Will You Help Me Raise Funds for my Cancer Diaries Project? I’ll Play for You


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This Sunday at 5 PM (NZ ST) I will be performing my last Live Stream with Boosted to raise funds for my HAG Project. Yep, it’s a fundraiser as I will explain below. Every penny helps. If I can raise $1,000 Creative New Zealand will match it!

You Have Cancer

These are words nobody expects or want to hear.

A few years ago, I was diagnosed with prostate cancer after a routine blood test. I had no symptoms, but farther testing showed I had several tumours. I’ve lost family members and friends to cancer and while I kept a brave face, there were times when I was close to rock bottom. When you watch TV shows like American Idol, you see people who have amazing journeys as a result of adversity and I wondered if I might have one of those moments.

The Cancer Diaries

The moment hasn’t come yet, but perhaps you can help me turn it into one, even a modest one, through this Boosted campaign.

Smashed Chair

I have written a series of songs about my journey, starting with the day I threw my director’s chair onto the carpet, smashing the chair and ripping the carpet. That motivated the first song in what I now call ‘The Cancer Diaries’. If I Could Turn the Table shares how I felt at that moment. Most cancer patients will relate.

A BHAG

I want to be able to create a legacy EP and series of music videos to tell the stories and donate it to the Cancer Society, with any proceeds going to them.

After I wrote the songs for The Cancer Diaries and looked at what I would need, it included everything from a jazzy bass to a gospel choir. I found the whole thing pretty intimidating and expensive. I, therefore, didn’t give the project life.

They say things happen for a reason. Maybe this is it.

Care to help me?

I am in remission and the last song in the Cancer Diaries turns this Boosted campaign into a BHAG (Big Hairy Audacious Goal). The song is called Dare to Dream. To make it shine, I need the backing of an inspirational gospel choir. In the song, I ask what remission actually means. I sing about writing a bucket list of meaningful things I want to see and do, and the song climaxes with a huge rousing finale.

HopeI believe it will lift a lot of spirits and bring HOPE to people who have cancer or who have friends and family going through such a journey.

So how about it folks? Would you like to come on my next journey with me? Maybe help with a donation in honour of someone you care about who is on a cancer journey? Writing music is a cathartic process. So is listening and watching. I’m also keen to hear from anyone who can help with recording, backing music, video and of course that gospel choir.

Cost Breakdown

There are four songs on the EP. I estimate that studio recording of the first three will cost around $500 each. Recording the fourth song with the gospel choir is likely to be more in the range of $2,500 given the logistics. It would need to be recorded in a venue such as a church and will need a lot of gear and expertise. Mastering adds on around $800 leaving a couple of hundred dollars over for design.

These costs are based on not having to pay for backing musicians and choir. If I am able to oversubscribe, then it would be awesome to be able to give them koha too, especially in these difficult times when virtually no one in the music industry is earning a living.

What Your GP or Physio Should Tell you if you Have an Accident in New Zealand.


Ward 9As you may have seen from earlier posts, I had a back accident 15 months ago and after 4 visits to hospital, the most recent being of 7 days duration, I am still no nearer to getting the surgery my orthopedic spine specialist / surgeon recommended for me and requested ACC to fund.

What went wrong?

I’m going to tell you about 2 critical things. The first is about how I injured myself, by which I mean the primary cause and the second is about who I got referred to.

  1. The Primary Cause

Blackroom Relay for Life 2016 Print-47My latest accident didn’t seem like much. I was at my 6th Relay For Life in March last year and ready to walk a marathon distance (my goal, which I achieved) over 18 hours.

Setting up prior to the event and prior to heading for the survivors’ tent (I am in remission from prostate cancer), we had a 4 room tent to set up, and the poles and pegs were in a big bag in the trailer that was provided by the organisers to get our gear from the car park to our team site.

It was super heavy. No one seemed to want to get it out, including the guy driving the tractor. So I tried. Unfortunately, my back couldn’t take it and I ended up with a back strain injury that still has me off work today, 15 months later.

FC9I managed to do the distance through the use of medications like Panadeine and I had booked a couple of days annual leave after the event to recover, based on previous years experience. I also had a float and massage the following day, so I didn’t feel too bad after that. A bit sore, but otherwise OK.

A few weeks later, on ANZAC Day, in fact; I remember because it occured on the weekend before the public holiday (a Wednesday) and my wife and I had taken the Thursday and Friday off to go away in the Corvette for a few days holiday.

It had been raining, and on the Sunday before our planned holiday, I mowed the lawn and using the catcher to collect the heavy wet grass. I had to twist on an awkward angle to detach the catcher from the mower, twisted my back again, and the rest as they say was history.

You can read previous blogs but the key point was that whilst an MRI showed damage, ACC weren’t satisfied with the injury having been caused by the incident, they said it was age based degenerative disc disease. They said they would try to see if a previous injury could be relevant that they could tie it to which would convince them to cover the cost of the surgery and herein lies the problem.

A Skydiving Accident

IMG_0974Many years ago I had a skydiving accident. It was a tandem jump and if you have ever experienced one, you know that the customer is at the bottom and the Jumpmaster is on top. When she tried to flare at about 30 feet we got into an air pocket and instead of opening up, the parachute closed down. Instead of gliding to a running stop, we dropped and I took her weight on top of my own, on my tailbone.

It hurt like mad, but I was also flying high on adrenaline from the jump, so I didn’t really feel the pain that much. That night it was very sore, but we went to a big neighbourhood party and I found that bourbon acted as a great pain killer, so I managed pretty well and enjoyed the festivities as long as I didn’t make any sudden moves.

That night there was a bit of a storm and one of our trees was blown over.

The following morning, I was trying to clear branches in our yard, bent down and found I couldn’t straighten up again.

I went to physio who asked what happened and I told my story, the ACC record said “bent down and hurt back while picking up branches in garden”. I had 26 physio visits, was referred to Pilates and was assigned a personal trainer.

I did talk to them all about the sky diving, but it never made it to the ACC records. It therefore registered as a strain.

Another Accident

I was racing my land yacht in a 180 km enduro on 90 mile beach. I crashed at the northern end of the beach, picked myself up and raced back again and had to endure racing through snapper holes around Ahipara Beach, which is like racing on sheets of corrugated iron. Lots of pain, but again lots of adrenaline. For much of the race, I was going at speeds of up to 100 kph on a thin cushion as you can see on the video above, and with my feet sitting on a steering rod so all of my weight was on the lumbar area of my back.

At the end of the weekend it was a 5 hour drive back home to Auckland and a couple of days later, guess what? I was in the garden again, bending over and suffered intense back pain.

Guess what went on my ACC record?

Lots of physio for an injury sustained doing gardening.

So, when the specialist looking for reasons to not approve surgery (me having had every other treatment they could think of, for over seven months), they looked at what I had been referred for (back strain), looked at old injuries sustained in the garden, so probably not significant, all because I didn’t understand the importance of mentioning the crash or the sky diving on the initial ACC form. After all I was getting treatment. That was all I was concerned with at the time.

So What?

I might have got a very different response to my request for surgery if the primary causes of injuries had been clearly recorded, instead of lost to obscurity. Now I am chasing a Review of ACC’s decision not to fund the surgery which is going to be time consuming and expensive.

So if you are injured and covered by ACC, make sure that, irrespective of which straw broke the patient’s back, that the primary cause of injury is documented, even if you are happy that the treatment will fix the problem.

I’m now in a situation after many back injuries, that ACC are claiming age based disc degeneration disease and I am going to have to prove that I did in fact sustain some major injuries and that it was the cumulative impact of those injuries that has me now needing expensive surgery.

If I had made sure they had all the information correctly recorded, it would probably have been plain sailing for me now, instead of 15 months off work, the possibility of losing my job, and a long, expensive and stressful battle to get my back repaired so I can get back to work.

2. If Referred to a Specialist, Make Sure it is one who Operates in Your Local Public Hospital.

I was referred to a very good surgeon by my GP, largely because he is one of the category of trying everything else before getting the scalpel out and doing major surgery, which in my case will involve 2 surgeons for 4-5 hours and a 5-day stay in hospital.

Because of all the drama with ACC (New Zealand’s Accident Compensation Commission), in April I asked my GP (at the recommendation of my surgeon) to refer me to the public hospital. Whilst I have other medical insurance, it only pays (up to) 80% of the costs, which means I would personally be up for around $18,000 that I have to find myself. It could even be more because they won’t know exactly what they have to do until they cut me open.

So I was referred as ‘URGENT’ to North Shore Hospital on the 4th of April this year. I told them I was not working and that I could come at short notice and asked if they would put me on the cancellation list and they said “Yes, we have a cancellation list, is there anything else?”

I rang a few times, mostly talked to voicemail and the first time I spoke to someone they said “It’s only been a month!” To which I responded, “yes but I was referred as urgent.”

This month I had a flare up and spent 7 days in the Orthopedic Ward at North Shore Hospital. They did an MRI, hooked me up with a pain team and eventually once the pain was under control with drugs, they let me go home.

They told me that the stay would not be seen as my First Specialist Assessment (FSA) for which there is an expectation that you will be seen within 4 months of referral. They said that the Orthopedics Team knew about me and I would probably now be seen within 2 weeks. So they scripted 2 weeks of pain medication for me. They said I would get a confirmation letter from the hospital.

So I got out of hospital on the Sunday, waited until Wednesday and rang to find out when my appointment would be. I had to leave a message on their voicemail. I rang again on Friday and again left voicemail.

On Monday this week I got a phone call telling me that they did in fact have a date for me in late August. Today is the 17th of July.

So much for my 2 weeks of pain medication. I should have got the message when the doctor who checked me out of hospital laughed when I said I was expecting to be seen in 2 weeks.

So what?

If my GP had originally referred me to a specialist who also worked on the public health at North Shore Hospital, there is every likelihood that I would have been referred for surgery at the hospital in November last year, and could well have been back at work by the beginning of this year.

Now instead, I am still waiting for a First Assessment, and they will want to decide for themselves what treatment I should have. So while the logic behind my original referral was sound, the end result is that it set me back anything up to a year.

Hindsight is a wonderful thing, but the point I am making is that you, dear reader, may have a back injury like me, or perhaps a knee or shoulder injury from playing sport.

By learning from my experience, you might be able to have a better experience, receiving treatment within the same year of your injury and not jeopardising your employment and having double the stress. 

SUMMARY

Being in severe chronic pain for over a year is horrific. The potential consequences can be many including

  • losing your job,
  • becoming addicted to pain medications,
  • sleep deprivation with all that comes with that,
  • becoming stressed to the point of depression,
  • having no social life or family life,
  • which also results in relationship stress.

Here are two ways you can reduce the risk of experiencing what I’m going through.

  1. If you injure yourself doing something major and then aggravate it with a lesser injury. Insist that the cause on the ACC form is the major impact and the secondary injury is clearly shown as secondary. It might not matter now, but in 10 or 20 years it could save you from the horrible 15 months I’ve endured so far.
  2. If you need to be referred to a surgeon, even if you have medical insurance, get referred to one who operates from your local public hospital. You may not end up needing to go public, but at least you have viable options and it could save you many months in getting treated.

The Backstory on My Back


acc HELPHi, I’m ACC 18 Number 201905123684, I’ve swapped the numbers a little, although it probably doesn’t make any difference. I’m fairly well known.

My back story consists largely of digital files and probably a few manila folders and other storage media in several Accident Compensation Commission, medical, physio, specialist, hospital, surgeon, Occupational Therapist, Pain Specialist offices around New Zealand. They get shuffled from time to time.

Having said that, everyone on my journey has been friendly, thoughtful and most have tried to help me. A few, who I haven’t met, somewhere in the system have the job of helping ACC to not have to pay for my surgery, with considered justification. I’ll talk about that too.

Blackroom Relay for Life 2016 Print-47In March 2018, I hurt my back getting ready to set up for the Auckland Cancer Society’s North Shore Relay for Life event. The annual 18-hour relay, raising funds for cancer services which I have completed 6 times. I started with my family in honor of family members who have died from cancer, including my late father-in-law.

Then I got cancer myself, and during the fund-raising process I’m proud to say that over 30 men got tested for Prostate cancer because of my story, but I’m getting ahead of myself. I was given the honour of speaking at the opening, having refreshments in the survivors’ tent and carrying one of the flags in the first survivors’ lap. A humbling and emotional experience.

20170325_155154Trying, unsuccessfully, to awkwardly pick up a bag of tent poles out of a trailer provided at the venue by the organizers, for a 4 room tent, would set off a chain of events that has opened my eyes to the plight of many New Zealanders, who desperately want to work, but can’t, because the health system is underfunded, under resourced and inefficient.I became one of them.

I have a job. I hold a management role at the NZTA, a job I love with an awesome team of people who provide mostly Real Time Travel Information to motorists and travelers around the country.

It’s been 14 months since my injury.

My Occupational Therapist, GP, Pain Specialist and my Manager have agreed that I can work 2 three-hour days a week. ACC funds taxis to get me there as I could be a danger to myself and others, under the daily pain medication regime I’m on. That allows me to do something productive as well as socialize with my colleagues and not feel totally divorced from my work.

It was part of my back to work program, which has stalled since the Orthopedic Surgeon advised me that we had ‘painted our backs into a corner, having tried every alternative to fusion and discectomy surgery.’

I am incredibly grateful that the NZTA hasn’t dropped me under the bus and that I still have a job, although I am not currently able to perform my normal duties.

Over the next while, along with other activities, I’m going to talk about my life, one shared with my family and friends, colleagues and the health system.

I’m going to talk about what happened, about why I still can’t go back to work, why I am still waiting for surgery after 14 months. How ACC don’t want to pay for the surgery, how I can’t afford to pay for the excess if I went private, and my current experience with the Auckland District Health Board and North Shore Hospital, where I was referred as an Urgent Patient on the 9th of April.

I have not yet been able to connect with the person who makes appointments. When I rang them at the end of April, the hospital representative at the Patient Service Centre said they must see me within 4 months, and it was too early to ring. I was told it wasn’t worth ringing before the end of May and even then, not to get my hopes up. I rang today and left a message on their voicemail.

I have Prostate Cancer.

Mercy ScannerDuring the dark days of 8 weeks of radiation treatment, followed by chemicals, I think I had less than a week off work, on the odd day when I was so fatigued that I couldn’t function.

I arranged my radiation sessions to be around 7AM every morning so that I could go straight on to work afterwards, and still be on time. That’s how I roll.

I am now fortunately in remission, and my latest blood test last week showed a good result. The irony is that Cancer is fatal and there is every possibility that one day, hopefully decades away, it will kill me.

On the other hand, chances are very good that after back surgery, I will be a little sore from time to time, manageable with over the counter pain relief. Yet, for cancer I had less than a week off work and with a back injury it has now been over a year!

Mine is a common story, but one with which for the first 40 years of my working life I had no personal experience. I’d heard stories, mostly about people who allegedly don’t want to work, and enjoy living off the taxpayer’s dollar, but there are so many more people like me, who desperately want to work and contribute to society. If you have a look at my profile on LinkedIn you will read that my goal in life has always been to help people.

I consider my work important, a contribution to reducing the pain of traveling on our ever more congested road network by offering information about planned and unplanned events, about expected delays, alternative routes, alternate modes of transport, helping people plan for holiday road trips and much more.

I lead a team of awesome people who really care about you, their customers. It matters to me, but I’m being kept from it.

It’s funny, we talk about the cost to society of people who are needlessly killed on our roads. The cost takes into consideration the contribution they will make to the country’s GDP over their lives. Yet, the cost to taxpayers to get me back to work by providing me with back surgery, is far less than the cost of keeping me away from work.

As I said, mine is a common story, but it’s not one that people like you and I can easily relate to, unless we are directly affected.

Of course, in each instance, it’s not just the patient, it’s our partners, our family, our friends, our colleagues and of course the workload that must be done by someone else, or perhaps not at all.

seatI’ll try to make the story interesting, maybe even have the odd laugh. But let me tell you, this is no joke. I have gone from being super positive and highly motivated, with a bucket list of things I want to do which I prepared when I found out I have cancer, to being virtually trapped in my home, on the border of depression, not being able to stand, sit or lie down for any length of time without significant pain.

I’ll share an email I sent to ACC after having read a report prepared for them by a specialist, who said that “The patient appears to be doing reasonably well”.

Interestingly, this person who was paid by ACC to investigate my case did not once speak to myself, my GP, my Orthopedic Specialist, my Case Manager, my Pain Manager or my Physio.

I guess ‘reasonably well’ is a relative expression. I’m not dying.

The email is quite personal, but that’s really the point. I am a person.

Anyway, that’s it for now. I’m hoping to hear back from the hospital today and am getting on with other things in the meantime.

You may find my story interesting; you may be in a similar situation yourself. I know I’m not alone. I understand it was stated in Parliament Question Time last week that the number of elective surgeries completed last year was 10,000 ‘elective’ surgeries less than the year before. Reasons included strikes and funding. It’s little wonder it could take months for me to just be able to speak to someone.

Feel free to comment or ask questions. I know I’m not alone here and you may be in a similar situation to mine. I grew up as a fan of New Zealand’s welfare state. I learned that we are the system and that if we don’t stand up for something, no one else will either. I just didn’t know how bad it was.

So, you there. Have you had any experiences like mine? How do you get some action without ruffling people’s feathers and having your manila folder dropped down the list a little? Of course, that wouldn’t happen would it?

I welcome your comments.

 

 

 

 

Sensory Deprivation Float Experience in 1987


FC9This was my second ever float and I want to warn you that unless you really want to know more about the floating experience, my personal one, click on one of the word cloud buttons in my blog and find something that is more relevant to your interests.

When I first started floating back in 1987 it was something quite new. I was sales and marketing manager for a company that was very successful, but being embezzled by its CEO which was apparently a recidist pattern for him, but one I didn’t find out about until after it had cost me and some of my colleagues a lot of money and stress. I won’t mention the company, some of you will know the story. It’s really just to say that I was working really hard, bringing in some amazing 6 figure sales, and stressed, partly because at the time I knew something wasn’t koshur but I didn’t know what. I do wish some of the people who knew the past history of this criminal had warned me, because I would never have accepted the job and would probably have followed the career path opportunity to Santa Clara that stood before me.

So I go from there to the following experience, which is pretty long and unexpurgated. It’s basically my journal and pretty geeky. So here goes:

“I don’t know at this stage if there is any relevance or not, but shortly after my first float I felt a sensation in the region of the right-front part of my brain. I have felt it several times since, almost as if another sense is trying to find its way out. It has no other manifestation other than a slightly happy feeling accompanying it, which may be psychosomatic. It feels related to and yet isolated from the optical nerves.

Today, (Sunday) I had my second float, one and a half weeks after my first. I did not feel as stressed, although I did feel a need for an aid to relax. I was also keen to follow through on the principles of floating which I had started reading about. There was a force driving me to write down my experiences. A sense that something good was going to eventuate from this, far more than just relaxation.

The last week has been very tiring. Thursday was marred by arguments with the CEO and other stress-inducing problems. In the afternoon I left Auckland and drove to Palmerston North (About 350 miles). The Sales Engineer and I finished setting up a demo at the hotel we were staying in at 11:30PM.

The demonstration did not finish until after 4PM the following day, which was followed by further arguments with the CEO. It basically came down to, I was bringing in cheques from clients for 6 figure sums of money. They were being deposited somewhere and I was being told the clients hadn’t paid and to chase them for the money I had already handed in. I had never experienced a con artist like this and this being one of my greatest values, I really didn’t know how to handle it.

By 8:30PM, I was exhausted, driving back home I was starting to drift to the wrong side of the road. I decided to stay overnight in Taupo. I can’t remember the last time I felt so exhausted and overemotional. I write this because it relates to my mental state when I had my second float.

So back to the float. I was much more relaxed physically and settled in very quickly.

I did not experience the same heaviness in my neck and shoulder muscles, which suggests that much of the physical effect from the first float was a release of long term muscular tension”

Note, I am pretty much copying what I wrote verbatim at the time. It’s raw and was only really written as a personal journal. It’s quite interesting reading this 32 years later. I also want to note that I was not under the influence of any drugs of any kind.

“The muscles that felt tired and were unravelling this time were those I had just used for 1,200km of driving; arm and leg muscles.

-Mental / physical disorientation. The first example was a feeling as if I had my legs crossed at the ankles. Although they weren’t crossed (I checked), my senses were convinced that they were.

An ex-client once lost a hand in a chainsaw accident. For months afterward he felt pain in the fingers of a hand that no longer existed. (AKA Phantom Limbs)

I had a similar manifestation on several occasions that I was clenching my fists. Again I knew that my hands were open and relaxed (in the yoga nidra position, palms up). It was not just a feeling that my fists were clenched, my sense of touch had no doubt at all. However, I raised my hands, they were as I knew, open and relaxed.

I passed into and through the REM state much more quickly than in the first occasion. I find the REM state enjoyable and relaxing even if my eyes seem to be going to town.

I finally reached a point where my mind and senses were totally blank. This must be very similar to the point people seek with meditation. It was a sense of being nothing, or an infinitesimal body in a black void and being totally relaxed and comfortable with it.

I believe that this period lasted for only a fraction of a second, although it appeared to be a long time. As soon as I realised I was in this state, I snapped back to reality.

I have noticed a tendency, which makes me feel a little cautious, possibly stopping me from achieving total relaxation, in that my respiration rate is reduced to a mere fraction of normal, and there are in fact periods where I do not breathe at all, at least in comparison to my normal conscious state. The breaths are so far apart that when they come, they distract me.

I also noticed that after the first float, for 1 or 2 days, my time sense seemed altered. For example the time period between light changes at traffic signals seemed much longer, although intellectually I knew this was not so. (Weed smokers will probably relate to this, but I promise, I was totally straight).

Other than that there is little to remark upon. The second float was understandably a little anticlimactic and the endorphin level much lower than it was previously. I was advised by the manager to expect changes over the next few days.

Meanwhile, my driving muscles are feeling sore and I do not feel the same sense of euphoric confidence as I did the first time.”

I think like most experiences, the first is often the most moving. Reading back through this, it is probably very boring, but being a geek, I was trying to analyse the experience, as well as enjoy it. There were in fact physiological and psychological ongoing benefits from this which I will write about in my next blog.

As I have said previously, these blogs are personal and I share them in case they are of interest to someone and to remind me of previous times. If you haven’t floated before, or you want to get more out of your experience, I also recommend keeping a journal.

If it sparks your interest, go and visit Float Culture and tell them that my blog vaught your interest and Luigi sent you. If you are not in Auckland, just Google float tank and I’m sure you will find one reasonably close by. Anton, the owner of Float Culture told me that there are now 19 places in New Zealand where you can ‘float’. I’m sure that is a record and shows that there is real benefit from this experience.

 

 

 

My Latest Float at Float Culture and my Second Ever Float in 1987


Float 5So yesterday I had another float and massage at Float Culture. My back pain from my injury back in April is still hovering around 6-7/10 most of the time and I was so looking forward to the zero gravity and a great massage from Kim.

I had booked the Cosmic Room, which is a newer float tank, which instead of being a pod like the one I showed a photo of in my last blog, which was also cool, this one is more like an Alice in Wonderland meets Dr Who.

What is really cool about it is that while it is still a floating tank, you enter through a door and it is high enough to stand in, which is great when your time is up and you want to stretch out. I can’t say one is better than the other, when you are in the dark in total silence, floating on a silky nothing, it is really irrelevant. It’s also easier if you have a physical injury in regards to getting in and out.

Float 2When you come out after your float, the atmosphere is pretty cool. Bright colours and a picture of a galaxy awaits your heightened senses, especially if your body produces endorphins, which mine isn’t good at since my cancer treatment, along with low cortisol and virtually no adrenaline, I don’t experience the mental natural high that you will, but there are so many benefits from floating that it’s no longer an issue for me. A lot of cancer patients float. Relaxing when life is tough isn’t easy, but here you have no choice.

I think I’ll turn this into two blogs because the next one is going to be quite long and possibly boring unless you really want to know more about the floating experience in detail. Being a geek, I did.

When you have been in chronic pain for 6 months and any time you are awake, gravity wants to push your vertebrae together and you are constantly dopy from pain medications, being in an environment like this is bliss. I was pain free for most of the day yesterday and what you might take for granted (just feeling physically normal) was wonderful for me.

I met, Anton the owner of Float Culture and we had a great chat with him and one of his team about how there is a resurgence of interest in floating and sensory deprivation, some of the history of the origin of sensory deprivation tanks. More of that perhaps in another blog, but for now I just want to say:

  1. Whether you are physically or emotionally stressed, injured, tired or just want to try something new, I strongly recommend going for a float at Float Culture in Grafton.
  2. If you are totally relaxed, life is great, and you just want to try something new, refer to 1. You don’t have to be suffering in any way to get a benefit from it. The experience will still be amazing.
  3. Go with a friend, they have several floating rooms. But you might need to book a few days ahead. They have an app and you can also pay a subscription and get better pricing if you go regularly and even free passes for friends. One or two lucky people who talk to me nicely, might be able to get one of those.
  4. Have a float followed by a massage. Imagine having a great massage when you are already totally relaxed. If you’re thinking about a day spa and want to try something new. Do this.
  5. Tell them Luigi sent you. I want them to know that I am recommending them because I want them to do well. There have been some years where there hasn’t been a float centre in Auckland, which was frustrating.
  6. 6. Just do it. Make a booking today. If you’re not totally convinced, read some of these testimonials from other floaters.

My First Ever Sensory Deprivation Float – I’m Sold


Warning – Longish Blog, but if you want to know what the first time floating experience is like, you will find it interesting IMHO.

As promised in my previous blog, I am going to post a series of blogs about some of my experiences in float tanks.

September 1987

I was badly in need of relaxation and decided that the time was right. I had heard about floating previously and found a brochure at the Tourist Information Centre in Auckland’s Aotea Square.

I was very tense, there were some suspect things going on at my work (it looked like the company was being embezzled) and I was suffering from heartburn and chronic indigestion and had been constipated for three days. I feared I was becoming a candidate for an ulcer.

For some reason I felt very positive about the concept and that it could be good for me. My confidence was boosted by the fact that major sporting organizations including the Dallas Cowboys and AFL Teams owned their own tanks, for rehab of their elite athletes,  recognizing the benefits of sensory deprivation. The Cowboys apparently had TV screens in some of their tanks where players could relax on watch strategic videos.

On entering the Belleview Clinic in Eden Terrace, I was welcomed by a quietly spoken man who took one look at me and said “You haven’t floated before have you?” My disposition was obvious.

FC5He gave me a leaflet containing initial instructions. These were essentially:

  • Empty your bladder and bowels
  • Take a hot shower paying particular attention to your face so that you have no itches while you are in the tank. You don’t want to get salt water in your eyes, while scratching your face.
  • Put Vaseline (provided) on your private or sensitive parts to protect against the salt
  • Fit the supplied earplugs
  • Open the hatch in the tank, get in and close the rolling door.

Five minutes before the float ends, the underwater stereo system will pipe in quiet relaxing music. When the music ends, sit up whilst leaning your head back to avoid getting salt in your eyes, then exit and shower again to rinse of the residue Epsom Salts.

FC9Next I got a guided tour. The tank itself (a bit less modern than this one at Float Culture today) is an 8 foot by 6 foot by 4 foot fibreglass enclosure resembling a ship’s liferaft container before it is dropped in the water and opened up. It featured a rolling door through which you enter the inner spaceship which had 10-12 inches of water almost saturated with a solution of Epsom Salts.

So I had my shower, inserted the earplugs, applied the vaseline and climbed in.

The water felt warm, thick and sort of silky, almost sensuous. I closed the hatch and was suddenly in almost total darkness. I slid the hatch open again so that I wouldn’t forget where the knob was if I needed it…..

I tried to partially close the hatch but that didn’t work, so I closed it again and lay down. Then I sat up again, opened the hatch a little and closed it again just to reassure and orient myself.

Finally I lay down and tried to relax. I had been warned that my shoulder and neck muscles might start to hurt a little as they start to unknot and release their tension. The man told me to either breathe with the pain or rest my hands behind my head, flexing the muscles a little.

I tried both, but decided that a hands down version of the yoga nidra corpse position offered the most relaxing attitude for my body.

FC6So I relaxed. As my eyes adjusted there was a little light in the tank through the little indent patterns in the fibreglass.

My mind found it hard to cope with the fact that I was totally safe from external influences which might disturb the water or distract me. I kept slipping to one side as though I was balancing on a beam and for 3-4 minutes I found it hard to maintain my balance.

Eventually I achieved a level of equilibrium. I tried to keep my eyes open but found that I was easily distracted by light, sound and even nonexistent stimuli. I closed my eyes again achieving better results, however for the next 5-10 minutes I opened and closed my eyes a number of times, just to reassure myself.

Then I started to relax physically, but my mind was racing, very much the same as when I would go to sleep at night. When you are not experienced in relaxing, you can try too hard.

I felt a spinning sensation. I was hardly moving more than a cm per second and only for a tiny distance and then I’d stop by gently touching the wall with a foot or hand, but it felt like I had turned 90 degrees. This continued on and off for about 20 minutes. My sense of time was distorted.

Yes indeed, my shoulders were getting heavy and tired. Good, it seemed I was doing something right.

Now I moved into a conscious REM State. It was exactly like the first stages of sleep in which dreams that actually take  microseconds appear to take much longer. Yet I was conscious and could feel my eyeballs darting all over the place under my eyelids. It was an interesting feeling but the more I tried to analyse it, the more my consciousness started to return.

I knew that I was reaping rewards physically but mentally, because I was constantly analysing the experience, I wondered if I was wasting the opportunity.

Next thing I knew, time had passed and I was being gently roused by music from the underwater speakers which reminded me of the whale sounds on Pink Floyd’s Meddle album. It was soft and repetitious but relaxing. It only seemed to last about 20 seconds but it was actually 5 minutes.

I leaned my head back, protecting my eyes from the salt and opened the sliding door, then eased my way out and onto a wooden platform.

My shoulders and neck felt heavy and I was a little light headed but otherwise I felt normal enough.

I busied myself in the shower, washed and shampooed my hair (yes I still had hair then), making sure that all the Epsom Salts were rinsed off. Having dried myself off, I dressed and went into the pastel colored lounge, which had comfy chairs, a booktable and a selection of drinks including many herbal teas.

Floating Book

The current edition available from Amazon

Although I only felt slightly light headed, things seemed to take an awfully long time. My time sense was distorted. I sat down, which felt better and picked up a book entitled “The Book of Floating” by Michael Hutchison.

I then decided that I should have a drink to replace lost fluid and selected a Peruvian Lemon Tea which sounded refreshing.

I tried to fill the jug, which was not only full, it had a ‘cup number indicator’ on the side which said it was full. I emptied a bit out again and looked down at the floor. The opiate-like action of my natural endorphins induced an unusual effect. I was getting two independant impressions.

The left hemisphere was telling me that it was about five feet from my eyes to the ground. The right hemisphere said “I know it is only about 5 feet to the ground, but my perception tells me it is nearer to 10 feet.” Talk about a well balanced split personality!

I enjoyed a mild dose of euphoria, enhanced by the monochrome pastel room. I finished my tea and had a chat with the owner who said he could see by my eyes that the float had been beneficial.

I went to pay and found that they did not accept credit cards. I got the impression that this was a bit of a tacit protest against new technology. I found it hard to accept that they took me on trust for the cost of the float and the book which I had decided to buy.

Driving away I felt very relaxed and couldn’t stop my face from smiling. I felt a time distortion at traffic lights, it seemed they had stayed on red for too long.

That night I felt I had to waste some of the beneficial effects as I had to attend a business dinner. This was Wednesday night.

Yet, when I wrote these notes on a plane from Wellington to Auckland 2 nights later, I still felt better than I should after a very tiring day. I looked forward to greater effects from passive floating more often in the short term, and experimenting with Super Learning (now used by Navy SEALS) which I read about in the book, and other possibilities in the future.

In short, I was sold!

The floating experience is different for each person, but this should give you a bit of an idea of what to expect first time. Please remember I wrote this 31 years ago and the technology has improved dramatically although the principal’s are the same.

Floating to Relieve Back Pain and Stress



Float TankI didn’t want to have Mental Health Week pass without posting something and this is going to become a short series on the benefits of floating in a sensory deprivation tank and my experiences with it. So ignore the next few blogs if you don’t have aches and pains or don’t suffer from stress.

I have been ‘floating’ for years and it amazes me that most people still don’t know it exists or what it does. I started a bit of a journal back in the 90’s about some of my float experiences and have always thought I would share it one day.

I’ve been off work for about 6 months due to a serious back injury and I have been taking a cornucopia of painkillers which means that I can’t drive and I’m often dopy and unable to concentrate for long. I’m doing physio and seeing a back specialist and trying my best to avoid surgery. Anyway, enough of that.

I’ve been going to a place called Float Culture where I lie in a tank like the one in this picture, which contains a solution of Epsom Salts (I think) and water at body temperature. You have a shower, climb in, float, turn off the light and relax for an hour. Typically there is music for the first few minutes while you relax and again at the end so you know your time is up. Sometimes I go into a meditative state and sometimes I fall asleep, and no you can’t roll over and drown.

Lately I have been combining it with massage and for a few hours I have been able to go from pain of around 7 out of 10 to almost nothing. Unfortunately it comes back after a while when gravity takes hold, but during that time it at the very least helps reduce inflammation and you feel like there is no gravity. Gravity is my enemy right now. Imagine having a great massage when your body is already relaxed.

The masseuse, Kim, probably doesn’t realise how much pain I am normally in, but combining her work (careful around the injury) and the float leaves me feeling so free of pain that is difficult to explain to someone who hasn’t been in chronic pain for a long time. Chronic pain and not knowing when it is going to end is extremely stressful, as is not being at work. If you have ever felt work was drudgery or you didn’t want to go, the feeling I have might be a bit foreign to you. I love my job and can’t wait to get back, but I don’t know exactly when I’ll be capable.

Another element of floating is that without any sensory input, not being able to feel where the water starts and ends, is that it is very easy to get into a trance-like state, effectively meditation. The difference is that you don’t need to know how to meditate. I often see people after they come out of their float room and they are radiating endorphins, your bodies natural opiates and often talk about having almost mystical experiences.

I have floated for lots of different reasons over the years, for relaxation, for creativity, to catch up on sleep, to alleviate jet lag (before or after a long haul trip) and, like now, when I have an injury. Whilst the pain came back, I slept all night (about half of the time I’m up for an hour around 2-3AM because of the pain) and my digestive system felt better. I also lost almost a kilo of weight over the 24 hours which is effectively a litre, even though I drank a lot. I didn’t realise I was carrying so much fluid! That helps too because a side effect of the drugs I am on is that you put on weight and more weight and a bad back is not a good mix.

On their site, Float Culture, one of the more recent additions to the floating experience in Auckland has a blog page where people share some of their experiences. I’m going to share a few experiences of my own. So if that interests you, you will find them by following this blog.

If you know anyone who is not claustrophobic and can do with a bit of inner or outer healing, or just an amazing relaxation opportunity, tell them to try it out and let them know you learned about it from me, or if you have had an experience, feel free to leave a comment. If you are not in Auckland, float tanks can be found in most cities around the world, just Google it.

They are popular with elite athletes, creatives, people with cancer and yet most people, including the health industry don’t even know they exist.

So if you’re interested in learning more of my experiences, follow this blog. If not, remember it for a friend.

 

 

How to Reduce the Number of Your People Dying of Cancer in New Zealand Even Though You are not a Doctor


IMG_5145Yesterday we flew to Wellington and drove over the windy Rimutakas for a funeral of a friend and family member who died of cancer on Monday. It all started with a lump in her breast, it ended with tumors in her spine and brain. A prognosis of months became days.

One of the people who spoke lost her husband late last year to cancer, she spoke with raw emotion of how life changing and devastating it still is to her. Several other people there had experience and have lost people to cancer or who are battling it. Five of the speakers shared the following words, driven by raw emotion “Fuck Cancer”. I think that’s the first time I have ever sworn in a blog and I don’t apologise.

I invite a comment from each of you who don’t know someone who has lost the fight with cancer or is battling it right now. Tell me that’s you and I will be thrilled for you. 1 in 3 Kiwis will get cancer. It doesn’t have to kill a third of our population. If you were told you had a 1 in 3 chance of winning lotto, would you go and buy a ticket? IMG_5165

I also spoke briefly about my journey. I’m one of the lucky ones because I’m in remission and she was one of the ones who was looking out for me and giving me moral support. It’s people like her (and another Shelley who has chemo every 3 weeks and had to sell her Auckland home to live in the country to cover the difference between what her insurer was paying and what she had to find to cover the cost of her teatment, that helped me get to remission.

In one of my songs for The Cancer Diaries EP, I wrote, “Isn’t it ironic, that the people you use as a tonic, are worse of than you?”

Early Birds 2018

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

She was also active on my Facebook Page Musicians with Cancer and other Maladies. She was also a great supporter of Relay For Life which as you may know, we are walking for 18 hours on the 10th and 11th of March at the Millenium Institute of Sport on the North Shore.

We talk about cancer being about OLD people. Many people say it is the Baby Boomers who spent too much time in the sun, smoking and covering their bodies in baby oil. But when I look around, I see a wide mix of people. Toddlers with Leukemia, teenagers with bowel cancer, people like myself and my friends who are (or were still working and expecting to for at least another 10 years. How about the younger people who have lived on a diet of processed foods, preservatives and the many other flavour enhancers documented on the packaging. Of course you don’t see those on the packaging of the fast food many people live on. Would you eat your favorite fast food if the packaging looked like the packaging on a pack of cigarettes? Imagine if they had pictures of obese people, diabetics and those with heart problems caused by eating processed food, along with ALL of the ingredients.

At the wake, after the funeral yesterday everyone had a cancer story and a common thread of discussion was about getting tested before you have symptoms and the time to get tested was typically agreed for people with no symptoms of around 30-40 years of age.

We talked about diet and lifestyle.Those are things that we have control to do something about. Getting tested early is no doubt what saved my life. I had no symptoms that I was aware of and it was a simple blood test that led to my diagnosis.

My friend, Colleague and supporter Lee, who continues to battle her ‘terminal’ diagnosis contacted me  told me I needed to watch a Netflix documentary called The C Word, starring Morgan Freeman. She said that she felt if she had watched it a year ago, she would still be working and not facing a death sentence. I imagine if you followed the learnings from the move and never got cancer.

I watched the movie with her recommendation. If you don’t have Netflix, you might find it on YouTube or elsewhere. If you were told you have a 1 on 3 likelihood of getting cancer, would you do anything different? Well I’ve told you now, those are your odds. What if helping out the Cancer Society with a small donation would help speed up some exciting world leading cancer research as well as help people who have been already been diagnosed with everything from free counselling, free support groups and even somewhere to stay when you have to stop work and travel away from home for treatment, also for free, which is a big deal if you can’t work and get paid during that time.

It’s taken me a long time to come to grips with the fact that there are some key things I have needed to change in my life. The key ones are, more fresh foods of more colours, more exercise, even when it’s hard to even get your body out of bed, attitude particularly avoiding bad stress (stress that is negative in nature and people who bring it) and having positive things to look forward to. I’m feeling really good now that I’m in remission. That wasn’t the case 2 years ago, but I’m a fighter and a survivor.

These days I focus on these things, but not to the level I need to. I still let things and people get to me, but I focus on what I can control. Right now I’m focused on having a first flying lesson next week and Relay For Life on 10/11 March (which comes with a need for donations, which is where I need your help.) Buddy can you spare a dime? I am really struggling to reach my target this year and all I need is some of my friends and readers to help me with $5 by going here. What can you get for $5? You might be able to save a life. Seriously, even by just discussing Relay and getting tested for cancer with friends you could make a difference.

Twenty people, that’s right 20 PEOPLE got tested because I raised the topic and even if some of them had been thinking about it, I helped tipped them over the edge. What’s even more cool is that not one of them has cancer. Wouldn’t you like to know you don’t have cancer?

Here’s a statistic for you. In the USA, around 38% of people WILL get cancer. How do you like those odds? Here are a few more stats from Medicines in New Zealand:

  1. New Zealand’s Cancer Rates are over 62% higher than the world average.
  2. New Zealand’s mortality rate exceeds Australia’s average by 8%.
  3. While survival is improving, New Zealand’s survival rates are less than Australia and US.
  4. Compared to Australia, New Zealand has much higher rates of avoidable cancer deaths.
  5. Out of 13 countries, New Zealand has the lowest ranking for access to cancer medicines
  6. New Zealand only funds 14% of highly effective available medicines for the 8 most prevalent cancer types.

IMG_5169This view on the flight home (no filters used)  last night was a fitting tribute to our friend Shelley who didn’t make it. It reminded me of the late Stevie Ray Vaughan singing The Sky is Crying.

While you are thinking about whether a slight lifestyle change is worth considering, or that like the 60% of people who won’t get cancer (by today;s stats) it won’t happen to you or yours, how about helping out those of us who will be spending 18 hours walking around the track at Millenium Institute on 10th and 11th of March by donating $5 to our team. I need 241 more donations. If all of you who read my blogs made that small donation, we could blitz it together. It’s easy and it’s tax deductible. Please do it today. It will make a difference.

If your loved one isn’t already on our shirts, we will be very happy to walk in their honor if you give me their names.  We are also open for more team members or even just come and walk a lap with us. We will remember them.

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!

IMG_3494The 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. From West Plaza

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.
  • IMG_4479I 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%”

IMG_2105Unfortunately 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.

IMG_2290The 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.

Early Birds 2018

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.

CLGR7749In 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?


IMG_0817

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.

IMG_4287Can 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.

IMG_2184 (2)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

IMG_4479Basically 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.

IMG_2061The 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.

lava lava

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.

Early Birds 2018

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.