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

Greetings 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.

So 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. 

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.

I’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.

My 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.

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.

 

PSA Going Down

For those of you who have been following my prostate cancer story, I’m really happy to be able to report that I had my latest visit to my oncologist yesterday who told me that my PSA levels have finally started dropping.

This doesn’t mean the cancer is gone, but it does mean that things are improving and whilst I continue to be really tired and have other side effects, it’s all heading in the right direction.

I can now go from monthly visits to 3 monthly visits for the next 2 years assuming things continue to improve.

Relay For Life was awesome, thanks so much to those of you who supported team Early Birds. We raised almost $7,000 for cancer research and had a great time doing it. It appears that many of the team have already committed to doing it again next year, even before they got over the aches and pains.

There are still some donations coming in and the North Shore event raised just under $190,000!

Here’s a sobering thought for you, but if you think about it and your circle of friends, family acquaintances and colleagues. One in 3 people in New Zealand will be diagnosed with cancer in their lifetime. If you wrote down a list of all the people in your family and then do those sums, this is a very important cause. Who will it be in your family or circle next? It’s the selflessness of people who fund raise for research that make a big difference and could save the lives of people like you and I in the future.

While I think of it, the Auckland Cancer Society Research Center ACSRC having an open day on Saturday 9 April. With TED Talk style presentations, a tour and loads of information about ground breaking research happening here in New Zealand. Click here for details.

 

Relay For Life 16 Thank you, Thank you, Thank you

It’s almost over and tomorrow is the start of the big weekend. I want to thank all of you for your amazing support for my journey with prostate cancer and Relay For Life 16 which starts tomorrow.

If you are in the neighborhood, the Opening Ceremony at the Millennium Institute will be at 3:45 PM and I will be one of a small group giving a brief speech, which is a huge honor in part due to the number of you who have donated to our team Early Birds. Following that we have the first lap led by those of us who have been told “You have cancer” and our supporters and partners. It would be great to have you join us if you can.

If you want to come and say hi or walk a lap with us, our tent is at site A8 right on the side of the track on the opposite side to to main Millennium building.

We have dropped to 5th place in the fund raising rankings, being beaten by 3 schools and a bank, which are hard acts to follow as we are just a small group supporting friends and family. But what a great job you have done! For me personally you have donated over $1,500, our team over $6,000 which adds up to about 4% of the total of around $150,000 which will help the Cancer Society save lives and make the journey easier for cancer sufferers like myself.

I want to give a special thanks to Gemma and Tracy, my daughters, who set our team up for me after asking what they could do to help me get through this horrible disease. They have been awesome. Also to Gemma and Mark for the awesome singlet and hoodies they designed and had made. The 16 (for 2016) is made up of the names of the people our team are walking and running for (for 18 hours!), so we can carry those people with us.

It’s not too late to donate $5 if you haven’t already done so, by going to my page at https://aucklandnorthrelayforlife2016.everydayhero.com/nz/luigi. It’s also never too late to go and get a PSA test guys and I am so proud that 13 of you have been motivated by me to go and get tested and as well as all being clear, now have a base line for future tests.

I will be posting pics on my Twitter account https://twitter.com/bluesbro so if you want to stay in touch and see what’s happening and send me some support.

I am very grateful to the Cancer Society for what they do and to your for your support. This isn’t just about supporting the 1 in 3 people in NZ who will be diagnosed with cancer during their lives (think about those numbers in terms of your family, friends and colleagues), it has also been a welcome distraction for me, something to be focused on and excited about.

As I go through this journey it is about having things to look forward to and making the most out of one day at a time. I am working on lots more things to look forward to, but most of all it is about friends and family. Things are cool, but ultimately its about people and you have helped me more than you realise.

I have never been one to ask for help. The support helps me, but the money may help you and yours in the future. The Cancer Society is not funded by taxes, rates or anything other than donations. So this is the last time and I won’t be asking again. If you can spare $5, please do so at https://aucklandnorthrelayforlife2016.everydayhero.com/nz/luigi.

Thank you, thank you, thank you. Now I have to get to work!!!!

 

It’s my birthday and have a request

I don’t ask for much and I don’t need much. I am the worst person to buy presents for, ask my kids.

As you may know I have prostate cancer and I am doing the Relay For Life, as per countless posts below. What I am asking for is for all my friends to donate $5 to my Relay For Life entry at https://aucklandnorthrelayforlife2016.everydayhero.com/nz/luigi. If you are in NZ it is tax deductible. The money goes to the cancer society, but I would consider it an awesome gift to me. Do it now.

I know $5 seems like such a piddly amount that it’s hardly worth the effort. But it is. I have a lot of friends and associates and if you all did that, it would add up to helping the cancer society deliver on the needs of a growing client base, big time. Every single person in New Zealand, diagnosed with cancer gets offered a pack with brochures and booklets giving them information about their condition and support services available to them. 60 people will be diagnosed with cancer in NZ today going by averages.

If you really don’t feel that this is something you want to do, here’s something else you can do for me instead. Guys. go get a PSA test. It’s just a blood test, and even if it comes up healthy, you now have a base line for future tests. I didn’t have any symptoms and his simple blood test led to us finding out that I have cancer. At this point due to my urging 13 men have had their blood tested and a woman has also had a lump tested that she had been putting off. 60 people are newly diagnosed with cancer in little old New Zealand every day. If you do, let me know, I’d love to know that I have helped more people.

How am I doing? One day at a time. The side effects are slowly reducing, but I’m generally nodding off to sleep from about 6:30-7PM every night which doesn’t make me very good company for my wife and family, but I have lots of support and lots to look forward to. My next meeting with the oncologist after another PSA test is the beginning of April, so I don’t have too long to find out how I’m doing.

The Cancer Society has asked me to do a brief speech at the Opening Ceremony of the Northern Relay For Life on the 19th of March at 15:45 before we start our 18 hour baton relay around the running track at the Millennium Institute. That will be a real honor and I have promised to keep it brief, but I will be thanking you. Come and check it out and keep an eye out for Team Early Birds.

So as to my birthday request. Got five bucks you can spare? Don’t do it for me, do it for one of the many people that you know or are related to that are battling or have battled cancer. 1 in 3 Kiwis get it at some stage in your life so you will be helping someone you know or care about. Don’t put it off. Do it now. If you know someone else who is doing the relay, donate it to their account, it all ends up in the same pot. And guys get that blood test.

Thanks from the bottom of my heart. In the meantime, I’m off to work. Busy day ahead before I catch up with my family tonight before I fall asleep again:)

 

 

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.

 

Let’s Nuke those Prostate Tumors

Since my first blog 6 men and one woman have decided to go and get PSA tests done for prostate and other conditions, motivated in part due to my blog. That is awesome, not only that they are doing it but also reflecting back to me. I hope I can increase that number through sharing my journey.

For those who I have motivated to get tested, I would like to reiterate the message from my blog about life and other insurances. If you test positive for cancer You Are Now Uninsurable. Please make sure you are comfortable with the level of your life and heath policies first. Once you find out you have a life threatening condition, even once you are in remission, it’s unlikely that you will ever be able to get health or life cover again. Even if you are confident you will be fine (like I did) and are just getting tested, (like I did) because its the right thing to do, or because your partner keeps telling you to (like mine did), if the test is positive, it is now too late.

First I’d just like to sincerely thank those of you who have left comments and messages of support, here, on LinkedIn, Twitter, Facebook and other places where I have a presence. I’ve never been in the position of recipient for messages like these before and it’s very humbling. I have also had phone calls and cards from colleagues at work and many messages and prayers from friends, family and acquaintances including some who have survived similar journeys.

A lot of people sent me messages of support for Monday for which my thanks. What you didn’t know is that I wasn’t able to start on Monday as planned, because they had so many people who are starting on Monday with both chemo and radiation.

They wanted me to start on Thursday, but I was down in Christchurch enjoying the balmy weather. It was 32 degrees on Wednesday and 28 on Thursday. I’m usually looking forward to coming home for the warmer weather but it was the other way around.

So how was my first day? New blog coming.