Fighting Cancer with my Family and Friends at Relay For Life 17


2017 shirtGreetings friends. This is a special weekend where we remember those people we have lost to cancer over the years and encourage and embrace those of us who are still fighting this horrible disease.

As you can see on the photo, the team that my daughters created is called Early Birds. That’s because those who get tested and find out early that they have cancer are much more likely to survive and have a good outcome than those who don’t. I am so proud to say that due to my pushing over the last year and a bit, 17 people have had PSA tests and as well as knowing they do not have prostate cancer and in one case no breast cancer, they now have a baseline to allow them to catch it early if they do get prostate cancer like me and their survival rate will go up dramatically if they get a little blood test every year.

You will see the number 17 on the back and my daughter’s name on the bottom of the shirt, which was designed and made by her company Empire Promo. The 17 is made up of the names of the people I mentioned above, family and friends that our team is going to spend today honouring, all night and into the morning walking around a track at Millennium Institute on Auckland’s North Shore. You can see there are a lot of names and with a few late additions to the team there would be more if there had been time.

iPhone 280So today and tomorrow we will be walking to honour our people, to help fund research for accessible cures that save lives and don’t require that people sell their homes to pay for treatment, have somewhere to stay if they are coming to Auckland from out of town, like some of the great people I met when I was having radiation treatment at Mercy Hospital, and to thank those of you who donated to our cause, for your generosity. Whilst we do enjoy the event, the camaraderie and activities, we are here for only one reason, which is to save lives.

If you are one of the many people who donated to my account I want to thank you sincerely for your contribution. This is my 4th Relay and my second as a cancer patient. I am 25% short on my target of $1,000. If you would still like to donate, it isn’t too late and you can do so on my Relay For Life page here. I suspect most of you donated either for me (which is very humbling) and/or because of challenges you and people you care about have faced with cancer. I will dedicate laps to each of you and yours and especially to some very good friends who are still fighting the fight and aren’t in a condition to make it today. You know who you are.

I am planning to post a Facebook Live video at some stage so those of you who are friends with me on Facebook will be able to see a little of the event. For the rest, I will put something on YouTube after the event so you can see it too.

I won’t go on. You can follow me on Twitter under the handle of BluesBro, there will be some photos and tweets there as the weekend goes on. If you see them, please let me know. It would be great to share the event with you.

I do also want to send out a special thanks to my friends and colleagues at the New Zealand Transport Agency and Auckland Transport who have supported me in so many ways to date including donations, but much more than that. It hasn’t been the easiest of years and with awesome people giving me encouragement and helping me out during the tougher times, it has given me strength and Hope. iPhone 141

Give me Strength on my Cancer Journey


20160319_205646One of my friends kindly donated to my Relay For Life  event this morning which runs on the 25th and 26th of March and he made a comment to me which was “Stay Strong”.
 
I wanted to share my reply to him with you. My beautiful granddaughter gave me this rock to put a smile on my face.
 
I literally carry it in my pocket every day to represent strength and when I’m tired or having a tough day (which is pretty much when I’m tired which is most days) I give it a squeeze and feel the strength and solidity of this empathetic gift.

 
It is like a taonga to me. Maybe a little of her tiny bit of her Maori ancestry will rub off it into me; as she can trace her lineage to the canoe Mataatua. It’s not a magic bullet, but I feel love, hope and strength in this little rock, just as I feel it from my friends and family who have donated to my Relay For Life campaign and in many other ways.
 
iPhone 274

My granddaughter at one of our first Relay’s. The bag which she decorated contains an LED candle representing hope and remembering loved ones who had or have cancer.

Over the last couple of years I have learned about the strength that comes from having a network of people who care for each other, like those who still send me text messages encouraging me to play guitar. They have been so successful that I have written my second cancer related song and have been playing every day, but because I haven’t had the energy to play for the last year, even an average of 10 minutes every day has given me a bit of tendonitis and with a jam session coming up in a few weeks that I am really looking forward to, I am having to give it a rest for a few days.

I get messages like this every day.

I don’t want to name names, but you know who you are, there are a number of very close friends and a colleague who are way worse off than I am with their battles with cancer and ironically they are right there supporting me. I hope that I have been able to help them a little as well.
I’d like to finish with a little story and I know I get long winded, sorry:) I had two days this week when I really shouldn’t have gone to work, but I had really important meetings. Anyway on Friday I decided to do a little meditation on HeadSpace. I’m not good at meditation and I’m on day 3 of a 10 day program I started a couple of months ago.
So anyway, I go down to the carpark at 2PM for a quick 10 minutes of meditation. About 25 minutes later I get woken up by a very concerned colleague tapping on my window who saw me sitting in my car with my eyes closed and wanted to check if I was OK. Again, that’s another example of the support that is so important and I really appreciate it. As to HeadSpace, the first 10 days are free and you don’t have to use it every day. I like it and understand why so many famous people recommend it. If it works for me, it will work for just about anyone.
So thanks to those of you who are giving me strength with donations to Relay, sending me positive messages or simply asking how I’m doing. For others who are at various stages of your fight with cancer, I am thinking of you, ready to help in any way I can and as I walk around and around the track at the Millennium Centre, your names will be on my lips, in my mind and in some cases on my back on the awesome singlets Empire Promotions have had made for Team Early Birds. Note the number 17 is made up of the names of all the people we are walking for. 2017-shirt

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?

EarlySo 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”.

iphone-140Then 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.

 

Musicians with Cancer and Other Maladies is NOT about money or donations, or benefits, it’s about Friends reaching out for each other.


Yesterday we had the opportunity to catch up with some old friends we haven’t seen for a while, you know the kind, where the years melt away and it as if the last time you saw them was yesterday. Of course one of them also had cancer, you can’t escape it, so that made two of us.
There was classic discussion about how do you talk to people with cancer and there’s no easy answer to that. Don’t ask “How are you?” We get asked that all the time and you probably don’t want to hear the answer. Also, when we are getting treatment the doctors and nurses ask how we are doing and need to train us to share all the gory details, so you could find that asking that question leads to even more awkwardness. By all means do ask if there is anything you can do to help. I’ve had lots of kind offers, most of which I haven’t taken up, mostly because of fatigue, but the offers mean the world to me, truly.
One of our friends asked about my new Facebook group Musicians with Cancer and other Maladies and asked if it was about getting donations. The simple answer is a resounding NO. I’m not looking for money, I’m not after benefit concerts; and having trolled YouTube looking for something similar to what I’m trying to establish for other musicians, I can’t find anything. They all seem to be about donating to research or people who need help. So I understand why people might think that.
That’s great because it shows there is a need for something different. This is just about helping a friend. A lot of the videos I am posting are asking for money at the end of a heartbreaking story. There are groups who need that and we support many cancer charities and our Team, the Early Birds will be doing our 4th Relay For Life in March, but that is nothing to do with  this page.
s1560019-2What people need most is the encouragement of friends. For example when people shave their heads in support of cancer, what matters to the cancer sufferer isn’t the money, it’s the gesture of solidarity. When my beautiful empathetic granddaughter had her hair cut (which was her idea), it was so that it could be made into a wig for someone with cancer who had no hair.
So please, no money, I’m just looking to create an environment where people who have friends with a condition that makes it hard for them to motivate themselves get some support.
I’ve opted for musicians for a number of reasons, probably the most important is that playing music is cathartic, it generates good feelings for both the musician and the audience. But what I’ve found is that sometimes due to chronic fatigue in my case, or perhaps depression in other cases, you just can’t bring yourself to pick up your instrument, or if you pick it up, you don’t have the energy to play it.
motivational-txtHere’s an example of what I mean. I received this from a good friend who sends me a message every day. I also get similar messages from friends who are much worse of than I am.
I can tell you that even when I really feel too tired for anything and fatigue is a bitch, nothing like just being tired or sleepy, but I get the message and off I go to the music room and play. It helps my soul and spirit even if I don’t feel like it.
But this isn’t about me, it’s about creating a movement of people helping people. It looks like it’s going to be a hard slog to make this work but joining the Facebook Group even if you don’t know anyone with cancer right now, you will. Just knowing you have friends who care makes a big difference. If they see you post a comment or share a photo, video or story, you will make a connection.
This is an example of what I’m talking about. Not the advertisement at the end, just the concept of friends being there for each other.
Anyway, as usual this is turning into a book. My request for you is as a friend or associate of mine or of anyone that has cancer or depression or PTSD or whatever, join the Facebook group and tell a friend you are there for them. A lot of you are serial networkers and you can help by spreading the word through your network. You will be doing a good thing.
So send no money, just help pay it forward if you would be so kind. If music means something to you, if it has ever helped you, if your friends matter to you, this is a really small thing that could mean the world, even if just to a couple of people.
Thankyou so much. Feel free to leave a comment.

New Facebook page Musicians with Cancer and other Maladies


cropped-feb12-004.jpgSo there’s no point in saying you’re going to do something if you don’t do it, so I’ve set up the new Facebook Group called Musicians with Cancer and other Maladies. I couldn’t resist the pun because there are plenty of other conditions where people suffer similar effects which stop them from playing, practicing and plying the craft they love.

I would love you to join the group dear reader, whether you have a condition or not, because somewhere along the line, with 1 in 3 people getting cancer, then there’s depression, PTSD, Crohn’s, chronic fatigue and you are going to come across someone who could do with a little helping hand.

Since I told a few friends that I was going to do this, I have had messages and encouragement every day and have played every day. I’m not saying it has been easy, but I wouldn’t have played every day without them.

We are also doing Relay For Life again in March and if you have a spare dollar, you’re support there would be most welcome Last year I only managed about 20 km but my friends helped me raise over $1,500 out of a goal of $1,000.

Anyway, my Hairy Audacious Goal has begun and I want to thank Jane McGonigal and her book SuperBetter for helping me to motivate this, because it isn’t about me, it’s about thousands of musicians around the world who are struggling with cancer or other conditions.

If you have time, check out this short video about the book that got me motivated to start this new mission. It is about how we can use gamification to help with life challenges and ask for help from our friends.

 

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.

 

Christchurch Cancer Patient Denied Test by TWO GP’s


 

After all the effort that the Cancer Society commits to educating people about the importance of catching cancer early, two doctors telling a patient that he didn’t need tests, as told in Stuff a couple of days ago amounts to malpractice in my humble opinion.

There was a comment about a GP who might have felt uncomfortable with doing a DRE, I’m not comfortable having one and it’s a level of relationship I never planned to have with mt GP. That wasn’t what raised the alarm bells for my cancer, it was the fact that rather than fluctuating as normal, my PSA levels from a tiny little blood test, had increased consecutively over 4 tests.

All credit to my GP because I was still within what is considered normal levels, however biopsies found 3 then 5 tumors.

Mercy ScannerI’ve since had radiation treatment for 8 weeks and am now on hormone treatment ad my latest test showed a small improvement for the first time.

EarlyMy Relay For Life team is called the Early Birds, because if we hadn’t found them then, I would probably be in a similar condition to the person in this story. Now I have the possibility of a full recovery. At the pace the multiple biopsies showed the tumors were growing, un-diagnosed, I would have been facing a potential death sentence.

20160319_133814

I know a lot of people don’t like the idea of a finger up their jack-see but all I had to start with was a PSA blood test that takes about a minute at your local test lab.

To the doctors, I say read your journals, attend your local local GP group meetings and have at least one person in your practice that is up to date with Prostate Cancer. For the rest of you mortals, did you know it’s BLUE September? The Cancer Societies on many countries around the world are running events this month. Find the info for your country here. I’m going to a Poker Night at Sky City Casino. I used to go to a tournament every month but these days I am too fatigued and generally fall asleep at around 7:30 every night, but I’ve told my boss that if I do any good I will be sleeping in the following day:)

Don’t freak out about getting tested. You can just go for the PSA test for starters if you don’t have any other problems. Do get the test, BUT:

Sort out your insurance before you get tested if you have never been tested. 

When I told my insurance broker that I had been diagnosed with cancer, he said “Luigi, my friend, you are now un-insurable.” Imagine getting tested getting a positive result and not having health insurance. Even with health insurance we have had to top up the gap in terms of tens of thousands of dollars.

Bottom line, I choose life. I have a chance and in fact for the first time in 18 months my PSA levels have dropped 12%. Obviously I want 100%, but its the first positive sign towards recovery. If I had visited one of the GP’s that Graeme Pollard went to, my options (I don’t know anything about his prognosis) right now would probably be either prostectomy surgery (with high risk of nasty short and long term side effects) or hormone treatment at much higher doses than the pills I’m taking now.

I don’t know what our rights are in cases like this and it sounds like a GP can do and say what they like and not be held accountable.

Yes, there is a school of thought that it is better not to know. Sir Paul Holmes the renowned Kiwi broadcaster said on TV that he would rather not have known. I know my life expectancy is now longer than it would have been if I didn’t know and knowing has changed my attitude towards life. I want to enjoy it and am no longer thinking about what I might do if I save my pennies for when I retire at 70.

Here’s a couple of facts for a small country.

  • Around 3,000 men are diagnosed with prostate cancer in New Zealand a year. That’s 10 a day!
  • Around 600 men die in New Zealand from prostate cancer every year.
  • There is no miracle cure but research is happening at a fast rate and looking very positive.
  • Whilst we are a society that says (It won’t happen to me) 1 in 3 people in New Zealand will be diagnosed with some form of cancer in New Zealand.

Here’s an interesting little exercise. If you are catching up with your family or friends today. Play a little game. Put them in a line and get them each to consecutively call out 1,2,3. Every person who calls ‘3’ goes and stands on the other side of the room. Now tell them they have cancer, because we don’t have a choice over which one it is. If you wanted to make it interesting you could include all regular smokers. My father in law died from throat cancer from being taught how to smoke in the war and we believe another uncle has lung cancer from the habit he developed with free cigarettes while serving his country in Korea, but I digress.

If you are male, over the age of 50, get your insurances in order and go and tell your GP you want regular PSA tests, at least once a year. If he refuses, get a new GP that cares about you. Prostate Cancer is not a death warrant, especially if you get it early. Never knowing you have it, will very likely reduce your life expectancy. If you had a choice to live a bit longer, would you choose life?

Be an early bird.