Friday, December 28, 2018

The Ca Pros Report

DEC 28:
Over the last three or so months my PSA tests have shown significant increases, but yesterday's test (27 Dec) is a doosie. From 55 to 95 to 170 in two months.
My GP phoned up with the news and is very concerned. We have agreed that if I am not called up by Medical Oncology in a week, well, the week after New Year perhaps, we will need to stir them up. He would like them to prescribe something new but my hunch is that Abiraterone is already coming up from the bottom of their barrel.
However, looking over our history of the last three months, Bev and I have just realised that in September we shifted my Abiraterone doses from evening to morning (it was a rational and perfectly OK move, having always been an option for us). A quick visit to Dr Google found a couple of references to the possibility that breast cancer treatment may be more effective if the medication is taken at night instead of the morning. Since prostate cancer uses the same kind of receptors to feed on maybe it might work for us, too. It's been a fairly simple decision to shift my dosage back to evenings from tomorrow.
Meanwhile, apart from minor back pains, I continue to feel much better than six months or, indeed, two years ago and it's hard to take all this seriously while we get on with important things like promoting the End of Life Choice Bill. And enjoying a short cruise next month...
NOV:
My latest PSA  test has shown another rise to 57 - about where I was in June last year when starting Abiraterone. Disappointing but just a continuation of the overall trend for fifteen years... At least a Testosterone test showed almost unmeasurable levels - well, I could have told them that...
Strangely, my balance, vertigo and unsteady walking have improved a lot in the last month or so. We think they've been caused by the inner ear problems being spasmodic rather than chronic. (These kinds of problems could even have been kicked off by our flight to Christchurch for family visits last month when I had a particularly unsteady period including couple of spectacular falls).
So we keep on learning and life continues on its cheerful and fascinating way. I told my GP the other day that this month I have felt better than any time in the last couple of years...  So, all good.


OCT:
In Mid-October we reported again to Medical Oncology and they have approved my continuing on Abiraterone and other assorted chemistry. A slight rise in PSA to 37 is not worrying them. There's a new wonder drug out now but it's not on the free list and I wasn't invited to ante up for it myself.
I'm going to see my GP regarding my balance and the occasional fall. But is it caused by the disease, the medication or just old age? And who knew after fifteen years on Zoladex I should expect some loss of muscle tone - noticeable when I lifted up one of the GG children last month...?  All going pretty well, then...

SEPT:
For the first time in more than a year my PSA is back down around 25. My Doctor said, "Don't think about it, just be grateful for it". And I am. But perhaps the combined assault of Abiraterone and the half dozen bursts of radiation therapy at the end of June have at last produced a more modest PSA than we've seen since mid last year. In a month when my one-year licence for ABR is coming up for review that's pretty encouraging.

However, side effects of the hefty medications I am on include a lot of balance problems and I have taken the odd tumble and a lot of near-falls. But all in all, my quality of life seems pretty good compared with the alternative so there's much to be thankful for. And there's still some work to be done in advocating for personal choice at my end of life. Now there's something to live for !






Monday, December 24, 2018

That Bill Again


The Justice Committee is having some of their work done for them.
It was always on the cards that some changes would need to be made in the Bill. But its sponsor, David Seymour MP, has sent a 77 pg document to the Committee suggesting changes.
His summary is that the Committee should amend the Bill to provide for:
• a binding referendum at the General Election after the Bill has been passed by Parliament
• amending the eligibility criteria to limit eligibility to terminal illness, not other "irremediable" conditions
• stating clearly that access to assisted dying for people cannot be by reason of mental health conditions and disabilities only
• incorporating the Access to Palliative Care Bill sponsored by Maggie Barry MP.

David also also suggests amendments to clarify the role and protection of pharmacists, nurses, and medical practitioners, the purpose of the SCENZ Group, the register, and the issues of advanced directives, insurance, and suggests providing for the issuing of delay certificates for a person who is eligible for assisted dying but wishes to change the timing of administration.
It seems a remote possibility that Maggie ("Tea Lady") Barry will be pleased to have her alternative proposal incorporated into the End of Life Choice Bill. That's an olive branch that is probably dead on the tree.
Otherwise, David's paper is a comprehensive review of his own Bill and seems to accommodate a large number of the major concerns that have been raised in submissions and public meetings. Let's hope it moves the whole discussion forward. The Committee is to report in March. 

Friday, December 21, 2018

Words Matter


Image result for tvnz Standards committee

I've lodged a complaint with TVNZ about the use of the term "euthanasia" to describe the End of Life Choice Bill.
I believe the use of the word contravenes three broadcasting standards:
1. Balance:
The word "Euthanasia" is universally and deliberately used by opponents to the Bill and is offensive to those who support it. It is emotively loaded with visions of shooting a sick  horse. No alternative word was used at any time on at least two formal programmes on TVNZ a couple of weeks ago.
2. Accuracy:
The word is simply not accurate to describe the Bill. In fact the word doesn't appear once in the Bill.
3.  Fairness: 
Because the word is used, deliberately and incorrectly, by the opponents of the Bill its use in the public media in respect of the Bill is demonstrably and obvious unfair to the Bill and the 70% of the population who support the general principles. It is pejorative and  judgmental.

Friday, December 14, 2018

A conscience vote?


Image result for a conscience vote

It's been interesting for me to note that half a dozen NZ parliamentarians and candidates at a semi-public meeting all announced that their intention for the End of Life Choice Bill was to vote "according to the wishes of my electorate".

It was as though a "conscience" vote was something they were not prepared to make. I suggested to our local MP (who was at the time "undecided")  that I would rather have his vote "in good conscience" against the Bill than have him go into the debate still vacillating.

But, actually, I didn't think too much about the issues. A "conscience" vote is not just a vote for one's own personal opinions and beliefs. For instance, We saw many MPs vote for the First Reading of the Bill although their personal inclinations were against it. They were taking the attitude that at least the Bill deserved a thorough hearing from a competent Committee before being thrown out by Parliament. That was a responsible act and I told my MP so.

When the next Readings of the Bill come along I would like to see a few MPs paying less attention to their own views than to the good of the country as a whole. I hope that some swinging MPs and even some who have decided to oppose the Bill might, in conscience, pay enough attention to the negative aspects of end of life as it is for many people at present that they might even vote for the Bill against their personal convictions. I'd like them to say "I do not want the personal choice of a different end of life for myself" but my "conscience" tells me I should vote for the Bill to give others the choice.

So personal views and opinions are not the whole of a "conscience" vote. It must also include consideration of more issues than just personal ones. It must include the understanding that the conscience of an MP has to do with making decisions for the good of the greatest number of the population. Even against one's own personal beliefs.

When this Bill comes back to the House MPs will be free to vote according to their consciences. Hopefully, the consciences of some will remind them they are voting for the whole population, not just the promotion of their own beliefs.



Monday, December 10, 2018

Rodney Voters - Where were You?

A few months ago, New Zealanders polled about 75% in favour of a change in the law so that a suffering, dying patient could ask for medical help to shorten one's last days. By far the larger proportion of the NZ population appear to want to have personal Choice at the end.

However, when the Justice Committee of Parliament called for submissions on the End of Choice Bill that would make this possible, some 85% of "submissions" were opposed to any change in the law. Some members of the Justice Committee such as Maggie Barry believe that is the correct figure for the whole population. Again and again she has that declared 85% of NZ is against any change.
Rodney friends: did you offer your views, even to a very brief  note: "I am in favour of the proposed Bill"

When Mark Mitchell called a public meeting to debate the issues in our electorate there was an informal vote taken on the principle. The Bill was marginally defeated on the numbers attending. This has been pretty common in such meetings throughout the country.  Some politicians could take this to mean that more than half of us in their electorates do not want change!
Rodney sympathisers, how many of you were there that night? How many feel that vote was meaningful?

When I've made the fairly obvious point that the opposition by submitters and attenders did not seem to represent the mind of the community as a whole, I've been told that Parliament has to listen to the groups who make the strongest case.
Rodney voters, do you think Government should legislate mainly for the group that shouts the loudest or writes the largest number of one-line submissions?

I don't think so. I am disappointed that so many of us who would like to see a change in the present law simply did not get off our bums to prepare submissions and show an interest in meetings. We just can't be bothered.

Well, friends, we can still write and talk to our MPs. At the end of the day every MP will have to vote on this issue. As a good electorate MP ours is always open to comments from Rodney voters.

If ever there was a time to write or say something to your MP, it is now.

Mark is at:  markmitchell@national.org.nz   or mp.rodney.parliament.govt.nz

The Embarrassing Church


Image result for church and state nz clipart

I see that Auckland City Council, in reviewing its property rates is moving toward extending the concessions granted to churches and other religious groups.
I've said for years that people who have chosen to build a worship building should not expect to receive rates concessions for ever. I cannot see any reason why the state should give members of a religious persuasion this special concession.
But I was clearly against the trend. The ACC has been importuned by some denominations and individuals and is apparently proposing to extend rate-free privileges to a whole range of church properties that are not used only for worship, including properties let for financial reward, for fund-raising and even, would you believe,  the residences of church ministers.
This kind of subsidy of religion by the state leaves me very uncomfortable. I hope that the shouts of glee among Methodist Treasurers will be pretty subdued. Indeed, I challenge them to put this unexpected windfall in their accounts back into increased service of the disadvantaged in our communities.


Friday, December 7, 2018

It's been interesting to me that MP Maggie Barry has come under scrutiny for alleged bullying of her staff.
When I complained about her savagely biased attitude as deputy Chair of the Government's Committee on Justice such further accusations were not in my mind. But I am impressed that others have made the link between her bias and her general attitude, notably Graham Adams in Noted a day or two ago. His full article is really worth a quick read.
On reflection it's quite easy to recognise that her impolite treatment of the two lady submitters who preceded me back in July was not merely biassed but also much stronger and more deliberate that the occasion demanded. I think it's quite likely that they both felt bullied.
Well, the Committee has finished hearing submitters and it will be interesting to see if they have learned anything that was not already reported exhaustively and recorded by its predecessor. We all know how Maggie will vote. But will the Committee stand up to her forcibly expressed opinion?
Perhaps they should invite her to have a cup of tea...

(Regular readers of my blog will recall the incident recorded at the end of my post of 29 June)

Thursday, November 22, 2018

A Genuine Poll


For some months I have been having a (almost) one-way correspondence with my electorate MP on how he intends to gauge the :mind of the electorate on the matter of the End of Life Choice Bill.
I have urged him to exercise a proper conscience vote (even if I don't get the answer I want) rather than to pussyfoot around with taking a snap vote at a public debate attended mainly by a few enthusiastic supporters of the Bill and a large rent-a-crowd of people press-ganged by churches and other "anti" organisations.
Mark has, of course, been heavily involved in the National Party crises of recent weeks but at last we are to sit down together on Monday. So we will spend some time on how he can reasonably detect an accurate feeling from the electorate.
In a rash moment some months ago, I offered to  pay half the cost  of a professionally organised poll of the electorate. Now, I have just heard, Minister Stuart Nash has announced just such a poll for his electorate. This is something concrete for me to put on the table on Monday. I hope that we can set up something like this and that other electorates will follow this excellent example.
It's of relevance that last night we toured down to Northcote for their debate. Only two speakers this time, but no new arguments. A show of hands showed the meeting was about 50-50. But on the voting form we at least had to say if we were in the electorate - so our votes didn't count.
I still think it would be a travesty of the democratic system of last night's vote were taken as a genuine expression of the wishes of the electorate. I hope I can persuade Mark to do something better for Rodney electorate when we talk on Monday

Thursday, November 15, 2018

The regular newsletter of End-of-Life Choice has appeared and I note some fascinating quotations:  Among them is a letter to Catholic Bishop Christopher Prowse from the Chair of Christians Supporting Choice for Voluntary Euthanasia (Australia).
Ian Wood doesn't pussyfoot around the issues. I have his permission to reproduce the EOLC quote from his letter to Bishop Prowse:"

"Evidence recently given by countless victims of Catholic paedophile priests clearly show the abyss and total lack of understanding by the Catholic Church for the suffering endured by those victims. Many of these victims went on to take their own lives in dreadful circumstances - in a cruel irony compared with the Church position on voluntary assisted dying.
I certainly do not write in the hope of changing your mind on this issue. By all means feel free to endure whatever suffering comes your way in your end of life, but I do pray and urge you not to use your position to force me and every other Australian to do the same."
Ian Wood 
National Co-ordinator, 
Christians Supporting Choice for Voluntary Euthanasia, Australia

Ian's letter may be a model for a way for us to challenge our MPs  on the issue.
Also, in another post, 29 August I suggested that the Catholics might well be a bit reticent about volunteering their moral theology on the rest of us in the light of their current worldwide reputation in another area of moral consideration.

End-of-Life Questions


I’m not sure if I should roll up to an electorate meeting on the End of Life Choice Bill tonight — it’s not my electorate and I am already a bit cross that anti-Bill protestors attend meetings all over the place and distort the vote that is usually taken at these events.

But if I go—and can pluck up the courage!—I’d like to ask a couple of questions of each candidate:—
(I am 84, have advanced metastatic spinal compression prostate cancer. I have no other life-threatening issues but I do have a history of undiagnosed and untreated tetany spasms after one surgery. If this cancer is allowed to take its course I can expect significant paralysis, double incontinence and a prolonged, undignified, painful death, possibly without adequate relief of suffering. I don’t actually want that, so—)

1.       Are you personally satisfied with the present law that says it is not a crime if I decide to take my own life rather than let my disease take its course? Yes or No.

2.       Are you then personally comfortable with my reality that if this Bill is not put into law quite soon I may plan to end my life now while I can still manage to drive my car into a bridge abutment or can shut myself up in our garage with the engine running (oh, damn, that won’t work—our car is all-electric!) or get to town to buy a party kit and figure out how to make that do what it was never designed for?