Heavy-Hearted

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Good evening, all!

Sorry I haven’t written for a while, but things have been a wee bit busy over the last few months.

Following on from all the medical madness of March, I was back in Wellington for a follow-up appointment in August to figure out if I was going to get an ICD as an insurance policy to guard me from the possibility of future tachycardia.

This trip doubled as our first family holiday away with ToddlerinFrame.

We visited “Six South” – the heart ward I spent almost a month in (the nurses all somehow remembered me) and ToddlerinFrame very adorably said “Thank you for looking after my Daddy” to all of them – So very, very cute!

It was a bit of an emotional trip, with us all visiting the doctors and nurses at the fertility where ToddlerinFrame was conceived. Happy tears and hugs were shared, while our daughter played in the waiting room toy corner, oblivious to the significance of her surroundings.

While there we all went to Te Papa and I toured the “Scale of Our War” exhibit. It is truly breath-taking and not just because you begin the exhibit staring down the barrel of a gun. Well, at 6’8″, I start the exhibit staring down the barrel of a gun – I guess everyone else stares UNDER the barrel…

Considering the purpose of my Wellington visit, it was fitting that you leave the exhibit feeling very heavy-hearted.

It is a stunning take on New Zealand’s World War One participation and a must-see.

Two months later I was back in Wellington having my ICD implanted just after Labour Weekend.

After spending a couple nights staying with our terrific Wellington Twitter friends Laurie and Annette and doing all the tourist things I never got to do during my first stay, I went in for day surgery and a night of observation back in Six South.

The lead-up to the procedure made me a bit nervy, but some rather wonderful sedation drugs (equivalent to a 4% Garage Project craft Beer on a hot day without any lunch) took the edge off of things (but not all the pain) and I experienced my second defibrillation when they tested the ICD – They put you under for the test, but that whack certainly wakes you up, albeit briefly.

The procedure is quick and you are up and about soon afterwards, so I spent my evening saying hello again and catching up with all my nurses.

It was good to see them all again, even if their parting words were usually “Hope we never have to see you again! (in the nicest possible way)” kind of reminded me of my teenage years…

It’s now a couple months since the procedure and aside from having to delay my cricket season start until after Christmas to ensure things healed completely and the occasional tweak of the surgery scar, I forget the ICD is there most of the time (except when ToddlerinFrame inadvertently whacks it).

Everything going well, the ICD will never go off and I’ll only know about it when I need to get the batteries changed every ten years or so.

Considering everything I’ve gone through heart-wise this year, this was a mere drop in the ocean.

The beat goes on! :)

Fishy Goings on at the Skate Bowl

Skating Fish

Something smells fishy about the way “Sk8 Zone” / The Napier Skating Club has been treated over recent months – and it’s not just the aquatic entrails of Marineland’s gutted carcass.

A couple of weeks ago, just as the school holidays were about to get underway, Napier City Council announced the “pop-up” site they had found and leased to temporarily house the club was now not “looking viable” due to structural concerns about the site.

It was the latest sprinkle of salt in a wound that had most recently flared when the council rather unceremoniously evicted the club and demolished their 61 year old premises – despite saying in August last year that SK8 Zone would remain open until the new park opened.

In Hawke’s Bay Today on July 19 NCC’s community strategies manager Natasha Carswell said “the council had spent considerable time searching for an appropriate venue and was pleased to have negotiated the (Salvation Army site) deal”.

Add to that another month’s worth of reconstruction and expense by Skating Club members and you have at least 8 weeks for Napier City Council to check and sort building reports, earthquake ratings, codes of compliance and change of usage for the temporary site they found for the Skating Club.

Yet the site was only discovered to be “unsafe” the weekend it was due to open?.

That doesn’t sound right.

Incidentally, what civic authority administers and controls such oversight of buildings in Napier? Oh, yes – Napier City Council!

In fact the Community Services and Compliance / Planning departments are a few minutes’ walk apart or mere speed dial away!

Council Community Services / Strategy departments expressed platitudes that this development was “really disheartening for both the team at council and the skate club.”

But the NCC Marineland skate park is not a redevelopment of “Sk8 Zone”, rather a replacement.

Whilst NCC CEO Wayne Jack had previously claimed that “We definitely need their input to make it a world-class facility… The club is instrumental to [the facility’s] success”, the council have previously stated they wanted to run the new facility because they felt Napier Skating Club does not have the “operational expertise” despite 61 years of operation.

You will, of course, remember how successful NCC’s recent “operational expertise” in MTG construction and Art Deco Bus operation proved.

You could easily be forgiven for thinking there appears to be a strategy going on here, but it’s not in the community’s best interests.

At best this is an error that would likely see any other organisation liable for what this is costing the skating club.

At worst it could look like an attempt by the council to break a long running, local, mainly voluntary community organisation that it sees as competition to its plans.

Napier deserves better!

Vox Populi?

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We so seldom publicly hear from our councillors here in Napier, you can easily forget they exist, other than in the run up to elections.

Edicts are typically issued by the Mayor and / or CEO.

A couple years ago a Massey University study appeared to indicate Napier’s elected councillors were effectively gagged by the council’s Code of Conduct.

This “Elected Members Code of Conduct” (or “EMCC”) does indeed appear to strip our elected members of many rights including the ability to publically criticise other councillors or members of council staff and limits who can say what to the likes of the media – thus the “We’re all one big, happy family” visage of the last few years that receives wide scepticism.

Or, more horrifyingly, imagine if they all did in fact willingly agree with and vote to support the Deco Bus and MTG fiascos!

The latest “gagging” incarnation of Napier’s EMCC appears to have been around since 2004, but this EMCC is “reviewed and confirmed at each triennium by local councils” – you would expect this to coincide with the three-yearly local body election process.

So wouldn’t you think at least some councillors would have queried or tried to change or abolish this over the last 12 years / four elections?

This current council term coming to an end saw the biggest number of councillor changes for over a decade and the biggest chance of such changes yet but, alas, no change.

Question One: So why hasn’t the “gagging” EMCC been changed or challenged since 2004?

Just yesterday I also came across something that would appear to severely limit councillors’ abilities:

While reading the 2016 Napier City Council Candidate Handbook, I came across the declaration Napier’s councillors have to take before taking office “Inaugural Meeting”, Page 9 FYI).

I found the wording that councillors will “Perform in the best interests of Napier City Council” very odd.

Not for the public of Napier, or even ratepayers, but Napier City Council – the local authority!

Very odd indeed.

I investigated further, asking a Twitter friend who is an absolute gun on matters of legislation and they pointed me towards section 14 of Schedule Seven in the Local Government Act of 2002, which had the boiler plate for such declarations.

Napier’s declaration does indeed appear different.

Whilst the Local Government Act’s declaration states councillors will “Perform in the best interests of (City/District) VIA their (Local Authority)”, Napier’s rather clearly seems to imply councillors’ main loyalty is to, well, the council!

“Autorität über alle”

LGA

Just who is in control here?!

Along with the “unanimously supported” Deco Bus and MTG horror stories, NCC now looks intent on building a velodrome, with their avid cyclist CEO leading the peloton.

I didn’t vote for the CEO. No member of the public can.

From recent news coverage the majority of Napier ratepayers don’t want a velodrome, they would prefer more / bigger public swimming pools, as the city of over 60,000 currently has only one.

Here we have a problem.

If it is in fact unelected staff, rather than councillors, leading the charge or in control of major council ventures and they go pear-shaped at the ratepayers’ expense, such as the aforementioned bus and museum travesties (which no member of the public voted for either), recent concerns with NCC’s Animal Control Department, or the on-going Sk8 Zone debacle we can’t vote out the council’s CEO or staff when they are involved in such high-jinks.

But we can (but for some unknown, highly irrational reasons didn’t) vote out the councillors who (apparently) supported it.

This all sounds very much like one of the many downsides of privatising council / state owned assets.

So:

Question Two: Who of the incumbent and potential Napier City councillors will truly stand up for those who support and elected them this election and finally challenge and change this “gagging” EMCC and the misguided allegiance of the Councillor Declaration?

You are the voice of the city’s people!

Napier City Council is supposed to represent and support the people of Napier City, not just senior council management and staff – let’s see that!

Change the EMCC!

Vox Populi!

Napier voters deserve better!

I Want to Believe

Andrew's self-confidence, last seen heading into the gaping vacuum of space...

Andrew’s self-confidence, last seen heading into the gaping vacuum of space…

“If just one person believes in you,
Deep enough, and strong enough, believes in you…
Hard enough, and long enough,
It stands to reason, that someone else will think
“If he can do it, I can do it.”

And when all those people,
Believe in you,
Deep enough, and strong enough,
Believe in you…
Hard enough, and long enough

It stands to reason that you yourself will
Start to see what everybody sees in
You…

And maybe even you,
Can believe in you… Too!”

The Muppets – “Just One Person”

Self-esteem has a major, critical failing (ok, maybe several).

Whilst, as the name suggests, it is focused on esteem or confidence in one’s self, it really helps if there are others there to encourage confidence in that self as well.

So it kind of figures that self-esteem has been as hard for me to come by as real-life recognition or praise recently.

I’m trying to remember the last time someone complimented me in person – said “well done!” “good job!” “You’re hired – here’s $100,000!”(ok, I’m pushing the limits of reality there..) and nothing comes to mind.

Twenty years ago I finished working in radio (for the record, I started working in radio on New Year’s Eve 1995).

While I’m confident I could still wipe the floor content-wise with what qualifies as “on-air talent” today, you will likely never hear my beautiful bassy voice on the radio ever again – and not just because I’m inclined to swear lots more than I used to.

I tell people my dream radio career lasted only six months because I had too high an IQ and too low an ego (the other reasons were rubbish pay and trying to stay awake for 24 hours each Saturday).

I just couldn’t fake the level of self-belief required for radio.

And this was ‘90s-radio-level bravado I’m talking here – absolutely nowhere near the stratospherically narcissistic / Ninth Circle of Dante’s Inferno that it has become today.

But, while my radio career was muted, my voice was not silenced.

From an early age I learned the power words can wield.

So I started writing.

I’ve written stories, poems, radio ads, press releases, pieces for work newsletters, letters to the editor, Man About Town columns for “BayBuzz”, opinion pieces in Stuff and even a couple articles in the local paper many years ago about growing up in Napier in the 1980’s and my love for my home town.

My Dad was always my biggest supporter.

He believed in me.

He kept newspaper clippings of every letter or item I had in the paper and even some of the more colourful reactions!

Three years ago I started writing Napier in Frame.

It’s not a profession – I make no money from my writing.

I have a full time job and a young family to support which is my priority, so I can only write when I have the time or inclination.

I still wrote the occasional letter to the editor, when something utterly atrocious stood out – Art Deco buses and the miss-management behind MTG’s construction were stand-outs.

But I steadily shifted towards writing on this site and promoting it via my Twitter and Facebook profiles.

People who know me even say “I haven’t seen your letters in the paper recently” when I see them in the street. I tell them about this site, but they seldom seem interested or even aware of a world wide web beyond traditional print media.

Two years ago my Dad died suddenly.

I kept writing – it helped me cope and process things, but it kind of felt like any support, luck, or belief anyone had in me died too.

I’ve written, what I at least think, is some of my best work since then – The coverage of my recent stay in hospital received plaudits, but these are predominantly from friends online.

This is where things get a bit confuddling.

FM

Positive reactions are always good to receive, but self-doubt (self-esteem’s arch-nemesis) can begin to creep in.

Someone (usually a friend) gives you a compliment on Facebook or Twitter and you automatically discount it – “Of COURSE they’d say that, they’re your FRIEND!” Or “It’s ONLY social media – it’s not ‘REAL’” – sabotaging yourself and your abilities.

Even when you point out something that you think is blatantly wrong – Like hypocrisy over the Ruataniwha Dam, or the local newspaper covering Hastings District Council bailing out Horse of the Year, when the event’s board said in the same paper just weeks before they themselves would cover the loss and nothing is done.

The “bad guys” win.

Worse still can be spending years developing and making your case for a way to improve the city you love and the region you were born and raised in.

That idea gets local and national coverage.

Heck, even John Campbell likes it!

JC

But when you approach people you believe have the resources, funds and it’s in their best interests to actually enact your idea and the response is nothing – silence.

In this gaping vacuum of space no one can hear you scream in frustration.

I’ve had similar responses trying to rejig New Zealand’s flailing mainstream media – But the general consensus there is

“What would he know? He’s only from Hawke’s Bay!”

If I’m wrong that’s not a problem. You can learn from mistakes and correct them.

But no one has told me I’m wrong.

People tell me they “admire my passion” and am constantly queried on how I would achieve the goals I seek.

I tell them, but they don’t offer to help and “passion” won’t pay the bills, or finance what I have planned.

What if I’m right and no one cares to help try and make a difference, to help effect change or fix the problems I’m trying to remedy?

Ignoring problems doesn’t solve them or make them go away.

But ignoring people who are trying to fix problems makes the people go away – lose hope, lose self-esteem and confidence.

Imposter

I’ve become quite philosophical and theological about it:

“If Andrew makes a factual statement and no-one notices or cares, is he still right?”

“Before THE WORD, or there was light, or even the Big Bang, Andrew was wrong”

When the negativity or gaping vacuum of ignorance gets to you and makes you glum, sad, or grumpy and strips away your self-belief, you’re STILL wrong – Because being glum, sad, or grumpy isn’t allowed – You’ve apparently got to be happy, positive and smiling All. The. Time?!

This isn’t one of those inspirational stories of the little struggler, the battler, who overcomes adversity to triumph.

It is the tale of someone who has been told they’re wrong when they’re not, who has been ignored and unappreciated long enough for it to essentially become a default setting – a shitty-mood Stockholm Syndrome.

@Oatmeal Nails it once again :/

@Oatmeal Nails it once again :/

Having to spend a few weeks in hospital pales in comparison.

Shakespeare said we only have an hour upon life’s stage to strut and fret before we are heard no more.

I want to make a difference in that hour, but I can’t do it alone.

I need support, I need people to believe in me.

I need to believe in myself.

I want to believe.

Mourning Mediaworks’ Muppet Muting

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“Sometimes you’re crazy
And you wonder why
I’m such a baby, yeah
‘Cause The Muppets make me cry”

Paraphrasing “Only Want to Be With You” – Hootie and the Blowfish

Someone told me a while ago that I “suffer from nostalgia”.

I thought it was an odd expression, as rather than “suffering” from nostalgia, I find it far more “comforting”.


“Nostalgia is learned formation of a Greek compound, consisting of νόστος (nóstos), meaning “homecoming”, a Homeric word, and ἄλγος (álgos), meaning “pain, ache””

I did, however, feel a great deal of pain when I learned that one of the best television shows of all time, Sesame Street, will be leaving NZ free-to-air television screens from the end of June when Mediaworks’ “Four” channel is rebranded “Bravo” and degenerates into wall to wall “hyper-reality” television.

Some shows have already been given new timeslots on Four’s network sister channel “3”, but notably absent was Sesame Street.

Perhaps the network is still a bit grouchy that an almost 50 year old children’s show out-rated their much-vaunted “current affairs” breakfast venture

This coming November, Sesame Street will have been a friend and teacher to billions of children across the globe for 47 years – that’s one hell of a feat in the fickle world of television!

Launched in 1969 by Joan Ganz Cooney and Lloyd Morrisett one of the things that made so many people love Sesame Street has been its cast centrally featuring Jim Henson’s Muppets, puppets and Monsters.

Often zany and silly but never condescending to its young audience, Sesame Street has become the inspiration and benchmark by which many people judge not only children’s television, but all television since.

While teaching pre-school basics like the alphabet, counting, colours and opposites, it also deals with making friends, manners, feelings and other important social and personal issues.

One particular Sesame Street piece has burned itself into my memory (have a box of tissues handy):

When Will Lee, who played shopkeeper “Mr Hooper” (“Hooper’s Store” still bears his name as a memorial) died in 1982, rather than recasting the role, or saying Hooper moved away or retired, Sesame Street’s producers decided to deal with the issue head-on and created an episode that taught their young audience about the difficult topic of death in an honest and straightforward way.

I would have been five when the episode originally aired and some of my earliest memories are of going to the funerals of elderly grandparents and relatives, while not fully understanding what was going on.

That episode made things much clearer and easier to understand.

I cried watching it.

I still cry watching it today.

I wasn’t the only one – Legend has it the piece was shot in one take and there wasn’t a dry eye in the entire studio, in front of or behind the cameras, once it was done.

Jim Henson’s work and his creations blossomed from Sesame Street, as did the world’s love for them.

When he died in 1990, leaving behind a legacy of Muppets, movies, Fraggles, Sesame Street and many other beloved shows all his creations got together for one last show called “The Muppets Celebrate Jim Henson”.

Whilst the special centred around Henson’s other most well-known creation – “The Muppet Show” for the finale – a song called “Just One Person” almost all his creations appeared to sing a gorgeous eulogy to the great man, the amazing talent from where they came.

I cried watching that too, because being an only child, television had been one of my biggest inspirations and windows on the world before I started school.

The Muppets, Fraggles and Sesame Street characters had become more than just puppets to me – they were my friends.

I saw what Henson could do on multiple levels – Not just cute, fluffy, talking toys, but almost sentient beings with a drive behind them – to teach, to care, to love.

I believed in them.

And I believed the words to that song – That “Just One Person” can make a difference.

There will, of course, still be access to Sesame Street videos and episodes online from July, but internet access can be an expensive, unaffordable luxury for many.

This availability of Sesame Street on free to air television has had wide reaching benefits with studies showing it has just as many developmental and educational benefits for children as going to pre-school which some cannot afford, or be geographically able to attend.

So, when Toddler in Frame and I watch Sesame Street for the last time on TV Four this weekend, she may wonder why Daddy is crying.

It’s because I’ll be pitying the next generation that isn’t getting to see it the way so many grew up with.

The genius, the love, the knowledge and empathy they will miss out on – replaced by cheap, commercialised, fake rubbish.

Future generations deserve far better.

Dis-Carded

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When I saw it crumpled up on the floor of that hall, maybe I should have just given up there and then – Saved myself 20 years of work, stress, time and pointless hope.

Because it was right – A portent of things to come.

No matter how hard I tried or what I did, it wouldn’t be enough. I wouldn’t be good enough to achieve the goal – the DREAM it symbolised.

It was 1997 and I was volunteering for the Hawke’s Bay Cancer Society as a “Youth Health Promoter” – particularly aimed at Smokefree initiatives – the “cause célèbre à la mode”.

I had been doing it for a couple of years, having decided I didn’t want to go to university upon finishing high school, I instead worked at a local radio station for six months and when I saw the Cancer Society’s “proper” health promotion lady in a community newspaper promoting some event, I thought I’d like to help out.

So I did.

I’ve always had great promotional / “sales” skills (though I much preferred “selling” ideas rather than the unrealistic, ever-increasing “sales goals” variety) and, like radio, I got a kick out of the performance aspect of promoting stuff – being unconventional, finding different, memorable ways of doing things.

We gave presentations in schools, held a camp for high school leaders to help spread the Smokefree message, went to Wellington to film a segment for a youth TV show called “Get Real” (that never made it to air because the “tape got lost”) and held Smokefree Speech Contests.

clippings

I had even been selected to be a (expenses paid) New Zealand representative at an Australasian youth health conference in Sydney (my first overseas experience) – So I must have been doing something right.

I was having a great time. I enjoyed the work (although I also had to work part time in a supermarket for income). I did interesting things and got to meet great people.

I was meeting so many people I wanted to learn from and keep in touch with that I made up my own “business cards”.

Inkjet printed on green cardboard, they weren’t the pinnacle of professional imagery, but I was merely a volunteer and it was all I could afford.

That is when it happened.

I had only just made them the week before one of the speech contests and handed two out at the event. I can’t remember who I handed them to, but I remember seeing one in someone’s diary – used as a bookmark as they left.

Then I saw the other one.

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It was scrunched up, lying on the floor close to where I had given it to whoever it was.

The purpose of the card dead before it hit the ground.

I felt a bit crap and hurt about it at the time – That what I was doing had been discarded so thoughtlessly, but I moved on.

The compulsion behind throwing the card away didn’t.

It persisted – An origami albatross around my neck.

I had been doing this work voluntarily for two years and loved it so much I wanted to make it my career – to make a living out of it.

I asked those involved professionally what I should do and was told I had to get a tertiary qualification in marketing or something similar.

So, combining my volunteer work and an actual paying job, I added a one year, full time “Diploma in Marketing” course from Napier’s own Eastern Institute of Technology to my work schedule.

I passed, acing the communication aspects of the course and graduated with an A4 certificate, a few thousand dollars’ worth of student debt and, as it turned out, nothing more.

I applied for well over 50 marketing-type jobs in the years immediately after my graduation and equally got well over 50 rejections.

Many years later I was asked to do a short video for Baybuzz on what I thought Hawke’s Bay needed – in a take that ended up on the cutting room floor I symbolically crunched up and threw away a copy of my marketing diploma – that was what it is worth to me.

I still volunteered for the Cancer Society. They were great and very supportive, but being a charitable organisation they couldn’t afford to pay me.

In 1997 I had been to the (“Smokefree” it was at the time) “Stage Challenge” at the Hastings Municipal Theatre.

I fell in love with it.

High school students perform a piece of theatre on a (usually social or historical) topic of their choice to music over eight minutes.

It was loud, energetic, colourful and amazing – If you haven’t seen a performance before, it’s basically a Baz Luhrmann musical movie amped up to 11 by teenaged hormones, pheromones and whatever the loudest, most energetic music of the day is.

So in 1998 I made direct contact with the company who ran it at the time from rural Victoria Australia and offered to help and went around Hawke’s Bay high schools getting as many as I could involved in the event.

The previous year two HB schools had taken part; I managed to up that number to five, with another two schools I had approached joining in the following year.

Our local DHB’s Health Promotion Unit was the “official” local supporter of Stage Challenge in Hawke’s Bay. So I approached them to see if we could team up promoting the event – going around schools, getting stuff in the paper and on the radio.

In the end it was just me that ended up doing those things – The DHB set up a table with some health-related pamphlets at the theatre on the day of the show. That was pretty much their entire involvement.

The 1998 Hawke’s Bay Stage Challenge was a high energy, feel-good success and enjoyed by almost all involved.

I say “almost” because I was the exception.

I loved the performances, the energy, the music and the passion the teams put into and got out of their performances. The school teams thanked me for my help and input.

Having spent several months going around the region, promoting the event and almost TRIPLING the number of local schools competing I had to ask the show’s producers for any form of thanks. Even then it wasn’t forthcoming

For their table of pamphlets, the DHB got a framed gold disc as a sign of appreciation.

I got nothing.

It was the beginning of the end for me.

With the promotional and entrant numbers success (but appreciation fail) of Stage Challenge added to over two years of voluntary work experience, promotion, publicity and interaction, as well as my “tertiary marketing qualification” I applied to numerous local and national health promotion and similar, youth-orientated, agencies to try and get a foothold in paid employment at something I enjoyed doing and had been recognised (by a few at least) as being very good at.

The response: Nothing.

I gave up.

It wasn’t easy – When you dedicate all your free time over several years to something you believe in, enjoy and are good at, only to be shot down at every opportunity for advancement or even thanks it gets very physically and emotionally draining very quickly.

I packed up all my Smokefree things, returned them and walked away.

I went back to working for money, rather than enjoyment. It was all rather capitalistic and soulless.

I eventually found a job I loved in a bookshop. In that job I met someone I would go on to love and be loved by and end up marrying.

After some struggles the two of us would have a baby girl who we both love VERY much.

Love inspires – It encourages hope, it rekindles dreams, it makes you want to be a better person.

I started writing and promoting / “selling” ideas again – so I could be a better inspiration for my daughter, like my dad was for me.

But the shadows of an origami albatross started circling again….

The Beat Goes On

“So the soap opera is told and unfolds
I suppose it’s old partner, but the beat goes on
Da-da dum, da-dum da-da, da-da”

“Lose Yourself” Eminem

Over the past month I learned that sitting around hospital wards doing very little could be extremely tiring.

It took me less than 24 hours to remind me that sitting around home with a toddler for only a few days is absolutely exhausting!

It was fantastic to be back home, but my wife, Toddler in Frame and I were all passed out on the couch mid-afternoon the day after my return.

Having been sedentary and on a short leash for so long my fitness levels were a bit of a write-off, so I made a point of going for walks each day – usually down the road to the shops for groceries and even into town when I was feeling energetic / masochistic.

On one of my first flânerie I met a friend who lives nearby. Her first words upon seeing me were “AARRGGHH, the walking dead!!”

Thanks, Sarah, it was good to be back.

I was sitting the couch with Toddler in Frame watching the recycling men pick up our bins the Friday after my discharge when my phone rang. It was Dr Andrew Aitken – one of the Wellington cardiologists – They had just got the results of my biopsy back and he thought I should be the first to know the details.

The thing attached to my heart is a Cardiac Fibroma and it is pretty big.

It measures around 6cm x 4cm x 4cm.

Your heart is roughly the same size as your fist – Which makes my heart about 10cm x 9cm x 8cm, – which made the fibroma around half the size of my heart!

As it is presumably made of heart muscle tissue does that mean I essentially have a heart and a half?

Holy crap – I’m Doctor Who!!!

Fortunately (especially given its size) it is benign.

It didn’t just suddenly appear overnight at that size either, so had presumably been slowly, quietly growing there for some time.

So what will they do about it?

Aside from monitor it – Nothing.

• While attached to the heart, it isn’t impeding blood-flow or regular operation of the big cardiac muscle or anything nearby.

• Surgically removing the fibroma would only cause the body undue stress and given it’s partially in my left ventricle; this would also mean a decent sized hole in my heart that would need patching up pretty darn quickly and securely.

• While the tachycardia that put me in hospital and set this whole chain of events off had not made a return in over a month, I still might need an ICD, just in case.

There is a good chance the fibroma is part of a bigger picture too.

When combined with my history of Basal Cell Carcinomas, it looks like I may have something called “Gorlin-Goltz Syndrome” – an inherited medical condition that makes you more prone than usual to BCC’s and random cysts (sounds familiar…).

Interestingly, in Australia the incidence of Gorlin Syndrome (or “NBCCS” as it is also known) is around one in 500,000-150,000 and only 10% of those develop cardiac fibroma, which means:

I’M ONE IN A MILLION!!!

And Dad always used to say I was “won in a raffle” – Ha!

I had an appointment with geneticists several weeks later to investigate things further. They took blood samples and we will find out in a few months what the story is, or if this is something I might have passed onto Toddler in Frame (although she shows none of the early signs).

So where does this leave us?

Other than a fast heartbeat, an electric shock, several weeks of upheaval and a biopsy scar that makes it look like I’ve had a boob job ( my daughter calls it “Smiley Face” :) ) I am exactly the same as I was before all this started. So is the fibroma

I feel like I have kind of let you – my friends, family and readers – down a bit.

There is no big finale, no “Blaze of Glory” to go down in. No lifesaving transplant surgery, or radiation-induced superpowers to heroically finish this lengthy series of posts with.

Life “has returned to normal”.

There are subtle changes, though.

I sub/self-consciously notice my own heartbeat more.

I notice and enjoy the normality of, well, “normality” more.

Having been stuck inside for so long even little outdoorsy things like a warm breeze or rain on your face become wonderful, natural interactions.

I appreciate what awesome family and friends I have more – Even those I had (and some I still have) never met in person were so wonderfully supportive and helpful (and sent me chocolate too!).

I appreciate the work of our dedicated, caring medical staff.

And while I still “sweat the small stuff” occasionally, having faced such major uncertainty for such a length of time has certainly “levelled out” my life-view and doesn’t make major things seem so major.

And ultimately I am still here.

I can share my experiences with others, I can hear others’ experiences.

I can give my wife a kiss and my daughter a cuddle – Toddler in Frame has just started saying say “I Love you Daddy/Mummy” – I can’t get enough of that!

So I can’t complain –

There are people out there worse off than I am.

CODA

I really can’t say thank you enough to those who supported me physically, nutritionally, emotionally, intellectually, literally and even just with their company.

A special thank you goes to the staff of Hawke’s Bay Hospital’s Emergency Department who zapped me back to normality and the Coronary Care Unit who helped me see through those first days of dark uncertainty.

My biggest thanks goes to the staff of Wellington Heart and Lung Unit who had to pay the biggest price of putting up with me the longest and ultimately figuring out what was wrong with me (I know I’ve missed a few names – Sorry!):

Nurses: Wanda, Juliet, Rosanna, Sylvana, Mitch, Krystle, Whitney, Susan, Louisa, Neena, Kerri, Lorraine, Lisa, Nicola, Darly, Janette, Lyn, Mariska, Siobahn, Lou, Gemma, Tony, Alistair, Fiona, Zoe, Gina, Shan, Gemma, Anu, Anjalay, Wendy, Rosie, Leanne, Renaye & Stephy.

Student Nurses: Rachel, Emily and Samil.

Healthcare Assistants: Nemi, Mel & Ropeta

Food & tea/coffee ladies Deb, Bunny & Beth.

Administrator: Ilona

Physio: Daniel

House Surgeons / Registrars: Doug, Deanna, Alice, Natasha, Cassandra, Jessica & Davida

Cardiologists: Drs Webber, Wilkins & Aitken

Cardiothoracic Surgeon: Mr McGivern

These people help complete strangers survive life-threatening issues every single day and deserve all the help they can get.

If you would like to make a donation to help them buy more equipment, further their studies, support more patients and save more lives, you can make an online donation HERE

Rest, Recovery and Ryan Reynolds

Bed

I’m cruising through Newtown and over the hill to Kilbirnie. Before I know it I’m launched into the air over Lyall Bay.
The rocks that surround Moa Point, jagged and sharpened by centuries of Cook Strait swells look like the teeth of an ancient, sleeping Taniwha.
I’m sure I see an eye wink amongst the windswept grass – the beast is threatening to rip me to shreds.
I climb higher and slowly turn. I see an unfamiliar, narrow inlet and wonder what it is, before realising it’s the inlet to Port Nicholson – Wellington Harbour.
Despite the channel’s width the choppy waves breaking on Barret Reef make it hard to believe two ships could pass each other through there without both vessels and crews holding their breath.
I soar on. Past Pencarrow Head and around Cape Palliser, heading north.
I’m going home!
I climb higher and before I know it am above the clouds. White, fluffy merengue below, bright blue and radiant sun above.
Is this what heaven looks like?
Should I be disappointed that it all seems a bit clichéd?

Anyway, where was I?

Oh, yes:

“The chief anaesthesiologist says “Right, Andrew, we’re going to start sending you off to sleep now, just relax and breathe.” I relax, breathe, blink and..”

I’m in “PACU” (Post Anaesthetic Care Unit) as it’s called in Wellington Hospital.

A couple hours have evaporated in the blink of an eye.

I don’t know what they’ve done to general anaesthetic these days, but it’s become a narcotic ninja!

I remember operations years ago, where you were aware you were going under – You’d feel woozy or your hearing would go all funny and then “zonk” – Not any more.

It takes a bit to regain full lucidity, but out the corner of my eye I see one of the head anaesthesiologists who visited me the yesterday before the operation, at least I think I see him – Things are still a bit ethereal and I imagine guardian spirits have learned to wear clothing to suit their surrounds by now.

His presence reminds me of something one of the doctors said and I touch my chest to make sure they haven’t had to crack me fully open – I can’t feel any bandages so breathe a little sigh of relief.

Instead I have a ten centimetre, curved scar just under my left breast, with a chest drain tube inserted into a hole just below that.

(Once the bandages are off it looks like I’ve had a boob-job and then been shot.)

He says the biopsy was a success – In fact, instead of getting three samples, they were able to get four!

I give a tired, even more relieved smile.

We’ll soon know just what this thing is.

I’m kept in PACU for around two hours – Which would feel like a long time if not for the drugs, comfy bed and numerous cups of tea and sandwiches.

I tell the nurses it appears the Wellington real estate market has followed Auckland’s maniacal lead and the bed space I left in the Heart Unit that morning has been bought and sold three times while I have been in theatre and recovery – hence the delay.

Sadly I get no share of the profits, but it provides entertainment.

Throughout my stay I’m reminded of the “Deadpool” movie trailer I’ve seen numerous times (it’s all I’ll get to see until its DVD release as the movie’s run in theatres coincides almost perfectly with my enforced hospital stay) where one of the baddies say “The one thing that never survives this place is a sense of humour” and our eponymous protagonist played by someone as equally chiselled, charming and um… Commonwealthean(?) as yours truly, Ryan Reynolds (he’s a year older than me, but I’m six inches taller than him), replies “We’ll see about that”.

Stay positive, make jokes.

There’s someone out there worse off than you.

I have a couple of the bigger IV lines removed which I am grateful for as they looked big, uncomfortable and, well, “icky” and am eventually wheeled back to the Heart Unit, but put in “Step Down” which is an open-plan room where the nurses can closely monitor six beds at once rather than a more widely spread “pod” of individual rooms.

Having had nothing other than tea and sandwiches since the night before, lunch and dinner are well received and quickly vaporised.

As I eat, though, I keep bending my right arm, which in turn makes an IV line in my arm move and sets off the alarm on the line’s pump. After an hour of sporadic beeping (and accompanied quiet cussing from me) one of the nurses jury rigs the line to my arm with a cotton swab and some sticky tape.

The pain-relieving epidural they put in before the operation has numbed me from roughly armpit to thigh level, so I’m confined to bed for the rest of the day and night.

This numbing poses some extra challenges:

As this this large area under anaesthetic includes my heart, it means the heart doesn’t pump as much as it usually does. So to make up for this they hook me up to a saline drip and basically substitute blood pressure with water pressure – Around ten litres of fluid goes into (and out of) me in roughly 24 hours to try and make up for the depleted pumping.

But this, the nurses tell me, can have a side effect –If your body has too much fluid going through it, it can have the same result as getting too little fluid (dehydration) and cause an electrolyte imbalance and can send your heart into dysrhythmia and TACHYCARDIA!

You must be freaking kidding me!

After all the hoopla of hospital and tests and weeks of waiting – the tachycardia, to my thinking at least, WAS CAUSED BY DEHYDRATION?!

This means the discovery of the growth on my heart was basically just happenstance?

Oh, come on!

I suffer through a night of broken sleep due to the nurses constantly monitoring (and worrying about) my low blood pressure. This is compounded by a lamp on the nurses’ station deciding to join in on my irritable insomnia by somehow positioning itself to shine right at my bed. It isn’t until early morning that one of the nurses moves a curtain and curtails its caustic candle power.

Breakfast the next morning is accompanied by a physiotherapist named Daniel who gets me to get up out of bed and take my first cautious steps in 24 hours.

The movement, breakfast and change from horizontal to vertical planes is just what my blood pressure needs and it miraculously returns to normal straight away (or maybe it was just bored).

That morning my wife also arrives for her second visit of my Wellington stay. This time her trip is funded by wonderful friends of ours (thanks Kim and Reza!)

The next three days are devoted to rest and recovery.

I have my last two major lines (the epidural and a catheter that has been looking after, um, “water flow” removed a day or so after the operation and the freedom it provides (despite having only been in place for a few days) is remarkable.

Mrs Frame goes on supply gathering missions (she is even stricter about me leaving the ward, let alone hospital grounds than the medical staff!) and more Wellington Twitter friends come to visit us (thanks Jim, Morgan and Mike).

As I’ve said, the Wellington nurses are great – and just to prove it, on the day I go home all the ones I have had contact with over my stay come to say goodbye and give me a hug – Four of them line up to do so as I’m leaving, much to the chagrin of my wife and the orderly who is supposed to escort me down to the transport centre.

Before I know it (and, as it turns out, several hours before my wife’s return flight home is due to leave) I find myself cruising through Newtown and over the hill to Kilbirnie in yet another Wellington Free Ambulance with another patient and her daughter, before launching into the air over Lyall Bay (see what I did there?) and flying home in the Hawke’s Bay Air Ambulance.

It will be a week before I find out the results of my biopsy, so what better place to recover and wait than at home?

Operation

BizWire

One thing I have been unable to evade throughout my Adventures in Tachycardia is my heartbeat.

That sounds odd, but it’s a mixed blessing.

You can hear and feel it, so you know you’re still alive (which is a good thing, obviously), but it’s also a constant reminder that there, right next to the thing making that “thump-thump, thump-thump!” sound is something that shouldn’t be there – And not even the highly trained medical professionals looking after you appear to have the first clue what that thing is.

Before they let me go home for Easter I was told the hospital would be in touch on “Easter Tuesday” to let me know my travel, admission and surgery details, as I was scheduled to come back down to Wellington on Wednesday for surgery on Thursday.

When I hadn’t heard from anyone by 2pm on Tuesday I called the hospital and was told I had to make my own way down to Wellington on Wednesday – the next day – when I can’t drive and all the busses were booked out.

A frantic hour and a few phone calls secured an Air New Zealand flight down to Wellington the next morning and I made it to the hospital with time to spare, but the $333 one-way price-tag not only gored our bank account, but it galled me personally and reinforced my previously held opinion that we here in Hawke’s Bay are getting absolutely screwed over on airfares.

On readmission I am sent down for a chest X-ray and yet another blood test.

I’ve lost count of the number of blood tests, lines and needles that have been poked into me in the time I’ve been in hospital, but I’m pretty sure there’s a voodoo doll out there somewhere in a great deal of pain screaming “WHAT THE HELL DID I DO?!”

The surgeon who will be performing my biopsy (they have decided to go between my fifth and sixth ribs and take needle biopsies – kind of a medical core sample) visits and runs through how things will go.

He’s part reassuring – It all sounds very clinical and reasonably straight forward..

Part concerning – “As we don’t actually know what this thing is or how solid it is, we may not be able to take a biopsy..”

And part straight out scary – “If things go wrong, we will have the bypass machine there ready to hook you up to…”

He is followed by the anaesthetic team who let me know just what sorts of drugs I will be given for the operation and how many lines and tubes I will be hooked up to for the procedure.

As an aside they brightly inform me just how easy it is to deflate a human lung to provide easier access to the heart – charming!

The day wears on and I eventually make my way to bed, staring down the barrel of the impending unknown early the next morning, with the ever-present “Thump-thump, thump-thump!” quietly chugging away and its silent buddy right next to it.
.

My room is at the southern end of the hospital, right above the hospital’s Emergency Department and a short distance from Wellington Free Ambulance’s headquarters, so every once and a while the “thump-thump, thump-thump!” is interrupted by ambulance sirens as they leave or arrive. It reminds me of the line from Don Henley’s glorious “New York Minute”:

“Lying here in the darkness
I hear the sirens wail.
Somebody’s going to emergency,
Somebody’s going to jail.”

There is someone out there worse off than I am.

I wake early the next morning, go through pre-op cleaning rituals and before most of my fellow patients are even awake, I’m being wheeled down to theatre.

I’m beginning to get scared.

They wheel me into the theatre itself and I shuffle over onto the operating table where the poking and prodding of intravenous lines begins – some of these lines are quite big and local anaesthetic is used to numb the areas, but a lot of pushing and shoving is still evident.

I’m given a few drugs to take the edge off things and they get me to sit up so an epidural line can be inserted into my spine. There isn’t as much pain or discomfort as they tell me to expect, but the twinges as the line hits a nerve or two certainly makes for an interesting experience.

While I am having the epidural inserted a very nice, large, bearded English anaesthesiologist has his arm around my shoulder talking me through it.

It is very comforting and it feels like he is giving me a hug, but he is no doubt just making sure I don’t fall face-first off the operating table and onto the floor.

He tells me guys much bigger and tougher than I am have fainted during this stage.

I don’t faint.

They lay me down and start to ramp up preparations.

I’m getting a bit more scared.

I’m scared that I might not survive this.

I’m scared that this growth thing might pop, or start leaking and leave a large hole in my heart, requiring massive surgery.

Strangely I’m not scared about potentially leaving my wife and daughter behind, because I know they are both wonderful, smart and capable.

My work provides a level of life insurance, so I know they will be financially looked after for a while at least.

But I am scared that I will miss out watching my daughter grow up. It’s cheesy as hell, but when it comes to that: “I Don’t Want to Miss a Thing”.

I’ve been told that no matter how big or tough you are everyone cries when they are going in for heart surgery.

And it’s true – I shed a tear.

The chief anaesthesiologist says “Right, Andrew, we’re going to start sending you off to sleep now, just relax and breathe.”

I relax, breathe, blink and..

I’m Radioactive, Radioactive!

tyj

Apparently I snore.

It’s the day of my PET scan and I’ve been chauffeured (via ambulance) to a private hospital (la-de-dah!) in the hills of Wellington.

I get undressed and into the standard sort of hospital gown you wear for all sorts of procedures, lie down on a bed in one of the ante rooms and relax while being prepared for the scan.

The sugary, radioactive substance they inject you with for a PET scan is attracted to muscle movement, so lying down and resting ensures the liquid is attracted to major moving organs like, in my case, the heart rather than moving arms and legs. They actually prefer it if you have a bit of a sleep, so I oblige.

The transit nurses who accompany me to and from the scan tell me later I snored. Not obtrusively, but just enough to show I was happily out to it.

The scan itself is all rather standard and anticlimactic, in fact I just about doze off again!

I’m zipped and zapped and rolled in and out of what appears to be a giant, multimillion dollar, electromagnetic donut.

The most unusual part comes after the scan when I’m ushered into a (lead-lined) changing room (the doors in this place are all incredibly heavy) and told to wait in there for a while, as “You’re still a bit radioactive”.

Riiiight…

A Wellington Free Ambulance takes us back to Wellington Hospital and I spend the rest of the afternoon sitting around, trying to ensure any temporary, radioactive-induced superpowers I may have acquired don’t irradiate anyone, make anything explode or accidentally microwave food by staring at it too hard.

We get there, sadly, without incident.

The day before the PET scan I was just about ready to start climbing the walls – Not through cabin fever (I was allowed to go for a wander into Newtown and get a shave and haircut at a barber shop a few days before), but just the lack of general exercise.

I want to run, I want to bowl, I’m feigning on and off-drives in the corridors because my arms and legs are getting bored from inactivity, but the ever-present fear of tachycardia returning limits what I can do.

I’m just about to ask the Cardiologist what exercises I can do when he notes there hadn’t been any sign of the VT for at least two weeks, so he’s sending me down to do a fitness test on a treadmill to see if the tachycardia returns under stress / exertion (of which there is sod all in daily ward life).

If I can survive the treadmill test without any arrhythmia it also helps make a good case for letting me go back home to Napier for Easter Weekend! The doctors are aware I’m far from home and missing my family, so every little bit helps.

So later that morning I’m wired up to heart rate monitors and put on a treadmill with a technician and a House surgeon keeping a close eye on me. The test is set to last about 15 minutes, with the treadmill‘s speed and incline increasing every few minutes.

I only make it to about six and a half minutes before my legs give up on me – Nothing heart related, just a lack of fitness and condition after spending the majority of two weeks sitting and lying around being inactive, which annoys me.

The up-side of the exercise, um, exercise is despite pushing the heart rate higher than it had been in weeks, there is no sign of tachycardia! This is a very good sign and gets me closer to home, if only for a while.

“Easter Thursday” arrives and, despite being told the results for the PET scan would take up to ten days, my Cardiologist is able to give me the results right away.

They are: Nothing.

We had been hoping that there was another, far more accessible growth like the one on my heart in me somewhere.

There isn’t.

Back to the cardio-thoracic drawing board.

On the upside PET scans are primarily used to detect cancer and the scan has detected nothing cancerous either, which is a good thing.

The heart surgeons will have another get together and figure out how they are going to do a biopsy on me, but that will take a few days and it’s a long weekend…

So they’re sending me home for Easter!

The Hawke’s Bay Air Ambulance is bringing someone down that afternoon, so I and three other HB patients get to hitch a lift back home on it.

Home at last!

Albeit for only a few days…