A Cancer Meltdown


So a couple of weeks ago I felt like things were going OK. I had my cool car and whilst I was feeling really fatigued, I was coping. Then a pile of little things got the better of me. I was late with my tax (which I hate doing, because I normally do that at the end of the calendar year, when I was doing 8 weeks of radiation therapy and was too tired any other time. I’m between test results, so anxious about what the next result will be. My arm is really sore after taking the splint off my wrist from a thumb strain (which impacts on everything from using a mouse to playing guitar. Super busy at work and a number of other things, nothing that would be beyond the norm for any of us in isolation.

20160503_161554.jpgI had words with my wife, something that is very rare and after she left the music room, I lost the plot. I picked up my office chair and flung it at the floor breaking the base and ripping the carpet.

This was not good for our relationship and the following night I was away on business, which was probably s good thing to allow us to both cool down. It was totally on me and something I haven’t done since I was a teenager. I do not have an anger problem, it’s just one of the many emotions that you go through with grief and with cancer. Some people cry a lot (I only get emotional like that when giving speeches at weddings or when I’m watching an awesome concert). I might get slightly bloodshot in the eye when I’m passionate about something, but again that is when I’m happy.

So the following night I found myself in a hotel in Wellington after a 4:20AM start and a long working day. I sat in my hotel room looking out the window and pondering the meaning of life from about 5-7:00, went to bed. No dinner, no TV, a few SMS’s with my wife and slept for about 11 hours.

Bottom line, I really needed to let off steam. But I wasn’t finished and this is the good part. Right through summer when I usually write and play a lot of music, play a few gigs,  I couldn’t play, I had lost my mojo. Well after this exercise I got it back and over the last couple of weeks have written the backbone of a new song, which was the catharsis I needed.

Here’s what I’ve got  so far. It’s a country song, I really like country as a genre for telling stories. I hope to fine tune it enough over the next few week to start recording it, because I like the song as a song, not just a form of letting off steam.

If I Could Turn The Tables

Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

Verse 2

If I could turn the tables I’d unsay the words that I just said

I’d turn down the volume of the voices that keep crashing through my head

Sometimes I feel like I’m OK, then the doubts start to shiver down my back

I’ve got to climb out of this hole and find my way back.

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Verse 3

I’ve got a lot to live for and each day I add on to my bucket list

I have great friends and family, there are special dates that I don’t want to miss

Sometimes I just want to cry, sometimes I wonder what its like to die

Then I think of those I’d leave behind and find my way back

Bridge

Every day’s a gift

Every day’s a steal

You can’t be the driver

Unless you take the wheel

Take the wheel

Chorus

Positivity is the frame of mind I ought to be in all the time

Everyone is nice and they want to give advice

Of a treatment they’ve heard of on the vine

Repeat Verse 1

If I could turn the tables I’d un-throw the chair that I just smashed

I’d un-rip the carpet that it tore when it flew down and crashed

Sometimes I feel that I can take no more, sometimes I derail from my track

I’ve got to get this cancer in control and find my way back.

-I’ll share a link once I’ve recorded it. It’s great to be back in writing mode and I hope I stay there. I’ve missed writing songs (other than my Pi project). I feel so much better having transferred my emotions into music.

I’ve been wanting to write songs about cancer to share, which might also help other people, be they the patients or friends and supporters. I have one other that I wrote but haven’t recorded yet, it’s more of a soul/reggae number which I wrote about losing my father in-law (also to cancer), but I thought I’d like to do a few covering different aspects.

Anyway, that’s me. Now I have to transcribe the song and publish it. If you’re still here, thanks for coming  on my journey with me.

 

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”.

 

 

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:)

 

 

Shuffling of Papers


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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.

 

Prostate Cancer Radiation Treatment is Over


I finished my 37 days of treatment last week and it was an unusual experience, a little emotional almost like leaving a job. They told me I was a model patient, I had followed all the instructions about diet and exercise and only had to get off the table once over the two months (because of wind). The average I’m told is 6.

IMG_2086

The faces in the lounge were changing and the people I had started to get to know had moved on and like me will be waiting for news of successfully shrinking or obliterating tumors. I had my last walk past the electric aquarium designed to relax you as you walk to the table. IMG_3489

I thought about asking if I could take some photos while the giant machine was rotating around my body, but I decided I didn’t have the energy and the answer would probably be no, because you can’t move an inch while it is operating, or risk damaging healthy parts of your body. I won’t ever forget it anyway. Mercy Scanner

When I finished, they gave me a lovely card full of congratulations handwritten by a dozen or more of the staff I had come to know, goodwill messages and instructions not too work too hard. It was like leaving a job. Very touching. I can’t tell you how important it is to have good people looking after you, who really make an effort to get to know you and keep your spirits up, whilst prepping you, which can be intimidating and embarrassing.

IMG_2153So I was out of my lava-lava for the last time and off to see the nurse.

lava lava He told me that my side effects are going to peak in around two weeks. I got a form telling me that the tiredness Apparently despite taking a drug to reduce the may last up to a couple of months after the treatment, then I should start feeling my normal self again. There are other side effects that may develop several months or years later, but lets get rid of the cancer first!

We discussed that the drug I am taking that reduces the side effects like having to pee painfully every hour and having to go again 20 seconds after I thought I had finished, my blood pressure was fairly high. Kind of understandable given what my body is dealing with but a side effect of the drug is that it lowers your blood pressure. That’s a little bit of a worry because my GP is always telling me that my blood pressure is usually low and better than his. I’ve had the odd moment when I get up and get that blood gone from the brain wooziness, but I’ve learned to get up more gently. It wouldn’t do to find myself on the floor in the middle of a business meeting!

He told me to take it easy with my diet because my body has now adjusted to the changes and I will suffer if I try to go back to everyday food too quickly. He was right, but that’s another story.

 

 

I have Prostate Cancer


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HOPE: Taken in the 2013 Relay For Life when I did my first marathon distance (took me almost the whole 24 hours!)

I was of two minds as to whether to share this, but it is one way of telling my friends, readers, colleagues and associates without having to tell the same story to everyone over and over. It’s not an easy subject to talk about. I’m not comfortable telling it and I know other people find it awkward to know what to say to me, so this is an easy option for all of us. Of course most don’t know yet because it was only a couple of weeks ago that I found out that it is serious.

Technically I shouldn’t know that I have cancer. I only know because my wife kept pushing me because of the health advertising and the fact that we have a huge number of people in New Zealand who have it.

I went to the doctor and said I believe there is a PSA blood test I can get and he firmly prompted me up onto the medical bed in his surgery and told me to drop my pants for the digit test. I didn’t want to but had complied before I even realized what was happening. I’ll spare you the details, other than that my virgin sphincter was sore and uncomfortable for a little while. Since that time I’ve become accustomed to being poked and prodded by strangers and am getting used to it. I know on the scale of 1 to 10 of things people endure, this doesn’t even get off the starting blocks. For now anyway.

The main point of this post is that my PSA at the time was 3.2. The doctor had been monitoring it in blood tests previously and whilst it was within normal levels, it had been increasing every test, always up. So we agreed at I should go and see a urologist.

I had a biopsy about a year ago and they found a few small malignant low grade tumors and I opted for active surveillance. I should have had another one 6 months ago but we seemed to miss each other. I tried eating very expensive sea cucumber TBL12, which didn’t agree with me very much in taste and made me feel queasy, but it was worth a try. Some people swear by it.  I also tried Pomi-T, a herbal extract approved by the FDA, but when I had another biopsy in October I was up to 4-5 tumors, still low grade but growing quickly.

So here’s the thing. There are a lot of stories and debates about whether you should be tested. Many people say that you’d be better off not knowing,  but if I hadn’t, in another  year I would probably be in a significantly worse situation and I’d still be in my 50’s. I might think differently if I was in my 70’s or 80’s.

I was keen to continue active surveillance which means more biopsies and tests, because most of the time I wouldn’t be thinking about it (but you do). The specialists strongly urged me to reconsider and having read extensively and asked lots of questions, I have opted for external beam radiation. If anyone wants to know why, I’m happy to explain my rationale, especially if you are going through the same process. Ultimately it’s a personal decision. They all have nasty side effects, but it has to do with age and lifestyle. I start radiation on 7 December for 8 weeks.

This particular blog is going to focus on whatever I feel like writing about, which is not business. It has always been my soapbox. So if you want more about technology, location based services and futurism, I suggest you ignore this one and follow me at SoLoMo Consulting and The Future Diaries.

The one hope I have from this, besides helping me process my feelings through this time, is that someone who was resisting the urge to get tested might give it a go. Already I know of one person who has been putting it off for years has made a doctor’s appointment. I read some statistics that said PSA tests have false positives and only 1 in a large number of people tested actually end up having cancer. Therefore getting tested is a waste of time.

So I’m that one in a large number whose life will be saved through getting checked out, despite having no symptoms or problems. I like living. I haven’t achieved everything I want to achieve in my work, haven’t seen all of the world and enjoyed lots of special family moments yet to come. I have music and songs to write and perform. I have many more trips to make around the sun. I still have a big bucket list.