Update and coping with cancer


It’s been a while since I last posted on this topic and I know some of you are more comfortable reading this than asking how I’m doing.

In a nutshell, I’m improving. My last test a couple of weeks ago was the first time my PSA levels have come down, although not as low as we need them to be. In 10 weeks I’ll have another test and we’ll hopefully see that it is trending down, which will mean tests every 3 months and I’ll be on the mend.

In the meantime I still suffer from fatigue 24:7 but not as bad as it was and when I’m busy and focused on doing things, I don’t notice it. But that also means that it is really easy to overdo it and if I have a really busy day at work, or even just at home, I pay for it.

I now have some nights when I don’t fall asleep at 7:30 or earlier, but it is still more common than not that my wife wakes me up somewhere between 8 and 9 to tell me to go to bed and off I trot, feeling ripped off both because I’m missing out on my time and our time and I feel bad about leaving her on her own each evening, while I trot off to sleep. It’s also frustrating that you feel tired all day whether you had 5 hours sleep or 12 hours sleep.

Anyway, what I’m focusing on is looking forward to things and trying to live in the moment. We have spent much of our lives looking to pay off our mortgage and reducing debt, rather than living life for today. Cancer makes you want to make sure you have taken care of your loved ones financially, but it also makes the bucket list more important. One of the things on my bucket list that I was confident I would never have is the new toy we bought.

carI have always loved Corvettes and now I have one and I love it. Hopefully my wife and I will have fun doing road trips and make lots of new memories. Living in the now isn’t easy and it is important to be financially secure if you can. It is also important to have fun and enjoy life, which isn’t easy when sometimes life feels like crap. It doesn’t have to be a cool car, it can be just looking forward to going out for lunch or catching up with a friend you haven’t seen for a while. It is important to have a focus that takes your mind off the fact that you have cancer. Doing things that make you happy creates good chemical reactions in your body and if you are creating endorphin’s that has to help your immune system.

I want to share a poem with you that reflects a bit of the feeling I had about living. It was written by Alistair Morrison and I hope I’m not breaking any copyright laws by sharing it.

Such a Good Boy

He never said ‘Die’ to the living

He never said ‘Scat’ to a cat.

He never said ‘Boo to a Kangaroo.

He never did this or that.

He always kept clear of propellers

Never spoke to the man at the wheel

He always said ‘thanks’ to people in banks

And always took food with his meal.

He never took umbrage, or opium

Or ran round the rugged rocks

He never missed school, or acted the fool

And always wore woolen socks.

He never sat on a tuffet

Or pulled out a plumb with his thumb

And never in churches left ladies in lurches

Or opened the OP rum.

He never pinched little girls bottoms

Or peered down te front of their necks

Considered it folly to covet a dolly

Or think of the opposite sex.

He never did anything nasty

He never got stinking or cried

Unmarred by one speckle, a permanent Jeckyll

With never a shadow of Hyde.

He never called anyone ‘Drongo’

Or even ate peas with a knife.

He never crossed swords with the overlords

Such a good boy all o his life.

When he finally died and was buried

His loving ones tried to mourn

They put at his head a tablet which read

“Here he lies, but why was he born”.

 

 

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


EarlyIt’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. Early hoodie

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!!!!

 

Where I first saw Martin Crowe play Cricket


Grendon RdThis is where I first saw #MartinCrowe play cricket. The Grendon Rd Oval. After school and weekends you would often find Martin Crowe, Jeff Crowe, Martin Foster (also deceased) and others playing cricket on the road. Little did we know that he would become a legend.
 
I wish I had gone to the funeral now, but I was just a kid who chatted with them as we walked down South Titirangi Rd after school. They were thoroughly good guys, but at that time, just ordinary school kids with a passion for sport. I think I would have felt out of place among so many dignitaries, so many legends.
 
I so felt for Hogan as he went through some agonizing times where he felt the world was against him, where misguided people ridiculed him, the classic Kiwi tall poppy syndrome. I think that took a lot out of him, but it didn’t stop him becoming a legend. Things people say, bad jokes and innuendos take a toll on people and affect their self esteem, often for life.
 
I am so happy that he received his accolades including the induction into the Cricket Hall of Fame.
 
His standards, his work ethic and attitude are an inspiration. He proved the point that if you put the effort in, day after day after day, you will get the results. I suspect that his commitment to his sport was one of the reasons he and Grant Fox got on so well, being another person who devoted so much of his time to practice, train, practice. Today many young professional athletes with natural skills frequently focus on the money and not on what it takes to be a star.
 
They say that if you do something for 10,000 days you can become expert at anything. It has been proven in sport, music and other areas. If you have the genetics to go with it, even more so, but ultimately it comes down to attitude and commitment. Also passion. For some people that is there from the start, for others it comes with success.
 
I hope that we as a nation are growing up and that those who like to shoot the tall poppy’s down think about the damage that they do to people. If you see or hear people doing it, don’t just stand by and watch.
 
Another man cut short by cancer and gone too soon. I do relate to Lorraine’s, Jeff and others comments about cancer saving him, giving him a chance to really think about what ultimately matters at the end of the day. “Authenticity, loving and full of prayer”.
 
As a cancer sufferer, I also tried one of the alternative treatments, because I was told he was trying it, a sea cucumber extract. It apparently helped him for a while.
 
As someone with cancer, I relate to his awakening and focus on living in the moment and enjoying whatever life throws at you. It’s hard to do and sometimes shit needs to happen before it really sinks in and even then living in the moment positively, day after day, while you undergo radiation or other treatments and wait each month for results isn’t easy, but it is important to stay positive and it was awesome to see him looking so dapper when he got his recognition.
 
When I do Relay For Life next weekend, I will be be remembering a kid ad his brother I chatted with walking down South Titirangi Rd when I was in my early teenage years. Just local Titirangi kids. I will remember watching him play in Cornwall Park, Eden Park and countless hours on TV.
 
RIP Hogan. You fought your cancer the way you played your support. With dignity and courage and you learned how to make the most of it with your friends and family. I am also reminding myself of my priorities, self, family and friends being at the top of the list. I doubt that you knew that many people suffering with cancer took strength from the way you dealt with yours. I’m grateful for you. We will remember you as a great person and a great Kiwi.

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.

photoAs 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.

iPhone 279The 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:)

 

 

12 People went and got PSA tests for Prostate Cancer


If you’ve been following my story, I’ve been asking for $5 donations for the NZ Cancer Society Relay For Life event where my friends and I will be walking around a track for 18 hours on 19 and 20 March.

I’ve also been encouraging everyone I can to go and get a PSA blood test AFTER checking their insurance cover, because as my insurance broker said to me once they found malignant tumors, “You are now uninsurable!”

image_1Today I was talking to one of my colleagues, who has also been a generous donor to this cause and he told me that he and 3 of his colleagues have all been to get PSA blood tests. That means that now 12 people have gone and had tests as a consequence of hearing my news. That is awesome!

Hopefully all 12 are clear and they now have a base line so that in future years they will be able to monitor their levels, which is how I found out that I have cancer. My levels weren’t high at all, but they were increasing consistently every 6 months or so, which alerted my GP to the fact that there could be a problem.

Thank you all so much for your support, whether it’s donations, offers to drive me around when I’ve been over tired, colleagues for supporting me when I’ve had time off work, cards, offers of places to stay for a break and the “how are you doing” comments, tweets, Facebook and LinkedIn messages. It’s quite overwhelming and I’m feeling very humbled.

Most exciting of all though is the people getting tested because of me. If I could save one life or reduce the impact on someone because they found out early, wouldn’t that be something! Go Team Early Birds!

Shuffling of Papers


image_4

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. iPhone 145I’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.

iPhone 274Thanks 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.