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 !
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