Friday, March 1, 2019

Thank you!


Nearly half a century ago I was involved in some discussion with a staff member of the Dunedin Medical School. There was a growing awareness that mere academic achievement was not the only quality that should be expected of incoming medical students. Having done extensive research in the criteria for selecting candidates for church ministry, I had the opportunity of suggesting to my medical friend that both professions required a high and demonstrable level of interpersonal relations. Perhaps especially among theological or medical specialists, who sometimes appeared to lack the "bedside manner" of the family GP or local minister. I know he took these thoughts to back to the Medical School.
As we have been concluding a five year relationship with the cancer experts at Greenlane Clinical Centre Bev and I have both been discussing the quality of care they have delivered to us.
We have to say that throughout this journey we have been treated with the greatest professional courtesy and yet also significant personal warmth.  We have never been "talked down" to. We have never picked up any hint that we were perhaps taking too much of their time - even when we might have been. We have had many laughs and shared quite a few jokes. My attempts at personal interest in my circumstances have always been meticulously respected - even when sometimes I didn't really know what I was talking about. And my concerns for end of life choice were always heard with sympathy if not outright enthusiasm. Most importantly, all decisions about my medical journey were made in a context of mutual discussion and consensus.
And when they determined that it would be reasonable for me to go onto the very expensive drug Abiraterone (which had recently come onto the free list for 600 men) and I was uncomfortable with the country putting that much money into an old man nobody insisted that I must accept it.
But our consultant said "If this drug could could give you one more year of good quality of life, what could you do with that? He had been reading "me", not just my "case". He knew that there were worthwhile  things I could do and that I would like to them. It was a challenge I could not turn down.
Now, eighteen months later, the drug has run its course and has been stopped. But I can look back on a number of significant projects that I carried through in answer to that challenge. And although I am much more at the mercy of the disease as it will now take its more rapid course, I can only say that I am deeply grateful for the opportunities of these last couple of years. And I have some hope for any time yet to come.
And for the whole five years of careful, warm, "professional" ministry by those whom we have met month by month, we offer our warmest thanks. In the confusion and concern in the public health sector at the present time, we want them to know that their efforts on our behalf are deeply, deeply appreciated. Thank you, all.



Thursday, February 28, 2019

The Ca Pros Report


Feb 28 2019
ON FACEBOOK TONIGHT:
Today we've had the much-awaited interview with our GP and have seen the letter from Oncology Nothing new really. The recent bone scan shows significant changes of cancer on my bones in various places. These signs, the skyrocketing PSA over the last three months, together with the appearance of side-effects from Abiraterone as it ceased to do its job all confirm that this is a time to move on.  It's clear that the cancer is away on a journey of its own and nothing much can be done to slow it down never mind stop it.
It feels good to have a clear picture of what is going on and to be learning how we can manage life with less discomfort than during the last couple of months. As ever, it's a day at a time...
OTHER COMMENTS:
All anti-cancer medications are being stopped now they are not working but we will monitor my bone strength and PSA (just for fun really!). We are also going to watch my withdrawal from anti-depressants and steroids.
Dr Barry will register me with Hospice for their home-visiting service especially for pain-management and advice. This does not necessarily mean I will become an in-patient but the option will be there

It feels good to have a clear picture of what is going on and to be learning how we can manage life with less discomfort than during the last couple of months. As ever, it's a day at a time...



Feb 15 2019
There's been a whole lot of water go under the bridge in recent weeks. 
We couldn't get an appointment with Medical Oncology before last Monday due to the Christmas break and a two-week cruise in the latter part of January. Meanwhile my PSA went up to 270 in just one more month.
Significantly, my appetite faded just before Christmas for the next few weeks - a side effect of Abiraterone that I should have recognised. And my tiredness and sleepiness became chronic - also connected to medication that might be losing its effectiveness.
The long and short of it all is that a hastily-arranged bone scan revealed extensive metastases in my spine and upper body bones; a short consultation at Medical Oncology confirmed that Abiraterone is no longer working and should be ceased.
We'd already made the decision to have no chemo (in any case, it is not recommended after Abiraterone). Now there would only be experimental medications that would not be on the free list, We agreed that it was time to cut our ties with the hospitable, informed and dedicated team at med. onc and to work with our GP  from now on.
Neither of us was at all surprised by the outcome of this final visit. The signs have been there for some time and it's now a new day and a somewhat different journey. We have to express to the Greenlane team our gratitude for their innovative and generous support through these last four or five years, years of which we had absolutely no expectation when we moved down to Auckland five years ago.
Meanwhile, the Committee considering the End of Life Choice Bill is to report next month and we need to get stuck into trying to promote the Bill in the face of massive, organised opposition..

DEC 28: 2018
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 !






Tuesday, February 19, 2019

The Voluntary Euthanasia Tea Lady invited to stand back

From noted.co.nz I have just received this perceptive view on Maggie ("Tea Lady") Barrie's blusterous opposition  to the Bill that most New Zealanders would like to see adopted.  
"As for Maggie Barry, her shortcomings as an opponent of assisted dying were again on full show last December after David Seymour released a (70 pg) report suggesting amendments to his bill.
"She was obviously blindsided by his recommendation that, in response to public concern, the bill should be amended to be available only to those with a terminal illness (removing access for those with “a grievous and irremediable condition”); explicitly exclude eligibility on the grounds of mental health conditions and disabilities alone; and incorporate the palliative care bill sponsored by Maggie Barry herself.
"Barry’s televised bluster in response to his eminently reasonable but clearly unexpected news was simply embarrassing to watch. She dismissed Seymour’s suggested amendments as an “extraordinary flight of fancy”, “publicity seeking” and accused him of “being cute”.
"It is clear that her opposition to the End of Life Choice Bill — centred on alleged risks to the vulnerable — is implacable and no safeguards or restrictions could ever be sufficient to satisfy her.  Indeed, it seems highly likely that even if every assisted death were filmed and the evidence presented immediately to the police to show the dying patient willingly took the lethal medication themselves after all the necessary precautions and paperwork had been observed — as happens at Dignitas’s clinics in Zurich — Barry would still claim the safeguards were inadequate.
From the short public interaction that I had with her (My blog June 29 2018) I would have to concur. But whereas a few months ago I invited her to stay out of the public domain as a member of the Justice Committee, perhaps I should now encourage her to carry on just as she has been doing. Even the National Party must recognise that they have a loose cannon on the deck on this particular issue... 

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.

UPDATE 15 Feb 2018
PS While I was away TVNZ took  six or eight pages to tell me I was wrong on all counts. But I sense that part of the issue has at least been reconsidered. I hope that helps. 

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 last year 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 of you felt 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 writes the largest number of one-line submissions on the instructions of their church leaders?

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 or 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