Prostate Cancer Report

4 July
We're a day ahead of you, but to all our friends in the USA, have a happy day. We're both amazingly well and having a wonderful life and wish we could touch base with you on your special day.

Well, the Prostate update:  
My PSA test this week, just one month after the one mentioned below, shows a 50% increase for the month. That's higher than any increase I've had any time since diagnosis. We can't ignore that. (The increase is a more important measure than the actual PSA.)

I can extrapolate that increase forward for a couple of years and do the same with the 50% increases I had until we intervened with radiation last October. I can then compare how long it would have taken me to get to the same PSA level without the radiation. It looks as if the radiation gave me only three extra months. Of course this assumes both rates of increase remain exactly the same - that's pretty unlikely. So my prediction is a very rough guide. But interesting.

We already know that the average extra life expectancy for castration-resistant men who have chemotherapy is only about three months and we have figured the inconvenience wouldn't be worth that very small gain. Radiation was a more comfortable way of achieving what seems to be the same gain in final months. (And, of course, it was primarily designed to reduce the potential for compression on my spinal column, not particularly to slow up the general growth of cancer.)

So what about the hugely expensive Abiraterone? I am checking on that and have seen one trial report that suggested five months increased lifespan. So, on average, all these mysterious medical deals, for someone of my age and Gleason Score, don't promise a dramatically extended life. And $5000 for just one month's supply of Abiraterone could, according to this morning's paper, provide supplies for a whole term of the children's top-up breakfast programme in one school.

H'm...
2 July
We got into the city in good time this morning and had a lovely lunch at the Wintergarden cafe - I don't think I've even been there before. Then we left the car in the Domain and took a pleasant walk in the sun over to the hospital for my three-monthly review.

As expected, this focussed on the sharp rise in the rate of increase of my PSA over a recent month. It was doubling in less than two months - a pretty dramatic rate. As before, we are not looking seriously at chemotherapy - the gain in lifespan is very small relative to the inconvenience and lifestyle issues in the therapy.

Aberaterone is likely to be the medication of choice now. It has recently come onto the free list - though hugely expensive, whoever is paying for it. And it's not a cure, of course. Furthermore, I'd have to take Prednisone along with it and that is not a very pleasant prospect. So we aren't keen to rush into that.

At my suggestion I am doing two more PSA tests so that in about a month we can look at the trend across three monthly tests and see if the increase is continuing. If so, then it would seem we will be availing ourselves of the generosity of the NZ public and accepting a longer stretch of a less comfortable life for a time.

Meanwhile, my only complaints are about the side effects of the Zoladex I've been taking for a dozen years. It's extraordinary to feel reasonably well and fit and yet have to make life-changing decisions to treat a condition that still hasn't made any discernible impact on me. I guess we will soon have the opportunity of balancing the issues. Meanwhile, excuse me, but I need to get on with writing a kind of history of Family Budgeting in New Zealand 1959 - 1978....

Violence and mayhem in the night - a Human Right?

Another shooting tragedy in the USA must make a lot of us think. But before we in New Zealand rush into print about the inability of American people to adapt their views and legislate on gun control or race issues we should reflect on what was announced last week about the liquor regulations in Auckland.

The draft regulations proposed quite substantial changes to the availability of alcohol on Auckland streets at night. There has been a lengthy period of public consultation with strong support from health authorities, the Police and the general public. 

But lobbying by the “hospitality” industry has successfully and substantially watered the proposals down. It’s as if the Auckland public’s right to tolerate a large amount of violence, injury and general mayhem in the overnight streets is as precious to them as the American right to bear arms is to the American Rifle Association. At least the latter have an interpretation of their Constitution to bolster a thin case.

Not so in this country.

Sir Peter Williams

I see Sir Peter Williams has died.

I've been watching his journey with prostate cancer for some time. I got diagnosed a couple of years earlier than him. We're almost exactly the same age. We've had a similar journey for quite a few years. And, in different ways, we have tried to be people who would made some kind of contribution to society. But our lives crossed only once.

It was half a century ago. We shared an illegally fast trip to Auckland airport in his car to meet a member of my church who was to be a client of his for the next couple of years. There was a problem involving an iron bar and the head of an off-duty detective. Peter called me as a character witness in the Court case. Both relatively young and early in our respective careers, we developed an immediate respect for each other. 

We never met again. But his passing touches me today. I followed with great interest his work with the Howard League and passion for prison reform. I received his book for Christmas and enjoyed his account of the cases he selected (yes, the one I was involved in was not on his list as particularly memorable). But most of all I was simply moved by his philosophy of human nature and his motivation to remain on the side of defence throughout his professional career. 

An extraordinary man. 

An end and a new beginning

The High Court judgment went against Lecretia Searles. Her right to be given assistance to end an unbearable existence is declared to be subject to the Crimes Act. And we now understand that she heard the disappointing news just a few hours before she died.

But the debate she has stirred up is clearly going to continue. There has been huge coverage in the public news media. The End-of-Life-Choice petition is circulating and will be presented to Parliament in a few weeks. And the leader of the ACT party has announced he will draft a private member's bill to go into the Parliamentary ballot box and take its chances of being debated in the context of a conscience vote.

It seems a long road ahead for those of us for whom the issues might become quite sharp and real in the coming months or years. But at least the journey is beginning again.

Goodbye, Lecretia!

I have just head that Lecretia Seales died of natural causes a few hours ago. I feel personally and intensely bereaved by the loss of a lady I never met. 

Her bold approach to the High Court for a declaratory judgment that her general physician should be able to give her the means to end her life when she chose will now have no relevance for her. 

She didn't die for a "Cause". She just died. Indeed, she never said that she would necessarily take steps to end her own life. But she argued, persuasively, that if she were in intolerable suffering, she should have that right.

Now she is gone and her argument is ended. But perhaps the judgment that is yet to be delivered may drive a wedge into implacable parliamentary resistance to even discussing the matter.  

Right to Die?

A stunning piece appeared in the Kapiti Independent News today. Former Presbyterian Moderator John Murray wrote it and while his own view is unambiguous, he picks up the terrible irony of a hearing in a court used to judging alleged criminals rather than sensing the terrible truth as it affects a clearly innocent woman.

As last Monday approached I felt that all that would be said in the three or four days would not reveal anything that we did not already know. John, who sat in the public gallery, seems to have found that. But even that recital of what we have heard before has obviously moved him.   

He pleads that we engage seriously in the kind of informed debate that our parliamentarians are refusing to have on our behalf. I'm for that... 

Lift the Liquor Bans?

So the “Super City” of Auckland is going to review all its Liquor Ban areas. There's talk of lifting a substantial number of them.

It’s not long since we had to move heaven and earth to get alcohol banned in certain streets and parks and foreshores where the abuse of liquor was a public disgrace. Much of this kind of behaviour has been reduced where bans have been enforced. And we have a better regulatory environment for them now.

But perhaps the new rules came down rather too heavily and created a whole lot of LB areas where no demonstrable need existed. Maybe there was the kind of knee-jerk over-reaction with which so many social regulations are put in place. Certainly, I have a lot of sympathy with those who suddenly found that their accustomed picnic spot could no longer allow them a glass of wine with their lunch.

But I hope that the current relaxation in the use of liquor bans in appropriate public areas will not throw open the doors to the kind of behaviour that we used to see in the Bay of Islands. 

Robin Hood Budget?

The National-led Government proposes to increase entry and exit charges at the country’s borders and is removing the $1000 gift to every worker enrolling in KiwiSaver. They could have used these two moves to achieve the long-promises surplus in this year.

But in this week's Budget the Government has not done that. Rather than offer the first suplus for nine years, they plan to increase spending on the poorest of our families. It looks like a neat Robin Hood principle: take a little from those who can afford it, and give it to those who are most at risk in our society.

But their motives are not unmixed. Our economy-led conservative Government is realising that investing in the 600 children a year who come to the attention of youth services will have a payoff. Normally half of these youngsters will end up as adults in prison, costing anything from $300,000 to $1 million each in their lifetimes. If an “investment” at this time can reduce this long-term cost, it makes economic sense. It's a fascinating move in a very conservative budget.

Question: Does the Government get credit for compassion for the poor, or merely for sensible budgeting. Either way, I guess, it has to be a good plan and we need to see more of that kind of thinking from those we trust to steer our country through these challenging times.

It was a Happy Double 80th!

We’re so grateful to all who contributed to our combined 80th birthday party. Not least of all is the group that was least represented at the event: the medical people in Paihia, Whangarei, Auckland and Takapuna who are persevering with keeping Dave going when his realism tended to overtake his optimism since he got the cancer diagnosis thirteen years ago - there were no plans for an 80th birthday then.

Family

Last Saturday, 16th May. saw huge and unexpected attendances from among the wider family with people travelling from all over to what Bev and I had thought was going to be a fairly modest, local event. We expected that we’d see our Kiwi grandchildren. But we were blown away that Emma was able to make a surprise visit from Sydney. All three spoke assuredly and amusingly. However, new great grandbaby Cohen David made not the slightest noise the whole time, capturing all hearts in a different way. We had a very special family dinner for twenty in the dining room where the younger generation at a table of their own obviously enjoyed themselves. (We were delighted that the Thomas clan also took the opportunity to have one of their famed get-togethers later during the evening).

Village

Several of Bev’s twice-a-week Indoor Bowling friends were there. In fact, as a guest list expanded to include different groups, we received hardly any apologies at all! It was also very special to have the barbershop chorus and quartette along. These mostly very average singers have given us a very special experience as we have been settling into a new way of life. And it was a good rehearsal for a major performance we are doing at Centrestage Theatre next week for Age Concern’s free concert for oldies — we’ll probably be singing to some who are much younger than we are!

Speakers

It was fun to be reminded of some of the experiences that we ourselves have recalled from time to time. It was fascinating to be told of events that had completely passed from our minds over the years. We appreciated comments on our contribution here in the last year or so. And it was moving and humbling to hear Keith Rowe’s summation of the contribution we had made in church and community over the years. I think I said afterwards that it was a bit like being at one’s own funeral! It was a very special time.

Staff

We were all really impressed with how the Village staff and facilities met our needs for this event. Inconvenience to other residents seemed to be minimal and no requests were too hard to meet. There was plenty of room for everyone to sit at tables but chairs were easily drawn together at one end for the obligatory slideshow on a giant screen.

Chef Amanah and the kitchen staff prepared beautiful and appropriate snacks for the afternoon. But they also produced casual lunches for a few and a big dinner for twenty family in the evening as well as their regular catering for seventy residents in the Serviced Apartments. Amanah is keen to do more of this kind of catering and we can certainly recommend her.

Programme

We had half an hour of informal time, then refreshments and some speeches. The Chorus sang a couple of numbers and we re-assembled to view the Golden Wedding slides, this time with commentary from Dave. We cut the cake that Joan carried on her knees all the way from Dunedin and our minister Robyn sang a moving blessing. The Chorus closed the afternoon with the Irish Blessing.

People said they appreciated the balance of the afternoon’s programme and of course Christine did an absolutely splendid job of keeping it all on track. Moving into a more comfortable phase of her own journey with cancer, she took time off work and spared no effort to see that everything went smoothly. So she was our number one guest at Dave’s  birthday dinner on 20th; it was a neat way to bring our 80th celebrations to an end.

Thanks

We didn’t manage to speak to everyone personally last Saturday. So this is an appreciation of all that was done for us and said to us over the last few days—and years. To have such friends, to be held in such high regard and to be able to move forward with each other, is as much as anyone can possibly ask.

Our thanks and love to all

Bev and Dave Mullan

A change of heart

It must have taken some political will for the Government to decide to expand the very minimal tax on capital gain from house properties re-sold within a short time. A serious capital gains tax has been a principle that they have consistently refused to entertain. Even the Labour Opposition left it out of their last election manifesto!

But times change, and I have to have some respect for leaders who have become able to re-think decisions and policies that have become out of date. Even if the effect of the change is not likely to be very significant.

I guess it's my hope that the lack of consideration of End of Life Choice will also be something that parliamentarians will re-visit. I fear that particular cause doesn't carry the kind of economic pressure that is coming from the overheated Auckland housing market. But Lecretia Seales' application to the High Court on Monday 25th (See 9th May) is raising public awareness, The moment for a change of thinking may be approaching.