My Journey, My Way

Throughout my interesting journey with prostate cancer the greatest inconvenience has been the hot flushes caused by the medication. I reckon I've had about 38,000 of them.

 When I first went onto Zoladex we discussed the possibility of another prescription to control these side effects. I considered the new set of likely side effects and declined this. I've managed the dramatic changes in temperature pretty well with three fans in strategic places around the home. And also with a fascinating technique called "the cooling breath" practised by America's First Nation people.

Last interview, my consultant offered a new product which he thought might help and I've been taking it for nearly three weeks. It's true I have a somewhat reduced number of daytime "hotties" but I've also had long periods of unaccustomed shivering with cold. And this is right in the middle of summer! And I am having to push myself to concentrate on anything as simple as reading a book.

I think I'm not going to persevere with this stuff very long. This is "My journey, My way".  I can take it or leave it. And that's how I want my life to end, too - My Way.

Let's get the law changed.

Argument weak? Shout lies more loudly!

Ken Orr, of the NZ Right to Life group, yesterday issued a new media release that I find deeply offensive.

He claims that those of us who support anything called Physician Assisted Dying or Voluntary Euthanasia are in fact proposing that suicide pills be issued to all 70 year olds. He has obviously not read the suggested Bill.

Part of my submission to the Committee on this issue has to do with encouraging them to concentrate on the proposal, not on twisted, perverted, imagined outcomes.

My predecessor at the Dunedin Methodist Mission, in the 1950s had regular "Wayside Pulpit" posters outside the Mission.  One that was still remembered by a member of my staff in the 1970s, was "Mud Slung is Ground Lost"...

Let's have a debate by all means. But, please, let's stick to the issues.

“You’ll probably die of something else”

I've updated this post up from two years ago, as its querky humour may help us focus on the urgent issue of making positive submissions to the Parliamentary Committee on Health.

You’ll probably die of something else

Again and again over the years since I was diagnosed with prostate cancer, experts and knowledgeable amateurs have assured me that it’s not all that bad. I will, they’ve told me, died of something else. I’m sure these Job’s comforters are partly right. But I’m also sure that they may not have thought much about the alternative deaths they so cheerfully offer me. Here are a few:

“You’ll probably get run over by a bus.”

But, wait a moment. The drugs I’m on tend to mess up my balance so that I am far more likely to fall under a passing bus than the average person. Buses are downright dangerous but, let’s face it, it’s the cancer that would be the real cause.

“You could have a heart attack.”

Well, yes, that’s a natural born killer for men. But have you seen how both cancer and the medications you take for it increase your risk of having a fatal heart attack. The death certificate may say it was a heart attack but it was really the cancer.

“You could die of overweight”.

True, and I am carrying more weight than I did. But it’s the cancer medications that have put weight on me, all down the front in unaccustomed places. It’s actually cancer that’s caused the weight problem.

“You’ll just die of old age”.

Yeah, er Nah. What is old age except the failure of systems because something has gone wrong with them? It’s called “natural causes” but in my case actually cancer is a natural cause and should take the blame.

“You might die in prison after being convicted of murder”.

Yep, that could happen. But it would probably be because I beat up some naïve nay-sayer who was trying to tell me that that I wasn’t going to die of prostate cancer.

Actually, there could be another way I could die. It would still be a prostate cancer death. But it would probably be called something like Physician Assisted Death. After saying goodbye to family and friends, I could receive a simple injection and become unconscious in moments and dead in minutes. If I have to face the choice between inevitable death from a long drawn out process involving suffering and unbearable pain or a simple injection to end it all, I think that’s what I would do. I think that’s what many people would like to do. Right now, we don't have the choice. 

That’s why we need to send submissions to the Parliamentary Health Committee to recommend a change in the law. Please, let us have the CHOICE.

Matt Vickers, husband of Lecretia Seales, has just loaded a very moving video appeal onto Facebook.  I am not a Facebook kind of person, but I have viewed the short piece and have written again to the people who took a look at my draft submission a few days ago.

This is what I've just said in this letter:

With my PSA doubling time over the last ten months being 3.8 months, this issue is becoming a very personal thing for me. It’s no longer just a matter of something I see as being important for everyone else in a mature society. I could well be painfully affected by Parliamentary failure of nerve and the lamentable lack of positive support for change. I encourage you to take some time to write something of your own thoughts or put your name to someone else’s submission. This is not a time for hanging back and figuring it will all work out OK in the end. This process does not work like that.  A full explanation of the procedure for making a submission is set out here:  http://lecretia.org/you-can-help/  

Matt's video can be seen here: do take time to check it out.

https://www.facebook.com/lecretiaschoice/videos/vb.1633927736827211/1726232860930031/?type=2&theater 

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.

Delayed Abiraterone and a Bump on the Floor

29 Sept
I had the first of the monthly PSA tests last week. Not quite a month, but near enough, and the results today show the smallest increase ever over any previous reading. My doubling rate since March is now moving back out to 3.6 months. Still pretty serious, but a lot more relaxing than the two month rate reported three weeks ago (below).

PSA readings normally bounce around a bit, but this is a remarkable slowdown - the rollercoaster of prostate cancer... Meantime we're getting on with life and enjoying the ride, the village and the singing. Oh, yes, especially the singing; our quartet is accomplishing things we thought quite beyond us...


9 Sept
Yesterday's appointment reviewed my history (not to mention my views!) and we agreed that until I exhibited clear signs of the cancer, it would be inappropriate to commence Abiraterone.

Although my PSA doubling time for the past five months has been around two months - pretty high - we are going to watch it month by month and look for other clear symptoms of the cancer. So, technically, I am still classed as Castrate-Resistant but Unsymptomatic. That's not at all uncomfortable for me and, as usual, Bev and I are getting on with life.

After that, "getting on with life" meant popping into another hospital on the way home, to call on a Village friend who's had surgery. It was very hot in the ward - I thought it was just me having a hot flush! We'd been standing talking for some time when Bev tried to comment to me about the heat and then collapsed onto the floor with a huge bang.

Now,  there are advantages with collapsing in hospital. A dozen people were there in a moment and she was scooped up onto a chair and then onto a mobile bed and whisked off to Emergency. By then she was fine, thanks very much.

But then the "Protocol" clicked into place.  She was written up on three sets of forms, wired up in a dozen places, given her very own national health information number (for the first time), given all kinds of tests and scans by various initials. Finally, with no obvious problems in sight, and after some pushing on her part, she was allowed to go home. She's a bit sore here and there but is otherwise fine, for which we're both very grateful. But it was a long, long day...

So, back to the routine and the ordinary...

The shape of Sunday worship

Our local church is a hexagonal shape with flat floor, carpet and chairs. It lends itself to all kinds of arrangement for different kinds of services.

With more or less movable furniture this imaginative building was designed to reflect a whole lot of different ways of being church. For instance, it could be a "people" kind of church where worshippers could see a little more than the backs of people's heads in front of them. Or perhaps a "participatory" kind of church where contributions could be made and seen and heard from some other place than up front, concert style. Or maybe a "gathered" church where the congregation could be seated around the (hexagonal!) communion table for the fellowship meal. The possibilities are limited only by our imagination.

And there's the problem.  In more than two decades of occasional visits and eighteen months of fairly regular attendance I have never seen it arranged in any other manner than what I would call "railway carriage" style. Rows and rows of chairs, all facing the same way towards a table that is always against the same wall.

Somewhere, sometime, a vision for this sanctuary was lost. And now, just to make absolutely sure of our fundamentalist understanding of worship and its setting, I have just found on the wall a diagram showing us exactly how the chairs should be rigidly laid out to marks in the carpet! I suppose some committee put a lot of work into this to save things being a little untidy on Sunday mornings.

I'd have preferred a bit more untidy and a lot less rigidity...

Failure in UNlearning

For years I have edited video in Pinnacle Studio, graduating to version 11+. That was fine until I changed my computer out of Windows XP. Studio would not run in Windows 7. So after a lot of thought I ordered up the latest version of Studio, v18. It looked like a big step up but it was much bigger than I anticipated. The entire interface had been changed. Everything was different. Nothing was where I expected to find it. I even didn't know what things to look for, never mind where to find them. Eventually I gave up the whole thing as a bad job.

It was not just a matter of learning a whole lot of new stuff; I had to UNlearn all the things I had been used to for years. It was the UNlearning that defeated me.

A lot of Christians are in the same position. Sometimes it is not so hard to learn new stuff about the faith as it is to give up what we thought was fine - half a century ago...

A Gospel Quadrilateral

I did the "Gospel" presentation (see Sept 14th) to the Methodist Supernumeraries this week under four headings:

• Pain - This is usually what we feel when something is wrong with us... And at our age, that's pretty common with people here in the Village. "How are you?" is not always just a formal greeting but an opportunity for real sharing about real issues. This can be linked to the feeling that we  sometimes have about Creation and what we are doing to the environment. There's an awareness of something not quite right, of failure, of dis-integration. 
• Balance - Yet it's a "Gospel" issue that we do not need to be totally dominated by pain. We can get over some of our dis-ease.  We do not have to become totally absorbed in it but can experience all aspects of living and dying in a balanced way. The natural environment, too, if left alone, seems to have the capacity to re-create itself. 
• Knowing - It's interesting that Jesus didn't gather "members". He gathered "disciples", learners, seekers after truth. Some people around me these days are highly motivated to consider living and dying in the context of truth rather than myth. They seem to experience as "good news" some of my beliefs that are at odds with traditional Christian doctrine. They are more responsive to a belief system which is consistent with what they have learned rather than one which demands that they set aside their beliefs for uncritical "faith".
• Growing - I have drawn to Chris Scott's interpretation of Matthew's Jesus, "Unless you become as little children"(See Sept 14).  Scott suggests that the significant quality of children is the capacity to UNlearn - thus all waterbirds are "ducks"  until the child UNlearns that certain "ducks" are actually swans. This ability to UNlearn seems to be what hinders people inside and outside the church. For growth toward the ultimate maturity - "self-actualisation", for instance - invites Unlearning. Unchurched people around me sometimes find that it is Good News to be able to discard some things they were once taught were ultimate truth.

Looking at my modest Gospel Quadrilateral" I find some parallels with John Wesley's summary of Methodist theology. 

• All people need to be saved - sin
• All people can be saved - salvation
• All people can know that they are saved - Christian assurance
• All people may be saved to the uttermost - Christian perfection

These days I wouldn't attempt to share my convictions around these terms as Wesley used them. But perhaps they have shaped my own theology of the Good News more than I thought! Maybe I still have some unlearning to do!

A Visit "Home" and the Gospel

We have just had another great weekend away, enjoying some remarkable back roads around mid-Northland and delighting in the community and congregation which has been so much a part of our lives in the last quarter-century. We visited 20 Tui Grove and shared the excited plans of the new owners who have great hopes for major development of the house and the lovely property. They have the same feel for the bush and the view that we had...

On Sunday morning the strengths of the small church were clearly evident in the way people cared for each other, noticed absences, gave hospitality to a couple of other visitors and shared together for a long time after the service. This particular congregation has always been open to new ideas and it was really stimulating to develop a somewhat provocative interpretation of Matthew 18:3. It received only the most enthusiastic reception, even from people I might have expected to be a little resistant to my views. I would hesitate to use that sermon if I were asked to take another service our local church here at Red Beach.

Next Thursday I am to talk for five minutes about "My Gospel". Three of us are going to do this in the context of a two-monthly gathering of retired Methodist Presbyters -- a daunting audience. And of course the idea of "my" Gospel is a bit uncomfortable. But I understand the group is simply wanting to know how I interpret the Good News of Jesus in today's context. That will be interesting. Maybe I will go back to Sunday's Mt 18 and "the child in the midst", so significantly interpreted by Chris Scott in his book "Goodbye to God - A Search for a Human Spirituality"...

But any inner stirring to find new ways of offering a theoretical Good News to people in today's world pales in comparison with the urgent human need that is surfacing so dramatically in the thousands of people on the march in Europe. And the anti-refugee, anti Muslim, anti-immigrant sentiment that is swilling around the sewers of social media in this country sickens the soul.

Maybe we retired clergy should take up an offering for refugee rehabilitation rather than just "discuss" the Good News on Thursday...

The Debate Must Go On

The Parliamentary Select Committee on Health has released the terms of reference for its hearing of the issues around End of Life Choice. Submissions close in February 2016.

On the one hand, that gives everyone plenty of time to prepare statements. On the other, it moves the whole process further away in a distant future.

Furthermore, no Government has to take notice of a Select Committee. The matter will be investigated and a report produced. And that could be where it all ends. Both of the major political parties are aware that at least 30% of the country's voters do not yet support changing the law. There is too much to lose for the politicians on both sides to be enthusiastic about a debate that comes down to an actual vote on whether or not Physician Assisted Death will become a reality.

An promising feature is that the terms of reference state the Committee is to "fully understand public attitudes". A significant shift in reported public attitudes could well be prompted by publicity attached to the Select Committee submissions process. So a vigorous debate needs to continue now. Supporters of End of Life Choice must not leave the debate to the Committee. And they need to enlighten this debate by personal experiences. Some of us who have terminal cancer have to allow our stories to become public property. 

Tomorrow, Bev and I sit down again with our Oncologist and discuss the option of a fairly new chemotherapy, Abiraterone, and its vague promise of an "average of 4.6 extra months" of life.

It doesn't sound like much of an option. But, perhaps, if I am currently good for two or three years and Abiraterone could push that out a further, say, six or seven months, I could even be in the Parliamentary public gallery when the law is changed.

Sooner or later, with or without my presence, it will be.

PAD and Progressive Christianity

At a birthday nibbles and drinks last night I got into conversation with yet another person nearer my age (we don't talk about "old people" around here!). She asked me, "How are you?" and, as usual, I answered.
Most people don't actually want to know. "Too much information," they say to themselves. But if you ask me that question I am likely to answer it. And last night we got quickly around to end of life and medical care issues. She is another advocate for what she calls "euthanasia". The topic is quite close to home around here. Yet you couldn't find a more active bunch of oldies doing stuff. A black and white formal dinner dance planned by the management for this Friday night has been cancelled for lack of registrations - but I hear that a bunch of us are organising an unofficial "bring a plate" BYO "knees-up" in the Village lounge instead and we'll probably enjoy it just as much as the official dine and dance. That's the spirit of our age...

Someone said we're living in "God's Waiting Room" around here. Well, that's not quite how I would put it but I know exactly that feeling. Nobody knows better than us that we do not know what the next day will bring. When you have a terminal illness you're so much more conscious of the impermance of life. But, heck, meanwhile there's a lot of living to be done. There's a sense of urgency about how you fit in all the things you'd like to do in a day. For the first time for years, I've been working on formatting no less than three books at once. I thought I'd given up publishing. I've got caught up in our Parish's review of its badly neglected giving programme and we're experiencing a very encouraging response that is pushing us to do even better things. And today some of us from the Village are squeezing in a trip to the movies half an hour away and then rushing back to Barbershop chorus practice just before dinner. Oh, it's all Go around here...

And at the end....  What I hope for is something like this definition of PAD that I received in an email today:

There is a type of Physician Assisted Death where, at the request of the patient, the physician prescribes the drug, and the patient takes it to end their life. This is often called ‘physician assisted suicide’.  This type of PAD is beneficial to the patient, prevents suffering, is a compassionate act from the doctor, can be regarded as an extension of treatment at End-of-Life, is respectful of the patient’s autonomy, and allows the relatives and friends to say goodbye before the ravages of disease and intense sedation make this impossible. It also allows some ceremony and spiritual and religious involvement.

Members of Parliament, hear me: 
I have terminal prostate cancer. I am likely to refuse further medication next Tuesday. 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!

Family Budgeting

With all the interesting things to do around here, the book on family budgeting is moving along only slowly.  But it is a moving experience to enter into the lives of those who half a century ago had a vision of a country in which fewer households would suffer because of their inability to manage the financial affairs.

I am writing today of a public servant who conspired to change the way his department worked to help people into getting their own homes. I have discovered that an imaginative and sweeping proposal to assist Maori people into a better quality of life was back-burnered by one Minister of the Crown because it might become an election issue. 

But, wait, there was a change of government. The new Minister not only put the report back on the heat but appointed the report chair as acting secretary of the department. And a key person in the same department caught the vision and travelled widely around the country promoting a system of voluntary family budgeting advisors that altered the household budgeting landscape.

My own involvement in the decade from 1978 gave me huge experience in the area. I knew of the two men who dreamed up a scheme that caught the imagination of the country. But I was never enlightened about those who spread this extraordinary voluntary movement throughout fifty centres in just three or fours years. It is a privilege to be trying to put together their story...

Flag it!

The Change the Flag debate is fascinating. With many others, I am outraged at the $27m budget for the cost of discussing the flag. The flag may well be outdated and inappropriate but I suspect the allocation of that kind of money - not to mention the manipulative structure of the process - is just part of a ploy to exhaust us all with the possibilities so that nothing is eventually changed.

And I am whimsically touched that a throw-away remark from the Leader of the Opposition that we might just as well replace the NZ national anthem has launched a public discussion that has no budget but is already consuming more oxygen than the official flag debate.

I am absolutely with those who say that the anthem reflects a Victorian understanding of God and nation. But I am appalled that those critics seem to assume that all of today's Christians still promote that kind of thinking. Several times in this blog I have advocated junking the ridiculous anachronisms around the daily prayer in Parliament, saying grace on public occasions, a lot of Anzac Day liturgy, and, yes, absolutely, the national anthem.

Besides these real issues of our understanding of ourselves, and our capacity to express that understanding in appropriate and creative rituals, the flag debate is a bit of a sideshow.

More ups and downs of PSA doubling times

Today's appointment at Medical Oncology, at my suggestion, has been postponed. There being - unprecedentedly! - no significant change in my PSA for the last month, there wouldn't have been much to talk about. Up or down, another month may give us a better picture.

But I appreciate that doubling in the last three months is still a pretty steep increase. Not as steep as the two months of June/July, but still steep. So I am probably just delaying the inevitable. The white-coated ones really would like me to accept the government's offer of their fancy new drug. All my friends say "Of course you should do it." Even my very sympathetic GP, when discussing the prospect of 4.6 extra months of life in exchange for lowered quality of life from the drugs, wondered out loud:  "Well, you never know; a cure might be found in that 4.6 months!".  Now that's clutching at straws....

Right now my quality of life is very good and I am reluctant to submit it to the massive list of possible side effects of a very heavy drug regime in the hope of squeezing out a few more months at the end.

Ups and Downs of PSADT

My PSA doubling time rocked up to two months for the last three monthly readings but, last Friday, it went down to zero for the month. Quarterly trends are no doubt more reliable than one- month checks. But this is a big downwards shift for which we are all pretty grateful around here.

And, while I'm on-line, the Vol Euthansia Society has just sent me this link to a marvellous parody of the Eminem and Rhianna number Love the Way you Lie by Zdoggmd. It's called Ain't the Way to Die, and - if you can just follow the words - picks up on so many of the issues around end of life choice. A wonderful piece of work from an inspired medical team.

Oh, heck, here are the words for you. But do go and see the clip!

Based on “Love The Way You Lie” by Eminem and Rihanna

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s not right because this ain’t the way to die, ain’t the way to die
Patient:
I can’t tell you what I really want
You can only guess what it feels like
And right now it’s a steel knife in my windpipe
I can’t breathe but ya still fight ‘cause ya can fight
Long as the wrong’s done right—protocol’s tight
High off of drugs, try to sedate
I’m like a pincushion, I hate it, the more I suffer
I suffocate
And right before I’m about to die, you resuscitate me
You think you’ve saved me, and I hate it, wait…
Let me go, I’m leaving you—no I ain’t
Tube is out, you put it right back, here we go again
It’s so insane, ’cause though you think it’s good, I’m so in pain
I’m more machine than man now, I’m Anakin
But no advanced directive, I feel so ashamed
And, crap, who’s that nurse? I don’t even know her name
You lay hands on me, to prolong my life again
I guess you must think that this is livin’…
Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die
Doctor:
You ever love somebody so much, you can barely see when you with ‘em
That they, lay sick and dying but you just don’t wanna let ‘em
Be at peace cause you miss ‘em already and they ain’t gone
Beep beep, the ventilator alarms
I swore I’d never harm ‘em, never do nothing to hurt ‘em
Hippocratic oath primum non nocere now I’m forced just to torture ‘em
They push full code, no one knows what his wishes were
His sister heard him say once, “I don’t wanna be a vegetable”
But no one agrees in the family, his caregiver Kate
Wants him comfort care but Aunt Claire lives so far away
That her guilt eats her like cancer
So she answers, “Wait! I think he’ll wake”
Maam, you ain’t even in the state!
Palliate, relieve pain, get him home, explain
Critical care? Just hypocritical when it’s so insane
But they insist I shock his heart again so I persist
Guess that’s why they say that love is pain.

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die
The way that I should die

Cancer a good death?

Dr Richard Smith's view of death by cancer really appeals to me. The former editor of the British Medical Journal is quoted as saying terminal cancer is the best death because you can....
"...say goodbye, reflect on your life, leave last messages, perhaps visit special places for a last time, listen to favourite pieces of music, read loved poems, and prepare, according to your beliefs, to meet your maker or enjoy eternal oblivion,"

He accepts that this is a
"... a romantic view of dying, but it is achievable with love, morphine, and whisky. But stay away from overambitious oncologists, and let's stop wasting billions trying to cure cancer, potentially leaving us to die a much more horrible death."

Thank you, Dr Smith. I'll have that on my mind as we debate the benefits of going on Abiraterone and Prednisone with our oncologist next Tuesday... But I'm doing a lot of more interesting stuff than "last things" at the moment... And, when that time comes, as a card-carrying Methodist, I will have to think about the whisky... Maybe, like lots of other things, that doesn't matter any more!

Another Committee - but great news!

I've just been emailed with the news that the Parliamentary Health Select Committee met today and has agreed to set up an inquiry to fully investigate the matters raised by the petition on end of life choice.

Hon Maryan Street's (and nearly 9000 others') petition asks that the committee “investigate fully public attitudes towards the introduction of legislation which would permit medically-assisted dying in the event of a terminal illness or an irreversible condition which makes life unbearable”. Health Committee chair Simon O’Connor has said today, “I would like to see a thorough investigation that covers as many aspects of this topic as possible in a responsible and robust manner.”

That is a great outcome, indeed the very best that could be hoped for, given the intransigence of most of our Parliamentarians on this issue. As one for whom a changed approach to the subject may have a very personal relevance some time in the not too distant future, I am really pleased that we have at least moved forward to this extent.

Busy days

It's been a busy time since my last post.

The Family Budgeting book is moving along reasonably well with something approaching a first draft getting towards 120 pages. It's absolutely fascinating what is turning up in the sparse records. I dare not count the number of volunteers who broke down under the sheer weight of demand through the years I am reviewing. I know of at least three personally, but in almost every town in the country there's a story of huge effort in the face of ever-increasing demand.

The huge input of government assistance has created a model that is so different from what we used to do in the 1960s and 1970s that the story really needs to be told. As the last "steam budgeter" with any knowledge of the national scene, I feel some responsibility to get it done - in spite of my commitment to myself a couple of years ago not to start any large project that I could not finish well before my "best before" date. So it's good to see it coming together.

However, the book has had to compete with quite a few other things.

We made a grand trip down to Hutt Valley, driving through some of the least-known main routes through the north island. I'd never done the Waitaanga route and we really enjoyed another run down the Forgotten Highway to Stratford where our motel provided the best view ever of Mt Taranaki.

I attended the weekend National Training Seminar for Community Patrol and then we had three or four days with the wonder Great Grand Kid, Cohen David and his parents. Saw his first dip in the local warm swimming baths. And guess who got to give him his first solid food - at four months... We had such a time with them... Another night in Upper Hutt with Bev's nephew Vaughan and Cushla and we were back up country in time for a last-minute chorus rehearsal. The ten days left us pretty whacked - but it was a terrific time of touring, family and singing.

Our Barbershop Chorus did pretty well at our own village's concert last weekend, together with a visit from the choir of Pinesong Village where we sang at their concert a couple of weeks earlier. And our men's quartet put on two pretty good numbers, our encore was musically pretty awful but it scored high on entertainment! We are having such a great time doing it.  It's back to rehearsal this afternoon for both groups.

Since then I've been heavily involved in helping the local parish address a running deficit of $2000 a month. It seems they spent $100,000 of reserves in the previous couple of years but were actually living on the same reserves for routine expenses. All reserves will be gone in December, so they are trying to do some kind of review of giving. They've had no stewardship education programme in place for at least 15 years so far as anyone can remember. Our congregation consists almost entirely of people who have been here less than four or so years and there's no "memory" of serious commitment through regular giving. Nor do most people have the slightest clue about the costs of keeping a church there in case they want to roll up now and then. The parish is in a growing area and is not declining. Indeed, a membership review last month produced an increase of nearly 30%. But we will not survive with the equivalent of a fulltime minister if the parish can't lift its giving. I've been asked to assist. But helping to raise commitment to pay for stipendiary ministry and property goes against most of my mission strategy principles. Of course, this isn't really a small parish so Local Shared Ministry is not an option. It's an unaccustomed situation in which to find myself.

Meanwhile, my fitness is pretty good. I've not had any major falls but, like a few of my age, have a bit of vertigo now and then. And my walk isn't as firm as it was. I guess the spine is probably feeling the pinch down around L4! We'll be watching that from now on, I should think. Especially if the PSA doubling time stays up around two months.

Now I am trying to put together a service for Sunday. Only my second in eighteen months here so I can't complain about having too many, I guess...