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.

 

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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.

 

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.

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.
• Music. 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.