The Ca Pros Report

Otherwise known as the Metastatic Castrate Resistant Prostate Cancer report (I am now officially diagnosed as MCRPC.

After one month on Abiraterone my PSA is not significantly down but at least it's what the white-coated ones call "static". And, checking my pulse and blood pressure once a week and measuring my ankles now and then, I seem to have had no discernible side effects. So far, so good.

Part of taking out this new lease on life involved accepting nomination for the Village Residents' Club Committee and at the annual meeting yesterday I was elected. That'll be an interesting and challenging experience as the previous committee was not highly regarded. But there will be some people who won't necessarily want a whole lot of change at once. We are going to have to take it very quietly, I suspect.

Another annual meeting tomorrow. I expect to be coming off the Community Patrol Board  but will continue with media and promo work. Which will probably mean I will have to go to meetings anyway! But it's good to see some new people offering... and we have a very substantial team of volunteers these days as the profile of the Patrol is being raised in the community...

I’ve just received the last issue of Budgetline. This magazine has been coming to me for longer than I can remember in my rather remote capacity as a Life Member of New Zealand Family Budgeting Inc.

The short articles in this issue are quite poignant as it has been given over entirely to the Head Office staff and other key people who are losing their positions in the big re-shuffle that is taking place. Again and again I read of disappointment that the organisation which they have served, both as paid staff and volunteers, is losing its identity next week.

In 1973 I wrote the first letter that went to about 25 organisations with a proposal to form a national Federation. Later we got a couple of dozen people together in Wellington for a day. And what an outcry there was! They were afraid they’d lose their autonomy, their personal involvement, their idiosyncratic workers. They didn’t want to have a national boss...

But it was all about money. Every group needed some financial assistance for expenses for its volunteers. Some wanted to pay experts to do the job. Government would only give assistance to the 30 or so groups if they presented an organised front. So, with mixed feelings, the Federation came into being.

It’s been a huge success. It has lifted standards, provided proper supervision and training and widened the work. And, to the concern of some of us who were around in the 1970s, it has absorbed millions of dollars a year of taxpayer funding to achieve this.

But there are other groups involved in this kind of work who have never affiliated or don’t qualify for affiliation. Government now invites all family budgeters to come together in some much broader organisation. So the Federation, which we brought into being under pressure from successive Governments, will next week be wound up because the Government wants to move in a new direction.

It’s touching to read the stories of those who have worked in the Federation in the last decade or two. But times have changed, politics of voluntary community services have changed and the need in the community is more vast than any of us could have conceived in 1973. So some of the Federation’s prized principles will be surrendered and unfamiliar territory will have to be traversed. At the end of this month, everyone will move on.

I salute those who transformed a modest voluntary operation into the NZ Federation for family budget advice of a very special kind. As it moves on, I hope its people will infuse the new organisation with a sense of personal service and commitment. This new venture must not become just another quasi government department.

Dave Mullan is author of—

The Family Budgeters, a personal account of the work of family budgeting from the 1960s to the establishment of the Federation.  As one of the last “steam budgeters”, Dave was asked by the Federation Office to put together some kind of record of the earliest days of this remarkable movement of voluntary community service. That he was able to achieve this in 2015 is all the more important now that the Federation itself is moving on.

A Small Qango, the story of the Home Budgeting Advisory Committee to the Minister of Social Welfare, 1977-1987.  Dave served on this Committee for its full ten years, eventually becoming its Chair. It was the first attempt to direct public funding towards voluntary family budgeting groups. In charted new paths for a Quasi Autonomous Governmental Organisation.

End-of-Life Choice and end of Voluntary Euthanasia Society

A quick AGM yesterday disposed of the name with which most of us have been a little uncomfortable for some time. The word "euthanasia" seems to be a turn-off for a lot of people. So, what used to be the Voluntary Euthanasia Society of New Zealand is now to be known as End-of-Life Choice. With hyphens.
The Committee is the same, the objective is the same, but we have chosen to eliminate an unsatisfactory expression.
Ironically the guest speaker in the afternoon public session. Dr Jan Bernheim, used the word "euthanasia" liberally and without qualification. But his fascinating talk made it clear that Belgium has moved far beyond our sensitivities around the use of the word. And they have certainly moved far beyond our tentative reaching out for some new practice that will express the growing concern for suffering people to have some choice about the ending of their life.
Before 2002 Belgium did not have the highly developed hospice movement that has made such a different to the quality of death for some decades in this country. But when they did address the issue of dealing with the last stages of life they had the opportunity to include a style of what they cheerfully call "euthanasia" along with a wide range of palliative care.
This linking of palliative care with doctor-assisted-death delights me. I've been feeling for some time that the body that is already dedicated to dignity in dying is the body that should embrace the opportunity to carry its objectives out to the full. Hospice, far from railing against physician-assisted-death, should be the organisation that develops a compassionate philosophy of patient choice about life's ending and introduces practical opportunities for that choice to be exercised.
When former Prime Minister John Key said "NZ doesn't need voluntary euthanasia because we have Hospice" he demonstrated a total misunderstanding of both and uttered a forgivable lie. When Hospice says NZ doesn't need any kind of doctor-assisted death, they also are fumbling with the truth. Worse, they are denying their organisation the opportunity to take a great step forward in their own mission of improving the ending of our lives.

I see the Interchurch Bioethics Committee is "disappointed" that Seymour's End of Life Choice bill has popped up in the Parliamentary ballot box. Well, I don't share their disappointment - I am overjoyed.
However, I appreciate those of their concerns which are based on realities. I hope, with them, that we will move through this process with dignity and precision, taking care to listen to all sides.
But to plead that the whole matter be held over indefinitely is failing to read the mood of the country. Parliament is already setting us a great example in hoping the matter will go away. Contrary to what they and the ICBC think, this matter is already an election issue and we need to make the best use of it that we can.

Another dip in the box

Another bill that has been just drawn from the Parliamentary Ballot box is also of interest to me. It's a bill that would legalise the use of medicinal marijuana... I might be glad to have access to that somewhere along the way before I decide about "medical aid in dying" (as I would like it to be called in this country).
But that's looking ahead at the moment. So far, have hardly started into the 720 doses of Panadol I was accidentally prescribed a few months ago.

A Lucky Dip

David Seymour's bill on "end of life choice" has been drawn from the Parliamentary Ballot box. It has lain there for two full years and the luck of the draw was the only hope that Parliament would even discuss the issue.
Though neither of the major party leaders is keen to have the debate it is now likely that Members will have to at least consider it in the fading weeks of the parliamentary term. And now that the bill is on the table there is no way it cannot now be an election issue.
The annual meeting of Auckland district's Voluntary Euthanasia Society/End of Life Choice is tomorrow, and the national annual meeting is a week later, also in Auckland. Both meetings will be enormously encouraged by this news. I'll be there to share the satisfaction and plan some strategy.

Believe it or Not

Today we went to Medical Oncology and met again with the prostate cancer team leader. They must have heard of our discomfort about going on Abiraterone and sent along their best operative!

We’d met this charming fellow last year when he introduced me to two new drugs that turned out to be absolutely life-changing. So we had very good rapport and plenty of confidence in him. Especially when he said he was determined not to try to talk us into accepting a medication we were not quite happy about.

We canvassed the alternatives: chemo is an option but we had already decided that was not for us. Targeted radiation on the spine is a possible option if we don’t do anything else but the recent scans did not suggest that there was widespread cancer at this stage.

So we turned to Abiraterone. We worked through our dozen or so questions and were surprised to find that our consultant was a member of the team that did the first trials on Abiraterone seven years ago in UK. I had read of these on the internet and had been looking forward to finding more about it year by year ever since. He’d had extensive experience with hundreds of men using the drug, not just the limited numbers who have qualified for it in this country. It was no trouble for him to answer every question with illustrations out of that experience.

Serious side effects, he said, were virtually non-existent. It became clear that a lot of our misgivings about side effects and quality of life were, in his experience, not really appropriate. Benefits in slowing the growth of the cancer were not great but measurable. Extra life expectancy, yes, is only a matter of months.

We queried him about the advantage of commencing this drug when I have no significant symptoms of the cancer—beyond a couple of bouts of back pain recently. The fact that this month’s CT scan didn’t reveal any great advancement of the cancer in my backbone also made us wonder if this was an appropriate time to start this kind of medication. His view was that using Abiraterone while I am in good shape is more likely to give another year or two of good quality of life than delaying it until I need more frequent medication for pain.

Also, we found that we can control the amount of medication I take and he mentioned some ways in which I could get extra benefit from what I do take. And he thought that, if it turned out to be reasonably efficacious, we might plan for a course of up to twelve months. It would not be for ever. Indeed, he said, if the cure seemed to me to be worse than the disease, I could stop at any time.

He said that in selecting the limited number of men who may be suitable for this expensive medication, his team take into account the specific elements of the patient’s cancer and overall lifestyle. He reminded me that my cancer is only 7 out of 10 on the Gleason scale so it seems to offer a realistic target for further hormone treatment. He also suggested that my lifestyle, general fitness, knowledge and attitude would seem to make me a better candidate for the drug than many men half my age.

He even challenged me with the thought that it would be a good thing if the drug enabled me to continue to speak out about the issues of life and death which are becoming more and more part of my own personal experience. (Flattery will get you everywhere, I thought—but I will think about standing for the somewhat dysfunctional Village Residents’ Committee!)

As have all my friends, he urged us to keep the massive cost of this drug out of our deliberations. My ethical concerns about the disproportionate amount of the country’s Health budget that is spent on people at and above my age remain. But I know that if I decline this offer it will not actually make much difference to the health prospects of middle aged men with prostate cancer and it certainly won’t provide breakfast for a few more school children.

Certainly, life —and the NZ State—owe me nothing. At my birthday last week I passed the average life expectancy of NZ males. And we know that men with Metastatic Castrate Resistant Prostate Cancer (MCRPC) generally die within two years—I am halfway through that period already. In a sense we have nothing to lose. And perhaps I still have some good reasons to remain active and well.

So we have accepted a prescription and will make a start.

But chemo? — forget it!

Suicide Statistics

While the official in charge of Mental Health in NZ is doing his belated homework and trying to find out how many people committed suicide each year on his watch, I'd like him to tell us also how many of those suicides were of suffering, elderly people who, fearing they were about to lose control of their lives decided to take matters into their own hands.
Other more conscientious researchers are telling us that this number is increasing substantially in this country in the absence of any serious plan for introducing a more orderly alternative. It would be interesting to know if the present ballooning in the number of suicides is actually of the young people with whom entertainer Mike King does such a great job. But it's possible that the increase could be among the suffering and scared elderly, in whom nobody seems much interested. We need to talk more about this....

PSA down? Really?

Well, yesterday's PSA test, exactly a month since my last one, is actually down from 60 to 56. It's not a significant change but it's better than another "three-month" doubling. That would have been pretty serious.
We have an appointment for next Tuesday and the big question of what happens then will be high on the agenda. We have a large list of issues we wish to discuss. But the gist is that we continue to be comfortable about resisting further intervention just for the sake of three months of extra life at the end... Whenever that might be.
We don't want to seem ungrateful to a benificent health system but the outrageous cost for those additional three months of life does not seem to be justified in someone of my age and relative health. If I felt a whole lot worse because of the disease I suppose I might feel differently about medicating to postpone the inevitable... But the reality is that for nearly fifteen years my quality of life has been affected only by the side effects of medication, never by any symptoms of the disease.
Abiraterone is maybe too much, too soon...

Light at the of the tunnel?

A recent newsletter from End of Life Choice NZ reports that there may be a shift in the views of the Parliamentary Committee studying ending of life in NZ.  At the submissions last year, Bev and I heard at least one Committee member say firmly that there would be no recommendations coming to Parliament as a result of the Committee’s work. They would merely collect data and pass it on to the House. 

But now, according to Chair Simon O’Connor, who has made no secret of his outright opposition to any change in the law, there seems to be a change of heart. He is quoted as saying he suspects the Committee will actually make recommendations. 

“I think at this stage it probably will go further than simply (ask) the House (to) take note of its report," he said. "I think there are some elements coming through - most members, if not all, think there are some things we should be recommending further here.” 

This is a more encouraging view than we have heard previously from the Committee. It will hearten members of End of Life Choice (the upcoming name for the Voluntary Euthanasia Society NZ) as they have their annual meetings next month.