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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The Backstory on My Back

Hi, 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.

In 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.

Trying, 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 9^th 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.

During 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.

I’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.

 

 

 

 

Thinking About the Consequences of our Education System, Bullying, our Health System, Coach Azul, Cameron Harold and FREE Publicity

I listen to a lot of podcasts. I was listening to them while commuting to and from work. Then last year I suffered a back injury and I have been waiting at home, consuming pain medications and exercising for what seems like forever, for ACC to approve spinal fusion and a discectomy so that I can get back to work.

Around a week ago they notified me that they are not going to pay for the surgery on the basis that I have degeneration in my discs that was not caused by the injury. It ‘rendered them symptomatic’ and I am now waiting for an appointment with the Waitemata District Health Board, whilst working on a review claim with ACC, New Zealand’s Government Accident and Injury insurer, who I feel could have had me back at work 6 months ago. They are still covering me for the back strain, but my specialist has said that they have tried everything bar surgery. “We’ve painted ourselves into a corner” he said.

I’m told that the North Shore Hospital spine surgeon is fantastic, but they also told me they have to legally see me within 4 months. In other words, just because it says “urgent’ on your case file, doesn’t mean you will even get to speak to someone anytime soon.

So I’ve had a lot more time to listen to podcasts while exercising, strengthening my core, whilst awaiting the needed surgery I still need, so I can return to work. I suspect there are thousands of people like me, numbers that get recycled in meetings focused on saving money. Ironically, when I work I am saving citizens much more money, but I digress.

One of the podcasts I enjoy is from Azul Terronez called Born to Write. If you follow me, you know I am passionate about writing and storytelling as a means of sharing a message on my various blogs and books.

The latest podcast from Coach Azul really resonated with me. The guest was Cameron Harold, a writer, entrepreneur, business mentor and founder of the COO Alliance.

He talked about some struggles he had growing up when he was told that he was  not academically in the top 40% of students and how he battled in his mind with that through school and university.

His story to becoming an entrepreneur resonated with me but from a different perspective, particularly the education part. It fascinates me how education systems seem to fail at both ends of the spectrum, contrasting with today’s apparent dumbing down of some generations whist the skill levels that create our greatest achievements are held back, limited to those who often achieve despite the system, rather than by its design.

I was one of those kids who didn’t fit in school, particularly once I got to high school. This was not because I wasn’t in the top 40%, but because I was in the top 2%. I’m starting to write about it, but not at this stage for publication.

I used my smarts to survive in a school (being a good guitarist helped) where the height of success was failing exams and getting into the school rugby 1st 15. In my school an A+ meant getting bullied for showing up the other kids. We had streaming, but being in the ‘Ac 1’ class also put a target on the back of your head.

Even teachers who tried to encourage kids to do well were on occasion beaten up and thrown down stairwells because the kids they tried to help were embarrassed in front of their peers. I liked sport (I played in previous schools, hockey and club soccer when living in Holland) but the thought of having to stay at school a minute longer than I had to (for training) was anathema.

The podcast I listened to this morning was about getting FREE publicity. I learned similar lessons to Cameron Harold early in my career, when I was racing landyachts as a hobby sport, and I was looking for sponsorship to send a team from New Zealand to the USA.

Me on my Class 5 Winger on 90 Mile Beach

I needed publicity to attract sponsors for a sport where one minute you see the yachts racing over the sand on a long beach or on the tarmac of an air base; and for the next half an hour or so, you sit there waiting to see them briefly again as they would fly around a mark, crashing into each other on 2 wheels. It was a great spectator sport for about 4 minutes of each race that could take up to an hour and a half.

I did two things. I got a well worn small book from the library. I don’t recall what it was called but it may as well have been called “Get the coverage you want by giving the media what they want”.

One of the things it said to do was to ask them what they wanted. That seemed to simple but I did it. I rang radio sports journalists, I rang TV, I rang magazine editors and I rang newspaper sports writers. I introduced myself and gave a quick pitch of why I was ringing, explaining the challenges of a fast exhilarating sport, with yachts on wheels doing over 100 kph on the beach that no one had heard of.

Next thing I found myself in the newsroom of the New Zealand national daily, speaking with the Sports Editor. End result, they got some great stories, we got global TV coverage, we got international magazines and radio stories, we got sponsors and our team (unfortunately I had to pull out at the last minute) went to the Nevada Desert and won the America’s Cup of Land Yachting! And I learned how to get more than my fair share of media coverage for my employers and my modest entrepreneurial ventures.

Ironically listening to Cameron’s story, and despite being very gifted intellectually, I didn’t do any university study until much later in life, because I spent many of those teenage years rebelling against a system that had no place for bright people. I’ve had a pretty exciting life so far and I feel I have made a strong contribution in my endeavours, but I also wonder if I didn’t live in the land of Tall Poppy Syndrome, how much more I could have achieved if the education system had acted on what they discovered about me and nurtured it.

Which sort of brings me back full circle to my ailing back. I have now sat down too long writing this and need to do some stretches and exercise as I wait for my number to be called by the Waitemata District Health Board for my first specialist meeting, so I can have my surgery and get back to my job. When you’re a number in the system, a few pages in a manilla folder, you are equally invisible if you want to work and be productive as someone who will quite happily live on a benefit.

Does any of this resonate with you?

 

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.

 

If You Think You Are At Risk of Getting Cancer

Sort out your insurance before you get tested, so that you know you will be covered if you do get cancer. As some of my friends know, it’s a very expensive condition. One of my friends had to sell her house to help cover the costs of treatment because her insurance cover only paid for 60% of the treatment costs and whilst going to public health is an option, this is something you want to deal with as quickly as possible.

Perhaps like me, there is cancer in the family, or you are getting into your 30’s or 40’s it is worth checking out cancer insurance.

We just found out that Southern Cross has optional Cancer Assist insurance. I wish they had told me a few years ago, although, like you, it never occurred to me that I could get cancer. It’s always someone else that I feel sympathy for.

Unfortunately by the time I found out, I had already been told “You have cancer“. Fortunately I did have income protection insurance with a one-off cancer payout, because the first thing that my insurance broker, Tom told me when I let him know that I had cancer was “You are now officially uninsurable.” Ironically I didn’t know that I had a policy that included cover and my broker volunteered to look for me, even though he didn’t sell me the particular policy. I am extremely grateful to Tom Fox of Canopy Group for helping out. If you need a broker, tell him I recommended him. He took a huge weight off my mind in a stressful time.

Fortunately Southern Cross medical insurance has paid a large chunk of the many biopsies, MRI, CT and other scans, radiation treatment, countless specialist visits and more, but if I hadn’t had those insurances, I’d be under some serious financial pressure right now.

As a male in New Zealand, you have a 1 in 9 chance of getting prostate cancer. If you had those odds of winning a lottery you’d think that was exciting right? Not quite so exciting with those odds of getting an illness.

I can’t remember how many people got tested because of my pushing and prodding, it must be getting close to 20, but I would be horrified if some of those people didn’t have cancer cover before they got tested and found they did have it.

So here’s my plea to you. Get cancer cover. Sort out your life insurance, then even if you feel perfectly healthy, get tested. Mine was found early and probably saved my life. We begrudged paying the premiums for years, saying what if we had put that money in the bank, but you don’t right?

 

Musicians with Cancer and Other Maladies is NOT about money or donations, or benefits, it’s about Friends reaching out for each other.

Yesterday we had the opportunity to catch up with some old friends we haven’t seen for a while, you know the kind, where the years melt away and it as if the last time you saw them was yesterday. Of course one of them also had cancer, you can’t escape it, so that made two of us.

There was classic discussion about how do you talk to people with cancer and there’s no easy answer to that. Don’t ask “How are you?” We get asked that all the time and you probably don’t want to hear the answer. Also, when we are getting treatment the doctors and nurses ask how we are doing and need to train us to share all the gory details, so you could find that asking that question leads to even more awkwardness. By all means do ask if there is anything you can do to help. I’ve had lots of kind offers, most of which I haven’t taken up, mostly because of fatigue, but the offers mean the world to me, truly.

One of our friends asked about my new Facebook group Musicians with Cancer and other Maladies and asked if it was about getting donations. The simple answer is a resounding NO. I’m not looking for money, I’m not after benefit concerts; and having trolled YouTube looking for something similar to what I’m trying to establish for other musicians, I can’t find anything. They all seem to be about donating to research or people who need help. So I understand why people might think that.

That’s great because it shows there is a need for something different. This is just about helping a friend. A lot of the videos I am posting are asking for money at the end of a heartbreaking story. There are groups who need that and we support many cancer charities and our Team, the Early Birds will be doing our 4th Relay For Life in March, but that is nothing to do with  this page.

What people need most is the encouragement of friends. For example when people shave their heads in support of cancer, what matters to the cancer sufferer isn’t the money, it’s the gesture of solidarity. When my beautiful empathetic granddaughter had her hair cut (which was her idea), it was so that it could be made into a wig for someone with cancer who had no hair.

So please, no money, I’m just looking to create an environment where people who have friends with a condition that makes it hard for them to motivate themselves get some support.

I’ve opted for musicians for a number of reasons, probably the most important is that playing music is cathartic, it generates good feelings for both the musician and the audience. But what I’ve found is that sometimes due to chronic fatigue in my case, or perhaps depression in other cases, you just can’t bring yourself to pick up your instrument, or if you pick it up, you don’t have the energy to play it.

Here’s an example of what I mean. I received this from a good friend who sends me a message every day. I also get similar messages from friends who are much worse of than I am.

I can tell you that even when I really feel too tired for anything and fatigue is a bitch, nothing like just being tired or sleepy, but I get the message and off I go to the music room and play. It helps my soul and spirit even if I don’t feel like it.

But this isn’t about me, it’s about creating a movement of people helping people. It looks like it’s going to be a hard slog to make this work but joining the Facebook Group even if you don’t know anyone with cancer right now, you will. Just knowing you have friends who care makes a big difference. If they see you post a comment or share a photo, video or story, you will make a connection.

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

This is an example of what I’m talking about. Not the advertisement at the end, just the concept of friends being there for each other.

Anyway, as usual this is turning into a book. My request for you is as a friend or associate of mine or of anyone that has cancer or depression or PTSD or whatever, join the Facebook group and tell a friend you are there for them. A lot of you are serial networkers and you can help by spreading the word through your network. You will be doing a good thing.

So send no money, just help pay it forward if you would be so kind. If music means something to you, if it has ever helped you, if your friends matter to you, this is a really small thing that could mean the world, even if just to a couple of people.

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

Thankyou so much. Feel free to leave a comment.