Tuesday, December 29, 2015

My Journey, My Way

Image result for pills

Throughout my interesting journey with prostate cancer the greatest inconvenience has been the hot flushes caused by the medication. I reckon I've had about 38,000 of them.

 When I first went onto Zoladex we discussed the possibility of another prescription to control these side effects. I considered the new set of likely side effects and declined this. I've managed the dramatic changes in temperature pretty well with three fans in strategic places around the home. And also with a fascinating technique called "the cooling breath" practised by America's First Nation people.

Last interview, my consultant offered a new product which he thought might help and I've been taking it for nearly three weeks. It's true I have a somewhat reduced number of daytime "hotties" but I've also had long periods of unaccustomed shivering with cold. And this is right in the middle of summer! And I am having to push myself to concentrate on anything as simple as reading a book.

I think I'm not going to persevere with this stuff very long. This is "My journey, My way".  I can take it or leave it. And that's how I want my life to end, too - My Way.

Let's get the law changed.

Wednesday, December 23, 2015

Argument weak? Shout lies more loudly!

Ken Orr, of the NZ Right to Life group, yesterday issued a new media release that I find deeply offensive.

He claims that those of us who support anything called Physician Assisted Dying or Voluntary Euthanasia are in fact proposing that suicide pills be issued to all 70 year olds. He has obviously not read the suggested Bill.

Part of my submission to the Committee on this issue has to do with encouraging them to concentrate on the proposal, not on twisted, perverted, imagined outcomes.

My predecessor at the Dunedin Methodist Mission, in the 1950s had regular "Wayside Pulpit" posters outside the Mission.  One that was still remembered by a member of my staff in the 1970s, was "Mud Slung is Ground Lost"...

Let's have a debate by all means. But, please, let's stick to the issues.

Tuesday, December 22, 2015

“You’ll probably die of something else”

I've updated this post up from two years ago, as its querky humour may help us focus on the urgent issue of making positive submissions to the Parliamentary Committee on Health.

You’ll probably die of something else
Again and again over the years since I was diagnosed with prostate cancer, experts and knowledgeable amateurs have assured me that it’s not all that bad. I will, they’ve told me, died of something else. I’m sure these Job’s comforters are partly right. But I’m also sure that they may not have thought much about the alternative deaths they so cheerfully offer me. Here are a few:
“You’ll probably get run over by a bus.”
But, wait a moment. The drugs I’m on tend to mess up my balance so that I am far more likely to fall under a passing bus than the average person. Buses are downright dangerous but, let’s face it, it’s the cancer that would be the real cause.
“You could have a heart attack.”
Well, yes, that’s a natural born killer for men. But have you seen how both cancer and the medications you take for it increase your risk of having a fatal heart attack. The death certificate may say it was a heart attack but it was really the cancer.
“You could die of overweight”.
True, and I am carrying more weight than I did. But it’s the cancer medications that have put weight on me, all down the front in unaccustomed places. It’s actually cancer that’s caused the weight problem.
“You’ll just die of old age”.
Yeah, er Nah. What is old age except the failure of systems because something has gone wrong with them? It’s called “natural causes” but in my case actually cancer is a natural cause and should take the blame.
“You might die in prison after being convicted of murder”.
Yep, that could happen. But it would probably be because I beat up some na├»ve nay-sayer who was trying to tell me that that I wasn’t going to die of prostate cancer.

Actually, there could be another way I could die. It would still be a prostate cancer death. But it would probably be called something like Physician Assisted Death. After saying goodbye to family and friends, I could receive a simple injection and become unconscious in moments and dead in minutes. If I have to face the choice between inevitable death from a long drawn out process involving suffering and unbearable pain or a simple injection to end it all, I think that’s what I would do. I think that’s what many people would like to do. Right now, we don't have the choice. 

That’s why we need to send submissions to the Parliamentary Health Committee to recommend a change in the law. Please, let us have the CHOICE.

Monday, December 21, 2015

Matt Vickers, husband of Lecretia Seales, has just loaded a very moving video appeal onto Facebook.  I am not a Facebook kind of person, but I have viewed the short piece and have written again to the people who took a look at my draft submission a few days ago.

This is what I've just said in this letter:
With my PSA doubling time over the last ten months being 3.8 months, this issue is becoming a very personal thing for me. It’s no longer just a matter of something I see as being important for everyone else in a mature society. I could well be painfully affected by Parliamentary failure of nerve and the lamentable lack of positive support for change. I encourage you to take some time to write something of your own thoughts or put your name to someone else’s submission. This is not a time for hanging back and figuring it will all work out OK in the end. This process does not work like that.  A full explanation of the procedure for making a submission is set out here:  http://lecretia.org/you-can-help/  

Matt's video can be seen here: do take time to check it out.

Where's it gone?

I've just popped onto the Parliamentary Health Committee's website to view my submission which I sent in last week. Lo and behold, the published list is only complete up to 9th Dec.

With only six weeks until submissions close, it doesn't look good that the office is running a couple of weeks behind in getting them into the public domain.

Furthermore, a simple request I made in connection with the submissions process remains unanswered.

Lecretia, Herald New Zealander of the Year

Lecretia Seales. Photo / Supplied 

I am absolutely delighted that Lecretia Seales has been named the Herald's New Zealander of the year.
"She was brave and inspiring, sharing something as personal and private as her death for the advancement of a human right"

If the Parliamentary Committee comes out in support of submissions such as mine, it will be due in large measure to her.

If nothing changes in the next year or two and I have to endure a painful, drawn-out death, I don't think I would have what it took for her to do what she did.

Sunday, December 20, 2015

My Submission

Some months ago, I wrote here -
Members of Parliament, hear me: I have terminal prostate cancer.... I believe it is a human right for me choose to die a dignified, planned death when I feel the time is right. Make it legal!

Well, after a lot of work, my submission on Physician Assisted Dying has gone off to the Parliamentary Health Committee. I am supporting legislation to permit choice of some form of assisted dying in New Zealand. Having been active in pastoral care of people in the last stages of their life many times I have had some experience of some very harrowing and undignified deaths, I have a little first-hand knowledge of the issue.

However, the intensity of my feeling arises as much out of the possibility of having such a bad death myself. Of course, everyone with prostate cancer is told “But you probably won’t die of it”. See here for my half-humorous commentary on that theory. But, at my age, and with my PSA velocity, I need to be aware of the prospect of a somewhat unpleasant death.

So I have produced a substantial submission. There’s not much new ground in my argument. I think that most of it has already been said by other people. But I have tried to set out what I have come to feel about the negative personal and theological implications of deaths that have been punishing and cruel. In my own case, I feel I should not have to suffer when palliative care is not able to take the pain from me. What some sensitive medical people are now calling “ultimate palliation” should be available to me to bring about the end of an intolerable existence, should that occur. Such action must be at my request, and in the context of proper precautions and reviews. But I need to have the choice. 

No palliation that does not reach out to this extent satisfies my understanding of the compassion of Jesus. To stop short of properly assisted death when untreatable pain has reduced living to mere existence is to disrespect one of the central tenets of modern medicine. It's found on the wall of every hospital these days: the wishes and needs of the patient must be taken into account in all treatment. 

I submit that it's time we followed that principle to its logical conclusion. 

But the Parliamentary Committee on Health is receiving a large number of submissions from those who disagree with my position. Some offer the most bizarre arguments, based on assumptions that are not part of any responsibly drawn up proposal. The Committee needs to hear from more of the silent majority who appear to support change in the law. Just a simple letter with your name and address will do. If you can include a personal experience of a bad death, that would add weight to your contribution. But just getting something on paper will strengthen this vital cause. 

Monday, December 14, 2015

Submission time!

A palliative care patient
14 Dec
I've at last made a start on my submission and sent a draft to a few friends, many of whom have offered encouraging comments. With a bit more work it should go off today or tomorrow.

As I said a few days ago, it's hard to find anything new to say, especially when people on both sides of the discussion hold their beliefs very firmly. But I guess what's important is the individual and personal nature of a submission and I think mind does that something of that quality about it.

I have asked to present it in person but that may depend on whether or not the Committee is able to hold hearings in Auckland as well as Wellington. 

5 Dec
I've been trying to follow the Voluntary Euthanasia debate while we've been travelling around these last two weeks. One of the very impressive crusades is being conducted by famous Australian broadcaster Andrew Denton in ABC's Earshot series

I plan to make a submission to the Parliamentary Select Committee on Health but it's very hard to say anything that hasn't been said before. And there are so many arguments on both sides of the issue. But I made a start on one or two occasions while the G-GS (see 23 Nov) was asleep at Blenheim and a first draft is beginning to shape up.

A difficulty for me in all this is that I keep thinking of more light-hearted ways of expressing my concerns about this very serious topic. For instance, I am not at all sure if the effect of my submission will be strengthened or diminished by an ending like this:

'All through my journey with hormone treatment, friends—becoming aware of my diagnosis—have said, “Dave, you’re looking great.”  They haven’t realised that medication has filled out my face (not to mention other parts of my anatomy!) so of course I look good. I’m not unduly vain, and I may not be as gorgeously cuddly and rounded as my first greatgrandson who arrived this year but I’ve been grateful to “look good”. Recalling the terribly gaunt, emaciated faces of cancer patients in the final stages of long drawn-out deaths, what I ask of you now is that when my death comes, perhaps a little prematurely, people may be able to look at my body and say, “Gee, Dave, you’re looking great”.'

Tuesday, December 1, 2015

Another Quarterly Review

1 December
Well, today we met a different oncology consultant and had a really thorough talk through my situation. He's not particularly committed to PSA measurements and did not feel that Abiraterone was indicated for anyone in my present condition.

His over-arching concern was "How does the patient feel". That approach jelled with my own view. On that criterion there would be very little to discuss in my case - I still seem to be completely lacking any symptoms of cancer.

My Doubling Time for PSA over the last year appears to be about four months but his calculation suggested six months. That's right on the border between "This is serious" and "Well let's watch and wait for a bit longer". Being the patient and not the expert and always on the side of doing as little as possible, I was happy that we opted to do nothing dramatic for another three months.

We will add Cyproterone to my treatment - it's another anti-androgen and might help the slow the cancer's growth. And I will go onto Vitamin D for my bones. We have put PSA testing back to once a quarter but will do a CT scan next time round. I enquired about the possibility of contributing to another drug trial and found that he's very keen on research and will let me know if anything appropriate comes along.

All in all, an encouraging interview.  I'll be talking through it all with my GP tomorrow when I have my quarterly Zoladex implant. I think I should be getting another Eclasta infusion, too. Gotta keep those bones in good shape!

30 November
I had my bone scan earlier in the week and a quick look at the monitor suggested that there's more activity in more of my spine than last year. Today I got my quarterly PSA result from yesterday's test. Actually, I have had monthly PSA for the last quarter, as the dramatic rise in the first half of this year seemed to indicate the need for closer monitoring.

As it has turned out, the rise is only about 4% for the month, though the doubling rate for the year is 3.7 months. That's high enough to be a concern but most of it was in the first half of the year when there was a dramatic and massive increase.

So I think we will go to the consultation on Tuesday prepared to agree that no major action is appropriate at this time - unless there's a move to try a further burst of targeted radiation in my spine. I guess my agreement will depend on how targeted it might be ....  Well, Tuesday will tell...

Meanwhile there are lots of things to do. And lots of sings to do - our Barbershop Chorus and Male Quartet  have several appointments between now and Christmas. And I had a bit of excitement on Community Patrol yesterday with a distressed dog locked in an airless car. It was amazing how long it took to get action about it. And how many people said it wasn't their department! Onlookers were ready to smash a window when the owner finally turned up. And we didn't tell anyone we had a hammer in the patrol car... Ah well, it all added to the interest of life for the day....