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 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...)

Elderly Virgin Bashers!

Bev and I are entering the Cup Cake Car in the Ewen Gilmour Memorial Variety Mini Bash next weekend.
It's all been a bit of last-minute stuff but we will kick off with breakfast at Wainui School on Friday morning next and join the convoy of a couple of dozen loony vehicles from there... There will be school visits, a working bee and bucket shaking for the cause.
We'll be the oldest bashers on the run to Warkworth, Mangawhai, Whangarei, Tutukaka, finishing at Ruakaka on Sunday.  You can follow the Bash over the weekend at Click on BASH TV and maybe catch a glimpse of us. Somewhere there you can also donate to the Cup Cake Mini if you want to.

Sunday, October 5, 2014

End of the Road for Small Congregations?

The word came to me today that the Methodist Church is moving away from Local Shared Ministry. They have a new word for whatever it is that they are going to put in place. It seems to be ministry teams of lay people. But it doesn’t seem to pick up the simple essentials of Local Shared Ministry.

In a sense, this is no surprise. My denomination’s commitment to LSM has never run much deeper than putting some provisions into the law book a few years ago. Dedicated leadership in implementing the policy hasn’t been given. The revitalisation of dwindling papalagi congregations has not had high priority in a church with multi-ethnic responsibilities.

Now, after decades of being ignored, small congregations are learning that all Methodist buildings be closed unless they meet twice the level of earthquake security that the government requires. It must seem as if the denomination is deliberately planning their demise.

Perhaps it is. Who knows?