so ago when I told him I had Prostate Cancer. Not too long previously I had reduced my life cover and the delay before I can claim on my income protection insurance from 2 to 3 months off work, against his advice I must admit.
By David Fletcher; Dominion
I have spent a fortune on Life Insurance and Income Protection Insurance premiums over the years and never once made a claim. We often debated whether we should drop them and thought about how much money we would have saved if we had put the same amount of money in the bank.
It turns out that there is some cover that I may be able to access from the Income Protection Insurance and I am working through a pile of forms at the moment to prepare a claim. I wouldn’t have known about this cover if it wasn’t for my broker Tom Fox of Canopy Group, for which my sincere thanks.
So far the gap between what Southern Cross has paid and my cancer related expenses is probably in the region of $15,000. A pittance compared to what some people spend on more difficult cancers. Of course I don’t know what’s ahead. I have a little sick leave up my sleeve so if I find myself feeling too tired or unwell to work as a consequence of the radiation treatment, I’m OK, but I’d hate to think of what my situation would be like if I didn’t have my insurances.
So here’s the thing. Insurance is a grudge purchase. We don’t expect to claim and the insurance companies hope we won’t. That’s how they make money and that’s why as you get older the premiums keep going up in proportion to the risk. It’s often the first thing to go when times are tough.
We do have public health, but chances are if I had to rely on it, I would be on a waiting list while the tumors grow and the likelihood of being able to get treatment outside of my work hours is probably next to zero in which case my job could have been at risk. I must say my employer has been fantastic and very supportive which is awesome, but financially its my burden.
I cannot get buy any new insurance, I can’t ever increase my cover. So here’s another piece of unsolicited advice from me:
If you are in your 50’s (and I have lost friends much younger from cancer and other conditions) get yourself some cover before you have the PSA test, so that you can honestly say that you have no known conditions, because you don’t. As soon as it is on record with your GP or specialist that you have cancer, it’s too late.
This could be boring, so stop now if you don’t want details, but after this if you don’t mind. So far since I wrote my I have Prostate Cancer blog, 4 people have said they will now go and get PSA tests. If I can help one person to catch it early like I did, then going public on this would be a huge success. It’s just a simple blood test.
Many thanks to those of you who left me messages of support on my various social media pages. It really is appreciated. Guys, you don’t need to have the digit inserted in most cases. In my case that did nothing other than make my sphincter smart for 10 minutes. What is going to save my life is the fact that I had multiple tests and each test the PSA level was higher than the previous one. I am still within the level that is considered unlikely to have tumors and I have 4 or 5.
When I first found out I had cancer I read all the material, visited Dr Google, rang the cancer society for info and bought a book Winning the Battle Against Prostate Cancer, which came highly recommended. But I wouldn’t recommend any of them unless you need to. It’s pretty ugly reading about the possible side effects of the treatments. I joined a cancer community, which is cool, but not really for me.
Then I did my best to put it out of my mind until I had to think about it, which is now. So while I have been on active surveillance, other than tests and biopsies, I did my best to put it out of my mind. No point in dwelling on it any more than you need to.
So this blog is mostly a journaling exercise on my part to help me work through my trip to remission. If it helps other people, awesome, if no one reads it, that’s cool too.
So the next blogs will be about my journey. It’s probably of most interest to people who first find out they have cancer and perhaps to those who want to know how to relate to someone who has this condition.
It’s kind of interesting because I don’t want this to define me, I have more important things in my life like music, family and a job I am passionate about. I’m not after attention or sympathy. The journaling may be a catharsis of sorts and may answer questions for some people. I’m open to questions or comments and all opinions and experiences are mine. I’m not a doctor. Don’t rely on me for any medical advice other than if you are a male over 50, IMHO start getting PSA tests with your annual check up.
HOPE: Taken in the 2013 Relay For Life when I did my first marathon distance (took me almost the whole 24 hours!)
I was of two minds as to whether to share this, but it is one way of telling my friends, readers, colleagues and associates without having to tell the same story to everyone over and over. It’s not an easy subject to talk about. I’m not comfortable telling it and I know other people find it awkward to know what to say to me, so this is an easy option for all of us. Of course most don’t know yet because it was only a couple of weeks ago that I found out that it is serious.
Technically I shouldn’t know that I have cancer. I only know because my wife kept pushing me because of the health advertising and the fact that we have a huge number of people in New Zealand who have it.
I went to the doctor and said I believe there is a PSA blood test I can get and he firmly prompted me up onto the medical bed in his surgery and told me to drop my pants for the digit test. I didn’t want to but had complied before I even realized what was happening. I’ll spare you the details, other than that my virgin sphincter was sore and uncomfortable for a little while. Since that time I’ve become accustomed to being poked and prodded by strangers and am getting used to it. I know on the scale of 1 to 10 of things people endure, this doesn’t even get off the starting blocks. For now anyway.
The main point of this post is that my PSA at the time was 3.2. The doctor had been monitoring it in blood tests previously and whilst it was within normal levels, it had been increasing every test, always up. So we agreed at I should go and see a urologist.
I had a biopsy about a year ago and they found a few small malignant low grade tumors and I opted for active surveillance. I should have had another one 6 months ago but we seemed to miss each other. I tried eating very expensive sea cucumber TBL12, which didn’t agree with me very much in taste and made me feel queasy, but it was worth a try. Some people swear by it. I also tried Pomi-T, a herbal extract approved by the FDA, but when I had another biopsy in October I was up to 4-5 tumors, still low grade but growing quickly.
So here’s the thing. There are a lot of stories and debates about whether you should be tested. Many people say that you’d be better off not knowing, but if I hadn’t, in another year I would probably be in a significantly worse situation and I’d still be in my 50’s. I might think differently if I was in my 70’s or 80’s.
I was keen to continue active surveillance which means more biopsies and tests, because most of the time I wouldn’t be thinking about it (but you do). The specialists strongly urged me to reconsider and having read extensively and asked lots of questions, I have opted for external beam radiation. If anyone wants to know why, I’m happy to explain my rationale, especially if you are going through the same process. Ultimately it’s a personal decision. They all have nasty side effects, but it has to do with age and lifestyle. I start radiation on 7 December for 8 weeks.
This particular blog is going to focus on whatever I feel like writing about, which is not business. It has always been my soapbox. So if you want more about technology, location based services and futurism, I suggest you ignore this one and follow me at SoLoMo Consulting and The Future Diaries.
The one hope I have from this, besides helping me process my feelings through this time, is that someone who was resisting the urge to get tested might give it a go. Already I know of one person who has been putting it off for years has made a doctor’s appointment. I read some statistics that said PSA tests have false positives and only 1 in a large number of people tested actually end up having cancer. Therefore getting tested is a waste of time.
So I’m that one in a large number whose life will be saved through getting checked out, despite having no symptoms or problems. I like living. I haven’t achieved everything I want to achieve in my work, haven’t seen all of the world and enjoyed lots of special family moments yet to come. I have music and songs to write and perform. I have many more trips to make around the sun. I still have a big bucket list.