I’m in Remission, New Song for Cancer Album and Relay For Life

What a week I had last week, back to work blues, PSA blood tests for my prostate cancer and the usual agonising wait for yesterday’s meeting with my oncologist after my blood tests on Wednesday and more.

So the visit was short and sweet, my PSA levels have gone down a little, without the help of any more drugs and after prodding my stomach (not quite sure why and I didn’t ask) I don’t have to go back for another 3 months.

That’s a weight off my mind and I can refocus on getting on with life and I have so much I want to do.

First, there’s Relay For Life on 10-11 March. Team Early Birds is back for another year and I need your help. Our team is a little smaller than in previous years and if you would like to join us, we would love your company. You can get all the detail here.

If you can’t join us, it would be great if you could leave a little donation. Even $5 is tax deductible and it is an awesome cause. With one in three Kiwis getting cancer, anything we can do to aid research and the awesome work of the Auckland Cancer Society who have been a huge help to me, is welcome. Last year I raised $1,500. So far this year I haven’t got to $50. So either way, can you lend a hand?

My Big Project A Cancer Video EP, the Last Song

As you may recall, dear reader, I am working on a HAG project which is huge, creating an EP and video series for people with cancer and those who are supporting friends and family with cancer in some way to help them on their journey. If you missed that story, details are here and again I need help.

The last song is called Dare to Dream and after the good news again on Saturday, it seems the right time to share the story and lyrics with you. This song is intimidating to me because it has tracks that I can’t play including a sax and a gospel choir. I have no idea where to find either of these, but I am confident that with some help from my friends, I will.

The song is about being told I’m in remission and trying to process what that means. I used to think that being in remission means that you are cancer free, but when I asked Benji, my oncologist about that he said “You will never be cancer free. Once you have cancer, you have cancer. Remission means it is in control and you don’t need any treatment, for now.”

So for the foreseeable future I will be stressed out on the last week of each 3 month period and hopefully like yesterday, will be told the good news that I continue to be doing fine. Benji thought I was looking very well and looking back at photos of my pasty pale face of a couple of years ago when I was undergoing radiation treatment and dealing with chronic fatigue, I look great!

So if you’re still with me, here are the song lyrics. Super Better is an awesome book by Jane McGonigal which now has a game and a Facebook page. There is also a great TED Talk by her for those who don’t want to wade through the book.

Verse 1
I’m in remission, it’s a reprieve from my condition

In 3 months I’ll know more, for sure

Pinch me am I dreaming? Please explain the meaning

Before I close the door, does this mean I’m cancer free?
Chorus 1

The winter sun is crisp and clear,

I’ll write a list for 10 more years

Of things I want to do and see,

Things that mean the world and

Dare to dream, dare to dream

So much more for you and me

So much more that we can be

Verse 2
I’m in remission and I give myself permission

To embrace each new day as if the cancer has gone away

I’m going to grab a power up a SuperBetter lift up

Cause there are many on our team

Who need to dear to dream.
Chorus 2 (gospel choir for alternate lines)

Dear to dream

Watch me lift my hands up high

Dear to dream

Reaching out to touch the sky

Dare to dream

Take off like a bird and fly

Can’t believe this feeling

Repeats after break with lead guitar and horn section

So there you have it. I’m currently working on the demo for my second song called Who Stole My Words, which is about an incident where the chronic fatigue brain fog meant I couldn’t come up with simple words like current and channel to explain how I found myself upside down in an ocean kayak, without any fight or flight instinct because I wasn’t producing cortisol or adrenaline. I was upside down, underwater harnessed in thinking ‘this is interesting’. Anyway, I’m having a bit of a struggle going from fingerpicking to strumming and staying in perfect time with the clicktrack so I can add a walking bassline. But that’s another story.

So, can you help with Relay For Life, either with a small donation, or joining the team for 10-11 March in Mairangi Bay at the Millenium Institute? I’ll be there all night relaying with family and friends to raise money for the Cancer Society and in honor of the friends, family and colleagues who are fighting or who have lost their battle with cancer.

Do you know an Auckland based Gospel choir or a small horn section, or at least a sax player who could help with this song? The album will be Not For Profit by the way. I know I will have to pay for some of the work, which I will crowd source, but the end product will be free.

Want more info on my cancer journey? You’ll find it here. If you know anyone else who might find this interesting, please share it with them with my thanks.

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I’m in remission, Life List and moving forward

So I’ve just been told that I am in remission:) My first question was, what does that mean? I always thought it meant something like being cancer free, but my oncologist said that once you have cancer, you are never cancer free.

So what does it mean for me? For now, no more drugs and tests for 3 months (that’s the second lot of 3 months now) and that in itself is a big relief. I’m still getting my head around it.

I don’t want to write about my cancer as such other than a brief update and perhaps to help others on a similar journey. My fatigue is way better than it was and I am able to stay awake longer than I was, almost normal, although I still nod off if I am in an easy chair, but I am no longer fighting to stay awake at 6:30 PM, (every night) or playing Candy Crush to force myself to stay awake.

I do still tire easily, especially on long work days or trips, but it is getting easier.

I am still not producing cortisol, which is really interesting when you are on a rollercoaster that suddenly races off at a great rate of knots and everyone around you screaming and you’re thinking “hmm this is entertaining”. Or lying upside down in an ocean kayak, in a current thinking “This is interesting, I suppose I should pull the ripcord on my sprayskirt and get out so I can breath”. But I am aware of where I am at and much more cautious when it comes to driving if I am tired, or not looking at my mobile while I walk on the footpath and especially crossing the street with so many red light runners (3 just yesterday as I was going to buy some sushi for lunch).

I meditate every night using the Headspace app, which has been very helpful, especially with sleep and the way I respond to situations. I’ve been doing a lot of work on my values and what is important to me, which leads me to my Life List.

I am listening to The Hidden Why podcast, by Leigh Martinuzzi frequently (amongst many others), which I recommend, he’s pretty good for an Aussie (sorry mate) and a prolific poster and traveller on the topic of Why, which is pretty much the key to everything, right?

Recently he interviewed Danny Dover who wrote The Minimalist Mindset, which I am currently reading. I got it for a minimalist cost on Amazon for Kindle, but I’m tempted to buy a hardcopy as well, because it is the sort of book you want to read with a real highlighter and Post-It Flags, rather than virtual ones, because they are easier to use. In fact I might buy a few copies to give away to friends.

So I’ve had a Bucket List which I revisited since I was told those three words ‘YOU HAVE CANCER’ and some of the things I wrote about were things I wanted to have, like a National resonator steel guitar, which really doesn’t matter to me, and a Corvette, which does.

But what Danny did to help himself out of severe depression was create a Life List of 150 things he wanted to complete within a 10 year period and they are values focused and I was inspired to do that. So I officially started that list today and am part way through reading his book.

I’ll blog about the Life List separately because it will be part of my process and I hope it will help other people to focus on what matters to you rather than ‘stuff’ to have or own. I’m also going to work on it with my wife, although there will be things that matter to us and things that matter just to me, so there will be overlap.

It’s a shame that it takes something like having cancer to wake us up to put more effort into life, not that I haven’t put a lot of effort in, but there are many things I could have done better, and many different paths I may have chosen. The important thing is my focus on a future based on my values and I am very clear on what they are. So today on 8 August 2017, I am starting my 150 item Life List of things I want to complete by 7 August 2027.

I have started item 1 and if you want to know what it is, watch this space. It’s pretty cool IMHO.

And When I Die

No I’m not talking about my blog, but it is relevant to the podfade. There is so much I want to write about. How thrilled I was about The Hyperfactory achieving their harvest plan and that Derek and Geoffrey are planning on coming back to New Zealand to share their knowledge and help others follow in their successful path. As you know location based services and mobile marketing are amongst my passions.

I would also have liked to talk about the Rex which set foot in New Zealand, just as I was bemoaning the difficulty of Kiwi innovators to capitalise on their ability; again an area that has been of great interest to me. Then of course there is the tentative success of the oil cap on the BP oil well. I have pondered much on Oceanic Dead Zones, whilst the BP accident helps extend them.

Two months ago I was faced with a family crisis. My father in law was told that he had somewhere between 3 days and 2 weeks to live. Life as I know it, pretty much stopped. Our close family was in shock, even though we knew it would come eventually. Before you offer condolences, he is still alive:)

Having developed a taste for tobacco while serving in the air force, 20 years ago he had a laryngectomy as a result of throat cancer. He didn’t take it lying down. He learned to talk again and picked his life up. He became involved with the Lost Chord Club and eventually became President, counselling others through their throat cancer journey. He also visited schools and let children look into his stoma, seeing that he had to breath through a hole in his neck, caused through smoking.

So for most of the last 20 years he was in remission, then the cancer returned and as often is the case 2nd time around, it was not going to be possible to treat it.

So my life and that of my family has changed dramatically for a while and  many of things I have been wanting to do, I haven’t had time for. We spend as much time as we can with him, because once it is over it is totally over.

It strikes me that whilst we all know that from the moment we are born, we can be certain of one thing (I have blogged about people (such as some from Singularity University) are doing everything they can to avoid it) it appears that death is a given for each of us.

So we have been assisting with respite care, trying to help him maintain his dignity as he becomes helpless, and his confusion as to both why he is still alive and what will become of him when he dies. Will there be a place for him in heaven? Is there a heaven? These things worry him. He has never been a religious person, although he was a church choir boy many years back. He worries about his wife and what will become of her after he passes on.

We all worry about each other, how each is going to cope with the end. I wonder how the women of the family cope now, they look after him around 18 hours a day, partly because they want to and partly because there are not many people who understand how to look after someone with a hole in their neck, who can’t talk. If he had a shower and water got into his stoma, he would drown. If his neck valve leaks (and this happens from time to time) when he eats a few spoonfuls of his porridge, the food can leak into his lungs.

Anyway, things aren’t normal right now and no one can tell him what is next tomorrow, let alone for eternity. Two months ago he was told maximum 2 weeks. Two weeks ago we were told “a few days”.  It took us a while to understand what he meant every time he woke up and asked “What’s going on?” We thought he meant Who’s here? or Is someone going to take me to the toilet? But eventually we figured out that he is asking, “Why am I still alive?”

So it seemed appropriate as I wait for my finger nails to toughen up again (for guitar) after washing the bathroom and shower, so I can do my latest Berklee Music assignment and then head back to the rest home after a work out at the gym (down to one a week because I go to the rest home straight from work) that today’s blog be about something more basic than singularity and the latest problems with iPhone 4. Once you break it down, we are just an essence in a body that peaks somewhere between late teens and mid twenties and then starts to die.

Sometimes all that matters is the people that are close to you and can give you comfort, and you them. When you break it down, we are beings in flesh and blood in a temporary home.