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?

Twitching

Yep, we've been away in the bottom of the South Island doing some birdwatching with my sister Marion from Canberra. We selected a few likely places where we might see birds that are not so common. We were well rewarded.

A personal highlight was some close attention from a wild Kaka that appeared on the deck of our rented holiday home. We also had the very rare experience of seeing two of these magnificent birds mating. They don't do this very successfully very often, apparently, relying on the occasional good crop of "mast" exuded from forest trees. And when the beech mast is doing well, plagues of introduced wasps often prevent the birds from getting the benefit of it.

But everywhere we went for ten busy days, the investment of our Department of Conservation in sanctuaries, predator-proof fences, poisoning and monitoring programs, information centres - not to mention clear roadside notices - greatly enriched our self-guided experience. We should be grateful for our country's growing awareness of the special nature of so much of our environment. It says something of our respect for creation...

However, investment in our environment is also good for tourism, of course - we found overseas travellers everywhere we went. But there are other kinds of investment that are needed for our vulnerable babies and children and their under-privileged parents. How can we maintain a balance in allocating our limited tax resources for the best good of all?

RIP LSM

The Lay Ministry Support Group of the Methodist Church of New Zealand - Te Haahi Weteriana O Aotearoa - will hardly be expecting my congratulations on their offering which arrived this week.
The Group seems to be keen to be invited to do local training of lay people. They suggest a list of twenty topics for workshops they could present.
Lost somewhere among the twenty is "exploring Local Shared Ministry and Team Ministries". Well, I guess I should be pleased to see it at all. But alongside such offerings as Story-telling and Retreat Days and Tools for Decision-Making, I cannot judge if LSM is being damned with faint praises or praised with faint damns.
LSM was never about lay people learning a few new skills to help them make more of a contribution to their local church. LSM is about a completely new way of "being church". It's about the local people wresting control and management of their small congregation from the clutches of stipendiary ministry before their communal life is extinguished through sheer economics.

Of course there are still a few decent size churches where the luxury of paid ministry can be afforded. Let them indulge in any number of workshops that may or may not be of interest and relevance to their people - and may or may not fit into the strategies of the local clergy concerned. And of course there are many Pasifika and Asian congregations who are doing just fine in their understanding of the dynamics and strategies of local church.
However, most of the denomination's papalagi (non-Polynesian) congregations are small and tending to dwindle. They are all too easily persuaded to give up the struggle to meet the costs of ministry. In centre after centre for five decades, Methodism has abandoned a local witness because it could not see beyond paid ministry and expansive properties.
By contrast, LSM is a way forward for such congregations. It's an opportunity for local members to completely re-think and re-strategise their way of "being church in our community".
Oops, beg pardon, I see there's a workshop about "Visioning for your Future". Oh, well, that could be a second really useful item on the list of twenty if anyone in the Group actually has a hopeful vision for such congregations...

(I have nicked the cartoon from Tim Norwood... I would have nicked it earlier if I'd seen it earlier.)