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.

 

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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.

How I Chose My Prostate Cancer Treatment AND Got to Remission

I have had feedback from many people that they are reading my blogs about my cancer journey and appreciation for my speaking out, when for many men this is a taboo subject. I really appreciate the feedback. It’s not exactly a comfortable thing to share. There are a couple of things I would appreciate even more. If you think these blogs are useful, please leave a comment or share it with others and if you can find it in your heart to do so, please visit my Relay For Life page. It’s a month away and I am desperately hoping the weather isn’t like it is today!

The biggest win for me has been that I am now up to 20 people who have been motivated by me to get tested for cancer, which is awesome. Prostate cancer does kill people. On Wednesday night I was standing by the window in a stinking hot room at the West Plaza Hotel in Wellington with no air conditioning, looking out at the night sky and hoping it would cool down and watching the Halberg Awards live on TV. 

In the memorial section, there was the face of Steve Sumner how died only a year ago from Prostate Cancer, I thought of a radio personality (I haven’t asked her permission so won’t use her name) who told me her father died from Prostate Cancer because he didn’t get checked until it was too late; and I thought of Paul Holmes who on one TV interview said that he wished he had never known he had cancer, but reading this story, I suspect he changed his mind as he realised how important life and his family were to him.

Anyway, I met with my urologist and my oncologist to discuss my cancer treatment options. They gave me an information pack from the Auckland Cancer Society and whilst being very diligent in trying not to let their biases show, explained a little about the options available to me. I have had a little experience with specialists who are very focused on the particular treatments or therapies they offer, and they should, because they shouldn’t be performing them if they don’t believe in them. But one size doesn’t fit all.

I was given four medical options. I did also try alternatives like Pomi-T for a long time and sea cucumber which tasted horrendous and cost a fortune. They didn’t hurt me, but the tumors kept growing.

1. External Beam Radiation. 8 weeks of radiation, which according to my oncologist has a 95% success rate for people at my level of cancer.
2. Brachytherapy. This is where they insert radioactive isotopes into the prostate and treat it from the inside out.
3. Hormone therapy. This is similar to the treatment they use on sex offenders to reduce their sexual urges, reducing testosterone and increasing female hormones. Testosterone feeds tumors, so less testosterone means less for the cancer to thrive on.
4. Radical Prostatectomy or surgical removal of the prostate gland. As it sounds.

I listened to their arguments for and against. I read the pamphlets. I joined a prostate cancer forum and asked other people who had prostate cancer about their treatments and found that they had all done a lot of research; and uniformly recommended the book Winning the Battle Against Prostate Cancer by Dr Gerald Chodak, which I mentioned and linked to in this blog.

I also went to a prostate cancer support group which was the most depressing thing I’ve ever been to. I appreciate the intent, but what an experience. One man had been told that day that he had less than 6 months to live and he was telling me how he was bewildered and horrified, struggling to comprehend a life of daily exercise, good diet and basically doing everything right and instead of looking forward to retirement in 5 or so years, he wasn’t going to be around for it; and a guy so depleted of testosterone that he had suffered massive weight gain, hot flushes, emotional swings, inability to reach an erection (and the lack of desire to do so with the depression of not having it) and more. I understand the purpose of the group and applaud the Society for providing this service, but it wasn’t for me. It could have just been that I picked the wrong day to attend.

With regard to treatment and side effects I want to reiterate that everyone is different. If you look at the side effects for any drug you take on the packaging or leaflet, most people don’t experience many of the potential effects, but the odd person could have severe reactions. I’m not trying to influence your decision. You need to make it for yourself and decide even how informed you want to be.

External Beam Radiation

As a poker player, 95% odds of success appealed to me. Imagine going into an 8-week poker tournament knowing you had a 95% likelihood of being in the money at the end if you followed instructions!

The center offering the treatment said they were prepared to provide my treatment at 7AM each morning, so I could go to work afterwards and have minimal disruption to my life.

The side effects to consider were:

• Hair loss in the area (not a worry)
• Mild fatigue (about that…)
• Frequent urination, weak stream and burning pain while urinating.
• Possible diarrhea, incontinence, impotence and proctitis.
• Reduced or no seminal fluid with ejaculation

Many of these side effects disappear a year or so after the treatment. Everyone is different.

Brachytherapy

Many of the symptoms are similar to external beam radiation, but instead of 2 months of radiation, it’s a brief surgery where radioactive seeds are implanted and that’s it. A key difference is that the side effects occur fairly soon after the implants have been placed and improve, where the symptoms of external beam occur later. Side effects include:

• Burning pain during urination
• Difficulty passing urine
• Rectal bleeding
• Sexual Dysfucntion
• Urinary Incontinence
• Bowel Incontinence
• Diarrhea
• Having to stay away from pregnant women (what if they don’t know they are pregnant?) and adolescent children.

Hormone Therapy

In the book I mentioned above, Dr Chodak explained that the treatment is more or less the same as what is known as chemical castration, the treatment that is used to stop sex offenders, because one of the primary side effects is that it reduces your libido or sex drive. Great if that means reducing the risk of a criminal reoffending, but not for a normal male, or in fact a normal couple.

• Loss of interest in sex (libido)
• Erectile dysfunction
• Hot flashes
• Loss of bone density and risk of fractures
• Loss of muscle mass
• Weight gain

Radical Prostatectomy

This is surgical removal of the prostate gland. The things that worried me the most were the risk of nerve damage and the potential to never be able to have an erection again as well as a reduction in penis size. Sorry of this is something that you find creepy to read, but it’s amongst the things I had to consider. If I was 70, these things might not be such a big deal, but I’m not and they are. In the USA this surgery is frequently done by a robot, but here it is humans and I don’t care how good the surgeon is, stuff happens, there is a high risk of at least partial nerve damage.

Ignoring infections and other things that can go wrong and potential risk of tumors crossing the enclosure holding the prostate gland in place (also a risk with biopsies and the Brachytherapy), side effects include:

• Urinary incontinence and/or urine leakage which can mean having to wear pads for 1-3 years or longer
• Trouble getting or maintaining an erection, potentially permanent
• Dry orgasms and loss of sensation and pleasure (and the impact of that on your partner)
• Infertility
• Penile shortening
• Bowel Injury

But Wait There’s More

So this is just scratching the surface. I read the book and it literally gave me nightmares. It wasn’t a short book and went into way more detail than what I have shared above. It was very thorough in explaining all of the details of the different surgeries and what factors you should consider based on the severity of the cancer, your age, your lifestyle. It helped me make my decision from a personal and clinical perspective, but I’m not sure I would recommend it. I was pretty upset and stressed out for a long time after reading the book. I can’t even bring myself to go back to it to quote parts of it to you.

My decision

I want to reiterate again that my decision was based on my feelings about the treatments, the people offering the treatments and my personal circumstances, my relationship (of course my wife was also part of the decision making process because it affected both of us), my age (I plan to be working for at least another 10 years), my family and obviously wanting to survive and live a productive and happy life.

I chose external beam radiation for various reasons.

• A 95% success rate is not to be sneezed at (unless you become semi-incontinent!). It’s no laughing matter either as people who have semi-incontinence can attest to.
• My granddaughter was 7 and I didn’t want to lost that special relationship of being able to sit next to her, have her on my knee or miss out on hugs. I was worried that if for her safety, I had to keep my distance that this  might have a long term impact on our relationship. You can’t get that back and she was too young to have been able to understand if I noticeably kept my distance.
• While it would impact on my ability to travel by plane for work, which I was doing 2-3 times a month, I could do some of the treatment over Christmas.
• Doing the treatment at 7 each morning meant that I wouldn’t have to take time off work.
• I wouldn’t have to risk sitting next to someone on a plane with radioactive seeds between my legs. Imagine saying to the airline, I’m flying on Friday. Please don’t seat me next to a child or a pregnant woman. What if the woman doesn’t know she’s pregnant? Okay please don’t seat me next to ANY woman. I wonder how many people do and if any women struggle with fertility as a consequence of having randomly sat next to someone on a plane or at a concert. I wasn’t going to have that risk on my conscience.
• The side effects seemed to be the least severe of the 4 options.

“I’m sorry, but you’re not in the 95%”

Unfortunately after 2 months of radiation treatment, when I had a series of scans to see how it went, the treatment was unsuccessful. I was in the 5% of people for whom it didn’t work.

I got many of the side effects, some very severe, but the cancer was still there. I may write about the year during and after the treatment for anyone that wants more insight into what it was like. From drinking a bottle of water every morning on the way to Mercy Hospital so that my full bladder would push my internal organs out of the way during the radiation treatment, being afraid that I couldn’t hold it, the painful urination, the loss of libido and erectile dysfunction, a feeling of loss of dignity, chronic fatigue, depression, needing to stay close to a toilet and on the other side, meeting some wonderful people, both fellow patients and those who helped me with treatment of my body and mind.

Another Choice

So then I had 3 more options. Brachytherapy wasn’t much of a choice given the radiation had already failed, so I had to go to hormone treatment, given I do not want the surgery.

This treatment was just pills, nothing more. I had side effects and continue to have some lingering effects. I had to make use of the counselling from a psychologist at the Cancer Society.

The end result was about 7 months ago my Oncologist said “You are in remission”. I had to ask what that means, because sometimes people talk about being cancer free. There is no such thing, but you can be in remission for years or decades.

This is important because I frequently read or hear stories about people being cured of cancer. As I understand it, there is no such thing. We all have cancer cells, they may be dormant or managed, either with treatment, diet or our immune system, but you do not get cured.

I am now on 3 monthly visits and in January had my 3rd one where my oncologist said my testosterone levels are good, my cortisol levels are lower than we would like, but I am producing some, I am still barely producing adrenaline, but my PSA levels are low and stable. I don’t have to go back for another 2 months.

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.

I’m in remission. I am focused on Relay For Life. Check out our Team Early Birds singlet. The 18 for 2018 is made up of the names of the people we are walking for over 18 hours. We are raising funds for the Cancer Society who do amazing work. They don’t take any money out of it for admin or running the society. It goes to research and supporting services like the psychologist who helped me and accomodation for people who have to travel a long way from home for their treatment. I’m on a mission to get people like you to donate $5 to this wonderful cause. Think of it as a koha for the time I spent writing this blog.

For those who are facing decisions like mine. I’m happy to answer questions and I will probably share more details of what it was like physically and emotionally to go on this journey.

In the meantime, I’m working on recording my EP of 4 songs called The Cancer Diaries. I am struggling with the rhythm guitar for the second demo, called Who Stole My Words and may need to call on one of the guitarists who offered to help me with this album to lay down a track for me. I hate asking for help but I need some with this.

I hope this has been informative and not an uncomfortable read. It is an uncomfortable condition as is any cancer and I hope that this blog is helpful. I hope that I can increase the number of people who get tested early beyond 20. I hope you will leave a comment, question, share, or make a little donation to Relay For Life.

 

 

 

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.

 

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.