Ooooh, the pain!

I’ve just had my quarterly Zoladex implant. Having taken quite a few of them “cold turkey” in recent years, I must be getting soft. I made up a patch with some Emla cream and stuck this onto my skin in the approved area and the implant went in with less pain than usual. But I could have used more cream.

While waiting for the nurse practitioner to punch the Zoladex in I studied the notices on the walls, especially the one that states a patients’ rights. It’s a lot different from what I might have seen twenty years ago. Over and over again it says I have a right to make decisions about my treatment. It’s pretty impressive and inspires quite a bit of confidence. My views are, apparently, quite important.

All very fine, until the time when I get into that last stage of care where nothing anyone can do for me will make any kind of difference or relieve the waves of pain that may be washing over me. Then they will have to say, “Oh, sorry, your Patients’ Rights have just run out. We can’t do anything to ease the intolerable pain we know you are suffering. You just have to put up with it. We just hope it won’t be too long...”

It ought to be a terminal patient’s right to ask for  - and be assessed for - physician-assisted death. It ought to be the first principle of hospice therapy that an easy and comfortable death, one way or another, is the right of every terminal patient. We must change the law. 

Old Age is No Fun

In the 1970s I thought a lot about work and leisure. I developed a theme from, I think, Earle Brill, in an interesting little book titled Sex is Dead, that work was not all it was cracked up to be.
The idea came from the ancient Hebrew myth that the punishment of Adam and Eve was not just that they were thrown out of the Garden of Eden. Adam was told that only in the sweat of his brow would he get bread. So "work", in this context, is not the virtue that our Puritan forebears would have called it but is actually a punishment. It was not intended to be fun or enjoyable, but simply done.
Out of this came the Mission to Leisure which led the Dunedin Mission to make considerable investment  in the holiday camp site at Kawarau Falls. We instituted some special programmes to help people make the most of such leisure as they had.
Lately I have been taking the Garden of Eden story a little further. Not only is Adam told that he is going to be punished by having to work; but Eve hears that only in pain will she bring forth life. Pain, severe pain, I suggest, is also presented in this ancient context, as a punishment. I didn't think much about that in the 1970s.
But, my word, in later days I have become very conscious of the amount of pain that is experienced in the world of the descendants of Adam and Eve... The sheer scale of deprivation, dislocation and every kind of pain and suffering experienced by millions of our brothers and sisters in other lands beggars description. Even with the most modern technology to bring the problem right into our living rooms, we cannot get our minds around the sheer dimensions of the problem.
And in the last couple of years in this residential community of older people, I've become quickly aware that old age is not always so much fun, either. We may have all we need of shelter and food and affection but the maladies of age that we joke about among ourselves are sometimes more than some can bear. Several people in one of our cities have died in Council or State flats over the last year or so, with no one to miss them until the stench disturbs their neighbours. It could conceivably happen here, too, in this community of 350, even with emergency call-bells in all directions.
Singing out to small groups of "over 60s", our Barbershop quartet has seen groups that were, actually, over 80 or more, many of them transported in vehicles or using walking aids of one kind and another. Some of them said the simple hot meal provided afterwards would be the best meal they would have all week. Old age, for many of them, was not much fun - even with our entertainment!
I have wondered if the God of the Garden of Eden story might not have gone a bit further and said to both Adam and Eve "And, by the way, when you get old, don't count on that being a Garden of Eden, either...  there'll be more pain that is all part of the punishment... You aren't expected to enjoy it, just endure it."
A few modern critics would suggest, as the Puritans once did about work, that pain and suffering are really good for you. But they are wrong. It is that bit of thinking that encourages me in my modest campaign for the right of Choice at the End of Life. I just don't believe that suffering and pain and misery have any virtue in themselves at all. At the end of a life of working and bearing trials of one kind and another, there is no justice, never mind compassion, in a demand that we must continue to suffer long after our bodies and minds have decided to give up. Some Right to Life is fundamental, but so is some Right to a Good Death.
Of course, we don't base all our thinking and acting in these days on an ancient myth and its very simplistic views of right and wrong and good and evil. But those ancient thinkers seem to have sensed something that rings bells for me. The sweat of labour and the pain of life's beginnings and its endings, are not part of some great scheme of things. They are just reminders that in some way, we may be less than we can be And we must do the best we can with them. And there may be no lack of virtue in merely putting up with the one and choosing the avoid the worst of the other.

Spasms of pain

In Aussie in the early 1990s Bev and I enjoyed occasional glimpses of Andrew Denton in a Saturday night TV comedy show. Now I am hoping to hear him at the annual meeting of the Voluntary Euthanasia Society in a few weeks' time. Andrew has spent most of a year inquiring into Physician Assisted Death around the world and his podcasts on the Wheeler Centre have encouraged many of us to press for law change here in NZ.
I have been intrigued with his account of his father's death: "at the end, it was a violent series of spasms. It was as if something had crawled inside him and was tearing him apart from the inside."
I was immediately reminded of the pains after my first major surgery. Obviously not normal post-op pains, mine went undiagnosed and untreated for 36 hours. It was excruciating for up to half a minute at a time. I described it as being stretched on a rack with every part of my body from shoulders to knees trying to tear me apart. I wrote a three page report for the Hospital, but heard nothing back. Later someone suggested I had experienced
 tetany spasms.
If that kind of pain is to be my lot in my last hours it will probably be too late for what I would have wanted to do earlier: to have the choice of a peaceful and gentle death before that happens.

We need to change our thinking and change the law.

PSA much the same...

When we saw my consultant a few weeks ago he wanted to step up our routine tests to two-monthly. He was concerned about the effect of the heavy medication on my liver. But I suggested we continue with three monthly checks and that was agreed. With three-monthly implants and consultations I felt it would keep life simple if the tests continued on that basis, too.

Well, over the last couple of weeks I have been wondering how it was all going. I wasn't overly worried, but having been doing PSA tests every month I was a little curious as to how things were going.  So last week I presented myself for the three-month tests at just two months. The girl doing the job queried the order and I said airily, "Oh, we've decided to do it every two months" and she went ahead. 

My GP's nurse kindly looked up the scores for me next day.  PSA still 24, still up, but almost exactly static for the third month in a row. And my liver, she said, was "great". All very encouraging....

HOW many Submissions?

I hear that the Select Committee on Health may have no other topics of business for some time.  We are told that the staff have been sorting no less than 15,000 submissions received by 1st February. They are reported to be somewhat overwhelmed by the amount of work involved. The issue of "voluntary euthanasia" for some terminal elderly is alive and well and our people have been having their say.

It will be really unfortunate if the sheer amount of paperwork gets in the way of a good discussion. And it will be fascinating to see the analysis of the submissions. Given that quite a few people will have just written statements such as "I am against any form of doctor assisted death" (surely that is not so much a submission as a vote, of course) there must still be a large number of citizens who have given serious thought to the issue.

But how many points are there to make on this matter? Isn't it probable that we've heard there is to hear on both sides of the issue, that we have heard all the arguments, that we have access to all the necessary facts? If my request to be heard in a personal submission is accepted, I can't imagine anything I can say that won't have been said by dozens if not hundreds of others. In a way, I won't be upset to be declined an appearance.

What the country needs now is for Parliament to make some kind of decision that reflects - to an appropriate extent - the declared views of the majority of the population. The Committee can help this process by a thorough analysis of the submissions and the issues and, perhaps, a reasonably prompt and decisive report to Parliament.

"Professional" Simon O'Connor?

I see that MPs are firmly supporting Simon O'Connor's suitability to chair the inquiry into dying in New Zealand. They argue that he will be thoroughly "professional" in handling the matter dispassionately regardless of his personal beliefs.

"Professionalism" seems to be a good standard to judge the situation. I agree, it is also the crunch issue. But for professional people caught up in any kind of conflict of interest the problem is not the conflict itself but the way in which one handles one's personal beliefs in the context of the wider issue. I think O'Connor has let himself down on this point.

Further, in politics, as in many spheres of life, the issue that matters is not one's personal opinions nor behaviours but the public's perception of these. Now that the question has been raised, many people may sense that the Kiwi deal of fair play has somehow been over-ridden. No amount of political spin from the Beehive will completely erase a vague sense that the Inquiry and its outcome have been tarnished in some degree.

If O'Connor lacks what we used to call the "statesmanship" to step aside as Chair, the only outcome that can possibly exonerate his attitude is that the Committee is bold enough to overcome his strongly held views and come up with a report that will be in line with the great bulk of public opinion.

Ironically, it will probably come to be called "The O'Connor Report".

My earlier posts on this issue:  30 March and 31 Jan 2016

The Report

We had our three monthly consultation today, a month behind schedule, but with the advantage of an extra PSA test sneaked in.

The Cyproterone commenced in December halved my PSA in three months and the latter has stayed at that level for some further weeks. On the face of it, this fifth intervention since I got the diagnosis has given us several more months of quality lifespan. The cancer itself is still not making itself felt, and some of the side effects I've been experiencing have been successfully reduced.

All in all, a very satisfactory prospect, with the huge increases of last year stopped and even reduced for a time.  Cyproterone could be increased in strength if my PSA starts to climb steeply again.

However, the combined medications are likely to have some effect on my liver sooner or later and we will continue to monitor this regularly. And ongoing Zoladex could undermine my general health and fitness. In a period in which I have just lost a couple of kgs (due to a really bad lurgy?) that's something that I can see I have to continue to work on.

But the overall picture seems to be of rather better prospects than we were facing three years ago.

"Turkey" O'Connor?

Three months after I suggested that Simon O'Connor should step aside and ask someone else to chair the Health Committee of Parliament, Gareth Morgan has now come out with a strongly worded criticism of O'Connor's bias in the Chair.

I hope that there will be some more consideration of this issue in the public arena. It needs to be seen that, as one of my readers responded to my January post, the situation is a bit like asking a turkey to produce a report on the merits of Thanksgiving.

"Struggling to stay alive..." ? Who? Me?

One of my Facebook friends has just complimented me on my "struggle to stay alive".  This expression, or some variation of it, keeps turning up in the context of terminal cancer. "After a long battle with cancer" seems to be the way to start public notifications of this kind.

I have many times stated how inappropriate this expression seems to me. I guess it must be true for some people whose entire life's purpose may have to revolve around dealing with the pain and unpleasantness of cancer and, indeed, of the various therapies proposed by the white-coated ones who spend their lives carrying out an absolutely amazing battle of their own.

But for me, this is not a helpful way of thinking about my living and dying. In one of my recent videos I stated quite explicitly that I don't want anyone using that kind of language to describe my relationship with this wretched disease. I think it's in this one but possibly it's here. (Maybe I should have a bucket list of short videos worth making....)

Anyway, here's what I said to my Facebook Friend:

Now, now, Michael, you must have read my views on expressions like "struggling" with reference to life and death. I am not having a "struggle to live". I have a serious cancer but I am accepting the generous help of the Health system (within limits!) and am just getting on with living. I don't even have a "bucket list" (well, I would like to get our Village's sound system working properly before popping off - nobody else around here has much idea about it...). And, selfishly, I would like to have some opportunities to speak more about the choice for a decent death. That's plenty to live for right now! But when death comes I'll be ready and the notification won't say "after a long struggle with cancer" if I can help it!! Cheers!

A Methodist Bird?

The stunning Mollymawk on the right was one of the highlights of our brief trip out onto Fovaux Strait while we were at Stewart Island.

The one with the yellow striped beak was named by or for James Buller, who was the son of one of the first Wesleyan Missionaries into our country in the mid 19th century.

The white-capped on the left is also a majestic bird but wouldn't any Methodist be delighted with the Buller's Mollymawk?