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.

 

 

 

 

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.

Two More Sleeps Before Relay For Life

Two more sleeps and I’ll be getting up on Saturday morning to, pack and head off to the Millenium Centre in Mairangi Bay, with my old runners and my new Thorlo padded socks, hoping the weather man is right and it won’t rain.

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

I don’t do this for myself (well maybe a little). I do it for the 1 in 3 people in New Zealand, who, like I did, will get cancer. I do it for HOPE.

First of all I want to thank you all for your kind donations, for your words of encouragement, for sharing your stories of cancer, both personal and members of your family or friends, some who lost the fight to cancer and others who are still fighting the battle.

This has been the hardest year for me to fundraise for the Cancer Society, I’ve felt like most people are over donating and wonder if it is because I have been doing this every year for 6 out of 7 years. I’ve stuck with it because cancer is so insidious, so horrible, and to raise awareness that we don’t all have to die from it.

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.

I do it because of the 20 people who were motivated to get themselves tested because of my story. That’s what Team Early Birds is about.

At the height of my cancer journey I didn’t have the strength to do this event. I visited the team two years ago and went home to sleep at about 3 in the afternoon and felt so frustrated that I wasn’t able to participate! Last year, I still didn’t have the energy to stay right through the night. I left at 10PM and started again at 4AM.

This year I’m back in boots and all, no matter what it takes. I’ve taken 2 days of annual leave to let my body recover. I’m looking forward to the survivor’s lap of honour where those of us who are surviving cancer do the first lap, wearing a purple sash.

It is such an honor to do this and very humbling when kids you’ve never met before come up to you and tell you they are proud of you, that you inspire them. Some wear shirts with words like I MISS YOU MUM on their backs.

I’ll tweet a few updates from the event if you want to stay in touch and might do a Facebook Live post, but I will be conserving the battery on my mobile so it lasts through the night.

So again, a huge thanks to those of you who have supported me on this Relay For Life journey. I am very grateful and feel very fortunate that there are people who have my back. That’s what kept me going through my darkest days.

Now if you have any influence over the weather, I really don’t want to do this event in the rain again. Can we hold off until after the weekend?

What’s It Like to Have Prostate Cancer Radiation Treatment, a Bursting Bladder AND What Does that Have To Do With the Price of a Cup of Coffee?

I chose radiation treatment for my prostate cancer because it allowed me to continue to work and because it has a 95% success rate.

On the first visit to the clinic with my wife, we were waiting in the lounge to have the process explained to us and for me to have a CT scan so that they knew the shape of my body. This was so that every time over the 8 weeks of my treatment they would be able to focus the radiation on the specific area to be nuked and minimise the risk of damaging my bodily organs.

My wife and I were sitting in the waiting room when a man rushed pass at a frantic pace, loosening his belt as he ran for the bathroom in a cold sweat. He was in so much of a hurry that he was sitting on the toilet before he had even got the door shut.

One of the things you can lose in this process is your modesty. I wouldn’t ever want to be that guy, when all the heads turn in his direction, embarrassed for him, turning away again as he comes out, hoping he didn’t see them.

The process is that roughly 45 minutes before you have your radiation  treatment you need to have drunk enough water to have a full bladder when you have your therapy. The reason is that this helps push your organs away from the prostate treatment area, thereby protecting them from harmful rays.

I was lucky because I was often able to get the first appointment of the day, meaning that on those days I didn’t have to wait in the lounge with my full to bursting bladder for too long.

So you arrive at the hospital and check in with your calendar schedule and they ask you how you’re doing. I always had a stock answer whenever anyone asked how I was, which was “GREAT!”, with a big smile. Here they would say, “Actually how are you really doing, because when you are having radiation treatment, we actually need to to know?” That was a mindshift for me and there were times when I felt a bit sorry for myself and when other people asked how I was, I told them as well. I wish I hadn’t, but then they did ask right?

Contains the robes we wore when undergoing radiation treatment

So the next thing you do is go downstairs to a changing room where you collect your yellow daffodil bag which contains your lava lava which you will wear for the next wee while, holding on to the water in your bladder. Your clothes go into the bag and you put it back on the shelf with the others, realising just how many people are currently getting radiation treatment like yourself. It’s all sorts of cancers of course, not just prostate.

I met some great people while waiting for my treatment, both patients and their partners and we shared battle stories. Often the partner was feeling more stressed than the patient. I met people who were from out of town who had to stay at Domain Lodge, a facility provided free by the Auckland Cancer Society for cancer patients because the distance was too far to travel each day. This had all sorts of consequences. Children still had to be looked after, bills still had to be paid and some of them were running their own business and typically the treatment was every day during the working week. This is one of the reasons why I am a staunch supporter of Relay For Life which is next weekend, the 10th overnight through to the 11th of March at the Millenium Sorts Institute on Auckland’s North Shore.

So it comes your turn and you adjust your lava lava so it won’t fall off and wander down the corridor, past the control room where they are going to watch you on camera, put your valuables on a chair. Then you lie gingerly down on the scanner bed, hoping you can hold your water. 

The friendly staff chat away with you and each other as you get settled, with your head under the scanner and your legs on a pair of moulded supports. They put a pillow under your knees and you focus on your bladder.

Then they adjust your lava lava and with a pen of some sort draw a mark at the point where the radiation will centre, which becomes less embarrassing after the 20th time; and they leave the room. Then the noise starts up and they talk to you through headphones as the treatment begins. It only takes a few minutes and as it finishes, you thank them and rush for the bathroom to empty your bursting bladder as quickly as you can as they tell you how well you have done once again.

Sometimes you have to wait longer than your booking time and it can get pretty uncomfortable. One morning they had to do maintenance on one of the scanners and I had to wait so long that I had to go to the bathroom, empty my bladder and then drink another bottle of water and wait the best part of an hour for my already stretched bladder to fill up again.

The worst day was when someone before me arrived late and I had to wait over half an hour longer than usual before I got my turn. They said if I wanted to I could empty my bladder and start again, but I had to go to a meeting at work and I didn’t want to be at the hospital any longer than I had to. So I gripped on to the edges of my chair, tightened and loosened, tightened and loosened (not a typo) my core muscles focussing on not losing control of my bladder.

I came very close to having to rush to the bathroom several times, but I didn’t want to blow my perfect record. My pride rode to my rescue.

The pain and pressure was getting worse and I persisted. Nurses came to me a few times and asked me if I wanted to start again, pointing to a nearby water fountain (not the imagery you want at that time but well meaning). I replied that I would soldier on.

Eventually after about an hour I got my turn and barely adjusting my lava lava, just acknowledging to myself that by the time I got to the room, it might be unraveling from my body, I waddled to the machine and gingerly got onboard, hoping for everything I was worth, that I could hold it in.

We got settled and barely aware of the daily x (actually a little line) marks the spot being drawn by the nurse just above my privates. I just focused all my energy on my now very full bladder which was telling me that I wasn’t responding to the messages it was sending me. I was determined to hold it in, but it was getting more difficult by the minute and I was just wishing they could speed it up. Time seemed to go into slow motion, but the discomfort got worse.

Finally the nurses left the room and I lay there pulling up on my core muscles for all I was worth, cringing with the pain and being told through my headphones that I needed to keep still. “Easy for you to say I thought”.

No, I needed to pee and I needed to not pee and I needed to hold those muscles in. What if wet myself? What if I peed on the machine bed? I still had a little dignity and I remembered that guy, rushing for the bathroom on my first induction visit.

I almost got off the machine 3 or 4 times, but I hung in there. Then the radiation treatment started and amidst the din of he rotors, I thought to myself, “I just can’t hold on anymore, I have to get off!” Then realisation set in, as I was being reminded to keep still, that if I got off while the radiation was beaming at me, I could potentially damage other parts of my body.

I clung on for dear life, cringing, counting the seconds, trying to keep still and then after the machine stopped, I was halfway off the bed as the nurses were coming back and there I was.

Now I was the guy rushing for the bathroom for all I was worth, not bothering to waste time locking the door, letting the lava lava unravel to the floor as I dived for the toilet. Oh the relief through the pain!

I picked up my body with my bruised dignity, got changed, went to the bathroom again and finally walked up the stairs to the nurses station to get a smiley face on my monthly chart, to say I had my treatment for the day. 

This had been one of the days that I was hoping would never happen to me, but they did tell me that we all go through it.

Eventually after 8 weeks I had completed my treatment and eagerly awaited my visit to the oncologist who I anticipated would have good news for me.

Unfortunately he didn’t. He said that while 95% of people respond well to the treatment and find themselves in remission, I was in the 5% who didn’t.

So after 2 months of drinking water, driving each morning to treatment and then off to work, I was no better off than I had been before I started. That was a bit of a body blow and whilst I understand statistics, I had thought about the odds and as a keen poker player had thought to myself that if I had gone into a casino for a tournament and been told that I had a 95% chance of being in the money at the final table, I would have been really excited. The 5% seemed really unlikely.

The Coffee

After each radiation treatment I would go into the hospital cafe and treat myself to a flat white and a huge cheese scone. I couldn’t have breakfast before the treatment, so this was my little reward to myself and I came to look forward to it. When I went back to the hospital for specialist appointments I usually went back to the cafe for nostalgia’s sake, but it never had the same satisfaction as it did on the days I had radiation treatment. 

So here’s where the coffee comes in. A cup of good coffee costs around $5. Coincidentally, that is the level where a donation to Relay For Life becomes tax deductible. That means your $5 donation only really costs you around $3.50. That’s peanuts right? But what if all my readers gave that?

I was going to say, if you know anyone who has cancer, how about making a small donation in their honor, but you know me don’t you? You now know me better than you did before, because I have shared some very personal experiences with you.

Next weekend when I spend the night walking around the track at Relay For Life with my friends and family, I am doing so to help raise funds for the Cancer Society to help fellow cancer patients with accommodation, psychological help, research and much more. It is all rather meaningless if I don’t get donations and I haven’t even got a third of my modest target so far.

So here is my plea. Can you find it in your heart to make a $5 donation for a good cause? 1 in 3 Kiwis will get cancer. I hope that will never be you, but it will probably be someone you care about. Will you please help? I would be so grateful.

This guy must have been really hot. The purple sash denotes being a cancer patient and survivor

It’s been a real struggle this year to get donations. So I really thank you for paying it forward and also am very grateful to my friends and family who are in Team Early Birds, relaying for 18 hours to support me and also people who they have lost or are still fighting the good fight.

 

What Cancer Patients Really Think When You Tell Them “You’re Looking Well” AND 4 Reasons I Need Your Help for Relay For Life

Contains the robes we wore when undergoing radiation treatment

Four of the people who have supported me in my cancer journey were  worse off than me. There was Shelley, who had a fall 2 weeks ago and we had her funeral on Saturday. They had said she had maybe a couple of months, but it spread faster than expected to her spine and brain. Then there is another Shelley who has to have chemo every 3 weeks for the rest of her life. Because she chose a low cost insurance policy (who thinks you’re going to get cancer?) she had to sell her house to get quick treatment to save her life. There is Lee, my colleague and friend who is still fighting. Finally there is my great friend of over 30 years, Daff, who we buried in December, right before Christmas.

I wrote this song about our shared experiences. Things that cancer patients say to each other and to the medical people who support them. Relay For Life helps people like us. Can you?

Isn’t it Ironic

©Luigi Cappel 2017

Verse One

When I’m down on the ground
Where do I go from here
I’m feeling flat, well fancy that
I’m feeling sorry for myself

Pre Chorus

I ought to feel ashamed
I get another day
Others aren’t so lucky

Chorus

But my friend says
In the morning, I put on my face
Wipe away my tears
You don’t see me then

Verse Two

I need to fight with all my might
Put on a happy face
Take off that frown, bringing others down
Impact my fate

Pre Chorus

Isn’t it ironic
The people you use as a tonic
Are worse off than you

Chorus

But my friend says
In the morning, I put on my face
Wipe away my tears
You don’t see me then
I’ve trained myself, sometimes it works
I paint a picture, that hides the hurt

People used to say to us “You’re looking well!” They were trying to pep us up and when I was depressed and fatigued (I didn’t think of it as that, just frustrated) I’d start my day looking in the mirror and say I’m alive and well and I feel great and try to get some endorphins going with a big fake smile. As you know, I shave my head. The other four all lost their hair. They were all struggling emotionally with that but they kept brave faces.

Read the last chorus and this will tell you what is really going on.

Out of 13 countries, New Zealand has the lowest ranking for access to cancer medicines. Relay For Life is working to help that and the Cancer Society who helped us all doesn’t get Government funding. Do you reckon you could donate $1 for each of my friends and myself, to go to the Cancer Society? That would be $5. That could make a real difference, truly. You can do it here.

Thanks for coming a little way into our journey. I will be walking all through the night for them and dozens more in two weeks time, with your support for which my gratitude.

 

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.

On Homelessness, Being Trustworthy and the SuperBowl

Yesterday I had a day off between two holidays. I was going to go for a Fly Your Own Scenic Flight in a Cessna 162 at Ardmore, but the weather looked a bit dodgy and my car got trailered to an auto electrician in Pt Chevalier at lunchtime on Friday who said he was going to check the diagnostics and let me know why the engine lights kept coming up. Ardmore is an hour from here so a long drive with a high risk of rain.

I rang them 3 times after that and they said he was really busy and would call me back. I’ve been ringing ever since and I think he’s taken the long weekend off. It’s now Tuesday. We’ll come back to trustworthiness again later. This guy has been trustworthy before and was recommended by the man I bought my car off as an expert in Corvette’s. He didn’t let me down the other time I went to him. I suspect he is the sort of person that takes on more than he can handle and that frustrates his manager who in the end wouldn’t let me speak to him. So I’m not sure how I’m getting to work tomorrow or when I will see my car next. I think the thing about trustworthiness is it must be pervasive and consistent. It wasn’t.

Anyway, the weather improved a bit and I borrowed a car off my daughter and went into town to visit my friend and your Giapo for a chat.

I parked at Sky City, because it was free courtesy of a couple of poker matches and walked down Queen Street, where in almost every doorway sat someone with a hat out, not making eye contact, mostly no note and a vacant drug stare in their eyes, not the “I can feel it coming in the night” rush I saw on Louis Theroux’s Dark State – Heroin Town on TV recently, this was more like everyone was isolated in the same bad trip.

I had about $18 in coins in my pocket, planning to give some to buskers if they were making an effort, given that I had done some busking in my teens and I respect people who are prepared to make some sort of a trade for value.

Then I walked past this white guy, (his term) in a tidy shirt, clear drugless blue eyes and a hat in front of him with a lonely silver coin looking up at me from it. I turned around and walked back. I asked him if we could chat and if I could ask him a few questions. He looked me straight in the eye, blue eyes to blue eyes and said “Sure, I’m not going anywhere. What do you want to ask me?”

I said “I don’t want to offend you, but how did it come to this?”

He told me that a couple of years earlier he had been working as a labourer, had an accident which left him unconscious in hospital with severe injuries, to the point that he could no longer work when he got out after a couple of months. He couldn’t earn money (still can’t because of tremors and the scars looked pretty real where his hand appeared to have been pulverised). He and his wife lost their State House and then he lost his wife and kids.

With nowhere to go he now lives in a street doorway in downtown Auckland, except when he can find the $10 to get into an Internet Cafe where they don’t mind if you sleep in the night.

I asked what he could do and he said he didn’t know. His body didn’t give him much of a chance to get work and therefore a room and the only work he had been offered was with the gangs and he said “You know where that would end up. Back in jail and I aint ever going back there.” I didn’t ask what he had been inside for but he said it was about 24 years ago. He told me how he had survived by studying on behalf of inmates who were trying to get qualifications and explained how they would arrange it so that at exam time, the guards would let him go in and sit the tests on behalf of inmates that would have failed. He was very bright. He helped them and got to use his mind and they left him alone and safe.

It was clear that he couldn’t do physical labour, but he is 51 by his reckoning and the only way off the street is to work. Without a street address, he couldn’t get a benefit or his first hand on the rung to get out. He told me a lot of stories and he did have a good head on him so I asked if he had done any public speaking. He said he had been a member of Toastmasters while he was in jail. He found public speaking pretty easy and I thought of people I know who tread the circuit and thought he could probably hold an audience with his experiences. I said to him that the chances I could help him were pretty close to zero and not to get his hopes up, but I would ask some questions and I shall.

I dropped the change I was planning on giving to buskers into his hat and with a big grin he said “I’ll be staying in the Internet Cafe tonight.” He went on to say that he had to stash the money because if street kids saw any money in the hat they would run past and snatch it. He said he had been through 7 hats already that they had stolen.

I shook his hand and went on to visit my friend Giapo in his awesome new gelato shop.

This was my first visit to the new store (I know it has been there a while) and there was one thing that never changes. There is always a queue of people waiting for their Giapo gelato experience.

If you haven’t been to his new store in Gore Street, Auckland City, you owe yourself a treat.

This is no ordinary store where they wet an aluminium  scoop in a container of water and drag some ice cream into a cone from the cardboard tub of your preference.

You are purchasing a culinary experience the equal of what you would get from the kitchen of a master chef. You will be taken on a journey of testing and trying flavours, even while you are standing in the queue Eventually a unique visual and sensual experience will be delighting you and your friends, while you are looking at and consuming it, followed by the sensation that you are sated and satisfied and looking forward to recommending it, the experience, to your friends. This is no drive to Pokeno for an ice cream, this is theatre for the eyes and taste buds.

Giapo and I have wonderful conversations and it was also great to finally meet his amazing and beautiful wife in person. I loved that she gave me a firm handshake and looked me in the eye, I don’t like limp handshakes from anyone. I know these last years have been a big journey for her also. Behind every consummate dreamer is their best friend and partner and without her the stumbling blocks are that much higher. We deep thinkers need a leveler and someone to sometimes ask how and why and finally, “how can I help?”

Giapo is an economist, a mad scientist, a gastronome, a master chef, a 3D printer, a social media maven from way back, a purveyor of experience, an artist and a man who speaks with absolute passion and Italian gestures, from a big heart, who wants to leave a legacy of experiences bound by trustworthiness for himself and his business; and a secure income for staff who want to use his business as a stepping stone for his own career.

We have many experiences in common, including both being deep thinkers and the visit left me with lots of thoughts and questions about what a trustworthy business looks like. The simple answer is that he was going to take many years to build it and would find out as it developed. But I can say that trustworthiness for Giapo includes:

• Consistently delivering a quality experience that is like going to theatre for the eyes and taste buds. I have never seen anyone leave disappointed;
• Passion for delivering something of quality including his relationships with staff and the products.
• Passion for his staff and helping them make what they will from the work experience and wishing he could do more with and for them.
• Helping his staff develop ideas, for example he runs Chef’s Table gelato degustation evenings and VIP evenings (they were set up for one when I was there) which includes matching music to the course, something one of his students is studying.
• Having a genuine passion and compassion for his customers (and friends) that never wavers, Giapo is who and what he is, not someone living a persona.
• Making sure that he looks after himself, his health and fitness so that he can be well in order to run his business to deliver the trustworthiness he aspires to.
• Recognising the importance of family, that includes those of his customers (friends like me and my family) and of course his own, those here and those back home in Italy.

There is something I deeply admire in people like Giapo. There is a sincerity and depth of purpose that he strives for every day, rain or shine, winter (not the best time for gelato) or summer, year on year.

It is a desire to be the best and continue to push the boundaries of what that means, each and every day and he has now done that for years past the use by date at which 80% of businesses go broke. He has proven that it is sustainable.

I’m not saying it has been easy. It’s tough when you are creating a unique business with a unique set of values and direction. Where ultimately you want your business to conform to a set of ideals. Where, if you consistently over-deliver on your promise of a wonderful experience and people trust you that if they tell their friends how great it was, they will confidently wish that same experience for their friends.

Like fractals, (something Giapo used to tell me about years ago, that branch out like pretty ice crystal flowers) customers all over the world would say “If you go to Auckland, New Zealand, you really have to go to Giapo in Gore Street. It will be a highlight of your trip.”

Anyway, enough of that, it’s a beautiful day, go and visit Giapo and let him know I sent you.

On the way back to Sky City to pick up the car I borrowed, I walked past a noisy bar with an American flag outside. It sounded like there was a show on, so I walked a bit closer to see what was happening. Yep, you got it, Super Bowl 2018. I’m not sure whether the audience was that worried about whether the Eagles one. Heck, I’ve only ever changed planes at the airport there on my way to or from Ithaca NY, but we love our sport in Auckland and despite the showers, it was a great day for sitting in a bar watching sport on TV.

Off I went home to do my thing, working on recording my second track for The Cancer Diaries, my charity music EP and Music Videos for cancer patients and their supporters, a bit of writing on the two books I am working on and pondering with my wife on the nature of trustworthiness as a pillar foundation for a business.

I have 2 questions for you:

What does trustworthiness mean to you in business? ; and

Have you been to Giapo yet. Looks like a great day for it today.