Where's it gone?

I've just popped onto the Parliamentary Health Committee's website to view my submission which I sent in last week. Lo and behold, the published list is only complete up to 9th Dec.

With only six weeks until submissions close, it doesn't look good that the office is running a couple of weeks behind in getting them into the public domain.

Furthermore, a simple request I made in connection with the submissions process remains unanswered.

Lecretia, Herald New Zealander of the Year

 

I am absolutely delighted that Lecretia Seales has been named the Herald's New Zealander of the year.
"She was brave and inspiring, sharing something as personal and private as her death for the advancement of a human right"

If the Parliamentary Committee comes out in support of submissions such as mine, it will be due in large measure to her.

If nothing changes in the next year or two and I have to endure a painful, drawn-out death, I don't think I would have what it took for her to do what she did.

My Submission

Some months ago, I wrote here -

Members of Parliament, hear me: I have terminal prostate cancer.... I believe it is a human right for me choose to die a dignified, planned death when I feel the time is right. Make it legal!

Well, after a lot of work, my submission on Physician Assisted Dying has gone off to the Parliamentary Health Committee. I am supporting legislation to permit choice of some form of assisted dying in New Zealand. Having been active in pastoral care of people in the last stages of their life many times I have had some experience of some very harrowing and undignified deaths, I have a little first-hand knowledge of the issue.

However, the intensity of my feeling arises as much out of the possibility of having such a bad death myself. Of course, everyone with prostate cancer is told “But you probably won’t die of it”. See here for my half-humorous commentary on that theory. But, at my age, and with my PSA velocity, I need to be aware of the prospect of a somewhat unpleasant death.

So I have produced a substantial submission. There’s not much new ground in my argument. I think that most of it has already been said by other people. But I have tried to set out what I have come to feel about the negative personal and theological implications of deaths that have been punishing and cruel. In my own case, I feel I should not have to suffer when palliative care is not able to take the pain from me. What some sensitive medical people are now calling “ultimate palliation” should be available to me to bring about the end of an intolerable existence, should that occur. Such action must be at my request, and in the context of proper precautions and reviews. But I need to have the choice. 

No palliation that does not reach out to this extent satisfies my understanding of the compassion of Jesus. To stop short of properly assisted death when untreatable pain has reduced living to mere existence is to disrespect one of the central tenets of modern medicine. It's found on the wall of every hospital these days: the wishes and needs of the patient must be taken into account in all treatment. 

I submit that it's time we followed that principle to its logical conclusion. 

But the Parliamentary Committee on Health is receiving a large number of submissions from those who disagree with my position. Some offer the most bizarre arguments, based on assumptions that are not part of any responsibly drawn up proposal. The Committee needs to hear from more of the silent majority who appear to support change in the law. Just a simple letter with your name and address will do. If you can include a personal experience of a bad death, that would add weight to your contribution. But just getting something on paper will strengthen this vital cause. 

Submission time!

14 Dec
I've at last made a start on my submission and sent a draft to a few friends, many of whom have offered encouraging comments. With a bit more work it should go off today or tomorrow.

As I said a few days ago, it's hard to find anything new to say, especially when people on both sides of the discussion hold their beliefs very firmly. But I guess what's important is the individual and personal nature of a submission and I think mind does that something of that quality about it.

I have asked to present it in person but that may depend on whether or not the Committee is able to hold hearings in Auckland as well as Wellington. 

5 Dec
I've been trying to follow the Voluntary Euthanasia debate while we've been travelling around these last two weeks. One of the very impressive crusades is being conducted by famous Australian broadcaster Andrew Denton in ABC's Earshot series. 

I plan to make a submission to the Parliamentary Select Committee on Health but it's very hard to say anything that hasn't been said before. And there are so many arguments on both sides of the issue. But I made a start on one or two occasions while the G-GS (see 23 Nov) was asleep at Blenheim and a first draft is beginning to shape up.

A difficulty for me in all this is that I keep thinking of more light-hearted ways of expressing my concerns about this very serious topic. For instance, I am not at all sure if the effect of my submission will be strengthened or diminished by an ending like this:

'All through my journey with hormone treatment, friends—becoming aware of my diagnosis—have said, “Dave, you’re looking great.”  They haven’t realised that medication has filled out my face (not to mention other parts of my anatomy!) so of course I look good. I’m not unduly vain, and I may not be as gorgeously cuddly and rounded as my first greatgrandson who arrived this year but I’ve been grateful to “look good”. Recalling the terribly gaunt, emaciated faces of cancer patients in the final stages of long drawn-out deaths, what I ask of you now is that when my death comes, perhaps a little prematurely, people may be able to look at my body and say, “Gee, Dave, you’re looking great”.'

Another Quarterly Review

1 December
Well, today we met a different oncology consultant and had a really thorough talk through my situation. He's not particularly committed to PSA measurements and did not feel that Abiraterone was indicated for anyone in my present condition.

His over-arching concern was "How does the patient feel". That approach jelled with my own view. On that criterion there would be very little to discuss in my case - I still seem to be completely lacking any symptoms of cancer.

My Doubling Time for PSA over the last year appears to be about four months but his calculation suggested six months. That's right on the border between "This is serious" and "Well let's watch and wait for a bit longer". Being the patient and not the expert and always on the side of doing as little as possible, I was happy that we opted to do nothing dramatic for another three months.

We will add Cyproterone to my treatment - it's another anti-androgen and might help the slow the cancer's growth. And I will go onto Vitamin D for my bones. We have put PSA testing back to once a quarter but will do a CT scan next time round. I enquired about the possibility of contributing to another drug trial and found that he's very keen on research and will let me know if anything appropriate comes along.

All in all, an encouraging interview.  I'll be talking through it all with my GP tomorrow when I have my quarterly Zoladex implant. I think I should be getting another Eclasta infusion, too. Gotta keep those bones in good shape!



30 November
I had my bone scan earlier in the week and a quick look at the monitor suggested that there's more activity in more of my spine than last year. Today I got my quarterly PSA result from yesterday's test. Actually, I have had monthly PSA for the last quarter, as the dramatic rise in the first half of this year seemed to indicate the need for closer monitoring.

As it has turned out, the rise is only about 4% for the month, though the doubling rate for the year is 3.7 months. That's high enough to be a concern but most of it was in the first half of the year when there was a dramatic and massive increase.

So I think we will go to the consultation on Tuesday prepared to agree that no major action is appropriate at this time - unless there's a move to try a further burst of targeted radiation in my spine. I guess my agreement will depend on how targeted it might be ....  Well, Tuesday will tell...

Meanwhile there are lots of things to do. And lots of sings to do - our Barbershop Chorus and Male Quartet  have several appointments between now and Christmas. And I had a bit of excitement on Community Patrol yesterday with a distressed dog locked in an airless car. It was amazing how long it took to get action about it. And how many people said it wasn't their department! Onlookers were ready to smash a window when the owner finally turned up. And we didn't tell anyone we had a hammer in the patrol car... Ah well, it all added to the interest of life for the day....

"Christmas" again

While the world trembles in the face of terror and destruction, global warming and economic doom, Auckland is having a row about Christmas.

It seems an Auckland group is calling its annual end of year party a "Festive" party, deliberately avoiding the word "Christmas". Considering this would be pretty normal practice in the USA and a lot of the rest of the world, the number who are protesting the loss of "Christmas" is quite remarkable. From the national Race Relations Conciliator and the Anglican Bishop of Auckland to the worst kind of cultural bigots to get their few minutes on talk-back radio there's arisen a storm of anxiety that "their" Christmas may be taken away from them.

It's all a bit over the top. In the first place, Auckland Regional Migrant Services didn't want their essentially multi-ethnic constituency to feel excluded by the term "Christmas". That seems absolutely reasonable. Also, Christmas was originally set on the date of a pagan festival and bears no relation to any date that might ever be proved to be the birth of Jesus. And, as if that weren't enough, this country has been termed "the most secular society in the western world" by at least one observer.

I am reminded of a cartoon from the 1960s showing Christmas advertising with a tiny nativity scene sandwiched into the middle of it all outside a church. One onlooker says to another, "What will these Christians do next - now they're trying to take over Christmas".

It's not so funny. The churches in this country ran big campaigns to "put Christ back into Christmas" a few decades ago. I'm not at all sure that they did either church or society much of a service. I am not convinced that a nativity scene, probably including three kings who aren't in the bible (the "wise men" who are there should be celebrated at Epiphany rather than Christmas!) are any more meaningful than a nice blue and gold Northland beach scene with some pretty pohutukawa flowers and a simple greeting.

Projecting our faith and beliefs onto anyone else, be it ordinary New Zealand unbelievers or people who follow other faiths with commitment, is just not acceptable. In fact, come to think of it, it's not acceptable even among Christians either. Christmas may continue to be a feature of our society or it may not. But let's not kid ourselves that it has profound meaning for the great majority of us. Or that the minority who find meaning have a God-given right to thrust their views on others.

Next Sunday, I have been invited to offer what may well be one of the last opportunities to share my faith. Well, whatever it is, it won't be an in-depth reiteration of the Christmas myth. In the context of the stupid row that's going on over Christmas, think I might talk about children.

Change in the routine

We've had a wonderful couple of weeks away. We flew to Blenheim to be enthusiastically received by our first great-grandson Cohen David, rode the "Coastal Pacific" train to Christchurch, rental-drove on down to Dunedin to spent time with best friends Shirley and Joan and then trickled back up the South Island for another week in Blenheim.
Great days, gentle for the most part, with some long-standing friendships refreshed and some lovely country scenery revisited. The last day was a little exciting as we were on staff standby tickets for Auckland on the day the Methodist Conference was concluding in Blenheim. We had to wait around for a couple of hours for a long detour right down to Christchurch then Auckland - but we still got home in time for an hour or two with the village Barbershop Chorus rehearsal and cuppa.
The South Island and family and friends there will always have a special place in our hearts.  Then within a couple of days the Blenheim family were in Auckland and we got to share the custody of the G-GS with his Nana Christine for 30 hours. What a little smiler! He was passed from hand to hand and car to car with only the best of goodwill for everyone in sight. He crawled all over the place and drank in the sights of every new environment with relish. He figured how to release the three drawers I'd clipped together with a stick more quickly than your average kea. And kea outsmarted chimpanzees in a television documentary once. Just imagine: a G-GS who at eight months is smarter than a kea or a chimp...
Saturday was also our 56th wedding anniversary. What better way to celebrate it than a time of thinking with much pleasure about friends and family and life and living?
On Sunday I made a nostalgic visit back to St John's College where the Methodists had their usual monthly service. It included a farewell to Val Nicholls, a special friend who's been on the staff for the last few years. She invited me to play the piano for the service, a much appreciated gesture.

Now it's back to a couple of weeks of testing and checking as I come up to my quarterly review... And I have started serious work on my submission about Voluntary Euthanasia....

Singing at the local Hospice

My GP phoned this morning to tell me about my PSA. I was a bit ahead of him, having asked one of the nurse practitioners to look up my file and let me know. She was supposed to tell him that I knew but he rang anyway and we had a good chat about the situation. He'd like to feel that something was being done about it but we agreed that the routine three-monthly oncology interview in December would be soon enough.. I will have had another bone scan by then and we'll also have a more detailed record of the ups and ups of my PSA over recent months.
But his call has prompted a little more thought than usual and this morning I turned back to the draft of my submission to the Parliamentary Select Committee on Health. I'll support any change in the legislation that recognises that the right to life includes the right to be able to end life if it has become totally unbearable and meets some specific criteria.
This rush of fingers to the keyboard, and the wrong time on my computer clock, made us a little late for our Barbershop Chorus's departure to the local Hospice to sing to them. There were more of us in the chorus than there were of them but it was a good time and we did pretty well for a bunch of oldies with a rather wide range of ability and concentration.
With my rapidly rising PSA in mind, it was a little ominous for me to walk through the Hospice and meet staff and patients, carers and volunteers. Whatever the outcome of the debate about Physician Assisted Death, nobody can detract from the fantastic work that they do and will continue to do. If that is where I am going to finish my days in the not so distant future, I couldn't imagine a better place.
But I am aware that a recent fund-raising appeal for Hospice was based around the lack of government funding for some vital pain-relieving drugs. The argument that nobody needs to suffer while dying seems to be not yet true. If our government continues to refuse to debate the End of Life issue, it must revise its budgets around total pain management.

Hanging in there with prostate cancer

The second of my regular monthly PSA tests shows 24% increase on last month but the average doubling time since March is still about 3.6 months. The slowdown since the horrific jump earlier in the year seems to be continuing.

It's about a year since I had the small dose of radiation on my lower spine and my PSA is now well above what it was when that was done. It looks as if the nett effect of the radiation on my PSA's progress is to knock it back for about nine months. That has to be a good result, considering the quality of life I have been enjoying over that year. My worst discomfort is still being caused by the medications, not the disease. After some 14 years, that's pretty good.

So life is continuing on its busy way. The book of Family Budgeting history is now online and I am starting some slow work on a print copy in case there is enough interest to justify a modest printrun. The Barbershop Chorus and especially the quartet is developing some very satisfying results and both of us have been contributing quite a bit to local church life as well as making our presence felt in the 360-strong Village community. Bev's set up a proper system of some mysterious nature for the indoor bowls group and I've coordinated a review of the audio system and its operation. I've done three CP patrols in the last few weeks and produced some good newsletters and a recruitment handbill. At home I've upholstered a rather worn dining chair and converted several hundred old colour slides for computer viewing and fitted a pair of novel but dubiously legal reading lights above our bed. But we've also been getting out and about a good deal, seeing a few good shows locally, doing some interesting walks and exploring some new corners of the region. Gosh, this is beginning to look like our annual newsletter - perhaps we'll be too busy to do one this year!

The Family Budgeting Story 1960-1978

About ten years ago five of us ancient family budgeters agreed to start work writing up the first decades of Family Budgeting Services in this country. But there was no money for a publication and, for various reasons, the project lapsed.
At the beginning of this year I decided to try to get it going again. On-line publication with free distribution could give the project some point.
Almost immediately I found I was the last one left standing and the experiences and memories were going to be lost. Head Office of the Federation came up with a modest collection of archives and also a remarkable thesis on the topic by Yvonne Burns, now of Melbourne.
It hasn't been the collaborative effort we had hoped for but at least there have been no editorial arguments. And yesterday the book went on line at Smashwords and is now a registered publication.
Considering the ups and downs of my prostate cancer journey during these eight months, it's been a pretty satisfying achievement. You can get it for nothing here.