I need a little help from my friends


Mercy ScannerSince I was told those words “YOU HAVE CANCER” I have been wondering how I could turn it into a positive. I’ve seen so many people on TV on shows like The Voice and they all have a story of troubles that they turned into amazing success stories.

It’s taken me two years to come up with a HAG. It’s not fully fleshed out yet and it is full of challenges and I’m hoping for my friends to help me out.

I’ve always considered myself a survivor, but I’ve struggled at times and often feel embarrassed when people suffering 100 times more than I am, try to make me feel better.

I’ve been reading an awesome (but huge as friends and fellow sufferers I have bought copies for) book called SuperBetter by Jane McGonigal which is all about using gamification to help yourself deal with chronic illness and trauma. Between that and two sensory deprivation floats over the last 2 days at FloatCulture in Auckland, I’ve come up with 4 ideas. I will flesh them out later, but I’m looking for a little help now and a lot in the future and I’m hoping you will find a way to join me.

Another Stretch in Iraq

  1. I am a singer songwriter, or at least I was before I got sick and I want to be again. Over the last 2 years I have struggled to play my guitars. I typically pick one up, play for a few minutes and put it down again. I struggle with chronic fatigue. In recent times I have often had to go back to bed during the day and even if I have slept most of the afternoon, I’m likely to be asleep again around 7:30-8PM. Here are some things I want to do:
    1. In about 9 months I want to do a gig somewhere with great acoustics, playing my originals (including new songs about dealing with cancer) with some backing from other musos.
    2. As per the SuperBetter program, I need 2 or 3 people (close friends) to check up on me and help me stay on track. That might be texting me or giving me a call each day and asking how my music is going to make sure that I stick with it, even if it’s only for five minutes.
  2. I’d like to help other musicians with cancer who feel the same way and would love to get back into their music but are struggling like I have. It might be that I can put together some sort of guidelines (everyone is different and it isn’t paint by numbers) based on my own experience, such that they can come up with their own model and get help from their friends to achieve the same results.
  3. If  we can achieve that, wouldn’t it be awesome if we could put together a gig/s of songwriters and musicians who have cancer or are in remission around New Zealand? Wouldn’t that be something amazing to aim for!
  4. I need a lot of help. At the end of this year I had most of the last 2 weeks off sick because of fatigue. I spent most of that time sleeping day and night. I need my job (both because I love it and because I need the income) but I’ve been struggling to front up. I need help putting together and maintaining a website or Facebook page to tell people about this initiative. Bottom line is it is going to be a struggle just for me to play every day (and keep my job), let alone grow this thing into something that will give energy and bring a spark back into people’s lives who are suffering and struggling just to get from one day to the next.

So what do you think? Is this a good idea? Do you know anyone who is a musician with cancer (or in remission) who has struggled like I have to motivate themselves and get back into it? When I have been able to play and write, like the song I wrote, which I blogged about here in a Cancer Meltdown,  it was extremely cathartic. Music is a healer.

I will be approaching a few close friends directly to assist me in my immediate journey to play every day. But for the other things I can do with a lot of help. Do you know songwriters and musicians with cancer? Do you know people who want to help them? Can you help in some way?

Can you please share this post with people who you think might be interested?

I’m going to try with a little help from my friends, actually a lot of friends if possible and friends of friends, because it’s 10 in the morning and I’m already tired. But I am going to play today.

Thanks for sticking with me. There is a lot of work to do and I can’t do most of it. We all know music is good medicine and can help drive a positive attitude. A lot of beating cancer is about attitude.

For now you can contact me through my blog. I don’t want to put my email address on here and attract phishers. Since I wrote this blog, I now have a Facebook group called Musicians with Cancer and Other Maladies. Please check it out and share the word.

Again, please share this so that we can help other people in a similar situation to me. Thanks a million.

 

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”.

 

 

It’s my birthday and have a request


I don’t ask for much and I don’t need much. I am the worst person to buy presents for, ask my kids.

photoAs you may know I have prostate cancer and I am doing the Relay For Life, as per countless posts below. What I am asking for is for all my friends to donate $5 to my Relay For Life entry at https://aucklandnorthrelayforlife2016.everydayhero.com/nz/luigi. If you are in NZ it is tax deductible. The money goes to the cancer society, but I would consider it an awesome gift to me. Do it now.

I know $5 seems like such a piddly amount that it’s hardly worth the effort. But it is. I have a lot of friends and associates and if you all did that, it would add up to helping the cancer society deliver on the needs of a growing client base, big time. Every single person in New Zealand, diagnosed with cancer gets offered a pack with brochures and booklets giving them information about their condition and support services available to them. 60 people will be diagnosed with cancer in NZ today going by averages.

If you really don’t feel that this is something you want to do, here’s something else you can do for me instead. Guys. go get a PSA test. It’s just a blood test, and even if it comes up healthy, you now have a base line for future tests. I didn’t have any symptoms and his simple blood test led to us finding out that I have cancer. At this point due to my urging 13 men have had their blood tested and a woman has also had a lump tested that she had been putting off. 60 people are newly diagnosed with cancer in little old New Zealand every day. If you do, let me know, I’d love to know that I have helped more people.

How am I doing? One day at a time. The side effects are slowly reducing, but I’m generally nodding off to sleep from about 6:30-7PM every night which doesn’t make me very good company for my wife and family, but I have lots of support and lots to look forward to. My next meeting with the oncologist after another PSA test is the beginning of April, so I don’t have too long to find out how I’m doing.

iPhone 279The Cancer Society has asked me to do a brief speech at the Opening Ceremony of the Northern Relay For Life on the 19th of March at 15:45 before we start our 18 hour baton relay around the running track at the Millennium Institute. That will be a real honor and I have promised to keep it brief, but I will be thanking you. Come and check it out and keep an eye out for Team Early Birds.

So as to my birthday request. Got five bucks you can spare? Don’t do it for me, do it for one of the many people that you know or are related to that are battling or have battled cancer. 1 in 3 Kiwis get it at some stage in your life so you will be helping someone you know or care about. Don’t put it off. Do it now. If you know someone else who is doing the relay, donate it to their account, it all ends up in the same pot. And guys get that blood test.

Thanks from the bottom of my heart. In the meantime, I’m off to work. Busy day ahead before I catch up with my family tonight before I fall asleep again:)

 

 

There’ll Be Days Like This


Damn this fatigue. Yesterday I got half way to work and turned around and drove home again feeling very guilty about the meeting I was supposed to be chairing and the work that’s piling up. Most of all being there for my teams in Auckland, Wellington and Christchurch.

When I got home and went to change out of my work clothes there was a Harvard Studies paper sitting in my wardrobe which I had been meaning to reread. I have reading material everywhere and my apologies to OCD people who like to have everything in its place. Its about delegation, which has been a focus for me, but one I need to focus on much more because reading the symptoms of someone who is not delegating enough, it could have had me as the cover boy. Having read that, I started planning for the next day.

Last night I went to the North Auckland Prostate Cancer Support Group for the first time. Unfortunately there were only 3 couples there. The organizers thought it might have been because of touch matches at the club next door who had not only taken all the parks around the field, but even had a truck parked across the disabled parking area.

I met two men with advanced cancer, both of whom were retired, both whose cancer had spread to other areas, one is terminal and one whose cancer is now undetectable, but still having hormone therapy to make sure it didn’t come back.

The main advice I got from them and their wives was to take things a moment and a day at a time. Another was the benefit of walking, they both walk between 6 and 10km a day. I need to find a way to get back to doing that.

I set the alarm for 6:20 and started waking up about 2AM, isn’t t funny that when you are the most tired, you can’t sleep at night but you can sit down at 10 in the morning and fall asleep. I decided I’m off to work this morning and am going to do a stock take. Get an idea of where the true priorities lie for the rest of the week and focus on what matters, which is mostly the people.

I showered, took some medication which I have for night time (no it doesn’t make you drowsy and won’t affect my work or driving, but it shows where my head’s at). I had Van Morrison in my head.

I’m looking forward to getting back to Day’s Like This.

When it’s not always raining there’ll be days like this
When there’s no one complaining there’ll be days like this
When everything falls into place like the flick of a switch
Well my mama told me there’ll be days like this
When you don’t need to worry there’ll be days like this
When no one’s in a hurry there’ll be days like this
When all the parts of the puzzle start to look like they fit
Then I must remember there’ll be days like this

Je Suis Fatigue – Day 25 of Radiation Therapy


This was a year ago and I’m still tired and getting ready for the next Relay For Life on 25th and 26th of March 2017. If you can spare a fiver, it would be much appreciated. I’ve only got a third of my goal so far. It’s tax deductible and 100% goes to cancer research. Click here for more info.

I haven’t posted about my cancer for a few days, partly because it would be a boring read and partly because I am fatigued. I knew that the radiation would make me tired, but this is something different and I’ve struggled to find the words to define it.

Fortunately the Cancer Society has information online that helps. It describes it as an overwhelming tiredness (physical and emotional) not relieved by rest or sleep. That pretty much encapsulates how I feel at present

It also says that while the reason is unknown, it may be as the cancer cells die they release waste products. Your liver and kidneys have to work harder to get rid of these toxins, using valuable energy. I like that description because I can then take it that these tumors are being killed and I am beating the cancer.

It also says that the fatigue usually lasts 3-4 weeks after treatment but can continue to last for several months. I’m hoping that’s not the case given that I’m back at work on Monday.

alex harry wedding car

The Groom’s Bridal Car

So a couple of days ago I went to an awesome wedding in Tawharanui, a stunning location north of Auckland. I had done some research for a short speech I wanted to give. A little humor and a lot of love for the couple, the bride having been part of our extended family since she was 2 years old.

I couldn’t do it, emotionally I didn’t feel capable of doing something that I am skilled at, that I wanted to do, that I have done hundreds of times at conferences, training courses, weddings, funerals, birthdays and other events all over the world and I couldn’t do it in a place where I was surrounded by family and friends.

It was a wonderful wedding, but I was so fatigued I could barely hold a conversation. The following day, yesterday, was worse. Because we drove home after the wedding, I had arranged to have my radiation treatment moved from 07:30 to 13:30.

That was a mistake, it’s hard enough having a moderately full bladder and empty bowel first thing in the morning, but doing that early in the afternoon, plus a delay before I got my turn was a nightmare. My bladder was fit to bursting before I was called up, so I had to void a little and was about to get rid of even more a second time when they finally called my name.

I lay on the table praying that I would be able to last the amount of time it takes to get me in the right position, do a CT Scan, make minor adjustments and then start the radiation. It seemed to take forever and I was on the verge of jumping off several times.

The strain and pain of holding it back had me fighting an enormous battle between my dignity and my bladder control and I was looking for a button to call a nurse and call it off, but there wasn’t one.

I wasn’t going to risk getting off the table while the photon beams were radiating and risk damaging other parts of my body, but the intensity of holding my bladder was enough to give me a massive headache. When they came in to get me off the table I apologized and said “Sorry I have to run.” I meant it literally. I’m glad I still have that control!

Sorry about the detail, I’ve avoided talking about side effects. Let’s just say that going to the bathroom is not the satisfying ritual it used to be, but on this occasion the relief outweighed the negative aspects. I never thought I’d be blogging about going to the toilet, but this process has lowered my inhibitions.

I had a nurses appointment afterwards and he gave me a urine test to take home (given that I had just saved my bladder from bursting) in the unlikely event of infection and recommended I go home to bed. By the time I got to the car, I was busting again! So I went back and did the test and it was as if I hadn’t been before. It was like letting the air out of a fully blown up balloon!

Other notes:

  • Relay For Life rang and asked if I was prepared to do an interview in a local paper about why I am doing the event again. The answer was yes, although I feel that is a lot more public than my blog and social media. But, given that 7 people have been motivated by my story to get tested, that might otherwise have procrastinated and might not have caught the cancer early like I did, if I can help save one person from a serious condition, it’s got to be worthwhile.
  • songMusic. I’ve started reworking a song I wrote for a friend who died of cancer a few years ago and making it more generic. I’ve been waiting for my muse to come back. It’s good to get back into it again.
  • I’m hoping to get some more donations for Relay For Life. It’s a real struggle. I know it is still a couple of month’s away. I’m keen for suggestions from anyone as to how I can encourage people to part with $5. It’s tax deductible so you even get some of it back. If you can find the time, I would so appreciate that gesture. The Cancer Society are a charity, the first people I called for help and advice once I knew I had cancer and they get no funding from Government. We also have room for a few more members on the relay team if you can handle taking turns walking around a track for 24 hours. It really is a fun and moving event.

If you’re still here, thanks for supporting me on this journey. I am feeling a bit better today, hence the almost 1,000 words, but also looking forward to a quiet day inside while the storm rages outside. Wishing you all a wonderful weekend. I’m now going to reword the speech I didn’t give into a letter that I can give to the newly married couple.