Blogfade and a Back Injury


Have you missed me? I’ve been off the grid, after trying to be superman and  lift a heavy bag of tent poles out of a trailer for a 4 room tent at Relay For Life and following that up a couple of weeks later mowing wet lawns (Auckland right?), piling up the clippings into a barrow and then lifting them to head height to empty into a garden bag, the straw that broke the Cappel’s back.

MRI Result? 3 bulging discs on both sides of my lower spine, all touching nerves and causing me lots of pain in my back and legs. I had 3 (starting very early in the morning) day trips to hospital when the pain was at 9/10, each time they kindly shoved a finger where the sun don’t shine to check that it still had muscle control, because my left leg is very weak and I had no sensation surrounding my left knee and referred pain down both legs. Or maybe they did it to scare me into not coming back:)

I thought I was over that one with my prostate cancer which has been in remission for just over a year now!

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It was a real eye opener sitting in the triage rooms and seeing how awesome the staff are, dealing with a constant stream of frightened, sick and sore patients. My hats off to the staff (and the volunteers who fed me) at North Shore Hospital.

So I’ve been popping morphine and other drugs, (off work for almost 2 months on ACC) to the point where my brain has been mush. It only hurts when I stand, walk, lie down with a pillow between my legs (for more than 4 hours) or sit (only on a wheat bag on a straight kitchen chair with another bag on my back as I look longingly at the couch). I can’t drive and my decision making is such that I would not represent myself or my team well at work. I’m good at putting things in the wrong cupboards or forgetting what I went into a room for.

back injuryI’m not complaining, the drugs are keeping the pain between 4-7/10 and whilst I hate not having a clear head, having no responsibility means I can focus on getting well and not worrying about dropping clangers at work where I really do need to be on my game. My wife kindly took 2 weeks of work at the beginning to look after me. I can now look after myself and walk to the letterbox and back. Not twice in a row though I discovered.

The good news is I am mending. Tomorrow I will be getting 3 Transforaminal Steroid Injections guided by x-ray to within half a millimeter of the 3 nerves (sounds impressive doesn’t it). I had one a few weeks ago and it got the pain levels from peaking at 9/10 to peaking at 7/10, so we’re hoping that this lot will bring it down to a level where I can reduce the meds so I can stay in bed all night and get my brain back to near normal and start planning my return to work.

Work by the way has been fantastic. I have really felt bad about not being there with my team at the end of the financial year, but conscious that if I don’t recover carefully it could be much worse. As it is I’ve been told to be extremely careful after the injections because my back pain may be reduced, but I will have to be really careful when the pain is down to not lift or do sudden movements which could set me back, so I’m expecting some physio to follow.

Buying a House Final Cover ArtSo I’ve been off most social media, blogs and anything else requiring concentration, but I have been thinking. About real estate and location based services and all the mistakes we make when we buy houses. As you know, I wrote a book a few years ago about using apps, maps and location based services. I’m now looking at a follow up course rather than updating the book. I’ve been thinking about this while I’ve been off and am keen to hear from anyone who would like to share mistakes or things they would do differently when they buy their next house.

I’m not looking for sympathy, but I’d love to hear some stories about homes you have bought and things you should have checked out first, maybe the neighbourhood, crime, amenities, the commute, property values, flooding or other things that you could have researched first. Drop me a comment. Apologies for any typos, I did proofread this about 10 times.

 

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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!

IMG_3494The 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. From West Plaza

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.
  • IMG_4479I 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%”

IMG_2105Unfortunately 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.

IMG_2290The 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.

Early Birds 2018

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

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.

CLGR7749In 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.

 

 

 

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Early Birds 2018

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

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

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.

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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.

20160320_095520Now 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.

Early Birds 2018Relay 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.

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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.


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

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

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

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

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

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

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

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

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

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

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

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

Plan for Cancer Music EP / Video Project

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

Want to be on the team?

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


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

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

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

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

 

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

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

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

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

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

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

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

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

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

 

Fighting Cancer with my Family and Friends at Relay For Life 17


2017 shirtGreetings friends. This is a special weekend where we remember those people we have lost to cancer over the years and encourage and embrace those of us who are still fighting this horrible disease.

As you can see on the photo, the team that my daughters created is called Early Birds. That’s because those who get tested and find out early that they have cancer are much more likely to survive and have a good outcome than those who don’t. I am so proud to say that due to my pushing over the last year and a bit, 17 people have had PSA tests and as well as knowing they do not have prostate cancer and in one case no breast cancer, they now have a baseline to allow them to catch it early if they do get prostate cancer like me and their survival rate will go up dramatically if they get a little blood test every year.

You will see the number 17 on the back and my daughter’s name on the bottom of the shirt, which was designed and made by her company Empire Promo. The 17 is made up of the names of the people I mentioned above, family and friends that our team is going to spend today honouring, all night and into the morning walking around a track at Millennium Institute on Auckland’s North Shore. You can see there are a lot of names and with a few late additions to the team there would be more if there had been time.

iPhone 280So today and tomorrow we will be walking to honour our people, to help fund research for accessible cures that save lives and don’t require that people sell their homes to pay for treatment, have somewhere to stay if they are coming to Auckland from out of town, like some of the great people I met when I was having radiation treatment at Mercy Hospital, and to thank those of you who donated to our cause, for your generosity. Whilst we do enjoy the event, the camaraderie and activities, we are here for only one reason, which is to save lives.

If you are one of the many people who donated to my account I want to thank you sincerely for your contribution. This is my 4th Relay and my second as a cancer patient. I am 25% short on my target of $1,000. If you would still like to donate, it isn’t too late and you can do so on my Relay For Life page here. I suspect most of you donated either for me (which is very humbling) and/or because of challenges you and people you care about have faced with cancer. I will dedicate laps to each of you and yours and especially to some very good friends who are still fighting the fight and aren’t in a condition to make it today. You know who you are.

I am planning to post a Facebook Live video at some stage so those of you who are friends with me on Facebook will be able to see a little of the event. For the rest, I will put something on YouTube after the event so you can see it too.

I won’t go on. You can follow me on Twitter under the handle of BluesBro, there will be some photos and tweets there as the weekend goes on. If you see them, please let me know. It would be great to share the event with you.

I do also want to send out a special thanks to my friends and colleagues at the New Zealand Transport Agency and Auckland Transport who have supported me in so many ways to date including donations, but much more than that. It hasn’t been the easiest of years and with awesome people giving me encouragement and helping me out during the tougher times, it has given me strength and Hope. iPhone 141