If You Think You Are At Risk of Getting Cancer


IMG_2290Sort out your insurance before you get tested, so that you know you will be covered if you do get cancer. As some of my friends know, it’s a very expensive condition. One of my friends had to sell her house to help cover the costs of treatment because her insurance cover only paid for 60% of the treatment costs and whilst going to public health is an option, this is something you want to deal with as quickly as possible.

Perhaps like me, there is cancer in the family, or you are getting into your 30’s or 40’s it is worth checking out cancer insurance.

We just found out that Southern Cross has optional Cancer Assist insurance. I wish they had told me a few years ago, although, like you, it never occurred to me that I could get cancer. It’s always someone else that I feel sympathy for.

Unfortunately by the time I found out, I had already been told “You have cancer“. Fortunately I did have income protection insurance with a one-off cancer payout, because the first thing that my insurance broker, Tom told me when I let him know that I had cancer was “You are now officially uninsurable.” Ironically I didn’t know that I had a policy that included cover and my broker volunteered to look for me, even though he didn’t sell me the particular policy. I am extremely grateful to Tom Fox of Canopy Group for helping out. If you need a broker, tell him I recommended him. He took a huge weight off my mind in a stressful time.

Fortunately Southern Cross medical insurance has paid a large chunk of the many biopsies, MRI, CT and other scans, radiation treatment, countless specialist visits and more, but if I hadn’t had those insurances, I’d be under some serious financial pressure right now.

As a male in New Zealand, you have a 1 in 9 chance of getting prostate cancer. If you had those odds of winning a lottery you’d think that was exciting right? Not quite so exciting with those odds of getting an illness.

I can’t remember how many people got tested because of my pushing and prodding, it must be getting close to 20, but I would be horrified if some of those people didn’t have cancer cover before they got tested and found they did have it.

EarlySo here’s my plea to you. Get cancer cover. Sort out your life insurance, then even if you feel perfectly healthy, get tested. Mine was found early and probably saved my life. We begrudged paying the premiums for years, saying what if we had put that money in the bank, but you don’t right?

 

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


IMG_2256

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?

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

A Cancer Meltdown


So a couple of weeks ago I felt like things were going OK. I had my cool car and whilst I was feeling really fatigued, I was coping. Then a pile of little things got the better of me. I was late with my tax (which I hate doing, because I normally do that at the end of the calendar year, when I was doing 8 weeks of radiation therapy and was too tired any other time. I’m between test results, so anxious about what the next result will be. My arm is really sore after taking the splint off my wrist from a thumb strain (which impacts on everything from using a mouse to playing guitar. Super busy at work and a number of other things, nothing that would be beyond the norm for any of us in isolation.

20160503_161554.jpgI had words with my wife, something that is very rare and after she left the music room, I lost the plot. I picked up my office chair and flung it at the floor breaking the base and ripping the carpet.

This was not good for our relationship and the following night I was away on business, which was probably s good thing to allow us to both cool down. It was totally on me and something I haven’t done since I was a teenager. I do not have an anger problem, it’s just one of the many emotions that you go through with grief and with cancer. Some people cry a lot (I only get emotional like that when giving speeches at weddings or when I’m watching an awesome concert). I might get slightly bloodshot in the eye when I’m passionate about something, but again that is when I’m happy.

So the following night I found myself in a hotel in Wellington after a 4:20AM start and a long working day. I sat in my hotel room looking out the window and pondering the meaning of life from about 5-7:00, went to bed. No dinner, no TV, a few SMS’s with my wife and slept for about 11 hours.

Bottom line, I really needed to let off steam. But I wasn’t finished and this is the good part. Right through summer when I usually write and play a lot of music, play a few gigs,  I couldn’t play, I had lost my mojo. Well after this exercise I got it back and over the last couple of weeks have written the backbone of a new song, which was the catharsis I needed.

Here’s what I’ve got  so far. It’s a country song, I really like country as a genre for telling stories. I hope to fine tune it enough over the next few week to start recording it, because I like the song as a song, not just a form of letting off steam.

If I Could Turn The Tables

Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

Verse 2

If I could turn the tables I’d unsay the words that I just said

I’d turn down the volume of the voices that keep crashing through my head

Sometimes I feel like I’m OK, then the doubts start to shiver down my back

I’ve got to climb out of this hole and find my way back.

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Verse 3

I’ve got a lot to live for and each day I add on to my bucket list

I have great friends and family, there are special dates that I don’t want to miss

Sometimes I just want to cry, sometimes I wonder what its like to die

Then I think of those I’d leave behind and find my way back

Bridge

Every day’s a gift

Every day’s a steal

You can’t be the driver

Unless you take the wheel

Take the wheel

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Repeat Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

-I’ll share a link once I’ve recorded it. It’s great to be back in writing mode and I hope I stay there. I’ve missed writing songs (other than my Pi project). I feel so much better having transferred my emotions into music.

I’ve been wanting to write songs about cancer to share, which might also help other people, be they the patients or friends and supporters. I have one other that I wrote but haven’t recorded yet, it’s more of a soul/reggae number which I wrote about losing my father in-law (also to cancer), but I thought I’d like to do a few covering different aspects.

Anyway, that’s me. Now I have to transcribe the song and publish it. If you’re still here, thanks for coming  on my journey with me.

 

Dealing with Cancer fatigue


It’s a little after 6AM and I’ve been awake for a couple of hours and decided to get up and do something constructive. My mind has been going ten to the dozen with ideas for my blogs, how to deal with all the exciting things happening at work, cancer and music.

This could become a book, which may help if you or someone you know is dealing with cancer, or it may not. At the very least it will help me as a journal and that’s fine.

Today is about emotions, not just for myself but the people that surround me and about coping mechanisms

The irony is that of all the people I know with cancer, my condition and prognosis is probably among the best. I’m about 6 weeks away from getting my next PSA tests, but the last one was the first one that went down since my 8 week’s of radiation, which is great.

Meanwhile 2 good friends have recently had mastectomies, one last week, she is still in hospital, another is making regular trips to hospital as the cancer has metastized, a colleague who is helping me by talking to me about her situation, which is terminal and another good friend whose cancer has now gone to his brain and is possibly inoperable.. None of these are people I met through cancer, they are just close people in my life.

My boss asked me a week ago how I was doing. I told her I felt I was improving, especially my fatigue and sleep, but that was speaking too soon, because as soon as I had told her that, it went backwards again.

Here’s a classic scenario for me, almost every day. I go to work and try to pace myself, with a goal to walk for half an hour at lunchtime (sometimes I achieve that, maybe once a week, because I suffer death by meeting). I love my work and when I’m busy I don’t think about the cancer at all. The goal is to leave around 3:30 and perhaps catch up on a bit of work reading when I get home or just rest. I then mostly leave between 4 and 5, which is still much earlier than I used to. If I don’t pace myself I really suffer to the point where it is an effort to raise my weary legs to walk from the car to the house, or do much of anything, where previously I used to go home and get on the cross trainer or go for a walk and play guitar. If I make it much later, I have to really think about whether I should be driving, make sure I have a coffee, windows wide open and focus. Don’t worry, I had one tiny moment once and have been ultra cautious ever since. I will not drive if I am too fatigued.

I come home, have dinner and fall asleep about 7PM. Once a couple of weeks ago I fell asleep eating a piece of steak, fast asleep, although my wife maintains I was chewing in my sleep, I think that was a moment when I woke up. I feel ripped off because that is my time and my time with my wife. She tells me to go to bed, but I feel too annoyed about losing my evening, the part of my lifestyle that I work for. By the 3rd time i grudgingly go to bed somewhere between 8 and 9PM feeling really bad for leaving my wife on her own every night.

Despite falling asleep in the lounge, I then need something to help me get to sleep when I get to bed, with which I am gone within 15-30 minutes. During the week I will sleep around 10-11 hours and wake up just as tired as when I went to bed.

On other nights, mostly weekends, I will wake up at 2 or 3 and get up and read for an hour and go back to bed, but I will still usually get 8-10 hours sleep.A couple of years ago I was fine with 6 hours sleep.

The fatigue is hard to describe. It is both physical and mental. At night it is a feeling of being dead tired and I have no control over it. I sit down, we watch TV or read my Kindle and within minutes I’m in a deep sleep. But it’s also physical. I now know what bone weary means, because that’s what’s its like. My whole body is exhausted. Lifting a limb is hard work. I go to play guitar and pick it up, put it down, it’s too hard and  LOVE my guitars.

I’ve been working on my attitude, but please don’t tell me to think positive, I think all cancer sufferers hate hearing that. It’s not helpful. I’ve been focusing, as in my previous blogs about things to look forward to. One of those was my new car. With the help from a malignant cancer clause in one of my insurance policies (which also continues to help with costs not covered by my heath insurance), I was able to by a  C5 targa top Corvette. Something I wanted all my life, but never thought I would ever own. The closest I thought I would get was sitting in one with my daughter at Disney World in Orlando. It is interesting how many people buy themselves a new car when they have cancer.

car

Ironically I wrote that goal in my bucket list app in 2011, not for a moment thinking it would come true and the due date for the goal was about 80 days from when it happened. I am a strong believer in goal setting, although I don’t do enough of it. I am starting to again though:)

But goals and things I look forward to may be as simple as putting new strings on my granddaughter’s guitar and giving her lessons, or a weekend away with my wife and friends, as well as bigger things like doing a rubber ducky boat trip on a glacial lake on the Tasman Glacier, a trip to Samoa this winter, or writing a new song. I’ve had several experiences where things on my bucket list that were highly unlikely, like being able to go to my grandmother’s 90th birthday party on the other side of the planet in Amsterdam, came true serendipitously and I subsequently got to go and visit her several more times before she passed away at 98.

The car is certainly good medicine. I love being behind the wheel and I even enjoy the process of polishing it, while listening to a podcast on my phone. We haven’t been on a road-trip yet, but it is now second nature, more or less, driving a left hand drive car in a right hand drive country. I am now the guy that I used to give the thumbs up to in a gas station or other places, when people see my car.

I’m going to break this up and the next blog is going to be about a melt down I had a couple of weeks ago, which was both bad and good.

 

Update and coping with cancer


It’s been a while since I last posted on this topic and I know some of you are more comfortable reading this than asking how I’m doing.

In a nutshell, I’m improving. My last test a couple of weeks ago was the first time my PSA levels have come down, although not as low as we need them to be. In 10 weeks I’ll have another test and we’ll hopefully see that it is trending down, which will mean tests every 3 months and I’ll be on the mend.

In the meantime I still suffer from fatigue 24:7 but not as bad as it was and when I’m busy and focused on doing things, I don’t notice it. But that also means that it is really easy to overdo it and if I have a really busy day at work, or even just at home, I pay for it.

I now have some nights when I don’t fall asleep at 7:30 or earlier, but it is still more common than not that my wife wakes me up somewhere between 8 and 9 to tell me to go to bed and off I trot, feeling ripped off both because I’m missing out on my time and our time and I feel bad about leaving her on her own each evening, while I trot off to sleep. It’s also frustrating that you feel tired all day whether you had 5 hours sleep or 12 hours sleep.

Anyway, what I’m focusing on is looking forward to things and trying to live in the moment. We have spent much of our lives looking to pay off our mortgage and reducing debt, rather than living life for today. Cancer makes you want to make sure you have taken care of your loved ones financially, but it also makes the bucket list more important. One of the things on my bucket list that I was confident I would never have is the new toy we bought.

carI have always loved Corvettes and now I have one and I love it. Hopefully my wife and I will have fun doing road trips and make lots of new memories. Living in the now isn’t easy and it is important to be financially secure if you can. It is also important to have fun and enjoy life, which isn’t easy when sometimes life feels like crap. It doesn’t have to be a cool car, it can be just looking forward to going out for lunch or catching up with a friend you haven’t seen for a while. It is important to have a focus that takes your mind off the fact that you have cancer. Doing things that make you happy creates good chemical reactions in your body and if you are creating endorphin’s that has to help your immune system.

I want to share a poem with you that reflects a bit of the feeling I had about living. It was written by Alistair Morrison and I hope I’m not breaking any copyright laws by sharing it.

Such a Good Boy

He never said ‘Die’ to the living

He never said ‘Scat’ to a cat.

He never said ‘Boo to a Kangaroo.

He never did this or that.

He always kept clear of propellers

Never spoke to the man at the wheel

He always said ‘thanks’ to people in banks

And always took food with his meal.

He never took umbrage, or opium

Or ran round the rugged rocks

He never missed school, or acted the fool

And always wore woolen socks.

He never sat on a tuffet

Or pulled out a plumb with his thumb

And never in churches left ladies in lurches

Or opened the OP rum.

He never pinched little girls bottoms

Or peered down te front of their necks

Considered it folly to covet a dolly

Or think of the opposite sex.

He never did anything nasty

He never got stinking or cried

Unmarred by one speckle, a permanent Jeckyll

With never a shadow of Hyde.

He never called anyone ‘Drongo’

Or even ate peas with a knife.

He never crossed swords with the overlords

Such a good boy all o his life.

When he finally died and was buried

His loving ones tried to mourn

They put at his head a tablet which read

“Here he lies, but why was he born”.

 

 

PSA Going Down


For those of you who have been following my prostate cancer story, I’m really happy to be able to report that I had my latest visit to my oncologist yesterday who told me that my PSA levels have finally started dropping.

This doesn’t mean the cancer is gone, but it does mean that things are improving and whilst I continue to be really tired and have other side effects, it’s all heading in the right direction.

I can now go from monthly visits to 3 monthly visits for the next 2 years assuming things continue to improve.

Relay For Life was awesome, thanks so much to those of you who supported team Early Birds. We raised almost $7,000 for cancer research and had a great time doing it. It appears that many of the team have already committed to doing it again next year, even before they got over the aches and pains.

There are still some donations coming in and the North Shore event raised just under $190,000!

Here’s a sobering thought for you, but if you think about it and your circle of friends, family acquaintances and colleagues. One in 3 people in New Zealand will be diagnosed with cancer in their lifetime. If you wrote down a list of all the people in your family and then do those sums, this is a very important cause. Who will it be in your family or circle next? It’s the selflessness of people who fund raise for research that make a big difference and could save the lives of people like you and I in the future.

While I think of it, the Auckland Cancer Society Research Center ACSRC having an open day on Saturday 9 April. With TED Talk style presentations, a tour and loads of information about ground breaking research happening here in New Zealand. Click here for details.