Moving along some more

We've now done the MRI which I believe showed nothing untoward in my right ear which went into low gear when we were on a cruise last January.

We have had a thoroughly pleasant interview with our Rad/Oncologist and we have agreed to go on a short course of radiation therapy, starting this coming week. If it's no worse than 2014, I guess I will cope with it OK.

But my tests this week aren't so great. My blood sugar is right up in the diabetic range and seems not to have responded to Metformin at all. The latter, however, made a huge impression on my digestion as reported earlier. 

My PSA shows another increase to 85 - not in itself a massive rise but in the context of the most expensive drug known to Prostate Cancer patients somebody needs to ask the question I asked before we started on it: When is the cost/benefit for a man of 83 simply not justifiable?

I have been getting reasonable pain control from a careful diet of paracetamol and if the radiotherapy is effective I may not need even that for some months. But I am increasingly tired and glad to have given up some major responsibilities in recent week. 

So what is there to complain about? Only the disappointing attitude of the Hearers to submissions on the End-of-Life Choice Bill the other day. The Chair seemed to want to argue with the submitters (on our side, anyway) rather than listen to them. Not a good day for Democracy yesterday.

Oh, the technology around the PSA

After a year or two of delays my General Practitioner practice has opened up Patient Portal for me, so I can go to the internet and view my test results. This big step in patient information should have saved a lot of time for both him and me in delivering my monthly test results.

However, for two months, nothing has appeared in my "lab test results". This is because of another great step in technology. The local laboratory office has computerised themselves with laptops and printers in every booth. Now I can't just pop my test request into a box at reception. I now have to show a special card, take another card from a box, scan that and then leave both until I am called. In the test room, the operator has to scan the cards again to bring up my details, tap in some bits of information and print labels for the phials.

It was a lot easier when I just handed in my test request. Either way, she still has to take samples of my blood. And within a short time the simple-minded report at the high tech Patient Portal would have displayed Nov 2017 PSA 39 VERY HIGH.

At least it would have, if the system had been told that copies of reports had to go to my GP. But apparently that insignificant piece of information had been overlooked. So I have had an hour on the phone to various people today trying to get that corrected.

And the system's analysis that my PSA of 39 is VERY HIGH takes no account of the fact that six months ago it was doubling in two months and would have been heading for 200 so by now. 39 is actually a reduction over the last couple of months. Thank you, Pharmac NZ, for contributing $4326.19 a month for Abiraterone which does seem to be keeping me going.

Bits and Pieces

Since Vodafone disinherited my long-standing email address this blogger has been struggling to get on line again...

Meanwhile, we had a great two weeks away with family in Upper Hutt and Blenheim and enjoyed World of Wearable Art in Wellington. Since we got home the TV has blown up and we have let the Forester go and are settling down to life with the five year old Nissan Leaf which is a great pleasure to drive as well as a useful contribution to the environment - and, let's face it, extravagantly cheap to run.

I've had another monthly test result and my PSA is steady at 57 or so and I am having no major side effects with Abiraterone so it seems to be doing what it is supposed to. Off to Med Onc again in a few days... Nothing is forever, but for now, our quality of life is pretty good and I am applying myself to some useful projects - helping one of our residents to get access to an online audience about her remarkable experience with treating Parkinson's Disease... tidying up an inventory of stuff owned (or thought to be owned!) by our Residents' Committee... planning more writing on End of Life Choice - now that a new Parliament is (almost!) in place and David Seymour's Bill will have its first reading next year...

I see my post of 12 September was a bit critical of Simon "Turkey" O'Connor and the report of his earnest but fatally flawed Parliamentary Health Committee. To not make a distinction between suicide and voluntary euthanasia is unbelievable. What a waste of time and effort. I was very gentle compared with what some others are saying about O'Connor - one person even suggested this lack of intellectual integrity presages the end of his parliamentary career. However, it does not necessarily follow that his Committee will be designated to consider the Bill if it passes the first reading. One would hope for a better, fairer hearing next time - even we all have to do make our submissions again.

The MCRPC report

   Drove the Electric Blue over to Medical Oncology at Greenlane today. Quite a big trip for all three of us, but a short fast charge and a hamburger at McDonalds set us all up for a lengthy, leisurely return home via Sylvia Park shopping centre and then along the best waterfront drive in the world on a really gorgeous day.
   Once again, we are amazed at the professionalism of the consultants we meet. Their blend of technical competence and personal empathy impresses us every time. This one had done her homework thoroughly: she was even aware of my struggles with my conscience over the decision to go onto Abiraterone and she had a printed copy of notes I optimistically emailed to the staff secretary only last night.
   We had a really helpful conversation as she went over my few concerns and we discussed changes in a couple of meds. We are going try a different steroid instead of Prednisol and she has agreed to my suggestion that we reduce the amount of anti-depressant we use to control the incessant hot flushes that were so much a part of my life up until a couple of years ago. There's no way I would want to return to that lifestyle but Venlafaxine  seems to be bringing some other unwanted side effects.
   For the first time in fifteen years my weight is down a little, with no apparent explanation. Most of the meds would be more likely to add weight than take it off. But my PSA is pretty stable at 56, though that is also just about as high as it has ever been.
   However, if we made the decision on Abiraterone for the sake of quality of life there's no absolutely doubt that that objective has been achieved. It's being a terrific year.

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!

The Ca Pros Report

After nearly a year of stable PSA at around 25 - 28, in December it shot up to 48, so my March test was anticipated with a good deal of interest. Done a few days ago, this one was 50 - almost stable for another three month period. It's very strange. Just as well that it is always only a guide to what is going on rather than a precise measure.
The same week I suffered the three monthly Zoladex implant, with the aid of half a tube of Emla cream to deaden the pain. Then last Friday I did the annual scintogram. It was this scan that three years ago showed that the cancer had spread to my spine. For the last couple of years that spot has remained pretty constant.
This time, however, I have two new hotspots in my elbows. Of course the official view and any consideration of what might be done next won't be known until I have another consult with Medical Oncology. If they don't call me up in the next week or two I will give them a bit of a prompt. Apart from anything else, I need another prescription for the meds which have given such an improved quality of life over the last year or so.
Meanwhile, we've been getting on with our very busy lives around here. And just had a great weekend away at Paihia, leading worship and visiting friends and generally relaxing. Oh, yes, and visiting our old home which is being dramatically extended out towards the road frontage. Very interesting.

Another trip to Med Onc

Another quarterly appointment...  Another trip across the city, and the 7am traffic report on the Northern Motorway was not encouraging. Another routine drag over the Bridge... Another Consultation with the dedicated specialists at Medical Oncology... But it was not quite routine. We had another change of consultant. And there was a little surprise to come.

I had to report a great increase in quality of life since the new meds early this year and that the side effects of these are quite manageable. My PSA had remained almost static for nearly four months. I commented that I’d had some weeks of a little more back pain than usual. My back has been a problem for half my life so we hadn’t paid a lot of attention to it. But Simon ran his fingers down my spine and when he got to L5 I jumped. No doubt about where the pain was coming from now. And a review of last month’s bone scan shows that the L5 and S1 vertebrae, the fundamental joint of the lower spine, are both now involved with the cancer.

So, another step on an interesting and challenging journey. It looks like I’ll be using some more consistent doses of Panadol from now on. No medication changes are being considered at this stage. It’s just a case of quarterly tests and watching and waiting while we get on with life. Plenty of that to do around here!

The Ca Pros Report

My latest two-monthly PSA is up about 15% on the last one. But, considered over four months, the rate of increase is barely significant - a huge relief from the dramatic climbs of a year ago.

Other tests seem to be OK but a bone scan yesterday, sneaked onto my phone camera from the operator's monitor, seems to show quite a lot more sparkly stuff than a year ago. We won't know much about that until my next consultation, at present not even scheduled. But what we don't know doesn't need to hold us back at the moment.

And the trying side effects of hot flushes and emotional discomfort have been greatly reduced. More and more I am doing all kinds of things that have been difficult or impossible for many years.

PSA much the same...

When we saw my consultant a few weeks ago he wanted to step up our routine tests to two-monthly. He was concerned about the effect of the heavy medication on my liver. But I suggested we continue with three monthly checks and that was agreed. With three-monthly implants and consultations I felt it would keep life simple if the tests continued on that basis, too.

Well, over the last couple of weeks I have been wondering how it was all going. I wasn't overly worried, but having been doing PSA tests every month I was a little curious as to how things were going.  So last week I presented myself for the three-month tests at just two months. The girl doing the job queried the order and I said airily, "Oh, we've decided to do it every two months" and she went ahead. 

My GP's nurse kindly looked up the scores for me next day.  PSA still 24, still up, but almost exactly static for the third month in a row. And my liver, she said, was "great". All very encouraging....

The Report

We had our three monthly consultation today, a month behind schedule, but with the advantage of an extra PSA test sneaked in.

The Cyproterone commenced in December halved my PSA in three months and the latter has stayed at that level for some further weeks. On the face of it, this fifth intervention since I got the diagnosis has given us several more months of quality lifespan. The cancer itself is still not making itself felt, and some of the side effects I've been experiencing have been successfully reduced.

All in all, a very satisfactory prospect, with the huge increases of last year stopped and even reduced for a time.  Cyproterone could be increased in strength if my PSA starts to climb steeply again.

However, the combined medications are likely to have some effect on my liver sooner or later and we will continue to monitor this regularly. And ongoing Zoladex could undermine my general health and fitness. In a period in which I have just lost a couple of kgs (due to a really bad lurgy?) that's something that I can see I have to continue to work on.

But the overall picture seems to be of rather better prospects than we were facing three years ago.

The Ca Pros Report

I had my quarterly Zoladex implant today. It's a whacking big needle and is no fun for the tum - but at least it's done for another three months. And, although it's been losing ground against a rising PSA until recently, Zoladex is obviously doing me a lot of good.

Having restrained myself from taking sneak peeks at my PSA levels for the three months since I started on Cyproterone, I did a full test today. My GP phoned tonight with the result: it is 24, exactly half of the last reading.

I was last at 24 several months ago, so the extra medication certainly seems to have given me some additional time with great quality of life.

For a full twelve-month period my doubling rate is still a bit over five months which is fairly high. But, hey, we're pretty thrilled with the downturn...

Another surprise was that my blood sugar level is not as high as it has been for years - I think I should have remembered that Cyproterone, while prescribed for cancer, has been known to have that effect.  All in all, a pretty good report and a long way from the rather gloomy prognosis of three years ago.

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. 

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....

Hanging in there with prostate cancer

The second of my regular monthly PSA tests shows 24% increase on last month but the average doubling time since March is still about 3.6 months. The slowdown since the horrific jump earlier in the year seems to be continuing.

It's about a year since I had the small dose of radiation on my lower spine and my PSA is now well above what it was when that was done. It looks as if the nett effect of the radiation on my PSA's progress is to knock it back for about nine months. That has to be a good result, considering the quality of life I have been enjoying over that year. My worst discomfort is still being caused by the medications, not the disease. After some 14 years, that's pretty good.

So life is continuing on its busy way. The book of Family Budgeting history is now online and I am starting some slow work on a print copy in case there is enough interest to justify a modest printrun. The Barbershop Chorus and especially the quartet is developing some very satisfying results and both of us have been contributing quite a bit to local church life as well as making our presence felt in the 360-strong Village community. Bev's set up a proper system of some mysterious nature for the indoor bowls group and I've coordinated a review of the audio system and its operation. I've done three CP patrols in the last few weeks and produced some good newsletters and a recruitment handbill. At home I've upholstered a rather worn dining chair and converted several hundred old colour slides for computer viewing and fitted a pair of novel but dubiously legal reading lights above our bed. But we've also been getting out and about a good deal, seeing a few good shows locally, doing some interesting walks and exploring some new corners of the region. Gosh, this is beginning to look like our annual newsletter - perhaps we'll be too busy to do one this year!

Delayed Abiraterone and a Bump on the Floor

29 Sept
I had the first of the monthly PSA tests last week. Not quite a month, but near enough, and the results today show the smallest increase ever over any previous reading. My doubling rate since March is now moving back out to 3.6 months. Still pretty serious, but a lot more relaxing than the two month rate reported three weeks ago (below).

PSA readings normally bounce around a bit, but this is a remarkable slowdown - the rollercoaster of prostate cancer... Meantime we're getting on with life and enjoying the ride, the village and the singing. Oh, yes, especially the singing; our quartet is accomplishing things we thought quite beyond us...


9 Sept
Yesterday's appointment reviewed my history (not to mention my views!) and we agreed that until I exhibited clear signs of the cancer, it would be inappropriate to commence Abiraterone.

Although my PSA doubling time for the past five months has been around two months - pretty high - we are going to watch it month by month and look for other clear symptoms of the cancer. So, technically, I am still classed as Castrate-Resistant but Unsymptomatic. That's not at all uncomfortable for me and, as usual, Bev and I are getting on with life.

After that, "getting on with life" meant popping into another hospital on the way home, to call on a Village friend who's had surgery. It was very hot in the ward - I thought it was just me having a hot flush! We'd been standing talking for some time when Bev tried to comment to me about the heat and then collapsed onto the floor with a huge bang.

Now,  there are advantages with collapsing in hospital. A dozen people were there in a moment and she was scooped up onto a chair and then onto a mobile bed and whisked off to Emergency. By then she was fine, thanks very much.

But then the "Protocol" clicked into place.  She was written up on three sets of forms, wired up in a dozen places, given her very own national health information number (for the first time), given all kinds of tests and scans by various initials. Finally, with no obvious problems in sight, and after some pushing on her part, she was allowed to go home. She's a bit sore here and there but is otherwise fine, for which we're both very grateful. But it was a long, long day...

So, back to the routine and the ordinary...

More ups and downs of PSA doubling times

Today's appointment at Medical Oncology, at my suggestion, has been postponed. There being - unprecedentedly! - no significant change in my PSA for the last month, there wouldn't have been much to talk about. Up or down, another month may give us a better picture.

But I appreciate that doubling in the last three months is still a pretty steep increase. Not as steep as the two months of June/July, but still steep. So I am probably just delaying the inevitable. The white-coated ones really would like me to accept the government's offer of their fancy new drug. All my friends say "Of course you should do it." Even my very sympathetic GP, when discussing the prospect of 4.6 extra months of life in exchange for lowered quality of life from the drugs, wondered out loud:  "Well, you never know; a cure might be found in that 4.6 months!".  Now that's clutching at straws....

Right now my quality of life is very good and I am reluctant to submit it to the massive list of possible side effects of a very heavy drug regime in the hope of squeezing out a few more months at the end.

Ups and Downs of PSADT

My PSA doubling time rocked up to two months for the last three monthly readings but, last Friday, it went down to zero for the month. Quarterly trends are no doubt more reliable than one- month checks. But this is a big downwards shift for which we are all pretty grateful around here.

And, while I'm on-line, the Vol Euthansia Society has just sent me this link to a marvellous parody of the Eminem and Rhianna number Love the Way you Lie by Zdoggmd. It's called Ain't the Way to Die, and - if you can just follow the words - picks up on so many of the issues around end of life choice. A wonderful piece of work from an inspired medical team.

Oh, heck, here are the words for you. But do go and see the clip!

Based on “Love The Way You Lie” by Eminem and Rihanna

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s not right because this ain’t the way to die, ain’t the way to die
Patient:
I can’t tell you what I really want
You can only guess what it feels like
And right now it’s a steel knife in my windpipe
I can’t breathe but ya still fight ‘cause ya can fight
Long as the wrong’s done right—protocol’s tight
High off of drugs, try to sedate
I’m like a pincushion, I hate it, the more I suffer
I suffocate
And right before I’m about to die, you resuscitate me
You think you’ve saved me, and I hate it, wait…
Let me go, I’m leaving you—no I ain’t
Tube is out, you put it right back, here we go again
It’s so insane, ’cause though you think it’s good, I’m so in pain
I’m more machine than man now, I’m Anakin
But no advanced directive, I feel so ashamed
And, crap, who’s that nurse? I don’t even know her name
You lay hands on me, to prolong my life again
I guess you must think that this is livin’…
Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die
Doctor:
You ever love somebody so much, you can barely see when you with ‘em
That they, lay sick and dying but you just don’t wanna let ‘em
Be at peace cause you miss ‘em already and they ain’t gone
Beep beep, the ventilator alarms
I swore I’d never harm ‘em, never do nothing to hurt ‘em
Hippocratic oath primum non nocere now I’m forced just to torture ‘em
They push full code, no one knows what his wishes were
His sister heard him say once, “I don’t wanna be a vegetable”
But no one agrees in the family, his caregiver Kate
Wants him comfort care but Aunt Claire lives so far away
That her guilt eats her like cancer
So she answers, “Wait! I think he’ll wake”
Maam, you ain’t even in the state!
Palliate, relieve pain, get him home, explain
Critical care? Just hypocritical when it’s so insane
But they insist I shock his heart again so I persist
Guess that’s why they say that love is pain.

Just gonna stand there and watch me burn
End of life and all my wishes go unheard
They just prolong me and don’t ask why
It’s my right to choose the way that I should die
The way that I should die

The Ca Pros Journey takes a new turn

A few weeks ago I received schedules for a scintigram and a CT scan in May. In the light of my astonishingly low PSA in Feb I queried whether these were really necessary at this time. So my consultant agreed that she would reconsider the scan plans if a current PSA test was still encouraging. Fifteen minutes after getting her email I was in the lab giving up yet another little contribution of blood.

The results have just come through - it's up from 5 to 12 in two months. And my testosterone level is consistently up with it. That's a bit of a shocker. So a phone call to the office and, yes, we need to go ahead with these two expensive and time-consuming tests to get some kind of a picture of what's going on.

All in all, it's a bit of a disappointment after the Feb PSA being so good. But in myself I haven't felt better in a dozen years. Another cheerful piece of news is that at least one very expensive medication has just come onto Pharmac's free list. So it looks like another bunch of pills is going to be on the way in a few weeks.

The Prostate Cancer Journey Continues

17 March 2015
It was something of a formality to haul ourselves all the way across Auckland to Greenlane Clinical Centre today. We had a short meeting with our enthusiastic specialist and recounted all the things that have happened to us since our last quarterly meeting. It's been a momentous time, really, with lots of fun stuff happening and almost nothing of note on the health front.

The Aclasta infusion for my weakened bone density was dripped into my bloodstream a couple of weeks ago - another substantial gift from the taxpayers, thank you very much.

The good news of my lowered PSA means that, for the moment, we won't be considering any other cancer treatment strategy. If and when that becomes necessary, the public purse may now be able to offer funding for Aberaterone. I have been watching this particular drug with interest as it has gone through some very satisfactory trials over the last few years. It's horrendously expensive, of course.


24 Feb 2015
I did my three-monthly PSA test yesterday and the result is another drastic drop to 5. This is lower than it was when I was diagnosed twelve years ago. It would seem the radiation on my spine has done a great job on the cancer that was discovered there just a few months ago.

I will have a routine visit with my onco specialist in a couple of weeks but it really looks as if there is nothing to worry about unduly just at the present time. What a change of scenario from a year ago when we moved down here! Who could have expected to get such results from failing to get onto an international drug trial?

My bone density is down but I have been approved for free treatment with Aclasta and the first infusion will start shortly. That's probably just as well considering that my balance has been pretty shonky lately. The feet aren't always where the brain thinks they are and I took a couple of falls last month.

4 Nov 2014
When I first started this blog I wrote about the satisfaction of discovering Christine Newman's lines about not "battling" cancer but "embracing" it; I quote her again:
      To embrace my cancer is to know that my days are numbered,         that I had better get on with things in life that matter...

Apparently my comment didn't stem the tide of the expression "battling with cancer" that we still hear so much.  But that thought continues to give me a sense of proportion about what is happening within me. I am not some kind of battleground; I am a man with cancer.

And it was inspiring for me to read that Martin Crowe tweeted his returning lymphoma as his "friend and tough taskmaster".

3 Nov
Well, surprise, surprise! My PSA has actually gone down in just a couple of weeks. Possibly going off Bicalutamide is beginning to have the anticipated effect. Not a big drop but enough to put off Cyproterone for the time being.
Bone Density test yesterday was, however, no surprise. We have yet to have a formal consultation on it but it seems my bones are generally more fragile than we would like. Old age and medication probably have to share equal blame. So what do we do about it? Maybe just try not to fall over...
We visited special friends in hospital while we were over in the Big Smoke. It was a lot of navigating around unfamiliar territory and buildings but we were reminded how lucky we are compared with some...

31 Oct
Two more trips to town and a lot more time around Auckland Hospital for a one-minute burst of mysterious energy under the linear accelerator, and we have passed another therapy milestone. Not too much in the way of side effects, beyond oppressive tiredness and a bit of tummy discomfort.

But the white-coated ones are by no means through with me. I have to see the radiation specialist again in a few weeks; off to do bone density tests next week, another PSA test today for (oncologist who has already decided to put me onto Cyproterone anyway!), and another urology interview and further endocrinological tests in December. And those are just the ones I can remember...

How many specialists does it take to help me have a reasonable quality of life for another indeterminate period? None of them can cure this disease; they’re just treating the symptoms and the side effects of their treatment.

Bev and I talked a lot in the wee small hours this morning about priorities in health spending… Beyond getting some ideas for a sermon at Paihia in a couple of weeks, we had no great insights. But we realise that nothing did so much for our quality of life in the past four years as having the “half-joints” replaced in both my knees. The benefits were immediate, obvious and hugely beneficial. You can’t say the same about prostate cancer therapies…  It’s awesome chemistry and engineering and physics and we are meeting some simply wonderful people who work in the field. But at the end of the day, sooner or later, there will be an end to the day.

Of course I want that to come later rather than sooner. Of course I would like an easy ride to the end rather than a lengthy challenging journey with pain and frustration. But in these days when our country, not to mention the world, has more deprived children than ever before, I think we need to watch the elderly health budget as carefully as the calendar! And this means more serious thinking about the problem of dyseuthanasia - of interfering with the natural processes of death and prolonging life unnecessarily. In my case, I know it will be largely up to me to say: Enough!  H'm...

28 Oct
Rough trip into town today for my third session. Some "motorway incident" somewhere resulted in a 90 minute trip to Auckland Hospital instead of about half an hour. We'd allowed plenty of time and still managed a quick cuppa and bikkie courtesy of the charming volunteers from the Cancer Society. Another short burst of RT and we were heading home in under half an hour...
I'm definitely a bit seedy now, but a lovely chicken meal and a spongey pud with whipped cream has done a lot for the spirits. Wrestling with my computer's Nano Adapter has kept my mind on other things tonight. Sometimes it works and sometimes it doesn't. I hate it when that happens. But ain't that life...

27 Oct
Session Two was pretty uneventful. But a three day break for Labour Weekend has seen us relaxing pretty seriously. Our group sang out a couple of times, notably at the local Hospice, to a former Village barbershopper who's a patient there. We have some way to go with the finer points of Barbershop but we had an interesting time. And we went to a concert organised by a 1958 flatmate of Bev's, Barbara (Brazendale) Olds. She's one versatile musician and has an interesting group of ladies who have done over 100 such concerts.
All in all, the worst side effect I've noticed so far is being uncharacteristically tired... So today we watched a couple of movies and read. Tomorrow we're off to the city for RT session three...
24 Oct 
After one session of RT I am reminded of a story our solicitor told me as we sat in my posh office in the 11-story Methodist Mission building in Dunedin. He said there was a fellow who fell off the top of such a building, and as he dropped past the second floor he was heard to say, "No worries! I'm OK so far..."
That's the message from radiation therapy this morning.
23 Oct 
We dutifully rolled off into the city again today and I presented my lower spine for a short burst of "spot welding". Nothing to it, of course, and fantastic service by everyone involved, but one can't help having a slightly sinister feeling about the whole business. There'll be another tomorrow and then a break for Labour Weekend. I should be comforted that I'm not urgent enough for them to put me on the Labour Day Monday list. But three more sessions next week.

Meanwhile we are squeezing in an extra practice for our Barbershop men's quartet for a short concert on Sat night at a local church fundraiser. It will be our first performance after only a month since we first got together to give it a try. Our mixed chorus is also performing but I think that we can at least hold the music for their items...

And the little Bash car (see pic below). Well, she's created quite a hit and we've been asked to join the local Christmas Parade next month. Will do if we can get her slightly sick engine to run properly.

Hey, life is busy and interesting.

A big medical week

16 Dec

Yesterday the last in the current series of consultations confirmed the findings of last week's visits. I had the skin on my back checked for damage from the radiation. There were sensitivity, strength and capability tests around my legs and feet. With the lowered PSA, all the signs are that the cancer in my L5 vertebra has not put significant pressure on my spinal column.

We will no doubt be watching my regular PSA tests for indications of resurgence of my Gleason Grade 7 cancer. And if further radiation treatment seems to be required, we would prefer not to do that within a year. So, hopefully, I have a kind of warrant of fitness for a comfortable and medical-incident-free 2015. That's an outcome we didn't anticipate a year ago.

Thank you, Aragon and all the diagnostic benefits given to me In June and July while I was being considered for the for the ARN 509 Trial through North Shore Hospital. And Astra-Zeneca for quarterly implants of Zoladex. And the amazing NZ health care system which has spent an inordinate amount of money on this near-octogenarian over the last ten or twelve years. That's a lot to live up to, I guess. But I'm getting on with it. Life is so good.

11 Dec

Two consultations today… Ninety minutes’ drive into the city to meet again with the charming and ever-enthusiastic Frith (See 18 Sept). She was just back from an international prostate cancer experts’ junket in Portugal where there’s been interesting news of another drug trial with encouraging outcomes for men who receive chemo as the very first therapy after diagnosis. Well, that opportunity passed for me a dozen years ago.

But the good news is that the drop in my PSA during the last three months suggests that we will do nothing for another quarter. I am all in favour of doing as little as possible. We had a droll conversation about whether I should invest in much-needed glasses? (“Definitely!”), Do a $500 upgrade my video editing program? (“Why not?”) and go on a cruise? (“Well, perhaps not if you are going to take a couple of years to save up for it”). I forgot to ask about hearing aids and my ropey left knee prosthesis which is creaking ominously… But that was all pretty encouraging.

And so off to do a bit of windowshopping to fill in some time before Urology in the early afternoon at North Shore. I had nothing to complain of so there was nothing much to do there, either. We had another pleasant chat, collected a routine prescription or three, and said a final Goodbye. I won’t need to return there until, Madhu hinted a little mysteriously, I need a “bit of a plumbing job later on”. H’m… Well, if Frith is right, that won’t be for a while yet.

Considering the fairly vigorous nature of my cancer, and the absolutely regular rate of increase of my PSA for several years until October, that’s all a pretty good outcome. But we will still keep Monday’s appointment with Radiation Oncology…

8 Dec
I haven't started on this week of interviews yet but I have just now obtained my latest PSA result. It is about one-third down on the last quarterly one. 
Up until last June my PSA had been rising steadily at more than 50% increase per quarter for several years, and that's largely what prompted our move to the Village. So this is a significant trend, especially considering that we gave up bicalutamide nearly three months ago. It would seem that the targeted radiation on my spine has done some good.
I guess the discussions in the next few days will focus on whether we should start up an equivalent for the discarded bicalutamide. And no doubt some other options will be considered. But, all in all, if nothing else is done, this is an encouraging sign. It's some justification for all the time and professional skill and support lavished on us this year.

6 Dec
The other day I had my three-monthly Zoladex implant. That must be about the 40^th I’ve had since embarking on my prostate cancer journey. They cost several hundred dollars each so my bonus of extended life has come at some cost to the NZ taxpayer.

I also contributed more blood for a quarterly PSA test and some other tests which are going to be of interest this coming week. For I have appointments with three difference specialties in the next few days, each of them involving traveling into Auckland and traipsing all over the place trying to find the right offices. At least, with a bit of cajoling of the ever-sympathetic booking clerks, I have managed to get two of them on the same day – even if in different parts of the metro area.

So we will listen to the words of wisdom from another half-dozen people this week and, no doubt, have to make more decisions as to where we go with this journey from this point.

We have made one decision, pretty much unrelated. In January we are going on a two-week cruise around the bottom of New Zealand and across to Australia where we will have a further few days with family. 

Meanwhile, we are enjoying our Barbershop Chorus as we sing our way through gig after gig in our Village community and local venues. One touching moment was for our male quartet to make a hospital call on a former member who is coming to the end of a cancer journey. I’d never met him before but I naturally felt a poignant affinity with him. It was great to be able to see him perk up as he tried to sing "Riverside" along with us.

Perhaps the rest of the quartet will come and do that for me some time. How will I handle that, I wonder? I hope I can give them back as much as Ron did yesterday.