In My Room

There’s a Chance that we Might Fall Apart Before Too Long

When I was 9, our family went through a tough time. I believe it started with my mother feeling highly stressed, and it subsequently transpired that there was a good reason for it, but nobody knew that at the time.

We were living in Scenic Drive, in Titirangi. It was a great place to live, nestled in the west Auckland rainforest, with wonderful views of Auckland. I have some good memories from my time there, but also some very dark ones. This was a pivotal time for me which would impact me for the rest of my life.

The Beatles had hits throughout my childhood. In the year this took place, 1966 they were singing “We Can Work It Out.” The lyrics seemed to tell our story pretty well.

“Life is very short, and there’s no time
For fussing and fighting, my friend…..

There’s a chance that we might fall apart before too long”

My mother wasn’t well. She was suffering from feelings she didn’t understand and she didn’t feel right. She went to the doctor many times and was told that she was suffering from depression and he prescribed drugs like valium for her, to calm her nerves.

She didn’t agree with him, but he was the doctor, an arrogant one at that, and in those days you did what the doctor said. There was no Dr Google, and the GP was considered an authority on all things body and spirit.

It was perhaps the beginning of the age of The Passionless People, where tranquilisers and antidepressants were dispensed to New Zealanders by the handful. According to Gordon McLauchlan, we were one of the most drugged-up nations on the planet.

Things got worse at home, and my parents argued a lot. I remember nightly raised voices, thuds resounding through the wall, and the drywall-dampened sound of my mother crying from behind their bedroom door. I felt terrible. Sometimes I would try to listen at the door, but I didn’t like what I heard and I felt helpless and very insecure.

These fights went on for hours and of course, it affected me pretty severely. Eventually, my father moved out to a batch at Titirangi Beach that had previously been the home of family friends.

Ironically the batch was one of the shelters where I stayed with those family friends some weekends when the stress got too much for me. They were very bright, kind, and interesting people. He was an American draft dodger, who left the country to avoid being sent to kill people in Vietnam. I enjoyed spending time with them.

Dick was a genuine pacifist and one of many people the FBI decided to make an example of in the 1960s. They followed him from California to New Zealand and were determined to arrest him and either convince him to serve in Vietnam or send him to jail.

They found out where they were living, and he and his wife quietly left New Zealand, making their next home in a remote village in India for some years. My father told me that the FBI had visited him, demanding to know where our friends were, and told him that he was now on the watch list for assisting a ‘criminal’. The FBI continued unsuccessfully to hunt for Dick and didn’t give up until America ended their war on the Viet Cong. Periodically my father would get phone calls from the FBI asking if he knew where they could be found. He had no interest in helping them.

Often I was left as a 9-year-old, with a brother of 3, sisters of 2 and 1 to babysit, on some afternoons, when my mother was at work. Sometimes there would even be another 2-year-old from a solo mum that my mother had offered to look after, forgetting that she wouldn’t be home at the time. She couldn’t say no because we needed the money she gave her to look after her child.

I remember one day when I was driven to despair. I was on my own with 4 kids. 3 of them were busy filling potties in a row. One of them stood up and the potty stuck to their backside. Then it dropped to the floor, tipping urine onto the carpet. I must have yelled out with anger and frustration. The kids got a fright and like a domino effect, they all toppled, tipping over their do’s onto the carpet, looking at me and crying. It would have scored well on America’s Funniest Home Videos, but it wasn’t funny to us, especially me. I had to restore calm as well as clean up the mess!

The Beach Boys song couldn’t describe my situation better. My parents were in the process of breaking up. Life was very stressful. My security and sense of home had become a place I needed to escape from, to find some sense of peace.

I don’t know how it came about, but I started staying with different people for 3-4 weeks at a time to give me a chance to get away from the terse environment. One couple who kindly took me in was Peter and Manuela Hill.

One of my regrets is that as an adult, I never went back to thank them for providing me with a safe haven.

I spent a lot of time in their home, just sitting on my mattress on the floor, in their spare bedroom reading and listening to records. Peter was a radio DJ at 1ZB and had so many great records. I still have a few of them. One of them was a Beach Boys album and one of the tracks that expressed where I was at, was In My Room.

“In this world, I lock away my troubles and my fears.”

“Now it’s dark and I’m alone

But I won’t be afraid

In my room

In my room”

This was where I first read The Hobbit and the Lord of the Rings trilogy. I was 10 and the 4 books afforded me hours of escape. I was Frodo and Bilbo Baggins.

When I was in Form 3 at Kelston Boys High a few years later, the Hobbit was one of the books we had to read. I was more than happy with that. I still have my school copy of the book. One of my treasures, ironically from another place that I didn’t want to be, but more of that later.

It was amazing when the movies came out, because Peter Jackson and crew did such an amazing job, because the scenery in the films was very much as I imagined it, sitting or lying on the mattress on the floor, engrossed in the big adventures.

This year I had the pleasure of visiting the movie set of Hobbiton, which was a wonderful experience. If you ever get to New Zealand, I strongly recommend this as a great tourist attraction, and if you are a Kiwi and you haven’t been yet, we have a long hot summer coming and the complimentary fine cold ale went down a treat at the Green Dragon.

Peter also kindly gave me some records to take ‘home’ with me after my last stay. The Beach Boys album was one of them. He also gave me some treasures, 78s including Little Richard’s Tutti Frutti and George Formby, I’m the husband of the wife of Mrs Wu, which I performed at the Titirangi Folk Club on the mandolin banjo. I learned that instrument when my fingers were too small for the guitar. Later I would play mandolin, tea-chest bass and guitar in a jug band.

Kind of funny because I barely understood that the song, which was banned from radio, was fairly suggestive. “In the market square of things I bought a few, they tried to sell me silk pyjamas too, I said I might admire them, but don’t think that I’ll require them. I’m the husband of the wife of Mr Wu.” I loved playing the strummed solo on the mandolin banjo.

Eventually, my mother’s stomach started getting bigger and bigger. It transpired that all this time during which she complained that there was something not right with her, and the GP fed her more and more drugs, there actually was, and her body had been trying to tell her. After a couple of years, she went to the hospital and they operated on her, removing a huge tumour. Fortunately, it was benign. She hadn’t needed drugs at all, she needed a good diagnosis! If the GP had made the effort to look beyond prescribing tranquilisers our future lives would have been very different.

Would you like to read more stories like this? There are many more coming, so you might want to subscribe, and please feel free to leave comments. Was there something that resonated with you?

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.

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.

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.

Are You Ready for Cyclone Gita?

I remember standing on the back of a truck in my muddy Leo’s on a beautiful sunny day on the side of the road with a couple of cops and a couple of fellow trained Civil Defense Rescue people.

As I looked out over the Riwaka farmland, all I could see was river silt that was glittering with specs of gold in the sunshine. I remember thinking if there was a way of using a magnet to suck up all the gold dust that had flooded down the river and over the banks, inundating the house we had just emptied of muddy furniture, I could be wealthy. It was stunning and it was devastating.

Two days earlier it was a different story. I had been standing next to the house I was staying in, getting drenched in torrential rain on a hill overlooking a farm which was under at least 2 meters of water. The road next to my house had become a river. I wanted to go down to the farm to help the people whose homes were underwater try to recover their precious belongings. Unfortunately the torrent on the road was such that there was no way I could safely cross it. This was evidenced by an elderly person who drowned that morning trying to cross the road and lost their footing. I felt helpless, pacing up and down the hill trying to find a safe way across.

Other than losing all their furniture, all their food, all their photos and memories of good times gone by, their clothes, their cars and other material things (and their crops), the families on the farm were OK. They were hardy souls, a bit like the West Coasters. However, not everyone was the same.

On that sunny day and for a week afterwards, we worked tirelessly emptying muddy carpets (after digging 20 or 30cm of silt from them), furniture, bedding, appliances, food and other items. We tried to tell the residents to count their blessings, that they were still OK, which was easy to do with my own possessions being high and dry.

Many of them were devastated, some in shock and some just grateful that we were there to help them. None of them had expected the storm and the river to sweep right through their homes.

Cyclone Gita might come to nothing major, or it might become a serious storm. It’s great to see some people getting ready, keeping kids home from school, staying home from work if they don’t need to be there. It is also crazy to read about people still going to campgrounds in at risk areas. They obviously haven’t got first hand experience and what would be really frustrating would be if those people then need rescuing at the cost of looking after people who have taken reasonable step to make themselves and their properties safe.

Having been one of the rescuers in the past, I’d like to spare a thought to all the road crews, the linesmen, the emergency services and others who will be out selflessly in the wet (maybe even cold in some places), when they could be protecting their own families and properties. Where would we be without the ‘trained’ volunteers as well as the locals who just pitch in and do what is needed?

I hope everyone gets through this safely. That they have stocked up on all the essentials and are ready for the storm. Here’s what you need to know to prepare for Gita.

Finally I remember going to the local pub and having a beer with the locals. It was cool to see how the community rallied together and became stronger after the event. And I remember the gold flecks for miles, glittering in the sun as if there had never been a storm and the ground had always been flat and covered in silt.

 

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.

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

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.

Can 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.

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

Basically 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.

The 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.

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.

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.

Prostate Cancer. No Pressure. Need Help for Relay For Life 2018.

So when my GP told me that my PSA levels had increased every test over the last couple of years when they should fluctuate, he said there was a risk that I might have cancer. He told me to lie up on the bed in his surgery, pull my pants down and my legs up and before I had a chance to ask, “is this necessary?”, his gloved finger went where the sun don’t shine. To say that it was unpleasant was an understatement, but I barely had time to feel embarrassed.

We wasted no time in making an appointment with a urologist and off I reluctantly went. I’m not sure what I was dreading most, being told I had cancer (If I did) or having yet more insult and injury to my dignity.

A sign on the track at Relay For Life

He was a very nice, gentleman who explained to me what was going to next and asked if I had any questions. I was feeling pretty much in shock and bewildered and was barely taking in what he said.

He asked me what my flow pressure was like when I peed. I thought it was OK most of the time. They told me on the phone that I had to arrive with a full bladder for a urine pressure test, so I was ready to relieve the pressure.

I had to pee in a basin that had a sensor in it and I thought I did pretty well, as he stood in the next room, watching the gauge. He then burst my bubble and said that my flow was well below average and asked, would I like a script for something that would make it flow faster.

I declined. Up on the bed and he started prodding my stomach and then asked me to pull my pants off, lie on my side with my knees hard up against my chest.

Now dear reader, you may be feeling squeamish, you might be feeling embarrassed, you might be thinking, I’m pulling out of this story.

You might be thinking, why is he telling me this? Is it necessary?

No it isn’t, but I want your help and if I get some donations for our next Relay for Life, I won’t share the next step with you and I won’t tell you graphically how I felt.

People ask why I share my story. I’ll tell you why. All around me people are either battling or losing the fight to cancer. One in 3 people in New Zealand will get cancer and we have to do something about it. We can do something about it. The numbers are pretty similar in the western world.

Relay For Life isn’t just for raising money for cancer research, it is about remembering the people we love, work with, our friends and family who are affected by cancer. It is as much a celebration of life as a sharing of loss.

We walk for 18 hours in relay, and the number 18 on our singlets if you zoom in, you will see it is made up of the names the 13 of us are walking for. Some have passed away in the last few months, some are battling, some have been gone for some time and some are in remission like me.

When you walk around the track and you see an 11 year old in front of you and on the back of his shirt it says ‘I miss you Mummy’, you know why you are there.

So to stop me sharing the rest of this visit to the urologist, how about going to the Relay For Life website here and making a small donation. $5 is tax deductible if you are in New Zealand and it would mean a lot to me to have your support. If you’re overseas, maybe you won’t get a tax rebate for it, but I’d still be very grateful if you could share the cost of a coffee.

These are the bags we put our clothes in, when we go in for radiation treatment. Each one of these bags represents a person being treated for cancer at any given time, just in this clinic

I hate asking for money, but it isn’t for me. It may will help you or someone you care about. Remember that number. 1 person in 3 in New Zealand will get cancer at some stage in their lives. Draw up a little list of people in your family and then separate one third of the names on that list. Imagine if those people got cancer. This is personal folks.

This year Relay is on the 10th and 11th of March. We got through the night to symbolise the cancer journey. You don’t have to walk the whole time, it’s a relay, but many of us like to do as much as we feel able. Our team is quite small this year. So far only 13 people. If you feel you would like to join us please head to the Team Early Birds page and let me or one of the team know.

Will you join us in person or in your thoughts?

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

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.

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.