The Ca Pros Report

Nov 30 - The Last Post

With the assistance of IT guru Christine our daughter, we have been able to get this blog up again. But as far as possible I am assuming that people are moving to more personal forms of communication and I will be letting this go.

The 3 weeks since my last post have been increasingly difficult, to the point where I am now comfortably situated in the North Harbour Hospice, with Bev and Christine running to and fro for me in 3 - 7 min trips in the car. 

I have had two of three bad falls for different reasons, and at least here they are keeping me pretty much in bed.  Nominally we are talking about a respite visit to stabilise my medications, which seems to be working at last, aside from the ongoing frustratingly frequent spells of vomiting.  My weight is now way under 60kg's and I cannot move out of bed without assistance, so we are coming to another bend in the road.

Bev is holding things up at home and is perhaps our best point of contact. bevmullan@gmail.com and can be contacted through the wider family.

We had an absolutely fantastic family get together for our Diamond Anniversary. We hired a large house where the children & great grandchildren could sleep for a night or two and for Saturday afternoon and evening. For that period we had about 30 people to a meal, conversations, questions, accusations and other such fun.
The weather was absolutely brilliant, my pain level minimal and every detail was to perfection as planned. Thank you to everyone who made such an effort to get all the family together for the first time.

Those who know, my concern about the EOLC bill ... will now know that it got through parliament with a reasonable head count, but is subject to a public referendum Sept next year, so it certainly won't be around to help me, when I need it.

Greetings, also to those who have followed my other interest in nearly 600 posts.  These retirement years have been stimulated by finding topics worthy of attention, and writing on them. I hope I have given some people some things to think about in the areas of my special interests.  And I am grateful for the many who have responded to my views, via the more personal approach of email and I still have access if somewhat uncertain on my phone at davemullan@gmail.com.

Compliments of the season to everyone ... 
Signing off
Love and kindest regards
Dave Mullan 


Nov 11

Some pretty hard days recently. I now have the distinction of dry retching for several minutes at a time, even in the middle of a meal, without bring anything up. But there's plenty of wet vomiting as well, often for not the slightest discernible reason.
I've had to miss a few special occasions here in the Village lest the sight of the afternoon tea upset my system. And my weight has dropped below 60kg - about the same as when we were married 60 years ago next week.
Had my glasses tightened up ("I need these glasses to be vomit-proofed, please") because they did fall off at unpredictable but critical moments. However, when I tripped over my lazy left toe and spread myself all over the carpet a few days ago, the newly tightened glasses stayed on, cut my face in a couple of places and broke up altogether. At least Specsavers same to the rescue with an identical frame and fitted my lenses into all for only $25. And we got my face and a huge split all over the top of my toe bunged together with glue at the Takapuna Emergency centre for $18. Glue? Really? So the doctor said...
My energy, motivation and concentration are very low and fitness is rapidly deteriorating but at least we have some control over pain levels with less tendency to wake in a saturated bed from an unexpected hot and cold sweat (I hate it when that happens!)...
So, lots of reading and TV and much, much sleep at the drop of a very small hat. Three wee meals a day are keeping me going and I have at last discharged all the responsibilities I had in the Village community. I even got myself together enough for a few hours to take a service at the local church...
All in all, we are pretty much aware that the journey we began some 18 years ago is starting to wind down... And that's OK, It's been a fantastic life and both I and the body are ready to call it quits.
We're having a big family hooley in a couple of weeks for the Diamond Wedding and that will be a kind of goodbye for some of us.
And, yes, the Bill is going to pass in Parliament tomorrow afternoon... Every objection has been voted down 70 - 50 over the last few months and we hope for a similar vote for the main event.


Oct 8
Another "good" spell lately, with some semblance of control over nausea and digestion for several days. It seems to be better  to take the anti-nausea pill whether I "feel" like I need it or not...
My PSA is rising up towards 800 which probably confirms the increasing amount of pain around the skeleton generally - though most pain has subsided in just the last day or two. Pretty much on top of things today...

Sep 27
Not much to add...A couple of relatively "good" weeks followed by a surprising bout of nausea and sickness and more discussions about managing medications and so on.
Pain is beginning to be more of a problem, especially at night when ordinary painkillers cause more disturbance than comfort. It's mostly around the chest area and pretty unpleasant when I breathe, something I haven't quite learned to do without yet. We have some more experimenting to do in that area.
In the daytime the pain is more manageable but going along with it is an awful lot of sleepiness and lack of concentration. Just getting to add something to this blog has been a bit of a challenge for several days now.
But today we've had a bit of an outing to Waiwera Beach where we are planning to have the family celebration of our Diamond Wedding in a few weeks. The tide was in, so the waders, including a solitary NZ Dotterel, were pushed up the beach a bit where we could see them from the car. Rain showers came and went as they seem to have been doing for weeks now and for a moment a rainbow appeared to creep up the beach towards us. Magic.
We note that the fourth debate on the End of Life Choice Bill rolled on the other night, again with the usual speeches from the same people, but without a single one of their amendments being passed. The redoubtable Maggie ("Tea Lady") Barry was not present, having disgraced herself with some negative criticism about a nasty attack she made on Madame Chairperson at the last session. I think the last debate will be at the end of October, unless the opposition think up too many amendments for the lengthy personal votes to be fitted into the time allocated.


Sep 10
Another couple weeks of ongoing trouble with vomiting and constipation followed our last bulletin of a little optimism. But both of these problems have been severely reduced after massive changes in medication. Both our own GP and our Hospice nurse have continued to be very helpful in this process as we have struggled to find a workable and effective balance.
No trouble of those kinds for nearly a week now. Every day, we wonder if we have got over it. Every now and then we half expect to begin another bout of vomiting but day by day I seem to be getting back some sense of appetite and taste.
So now we are paying some serious attention to pain issues, with a severe problem building up in my right shoulder and arm. This probably corresponds with major mets seen on my shoulder blade at last scan. Modest painkillers are doing the job so far but probably not for ever.
My last blood tests suggested and liver and kidney functions are all OK; but blood readings are still on the anaemic side but not getting worse.

Tomorrow Parliament has the third debate on the End of Life Choice Bill. We'll be watching to see if the petty attempts by the opposition to force silly and time-consuming votes has any more effect than it has so far. At last we are beginning to be optimistic that, eventually, a workable bill will find its way into law. Not in time for me, probably, as it is likely to have to go to a referendum in 2020 for confirmation by the electorate. Oh, well, to see it passed in Parliament will be very satisfying.





Aug 20
Christine has just left us after a generous visit of nearly two weeks during which she saw the worst and best of life around here. The best was yesterday when we did a run up to Mangawhai Tavern for a stunning lunch which I really enjoyed. 
She's just left this morning  en route for Hastings to pick up Lauren and wee Maddie to go to Palmerston North for the funeral of my sister Barbara. Five years of Alzhiemer's have stolen the last part of a remarkable life but it is a kind of a relief for all concerned.
Bev and I  felt last week that my situation was too ropey to admit of another trip of that length so we will join the video link from home.  Ask me today, and I'd say of course I could make it. But, oh, how things change from day to day...
A couple of weeks ago I initiated another change in anti-nausea medication after having some upsetting times with the adjustments made by the Hospice team. Now I think I may have just about overcome nausea and sickness issues but this particular med has made the constipation worse. My choice was to deal with one problem at a time and that seems to be working at last. I have had a couple of days of almost normal eating with no trouble and am hopeful they may continue.
I've had no significant pain that can't be dealt to with paracetamol. So there's a sense of having reached a new plateau in the journey. But who knows what's around the corner. My 
Hospice Nurse has gone over all my meds today and my monthly test results seem to be pretty good, with the interesting exception that PSA is away again, rocking up to 480.

Aug 9
 Well the good times didn't last more than a couple of days. A scheduled visit to the Hospice for my first medical consultation opened up some issues with medications and we made one or two more changes. But a couple of bouts of vomiting still spoiled the rest of the week. At least the laxative is working - it's taken a long time to really take effect. I now have to cope with periodic diarrhoea of course...

The specialist encouraged me to believe that what we have been through these last eight months could be the worst discomfort that I may have to face. There is no problem with vital organs at this stage. And I have been given an assurance that I can contact Hospice 24/7 if I am having any more problems, over weekends, for instance. 

Lack of mobility and balance and growing loss of sensitivity in my feet and legs continue to testify to some of the cancer activity in my spine. But I've had only mild pain in the chest area and nothing at all like I had a year ago in the back and leg. The cancer, now quite widespread through my ribcage and spine, is a funny old disease, it seems, and since March has not warranted any heavier medication than paracetamol. And when that occurs there should be no difficulty getting urgent help. 

But it's the little things that take you down... Currently, I am feeling digestionally fragile, very tired and sleepy, and have lost a lot of weight and condition, still eating like a sparrow. Food is just no fun at all. 

I am winding up my responsibilities with the Village newsletter and sound system. The latter is still a slightly tricky issue since I put it all together a few years ago and know more about it than anyone else. I need to find a trouble-shooter, not just more operators.  

So we are pressing on, one day at a time, continuing with enough tests to keep an eye on vital functions and taking life very gently, good days and bad. Some decent weather would be an encouragement... 








Aug 5
The weekend continued without any trouble and I am hoping to settle down to a decent period of normality. Long may it last! Thanks for greetings and good wishes, as ever....


August 1
I've had a reasonable day or two. The tummy and nausea troubles seem to be settling down a bit and I am managing some degree of pain around the chest with a fairly simple regime ....  I am getting in a bit of practice with a walking stick. It looks good but not really necessary yet...


July 29 2019  
It was not a great week.
The intramuscular injections crippled my thighs for several days. The nausea problems went on like I wasn't taking anything for them.. And I continued to develop my vomiting skills. Last night when our son called I said I could even vomit if I just thought about food - and away went half of my little dinner in a flash...
Today I feel a lot better and have kept down a good porridge and 1000mg Panadol, the sun is shining, and all's right with the world. But there may be more to add later in the day. 
No, I'm still feeling reasonably OK....



July 23 2019  
Well, it was great having Bev home but my appetite and nausea still weren't with the programme. By the weekend I couldn't even keep a pill down never mind a bit of a meal. Three days of nothing to eat and nothing to deal with the cancer pain didn't do a lot for me,
So Monday we rocked off to the local health centre where three doctors and five nurses gave me 3IVs and 2IMs for temporary medications, tests, and a two and half litres of saline solution. 
Armed with new meds we staggered home and this morning we tried the new anti-nausea. It stayed down fine but breakfast didn't. I am getting pretty skilled at purposeful vomiting but this time I managed to wet my pants at the same time. That was a new experience.
So, all in all, we will try the med one more time and if lunch goes down the drain we will be in touch with the great people at the medical centre again. 
Pain is not the priority until we get the nausea under control but the next step along that route will be to have a consult with the Hospice doctor. (I got a good recommendation from his famous predecessor while we were both waiting to go on air - on opposite sides, of course  -  for the Radio NZ Panel a couple of weeks ago.)
Now I need to bake a loaf of bread. Who knows, I may even get to eat some of it in a day or two.... 

Next Day
Not a whole lot better. A tiny omelette came up last night but, so far, breakfast and lunch have stayed down today. But we are both going to miss Barbershop Chorus rehearsal this afternoon. 
The End of Life Choice Bill should come up for discussion in the House later; there's only one more Member's Bill ahead of it...

For the record I am going to use this blog to post most of the news of my adventures. I am really grateful for emails and text and Messages but individual replies are becoming a bit demanding in my present state. 


July 17 2019 
After three or so weeks of reasonably stress-free living I've had another bout of challenges. 
In the first place we decided that Bev should go to her  brother in law's funeral. He was insensible for exactly a year when he died quietly so she went off to support the family for a week. Almost immediately I was hit with another pain crisis in the upper left chest where there's a pretty strong indication of cancer. All the usual symptoms came with it and the painkillers - trouble with digestion, lack of appetite and taste, nausea, balance, anemia and extreme tiredness and lack of drive. Now I have a whole bundle of new medications to try out next time. 
Bev's back and we're getting on with things, but ever so gently!
June 21 2019  
Well, we headed off in a rental ICE (Internal Combustion Engine to you non-Electric drivers out there) for Hastings and did the trip in one day in steady rain. It was great to see the family well settled into their home and to have a couple of nights R&R on the way back home.
We coped Ok with the medical problems while away but since being home there have been some rather dramatic affairs. We obviously still have to master the medicals! 
In this time my sense of both taste and appetite have taken an unwelcome dive. These were big issues when I was withdrawing from Aberatirone in January but I have been recently been a bit floored to discover that they are actually connected with my cancer.  How did I miss that?
I'm having great support from the Hospice visiting nurses and our GPs and we're moving along. I was able to do another interview for national television today but am aware that some of the sharp edge of my communication skills is being blunted. 
And there's still a few things to do. I have recently helped some of our parishioners with some ideas about how to Read the Bible in church. I have to train a group of volunteer operators for our Village sound system. And a management's welcome decision to join with our residents in a combined newsletter will take another big chunk out of my schedule.
Latest tests suggest decreasing anaemia and blood sugar and only a modest rise of PSA to around 340. All I have go to do is live up to the tests! The mind slows and the body weakens but the spirit is OK with that...


May 31 2019  
 As my FB friends will know we had a great week with our 
daughter Christine here for our two birthdays some days ago. It was a lovely time and we were quite spoiled having her around.

There have been more GP appointments and some momentous  problems trying to deal with constipation problems made worse by the variety of medications over the withdrawal period. Hopefully, we are over all that now, and with very few pain problems, we're moving forward confidently enough to plan a road trip to Hastings to grand-daughter Lauren and her family in their new setting.  



May 10 2019
 I have just had a pleasant house-call from my Hospice Nurse and it prompted me to spend some time noting down all that has happened in the last few weeks.
It's been a rough time with a couple of significant pain events and three doctor visits, two lots of antibiotics, more painkiller prescriptions, serious anaemia, an X-ray order, Aclasta infusion, total exhaustion and goodness knows what-all.  It seems that we all underestimated the crisis involved in simply coming off Abiraterone. But the last ten days have been pretty manageable with no pain nor need for painkillers and at least now I have some serious medication if it's needed. 
And, for the first time for three or four years, my PSA has gone down. From 430 to 340. We have no idea why but, heck, we're taking it, thanks. Small mercies and all that.





Mar 26 2019

Just back from another visit with my GP.  We've agreed we were probably been a bit premature in the timing for reducing one or two of medications. I've had some discomfort during the horrific weekend of the Christchurch terror strike. And, of course, we were up at Paihia with a completely prepared order of service which needed to be adjusted quite a lot.

But I have now got a couple of things that may help if my occasional bouts of depression and weepiness increase. Happily, there's no sign of the hot flushes returning. 

I'm also stacked up on Paracetamol and Diclophenac but in the last week or so I haven't had any pain that could be connected with the cancer. Apparently it's a bit vigorous in my femur and various places around the rib cage and up and down the spine. But as long as it's not giving me pain that's OK for now. And I am moving more confidently than I have for most of the last twelve months. 

We've had two visits from Hospice and established that my preference is to die at home rather than as an in-patient. But they have an amazing array of resources and great facilities. We expect we will get involved at some stage.

TESTS :  

PSA 430, considerable anaemia evident, high blood sugar is back, probably all related to the cancer not being controlled so much. But day by day I seem to be managing OK. 

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:
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 !

The Submission 2018

Today 29 June 2018, Bev and I attended the hearing of the Justice Selection Committee of Parliament on the End-of-life Choice Bill. It was a very mixed experience, but, for those who are interested and who missed the live stream, this is the text of my submission.

Introduction

I am David S Mullan, of Red Beach, retired Methodist Presbyter, 83. I have advanced prostate cancer. I desperately support this Bill.

1.        A Very Personal Issue

Hours after an unrelated surgery I experienced the most appalling tetany spasms. I felt as if every muscle between my shoulders and knees was tugging on the edge of the incision. I could neither move nor cry out.

I duly reported these agonising episodes to the medical staff but nobody commented.

·      If that kind of pain, even in short spasms while unconscious is what I might expect when this wretched disease overtakes me, I don’t want it.

·      If something like that is what broadcaster Andrew Denton described of his father’s death, I don’t want it.

My cancer is now compressing my spinal nerves. It is affecting my legs. I am being medicated for daily pain. I can expect to be progressively paralysed and eventually made helpless. My experience with the mysterious tetany spasms leads me to believe that I may be one of the 15% of Hospice patients whose pain is simply not able to be palliated.

I had hoped that this Bill might have become Law in time for me to choose to take an organised farewell of family and friends and depart this life in some dignity. That now seems unlikely.

I may therefore decide to become another statistic among older people who are ending our lives prematurely. We are being treated with disdain by Parliament when all we ask for is some dignity and choice.

It is ironic to me that the opponents of the Bill already have their choice. But people like myself who know they are at risk of a bad death do not have choice for a dignified end. For us, this is an issue of Human Rights.

I submit that Parliament must decide that Choice for some citizens should no longer mean No Choice for others.

2.        Religious Issues

As a Christian thinker, I am troubled that some religious people say that untreated pain is in itself a transformative experience, is “good for the soul”.

That kind of religious teaching must be for their people. To apply this principle to others in a secular and democratic society is, in my view, disrespectful—and tragically wrong. So, the attempts by some submitters to hide the identity of their church are, in my view, little short of deceitful.

I am a member of the Methodist Church which has a history of being vocal on social justice issues. But it has based its views on contemporary and well-considered theological considerations. And rather than opposing change, it has usually given a lead to the community in changes for the better. Even in my lifetime it has taken action on Pacifism, Apartheid, Prison Reform, Industrial Relations, Homosexual Law Reform and the whole range of gender and Human Rights issues right up to the acceptance of LGTB people in church leadership.

So I stand in a tradition which has tried to encourage the wider community to become more liberal rather than to scold it with antiquated theologies and some “biblical” principles that were conceived in a different world.

I speak from the experience of a working lifetime in pastoral care, social work and ministry formation. I have entered into the suffering of many who have died badly. I have worked with their pastors and their frustrations. Now I face my own journey into dark places and I sense that my country does not respect my need.

And I speak from the perspective of the Christian Jesus who ministered to the needs of the marginal people of society. He put their personal needs ahead of institutional respectability and tradition.

I submit that your Committee might also sit lightly to institutional religion and give priority to charity and compassion for all people.

Kia ora tatou katoa!

  

Dave Mullan

28/101 Red Beach Rd, Red Beachn 0932

+64 9 426 7562  +6421 159 2896

Notes

Although Hon Maggie Barry, as is her wont, made quite a few speeches on her own account, in the guise of asking questions of some submitters, at the end of the my submission, when I paused for questions, her first one was "Would you like a cup of tea?" I wasn't expecting that.  I must have made some impact. We then had some discussion about the merits - or otherwise - of the report of the original Committee and properly conducted opinion polls and that was that. 

The Ca Pros Report for Jan 2018

Not a very pretty result this week. My PSA is up from 41 to 60, the highest it's been for a year or more.

However, I have to confess that somehow in the packing process for our cruise, I didn't take along my Zytiga and in spite of great cooperation from our neighbour Brian and NZ Post, I didn't have them until we'd been to Sydney and back to Dunedin. Given its previous rate of doubling, the figure of 60 seems to be entirely what one would expect for eight or so days of no medication, so no surprises. Now we're plodding on with the pills and hoping for the best. But I really should be spanked.

Just before we went away I did a fascinating interview for a Univ of Otago study on the end of life opinions of people who are terminal. The draft of our conversation has just come back and the transcriber seems to have added ("laughter") to almost every comment on some 25 pages of script. It was certainly a lot of fun. As well as opening up some areas of thinking that I needed to turn over... It is good to be able to deal with these issues in a whimsical frame of mind. May it ever be so.

And I've just had a chat with Kirsten from somewhere down south who phones me up every month or so at the expense of the supplier of Zytiga. She gives them feedback on how I seem to be coping with the stuff - it's always an interesting chat and I am impressed that the company can go to the expense of keeping in touch with people who are using its product. So far, all my experience has been very positive but I guess they won't be pleased to hear that I missed more than a week on it...

Now, the big effort is to prepare a submission for the Justice Committee on the End of Life Choice Bill which is now at the discussion stages. I brought back a major cold so life here is only slowly resuming its normal course.  In fact I think I'll now go and have a Nanna Nap for a bit...


But, first, if you're so minded, here's the info on making a submission:
Submissions on the End of Life Choice Bill can be sent to the Justice select committee, by email, letter, or online. Submissions close on February 20, 2018.

The CaPros Report

Just back from Medical Oncology. My PSA is down slightly from 57 to 43 which still seems pretty high to me. We are continuing on Abiraterone and half a dozen other things. Now we're adding in some medication for severe back pain the last six days - this is occurring in the right place but it may or may not be cancer-related. If not it will clear up in a few days... Nothing seriously depressing in all that, for which we continue to be grateful.

Afterwards we had a pleasant drive out to the airport for some free car electricity, some shopping, a trip through the Waterview Tunnel and some country driving back to home.

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!

PSA down? Really?

Well, yesterday's PSA test, exactly a month since my last one, is actually down from 60 to 56. It's not a significant change but it's better than another "three-month" doubling. That would have been pretty serious.
We have an appointment for next Tuesday and the big question of what happens then will be high on the agenda. We have a large list of issues we wish to discuss. But the gist is that we continue to be comfortable about resisting further intervention just for the sake of three months of extra life at the end... Whenever that might be.
We don't want to seem ungrateful to a benificent health system but the outrageous cost for those additional three months of life does not seem to be justified in someone of my age and relative health. If I felt a whole lot worse because of the disease I suppose I might feel differently about medicating to postpone the inevitable... But the reality is that for nearly fifteen years my quality of life has been affected only by the side effects of medication, never by any symptoms of the disease.
Abiraterone is maybe too much, too soon...

The Ca Pros Report

Off we went to Medical Oncology today and the news is not great. Our specialist was delighted to find I am still feeling so well, have no pain, and am enjoying such an active life. The bone scan a few weeks ago showed, he reckoned, nothing very significant.

But an extra PSA test I organised for myself yesterday showed a 25%  increase in only five weeks since scoring an unexpected 50. So after a year of stable PSA around 25 – 28, in just three months I have got to 60. The disease may not be showing itself in pain or disability but it is clearly becoming much more active.

We will continue with the quarterly Zoladex as the primary agent to reduce testosterone on which the cancer feeds. Now, Simon summed up our future options as: 

1. Chemotherapy - to treat my whole system with cancer-reducing medications

2. Abiraterone - to restrict even more the production of testosterone, 
    or possibly 

3. Some targeted radiation therapy to tackle identifiable cancer growths. 

    We agreed there was also:

4. Do Nothing. 

At the end of the day, any decision would be mine.

Bev and I left with four pages of information on Abiraterone — nothing new in there to anyone who’s done his research— and a plan to have a CT scan in a month and another discussion after that has come through.

So we have plenty to think about. Up to now I have been resolved that the substantial cost of Abiraterone – even if met by a generous public health system – does not justify an extra three months’ life-expectancy. 

How do I quantify another year or two of reasonably active life and an extra three months at the end against what $100,000 could do for other younger people in the health system with other less expensive needs... For someone of my age and convictions, that is a moral and ethical problem. The system seems to say it can afford to make the offer to about 1000 men a year and invites me to be one of them. 

Does that make it right?

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.

The Ca Pros Report

Just a quick update:

After about nine months of PSA flat-lined between 25 and 30, this week's two-monthly test is 40, a 25% increase. This is along the lines of the very steep increases of 2015 and a bit worrying.

However, I'm taking the long view and figuring that an increase from 25 to 40 in about ten months is really quite small!

But, I guess my oncology specialist will be wanting to see me before long...

What I said to the Enquiry

My Five Minutes Spoken Submission
to the Health Committee   4 pm 14 Oct 2016

Introduction

I am Dave Mullan, of Red Beach, retired Methodist Presbyter, 81.
I have advanced prostate cancer.

Just over a century ago, my great-grandfather, TW Attwood, was in a deputation to the new Parliament House. He would have argued a strong case—not like mine, which probably doesn’t break any new ground. But the family say he also had great passion. I hope something of that passion in a parliamentary office long ago will be apparent in this submission.—

Tetany Spasms

After an emergency surgery, I woke in the middle of the night with the most appalling pain seizing me. Every muscle between my knees and shoulders seemed to be trying to tug on the massive abdominal incision and tear it apart. It was like every muscle was cramping at once. I couldn’t move for the moments of the attack, couldn’t even breathe, or speak or cry out. I immediately realised this was not normal post-operative pain. Something in me was creating it. Only with a conscious effort of will was I able to unravel the muscles, like easing a possum skin off the nailed board on which it’s been stretched. It took time and the pain continued throughout.

Although I reported this problem to the surgical Rounds team at 8am — and in fact had an episode right in front of them while they stood round the bed — not one of them offered any comment. Subsequent conversations with the pain specialist failed to deal with ongoing attacks for nearly 48 hours.

One night a nurse really listened to me and I was prescribed a drug that stopped the attacks. But there was still no diagnosis. Months later, a very knowledgeable nurse friend suggested that I might have experienced tetany spasms. I surfed the net—as you do—and found a surgeon who had experienced the same very rare symptoms after his own operation and was appalled at the level of pain.

Prospect

If that kind of pain, even in short spasms, is what I might expect when this rather ordinary disease overtakes me some time, I don’t want it. If something like that is what broadcaster Andrew Denton described of his father’s agonising death, I don’t want it. From my own experience with the excruciating agony of those terrifying spasms, I don’t have any confidence that pain of that level will necessarily be palliated or even recognised. Nor do I believe for a moment that pain is a necessary part of the very ordinary business of dying in the modern age.

Reflection

Looking over my submission, I don’t wish to change much. But I hope you will review carefully the sections on—

·       the Slippery Slope and Change and their risks and effects;

·       the suggestion that much traditional religious thinking is not helpful in this debate in the context of a secular society;

·       my claim that medicine, Government, and some Christians are trying to have a bet each way;

·       my view that full agreement on the issue should not be expected

·       but providing for choice is a demonstrably fair and reasonable expectation for some terminal patients.

In every waiting room in the Health system I’ve seen posters encouraging me to become involved in my health decisions—until my last days when my wishes will suddenly expire like a twelve months’ old Prezzy Card. Please now take that further step and allow me a little simple responsibility in my dying. Please extend my personal choice to that life-defining moment.

“Looking Great”

All through my journey with prostate cancer people—becoming aware of my rising PSA said, “But, Dave, you’re looking great.”  They didn’t realise that it was hormone medication that was filling out my face so of course I looked good. Recalling the gaunt, emaciated faces of many terminal cancer patients, what I ask of you now is that after my death, anyone seeing me might say, “Gee, Dave, you’re looking great” — because you gave me the choice of dying with dignity.

And, oh yes, my great-grandfather’s petition to Parliament? The following year, exactly a century ago, Parliament granted their request which led to sweeping changes in the fruitgrowing industry. Tongue in cheek, I suggest that is a great precedent for your Committee today. You, also, could create significant change for our country by encouraging Parliament to permit me and other terminal patients to have some say in our end of life.

Dave Mullan

28/101 Red Beach Rd, Red Beach,  0932      +64 9 426 7562

Colecalciferol Confusion

A visit to Med Onc always ends up with prescriptions for all kinds of stuff, of course, and this week was no different.

However, what was different this time was a little difficulty arising from a small mistake several months ago.  I’d ordered up the full set of half a dozen items quarterly from my local doctor. He mistook my vague requirement for three Colecalciferol capsules a quarter and ordered up only two—which would be the correct dose for an Eclasta infusion which he assumed I would be having.

When I picked up the prescription and found I was one short, I contacted the pharmacy. They were sorry, but no, they could only provide exactly what was on the prescription. Certainly they couldn’t slip me another capsule.

I smoothed over the problem by ordering subsequent quarterly prescriptions somewhat earlier than I needed them so I would get access to this one capsule in time to take it on the proper day of the coming quarter. The system doesn’t seem to notice that I am getting several hundred dollars’ worth of medications somewhat ahead of when they are going to be used—at the end of this month I will have in my possession two Zoladex implants at around $500 each...

This week, to tidy all this up, my consultant prescribed four Colecalciferol, to enable me to catch up. But this morning I find only three capsules are in the container. Lengthy phone discussions with two people at the pharmacy have made it clear that this time they would be breaking the law if they filled the prescription exactly as the consultant wrote it. They can only issue three because the instructions were to take one each month. And they can only issue three months at a time.

So I asked if I could buy one capsule to make up the deficiency. No, they can’t sell prescription drugs—that’s against the law as well—but they could sell me a pack of 60 regular Vitamin D that were not as strong—for around $15. A sledgehammer to crack a nut, I thought.

“Just get your doctor to write another prescription for three”, they said.  Well my friendly GP would want $15 to write that and $5 to fax it to the chemist who would also charge the standard prescription part-charge of $5 when I pick it up. Not much of a deal, I thought.

How much are the darn capsules, I asked. They thought they were being refunded $15 for three. Actually, having extracted 120 pages of personal information from some eight systems linked to my National Health Index number—through some technical Right to Personal Information or something—I find that Colecalciferol capsules are being costed out on my records at a mere $1.01 each.

But I can’t give anyone a dollar to get one just to straighten this mess out. So I will carry on ordering the whole suite of stuff ahead of time just for the sake of having one capsule on the 6th of each month. And some time I’ll ask my Consultant for a separate prescription for just one Colecalciferol to bring everything up to date. That much cost will be on the generous public health budget but I will still have to pay the pharmacy part-charge of $5 when I fill the prescription. And I wouldn’t be surprised if the pharmacy didn’t make it up to two or three capsules because they couldn’t figure out what I would do with just one.

Somewhere in all this I think there must be the makings of a pretty good comedy script. But I wouldn’t write it because however much I am amused by its eccentricities I am grateful for the large amount of public funding that is keeping me going from day to day. 

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!