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


Ward 9As 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

Blackroom Relay for Life 2016 Print-47My 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.

FC9I 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

IMG_0974Many 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.
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The Backstory on My Back


acc HELPHi, 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.

Blackroom Relay for Life 2016 Print-47In 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.

20170325_155154Trying, 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 9th 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.

Mercy ScannerDuring 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.

seatI’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.

 

 

 

 

Prostate Cancer, Gory Details, Treatment Choices and Relay For Life, Can You Help?


IMG_0817

A sign we walk past during the night in Relay For Life

I’m writing this blog to ask for your help in raising awareness and fundraising for Relay For Life, to support the Cancer Society in raising funds they need both for cancer research and to support people who need help, from counseling to transport and even free accommodation when people have to travel out of town for treatment.

The Cancer Society is funding research amongst others in the area of treating cancer like a virus, which is showing a lot of promise and would mean that people like me in future might not have to go through the treatments and processes I went through.

IMG_4287Can you spare $5 in support or in memory of a friend or family member with cancer. You can do so here. You can do it with a message, you can leave your name or mention the person you are supporting, you can do it anonymously and if you are in New Zealand it is tax deductible. I’ll bet that you, dear reader, know at least one person who has cancer. Several of you of course know me, so there’s one.

Like my previous blog, if I get some donations, I will spare you some of the gory details that we prostate cancer patients have to deal with.

I would dearly welcome your donation, I’m struggling in receiving them this year. Where I am doing well, is that the number of people who have told me that they have been motivated to get tested for cancer has now risen to 20! Every single one of them is cancer free and more importantly know so and have baselines.

So in my last blog, I spared you the gory details of the first visits to the urologist and trading my dignity for hope.  Now I am going to offer to spare you details of some of the side effects of prostate cancer treatment, some of which I endured and some of which I chose not to risk. I had to make decisions based on choosing life (if possible) and the most suitable treatment for my lifestyle and work.

IMG_2184 (2)Some of those side effects included painful urination, short term or permanent erectile dysfunction, never producing seminal fluid again, the length of your penis being reduced, damage to other organs, chronic fatigue, loss of libido and depression. Some of these are experienced by most prostate patients and some depend on the choice of treatment, which of course depending on the seriousness of the condition may not be optional if you want to live. It’s also important to recognise that everyone responds differently to different treatment.

The next steps were a series of biopsies. I’ll spare you the details of how they do that for prostate cancer other than that they approach it from behind. Initially they found 3 tumors and confirmed that they were malignant. Then over the next few months, scans and 2 more biopsies confirmed that I had at least 5 and they were slow growing.

They gave me 3 options. One was to implant radioactive seeds into my prostate a treatment called Brachytherapy. Here’s more if you’d like to know more about how it works. I decided against it because it meant staying away from my granddaughter and pregnant women for about 6 months. Besides not wanting to change my relationship with my beautiful young granddaughter, how do you know if someone in your circle, or even randomly sitting next to you, say on a plane, is pregnant? They might not know themselves.on

IMG_4479Basically you are emitting radiation, which while not powerful, could have unintended side effects for others. The percentage likelihood, very slim, but percentages weren’t working well for me at this time and I wasn’t going to have on my conscience that I could be sitting next to a random stranger, potentially damaging a foetus she didn’t even know existed. Obviously some people do that. You can’t exactly hop on a flight and ask not to be seated next to a young girl going through puberty or a woman of an age that she could be pregnant and perhaps not know it.

The urologist was keen on this option. It would mean a quick procedure and a couple of days later I would be home. It would have minimal impact on my work, but given part of my work is reasonably frequent air travel and what I just told you, it wasn’t a great option. It was a treatment he would perform with my oncologist, who I had yet to meet. Specialists tend to favor opportunities for surgery or treatment that is their specialty of course and I respect that.

IMG_2061The next option was 8 weeks of almost daily radiation on this beast, which includes a CT scanner which would first make sure that every morning, after drinking enough water to fill my bladder and push my organs out of reach of the radiation (where possible), that I was lying in an identical position.

It would give me a 95% chance of killing the tumours. They could accomodate me so that I could go in first thing in the morning, if I got up early and have the treatment before work. They could do it over December and January as well so that would mean 3 weeks where it did not impact on my job.

The third option was to remove the prostate altogether, so if the tumours haven’t spread beyond the gland (pretty difficult to tell), they might get it altogether.

At this point I felt I needed to be informed. What were the risks, benefits and side effects? I thought back to watching Sir Paul Holmes on TV before he passed away from Prostate Cancer in 2013, saying that he wished he had never known he had cancer at all.

So how do you choose? I purchased a book called ‘Winning the Battle Against Prostate Cancer, Get The Treatment That is Right For You‘ by Dr Gerald Chodak. Oh how I wish I hadn’t bought the book, but I’m the sort of person who needs to understand.

It explained in gory detail how the different treatments worked (including some chemical treatments that we hadn’t discussed). Every treatment came with side effects and after effects. I hardly got any sleep for the week it took me to read this book. It scared the hell out of me and whilst you need to be positive, as stress has an impact on your body’s ability to fight cancer cells, it’s pretty hard to make an informed decision that WILL impact the rest of your Teamlife without being informed. I chose the book over Doctor Google, because it was recommended by cancer patient support groups.

So in the end I chose the 8 weeks of radiation and yes it had lots of side effects. Most of these are now over, 2 years later, but I’d be lying if I said it had been easy. If you’d like the gory details, please don’t pop $5 into my Early Bird account.

lava lava

Naked barring my socks, each morning I lay on the scanner, watching them mark with a pen, where the beam should go, trying to hold on to my dignity and my full bladder

Unfortunately soon after 2 months of treatment they told me that I wasn’t in the 95% of people who found themselves in remission after the treatment, but I felt very happy for those who were.

I had side effects from the treatment and scans showed the tumours were still there.

I did work on positivity and put my energy into starting my EP The Cancer Diaries following suppRelaort from my friends when I didn’t have the emotional strength to pick up my guitars or play them. I also took up the offer of free counselling from an Auckland Cancer Society specialist cancer psychologist, one of the services funded by your donations. If you haven’t heard the DEMO of the first song called If I Could Turn The Pages, you can listen to it here.

I hope you don’t want the gory details and will find $5 to shut me up although if you have prostate cancer, or want to know more about getting tested or the journey you are facing, I’m happy to share my experiences with any individuals on request.

Several people have found it helpful to speak to someone who has cancer rather than well meaning people, who haven’t had the experiences or had to make difficult decisions.

Early Birds 2018

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

So instead of encouraging me to talk in more detail about the physical and emotional experiences I’ve been through in the last 2 years, please drop a couple of coins in the virtual bucket and lets celebrate life and hope and support Relay For Life 18 with my team. The Early Birds.

This is Intimidating! I Need Help! A Cancer Journey EP/Video to Help Others Sounded Easy.


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The entrance to the radiation therapy room at Mercy Hospital, the start of my days for 8 weeks

Do you know anyone with cancer, depression or other debilitating conditions? Do you suffer yourself? Perhaps, like me you have a health condition yourself; and like me want to create something positive out of it, including coping strategies and fighting to find yourself back.

Would you like to be part of something that resonates with your values and help support me on this HAG (Hairy Audacious Goal)?

Yesterday I posted about Item #2 of 150 on my Life List inspired by Danny Dover author of the Minimalist Mindset, other books I have read like The Happiness Trap, podcasts like The Hidden Why by Leigh Martinuzzi, people I saw on TV programs like The Voice who had been on much tougher journeys than me and dared to dream of achieving lofty goals during the time I have been on my prostate cancer journey.

With the help of some good friends and family, some also still suffering from cancer I dragged myself out of feeling sorry for myself and decided that number #2 on my 150 long Life List of values based activities would be to created an EP and Video set of songs that were part of my catharsys and development, such that it will resonate with and help other cancer sufferers and their friends, family and support network.

I’m wondering if I have created a monster. How will I achieve this and 149 other things to boot, let alone find the energy for it, without detracting from my day job, which I can’t financially do without (and am passionate about)? How will I achieve this when I still frequently have to be woken up in the evening after my day at the office?

The answer, which is the same one as my cancer journey is that I can’t do it alone. In order to help other people, I need help from a team of people with a rich source of experience and some that can help with less specialist areas of support. Everything from project planners, musicians, vocalists, videographers to sound engineers, artists, production, social media, marketing and crowdfunding. Are you one of those?

I also just need supporters who can help spread the word, connect with members of the team, make cups of tea (or Texas Honey), run around after us and keep us on track and provide emotional support. We’ll need studio’s, technology, sound gear, meeting space, This is a pay it back or pay it forward exercise and should be a lot of fun.

Just since yesterday, I have already had firm offers of help from people, which is awesome and I will take them up on it. I’m going to need a pretty big team with a wide range of skills and it’s a labour of love, a not for profit venture.

Check out this short video with Danny Dover and see if it resonates with you. Is your life meaningful? For some of us it takes a reminder of our mortality and human condition to force change. Then you have to do something about it. You might like to take a similar journey and if you do, some elements may overlap. I’d love it to be this one.

So, this morning I started documenting what I am going to have to do in order to achieve this goal and it is huge. It could almost be a full time job in itself, which  is intimidating, but if I can find plenty of experts in different fields who will support me and donate time and energy; and find funds for the parts that I have to pay for, I’m going to make this happen. I’ve done it before with The Wireless Forum, Glenfield Music Centre, parents committees, sport club committees, Auckland ICT, SMEI International and more, all while keeping down a job. Anyway:

This is what I came up with for starters and it’s by no means complete:

Plan for Cancer Music EP / Video Project

  1. Concept Document and elevator pitch
  2. What help do I need at each phase of the project
    1. How can I even do it while keeping my job and energy?
    2. Project Manager
  3. People or organisations that can help me
    1. People who have raised their hands
    2. Influencers
    3. People I would like to approach for help
    4. Mentors
  4. Finance
    1. How much do I need?
    2. Where do I get it from?
  5. The songs
    1. Finish them
    2. Practice them
    3. Write a story about each one
  6. What do I need for each song
    1. Record basic demos
    2. Identify the sounds I want for each song
    3. What instruments / vocals do I want for them
    4. Find artists
    5. Find a producer
    6. Find a studio
      1. Engineer
      2. Mastering
    7. Record in conjunction with videos
    8. Video the entire process, not just the songs
  7. The video/s
    1. What is the story for the whole production
    2. What is the story for each song
    3. Find a videographer
    4. Write each song story
    5. Find an editor
    6. Production team
  8. Presentation
  9. Publishing
  10. Marketing
    1. Facebook Page
    2. Promo/merchandise
    3. Raising awareness
  11. Launch event and concert gifting the outcome to the Cancer Society
    1. How would they use or benefit from it?
    2. How will it reach patients and their supporters?
    3. How will it endure

Want to be on the team?

Life List #2 Record an EP and Video of my Songs about my Cancer Journey


I know you are a caring person wanting to make a difference like me, or you wouldn’t be reading this blog. I’m looking for advice and assistance on this project and I want to gift the results to the Cancer Society so that many people can benefit from it.

Music is a great healer and I used it as one of the tools that helped me and continues to help me through my journey. When I first was told “You Have Cancer” and got past the initial shock, I watched shows like The Voice and saw the stories of people who had turned horrific times in their lives to good purpose, wondering what did it take for me to do something positive and values driven.

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Where we leave our clothes when we go in for radiation treatment

I decided I wanted to do something too, which started with setting up the Facebook page Musicians with Cancer and other Maladies, I also wanted to try to do something really positive for other cancer patients and their families and friends.

 

So my Life List goal #2 is to complete an EP and music videos to help tell the story of my journey in terms of a cancer patient that may help other people relate to this horrible illness.

It’s 24/7, it’s scary and in many cases results in anguish, fear, depression, pain and death. The story isn’t unique, it applies to other conditions too like dementia.

Last night I watched the movie ‘Glen Campbell I’ll Be Me’ on TV and had tears in my eyes throughout the whole movie and my heart goes out to people suffering from dementia, which our family is also dealing with.

One of my songs for the EP is called “Who Stole My Words” which was about an experience I wrote about recently about falling out of an ocean kayak and due to my condition wasn’t able to come up with simple words like current and tide after I swam it to shore, not having the strength to get back in because I am not producing cortisol (i.e. no adrenalin). For a wordsmith, not being able to recall simple words is pretty scary.

So my challenge is that I need to fund this work and then make it available at no cost to people who are going through the same experience, because even with insurance, having cancer is very expensive and many people have to sell their homes or spend their life saving to help pay for their treatment or even to travel for treatment if they don’t live in a town where it is available. We had to spend a 5 figure sum to top up the gap for my treatment to date, so I know what it’s like. So I’d like to gift the album / video to the Cancer Society when it is complete.

I’m going to need additional musicians, possibly a backing choir for one of the songs, a videographer, editor and more people to help me. I’m going to need a studio, a sound engineer, a cast of several people and then there’s production and distribution. It’s pretty scary.

I’m keen for advice and help. First of all, where do I go for money? I’m thinking about whether to use New Zealand’s ‘Give a Little’ service. To raise funds because this is a charitable exercise. The finished product will be gifted to the Cancer Society and anyone who can benefit from it for free. There won’t be any profits.

Then I need a bit of a team to help me make this happen. Can you help with advice, or would you like to join the team? I can write the songs and I want to perform them with various artists, but that’s about the limit of my expertise.

So will you help? I need people and I need advice. You can contact me via Twitter Facebook by joining the group Musicians with Cancer and other Maladies, LinkedIn or Email.

 

We all need more kindness in this world


Watching all the solidarity after the London apartment building fire and all the terrorist events that seem to be occurring almost daily, it makes me wonder about what unites us.

We hear statements from leaders about how the adversity makes communities stronger, but it makes me wonder about what we can do to avoid these situations.

Can we make a difference simply by moving some muscles on our face and smiling or greeting strangers as we walk past them?

There seem to be a lot of people who become radicalized possibly because of their general state of mind. We are now hearing about so many people suffering from depression and anxiety, it is even now a significant problem for children in first world schools.

I note how it makes me feel when I make positive contact with strangers on the street, it feels good. A simple act of kindness could make the difference for someone who is feeling stressed, depressed or bitter and could stop them from doing something that could have horrific  consequences for themselves and others.

Smile and say hi to a stranger today.

These are the days and surviving a recession


Within days of a black president being elected as president of America, and a life of protesting against racism, Miriam Makeba has passed away. I pinch myself to check that I’m really living with these experiences and am so grateful to be alive in this era of exciting times, great times and troubled times. I hope that Obama goes on and becomes one of the great presidents, which is a big ask, but it is very necessary.

Meanwhile downunder, Helen Clark has resigned her leadership of the Labour Party having lost the New Zealand election to probably one of the youngest Prime Ministers in our history. To me amongst other things, she represents the Politically Correct which is ironic, because I know she lost many staunch Labour voters in her campaign by trying to make the National Party and John Key in particular look untrustworthy. The TV advertisements at the end of their campaign were all trying to smear John Key instead of focussing on their successes and their future plans, and in my humble opinion, it backfired badly. When you throw mud, some of it stays on your hands and she should have known better. Several people told me that they decided against voting for labour because they didn’t like smear campaigns.

Now we are heading into the biggest recession / depression in living memory. The 30’s and the 80’s will pale in comparison. The depression is a bad thing, but there are different ways of thinking about it and smart people will do well, or at least survive.

Something that has amazed me for some time is how business has teased people, who should know better, to spend money they don’t have on things they don’t need and keep doing it over and over. Retailers and finance companies ought to take some responsibility for what they have done, but many will because their business will dry up. The finance companies will go broke because they loaned money to people that they couldn’t secure and most of the goods had dropped way below their value, the minute they left the showroom.

Banks forgot about their commitment after the 1987 crash. For a while they started looking at people’s ability to pay their mortgages and required that they have at least 20% deposit. Then as property values increased they suddenly decided to finance people with 100% of the loan, figuring that the property values would keep going up and it wouldn’t make any difference. Of course while the mortgages were being paid they were making a tidy profit.

The retailers (including car companies) figured they weren’t taking any risks because it was the finance companies that were lending the money, not them.

Funny really because we often say that instead of employing politicians, who have a short term focus and often little experience in running a business, we should pay a premium and get successful business people to run the biggest business of all, our country. The rational was that in business anyone that went to the board and said, “Whoops I miscalculated and we have half a billion dollars less than we thought”, would be quickly helped into a new career, but it seems business has been doing the same thing and thinking that they can get away with it.

By saturating the market with things they can’t afford (and this hasn’t stopped) with 18 months deferred payment and interest free for another year or so, all they are doing is compounding the crisis. Who wouldn’t be teased into buying a new 42″ LCD widescreen HDTV with freeview built in, especially when the Jones’ have one next door and you don’t have to pay anything for over a year.

So we aren’t just heading into an economic crisis, we are adding fuel to the fire to make the mess even worse and if our government’s are broke, we are walking straight into the arms of the waiting Chinese Government who would be delighted to buy our failing banks and finance companies.

Has everyone taken leave of their senses? Have you taken advantage of a 100% mortgage? Have you bought products on special deals that you wanted but didn’t need? Come on, be honest.

There is potentially an exciting side to this as well. If you were smart and saved money, or invested in assets or property that you could afford and that made sound business sense, you could be looking forward to exciting times. Many of today’s wealthy families made their fortunes in the great depression of the 1930’s. If you were prudent during the boom, you could find yourself on top when the crunch comes, ready to buy into a business or buy some real estate at rock bottom prices and benefit from this situation. Even now it isn’t too late. What are you going to do now?

Christmas is coming. Don’t take that overseas vacation, pay half of the money into your mortgage and have a local holiday. The domestic tourism industry is hurting and you should be able to have a great time enjoying your own back yard. Reduce your debt as quickly as possible and only have debt in things that will increase in value when things come right. I think it’s called delayed gratification.

While this blog is starting to get a good following, I would love to get more readers and encouraging me to keep writing. If you feel that my blog is interesting I would be very grateful if you would vote for me in the category of best blog at the NetGuide Web Awards. Note that the form starts each site with www whereas my blog doesn’t and is of course https://luigicappel.wordpress.com.

Thanks so much for your support:)