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

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?

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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.

 

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.

 

Shuffling of Papers

HOPE

Yesterday I arrived at the Oncology office to see my specialist, confidently expecting good news. I thought that he would be telling me that my PSA had dropped to zero or thereabouts and we could start looking towards 6 monthly catch ups, despite the fact that the fatigue and frequent bathroom visits continued.

He shuffled the papers and took a little while, with a big confidence inspiring smile told me that not everyone gets over the radiation quickly. He reminded me that no one gets cured of cancer, the goal is to achieve remission.

I took confidence from his smile and asked him about my PSA levels. He had another look at the papers, frowned a little and then told me that they had increased by about 50%. He said that I am in the 5-10% of people who take 6-12 weeks to get over the radiation treatment, gave me a form for another PSA test and a script for more Ural and we arranged another appointment in 4 weeks.

So, not what I wanted to hear. I’m still digesting it and what it means. I need to take some action steps.

1. I need to learn to pace myself at work and leisure. I’m not good at that. I’m at my best when I’m focused but when I get home I’m often asleep within an hour or less after walking in the door, even when I manage to get home early. Whatever I do one day impacts on the next.
2. I need to drink more fluid. It was much easier when I was going to radiation for 8 weeks and had to drink my bottle of water before I got there.
3. I’m starting to focus on Relay For Life and I hope you’ll join me in that, either supporting our team at Millenium on the 19th and 20th of March, either in person, or by making a $5 tax deductible donation Donation. $5 isn’t a big deal to any of us right, but I keep thinking what a difference we could make for people like myself if all of us gave $5. I’ve already used up the donations some of you have made with phone calls to the society, attending a support group (which costs money to run) and met people who get to stay at Daffodil Lodge for free because they don’t live in Auckland and it’s expensive to spend a couple of months here when you are getting treatment and not working.
4. I need to see a podiatrist as I have a sore foot. I don’t expect to do 50km this year, that’s probably not consistent with pacing myself, but I don’t want to be cut short by a minor injury either:)
5. As of this morning I’ve gone back on Pomi-T again. It didn’t help before, but I still have plenty and it can’t hurt.
6. Focus on quality of life. Play my guitars more, write some more songs and have fun with my friends and family.
7. Look forward to a better PSA result in 4 weeks time.

Thanks so much to you all for your support and positive vibes. It means a lot to me. I really am serious about the $5 donations. It may seem hardly worth the effort for the price of a regular flat white, but it truly is, both in lightening my spirit and in everyone giving a little, we actually give a lot. Can you do that for me? Don’t worry about the donations buttons for bigger amounts. I have so many connections, if each of us only gave that amount (which is tax deductible) it would add up to something meaningful for the Cancer Society, but each little one will also put a big smile on my dial and smiles generate endorphin which makes you feel good.

 

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.