Humor is the Best Medicine

Check out the great guitar playing on this video. As to the song, it reminds me of the week when I read the definitive book on prostate cancer. I had to but wish I hadn’t. Great lyrics though.

Remember Reader’s Digest’s Humor is the Best Medicine? Yesterday at work a guy came up to me and said, I can’t help you with your cancer, but I can make you laugh, would you like that. I said I would and he proceeded to tell me some corny jokes and I felt better for it.

I’ve written a couple of songs about my cancer journey so far. I haven’t got the energy to record them yet, but watch this space. Music is very much a way of dealing with issues, whether you are a listener, a songwriter or composer. It is cathartic.

As to my journey, in short, I had to stop taking my drugs because I stopped producing enough cortisol which along with the cancer drugs caused fatigue which has had me sleeping very long hours and having to take time off work. I am now also anaemic and they can’t tell me why. It’s not iron, it’s to do with my red blood cells. I also became intolerant of fructose and lactose, which doesn’t give you a great number of tasty diet options.

Anyway, my oncologist told me around Christmas to stop taking the cancer drugs until we figure out what else is going on and referred me to an endocrinologist. When they didn’t ring me, I rang them and they said “The soonest we can see you is 10th of March!”. So I’m thinking, no cancer drugs, all I am really good at right now is sleeping and I feel even more tired when I wake up than when I lay down and I have to wait nearly 3 months to see someone while those tumors could start growing again. So I rang the clinic every day or two and yesterday managed to get a cancellation.

So on Monday I will go and fill another bunch of bottles with blood and wait for Greenlane Hospital to ring me to arrange a test that sounds a bit like hooking me up to a line and shooting adrenaline down it to see what happens, because my fight or flight has become sleep or creep.

I’m very grateful that something is happening and hoping for some answers and feeling embarrassed and humbled when people far worse off than I am give me words of encouragement .

Meanwhile I am also looking forward to Relay For Life in March. I don’t know how much energy I will have, but I’ll be doing as much of the 18 hour walk with team Early Birds as I can at the Millennium Centre on the North Shore on 25th and 26th of March. I am so grateful to my family and friends for organising the team, tents, clothing and everything because I don’t have the energy for it. Of course they aren’t just doing it for me, we all have friends and family that are fighting or lost the battle with cancer and each person in the team is there for a bunch of people. We wear their names on our clothing.

This is raising funds for cancer research (and NZ is a world leader) where every single cent goes to the research, nothing goes to administration and everyone involved volunteers or pays for the privilege of being there. Buddy, if you can spare a dime, maybe $5, please go to this page. If you live in New Zealand, even your $5 is tax deductible, so the charity gets the lot and you get some back. That’s pretty cool right?

So here’s the thing. One in three people in New Zealand will get cancer in their lives.

Let’s try a little game:

Take everyone in your office or flat or home and line them up. Get each person to call out a number, 1, 2 and 3. Then get all the 3’s to stand on one side of the room and the others to face them.

Stand there for 3 minutes and look at each other and think about what it would be like if those 3 people had to battle cancer and how that would make you feel. Then put yourselves on their side of the room and think about how it felt when the doctor said “You have cancer”.

Then think about what if you could help reduce that number. Relay For Life is helping fund some leading edge research such as treating cancer like a virus. Imagine being able to take something like an antibiotic and the tumors just magically get flushed out of your system. Those people are being financially supported by you encouraging us to walk in circles throughout the night.

 

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I need a little help from my friends

Since 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.

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.

I 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.

 

Prostate Cancer Radiation Day 11

I was sitting in the car park having finally remembered both my water and my star chart on the same day (I have today off!) for my 11th day of external beam radiation treatment and I was thinking, ‘why can’t they just use a light sabre, there seem to be an awful lot of them around this year’. I’m not sure I’d want to DIY though, I might lose more of my anatomy than intended.

It is now becoming pretty routine. Sign in, confirm my appointment for tomorrow. Do I still want my nurse’s appointment? Yes because the odd little side effect is starting to show and I want to discuss them. I now have some sample sachets of Ural which may help improve my flow, so I don’t have to stand there reading my emails while I wait, despite my bladder telling me I’m busting. Makes me wonder if the guy standing next to me adjusting his tie also has prostate cancer. I didn’t want to turn around and ask in case the Ural suddenly started working!

I started off listening to audio books on the way in, that was my plan, but I found that I was thinking so much that I couldn’t remember what I’d heard so the quantum physics and cosmic strings of big data as applied to Sociology 301 might have to wait until later in the day.

Maybe it’s the lack of coffee at 6 in the morning. A diuretic is not a good look when you’re trying to arrive and hang on to a semi full bladder.

Now it’s Spotify. I listen to new music Tuesday in the car until new music Friday comes along, in between I listen to starred and radio likes from starred. If you use Spotify, you’ll know what I’m talking about.

Off downstairs, clothes off, lava lava on, clothes in the bag, bag on a shelf and look; they have Christmas decorations. I must thank them for making the effort. When I go in on Sunday, so do they. The little things matter.

I get to the circle of chairs around the table in the waiting lounge and greet my fellow travelers, all on our different crusades, fighting off evil unwanted invaders.

I’ve noticed something about the discussion today. There isn’t much. One of the patients has his wife with him for support. That stops people asking questions about urine flows and side effects, like the guy with throat cancer who can’t taste or smell. Fortunately for him that isn’t permanent.

There is definitely  a gender element to cancer chat. I am sure that when a group of women are together here on their own, they will be just as frank and open as our groups of men are when we are on our own. But neither group wants to talk about the side effects, the after effects or the fears they are burdened with in a mixed group.

I still find it a little daunting talking to the nurses and radiotherapists about what’s happening. I don’t want to sound like I’m complaining and my natural answer when anyone asks me how I am is to reply with “great!” And when I give them a big grin (as much as anyone gets a big grin from me) I get a little rush of endorphin’s and feel better anyway. What they want to know is of course, do you have any problems that we need to know about; because we do need to know.

So today I slept in which was great, except that I woke up at 2AM with a mind full of work and other things, so I took half a sleeping pill and woke up again around 8.

I’m definitely starting to get tired. I had the house to myself last night and straight after dinner I went to my music room. I picked up my beautiful old Takamine and my arms were like lead and so was my brain. After 15 minutes I decided that wasn’t happening. I’m working on some old and new material and really wanted to get into it, especially after attending an early show of The Lady Killers on Thursday night, who were awesome as usual. I would have taken a photo, but Jackie made a comment to the guy in row one being able to look straight up her nose, well I was in row 2 and would have got her epiglottis or tonsils (if she still has them).

We agreed that next time we go to Q Theater to go for row 4! These ladies are great medicine I have to say. If you get a chance, go see them (they appear to be avoiding family Christmases by gigging almost every night) they are fantastic and their commitment to every performance is as if it is the most important one they will ever do. Their talent is amazing and the strength in their voices remains as good or better than ever.

Anyway, I have anther blog to write before engaging in some quality family time and then home, early to bed for a Sunday visit for some more photons. At least the worst of the traffic is over for the year, so tomorrow I can sleep in till 6:)

If you’re still hear, I have had amazing support from friends, family, my social network and I am very grateful for it. I am also delighted that some of you have decided to get prostate tests, or other lumps that you think are nothing. One of the guys I chat with in the morning had a little lump on his throat that grew and his doctor told him not to worry about it. I lost a dear friend a few years ago who had a little lump on his face. It took his life.

I welcome your comments on my blog and when it comes to Christmas and presents, the best present of all (except for new guitars and a Corvette) is just being there and I really appreciate those of you who have been there for me. I’m also feeling for other friends at the moment who have much worse troubles than I do. It’s all relative. Do something nice for someone today, give them a smile, a hug, let them know you care. It costs nothing.