Tuesday, December 23, 2014

Another funeral

It must be the season for funerals. Recently, I attended a great one. Recently, I was at another that was by my criteria, pretty bad. The contrast was very interesting.
This one was conducted not by a clergy person, nor a contracted celebrant but by the funeral director. Apparently not trained as a celebrant, he seemed to function merely as a master of ceremonies for a series of laudatory speeches, prepared and unprepared, and the simplest of committals before we adjourned for refreshments in the adjacent lounge. He was clearly trying to accede to the departed's request that the occasion be a "happy" one. Curiously, this painstakingly "secular" event included two hymns of significant Christian sentiments, but of stark irrelevance in such ceremonial as was attempted and somewhat beyond the ability of the fairly large audience to sing with any conviction or, indeed, sing at all.

Half a century years after reading Paul Irion's The Funeral and the Mourners, I have been asking myself what I expect of a funeral celebration. Off the top of my head, and in no particular order, I think the funeral needs to tackle a number of objectives.
The Funeral
1.  - must acknowledge the reality of fact of death. The other day this happened only by implication: there was a closed casket present.
2.  - should acknowledge and "celebrate" the huge gap that this death will make in the lives of all present. I have always made this a completely separate segment of the funeral service, not an incidental reference along the way.
3.  - should "celebrate: the life of the person concerned meaningfully and, if appropriate, with humour. We seem to get plenty of this these days.
4.  - should set the stage for the grief work that needs to be done, to some degree, by everyone present and should at least hint at personal resources that may be needed for this...
5.  - should offer some reflection on the meaning of living and dying. Many people arrive at a funeral with questions. Pious mumbo-jumbo from well-meaning Christian clergy is out of place in today's largely secular society. But so is an evasive silence. A celebrant should have the ability and the passion to at least articulate the questions if not also some personal suggestions as to the answers.
6.  - should offer an opportunity for a significant and final parting with the casket... A family group meeting later at the crematorium may not be adequate for all present at the celebration itself... 

I have prepared a series of statements on my personal end-of-life-choices relating to medical and other personal matters. But I have not prepared any directions for my funeral. The funeral may be about the deceased but it is for the mourners. I hope they will be able to work through their needs with a sympathetic celebrant and - at this stage! - I am happy to leave it to them. Perhaps they will have read this post...

Monday, December 22, 2014

Te Harinui

With the 200th anniversary of the arrival of the first white settlers, and the first proclamation of the Christian Gospel in New Zealand, Willow Macky's Te Harinui is a shoe-in for the Christmas service Bev and I are leading next Sunday at Paihia.  

I am not a pedant about pronunciation but I will once more try to encourage the congregation to sing the hymn title correctly. Many people, without thinking, sing Te Haranui... So what's the difference, I wondered just now. Does it really matter?

A quick look at a Maori dictionary suggests that it does matter:  As a noun, Haranui would be "the great  sin, foul, crime, offence, transgression, wrongdoing, gaffe, infringement, fault, problem", etc.  Not quite in the spirit of,  "Behold I bring glad tidings of great joy"

Yes, I will once more remind people that we sing Te Harinui, The Great Joy...

Wednesday, December 17, 2014

Sixteen hours of misery


I don’t want to diminish the agony and anxiety of those who were locked up in Sydney’s Lindt Café for the other day. It was a terrible day for them and for so many who were affected by one sad, mad man’s actions and threats.

The immediate outpouring of floral tributes at Martin Place testifies to the widespread empathy of the Australian public for the victims of the crime. The horror of the situation has been felt by vast numbers. The moving hashtag #illwalkwithyou has been picked by people all over the world who want to work against any possible racial and ethnic hatred. 

So it is appropriate that NZ should “review” the anti-terrorism laws it has only just recently rushed through the parliamentary process. Perhaps there is more we can do to try to prevent random as well as carefully planned acts that can do so much damage. Parliament has a duty to our people to see that they are protected to the greatest possible extent from such catastrophies.

But it is a little ironic that we respond so dramatically to a 16 hour ordeal and two or three deaths when we still require hundreds of our dying citizens to suffer days, weeks or more of pain, indignity, frustration, loss of connection and quality of life because a well-drafted End of Life Choice bill may not get onto the parliamentary agenda.

The terminally ill do not get the kind of publicity given to the Lindt Café affair. Indeed, they don’t seek it. But they deserve at least the opportunity for the issue to be discussed in parliament. 

Tuesday, December 16, 2014

A big medical week

16 Dec
Yesterday the last in the current series of consultations confirmed the findings of last week's visits. I had the skin on my back checked for damage from the radiation. There were sensitivity, strength and capability tests around my legs and feet. With the lowered PSA, all the signs are that the cancer in my L5 vertebra has not put significant pressure on my spinal column.

We will no doubt be watching my regular PSA tests for indications of resurgence of my Gleason Grade 7 cancer. And if further radiation treatment seems to be required, we would prefer not to do that within a year. So, hopefully, I have a kind of warrant of fitness for a comfortable and medical-incident-free 2015. That's an outcome we didn't anticipate a year ago.

Thank you, Aragon and all the diagnostic benefits given to me In June and July while I was being considered for the for the ARN 509 Trial through North Shore Hospital. And Astra-Zeneca for quarterly implants of Zoladex. And the amazing NZ health care system which has spent an inordinate amount of money on this near-octogenarian over the last ten or twelve years. That's a lot to live up to, I guess. But I'm getting on with it. Life is so good.

11 Dec
Two consultations today… Ninety minutes’ drive into the city to meet again with the charming and ever-enthusiastic Frith (See 18 Sept). She was just back from an international prostate cancer experts’ junket in Portugal where there’s been interesting news of another drug trial with encouraging outcomes for men who receive chemo as the very first therapy after diagnosis. Well, that opportunity passed for me a dozen years ago.

But the good news is that the drop in my PSA during the last three months suggests that we will do nothing for another quarter. I am all in favour of doing as little as possible. We had a droll conversation about whether I should invest in much-needed glasses? (“Definitely!”), Do a $500 upgrade my video editing program? (“Why not?”) and go on a cruise? (“Well, perhaps not if you are going to take a couple of years to save up for it”). I forgot to ask about hearing aids and my ropey left knee prosthesis which is creaking ominously… But that was all pretty encouraging.

And so off to do a bit of windowshopping to fill in some time before Urology in the early afternoon at North Shore. I had nothing to complain of so there was nothing much to do there, either. We had another pleasant chat, collected a routine prescription or three, and said a final Goodbye. I won’t need to return there until, Madhu hinted a little mysteriously, I need a “bit of a plumbing job later on”. H’m… Well, if Frith is right, that won’t be for a while yet.

Considering the fairly vigorous nature of my cancer, and the absolutely regular rate of increase of my PSA for several years until October, that’s all a pretty good outcome. But we will still keep Monday’s appointment with Radiation Oncology…

8 Dec
I haven't started on this week of interviews yet but I have just now obtained my latest PSA result. It is about one-third down on the last quarterly one. 
Up until last June my PSA had been rising steadily at more than 50% increase per quarter for several years, and that's largely what prompted our move to the Village. So this is a significant trend, especially considering that we gave up bicalutamide nearly three months ago. It would seem that the targeted radiation on my spine has done some good.
I guess the discussions in the next few days will focus on whether we should start up an equivalent for the discarded bicalutamide. And no doubt some other options will be considered. But, all in all, if nothing else is done, this is an encouraging sign. It's some justification for all the time and professional skill and support lavished on us this year.

6 Dec
The other day I had my three-monthly Zoladex implant. That must be about the 40th I’ve had since embarking on my prostate cancer journey. They cost several hundred dollars each so my bonus of extended life has come at some cost to the NZ taxpayer.
I also contributed more blood for a quarterly PSA test and some other tests which are going to be of interest this coming week. For I have appointments with three difference specialties in the next few days, each of them involving traveling into Auckland and traipsing all over the place trying to find the right offices. At least, with a bit of cajoling of the ever-sympathetic booking clerks, I have managed to get two of them on the same day – even if in different parts of the metro area.
So we will listen to the words of wisdom from another half-dozen people this week and, no doubt, have to make more decisions as to where we go with this journey from this point.

We have made one decision, pretty much unrelated. In January we are going on a two-week cruise around the bottom of New Zealand and across to Australia where we will have a further few days with family. 
Meanwhile, we are enjoying our Barbershop Chorus as we sing our way through gig after gig in our Village community and local venues. One touching moment was for our male quartet to make a hospital call on a former member who is coming to the end of a cancer journey. I’d never met him before but I naturally felt a poignant affinity with him. It was great to be able to see him perk up as he tried to sing "Riverside" along with us.
Perhaps the rest of the quartet will come and do that for me some time. How will I handle that, I wonder? I hope I can give them back as much as Ron did yesterday.

Monday, December 15, 2014

End of Life Choice? - What choice?

Ian Lees-Galloway
So Labour Leader Andrew Little has "told" Ian Lees-Galloway that he is not to put his private member's End of Life Choice bill back into the parliamentary Ballot Box.

I was not unsympathetic to the decision made that the EOLC bill be withdrawn last year so that it did not become an election issue. That was understandable - to a degree. But I am now deeply disappointed that the party leader who is trying to convince the electorate that Labour is still "socially progressive" is not able to at least permit one of his members to give the draft bill a chance of gaining legislaters' attention.

It is reasonable that a private member's bill be given a certain amount of scrutiny by a party leader before the individual takes the plunge. It is understandable that promoting such a bill will draw off some of the energies of the member concerned. But the airy dismissal of this issue as a controversy that does not warrant consideration "at this time" because of Labour's political predicaments is frustrating for two reasons.

The EOLC Bill is already favoured in some form or other in opinion polls. And a huge amount of promotional work has been done and will continue to be done using energies outside of Mr Lees-Galloway's own resources. If the bill is put back into the ballot, and is actually drawn, there is no doubt that the issue will at least receive serious consideration.
Andrew Little apparently stated (disparagingly?) that this "stuff on euthanasia" is not timely for a progressive party.

In what I interpret as a dismissive and ill-considered decision I think he has made a profound misjudgment of both the issue and the mood of the electorate. Both deserve better from an aspiring Prime Minister. I suggest that the test for him now is whether or not he is able to reconsider this unfortunate and inappropriate decision.

Sunday, December 14, 2014

The Christmas Story – “Once Upon a Time...... Lived Happily Ever After”

I had to cross my fingers behind my back a good deal in church this morning as we sang our way through the traditional Christmas carols. They are so full of concepts that are simply not true for me. My integrity is challenged in singing them. But I like singing, so perhaps crossing my fingers behind my back makes it OK to sing them. 

Of course it was mainly for the children that we acted out yet again the Christmas stories. Today’s service was entertainingly devised with symbolic Christmas presents brought forward for each element of the service. There was a lot of involvement of the congregation. Our curiosity was aroused as each parcel was unwrapped. And there were some whole-hearted laughs: after all, introducing the “Quirinius census” with an Inland Revenue Tax Return form was good for more than a bit of a giggle. And I can tell you the whole thing was a lot better than our recent Village Christmas service themed around a Partridge in a Pear Tree.

It’s OK to tell children stories that the adults understand are not “true”. There are usually elements of fantasy that are clues to help adults recognise fact from fiction. People can put imaginary quotation marks around these clues. But in the Christian stories the elements of fantasy or impossibility aren’t seen in that way by most people. Because they are found in the Bible, they seem to have become tests of our faith. Their acceptance has become a measure of our orthodoxy. No matter how improbable, unhistoric, or theologically unacceptable they seem, the fantasy elements of the Christian story have taken over the story.

I have no problem with re-presenting the story for the children at Christmas. But, let it be story. And when there are adults present let us be open and clear about what is most likely to be mythic. Maybe all we needed for the thinkers in the congregation this morning were one or two simple phrases. We could have been told that, "Of course, not all of us believe all these things actually took place like this..." or "We’re telling a story that was created by simpler minds in a world of different truth… and so on".

Such comment was not there today. For me, the story didn't end with living "happily ever after..." But perhaps I was the only person in 50 who felt a bit alienated because of it…  Also, what shall I say in ten days when I am invited to conduct the Christmas service in our former parish? How will I re-tell the story? 

Wednesday, December 10, 2014

A Good Funeral

I don’t go to many funerals these days —my cancer medication makes me excessively tearful and that is not a good look when it doesn’t reflect genuine emotion at a funeral—but yesterday we attended one that gladdened my heart.
Of course the occasion was imbued with the Christian faith of the lady and her contemporaries. The things read and sung were her choice and well chosen. But, in these days of lengthy funeral contributions from all manner of relations and friends and even ordinary attention-seekers, what struck me was that her adult children declined to offer their individual spoken thoughts. 

Rather, they crafted a comprehensive written tribute which was read by the celebrant just as they wrote it. It was lucidly informative and touchingly intimate. The only other contributions, prepared carefully by a family member and her congregation were significantly distinctive and memorable. Her life was adequately and beautifully reflected in this celebratory part of the funeral service.

Then, after something like a committal, the celebrant turned to the family and spoke specifically to their need to deal with the gap left in their lives. They would, he said, be moving through “deep waters”. He urged them to “take it easy” and suggested that grieving may be expressed in love. But he warned that anger might be expected and would be best met with compassion and understanding. He seemed to be urging them to be accepting of their different levels and timing of acceptance of their loss. Caring for each other they could “allow loving to heal” them.

I wish that I could recall all the significant phrases that lit up this short section to the service. But whatever they were, there was communicated a profound awareness of the reality that seems to be so often missing in funeral celebrations: someone has died and a great hole is left in the lives of the bereaved. A good funeral can set the stage in which that huge loss can begin to be explored and dealt with. And the celebrant can then genuinely give an assurance that “One day, you will think and talk about your loved one without pain.” Any funeral celebration should include this dimension.

Thank you, Russell; it was well done.

Friday, November 28, 2014

What, no Conference Video?

The NZ Methodist Conference apparently entered a new age this month with the use of large screen images of the ordination service so that everyone could see what was going on in the very large venue.  It obviously made a good impression. But, we have been told today, nobody ran the final program mix into any kind of video recorder, so there is no archive copy of the event.

Back in 1986, when "prosumer video" was an unknown term, the Video Connexion Volunteers produced a three-camera, field-produced record of all the major events of the Conference. Not only that, but they handed out ten-minute professionally-edited videos for members to buy as they left the venue.  Many people used these for their "back-home" reports in church the following Sunday. In 1990, this report video was recognised as an international first for religious communication.

The Administration Division contributed the cost of transporting the equipment for a few Conferences. It amounted to a generous subsidy for each video purchased at $15. But when that assistance was no longer forthcoming the volunteers were not able to meet that cost as well as provide their time and skills. So the Conference video programme died.

The Church has a Communications Endowment, conceived by the outgoing Prince Albert College Trustees to develop a national strategy for Connexional communications. An indirect product of three major Commissions on Communication in earlier decades - most of which foundered on the the question of where the money would come from! - the advent of this endowment has failed us in the area of audiovisuals and has not been over-generous in support of the church's newspaper. What was to be a Connexional resource continues to be frittered away on parish projects like hymnbooks, computers and projectors.

And in the technology-rich environment of Conference a few days ago, we apparently had no strategy for how to get the best out of it. How could that have happened?

Saturday, November 22, 2014

Methodist Conference in Changing Times

The NZ Methodist Liberal Society is thinking through what its members saw of the 2014 national Conference just concluded. Some are uncomfortable with the ebullient presence of Pasifika members whose passion and commitment is so evident in the on-line photos. This, together with the failing mission and increasing age of the dwindling Papalagi congregations is radically changing the theological and ethnic balance of the Church’s makeup. 

This change is particularly reflected in the Conference, but it has not been so noticeable everywhere, of course. In the Far North where I have been for 23 years there are relatively few Pasifika people. The Methodist Church’s impact after 40 years of ecumenical administration has been only by way of over-bearing, insensitive and ill-considered decision-making. 

Naturally, the denomination is not what it was when some of us became involved. It is OK for us to feel a little nostalgic about that. But we should be grateful that we don’t have the endless debates where only a handful of persuasive speakers dominated the rostrum, that Maori have been given long-overdue recognition, that other ethnic groups and their vigorous church life are much better served, that social issues have resulted in practical outcomes over a sustained period, that sometimes business doesn’t totally dominate our national get-together.

We who feel the impact of a denomination with which we are no longer familiar might also be grateful that the old-timers who were scared stiff about what some of us young up-starts were doing with “their” church in the 1970s did not drag us all back into a past that they were more comfortable with.

However, at the end of the day, Conference is not really what the Church is about. A little note that used to be above my desk when I was Fieldworker in Ministry for the denomination in the 1980s, said: If the Church isn’t local, it isn’t real

I think that’s still the challenge to any Conference.

Thursday, November 20, 2014

My Two Bits' Worth

Somewhere in my distant past life with Family Budgeting and general social services I entertained the concept of delivery of supplementary financial support via something like a present-day debit card. 

Anyone could apply for such a card and it would have the capacity to divert the cost of a specific percentage of any sale of certain items to the public purse. Each individual’s percentages would be related to their normal income and their tax rate as recorded by the IRD.

It could apply equally well to everyone from low-wage earners to full-time beneficiaries. The retailer would receive the full amount of payment and would not know how much of any sale was met by the state.  

A system of this kind could be much more flexible around the edges of bands of entitlement than supplementary assistance. It could also smooth the very difficult transition from benefit dependence into work. Indeed, if a political choice were made, it could easily limit the large amount of financial support given to some of us who do not have so great a need of it in our older age.

In the 1970s it was a pretty impossible strategy. The country couldn’t agree to personalised cards at all, even just for personal identification, and certainly not for delivering credit rather than cash. But the concept is not so unrealistic in these high-tech days.  The Community Services Card could probably provide a vehicle for the distribution of realistic financial assistance via credit rather than cash. 

I'll send that to the dreamers in Treasury ...

How to better fund our poor

It's interesting to note that Treasury is doing some "crowd sourcing"  for proposals to improve outcomes for those in need - as well as for taxpayers... An interesting idea, even if the time frame is pathetically short.

Did they get a nudge from minister Paula Bennett before he news release a few days ago? Or did she pick up a bit of political capital from being aware that they were exploring the issues?

At least the Treasury invitation seems to leave fewer questions answered before they are actually asked. And it is clear that interested people and groups may make submissions.  I hope that there will be a flood of creative and compassionate suggestions.

I guess a bottom line for me is that the basic level of benefits, reduced so dramatically over twenty years ago, is simply not adequate for the huge majority of those who depend on them these days.

Tuesday, November 11, 2014

Well done Mr Qain!

Store owner Kanmin Qain sought a relocation of a liquor licence for his Vege Oasis shop. Neither local officials nor the Police were inclined to object. 
But in the context of the large number of licences already active in South Auckland community members made strong submissions. Mr Qain listened to their stories of alcohol abuse and withdrew his application. He says the welfare of the community is more important than money in his pocket.

"As a businessman you have to make a contribution as well. It's not just about the money." He invites other businesses to follow suit.

The recent empowering of Community Boards to make representation on behalf of their communities could have worked better in this instance. But it is heartening that the applicant himself became more aware of the issues and took a bold and costly step on his own initiative. 

Well done...

Monday, November 10, 2014

Methodists "Face to Face"

When I was stepping out of a nine year term on the staff of the Theological College I declined to be available for a regular parish appointment. One reason was that having spent fifteen years working in alternative congregational life and ministry I was not willing to participate in what I called the conspiracy between congregations and their clergy to maintain the status quo. At its most crude, I considered this was that the “members would raise the funds and the presbyter would deliver ministry”…
My other hesitation was because of conviction that the “face to face” gathering recently brought into the Methodists stationing procedure was un-Methodist, un-discerning, unnecessarily stressful and generally not in the least helpful. I believed I should put myself in the hands of Conference and trust it to make a good match. The face to face procedure cut across what it meant for me to be in “Full Connexion” with the Conference.

The irony was that when I offered to pick up a part-time “supply” position I was put through the face to face process anyway. And it was pretty much what I expected and brought out only the huge difference in expectations between myself and many of the members. It set some of us up for differences that endured for the next two decades.

Yesterday we attended another face to face gathering - this time as members of the congregation. There was plenty of affirmation. But the most discerning questions could not be answered at this stage of negotiations. And the absence of any negative comments led the Chairperson to declare a consensus in favour. In this case, that was probably right. Though perhaps a lot of us were just ready to go home after a long morning in church.

A consensus that is achieved when the uncertain and the objectors remain silent is hardly a consensus. Even worse is a recent Presbyterian Assembly decision where, apparently,  the objectors left the chamber in protest and vote was taken without them.  

An unhappy hymn experience

I had a pretty uncomfortable experience with one hymn in church yesterday. In only four verses -
·       We affirmed God (or possibly Jesus) as “King” and “Captain”
·       We invited each other to “face the foe”
·       We discovered ourselves bought with the “lifeblood” of Jesus for his “diadem”
·       We acknowledged the “conflict” would be “fierce”
·       And the “foe” would be “strong”
·       (But, being  in “the King’s army”, we would win
·       Because “unchanging truth” would make sure of that)
·       We were “chosen to be soldiers” for “our Captain’s band”
·       But “grace divine” would keep us on the right side

And, to wrap it all up, an Amen was offered at the end of it

Between the words that are  meaningless to many people, the non-inclusive language, the theological concepts that spring out of an alien age and the triumphalist implications that Christians will always win out in the end, not to mention the pervasive militaristic theme that is offensive to the honour of those Christians who, at great cost, stood out against war, the entire hymn left little that I could sing with an easy conscience

Monday, November 3, 2014

Thirty Years On - St John's College Reunion

An all-day event was not high on my priorities after five days of targeted radiation. However, having made preparations for a"nana-nap" if necessary, we rolled up at St John’s College “Thirty Years On” student reunion.  They had left the college not long after we had arrived there as a separate denominational appointment with no formal role in the College.

The turn-out of about sixteen was not large and only three of us were Methodists. But Bev and I were warmly drawn into the group, many of whom had similarly befriended us in 1982 when we were grappling with a very unfamiliar situation. All kinds of links were brought to mind in sharing conversations. It was interesting to discover that Bev and I, just by being on site three decades ago, seemed to have made more of a contribution than we would have thought.

From a ministry formation point of view, it was illuminating that hardly a person in the reunion group was in a traditional parish ministry role. This was not a requirement for Anglican students at the time, of course. But it may have been because those who did have Sunday responsibilities last weekend were not able to take time off for a Saturday event.

However, it may also say something about the variety of vocations that has opened up to those who have ministry qualifications by education, formation or ordination. And it certainly continues to press the question I first researched for an MA Thesis fifty years ago: what is the "calling" of “the minister”? How do we define it? How do we select and prepare people to do it?

Wednesday, October 22, 2014

A New Criterion of Social Need?

I guess I'm as keen as the next taxpayer to get value in government spending. But Minister Paula Bennett's "wraparound" support for at-risk groups might be better expressed if it were prioritised around their need rather than what they might otherwise cost us.

The way her policy was reported this morning one gets the feeling that the priority is to direct priority spending towards people who are likely, if not helped out of their situation, to cost the state the most. People who, if somewhat neglected, won't cost us so much in the long term, are given lesser priority in social spending. So we will offer a person assistance if it will ultimately save us $246,000 rather than others who might cost us only $116,000.

The way the minister argues the case, it doesn't sound much better to me than the days when assistance would be given to the "deserving" poor rather than those who were just poor.

I know we have to impress the bean-counters, but let's focus on the magnitude of the need, not on what we can potentially save.

Monday, October 20, 2014

Our weekend in memory of Ewen Gilmour

Sixteen feature vehicles and support crews, 80 slightly (no, quite) crazy drivers and crews, 450 kms of winding Northland roads, five school visits, 2200 children with loot bags and handouts, six hamburger meals, and quite a lot of rain, all in one long weekend.
The Ewen Gilmour Memorial Mini Bash 2014 distributed grants to schools, built a path, repaired outdoor equipment, tried to injure TV personality Simon Dallow on a flying fox and did some landscaping and put in 300 plants at Moir’s Point Christian Camp… and, after expenses, cleared $14,500 for New Zealand kids.
The Cup Cake Car is one of the favourite vehicles of the Variety NZ “Bash”. Nobody was going to be driving it for the recent Mini Bash around Northland. Bev and I were invited to take it over at just a few days’ notice.
 They gave us a great welcome. TV celeb Simon Dallow made a point of acknowledging us in public at the opening school visit. In fact we won the award for Bribery and Corruption. This was for their competitiveness and unashamedly issuing infringement notices to other bashers as the self-appointed patrol officers of the Bash. We also raised $300 in an hour at Whangarei shaking buckets.
It's true that we missed one turn and got lost for quite a while one day. Next day we ran out of petrol and had to be refuelled by the RNZ Air Force support team. We’d been assured the car would do 220kms on a tank but I ran out at 132. There was a bit of talk about a heavy foot on the accelerator… But it was a great drive and I think I might take up rallying.
After visiting Red Beach School, where the special needs class now has a huge wheelchair swing thanks to Bashers, the entire convoy swung through our Residential Village with sirens and flashing lights and the works. People just loved it.
The NZ Variety Bash celebrates 25 years in 2015. In that time it will have contributed some $20 million to NZ children. It is the primary fundraiser for Variety which since the 1920s has drawn together actors and entertainers in fund-raising for children. Some vehicles have corporate sponsors, but most participants in the annual eight-day Bash spend the intervening months raising funds towards the entry fee of $7000 per vehicle. Everyone also pays their own share of costs for the trip. Some further funds are raised along the road with “bucket-shaking” and special efforts.
Variety began in the 1920s when a baby was found abandoned in an American theatre. Members of the cast contributed to secure her future and Variety was born. In NZ the organisation has always received huge support from celebrities in the entertainment industry.
The recent Mini Bash was dedicated to the memory of “Westie” entertainer Ewen Gilmour who died suddenly just before this event. Ewen had been much-loved for his wicked sense of humour and unfailing support of the Bash. His stretched limo was a feature this trip and will remain associated with BashNZ.
Variety is most commonly seen around NZ in the 120 Variety minibuses which have been given to NZ schools and other children’s organisations. 
The Cup Cake Car, owned by Paul and Robyn has become a favourite among the smallest vehicles on each Bash. We were very chuffed to be invited to have it for the weekend.

Tuesday, October 14, 2014

The Prostate Cancer Journey

16th Oct
Back into Auckland today to get another CT scan and to get fitted and tattooed (request for snakes was refused) for targeted radiation which is to start in a week's time. Nothing to it, they say. Well, we will hope for middle of the day appointments to avoid the commuter traffic...  

We now have the Bash Cup Cake Car and first thing tomorrow morning we're off for Wainui School and northern parts. You can probably follow us on www.bash.co.nz/Engine Block TV if Paul includes his parents in the occasional shot...

14th Oct
Yesterday I snuck in an extra PSA test and I found today that the increase since going off bicalutamide is less than previously. That's probably to be expected... at least it's not still going into orbit. 
But tonight after getting back from Tony Gibson's funeral (cancer, at 72) there was a message to say they want me to be in Auckland Hospital on Thursday.  "Planning", I think the message said...

13th Oct
Today we fronted up to a different registrar and a different specialist, but there were many of the same old questions. At least I wasn’t measured and weighed this time, but the history of my cancer was itemised all over again. It’s probably like those insurance companies who keep asking you questions so they can catch you in a contradiction and then refuse cover on the grounds of non-disclosure… Well, by now, there’s nothing much undisclosed about me.

This interview was to look at the possibility of “targeted radiation” on the L5 vertebra which appears to be affected by cancer cells. I understand they call it “spot welding” in cafeteria conversation.

One point of view was that the scans showed this is the only place where my prostate cancer has invaded some other part of my body. The radiation won’t kill the cancer but is really just a palliative measure to ease discomfort.  It could be quite sensible to do nothing until I feel some pain which could be alleviated by the treatment.  I am always on the side of doing as little as possible and this was a persuasive thought.

But of course, the white-coated ones would really like to do something rather than nothing and they have two strong arguments. One is that by the time I am experiencing pain related to this invasion, the chances are that the cancer will have spread further. It wouldn’t take many occurrences to make it quite impracticable to treat with targeted radiation.

The other issue is that this particular site could put pressure on the spinal column and affect sensation and motor coordination in my legs. By the time I became aware of that the damage would be irreversible.  Early treatment might slow the activity of this particular cancer spot and preserve my mobility for a time. Again, by the time my mobility is affected, it is likely that the cancer will be more widespread anyway…

So we’ve decided to go ahead with five sessions on L5 and its adjacent mates.   This will be daily visits to Auckland Hospital for a Mon to Fri week. And there will be a new and slightly different bunch of side-effects.

There will be a bone scan at some stage. This is really just diagnostic but it may be useful to see if there’s major weakening of my bone tissue. And we are also watching my PSA to see how it has reacted to having no bicalutamide for the last few weeks. There are possibilities of using some other drug to do basically the same job but perhaps more successfully.  The mainstay of treatment is still the quarterly Zoladex implant which has pretty much shut down production of testosterone which the cancer feeds on.

So the journey continues. We are cheerful and keeping very well. All this stuff could almost seem remote and of no significance. But we are reading the signs and taking reasonable precautions. And getting on with life. Another really satisfying book project coming to an end about now.

5 Oct
We've got a date for a consultation about targeted radiation on the cancer at L5 in my spine. It will be on 13th Oct and it will be in North Shore Hospital, so at least we won't have to make another trek into the big smoke.

Apparently we are also going to talk about a bone density scan at some stage, too. Another couple of meetings and stuff, I guess. And it won't add a day to my life...  

I've noticed some small lessening in some side effects since being 0ff Bicalutamide but so far have no idea what's happening to my PSA. I can take a bit of a guess, though! That will be checked again in a couple of weeks...

And, yes, the caravan was sold. The end of another era. But life isn't all endings around here by any means!

18 Sept
Had a good consultation today after a hectic trip through Auckland commuter traffic to the city hospital for a 9.30am appointment.

We were a bit shocked to find that so little of what we had previously recounted several times over had to be done all over again. But Anna drew some great pictures on her large blotter and explained the issues very clearly for us. Then the Ca Pros consultant Frith came in and we summarised it all again. This is the gist:

·       I will stay on Zoladex (last week I had the first shot ever without anaesthetic – it’s a big injector and that was a stirring experience!).
·       I will go off bicalutamide for three months. It may not be working very well and stopping it may possibly slow the increase in my PSA.
·       If my PSA is still shooting up at six weeks, we will try an alternative such as Cyproterone. (I’ve googled that and there’s another huge list of side effects…)
·       And, of course, there is the celebrated Aberaterone at $5000 a month. Well, we sold the caravan today but that would nett us enough for 40 days dosage.
·       I am going to be referred for possible “targeted radiation” on the small cancer on L5 in my spine. This seems a rational step and we are willing to consider it. It would be at Takapuna, much easier to negotiate.
We will meet in Auckland in three months and assess the situation. Options then will be:
·       Treatment with steroids to slow the production of the small amount of testosterone generated in the adrenal glands. H’m…
·       Some cycles of chemo, but the benefits seem not to justify the discomfort. Men usually have it easier than women, says Frith, but she concedes that the extra span of life is a matter of months not years…
We finished the leisurely and thorough discussion with the formation of a Mutual Admiration Society and a light-hearted sharing on the foibles of the human body and human nature. I think we all went away feeling that we had done something worthwhile. We are looking forward to many more quarterly meetings over the coming years.

Altogether, unexpectedly encouraging. Perhaps we should have delayed selling the caravan until we’d had this interview…

6 Sep
We now have an appointment with oncologist for 18 Sept. 9.30am at Auckland Public sounds like a commuter's nightmare from out here but guess we will give it a go and see what the options are. 

If I add anything to the CaPros story I will bring this post up to the top of my blog. If it's not there, loyal readers can take it that there's nothing new to know. Cheerio, all!

28 Aug
As those who have been following this blog will know, I fell at the last hurdle for the ARN-509 Trial. This was confirmed at today's consultation. All three scans showed a “metastatic deposit” at L5 on my spine.

It’s unusual that with prostate cancer there should be only one spot, so the white-coated ones feel that I’m a good candidate for “targeted radiation” on that site. They also suggest some ongoing medication to moderate the rate of growth of cancer cells in other places not yet identifiable. So we now have a referral to an oncologist who will take us through the options, probably in about a month from now.

In all of this, it’s clear that we are at a great advantage in now living closer to the kinds of facilities that are available on the North Shore for my particular situation. At the same time, we will be looking closely at what’s being offered in the context of quality of life vs length of life and so on. Meanwhile, we have some interesting things to do, including the Beyond the Borders seminar on Progressive Spirituality for three days from Thursday. Ironically, we will miss our Barbershop Chorus's presentations at the local Hospice on Friday. Might have been interesting to see the inside of it. (Did you hear about the new Hospice facility that was so impressive people were simply dying to get into it?) (Oh, sorry... bad taste...)

21 Aug

That part of my journey of more than a dozen years with prostate cancer has run its course with disappointing results. Yesterday's MRI couldn't rule cancer out in my back, so I will not be going onto the Drug Trial.
I have put myself back onto Bicalutamide within the hour, but not with much hope for improvement as it seems I have been "castrate resistant" to it for the last two or three years.
As to where we go from here, there is the possibility that, as there seems to be cancer in only the one location (this is a little unusual), we could try "targeted" radiation on that area. That will be discussed next week if I can be fitted in. There will be a lot to think about vis a vis side effects and quality of life as against realistic benefits.
Up to now I have ruled out Aberaterone at $5000 a month for the sake of perhaps four months; extended life. Pharmac is considering funding it, but I am sure it should do that only for men much younger than me.
All in all, a bit disappointing. But with my luck, I probably would have got the placebo!

20 Aug

Well, they were running late at North Shore Radiography yesterday. The new suite is very efficient, and the staff great. But the huge amount of noise must be upsetting for some people; the thing sounds like it's out of some Victorian engineering works or perhaps some Pixar cartoon. I would have thought that in this day and age technology would be a little more attuned to the comfort of those inside the thing. And the neatly printed leaflet didn't warn me that I would feel like I was being cooked in a microwave oven, from the inside. Talk about making the blood boil! But not unpleasant in the rather cool suite.
Oh well, now to wait for the white-coated ones to deliver their verdicts in Takapuna and USA... Will I get on the Trial of ARN-509 or is the cancer already well established in my backbone... (have just found I can't spell verte-something - better check up on that!)

15 Aug
MRI is next Wednesday...

8 Aug
Just had a phone call. It seems the scans the other day were pretty OK but one of the hot spots I noticed, on my backbone, is to be further checked. Looks like an MRI will be done for that. Off to Paihia now for the Jazz and Blues Festival... (See below)

5 Aug
Went into the city and did the scans today. CT and Bone Scintigram. Lots of fascinating machinery, not to mention chemistry and just old-fashioned water in vast quantities over lunch. ("Drink a litre of water and back back here with an empty bladder"  Oh, sure....)
Some white-coated people will have to tell me what the scans all mean, of course. But the bone scan evidently shows some hot spots, which probably correspond to occasional twinges I've had. One in the groin is no surprise and one in the left knee half-replacement confirms some clicking and a little pain I've had now and then. But another in the lower backbone doesn't ring a bell with anything much. I've got the CDs and will have a crack at reading them. But we expect to hear towards the end of the week, anyway.

1 Aug
I had my major assessment interview yesterday and contributed a bit more blood and urine to science or medicine —I am not quite sure which. Next week I will have the scans that will probably be the last hurdle to being accepted for the Trial.
It was sobering to review my complete history and to see how much the public health system has helped me over the last fifteen years. It seems I do have quite a few “old age complaints”.... But complaining is exactly what I should not be doing. It’s a great life and we’re both lucky to be fit enough to make the most of it. And this is a place where you can do that to the max. 

30th July 2014
My provisional application has now been approved by the research team, so it's on with interview and more tests this week and, all being well, scans and stuff next week. Moving along, eh...

29th July 2014
I've just had my third successive PSA test in three weeks and my readings have been sent off for assessment. We think that the level seems to be moving up at an acceptable rate for me to qualify for the ARN-509 Drug Trial. (Actually, it looks like a horrific increase to me, some 15% in just ten days... But here's hoping...)