Wednesday, January 08, 2014

Happy New Year 2014, and why I haven't been blogging

Well readers, for those who have stuck with me, you'll have noticed a paucity in posts, as I have been a combination of uninspired and very busy in the past few months.

Quite simply I can put it down to real life consuming my time and energy to an extent that meant that, beyond outing Gareth Morgan for his naivete over North Korea, my attention has been elsewhere.

In part it has been work, which from May till early December kept me mostly consumed for a good bit over 40 hours a week.

In part it has been the drawn out process of jumping onto the London property bubble (which still isn't over).

However, it has also been time and energy taken by four trips in under six months to New Zealand to help and be with my terminally ill father, and help my stressed and regularly distraught mother.

So for now, I'd like to talk about my Dad, as he remains with us, albeit not as active or as cheerful as he usually is.

I'd advise you to not read any further if you are squeamish or easily upset.  What comes includes some graphic descriptions of his condition.

Four years ago my Dad was diagnosed with laryngeal cancer, and was treated with radiation over a period of several months.  Whilst this seemed to shrink the tumour, it didn't clear him of the localised cancer, so in May 2012 he had a total laryngectomy.  His voicebox was removed entirely and his trachea disconnected from his throat, so that he would subsequently breathe through a stoma, and talk by putting a thumb over the stoma forcing air through a speaking valve.  He would be reduced to eating soft foods from then on.  

There were complications with the surgery, but eventually he was discharged from Auckland Hospital and given the all clear late in 2012.  He faced a prospect of many years ahead, with the key constraints being a more constrained diet (nothing crunchy and everything very much bite sized), and a more restricted form of speaking.

However, in March 2013 he was told the cancer had returned and was no longer treatable.  He was told, rather bluntly, that he wouldn't make Christmas.  For a man who had stopped smoking back in 1988 (although all of his hospital notes say "has stopped smoking for more than 1 year", as if he was some fool who is now a burden on them for having once been a smoker), and had subsequently maintained a high level of physical fitness, taking one hour morning walks, doing weightlifting in the garage and making sure he looked after himself, it was a very cruel blow.  Particularly for someone who through all his life has been almost the poster example of optimism and energy.   Someone who grew up in wartime Glasgow, left school at 15 and never claimed a welfare benefit in his life, applying himself to opportunities as he found them and created them, once an electrician, then a shopkeeper, then stationery clerk till eventually becoming administration manager at the NZ Dairy Board.  He worked hard and loved life, would be almost always whistling, joking and smiling.

Laryngeal cancer took the whistling, and in the past few months it has taken more as his life has become much more limited.   In June, Dad was told he might suffer a catastrophic haemorrhage, whereby he drowns in his own blood because the cancer has eaten into an artery near his trachea.  However, then he could still potter about in the garden, play games on his Nintendo Wii and pretty much fully function as he usually could.

However, by September it had been getting increasingly difficult to consume enough nutrition by mouth, as the cancer was affecting his ability to swallow.  So he had a PEG installed, so he could get nutritional supplements directly to the stomach.  By October, all his nutrition was by PEG.  Eating and drinking had ceased.

Although he had a speaking prosthesis allowing him to talk, that would need replacement every three months because of wear and tear.  By November, it was too risky to replace as doing so might trigger a catastrophic haemmorhage.  So now he cannot speak.

His daily regimen is to feed himself by PEG with a complete food alternative called Fortisip.  He has to add around the same in water, or he will become dehydrated (and for a few weeks this happened, and he became disorientated and upset before ending up in hospital and his water regimen was more clearly determined).  He also ingests by that means supplements for calcium (as his parathyroid has been eroded, it has interrupted his ability to manage calcium, which had been making him faint suddenly as this affected control of blood flow to the brain) and to minimise bleeding in his stomach.   He also ingests paracetamol and morphine as required for periodic pain.

However, that's not all.  At least twice a day he sits with a nebuliser, essentially forcing steam laden air over his stoma, to moisten his respiratory system to allow mucuous to be produced.  During that half hour procedure, he coughs up thickened blood almost every time.  It is after this that my mother is nurse.  For she has to apply suction to his stoma, protected by a stent.  Replace the bloody stent, inspect the cancerous stoma, apply dressings around the edge and wash the gauze bibs that he wears over the stoma to filter the air he breathes, and also because he cannot control his coughs - and may eject bloody phlegm at any moment.  Beyond that, he has sores that have emerged around the vicinity, which weep, and the District Nurse has to replace a dressing with a drain every couple of days.

My Mum has been nursing him for this now for nearly two years and only recently got some help for this, as it was taking a toll on her health.

I spent Christmas and New Year with them both.  Dad couldn't have any Christmas food, and his conversations are almost entirely undertaken by writing.   However, he still could bring a smile to his face, although he admits life now is both boring and upsetting.  He can really only watch TV and read, not having the energy to do much else, and frequently being cold.

Both he and my Mum are waiting as the proverbial sword of Damocles has swung close several times in recent months for him to recover.  They breed them tough in Glasgow, especially ones that gave up smoking years ago and only enjoyed the occasional tipple, rather than treating Scotch like it came from the tap.  

For a gentle spirited man with a wicked sense of humour, a strong sense of right and wrong, and a complete unconditional dedication to his family, it is a painful ending for him and for those who love him.  It is the stripping away of parts of one's life that you take for granted and the sudden ending of time for one had the energy, ambition and means to do a lot more travelling.

He isn't bitter from all of this.  Certainly not blaming tobacco companies for his fate, not least because the vagaries of cancer don't make very much clear. Laryngeal cancer is directly implicated in smoking and heavy alcohol consumption.  Having not smoked for 22 years, and never being a heavy drinker (and I don't mean by Glaswegian terms either), it seems like he has been very unfortunate. The high success rates seen in the treatment he got, including the highly invasive removal of his larynx, also seem to make his condition "unfair", if you believe circumstances are dished out by some higher authority - which he doesn't.  He long wanted to visit Canada and take the train trip across the country, but he wont be doing that.  Fortunately my Dad says he has no regrets, except perhaps smoking for longer than he did when he remembers constant messages about the health risks.   He only blames himself for that, although he also thinks if anyone saw him today, it would make them think twice about what smoking might do.   However, life isn't fair and nobody can make it fair.  It is what you make it.

So part of my time has been to be with him, to have quality time, to help make arrangements that need to be made, and to prepare for the inevitable.  That time has been precious, and has cost me with unpaid time off work (but has helped bolster the finances of six airlines in the meantime).  It remains a long drawn out mourning process, which only hurts because his life was good and as he lived it, others around him enjoyed his company, his advice and his humour.

So pardon me if I can't get too excited about politicians or anyone else who deals in hyperbole, control, lies or any other snakeoil.   Likewise, I didn't respond to Gareth Morgan's email to me personally about our previous exchanges - which all happened whilst I was in NZ to visit Dad and help out with a medical crisis.

From all this I have one simple point to make - embrace your life today, and if it isn't what you want, then do something about it.

Your time is limited, and you don't know when one day you might be told that "you wont reach Christmas", or that one you love may be told that instead.

For the most precious scarce resource you have is time.  You wont have 2014 again.  Don't put off things because you think you'll have plenty of time to do the things you want to do.

You're a long time dead.  

5 comments:

Mark Hubbard said...

Hard times for you and your family, Scott. All the best to each of you. And yes, it does put life into perspective. Carpe diem.

Richard said...

Whatsoever thy hand findeth to do, do it with thy might; for there is no work, nor device, nor knowledge, nor wisdom, in the grave, whither thou goest. - Ecclesiastes 9:10

workingman said...

Happy New year and I hope you get through this year as best you can. Your blog is still on my watch list, and Feedly kindly popped up this post for me to read.

FreeMack said...

Thank you for sharing so personally.
So good to hear some one accepting lot without guilt or blame or God.

Steve said...

Hi Scott,

We lost a dear friend pre-Xmas due to an accident, and what you say about not putting things off, and doing what you enjoy is so true.

Your post brought a tear to my eyes. All the best to you and your family.

Steve.