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!