Tuesday, March 04, 2014

So after all that

Dad was diagnosed as having terminal laryngeal cancer in April 2013 and was told he wouldn't see Christmas.
Well he did, and it was the biggest family Christmas we have had for a very long time.

I am not going to publish my eulogy to him on here.  He used to read this blog regularly and said I was bound to upset some people, but he enjoyed it.

So what I am going to say is to reflect on the dignified way he put up with the deterioration of his life and the inability of medical professionals he saw to treat his cancer.  

After all, he had had radiotherapy and been given the all clear in 2011, then in 2012 after repeatedly asking to get seen because he was having similar symptoms to before, he got his entire larynx removed.  That meant he would breathe through a stoma, no longer be able to eat food that wasn't soft (except in small quantities), talk by covering his stoma and could no longer have a bath (one of his pleasures was to sit in the jacuzzi in the garage and relax).  

That surgery was botched up, so he was stuck going to and from Auckland hospital for two months, whilst his neck was partially reconstructed.  After all that, he had 9 months of life thinking he had much more ahead, but no.  New lesions appeared that were apparently untreatable.  For a man who quit smoking in 1988, who enjoyed a whisky once a week, or a glass of wine with dinner, who was physically very fit (he would walk 2 km every morning up and down a hill), it seemed awfully cruel.   It was.

For his stoma needed regular care.  Twice a day sitting for 20 minutes on a nebuliser to moisten his lungs and trachea.

Several times a day (it went from about 4 to around 12 times by the end of the year) to have the stoma cleaned, the stent that kept it open replaced with a clean one, and for suction of the blood and mucous that would be coughed up uncontrollably (you can't hold your breath with a stoma, nor can you control coughing).  His voice prosthesis that gave him a quiet but still useful voice, needed cleaning twice a day with a delicate brush.  All of this care was done by my Mum, who soon got a routine in place to combine all of these measures over the months.  Whilst Dad could put himself on a nebuliser and could apply suction to himself, he couldn't clean the stoma or the voice prosthesis.  Every three months he would get a new voice prosthesis, until in November he was told it couldn't be replaced because to do so would risk a catastrophic haemorrhage. So he lost his voice completely then.

By mid 2013 he was unable to swallow food easily either, as it became a matter of making juices (which he did with aplomb as he bought a juicer in June, still with a gleam in his eye and a sense of life) from all sorts of fruits and veges, and mixed drinks like Complan.  He had a espesso machine and would make himself and other coffee too.  Almost all other foods became impossible as he would regurgigate without warning, so food was no longer a pleasure.  By September, he could no longer swallow liquids either, so had surgery to get a PEG inserted.  That is a tube directly to the stomach to allow for liquefied food to be poured straight in. So a new routine was to do this five times a day, eventually six times as his weight had dropped 20kg over a matter of five months.

So now he needed to feed himself with a routine, that included flushing out the PEG with water, dispensing medication through it, and then liquid food six times a day.

Of course what this meant was that around a third to a half of his waking time was spent looking after the consequences of the cancer.  Because it all got too much for Mum to be nurse full time and look after the house, she got home help to make beds and assist with cleaning.  Meanwhile, every few days a hospice nurse would visit, a district nurse would visit and there would be regular doctors' appointments.

By later in the year he also gained a large weeping sore around his left clavicle that needed a dressing with a collecting bag, which needed draining every two days, and by then it was becoming more difficult to do very much at all.  Some of his pleasures, like walking to the shops or library and reading a book, or gardening, were gone.  In fact by the end of the year he simply got depressed, which is not like him.  This is a man who really did always look on the bright side of life, who was always optimistic and didn't understand why people could get depressed.

So all in all, the debilitating effect of cancer was unkind and horrible.  However, he reached his 77th birthday in November, Christmas and New Year.  He did it with dignity and could still give a smile now and then, although in his final weeks he couldn't be bothered to even read, and barely concentrated on TV when it was on.   In the end, I am glad that Cranford Hospice was able to give him enough medication that he didn't witness the dramatic and bloody ending to his life.  

What does it all say to me?

Live life.  Pursue your dreams.  Be true to yourself and remember that one day you can have many hopes and dreams and the next be told, your time is more limited than you may think.  Dad had a lot more life he wanted to live.  He wanted to take the train from Vancouver to Montreal, he wanted to visit Scotland one more time, he was an adventurer, who took up new technology with aplomb and always thought he could pick up something new.  I bought him a Kindle in August for Father's Day, and he got straight into it.

His only regret was, understandably, smoking.  For even though he stopped so long ago, the damage it caused over 35 years of his life created a ticking time bomb.   He wasn't a stop-smoking fundamentalist, he'd never want to force anyone to do what he wanted.  However, it was clear that had he not smoked, the chances of the cancer would have been much much smaller.  There was, after all, an 80% chance of success for the radiotherapy, and 90% chance for the laryngectomy working.  He lost out on odds that were in his favour.

So now is the time to embrace life, to enjoy it, to savour it and to be the intelligent, warm, thoughtful and inquisitive person you were born with the potential to be.

Not because of a mythical afterlife - which Dad didn't believe in -  but because the most precious resource you have is time.

4 comments:

homepaddock said...

Your post is a tribute to the strength, courage and love, of and for your father and mother.

Rather than descend into clich├ęs, I offer these words:


If I should go before the rest of you
Break not a flower nor inscribe a stone
Nor when I'm gone speak in a Sunday voice
But be the usual selves that I have known
Weep if you must
Parting is hell
But life goes on
So sing as well.

Joyce Grenfell

workingman said...

Scott,

A great tribute by you of your father. I of course do not know him, or you, apart from through these blogs, but I can pick up so much of your father, and you, from these posts.

Best wishes in these sad times. I lost my brother in law 3 weeks ago, and we were not that close, but I miss him.

Anonymous said...

My uncle gasped out the last few years of his life never far from an oxygen bottle. Cigarettes and then a pipe did it for him. At the funeral there were plenty of exhausted grieving family members and friends. There was no tobacco rep there to say 'thanks for your business over the years' or 'sorry about our industry getting in the way of the truth when it came to the dangers of tobacco'.
This is a poignant piece, perhaps after your grief has diminished a little you could write telling us if this experience has changed, even a little bit, your libertarian view that the tobacco industry should be able to operate pretty much how it likes. Ian

Libertyscott said...

Thank you for your thoughts and comments.

To anonymous at the end, I have never said I thought the tobacco industry should be able to operate pretty much how it likes. Lawsuits should and have been brought about it fraudulently misrepresenting the deadly health effects of its products, and I support that. I support people actively promoting the negative health impacts of smoking and the right to prohibit smoking on their own property. Similarly, I wont shed a tear if they go out of business, and I find their practices in fraudulently promoting their products in developing countries to be reprehensible.

That's an argument for robust product liability laws and laws on fraud. It's an argument for actively avoiding investments in tobacco companies and to not do business with them.

Dad stopped smoking in 1988. Cancer didn't emerge until 2010, and he kept his physical fitness to a high standard.

He knew for years beforehand that it wasn't good for him, and took responsibility for not stopping sooner. He regretted nothing having done so, but wasn't angry at tobacco companies for it.

I've always personally despised smoking, but I still have no right to stop others ingesting what they wish, and for companies to sell them what they choose to ingest.

Perhaps I am utopian, but I do think that science and public pressure can be brought to bear voluntarily upon industries that sell products that are proven to kill their users.