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 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:)
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.
- 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.
- 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.
- 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.
- 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:)
- 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.
- Focus on quality of life. Play my guitars more, write some more songs and have fun with my friends and family.
- 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.
At the closing ceremony of Relay For Life on Sunday at the Millennium Institute in Mairangi Bay, Auckland, New Zealand, we were told these are the worst 3 words you can hear in your life. As part of Team Hope Fighters, I was one of a group of awesome people who raised funds through a variety of activities culminating in an 18 hour walking relay. Our group walked the equivalent of Auckland to Blenheim and the full compliment walked the equivalent of Auckland to New York via Los Angeles, collecting over $120,000 for cancer research along the way.
I lost my first friend, my best childhood mate to cancer at the age of 9. Since then, like most people I have lost lots more. My grandmother, my father-in-law (who was a past President of the Lost Chord Club) and many more. I have relatives who are survivors and one who has only recently found out they have cancer and who didn’t want to tell me.
Relay For Life is a poignant event, which starts of with a Survivors Lap, lead by people who are in remission or still battling this horrendous condition. Many of these people marched for much of the 18 hours of this event which was very inspiring.
We walked through the night and I was pleased to survive sans blisters and managed just over a marathon
distance, which was a real achievement for me considering I hadn’t trained. One monster in our team was in training for a super marathon in 3 weeks time. I’m not sure exactly how far he ran, but it was in excess of 140km which was amazing.
During the night there were various activities including games, bands, the lighting of the HOPE lights, food stalls
including bacon butties (something my stomach couldn’t handle the thought of at 3 in the morning, despite the pervasive aroma which I would normally relish) but I did see a number of Police enjoying them after a brief team run in full kit, very brief I might say, but it was great to see them there. It would be really cool to see an official team from them next year:)
People created candle bags (LED Candles for safety) and left messages for loved ones which twinkled during the night, adding to the spectacle. Reminding people why we were there.
I made an interesting discovery at about 4 in the morning which was that it was pretty much just as painful getting back up and moving after sitting down for a while as it was being back on the track, so back I went.
Ultimately this was an awesome event, which despite having said after walking through the mud in Kumeu last year, that I wouldn’t do it again, I will most likely do it again next year, although I might train for it next time. After all I can’t be satisfied with only 44km in 2014:)
In closing many thanks to my personal sponsors, to all sponsors, huge thanks to the many volunteers and kudos to the cancer survivors. Cancer doesn’t respect age, gender, ethnicity or anything else and I doubt there is anyone who hasn’t been touched by it themselves or through a friend, family member or colleague.
One footnote. I’m seeing ads on TV for cycling for cancer and other events, which appear to be commercially funded. I didn’t see any news media at this event at all, despite the number of people all giving their time for free other than a TV crew who appeared to be recording a documentary. Where was the NZ Herald? Where were the radio stations? Where was TV One and TV 3? Where was the North Shore Times?
I’ve just got back from a break in Rarotonga, which was a wonderful place to visit for peace and rest. It was thought provoking even though thought was not high on my agenda.
I finished a piece of music I had been working on and called it Rarotonga, which you can find on Youtube and my About Songwriting blog. While there I attended a wonderful gospel church service where I had some great singing. This was followed by a bountiful morning tea put on by the open generosity of the locals.
Most of the church service was in Rarotongan Maori, however 2 words that I did understand were Climate Change. In a country where most of the land is very close to sea level this is a real challenge. You need to spend a little time on a South Pacific Island to understand what is at risk.
The one thing you must do when visiting a new country is visit with the people. 3 things stood out:
1. Everyone expressed their gratitude that we visited and explained that their country was entirely dependent on tourism.
2. Every person had at least 2 or 3 jobs and good pay was considered to be about US5 an hour. Other than Sunday’s, most people would be working 12+ hour days.
3. There was a sub economy operating below the cash economy. People trade goods or services. It might be people swapping fish for Taro or playing music in return for food and the ability to promote and sell merchandise such as CD’s.
As you do, when you deliberately disconnect from the grid, you catch up with reading and I got to reading up on Life Inc by Douglas Rushkoff. One of his arguments is that the world’s economies are driven by corporations, banks and other large entities who perhaps care more about themselves and keeping communities reliant on them than helping the people they serve gain any level of independence.
I was blown away by some of the examples of alternative trading systems he came up with, although I don’t know why. Barter as a concept is probably as old as mankind, but a new economy seems to be reemerging in innovative ways. I’ve known doctors who accepted fish or other produce from patients who couldn’t afford to pay fees in New Zealand. I’ve known plenty of people who share their specialties, a plumber who does work on an electricians home and the electrician is owed a favor by a motor mechanic who then does a job for the plumber for free. The traditional economy still gets revenue from the parts that are used, which includes all the traders and of course tax in all its forms.
From a business point of view, I use Bartercard and they are a great organisation who I recommend. They have Bartercard Maps which uses GeoSmart Maps technology to help you find what you need based on location. However, fundamentally it is still a form of currency and our accounts department and Inland Revenue treat it no different than cash. In some cases, such as accommodation I also sometimes feel that the product you get is a little less quality than you would get if you were paying cash.
One good thing about Bartercard I like is that it is local, at least it encourages companies to use local suppliers. Despite our position, I feel many organisations in NZ from Government Departments through to consumers do not consider supporting their local economy as a major factor in making purchasing decisions.
I don’t want to go into any real detail about the examples in Rushkoff’s book, because that’s what the book is for and you might want to read it. There are some great deals on Amazon. I don’t think you’ll find it in your local bookstore.
Here’s a couple of cool examples.
- CSA or Community Shared Agriculture. The concept is that people not only commit to buying their produce from a particular local farm, but they even commit to doing a small amount of work on it to help support it. This gives some security to the local farmer, but also helps build local community spirit and has people involved and doing something they would not normally do in their daily lives.
- In Japan, the Sawayaka Welfare Foundation came up with a ‘complementary currency’ where young people could earn credits for taking care of elderly people. Those credits, called Fureai Kippu can then be applied to the care of their own elderly relatives who may live in a different part of the country. Because it is by the people and for the people, many say that the standard of support they get is far better than if it was provided by commercial caregivers.
The book also has lots of ideas about local loyalty programs that serve to build greater loyalty to local traders and creates stronger community feeling, which can and should apply to any town or village. The people who work, have restaurants or businesses near your home, are your neighbors. We are often too quick to go and give profit to multinationals, when we could be supporting our local businesses and then complain when our potential customers don’t use our services.
To a degree this blog was motivated by my trip to Rarotonga and the music I wrote which you can listen to below. But it is also out of concern for our future. New Zealand, like Rarotonga runs the risk of becoming isolated. If a war were to strike overseas and our imports (including oil products, food, clothing and technology) how well prepared are we to continue living to the standard we are accustomed to? People in Rarotonga told us about the island running out of fuel for a few days and the chaos that ensued. How long would we continue our lifestyle without petrol and diesel?
When I was 8, my best mate died of leukemia, also aged 8. It was hard to comprehend, he had been sick for a long time and his family were very religious and somehow managed to cope. Since then another good friend died aged 20, just when life was going really well for her. Her partner who was totally devoted to her was obviously devastated and spending time with them at home and in hospital during her chemo visits was very difficult. She kept up a very brave face, but it was obvious that she was struggling with fear, dissapointment, frustration, why me, nausea, hair loss, energy loss, anguish for her partner and her family, I could keep going, but you get the picture.
New Zealand is highly regarded when it comes to cancer. When my late grandmother came to New Zealand on holiday, she had a collostomy bag, she had one kidney and had spent a year in hospital with over 50 operations. New Zealand was one of the few countries her doctors were confident about her visiting because of the reputation of care here.
We pay taxes for health care and some of it goes to research, but there are many more services that are essential, and today I have a Canteen bandanna around my neck as a tiny contribution of recognition to some of the services that Canteen facilitates.
One of the most important ones in my book is support. There is noone better to help a young cancer sufferer than someone who has been through it and uderstands what they are experiencing and going through. Noone else can really empathise.
According to a statement on Infonews there are currently 12,500 young people up to the age of 24 living with cancer or a sibling and this grows by hundreds each year.
The $4 donation I gave seems pitiful, but if 4,000,000 of us do it, it might be a different story. There are other opportunities. There are a number of bandannas on Trade Me signed by celebrities. There was supposed to be one signed by Elle McPherson, but I couldn’t find out, so I’ve put a bid on one signed by Donald Trump.
Anyway, Canteen does an awesome job and I hope they raise loads of money for this important cause. Let’s make these young people’s lives mean something and give them a lending hand.
I’m also planning one or more songs about cancer, but you’ll have to keep an eye on my Songwriting blog in the coming weeks to learn more about that.
With the state of the economy,things are going to be tight for a lot of people this Christmas. According to the NZ Herald this morning, “The trend in supermarket and grocery sales have been declining since March , the longest trend since the series started in 1995.”
First of all I need to admit that I got it wrong. I thought that with petrol prices going up that we would be like frogs who get thrown in a pot of cold water, that we just put up with the rises, but the reduction of cars on the road in Auckland is clearly noticable.
Last year the newspapers were full of stories of domestic violence at Chistmas time and womens refuges were overflowing with people hiding from their partners or other family members. I suspect this year will be much worse. The retailers are suffering as are many sectors of the public, who won’t be able to spoil their families this Christmas. The pressure on low income families will be particularly bad, and as I have blogged before, the retailers have been giving delayed payments and interest free terms for so long that many people are in debt up to their eyeballs already.
There is also likely to be an increase in burglaries as those who can’t provide for their family or young people whose hopes for cool presents are dissapointed decide to help themselves to other people’s property. Most at risk will be people who leave their homes vacant while they head to their batches or camp grounds. I’d recommend they look at their home security and communicate their plans with their trusted neighbours.
Is there anything you can do to help? There will no doubt be many Christmas Charity events. Why not check out your neighbourhood and see if there is anywhere you can help. My brother in law alway made his children pick on of their brand new presents and take it to the City Mission. Auckland City Mission is already well organised in their campaign to help people have a better Christmas. Each person who gives something at Christmas is going to feel much happier than those who didn’t. The Auckland City Mission will be hosting a Christmas dinner for 1200 people and need gifts and support. They have a page were you can find drop off points where you can leave a gift. So when you are off doing your shopping, buy something extra and feel good about putting a smile on someone’s face. I will.