Will You Help Me Raise Funds for my Cancer Diaries Project? I’ll Play for You

This Sunday at 5 PM (NZ ST) I will be performing my last Live Stream with Boosted to raise funds for my HAG Project. Yep, it’s a fundraiser as I will explain below. Every penny helps. If I can raise $1,000 Creative New Zealand will match it!

You Have Cancer

These are words nobody expects or want to hear.

A few years ago, I was diagnosed with prostate cancer after a routine blood test. I had no symptoms, but farther testing showed I had several tumours. I’ve lost family members and friends to cancer and while I kept a brave face, there were times when I was close to rock bottom. When you watch TV shows like American Idol, you see people who have amazing journeys as a result of adversity and I wondered if I might have one of those moments.

The Cancer Diaries

The moment hasn’t come yet, but perhaps you can help me turn it into one, even a modest one, through this Boosted campaign.

I have written a series of songs about my journey, starting with the day I threw my director’s chair onto the carpet, smashing the chair and ripping the carpet. That motivated the first song in what I now call ‘The Cancer Diaries’. If I Could Turn the Table shares how I felt at that moment. Most cancer patients will relate.

A BHAG

I want to be able to create a legacy EP and series of music videos to tell the stories and donate it to the Cancer Society, with any proceeds going to them.

After I wrote the songs for The Cancer Diaries and looked at what I would need, it included everything from a jazzy bass to a gospel choir. I found the whole thing pretty intimidating and expensive. I, therefore, didn’t give the project life.

They say things happen for a reason. Maybe this is it.

Care to help me?

I am in remission and the last song in the Cancer Diaries turns this Boosted campaign into a BHAG (Big Hairy Audacious Goal). The song is called Dare to Dream. To make it shine, I need the backing of an inspirational gospel choir. In the song, I ask what remission actually means. I sing about writing a bucket list of meaningful things I want to see and do, and the song climaxes with a huge rousing finale.

I believe it will lift a lot of spirits and bring HOPE to people who have cancer or who have friends and family going through such a journey.

So how about it folks? Would you like to come on my next journey with me? Maybe help with a donation in honour of someone you care about who is on a cancer journey? Writing music is a cathartic process. So is listening and watching. I’m also keen to hear from anyone who can help with recording, backing music, video and of course that gospel choir.

Cost Breakdown

There are four songs on the EP. I estimate that studio recording of the first three will cost around $500 each. Recording the fourth song with the gospel choir is likely to be more in the range of $2,500 given the logistics. It would need to be recorded in a venue such as a church and will need a lot of gear and expertise. Mastering adds on around $800 leaving a couple of hundred dollars over for design.

These costs are based on not having to pay for backing musicians and choir. If I am able to oversubscribe, then it would be awesome to be able to give them koha too, especially in these difficult times when virtually no one in the music industry is earning a living.

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I Need Your Help With The Cancer Diaries

When I was told that I had cancer, I wondered if I might turn it into a moment. When you watch programs like American Idol, you hear of the hardship people went through, which motivated them to enter the competition.

One such ‘moment’ was that with my promotion of Relay For Life, I told my story about catching PROSTATE CANCER early, which motivated more than 20 men got themselves tested, which is awesome.

I started writing songs about my journey and decided to create an EP called THE CANCER Diaries and combine that with a music video, which would tell my stories of tough times and of hope. The final song, which is half-finished will culminate in a song called Dare to Dream,  which needs the backing of a gospel choir for the emotionally inspiring (I hope) finale.

The intention was, and is, to donate the finished product to the cancer society. I am hopeful that it will help other people on their journeys with cancer or in support of people with cancer, as it did me in writing and playing the songs.

Anway, life got in the way.

Since COVID19, the good people at Boosted have set up a program for artists, especially musicians and songwriters to raise funds and koha because they are unable to perform live during the lockdown period. I told them about my idea and they said that it sounded like a great project for a Boosted campaign.

So I have set one up, which you can find here. I will be performing live on Sunday evening at 5 PM right there on that page. Hopefully, it will go well. It took me most of yesterday to get my sound gear working for streaming. It’s probably been a year since I was last on Twitch or YouTube live.

So the plan is to finish the songs, record them in a studio together with a few volunteer musos and create The Cancer Diaries EP and video. I’m also hoping for support from other people who can help with video and especially with a gospel choir. Do you have one hanging around somewhere?

I also need your help to spread the word about the campaign which runs for 30 days from today, in any way or form that you can.

What Your GP or Physio Should Tell you if you Have an Accident in New Zealand.

As you may have seen from earlier posts, I had a back accident 15 months ago and after 4 visits to hospital, the most recent being of 7 days duration, I am still no nearer to getting the surgery my orthopedic spine specialist / surgeon recommended for me and requested ACC to fund.

What went wrong?

I’m going to tell you about 2 critical things. The first is about how I injured myself, by which I mean the primary cause and the second is about who I got referred to.

1. The Primary Cause

My latest accident didn’t seem like much. I was at my 6th Relay For Life in March last year and ready to walk a marathon distance (my goal, which I achieved) over 18 hours.

Setting up prior to the event and prior to heading for the survivors’ tent (I am in remission from prostate cancer), we had a 4 room tent to set up, and the poles and pegs were in a big bag in the trailer that was provided by the organisers to get our gear from the car park to our team site.

It was super heavy. No one seemed to want to get it out, including the guy driving the tractor. So I tried. Unfortunately, my back couldn’t take it and I ended up with a back strain injury that still has me off work today, 15 months later.

I managed to do the distance through the use of medications like Panadeine and I had booked a couple of days annual leave after the event to recover, based on previous years experience. I also had a float and massage the following day, so I didn’t feel too bad after that. A bit sore, but otherwise OK.

A few weeks later, on ANZAC Day, in fact; I remember because it occured on the weekend before the public holiday (a Wednesday) and my wife and I had taken the Thursday and Friday off to go away in the Corvette for a few days holiday.

It had been raining, and on the Sunday before our planned holiday, I mowed the lawn and using the catcher to collect the heavy wet grass. I had to twist on an awkward angle to detach the catcher from the mower, twisted my back again, and the rest as they say was history.

You can read previous blogs but the key point was that whilst an MRI showed damage, ACC weren’t satisfied with the injury having been caused by the incident, they said it was age based degenerative disc disease. They said they would try to see if a previous injury could be relevant that they could tie it to which would convince them to cover the cost of the surgery and herein lies the problem.

A Skydiving Accident

Many years ago I had a skydiving accident. It was a tandem jump and if you have ever experienced one, you know that the customer is at the bottom and the Jumpmaster is on top. When she tried to flare at about 30 feet we got into an air pocket and instead of opening up, the parachute closed down. Instead of gliding to a running stop, we dropped and I took her weight on top of my own, on my tailbone.

It hurt like mad, but I was also flying high on adrenaline from the jump, so I didn’t really feel the pain that much. That night it was very sore, but we went to a big neighbourhood party and I found that bourbon acted as a great pain killer, so I managed pretty well and enjoyed the festivities as long as I didn’t make any sudden moves.

That night there was a bit of a storm and one of our trees was blown over.

The following morning, I was trying to clear branches in our yard, bent down and found I couldn’t straighten up again.

I went to physio who asked what happened and I told my story, the ACC record said “bent down and hurt back while picking up branches in garden”. I had 26 physio visits, was referred to Pilates and was assigned a personal trainer.

I did talk to them all about the sky diving, but it never made it to the ACC records. It therefore registered as a strain.

Another Accident

I was racing my land yacht in a 180 km enduro on 90 mile beach. I crashed at the northern end of the beach, picked myself up and raced back again and had to endure racing through snapper holes around Ahipara Beach, which is like racing on sheets of corrugated iron. Lots of pain, but again lots of adrenaline. For much of the race, I was going at speeds of up to 100 kph on a thin cushion as you can see on the video above, and with my feet sitting on a steering rod so all of my weight was on the lumbar area of my back.

At the end of the weekend it was a 5 hour drive back home to Auckland and a couple of days later, guess what? I was in the garden again, bending over and suffered intense back pain.

Guess what went on my ACC record?

Lots of physio for an injury sustained doing gardening.

So, when the specialist looking for reasons to not approve surgery (me having had every other treatment they could think of, for over seven months), they looked at what I had been referred for (back strain), looked at old injuries sustained in the garden, so probably not significant, all because I didn’t understand the importance of mentioning the crash or the sky diving on the initial ACC form. After all I was getting treatment. That was all I was concerned with at the time.

So What?

I might have got a very different response to my request for surgery if the primary causes of injuries had been clearly recorded, instead of lost to obscurity. Now I am chasing a Review of ACC’s decision not to fund the surgery which is going to be time consuming and expensive.

So if you are injured and covered by ACC, make sure that, irrespective of which straw broke the patient’s back, that the primary cause of injury is documented, even if you are happy that the treatment will fix the problem.

I’m now in a situation after many back injuries, that ACC are claiming age based disc degeneration disease and I am going to have to prove that I did in fact sustain some major injuries and that it was the cumulative impact of those injuries that has me now needing expensive surgery.

If I had made sure they had all the information correctly recorded, it would probably have been plain sailing for me now, instead of 15 months off work, the possibility of losing my job, and a long, expensive and stressful battle to get my back repaired so I can get back to work.

2. If Referred to a Specialist, Make Sure it is one who Operates in Your Local Public Hospital.

I was referred to a very good surgeon by my GP, largely because he is one of the category of trying everything else before getting the scalpel out and doing major surgery, which in my case will involve 2 surgeons for 4-5 hours and a 5-day stay in hospital.

Because of all the drama with ACC (New Zealand’s Accident Compensation Commission), in April I asked my GP (at the recommendation of my surgeon) to refer me to the public hospital. Whilst I have other medical insurance, it only pays (up to) 80% of the costs, which means I would personally be up for around $18,000 that I have to find myself. It could even be more because they won’t know exactly what they have to do until they cut me open.

So I was referred as ‘URGENT’ to North Shore Hospital on the 4th of April this year. I told them I was not working and that I could come at short notice and asked if they would put me on the cancellation list and they said “Yes, we have a cancellation list, is there anything else?”

I rang a few times, mostly talked to voicemail and the first time I spoke to someone they said “It’s only been a month!” To which I responded, “yes but I was referred as urgent.”

This month I had a flare up and spent 7 days in the Orthopedic Ward at North Shore Hospital. They did an MRI, hooked me up with a pain team and eventually once the pain was under control with drugs, they let me go home.

They told me that the stay would not be seen as my First Specialist Assessment (FSA) for which there is an expectation that you will be seen within 4 months of referral. They said that the Orthopedics Team knew about me and I would probably now be seen within 2 weeks. So they scripted 2 weeks of pain medication for me. They said I would get a confirmation letter from the hospital.

So I got out of hospital on the Sunday, waited until Wednesday and rang to find out when my appointment would be. I had to leave a message on their voicemail. I rang again on Friday and again left voicemail.

On Monday this week I got a phone call telling me that they did in fact have a date for me in late August. Today is the 17th of July.

So much for my 2 weeks of pain medication. I should have got the message when the doctor who checked me out of hospital laughed when I said I was expecting to be seen in 2 weeks.

So what?

If my GP had originally referred me to a specialist who also worked on the public health at North Shore Hospital, there is every likelihood that I would have been referred for surgery at the hospital in November last year, and could well have been back at work by the beginning of this year.

Now instead, I am still waiting for a First Assessment, and they will want to decide for themselves what treatment I should have. So while the logic behind my original referral was sound, the end result is that it set me back anything up to a year.

Hindsight is a wonderful thing, but the point I am making is that you, dear reader, may have a back injury like me, or perhaps a knee or shoulder injury from playing sport.

By learning from my experience, you might be able to have a better experience, receiving treatment within the same year of your injury and not jeopardising your employment and having double the stress. 

SUMMARY

Being in severe chronic pain for over a year is horrific. The potential consequences can be many including

• losing your job,
• becoming addicted to pain medications,
• sleep deprivation with all that comes with that,
• becoming stressed to the point of depression,
• having no social life or family life,
• which also results in relationship stress.

Here are two ways you can reduce the risk of experiencing what I’m going through.

1. If you injure yourself doing something major and then aggravate it with a lesser injury. Insist that the cause on the ACC form is the major impact and the secondary injury is clearly shown as secondary. It might not matter now, but in 10 or 20 years it could save you from the horrible 15 months I’ve endured so far.
2. If you need to be referred to a surgeon, even if you have medical insurance, get referred to one who operates from your local public hospital. You may not end up needing to go public, but at least you have viable options and it could save you many months in getting treated.

The Backstory on My Back

Hi, I’m ACC 18 Number 201905123684, I’ve swapped the numbers a little, although it probably doesn’t make any difference. I’m fairly well known.

My back story consists largely of digital files and probably a few manila folders and other storage media in several Accident Compensation Commission, medical, physio, specialist, hospital, surgeon, Occupational Therapist, Pain Specialist offices around New Zealand. They get shuffled from time to time.

Having said that, everyone on my journey has been friendly, thoughtful and most have tried to help me. A few, who I haven’t met, somewhere in the system have the job of helping ACC to not have to pay for my surgery, with considered justification. I’ll talk about that too.

In March 2018, I hurt my back getting ready to set up for the Auckland Cancer Society’s North Shore Relay for Life event. The annual 18-hour relay, raising funds for cancer services which I have completed 6 times. I started with my family in honor of family members who have died from cancer, including my late father-in-law.

Then I got cancer myself, and during the fund-raising process I’m proud to say that over 30 men got tested for Prostate cancer because of my story, but I’m getting ahead of myself. I was given the honour of speaking at the opening, having refreshments in the survivors’ tent and carrying one of the flags in the first survivors’ lap. A humbling and emotional experience.

Trying, unsuccessfully, to awkwardly pick up a bag of tent poles out of a trailer provided at the venue by the organizers, for a 4 room tent, would set off a chain of events that has opened my eyes to the plight of many New Zealanders, who desperately want to work, but can’t, because the health system is underfunded, under resourced and inefficient.I became one of them.

I have a job. I hold a management role at the NZTA, a job I love with an awesome team of people who provide mostly Real Time Travel Information to motorists and travelers around the country.

It’s been 14 months since my injury.

My Occupational Therapist, GP, Pain Specialist and my Manager have agreed that I can work 2 three-hour days a week. ACC funds taxis to get me there as I could be a danger to myself and others, under the daily pain medication regime I’m on. That allows me to do something productive as well as socialize with my colleagues and not feel totally divorced from my work.

It was part of my back to work program, which has stalled since the Orthopedic Surgeon advised me that we had ‘painted our backs into a corner, having tried every alternative to fusion and discectomy surgery.’

I am incredibly grateful that the NZTA hasn’t dropped me under the bus and that I still have a job, although I am not currently able to perform my normal duties.

Over the next while, along with other activities, I’m going to talk about my life, one shared with my family and friends, colleagues and the health system.

I’m going to talk about what happened, about why I still can’t go back to work, why I am still waiting for surgery after 14 months. How ACC don’t want to pay for the surgery, how I can’t afford to pay for the excess if I went private, and my current experience with the Auckland District Health Board and North Shore Hospital, where I was referred as an Urgent Patient on the 9^th of April.

I have not yet been able to connect with the person who makes appointments. When I rang them at the end of April, the hospital representative at the Patient Service Centre said they must see me within 4 months, and it was too early to ring. I was told it wasn’t worth ringing before the end of May and even then, not to get my hopes up. I rang today and left a message on their voicemail.

I have Prostate Cancer.

During the dark days of 8 weeks of radiation treatment, followed by chemicals, I think I had less than a week off work, on the odd day when I was so fatigued that I couldn’t function.

I arranged my radiation sessions to be around 7AM every morning so that I could go straight on to work afterwards, and still be on time. That’s how I roll.

I am now fortunately in remission, and my latest blood test last week showed a good result. The irony is that Cancer is fatal and there is every possibility that one day, hopefully decades away, it will kill me.

On the other hand, chances are very good that after back surgery, I will be a little sore from time to time, manageable with over the counter pain relief. Yet, for cancer I had less than a week off work and with a back injury it has now been over a year!

Mine is a common story, but one with which for the first 40 years of my working life I had no personal experience. I’d heard stories, mostly about people who allegedly don’t want to work, and enjoy living off the taxpayer’s dollar, but there are so many more people like me, who desperately want to work and contribute to society. If you have a look at my profile on LinkedIn you will read that my goal in life has always been to help people.

I consider my work important, a contribution to reducing the pain of traveling on our ever more congested road network by offering information about planned and unplanned events, about expected delays, alternative routes, alternate modes of transport, helping people plan for holiday road trips and much more.

I lead a team of awesome people who really care about you, their customers. It matters to me, but I’m being kept from it.

It’s funny, we talk about the cost to society of people who are needlessly killed on our roads. The cost takes into consideration the contribution they will make to the country’s GDP over their lives. Yet, the cost to taxpayers to get me back to work by providing me with back surgery, is far less than the cost of keeping me away from work.

As I said, mine is a common story, but it’s not one that people like you and I can easily relate to, unless we are directly affected.

Of course, in each instance, it’s not just the patient, it’s our partners, our family, our friends, our colleagues and of course the workload that must be done by someone else, or perhaps not at all.

I’ll try to make the story interesting, maybe even have the odd laugh. But let me tell you, this is no joke. I have gone from being super positive and highly motivated, with a bucket list of things I want to do which I prepared when I found out I have cancer, to being virtually trapped in my home, on the border of depression, not being able to stand, sit or lie down for any length of time without significant pain.

I’ll share an email I sent to ACC after having read a report prepared for them by a specialist, who said that “The patient appears to be doing reasonably well”.

Interestingly, this person who was paid by ACC to investigate my case did not once speak to myself, my GP, my Orthopedic Specialist, my Case Manager, my Pain Manager or my Physio.

I guess ‘reasonably well’ is a relative expression. I’m not dying.

The email is quite personal, but that’s really the point. I am a person.

Anyway, that’s it for now. I’m hoping to hear back from the hospital today and am getting on with other things in the meantime.

You may find my story interesting; you may be in a similar situation yourself. I know I’m not alone. I understand it was stated in Parliament Question Time last week that the number of elective surgeries completed last year was 10,000 ‘elective’ surgeries less than the year before. Reasons included strikes and funding. It’s little wonder it could take months for me to just be able to speak to someone.

Feel free to comment or ask questions. I know I’m not alone here and you may be in a similar situation to mine. I grew up as a fan of New Zealand’s welfare state. I learned that we are the system and that if we don’t stand up for something, no one else will either. I just didn’t know how bad it was.

So, you there. Have you had any experiences like mine? How do you get some action without ruffling people’s feathers and having your manila folder dropped down the list a little? Of course, that wouldn’t happen would it?

I welcome your comments.

 

 

 

 

Thinking About the Consequences of our Education System, Bullying, our Health System, Coach Azul, Cameron Harold and FREE Publicity

I listen to a lot of podcasts. I was listening to them while commuting to and from work. Then last year I suffered a back injury and I have been waiting at home, consuming pain medications and exercising for what seems like forever, for ACC to approve spinal fusion and a discectomy so that I can get back to work.

Around a week ago they notified me that they are not going to pay for the surgery on the basis that I have degeneration in my discs that was not caused by the injury. It ‘rendered them symptomatic’ and I am now waiting for an appointment with the Waitemata District Health Board, whilst working on a review claim with ACC, New Zealand’s Government Accident and Injury insurer, who I feel could have had me back at work 6 months ago. They are still covering me for the back strain, but my specialist has said that they have tried everything bar surgery. “We’ve painted ourselves into a corner” he said.

I’m told that the North Shore Hospital spine surgeon is fantastic, but they also told me they have to legally see me within 4 months. In other words, just because it says “urgent’ on your case file, doesn’t mean you will even get to speak to someone anytime soon.

So I’ve had a lot more time to listen to podcasts while exercising, strengthening my core, whilst awaiting the needed surgery I still need, so I can return to work. I suspect there are thousands of people like me, numbers that get recycled in meetings focused on saving money. Ironically, when I work I am saving citizens much more money, but I digress.

One of the podcasts I enjoy is from Azul Terronez called Born to Write. If you follow me, you know I am passionate about writing and storytelling as a means of sharing a message on my various blogs and books.

The latest podcast from Coach Azul really resonated with me. The guest was Cameron Harold, a writer, entrepreneur, business mentor and founder of the COO Alliance.

He talked about some struggles he had growing up when he was told that he was  not academically in the top 40% of students and how he battled in his mind with that through school and university.

His story to becoming an entrepreneur resonated with me but from a different perspective, particularly the education part. It fascinates me how education systems seem to fail at both ends of the spectrum, contrasting with today’s apparent dumbing down of some generations whist the skill levels that create our greatest achievements are held back, limited to those who often achieve despite the system, rather than by its design.

I was one of those kids who didn’t fit in school, particularly once I got to high school. This was not because I wasn’t in the top 40%, but because I was in the top 2%. I’m starting to write about it, but not at this stage for publication.

I used my smarts to survive in a school (being a good guitarist helped) where the height of success was failing exams and getting into the school rugby 1st 15. In my school an A+ meant getting bullied for showing up the other kids. We had streaming, but being in the ‘Ac 1’ class also put a target on the back of your head.

Even teachers who tried to encourage kids to do well were on occasion beaten up and thrown down stairwells because the kids they tried to help were embarrassed in front of their peers. I liked sport (I played in previous schools, hockey and club soccer when living in Holland) but the thought of having to stay at school a minute longer than I had to (for training) was anathema.

The podcast I listened to this morning was about getting FREE publicity. I learned similar lessons to Cameron Harold early in my career, when I was racing landyachts as a hobby sport, and I was looking for sponsorship to send a team from New Zealand to the USA.

Me on my Class 5 Winger on 90 Mile Beach

I needed publicity to attract sponsors for a sport where one minute you see the yachts racing over the sand on a long beach or on the tarmac of an air base; and for the next half an hour or so, you sit there waiting to see them briefly again as they would fly around a mark, crashing into each other on 2 wheels. It was a great spectator sport for about 4 minutes of each race that could take up to an hour and a half.

I did two things. I got a well worn small book from the library. I don’t recall what it was called but it may as well have been called “Get the coverage you want by giving the media what they want”.

One of the things it said to do was to ask them what they wanted. That seemed to simple but I did it. I rang radio sports journalists, I rang TV, I rang magazine editors and I rang newspaper sports writers. I introduced myself and gave a quick pitch of why I was ringing, explaining the challenges of a fast exhilarating sport, with yachts on wheels doing over 100 kph on the beach that no one had heard of.

Next thing I found myself in the newsroom of the New Zealand national daily, speaking with the Sports Editor. End result, they got some great stories, we got global TV coverage, we got international magazines and radio stories, we got sponsors and our team (unfortunately I had to pull out at the last minute) went to the Nevada Desert and won the America’s Cup of Land Yachting! And I learned how to get more than my fair share of media coverage for my employers and my modest entrepreneurial ventures.

Ironically listening to Cameron’s story, and despite being very gifted intellectually, I didn’t do any university study until much later in life, because I spent many of those teenage years rebelling against a system that had no place for bright people. I’ve had a pretty exciting life so far and I feel I have made a strong contribution in my endeavours, but I also wonder if I didn’t live in the land of Tall Poppy Syndrome, how much more I could have achieved if the education system had acted on what they discovered about me and nurtured it.

Which sort of brings me back full circle to my ailing back. I have now sat down too long writing this and need to do some stretches and exercise as I wait for my number to be called by the Waitemata District Health Board for my first specialist meeting, so I can have my surgery and get back to my job. When you’re a number in the system, a few pages in a manilla folder, you are equally invisible if you want to work and be productive as someone who will quite happily live on a benefit.

Does any of this resonate with you?

 

When People Say Good Luck

I was in the shower this morning listening to Episode 55 of The Poker Mindset podcast.

One of the topics they discussed was wishing people good luck. Like saying “good luck on the table tonight”. Gareth made a great comment along the lines of (paraphrasing) so the 3,000 hours of playing on the tables and 500 hours of study, come down to good luck? I hope not.

It’s been a while since I consciously thought about this, but I rarely wish people good luck unless it is with their Lotto ticket or something that truly requires luck. There is no skill in parting with cash for a raffle. Otherwise I do feel that wishing someone luck, is almost a sign of disrespect. You know, like a sarcastic “Good luck with that!”

I’m waiting for approval from ACC for back surgery and when it finally comes, I don’t want people saying good luck. I’m relying on the surgeon having completed years of diligent study, of his attention to detail, a great team alongside him, all with many years of experience and the fact that he has performed the particular fusion operation, which is fairly new, over a hundred times with only one surgery that had complications which I believe were unrelated.

I met a cop recently (I only mention his occupation because fitness is a crucial part of his daily work) who had the same surgery from the same specialist, and he was back on the job after 6 weeks of recovery. That’s what I want.

I was going to write a spiel about some of my many past career successes, but it started looking like a memoire when I still have a good chunk of my career ahead of me. The crux of it was a saying I really like and that is probably all I really needed to say.

The harder and smarter I work, the luckier I get.

Your thoughts?

My Injured Back Loves Float Culture AND my 4th Float in 1987

If you have been following these blogs, you will know that I have been off work with 3 bulging discs in my back. On Monday the surgeon told me we have now tried all non-invasive treatments and he has sent an application to ACC, our national insurer for accident injuries, for fusion surgery. The good news is that after the surgery has been completed it will simply be a matter of recovering and a 99% likelihood of getting back to normal work. Believe me when I say I am eager to get back.

Meanwhile, I’ve been going to Float Culture a bit more often  and I have to tell you it is having results. Yesterday I felt the least pain over a complete day since I injured myself back in April. I was down to pretty much zero inside the tank and about 3/10 when I got home after the massage from Kim. When I went to bed it was about 5/10, normally 7/10 and today the following morning, after my exercises, it is about 4/10. I didn’t have to get up in the night, although I did wake at 4.

I believe this is the cumulative effect of previous floats, which is amazing, because even with the drugs, this is the best I have been. It will be interesting to see how long it lasts. If you suffer from chronic back pain or other limbs, I strongly recommend you try floating together with massage after the float.

I don’t get anything for this, I’m not an affiliate or anything, I pay the same as anyone else, but tell them Luigi sent you:)

So back to the future and my 4th ever float from my journal in 1987

I fell into a relaxed state very easily this time. Nothing very interesting. I felt tension in various muscles that had been used in the last few days.

Several times I noticed that I was floating deeper in the water than previously. I take that to indicate deeper relaxation and less oxygen in my system. I.e. I was breathing more shallow.

I had a number of violent muscle spasms, some causing minor splashes. Not painful, but sharp and sudden.

A highlight was a sensation that I was a speck floating in a black void, with vivid white streaks of light like miniature comets racing in two opposing directions. It was like a 3 dimensional hallucination. I was in the middle, but simultaneously watching from the outside looking in. 

One other strange experience, another hallucination which was particularly vivid. I felt sudden euphoria after imagining I heard 3 musical notes, 2 of the same tone and one a major third higher, in an even tempo.

Getting out, I felt reluctant and disappointed at leaving my comfortable cocoon. I felt reasonably normal, though very relaxed as I climbed out and had a shower.

I was thinking that this float had hardly had any effect on me, as I buttoned up my shirt. It was only then that I realised I had put it on inside out. I then started feeling a little light headed.

I started feeling mildly euphoric and experienced something like tunnel vision. I found myself highly amused by the red dye which infused from a herbal tea bag in my cup. It appeared as though the tea bag was bleeding.

There was a guy sitting opposite me in the lounge, where I rested after the float. He grinned and laughed quietly to himself, arose and walked out. I grokked him. 

Coming home I felt an abnormal burst of energy and engulfed myself in gardening; hedges and lawns. I did not want to sit down and read, even though I had the house to myself. This is highly unusual for me as I am a bookworm and generally read 2-3 books and a magazine or two, more or less concurrently. 

Just as a footnote, regrettably after my cancer treatment, I no longer seem to produce much in the way of endorphins or adrenaline. So whilst I feel very relaxed after a float, I no longer feel the flush of natural opiates that most people enjoy after a float. The reduced pain I’m feeling right now though is more than enough reward. Perhaps I am now producing more encaphelins than normal. These are the body’s natural pain killers. That’s a plus. My back has now though, after writing this gone up to about 5/10, but for the first day in 7 months, yesterday I felt very little pain for an entire day.

Anyone with a major injury, or perhaps a condition like polymyalgia will appreciate what that means. Again, if you suffer from any form of chronic pain, I strongly recommend taking not one, but a series of floats. Constant pain 24/7 sucks, I can tell you. If that is you, what have you got to lose?

There are ways to make this economical. I pay a monthly subscription that not only gives me cheaper floats, but every couple of months they give me a couple of vouchers. There will be two first time floaters heading to Grafton some time in the next couple of weeks, one of whom is claustrophobic. She will try one of the rooms and can leave a door open.

 

@Orcon, Should I Stay or Should I Go?

Life used to be so easy when it was just Telecom who looked after landlines. Now when something goes wrong it’s all like, “your call is really important to us and is there anything else we can do for you?” BUT:

Our connection, which is unbundled, (so there is no dial tone and if the Internet is down, so is the phone) started playing up on Friday. Saturday it was on and off intermittently. I rang the nice man at Orcon who said that they would put a monitor on the line and he could see that it had disconnected about 9 times so far that day. So there was definitely a problem.

He said they would monitor it for 24 hours and see if they could find the problem. I was OK with that. I’m not an unreasonable person.

But I never heard back from them and it continued to be on and off all weekend until this morning, as I was trying to sort out emails and confirm my hydrotherapy for midday for my back injury, it all died. No phone, no internet.

So I rang them again and told them I suspected it could have been something to do with the company who looks after our water who had done some repairs for a neighbour and I asked if anyone else had any problems. “No” they assured me, Chorus had not advised of any other problems.

So they said they would try to get someone on to it today BUT:

• If it was on our property, it would cost us $130 for them to locate it.
• If they had to come inside and fix something it would be $230; and
• If I wasn’t home when they had to come in to check it out, and they therefore couldn’t come in, they would charge me $130.

So I had to cancel my hydrotherapy which I had been looking forward to. If you’ve ever had a serious back injury, you know how good it is to be in water and not have gravity pressing down on those bulging disks. The therapy is very important and I am doing it to either avoid serious surgery, or at worst be strong for a speedy recovery if I need it. I don’t need the stress on top of the pain.

 I went up to the end of the driveway to see if there was anything obvious and found an engineer who was working on a fault for my next door neighbour who apparently had reported problems since Friday and also had no Internet or phone!

The problem is that her account is with Vodafone and it seems that the left hand doesn’t know what the right hand is doing. With so many companies busy clipping the ticket of old copper wires, you have to wonder what happened to the ‘Kiwi Share’.

Given that I couldn’t go and do my physio, I got my daughter to stick around so I could at least go for a walk around the block and not get ‘fined’ if Chorus needed to get into the house.

When I got back I learned that yet another neighbour also had no phone. He didn’t report it because he knew that Chorus were working ‘on the line’. But he was with Spark, who don’t share information with Vodafone, who don’t share information with Orcon. It seems that internally Chorus don’t escalate things unless they are widespread, so they treat each call from the various ‘providers’ as isolated events.  My third neighbour didn’t realise that if he didn’t report it, nobody would know he had no phone or Internet and it wouldn’t get sorted.

So he is now ringing Spark and between us we don’t know if there are any other neighbours with a problem.

I did get a nice email from Orcon  saying “We’ve Got This’ and suggesting that I might want to reboot my modem as this often solves ‘problems’. I was thinking more that the telecommunications systems of virtual telecommunications providers might need solving.

I replied to the email from Orcon telling them how annoyed and frustrated I was with all the advice of what everything could cost me, when I know the problem is not on my side of the network. I then got a nice automated response telling me that they usually deal with issues within one working day and there were a couple of websites with “loads of answers for some of the most common questions”.

Next thing you know, as I am writing this, a Chorus wagon comes down my drive with another engineer who apparently knew nothing about the first engineer that had the plinth off, working on my neighbour’s line. No wonder they need so many lots of $130. I can’t imagine the overhead this all takes.

What I also don’t understand is why so many people have to be manually engaged in help-desks (at least one for each brand), manual testing and logging calls whilst not communicating with each other. Why doesn’t the network have some sort of intelligence that monitors lines and reports faults and outages?

I’m not being silly here. My first job was as a Technical Service Officer and I was the guy on the other end of ‘Faults Service’. I was highly trained and given a very thorough knowledge of all aspects of telecommunications. Now that was a long time ago and the systems were already reasonably sophisticated.

It was very easy to run ‘line tests’ and if there was a fault, we could usually see what type of fault it was from the ‘Test Room’ and what type of person (faultman, lineman, cable jointer etc) we would need to send out to check on the problem. The types of tests they do today are not dissimilar because much of the country still uses those same copper cables that haven’t been replaced in many decades.

I explained to the new Chorus representative what had happened. He went and had a look and eventually came back and told me that there was a problem in the neighborhood and that he would  report it to Chorus so they could send the right kind of engineer, probably tomorrow.

He also said that for a small monthly fee I could have a service agreement maintaining the telecommunications system on the inside of my property and house. I have never had a single problem in my house except for faulty Orcon routers! With today’s systems I don’t need to use the slick Cat 5 cable system my house was wired with, everything is wireless. I don’t use any of the other jack points. They are now redundant.

So now, he has told me they will hopefully send someone else out tomorrow!

So what do you think? Should I stay or Should I Go Now. Isn’t it ironic that this song is by The Clash.

I just got a text message saying the first available technician will be booked to look at my problem tomorrow. They had better come before my dentist appointment. They charge a lot more than $130 if you cancel on them.

Am I being unreasonable? Can one of the other Telcos do better? They know how to charge and threaten with additional costs, but what about compensation for me, including mobile data and lost time?

 

My Latest Float at Float Culture and my Second Ever Float in 1987

So yesterday I had another float and massage at Float Culture. My back pain from my injury back in April is still hovering around 6-7/10 most of the time and I was so looking forward to the zero gravity and a great massage from Kim.

I had booked the Cosmic Room, which is a newer float tank, which instead of being a pod like the one I showed a photo of in my last blog, which was also cool, this one is more like an Alice in Wonderland meets Dr Who.

What is really cool about it is that while it is still a floating tank, you enter through a door and it is high enough to stand in, which is great when your time is up and you want to stretch out. I can’t say one is better than the other, when you are in the dark in total silence, floating on a silky nothing, it is really irrelevant. It’s also easier if you have a physical injury in regards to getting in and out.

When you come out after your float, the atmosphere is pretty cool. Bright colours and a picture of a galaxy awaits your heightened senses, especially if your body produces endorphins, which mine isn’t good at since my cancer treatment, along with low cortisol and virtually no adrenaline, I don’t experience the mental natural high that you will, but there are so many benefits from floating that it’s no longer an issue for me. A lot of cancer patients float. Relaxing when life is tough isn’t easy, but here you have no choice.

I think I’ll turn this into two blogs because the next one is going to be quite long and possibly boring unless you really want to know more about the floating experience in detail. Being a geek, I did.

When you have been in chronic pain for 6 months and any time you are awake, gravity wants to push your vertebrae together and you are constantly dopy from pain medications, being in an environment like this is bliss. I was pain free for most of the day yesterday and what you might take for granted (just feeling physically normal) was wonderful for me.

I met, Anton the owner of Float Culture and we had a great chat with him and one of his team about how there is a resurgence of interest in floating and sensory deprivation, some of the history of the origin of sensory deprivation tanks. More of that perhaps in another blog, but for now I just want to say:

1. Whether you are physically or emotionally stressed, injured, tired or just want to try something new, I strongly recommend going for a float at Float Culture in Grafton.
2. If you are totally relaxed, life is great, and you just want to try something new, refer to 1. You don’t have to be suffering in any way to get a benefit from it. The experience will still be amazing.
3. Go with a friend, they have several floating rooms. But you might need to book a few days ahead. They have an app and you can also pay a subscription and get better pricing if you go regularly and even free passes for friends. One or two lucky people who talk to me nicely, might be able to get one of those.
4. Have a float followed by a massage. Imagine having a great massage when you are already totally relaxed. If you’re thinking about a day spa and want to try something new. Do this.
5. Tell them Luigi sent you. I want them to know that I am recommending them because I want them to do well. There have been some years where there hasn’t been a float centre in Auckland, which was frustrating.
6. 6. Just do it. Make a booking today. If you’re not totally convinced, read some of these testimonials from other floaters.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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