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

As 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

My 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.

I 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

Many 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.

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My Injured Back Loves Float Culture AND my 4th Float in 1987

If you have been following these blogs, you will know that I have been off work with 3 bulging discs in my back. On Monday the surgeon told me we have now tried all non-invasive treatments and he has sent an application to ACC, our national insurer for accident injuries, for fusion surgery. The good news is that after the surgery has been completed it will simply be a matter of recovering and a 99% likelihood of getting back to normal work. Believe me when I say I am eager to get back.

Meanwhile, I’ve been going to Float Culture a bit more often  and I have to tell you it is having results. Yesterday I felt the least pain over a complete day since I injured myself back in April. I was down to pretty much zero inside the tank and about 3/10 when I got home after the massage from Kim. When I went to bed it was about 5/10, normally 7/10 and today the following morning, after my exercises, it is about 4/10. I didn’t have to get up in the night, although I did wake at 4.

I believe this is the cumulative effect of previous floats, which is amazing, because even with the drugs, this is the best I have been. It will be interesting to see how long it lasts. If you suffer from chronic back pain or other limbs, I strongly recommend you try floating together with massage after the float.

I don’t get anything for this, I’m not an affiliate or anything, I pay the same as anyone else, but tell them Luigi sent you:)

So back to the future and my 4th ever float from my journal in 1987

I fell into a relaxed state very easily this time. Nothing very interesting. I felt tension in various muscles that had been used in the last few days.

Several times I noticed that I was floating deeper in the water than previously. I take that to indicate deeper relaxation and less oxygen in my system. I.e. I was breathing more shallow.

I had a number of violent muscle spasms, some causing minor splashes. Not painful, but sharp and sudden.

A highlight was a sensation that I was a speck floating in a black void, with vivid white streaks of light like miniature comets racing in two opposing directions. It was like a 3 dimensional hallucination. I was in the middle, but simultaneously watching from the outside looking in. 

One other strange experience, another hallucination which was particularly vivid. I felt sudden euphoria after imagining I heard 3 musical notes, 2 of the same tone and one a major third higher, in an even tempo.

Getting out, I felt reluctant and disappointed at leaving my comfortable cocoon. I felt reasonably normal, though very relaxed as I climbed out and had a shower.

I was thinking that this float had hardly had any effect on me, as I buttoned up my shirt. It was only then that I realised I had put it on inside out. I then started feeling a little light headed.

I started feeling mildly euphoric and experienced something like tunnel vision. I found myself highly amused by the red dye which infused from a herbal tea bag in my cup. It appeared as though the tea bag was bleeding.

There was a guy sitting opposite me in the lounge, where I rested after the float. He grinned and laughed quietly to himself, arose and walked out. I grokked him. 

Coming home I felt an abnormal burst of energy and engulfed myself in gardening; hedges and lawns. I did not want to sit down and read, even though I had the house to myself. This is highly unusual for me as I am a bookworm and generally read 2-3 books and a magazine or two, more or less concurrently. 

Just as a footnote, regrettably after my cancer treatment, I no longer seem to produce much in the way of endorphins or adrenaline. So whilst I feel very relaxed after a float, I no longer feel the flush of natural opiates that most people enjoy after a float. The reduced pain I’m feeling right now though is more than enough reward. Perhaps I am now producing more encaphelins than normal. These are the body’s natural pain killers. That’s a plus. My back has now though, after writing this gone up to about 5/10, but for the first day in 7 months, yesterday I felt very little pain for an entire day.

Anyone with a major injury, or perhaps a condition like polymyalgia will appreciate what that means. Again, if you suffer from any form of chronic pain, I strongly recommend taking not one, but a series of floats. Constant pain 24/7 sucks, I can tell you. If that is you, what have you got to lose?

There are ways to make this economical. I pay a monthly subscription that not only gives me cheaper floats, but every couple of months they give me a couple of vouchers. There will be two first time floaters heading to Grafton some time in the next couple of weeks, one of whom is claustrophobic. She will try one of the rooms and can leave a door open.

 

Blogfade and a Back Injury

Have you missed me? I’ve been off the grid, after trying to be superman and  lift a heavy bag of tent poles out of a trailer for a 4 room tent at Relay For Life and following that up a couple of weeks later mowing wet lawns (Auckland right?), piling up the clippings into a barrow and then lifting them to head height to empty into a garden bag, the straw that broke the Cappel’s back.

MRI Result? 3 bulging discs on both sides of my lower spine, all touching nerves and causing me lots of pain in my back and legs. I had 3 (starting very early in the morning) day trips to hospital when the pain was at 9/10, each time they kindly shoved a finger where the sun don’t shine to check that it still had muscle control, because my left leg is very weak and I had no sensation surrounding my left knee and referred pain down both legs. Or maybe they did it to scare me into not coming back:)

I thought I was over that one with my prostate cancer which has been in remission for just over a year now!

It was a real eye opener sitting in the triage rooms and seeing how awesome the staff are, dealing with a constant stream of frightened, sick and sore patients. My hats off to the staff (and the volunteers who fed me) at North Shore Hospital.

So I’ve been popping morphine and other drugs, (off work for almost 2 months on ACC) to the point where my brain has been mush. It only hurts when I stand, walk, lie down with a pillow between my legs (for more than 4 hours) or sit (only on a wheat bag on a straight kitchen chair with another bag on my back as I look longingly at the couch). I can’t drive and my decision making is such that I would not represent myself or my team well at work. I’m good at putting things in the wrong cupboards or forgetting what I went into a room for.

I’m not complaining, the drugs are keeping the pain between 4-7/10 and whilst I hate not having a clear head, having no responsibility means I can focus on getting well and not worrying about dropping clangers at work where I really do need to be on my game. My wife kindly took 2 weeks of work at the beginning to look after me. I can now look after myself and walk to the letterbox and back. Not twice in a row though I discovered.

The good news is I am mending. Tomorrow I will be getting 3 Transforaminal Steroid Injections guided by x-ray to within half a millimeter of the 3 nerves (sounds impressive doesn’t it). I had one a few weeks ago and it got the pain levels from peaking at 9/10 to peaking at 7/10, so we’re hoping that this lot will bring it down to a level where I can reduce the meds so I can stay in bed all night and get my brain back to near normal and start planning my return to work.

Work by the way has been fantastic. I have really felt bad about not being there with my team at the end of the financial year, but conscious that if I don’t recover carefully it could be much worse. As it is I’ve been told to be extremely careful after the injections because my back pain may be reduced, but I will have to be really careful when the pain is down to not lift or do sudden movements which could set me back, so I’m expecting some physio to follow.

So I’ve been off most social media, blogs and anything else requiring concentration, but I have been thinking. About real estate and location based services and all the mistakes we make when we buy houses. As you know, I wrote a book a few years ago about using apps, maps and location based services. I’m now looking at a follow up course rather than updating the book. I’ve been thinking about this while I’ve been off and am keen to hear from anyone who would like to share mistakes or things they would do differently when they buy their next house.

I’m not looking for sympathy, but I’d love to hear some stories about homes you have bought and things you should have checked out first, maybe the neighbourhood, crime, amenities, the commute, property values, flooding or other things that you could have researched first. Drop me a comment. Apologies for any typos, I did proofread this about 10 times.

 

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

Yesterday 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?

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?”

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.

This 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!

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

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

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

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

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

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

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

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

External Beam Radiation

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

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

The side effects to consider were:

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

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

Brachytherapy

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

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

Hormone Therapy

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

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

Radical Prostatectomy

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

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

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

But Wait There’s More

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

My decision

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

I chose external beam radiation for various reasons.

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

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

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

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

Another Choice

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

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

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

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

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

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

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

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

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

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

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A sign on the track at Relay For Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Will you join us in person or in your thoughts?

I’m in Remission, New Song for Cancer Album and Relay For Life

What a week I had last week, back to work blues, PSA blood tests for my prostate cancer and the usual agonising wait for yesterday’s meeting with my oncologist after my blood tests on Wednesday and more.

So the visit was short and sweet, my PSA levels have gone down a little, without the help of any more drugs and after prodding my stomach (not quite sure why and I didn’t ask) I don’t have to go back for another 3 months.

That’s a weight off my mind and I can refocus on getting on with life and I have so much I want to do.

First, there’s Relay For Life on 10-11 March. Team Early Birds is back for another year and I need your help. Our team is a little smaller than in previous years and if you would like to join us, we would love your company. You can get all the detail here.

If you can’t join us, it would be great if you could leave a little donation. Even $5 is tax deductible and it is an awesome cause. With one in three Kiwis getting cancer, anything we can do to aid research and the awesome work of the Auckland Cancer Society who have been a huge help to me, is welcome. Last year I raised $1,500. So far this year I haven’t got to $50. So either way, can you lend a hand?

My Big Project A Cancer Video EP, the Last Song

As you may recall, dear reader, I am working on a HAG project which is huge, creating an EP and video series for people with cancer and those who are supporting friends and family with cancer in some way to help them on their journey. If you missed that story, details are here and again I need help.

The last song is called Dare to Dream and after the good news again on Saturday, it seems the right time to share the story and lyrics with you. This song is intimidating to me because it has tracks that I can’t play including a sax and a gospel choir. I have no idea where to find either of these, but I am confident that with some help from my friends, I will.

The song is about being told I’m in remission and trying to process what that means. I used to think that being in remission means that you are cancer free, but when I asked Benji, my oncologist about that he said “You will never be cancer free. Once you have cancer, you have cancer. Remission means it is in control and you don’t need any treatment, for now.”

So for the foreseeable future I will be stressed out on the last week of each 3 month period and hopefully like yesterday, will be told the good news that I continue to be doing fine. Benji thought I was looking very well and looking back at photos of my pasty pale face of a couple of years ago when I was undergoing radiation treatment and dealing with chronic fatigue, I look great!

So if you’re still with me, here are the song lyrics. Super Better is an awesome book by Jane McGonigal which now has a game and a Facebook page. There is also a great TED Talk by her for those who don’t want to wade through the book.

Verse 1
I’m in remission, it’s a reprieve from my condition

In 3 months I’ll know more, for sure

Pinch me am I dreaming? Please explain the meaning

Before I close the door, does this mean I’m cancer free?
Chorus 1

The winter sun is crisp and clear,

I’ll write a list for 10 more years

Of things I want to do and see,

Things that mean the world and

Dare to dream, dare to dream

So much more for you and me

So much more that we can be

Verse 2
I’m in remission and I give myself permission

To embrace each new day as if the cancer has gone away

I’m going to grab a power up a SuperBetter lift up

Cause there are many on our team

Who need to dear to dream.
Chorus 2 (gospel choir for alternate lines)

Dear to dream

Watch me lift my hands up high

Dear to dream

Reaching out to touch the sky

Dare to dream

Take off like a bird and fly

Can’t believe this feeling

Repeats after break with lead guitar and horn section

So there you have it. I’m currently working on the demo for my second song called Who Stole My Words, which is about an incident where the chronic fatigue brain fog meant I couldn’t come up with simple words like current and channel to explain how I found myself upside down in an ocean kayak, without any fight or flight instinct because I wasn’t producing cortisol or adrenaline. I was upside down, underwater harnessed in thinking ‘this is interesting’. Anyway, I’m having a bit of a struggle going from fingerpicking to strumming and staying in perfect time with the clicktrack so I can add a walking bassline. But that’s another story.

So, can you help with Relay For Life, either with a small donation, or joining the team for 10-11 March in Mairangi Bay at the Millenium Institute? I’ll be there all night relaying with family and friends to raise money for the Cancer Society and in honor of the friends, family and colleagues who are fighting or who have lost their battle with cancer.

Do you know an Auckland based Gospel choir or a small horn section, or at least a sax player who could help with this song? The album will be Not For Profit by the way. I know I will have to pay for some of the work, which I will crowd source, but the end product will be free.

Want more info on my cancer journey? You’ll find it here. If you know anyone else who might find this interesting, please share it with them with my thanks.

Humor is the Best Medicine

Check out the great guitar playing on this video. As to the song, it reminds me of the week when I read the definitive book on prostate cancer. I had to but wish I hadn’t. Great lyrics though.

Remember Reader’s Digest’s Humor is the Best Medicine? Yesterday at work a guy came up to me and said, I can’t help you with your cancer, but I can make you laugh, would you like that. I said I would and he proceeded to tell me some corny jokes and I felt better for it.

I’ve written a couple of songs about my cancer journey so far. I haven’t got the energy to record them yet, but watch this space. Music is very much a way of dealing with issues, whether you are a listener, a songwriter or composer. It is cathartic.

As to my journey, in short, I had to stop taking my drugs because I stopped producing enough cortisol which along with the cancer drugs caused fatigue which has had me sleeping very long hours and having to take time off work. I am now also anaemic and they can’t tell me why. It’s not iron, it’s to do with my red blood cells. I also became intolerant of fructose and lactose, which doesn’t give you a great number of tasty diet options.

Anyway, my oncologist told me around Christmas to stop taking the cancer drugs until we figure out what else is going on and referred me to an endocrinologist. When they didn’t ring me, I rang them and they said “The soonest we can see you is 10th of March!”. So I’m thinking, no cancer drugs, all I am really good at right now is sleeping and I feel even more tired when I wake up than when I lay down and I have to wait nearly 3 months to see someone while those tumors could start growing again. So I rang the clinic every day or two and yesterday managed to get a cancellation.

So on Monday I will go and fill another bunch of bottles with blood and wait for Greenlane Hospital to ring me to arrange a test that sounds a bit like hooking me up to a line and shooting adrenaline down it to see what happens, because my fight or flight has become sleep or creep.

I’m very grateful that something is happening and hoping for some answers and feeling embarrassed and humbled when people far worse off than I am give me words of encouragement .

Meanwhile I am also looking forward to Relay For Life in March. I don’t know how much energy I will have, but I’ll be doing as much of the 18 hour walk with team Early Birds as I can at the Millennium Centre on the North Shore on 25th and 26th of March. I am so grateful to my family and friends for organising the team, tents, clothing and everything because I don’t have the energy for it. Of course they aren’t just doing it for me, we all have friends and family that are fighting or lost the battle with cancer and each person in the team is there for a bunch of people. We wear their names on our clothing.

This is raising funds for cancer research (and NZ is a world leader) where every single cent goes to the research, nothing goes to administration and everyone involved volunteers or pays for the privilege of being there. Buddy, if you can spare a dime, maybe $5, please go to this page. If you live in New Zealand, even your $5 is tax deductible, so the charity gets the lot and you get some back. That’s pretty cool right?

So here’s the thing. One in three people in New Zealand will get cancer in their lives.

Let’s try a little game:

Take everyone in your office or flat or home and line them up. Get each person to call out a number, 1, 2 and 3. Then get all the 3’s to stand on one side of the room and the others to face them.

Stand there for 3 minutes and look at each other and think about what it would be like if those 3 people had to battle cancer and how that would make you feel. Then put yourselves on their side of the room and think about how it felt when the doctor said “You have cancer”.

Then think about what if you could help reduce that number. Relay For Life is helping fund some leading edge research such as treating cancer like a virus. Imagine being able to take something like an antibiotic and the tumors just magically get flushed out of your system. Those people are being financially supported by you encouraging us to walk in circles throughout the night.

 

Helping Soldiers with PTSD through Music

As you know, a few days ago I set up a new Facebook page called Musicians with Cancer and other Maladies. It is about people helping other people. Today I came across a group that help soldiers with PTSD by using songwriting to express themselves and tell their stories in a trust environment, which is helping a lot of people, even those who are not musical themselves, or don’t realise they are.

Several years ago I wrote a song called Another Stretch in Iraq. You can hear a demo on my Reverbnation page. It was motivated by a newspaper story of a service woman who came home looking for some love and normality only to find that her man had left her for another woman. A common story sadly.

I joined a military blogging (milblogging) site and spent a good year or so talking to military personnel, mostly serving overseas at the time to get a feel (as much as that is possible, given that family members who served almost never spoke about their experiences when a civilian was present).

They trusted me and I learned a lot about their lives, their hopes, their agonies in losing brothers and sisters, general life and the isolation from their families where their fellow soldiers in fact became their families such that many could not and still can not adjust to civilian life without their brothers and sisters from he service.

When I was in Orlando some years ago, I played a couple of sets at a biker-friendly bar in Longwood and my song Another Stretch in Iraq was one of the songs I played with some great backing from the house band. I wish I had taken some photos because it was the classic bar with 30 Harley’s in a neat row out front, sawdust on the floor, the sort of place that Kiwis only see on movies and TV shows and that the cab driver thought I had no place being until he saw the friendly bear hug greeting I got from the woman who ran it.

After finishing the song a group of 6-foot something burly men came up to the stage. The biggest of them all came up to me with tears in his eyes and I thought I was about to become roadkill. He and his friends looked me in the eye and then he shook my hand and said I took him right back to the theatre at Desert Storm. He re enlisted twice and his son had just left for Iraq a week ago.

It was so rewarding to me that I had captured the emotions and environment with integrity and that the song gave them some comfort. I haven’t worked harder on a song and would love to record it professionally. It is on Reverbnation as a free download and is also on a couple of sites of free MP3 downloads that is made available to all serving US military.

Back to the Facebook page. There are thousands of returned servicemen in dozens of countries who suffer from PTSD. They come from all walks of life and many of them play musical instruments, or used to. Many of them can no longer motivate themselves and need a hand. Some of them join groups like the one in the video above. Many will not join groups, either because they can’t or won’t ask for help, because they don’t want to appear weak, or because they are still in service and don’t want to jeopardise their careers by showing weakness.

The concepts in this Facebook page mean that all they have to do is talk to a few friends and family that they are close to and trust. Then all they need to do is ask for a little encouragement, it’s as simple as that. For those who wish to or are able to contribute stories, I am hoping they will join the Facebook Group because it can only grow and flourish if they know about it.

I’m hoping that if you know people like that, you will share this post or the link with them so that they can be made aware that help is available and whilst it is not easy as it sounds, with a little help from their friends it can happen.

As John Lee Hooker and my idol Carlos Santana sang, Blues is a Healer. It heals those who play it as much as those who listen to it. If you can help someone pick up their instrument, or raise their voice and break the silence, you can have a profound influence on people’s lives and it can be as simple as my mate Rob sending me a TXT message saying “pick that gat up and play for 10 minutes man.”

If you know of anyone that could benefit, please share the Facebook group with them and perhaps join us yourself. My thanks on their behalf.