Two More Sleeps Before Relay For Life

Two more sleeps and I’ll be getting up on Saturday morning to, pack and head off to the Millenium Centre in Mairangi Bay, with my old runners and my new Thorlo padded socks, hoping the weather man is right and it won’t rain.

A sign we walk past during the night in Relay For Life

I don’t do this for myself (well maybe a little). I do it for the 1 in 3 people in New Zealand, who, like I did, will get cancer. I do it for HOPE.

First of all I want to thank you all for your kind donations, for your words of encouragement, for sharing your stories of cancer, both personal and members of your family or friends, some who lost the fight to cancer and others who are still fighting the battle.

This has been the hardest year for me to fundraise for the Cancer Society, I’ve felt like most people are over donating and wonder if it is because I have been doing this every year for 6 out of 7 years. I’ve stuck with it because cancer is so insidious, so horrible, and to raise awareness that we don’t all have to die from it.

The 18 for 2018 is made up of the names of people living and sadly past who we are walking or running for on 10-11 March. The day after my birthday.

I do it because of the 20 people who were motivated to get themselves tested because of my story. That’s what Team Early Birds is about.

At the height of my cancer journey I didn’t have the strength to do this event. I visited the team two years ago and went home to sleep at about 3 in the afternoon and felt so frustrated that I wasn’t able to participate! Last year, I still didn’t have the energy to stay right through the night. I left at 10PM and started again at 4AM.

This year I’m back in boots and all, no matter what it takes. I’ve taken 2 days of annual leave to let my body recover. I’m looking forward to the survivor’s lap of honour where those of us who are surviving cancer do the first lap, wearing a purple sash.

It is such an honor to do this and very humbling when kids you’ve never met before come up to you and tell you they are proud of you, that you inspire them. Some wear shirts with words like I MISS YOU MUM on their backs.

I’ll tweet a few updates from the event if you want to stay in touch and might do a Facebook Live post, but I will be conserving the battery on my mobile so it lasts through the night.

So again, a huge thanks to those of you who have supported me on this Relay For Life journey. I am very grateful and feel very fortunate that there are people who have my back. That’s what kept me going through my darkest days.

Now if you have any influence over the weather, I really don’t want to do this event in the rain again. Can we hold off until after the weekend?

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What Cancer Patients Really Think When You Tell Them “You’re Looking Well” AND 4 Reasons I Need Your Help for Relay For Life

Contains the robes we wore when undergoing radiation treatment

Four of the people who have supported me in my cancer journey were  worse off than me. There was Shelley, who had a fall 2 weeks ago and we had her funeral on Saturday. They had said she had maybe a couple of months, but it spread faster than expected to her spine and brain. Then there is another Shelley who has to have chemo every 3 weeks for the rest of her life. Because she chose a low cost insurance policy (who thinks you’re going to get cancer?) she had to sell her house to get quick treatment to save her life. There is Lee, my colleague and friend who is still fighting. Finally there is my great friend of over 30 years, Daff, who we buried in December, right before Christmas.

I wrote this song about our shared experiences. Things that cancer patients say to each other and to the medical people who support them. Relay For Life helps people like us. Can you?

Isn’t it Ironic

©Luigi Cappel 2017

Verse One

When I’m down on the ground
Where do I go from here
I’m feeling flat, well fancy that
I’m feeling sorry for myself

Pre Chorus

I ought to feel ashamed
I get another day
Others aren’t so lucky

Chorus

But my friend says
In the morning, I put on my face
Wipe away my tears
You don’t see me then

Verse Two

I need to fight with all my might
Put on a happy face
Take off that frown, bringing others down
Impact my fate

Pre Chorus

Isn’t it ironic
The people you use as a tonic
Are worse off than you

Chorus

But my friend says
In the morning, I put on my face
Wipe away my tears
You don’t see me then
I’ve trained myself, sometimes it works
I paint a picture, that hides the hurt

People used to say to us “You’re looking well!” They were trying to pep us up and when I was depressed and fatigued (I didn’t think of it as that, just frustrated) I’d start my day looking in the mirror and say I’m alive and well and I feel great and try to get some endorphins going with a big fake smile. As you know, I shave my head. The other four all lost their hair. They were all struggling emotionally with that but they kept brave faces.

Read the last chorus and this will tell you what is really going on.

Out of 13 countries, New Zealand has the lowest ranking for access to cancer medicines. Relay For Life is working to help that and the Cancer Society who helped us all doesn’t get Government funding. Do you reckon you could donate $1 for each of my friends and myself, to go to the Cancer Society? That would be $5. That could make a real difference, truly. You can do it here.

Thanks for coming a little way into our journey. I will be walking all through the night for them and dozens more in two weeks time, with your support for which my gratitude.

 

How I Chose My Prostate Cancer Treatment AND Got to Remission

I have had feedback from many people that they are reading my blogs about my cancer journey and appreciation for my speaking out, when for many men this is a taboo subject. I really appreciate the feedback. It’s not exactly a comfortable thing to share. There are a couple of things I would appreciate even more. If you think these blogs are useful, please leave a comment or share it with others and if you can find it in your heart to do so, please visit my Relay For Life page. It’s a month away and I am desperately hoping the weather isn’t like it is today!

The biggest win for me has been that I am now up to 20 people who have been motivated by me to get tested for cancer, which is awesome. Prostate cancer does kill people. On Wednesday night I was standing by the window in a stinking hot room at the West Plaza Hotel in Wellington with no air conditioning, looking out at the night sky and hoping it would cool down and watching the Halberg Awards live on TV. 

In the memorial section, there was the face of Steve Sumner how died only a year ago from Prostate Cancer, I thought of a radio personality (I haven’t asked her permission so won’t use her name) who told me her father died from Prostate Cancer because he didn’t get checked until it was too late; and I thought of Paul Holmes who on one TV interview said that he wished he had never known he had cancer, but reading this story, I suspect he changed his mind as he realised how important life and his family were to him.

Anyway, I met with my urologist and my oncologist to discuss my cancer treatment options. They gave me an information pack from the Auckland Cancer Society and whilst being very diligent in trying not to let their biases show, explained a little about the options available to me. I have had a little experience with specialists who are very focused on the particular treatments or therapies they offer, and they should, because they shouldn’t be performing them if they don’t believe in them. But one size doesn’t fit all.

I was given four medical options. I did also try alternatives like Pomi-T for a long time and sea cucumber which tasted horrendous and cost a fortune. They didn’t hurt me, but the tumors kept growing.

1. External Beam Radiation. 8 weeks of radiation, which according to my oncologist has a 95% success rate for people at my level of cancer.
2. Brachytherapy. This is where they insert radioactive isotopes into the prostate and treat it from the inside out.
3. Hormone therapy. This is similar to the treatment they use on sex offenders to reduce their sexual urges, reducing testosterone and increasing female hormones. Testosterone feeds tumors, so less testosterone means less for the cancer to thrive on.
4. Radical Prostatectomy or surgical removal of the prostate gland. As it sounds.

I listened to their arguments for and against. I read the pamphlets. I joined a prostate cancer forum and asked other people who had prostate cancer about their treatments and found that they had all done a lot of research; and uniformly recommended the book Winning the Battle Against Prostate Cancer by Dr Gerald Chodak, which I mentioned and linked to in this blog.

I also went to a prostate cancer support group which was the most depressing thing I’ve ever been to. I appreciate the intent, but what an experience. One man had been told that day that he had less than 6 months to live and he was telling me how he was bewildered and horrified, struggling to comprehend a life of daily exercise, good diet and basically doing everything right and instead of looking forward to retirement in 5 or so years, he wasn’t going to be around for it; and a guy so depleted of testosterone that he had suffered massive weight gain, hot flushes, emotional swings, inability to reach an erection (and the lack of desire to do so with the depression of not having it) and more. I understand the purpose of the group and applaud the Society for providing this service, but it wasn’t for me. It could have just been that I picked the wrong day to attend.

With regard to treatment and side effects I want to reiterate that everyone is different. If you look at the side effects for any drug you take on the packaging or leaflet, most people don’t experience many of the potential effects, but the odd person could have severe reactions. I’m not trying to influence your decision. You need to make it for yourself and decide even how informed you want to be.

External Beam Radiation

As a poker player, 95% odds of success appealed to me. Imagine going into an 8-week poker tournament knowing you had a 95% likelihood of being in the money at the end if you followed instructions!

The center offering the treatment said they were prepared to provide my treatment at 7AM each morning, so I could go to work afterwards and have minimal disruption to my life.

The side effects to consider were:

• Hair loss in the area (not a worry)
• Mild fatigue (about that…)
• Frequent urination, weak stream and burning pain while urinating.
• Possible diarrhea, incontinence, impotence and proctitis.
• Reduced or no seminal fluid with ejaculation

Many of these side effects disappear a year or so after the treatment. Everyone is different.

Brachytherapy

Many of the symptoms are similar to external beam radiation, but instead of 2 months of radiation, it’s a brief surgery where radioactive seeds are implanted and that’s it. A key difference is that the side effects occur fairly soon after the implants have been placed and improve, where the symptoms of external beam occur later. Side effects include:

• Burning pain during urination
• Difficulty passing urine
• Rectal bleeding
• Sexual Dysfucntion
• Urinary Incontinence
• Bowel Incontinence
• Diarrhea
• Having to stay away from pregnant women (what if they don’t know they are pregnant?) and adolescent children.

Hormone Therapy

In the book I mentioned above, Dr Chodak explained that the treatment is more or less the same as what is known as chemical castration, the treatment that is used to stop sex offenders, because one of the primary side effects is that it reduces your libido or sex drive. Great if that means reducing the risk of a criminal reoffending, but not for a normal male, or in fact a normal couple.

• Loss of interest in sex (libido)
• Erectile dysfunction
• Hot flashes
• Loss of bone density and risk of fractures
• Loss of muscle mass
• Weight gain

Radical Prostatectomy

This is surgical removal of the prostate gland. The things that worried me the most were the risk of nerve damage and the potential to never be able to have an erection again as well as a reduction in penis size. Sorry of this is something that you find creepy to read, but it’s amongst the things I had to consider. If I was 70, these things might not be such a big deal, but I’m not and they are. In the USA this surgery is frequently done by a robot, but here it is humans and I don’t care how good the surgeon is, stuff happens, there is a high risk of at least partial nerve damage.

Ignoring infections and other things that can go wrong and potential risk of tumors crossing the enclosure holding the prostate gland in place (also a risk with biopsies and the Brachytherapy), side effects include:

• Urinary incontinence and/or urine leakage which can mean having to wear pads for 1-3 years or longer
• Trouble getting or maintaining an erection, potentially permanent
• Dry orgasms and loss of sensation and pleasure (and the impact of that on your partner)
• Infertility
• Penile shortening
• Bowel Injury

But Wait There’s More

So this is just scratching the surface. I read the book and it literally gave me nightmares. It wasn’t a short book and went into way more detail than what I have shared above. It was very thorough in explaining all of the details of the different surgeries and what factors you should consider based on the severity of the cancer, your age, your lifestyle. It helped me make my decision from a personal and clinical perspective, but I’m not sure I would recommend it. I was pretty upset and stressed out for a long time after reading the book. I can’t even bring myself to go back to it to quote parts of it to you.

My decision

I want to reiterate again that my decision was based on my feelings about the treatments, the people offering the treatments and my personal circumstances, my relationship (of course my wife was also part of the decision making process because it affected both of us), my age (I plan to be working for at least another 10 years), my family and obviously wanting to survive and live a productive and happy life.

I chose external beam radiation for various reasons.

• A 95% success rate is not to be sneezed at (unless you become semi-incontinent!). It’s no laughing matter either as people who have semi-incontinence can attest to.
• My granddaughter was 7 and I didn’t want to lost that special relationship of being able to sit next to her, have her on my knee or miss out on hugs. I was worried that if for her safety, I had to keep my distance that this  might have a long term impact on our relationship. You can’t get that back and she was too young to have been able to understand if I noticeably kept my distance.
• While it would impact on my ability to travel by plane for work, which I was doing 2-3 times a month, I could do some of the treatment over Christmas.
• Doing the treatment at 7 each morning meant that I wouldn’t have to take time off work.
• I wouldn’t have to risk sitting next to someone on a plane with radioactive seeds between my legs. Imagine saying to the airline, I’m flying on Friday. Please don’t seat me next to a child or a pregnant woman. What if the woman doesn’t know she’s pregnant? Okay please don’t seat me next to ANY woman. I wonder how many people do and if any women struggle with fertility as a consequence of having randomly sat next to someone on a plane or at a concert. I wasn’t going to have that risk on my conscience.
• The side effects seemed to be the least severe of the 4 options.

“I’m sorry, but you’re not in the 95%”

Unfortunately after 2 months of radiation treatment, when I had a series of scans to see how it went, the treatment was unsuccessful. I was in the 5% of people for whom it didn’t work.

I got many of the side effects, some very severe, but the cancer was still there. I may write about the year during and after the treatment for anyone that wants more insight into what it was like. From drinking a bottle of water every morning on the way to Mercy Hospital so that my full bladder would push my internal organs out of the way during the radiation treatment, being afraid that I couldn’t hold it, the painful urination, the loss of libido and erectile dysfunction, a feeling of loss of dignity, chronic fatigue, depression, needing to stay close to a toilet and on the other side, meeting some wonderful people, both fellow patients and those who helped me with treatment of my body and mind.

Another Choice

So then I had 3 more options. Brachytherapy wasn’t much of a choice given the radiation had already failed, so I had to go to hormone treatment, given I do not want the surgery.

This treatment was just pills, nothing more. I had side effects and continue to have some lingering effects. I had to make use of the counselling from a psychologist at the Cancer Society.

The end result was about 7 months ago my Oncologist said “You are in remission”. I had to ask what that means, because sometimes people talk about being cancer free. There is no such thing, but you can be in remission for years or decades.

This is important because I frequently read or hear stories about people being cured of cancer. As I understand it, there is no such thing. We all have cancer cells, they may be dormant or managed, either with treatment, diet or our immune system, but you do not get cured.

I am now on 3 monthly visits and in January had my 3rd one where my oncologist said my testosterone levels are good, my cortisol levels are lower than we would like, but I am producing some, I am still barely producing adrenaline, but my PSA levels are low and stable. I don’t have to go back for another 2 months.

Our 2018 singlets have just arrived. The 18 for 2018 is made up of the names of people living and sadly past who we are walking or running for on 10-11 March. The day after my birthday.

I’m in remission. I am focused on Relay For Life. Check out our Team Early Birds singlet. The 18 for 2018 is made up of the names of the people we are walking for over 18 hours. We are raising funds for the Cancer Society who do amazing work. They don’t take any money out of it for admin or running the society. It goes to research and supporting services like the psychologist who helped me and accomodation for people who have to travel a long way from home for their treatment. I’m on a mission to get people like you to donate $5 to this wonderful cause. Think of it as a koha for the time I spent writing this blog.

For those who are facing decisions like mine. I’m happy to answer questions and I will probably share more details of what it was like physically and emotionally to go on this journey.

In the meantime, I’m working on recording my EP of 4 songs called The Cancer Diaries. I am struggling with the rhythm guitar for the second demo, called Who Stole My Words and may need to call on one of the guitarists who offered to help me with this album to lay down a track for me. I hate asking for help but I need some with this.

I hope this has been informative and not an uncomfortable read. It is an uncomfortable condition as is any cancer and I hope that this blog is helpful. I hope that I can increase the number of people who get tested early beyond 20. I hope you will leave a comment, question, share, or make a little donation to Relay For Life.

 

 

 

Prostate Cancer, Gory Details, Treatment Choices and Relay For Life, Can You Help?

A sign we walk past during the night in Relay For Life

I’m writing this blog to ask for your help in raising awareness and fundraising for Relay For Life, to support the Cancer Society in raising funds they need both for cancer research and to support people who need help, from counseling to transport and even free accommodation when people have to travel out of town for treatment.

The Cancer Society is funding research amongst others in the area of treating cancer like a virus, which is showing a lot of promise and would mean that people like me in future might not have to go through the treatments and processes I went through.

Can you spare $5 in support or in memory of a friend or family member with cancer. You can do so here. You can do it with a message, you can leave your name or mention the person you are supporting, you can do it anonymously and if you are in New Zealand it is tax deductible. I’ll bet that you, dear reader, know at least one person who has cancer. Several of you of course know me, so there’s one.

Like my previous blog, if I get some donations, I will spare you some of the gory details that we prostate cancer patients have to deal with.

I would dearly welcome your donation, I’m struggling in receiving them this year. Where I am doing well, is that the number of people who have told me that they have been motivated to get tested for cancer has now risen to 20! Every single one of them is cancer free and more importantly know so and have baselines.

So in my last blog, I spared you the gory details of the first visits to the urologist and trading my dignity for hope.  Now I am going to offer to spare you details of some of the side effects of prostate cancer treatment, some of which I endured and some of which I chose not to risk. I had to make decisions based on choosing life (if possible) and the most suitable treatment for my lifestyle and work.

Some of those side effects included painful urination, short term or permanent erectile dysfunction, never producing seminal fluid again, the length of your penis being reduced, damage to other organs, chronic fatigue, loss of libido and depression. Some of these are experienced by most prostate patients and some depend on the choice of treatment, which of course depending on the seriousness of the condition may not be optional if you want to live. It’s also important to recognise that everyone responds differently to different treatment.

The next steps were a series of biopsies. I’ll spare you the details of how they do that for prostate cancer other than that they approach it from behind. Initially they found 3 tumors and confirmed that they were malignant. Then over the next few months, scans and 2 more biopsies confirmed that I had at least 5 and they were slow growing.

They gave me 3 options. One was to implant radioactive seeds into my prostate a treatment called Brachytherapy. Here’s more if you’d like to know more about how it works. I decided against it because it meant staying away from my granddaughter and pregnant women for about 6 months. Besides not wanting to change my relationship with my beautiful young granddaughter, how do you know if someone in your circle, or even randomly sitting next to you, say on a plane, is pregnant? They might not know themselves.on

Basically you are emitting radiation, which while not powerful, could have unintended side effects for others. The percentage likelihood, very slim, but percentages weren’t working well for me at this time and I wasn’t going to have on my conscience that I could be sitting next to a random stranger, potentially damaging a foetus she didn’t even know existed. Obviously some people do that. You can’t exactly hop on a flight and ask not to be seated next to a young girl going through puberty or a woman of an age that she could be pregnant and perhaps not know it.

The urologist was keen on this option. It would mean a quick procedure and a couple of days later I would be home. It would have minimal impact on my work, but given part of my work is reasonably frequent air travel and what I just told you, it wasn’t a great option. It was a treatment he would perform with my oncologist, who I had yet to meet. Specialists tend to favor opportunities for surgery or treatment that is their specialty of course and I respect that.

The next option was 8 weeks of almost daily radiation on this beast, which includes a CT scanner which would first make sure that every morning, after drinking enough water to fill my bladder and push my organs out of reach of the radiation (where possible), that I was lying in an identical position.

It would give me a 95% chance of killing the tumours. They could accomodate me so that I could go in first thing in the morning, if I got up early and have the treatment before work. They could do it over December and January as well so that would mean 3 weeks where it did not impact on my job.

The third option was to remove the prostate altogether, so if the tumours haven’t spread beyond the gland (pretty difficult to tell), they might get it altogether.

At this point I felt I needed to be informed. What were the risks, benefits and side effects? I thought back to watching Sir Paul Holmes on TV before he passed away from Prostate Cancer in 2013, saying that he wished he had never known he had cancer at all.

So how do you choose? I purchased a book called ‘Winning the Battle Against Prostate Cancer, Get The Treatment That is Right For You‘ by Dr Gerald Chodak. Oh how I wish I hadn’t bought the book, but I’m the sort of person who needs to understand.

It explained in gory detail how the different treatments worked (including some chemical treatments that we hadn’t discussed). Every treatment came with side effects and after effects. I hardly got any sleep for the week it took me to read this book. It scared the hell out of me and whilst you need to be positive, as stress has an impact on your body’s ability to fight cancer cells, it’s pretty hard to make an informed decision that WILL impact the rest of your Teamlife without being informed. I chose the book over Doctor Google, because it was recommended by cancer patient support groups.

So in the end I chose the 8 weeks of radiation and yes it had lots of side effects. Most of these are now over, 2 years later, but I’d be lying if I said it had been easy. If you’d like the gory details, please don’t pop $5 into my Early Bird account.

Naked barring my socks, each morning I lay on the scanner, watching them mark with a pen, where the beam should go, trying to hold on to my dignity and my full bladder

Unfortunately soon after 2 months of treatment they told me that I wasn’t in the 95% of people who found themselves in remission after the treatment, but I felt very happy for those who were.

I had side effects from the treatment and scans showed the tumours were still there.

I did work on positivity and put my energy into starting my EP The Cancer Diaries following suppRelaort from my friends when I didn’t have the emotional strength to pick up my guitars or play them. I also took up the offer of free counselling from an Auckland Cancer Society specialist cancer psychologist, one of the services funded by your donations. If you haven’t heard the DEMO of the first song called If I Could Turn The Pages, you can listen to it here.

I hope you don’t want the gory details and will find $5 to shut me up although if you have prostate cancer, or want to know more about getting tested or the journey you are facing, I’m happy to share my experiences with any individuals on request.

Several people have found it helpful to speak to someone who has cancer rather than well meaning people, who haven’t had the experiences or had to make difficult decisions.

Our 2018 singlets have just arrived. The 18 for 2018 is made up of the names of people living and sadly past who we are walking or running for on 10-11 March. The day after my birthday.

So instead of encouraging me to talk in more detail about the physical and emotional experiences I’ve been through in the last 2 years, please drop a couple of coins in the virtual bucket and lets celebrate life and hope and support Relay For Life 18 with my team. The Early Birds.

Prostate Cancer. No Pressure. Need Help for Relay For Life 2018.

So when my GP told me that my PSA levels had increased every test over the last couple of years when they should fluctuate, he said there was a risk that I might have cancer. He told me to lie up on the bed in his surgery, pull my pants down and my legs up and before I had a chance to ask, “is this necessary?”, his gloved finger went where the sun don’t shine. To say that it was unpleasant was an understatement, but I barely had time to feel embarrassed.

We wasted no time in making an appointment with a urologist and off I reluctantly went. I’m not sure what I was dreading most, being told I had cancer (If I did) or having yet more insult and injury to my dignity.

A sign on the track at Relay For Life

He was a very nice, gentleman who explained to me what was going to next and asked if I had any questions. I was feeling pretty much in shock and bewildered and was barely taking in what he said.

He asked me what my flow pressure was like when I peed. I thought it was OK most of the time. They told me on the phone that I had to arrive with a full bladder for a urine pressure test, so I was ready to relieve the pressure.

I had to pee in a basin that had a sensor in it and I thought I did pretty well, as he stood in the next room, watching the gauge. He then burst my bubble and said that my flow was well below average and asked, would I like a script for something that would make it flow faster.

I declined. Up on the bed and he started prodding my stomach and then asked me to pull my pants off, lie on my side with my knees hard up against my chest.

Now dear reader, you may be feeling squeamish, you might be feeling embarrassed, you might be thinking, I’m pulling out of this story.

You might be thinking, why is he telling me this? Is it necessary?

No it isn’t, but I want your help and if I get some donations for our next Relay for Life, I won’t share the next step with you and I won’t tell you graphically how I felt.

People ask why I share my story. I’ll tell you why. All around me people are either battling or losing the fight to cancer. One in 3 people in New Zealand will get cancer and we have to do something about it. We can do something about it. The numbers are pretty similar in the western world.

Relay For Life isn’t just for raising money for cancer research, it is about remembering the people we love, work with, our friends and family who are affected by cancer. It is as much a celebration of life as a sharing of loss.

We walk for 18 hours in relay, and the number 18 on our singlets if you zoom in, you will see it is made up of the names the 13 of us are walking for. Some have passed away in the last few months, some are battling, some have been gone for some time and some are in remission like me.

When you walk around the track and you see an 11 year old in front of you and on the back of his shirt it says ‘I miss you Mummy’, you know why you are there.

So to stop me sharing the rest of this visit to the urologist, how about going to the Relay For Life website here and making a small donation. $5 is tax deductible if you are in New Zealand and it would mean a lot to me to have your support. If you’re overseas, maybe you won’t get a tax rebate for it, but I’d still be very grateful if you could share the cost of a coffee.

These are the bags we put our clothes in, when we go in for radiation treatment. Each one of these bags represents a person being treated for cancer at any given time, just in this clinic

I hate asking for money, but it isn’t for me. It may will help you or someone you care about. Remember that number. 1 person in 3 in New Zealand will get cancer at some stage in their lives. Draw up a little list of people in your family and then separate one third of the names on that list. Imagine if those people got cancer. This is personal folks.

This year Relay is on the 10th and 11th of March. We got through the night to symbolise the cancer journey. You don’t have to walk the whole time, it’s a relay, but many of us like to do as much as we feel able. Our team is quite small this year. So far only 13 people. If you feel you would like to join us please head to the Team Early Birds page and let me or one of the team know.

Will you join us in person or in your thoughts?

Give me Strength on my Cancer Journey

One 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.

 

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 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. 

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.

What 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.

Here’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.

https://www.youtube.com/watch?v=-JjnYWvaSVU

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.

https://www.youtube.com/watch?v=fBhyv5rCqGc

Thankyou so much. Feel free to leave a comment.

New Facebook page Musicians with Cancer and other Maladies

So 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.

 

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!!!!