Introduction

Explore how good attitudes can effect change. And how small steps, one at a time, will often access the best outcomes.

If you’ve landed here looking for likeminds.org.nz, a site dedicated to mental health in New Zealand, then click here >>

First published on 19 Feb. 2021, from Wanaka, New Zealand

Countless friends and family and medical professionals are helping me on this journey. Special thanks to two doctor friends Roger Wandless and Jim Vause – your overview of this publication has been especially invaluable. And pretty important!

Roger was interviewed on National Radio, and it was aired today 22 Nov. 2021. Away from the front-line – doctors as artists. Have a listen as it is relevant to my story. Cheers Donald

Welcome to LikeMinds a place for those seeking a deeper meaning in life. As it can relate to mental health.

The structure of the story is around having a cancer. But the content and ideas are not defined by this.

Evaluation of the techniques and mindsets discussed are best done with great care. In line with individual needs, and with appropriate conservation of energy. And in an ideal world with professional input!

The material presented on the site is in no way intended as medical advice. Or as a substitute for medical treatment. Guidance from your doctor or other health care professional should always be sought. Be involved with them on all levels.

This blog mimics a book – with chapters. By clicking this link every chapter will appear below.

Or jump in somewhere


Chapter 5 – Waiting and Watching

Waiting and watching, and the roles gratitude, anxiety, and fear play in decision making.

Looking back on this period of a bit more than 12 months which spanned December 2018 to March 2019 approx. I immediately think of winter.

Maybe this was because, in a way, it was a bit of a long winter of the soul!

But was it really? It spanned all the seasons after all.

It also spanned the angst of waiting, through to the gift of time to plan and make changes. And the latter included the possibility of having to make significant decisions.

Time Line of This Chapter:

Time both speeds up and slows down. Relatively speaking of course!

  • I’m relating to seasons, especially winter, again!
  • The challenge of long road trips to hospital in Dunedin.
  • A look at various camping places.
  • The art of being grateful.
  • Recommended reading.
  • Technical stuff.
  • A sad and sobering story about an old friend.
  • Mountain biking after counseling sessions.
  • Compressed time, and feelings associated with “wait and watch”.
  • Anxiety, and decision making options.
  • More thoughts on fear.
  • Training for a pandemic.
  • A new job.

Emotions engendered my feeling of always being in winter mode. This I know and they did fit well. I do sometimes wonder though, if timing would have fitted no matter what.

Three monthly visits to Dunedin Hospital, and monthly bloods done in Wanaka, is how it played out. With the occasional CT scan at nearby Dunstan Hospital.

Old kokonga railway station, now resited to Okeake Conservation Park, Central Otago NZ. With Land Cruiser camper to the left

One challenge was how to drive for 4 hours to hospital and back again when compromised by illness!

The answer was to do it in easy stages.

Using my 4wd ” White Turtle” camper. And deviate, usually to altitude, for a view and a sleep.

◀Old Kokonga railway station, now re-sited to Okeake Conservation Park, Central Otago NZ.

And then I’d go for a walk!

Not too far – energy conservation became something to be mindful of.

◀Historic Buster Gold Diggings, Okeake Conservation Park, Central Otago NZ.

And sometimes I opted to deliberately experience the moment by traveling into darkness. On foot usually!

For practice in case some wild treatment was needed for my disease do you think?

Candle lit camper truck
Something to look forward to each evening
3 toilets in New Zealand high country tussock
And sometimes I’d get lucky and find the best of bathrooms!
Cow looking at the photographer, shooting the sunset
Camping at lower levels
introduced me to the odd local!

But this is what I remember most about the constant travel for a year and a bit!

Afflictions of worry would often ride with me on the long haul to Dunedin. My mind would play over every possibility around where my disease was at.

Would it be “wait and watch” forever? And I’d die with the disease, and not of it.

Or something else!

The rest of the time I’d practice being grateful:

  • For being so relatively fit and well.
  • For the support and love from so many family and friends.
  • For catching up with my son in Dunedin on every visit.
  • For our amazing public health system, and it’s commitment to timely intervention. Especially it’s people.
  • For science and technology
  • For a warm and cosy night in the amazing landscape, that’d change each night of my journey.
  • For being gifted the chance to prepare, for whatever might transpire.
  • And for the gift of time (see below, Pat’s story)

So I started reading a lot!

Apart from being very useful I found this to be a delightful read. And thoroughly recommend it…

“The hardest choices are also the most consequential. So why do we know so little about how to get them right?”

< Available at Apple’s iBook and perhaps for Kindle (no I’m not on a commission!)

Technical Stuff:

Being examined in minute detail at Dunedin Hospital soon became the normal. A great state of affairs! And receiving updated copies outlining potential treatments (on paper) was similar. There would usually be two quite separate ones. And also one about a clinical trial. Yes, they’d change month to month. This reassured me a lot – that technology was advancing at an amazing speed.

I fell into knowing I could ask questions whenever. And having the cell phone number of a very experienced nurse dedicated to me, was a gift from heaven. At times over the next year or so I’d txt her a lot. I always got reassuring answers. (e.g. I was keen to explore fasting as a possible means to rebooting my immune system, was a typical question). And I could pass on any developments as they arose. Information they were keen on receiving.

Over time lumps formed. Under my chin on the left, a broad one started to concern me. And one on the right side of my neck, became my favourite. It became my “indicator”! And there were others tracking my lymphatic system. I learnt that they were dynamic though. One day they’d be up, the next down sort-of-thing. Touching my favourite became a next to useless occupation.

And I could not escape: on-going aches in arm pit and groin etc. My lymphatic system was out-of-sorts. I never did look for correlations – right now “tidal’ popped in to my head!

🔎 Bloods, monthly bloods! Done at home in Wanaka. I’d get the results a couple of days later on my computer. If the range was in green that was good. Red… well a bit alarming. But they were rare. I realised the only take home from the results were any trends. I would get apprehensive with each email notification – with a link to the results. This worry was best dealt with by hastening to read them. Over time I gained confidence. Lumps grew, but bloods stayed in the green month after month. Except for two occasions. And as there was no follow-up I realised “trends” were the important thing.

Looking back I’ve realised I’m developing the habit of leaving the worrying to others! A good or a bad thing do you think? To me it became all about energy conservation. And nothing to do with being selfish.

Selflessness is another topic coming up!

As the journey got underway I decided walking was my friend. Cold feet or not!

And there was one such walk, that turned out to be pretty defining (name changed for obvious reasons):

Pat was an old and dear friend that I’d not seen for awhile. He’d been right there for me as my son learnt his way through crawling, walking and toileting etc. Pat would often front up with useful gifts – often fun toy hand-me-downs utility stuff his children had out grown. Then we got out of touch a bit.

Then one day there we were. Walking together into our local medical center.

He had not looked well for ages (I’d seen him about town). I soon found out why!

“I’m not long for this world”, he said, “advanced melanoma!”.

I was speechless for a moment, while I pondered on this. And assessing what, if anything, to reveal about why I was there (to have bloods done).

I did venture to give him a very short explanation. i named my disease.

His reply startled me:

“It’s alright for you, you’re very fit”. Said with no sarcasm, or anything. It was a blunt and plain fact.

Dumb struck. If he had seen my thought, non-verbal speech bubble, it would’ve read, “well, why aren’t you?”

Later after much reflection I realised some diseases are often aggressive. Developing so fast, there is no time to change anything. In all things lifestyle related.

Pat died a few weeks later! RIP AC.

And that’s when I started to appreciate the gift of time.

From that time on, I made a far more concentrated effort to use my time well. Both, for myself, and for all those whose lives touch me. This is a responsibility I’ve taken on. With enthusiasm. And in his memory.

And the trips to Dunedin continued.

Plus every 3-4 weeks I’d attend oncology counseling sessions at Dunstan Hospital

◀After which I’d ride my mountain bike down the Otago Central Rail Trail, cross the Clutha River at Alexandra, and return. Biking up the sheltered and shady River Trail back to Clyde, (and a coffee). This really helped me assimilate and balance out the sessions.

In spite of all the above, at the time everything felt compressed. For example the three monthly visits felt more like one monthly.

So what were the factors compressing my perception of time? Was it my ever linear downwards trend into illness? There were occasional periods of leveling – some much longer than I expected.

Should we ever let fear become our friend?

fear itself disrupts spatial abilities

From Here to There: The Art and Science of Finding and Losing Our Way
By Michael Bond

For myself Time is Spatial!

Whatever the reason a sense of anxiety prevailed during my “wait and watch” challenge. Off and on. Interspersed with a growing sense of gratitude.

I figured though that I’d have to make complex decisions, but was just not sure when and what! Here are some examples:

Should I move to Dunedin. I had a couple of offers, e.g. use of a nice sleep out. And with it came the offer of being driven in and out of town.

Ditto stay with a cousin in Oamaru and he’d drive me to and from Dunedin as needed (a bit over an hour).

And similar offers from a good friends in Wellington, and in Invercargill. The latter having the same District Health Board so I could get the treatment there, with little need for much organising.

Or if I were to stay in Wanaka, who would be able to drive me to and fro once a month.

If I needed nursing then how would that work. Even if only a minimal amount yet I’d not be able to go shopping etc.

Lastly which treatment option should I opt for if I needed same. To date I’d had about 3 of, presented off and on, as mentioned elsewhere here. They kept changing in small ways in step with new developments.

Decision Making on the Fly or Otherwise:

~

In any stressful situation Fast and Easy is all too often the default of the moment. Unless we have trained for the situation. In any case avoid the lazy option…

~

Farsighted is Slow and Hard, and if appropriate will serve us better.

Thanks Dr Jim Vause – GP emeritus, for the recent very interesting discussion and inspiration on this.

How Fast and Easy nearly got myself and a friend killed.

We were trying a new route on a moderate sized mountain, in Aoraki Mt Cook National Park. It was spring time circa 1975.

Out of sight to the left in the photo, we’d been ascending a ridge. It had been getting more exposed and difficult. So we opted to cross this gully to easier ground.

Just after I got to the photographer (Roger Thompson thank you for photographing me), a wet snow avalanche swept the gully. It went down past us with a roar like an express train.

We’d had a close brush with death! Fast and Easy decision making took no account of the effect of an ever warming morning sun. Making snow slopes above prone to honouring gravity. The only good thing we did was not roping up and belaying! Ridges are always a better choice than gullies. A confined gully engenders a false sense of security. Ridges tend to be airy and exposed. Sticking to our first ridge would have been very wise!

Lesson: becoming anxious on steep but safe rock, equates to a narrow minded view of the world. Then we grab at fast and lazy solutions. Hard thinking gets put aside.

Fast forward a few years to when I’d become a mountain guide.

◀This is a few of us walking out from Pioneer Hut, in Westland National Park. After several hut days of storm and blizzard. A severely rimed/iced up Mt Tasman to the right.

The rime by the way would fall off in the next few hours. Making it not a good idea to be below such phenomena.

Before the storm the two people I was guiding, and myself, set off very early to climb a peak to the left. Walking conditions on the glacier were very hard. Our crampons left only slight marks.

Thirty minutes before arriving at the point we’d leave the relative flat of the glacier, and start up moderately steep but very icy slopes, the habitual observations I make in such places started to concern me.

Little did I know it at the time. I was about to make a Slow and Hard decision. To turn back. There were strange clouds fraternising with Mt Tasman. They were rolling even.

The decision over-rode commercial pressure. And my clients were very grumpy. And they were difficult, bless them – a recently divorced middle aged executive, and his 18 yr old son. The risk inherent in a mixed up divorcee and a testosterone afflicted teenager was not lost on me. And taken into account.

We got back to the hut in the company of the sun. By the time I’d primed and lit the Primus for a cuppa, it was snowing hard. And it went on for several days without so much as a break. I’m pretty sure I would never have found our way back to the hut in such conditions (no GPS back then, and a map in the wind, well…!) Not easily anyway. It would have taken hours if not days. Or we’d have hunkered down in a crevasse for the duration. We may well have perished from exposure, and/or got frost bitten extremities. I doubt we even had spare warm socks!

Slow and Hard decision making saved the day.

My point being that when in the grip of a potentially terminal illness, of course anxiety is going to visit us!

It really helps I think to understand it’s relationship to decision making. This not only applies to the patient but also to support people.

Pioneer Hut 1979. Long since replaced with another nearby. Buildings in this sort of environment do not endure! And it turned out the foundations were unstable.

Alternatively, having too much information about an upcoming decision can lull us into a false sense of control.

There are countless examples in history of this not working. e.g. battle of Chancellorsville 1863 (decisive win by Confederate General Robert E. Lee. His opponent General Joseph Hooker put a great store in intelligence. And it failed. Nimble thinking was Lee’s forte – he knew which bits of information mattered. He knew that ridding himself of an overload would enable agility of thinking. Hooker then perceived Lee to be unpredictable. It rattled him. Yet he had twice the troop numbers.

Blink, The Power of Thinking Without Thinking (2005) by Malcolm Gladwell tells the story well

On the other hand a reductionist attitude (discounting relevant information) can also lead to tears before bedtime.

I think it’s not knowledge we need to gather, and hold onto. Instead understanding, so we become wise in knowing what data to collect!

Which leads into a future discussion perhaps. When to decide from the heart or the intellect. Or a mix – if so which weight/ratio to assign to which resource is the question! This is the challenge of our time!

Thoughts on Fear…

Fear can often be quite irrational.

e.g. when on steep ground, fear is not our friend. Calm abiding and fluidity of movement is lost. We quickly become a danger to ourselves.

On the terrain in the photo to the left we need to be relaxed and not moving stiffly! If we are in “quite a state” in the hold of fear, the only antidote often, is to go back to breathing rhythmically.

The other side of this irrationality can kick in when we ski out onto a safe looking slope.

It maybe just on the point of collapsing and avalanching, but our good friend fear is back on the ridge enjoying the view and taking photographs.

Inspiration for this came from the late Bruce Jenkinson. He was writing a book called Mountain Recreation just before he was killed by a single rock(fall). Quite near where I nearly met my end as above. The book was finished thanks to the efforts of my old friend Geoff Wayatt.


You may have by now guessed, that sooner or later I’d need medical intervention. This meant an induction session. All about what to expect and how to stay safe, with a compromised immune system.

I never saw the Covid 19 pandemic coming. But when it did, with lock-downs etc., I felt ahead of the game. I had already come to terms with a new flavour of mortality and staying safe. Social distancing parameters and decision making, took on a new persona!

Now many months into the pandemic it strikes me we can apply the new norms., not only to Cv 19, but to any serious illness of the day.

It is after all a lot about decision making. Under duress or otherwise.

What we can learn from Covid 19…

Dr Tom Stafford, a psychology lecturer at the University of Sheffield has some wise advise for our current times. You can read the full article in The Guardian (link below).

“ “There is a huge asymmetry with risk,” says Dr Tom Stafford, a psychology lecturer at the University of Sheffield. “If you can get away with things that are low probability, you don’t know how dangerous they are until it’s too late.” Stafford uses the example of driving without a seatbelt: most of the time, you will be absolutely fine. But the one time you are in an accident, things might get very bad very quickly.

“It’s the same with the vaccine,” says Stafford. “It’s a low-probability event that you will get the virus and need hospitalisation. But if you do, then the vaccine shows its benefit.”

Stafford says that decisions about vaccination, particularly for Covid, are some of the hardest that people have to make. “Risk calculus can be particularly hard in certain circumstances,” he says. “Risks where we don’t always see the outcome, so we have to trust people. And new risks. Coronavirus is both of those things.”

In the age of social media, we don’t even need to have met the people we trust as much as established experts. “That’s why social media is so dangerous,” says Stafford. “Because people share that emotional connection with influencers they might never have met. But it’s an asymmetrical intimacy. I may think I know that vlogger and they are talking to me. But really they’re talking to millions of people – and the advertisers generating them their revenue.”

If you can get away with things that are low probability, you don’t know how dangerous they are until it’s too late ”

Sound familiar – fast and easy decision making v. hard and slow!

Get the full context here at The Guardian >>

“The falsehoods that John repeated to his family and friends in the months leading up to his death are common tropes in online anti-vaccine spaces and easy to find: the vaccine has dangerous levels of formaldehyde in it; the vaccine is experimental; people are only getting the vaccine for the free McDonald’s”


A New Job: I was starting to realise that exercise of the upper body would serve me well.

So I worked for a surveyor friend for the duration of “Wait and Watch”. My rationale was simple. Hammering in pegs and stakes would enhance the circulation of my lymphatic system. With walking lots an added bonus.

Sheep on a rural road in New Zealand
We’d drive to Southland for the day.
To mark and stake out a rural road.
For an upgrade.
Hanleys subdivision in a snowstorm, near Queenstown New Zealand.
Not in snowstorms or rain, as the instruments would not work. This was shot while we were having lunch as a snow squall went through. On a rather miserable winter’s day.
Hanleys subdivision near Queenstown New Zealand. Remarkables in the background.
On other days we would work on the huge
Hanleys subdivision. Situated south of
Queenstown.
Remarkables in the background.

If you landed on a single post instead of the Home Page which is arranged like the chapters in a book, then click here please to go to the start >>

BTW current state of health, as of Jan 2022, is pretty good!

The next post/chapter will be titled something like, “Hope”

If you would like an email notification for new posts coming up (at least a doz. planned), then please leave your details here

The content presented on the site is in no way intended as medical advice. Or as a substitute for medical treatment. Guidance from your doctor or other health care professional should always be sought. Be involved with them on all levels.

Chapter 6 – Hope, Curiosity and a Roadie

Waiting and watching, while contemplating Faith, Hope and Charity

Dust storm coming down the Tasman River and onto Lake Pukaki. New Zealand

There was a sense of Waiting and Watching coming to an end.

Symptoms were becoming more evident. Day-to-day life was getting miserable 24/7. But sleeps were good. No night sweats – a common symptom (which I’ve never had).

The perfect storm was brewing!

Time Line of This Chapter:

Decisions relating to choosing a clinical trial as a treatment for mantle cell lymphoma. Plus a few roadies with photos.

With important lead up discussions on hope, anxiety and curiosity.

Crossing of the First Serious Threshold.

Recommended reading (placebos).

A surprise eye development.

And the usual technical take and treatment stuff.

Hope

Earlier on in the course of my cathartic writings here, I had not considered Hope. What it is, and what it does. My friend Dr Jim Vause, who has been a great help in these writings, pointed out it’s importance.

During this Wait on Watch phase of my illness, I’d been constructing a 10 point plan to wellness. In my head though, at this wait and watch stage. In fact I was not even sure it would be 10. Anything in the range of 7 to 12, was how it stood at the time.

Now looking back, hope was always present. The basis for the 10 point plan was hope! Hope is such a natural thing. Sometimes we can overlook this fresh cause for optimism! Against all the odds, when we’re ill especially.

Hope is:

  • A central tenet in recovery.
  • An enabler of the other factors involved in recovery.
  • Provides a haven from pessimism and fear.
  • Offers the means for a better future. Perceived and thus achieved.
  • Galvanises our courage and mobilises our energy and vitality.
  • Enhances our mood and our creative thinking.
  • Includes loved ones as well as strangers.

Any illness is not part of our nature. Viewed as states of mind can be the case. If so there is potential for change.

Hope is a really interesting one particularly as you know when you get a medical label that might mean death. Given we’re all going to die anyway you can see how hope is more than just personal.

~

Its a hope around your family, friends and society, the latter being a challenging hope with the ability of social media to screw viewpoint, and the fact that so many of those so affected don’t know it.

Thanks Dr Jim Vause – GP emeritus, for the above.
That Wanaka Tree. in a snow storm with a photographer under an umbrella

And when Sept. 2018 came along…

So did a snow storm arrive. Actually in Wanaka.

Which is quite rare!

And then something totally unexpected happened…

Original Liverpool Bivy. Mt Aspiring National Park, New Zealand

An old friend and work colleague at DOC died in a helicopter crash near the Wanaka Airport.

< The old Liverpool Bivy ex Mt Aspiring National Park, now in storage in Wanaka, was setup for his farewell.

It really made me stop and think! He was younger and disease free. It was small solace to ponder that he was simply off to work that morning, and 5 minutes later he was dead. And there I was, at the time, prone to worrying about the future!

I am an old man and have known a great many troubles, but most of them never happened.

Attributed to Mark Twain in Reader’s Digest. Which may or may not be accurate. Mark Twain is probably the most quoted (and misqouted) person in history. 

So after Hondy’s farewell I figured it’d be beneficial to hit the road again in my camper truck.

Lake Pukaki, lupins and a late spring snowfall
Lake Pukaki, lupins and a late spring snowfall.
Waipapa Point Lighthouse 
in Southland New Zealand
Waipapa Point Lighthouse
in Southland. Just south of the Catlins
mural in Gore Southland New Zealand
A thought provoking mural
in Gore Southland

Anxiety

Tents on Forgotten River Col. Olivine Ice Plateau wilderness. Mt Aspiring National Park. New Zealand

With constant waiting and watching anxiety often became a companion.

I could hardly say it was welcome!

A long time ago in a very remote place we woke up to a serious incoming storm. Serious because of our very exposed location.

This sort of anxiety is nullified by being able to do something immediately. We looked at the situation – few words were spoken. In essence we had accepted the situation, and knew we could change it. Which is a lot more immediate than accepting a disease.

We packed up in short order and descended. Into another type of anxiety. Namely dealing with hypothermia. We had no shelter for hours and very little food. Anxiety of a slightly longer duration!

For myself I was the slowest. The others being equally afflicted sort of forgot about me. As the storm really got into gear I found myself entering a deeply incised and bush filled gorge. Via a deer trail that wound through bluff after bluff. It became critical that I did not lose it. I did a couple of times, but due to my condition I was beyond anxiety. Staggering about like a drunk. Hypothemia takes one beyond anxiety!

Down by a very flooded and wild Forgotten River a bush camp was being established. The others were surprised to see me. I think they’d forgotten me (for which it was easy to forgive them). So we hunkered down in tents beside a flooded river for a few days. It was impossible to cross.

The flood went on, then abated. And we then popped over a pass, camping high enroute. But food was in very short supply. No anxiety at this point though for me at least. We had to descend some gnarly terrain and get to a hut. This amply occupied my thoughts. Lesson: keeping busy is good.

Safe and warm later, and again pinned down by rain we waited, and waited. We were very weak. And contemplated on how it felt. Having been out for about 15 days, on 10 days of food. Acceptance yes. But we were trapped. Being trapped in any situation can alone trigger anxiety. It is a big factor in dealing with Post Traumatic Stress.

And of course we all know, and have experienced, anxiety in many guises. Triggered by who knows what!

I’m not sure about the others, also enduring the cold and dampness I was experiencing on this expedition. But I saw little point in being anxious while in the hut. Because it takes energy. This is a very important point to consider when ill!

PS when it cleared we attracted a passing meat shooter in a helicopter. And he thankfully organised a pick up that night. Btw no personal locator beacons in those days.

With the above being a sample of how I’d dealt with more immediate anxiety experiences, I was not very well equipped to deal with constant “waiting and watching”, over many months. That was inherent in my cancer journey.

Curiosity

Very subtly a curiosity developed as I came and went to the Dunedin Hospital, while I was waiting and watching. What would I learn!

It appeared there could be 3 possible scenarios: death, healing, or living with a disease (more waiting and watching). What could I do to emolliate the first or the last I thought!

Little did I know it, at the time, but research was being done on it. Curiosity in relation to anxiety. Listen up here at Radio New Zealand: Unwind your anxiety by being more curious >>

I was to look back on this revelation sometime later. With the realisation and decision, that if I was heading into the unknown, I may as well welcome it. I started capitalising:

Unknown!

  • How would it feel
  • Where would I end up?
  • And “could I handle it?”

I’d find out soon enough I thought.

And I soon found out that curiosity feeds on itself.

Questions I was starting to formulate:

  • Did an aspect of my subconscious decide it was a cunning idea that my body host a potentially terminal disease? As a distraction perhaps. To stop me processing deep past hurts?
  • A guy with a terminal diagnosis makes a deal with his cancer, “Look after me and I’ll look after you. Because if I die, so will you!”. And it apparently worked. So how does this relate to our subconscious?
Mt Aspiring from Climax on the Olivine Ice Plateau, New Zealand

Oh and for all the upcoming privations and challenges on our Olivine Ice Plateau wilderness expedition, we did at least manage to climb a peak called Climax.

And then the storms arrived.

Mt Aspiring to the right.

Technical Stuff:

By February 2019 I had the feeling that waiting and watching now had a used-by date. By coincidence at the time (or otherwise) I learnt my routine checkup was to be at nearby Dunstan Hospital.

After the usual hour long drive my personal nurse (very experienced) did the examination 🔎. And not my oncologist. The crux came when she had finished the usual hands-on feeling of my lumps. All mapped out by my lymphatic system.

Everything I needed to know came about non-verbally (she of course would have to discuss her findings with my oncologist, before I’d have verbal and official confirmation).

The time was nigh to consider options. A binary choice; clinical trial or traditional treatment.

Of course I knew a defining meeting would be next in Dunedin. An appointment time was forthcoming. But not with my “team”. But with a substitute oncologist. This was very disconcerting. So I requested a postponement until she was back at work. To my delight this was honoured. I figured any problems arising from an added progression of the disease caused by a delay of two weeks, would be off-set by many factors. e.g. trust was already established. I did not want to reexamine this very important aspect.

Back on the Road

It was after all autumn. Settled weather, and of course gorgeous colours everywhere.

I did a damp but delightful tramp in Dunedin’s Silver Peaks. Others at Bendigo near home, and the Buster Diggings (both historic gold mining areas). All were delightfully physical (I was so grateful that I was still fit enough to enjoy them all immensely).

Silver Peaks near Dunedin. Wreathed in cloud
Silver Peaks near Dunedin
Buster Diggings. Historic gold mining area Central Otago, New Zealand
Buster Diggings in spring time. Historic gold mining area, Central Otago, New Zealand
Historic gold mining cottage at Bendigo, Central Otago, New Zealand
Bendigo. Historic gold mining area,
Central Otago, New Zealand

And an amazing roadie to Wellington with a close friend. Who, as well as doing all the driving, very generously donated the cost of flying back home. Thanks Ian – it was amazing and defining.

Benmore Power Station, Waitaki Valley, New Zealand
Benmore Power Station.
Downtown Wellington. Gardens
Downtown Wellington.
Cook Strait sunset. New Zealand. Looking at the South Island
Cook Strait sunset.
Looking at the South Island.

The benefits of my trip to Wellington were outstanding. It took me totally out of myself.

And seeing the effects of the major 14 November 2016 earthquake (and reconstruction) on the Kaikoura coast line, was a real eye-opener.

The uplift of the coastline was so massive that rock beds were exposed for the first time ever. The whiteness was caused by dead marine vegetation.

Facing the Music time

It was time to “face the music” as they say. Off I went to Dunedin, to ascertain “what next”. The disease was now manifesting in my lower eyelids. And could only be relieved with hot compresses. Obviously something had to be done!

But there was a bonus. My cousin Deirdre and husband were going to be there as well. They had bought their pellet fire down for servicing before winter. As well as doing some touristy stuff (which included my son) I was able to help, as by now I knew my around the city quite well.

Dunedin Chinese Gardens
The Dunedin Chinese Gardens
were a real highlight.
Dunedin Chinese Gardens, entry way
Dunedin Chinese Gardens, by the entry way.
Dunedin Chinese Gardens window

Big decision making time

As soon as I met with my oncologist and nurse I opted for the clinical trial on offer:

The heading of this website sums it up nicely: A Study of Bendamustine and Rituximab Alone Versus in Combination With Acalabrutinib in Subjects With Previously Untreated Mantle Cell Lymphoma. Check it out here >>

The Crossing of the First Threshold, was about to begin…

This is the point where the person actually crosses into the field of adventure, leaving the known limits of his or her world and venturing into an unknown and dangerous realm where the rules and limits are not known.

~

The adventure is always and everywhere a passage beyond the veil of the known into the unknown; the powers that watch at the boundary are dangerous; to deal with them is risky; yet for anyone with competence and courage the danger fades.

Joseph Campbell. The Hero with a Thousand Faces – ISBN: 9781577315933

Well I never felt courageous. But what the hell! And for such a journey guides come with the package. And I certainly knew even then, that I had some great ones!

Since the clinical trial was to be placebo based, it was time for more learning!

I perceived this as a “fashionable” read. But is was very useful. What was best for me though was it taught me a lot about meditation. It helped me begin what is now a well established habit. A part of my healing!

You Are the Placebo by Dr. Joe Dispenza.

But if you really want to understand placebos this is the book!

Cure: A Journey into the Science of Mind Over Body by Jo Marchant.

A rigorous, skeptical, deeply reported look at the new science behind the mind’s surprising ability to heal the body.

Later in my journey a friend recommended it. This coming from a highly qualified nano technology businessman, who actually knew of her when visiting Oxford Uni. (and her robust grasp of science), was very helpful.

Published: 1st May 2017
ISBN: 9781925498462 and available as an Apple iBook download. Probably Kindle also.

Mural Clyde museum Central Otago New Zealand

Coaching on the road

< mural on a Clyde Museum external wall

There had been a time conflict for my oncologist in Dunedin. She had to talk me through the nuances of the clinical trial. And ensure I understood. This is not only very practical, but also a legal requirement I think.

So by arrangement on the way home I stopped at Clyde for awhile, and waited for her to ring me. It worked a treat. And took almost 30 mins.

During the conversation I made the remark that cancers seem to be very sneaky beasts. Her reply startled me, “it’s about to get quite a shock, and won’t know what hit it!” It was the aggressive tone that surprised me; very positively I might add.

Hope had come to the party!

Prior to making the decision about entering a clinical trail. As one of two treatment options. I felt a degree of stress. And now everything seemed more simple. Or was I just settling into the concept of a “long haul”?

The rational for my decision was quite simple:

I was told, “I really want you to consider this option. Because it works. And I don’t want you to miss out, because the trial has been going for quite awhile, and may close soon”

She also said, “the big challenge will be the monthly travel (and other appointments for scans etc.), and if this starts to knock you about I’ll pull you out of the trial”.

I also learnt that I could pull out of the contract at any time. Then I’d just get the traditional treatment closer to home at Dunstan Hospital. And maybe the trial drug capsule much later on if appropriate. (note the trial is all about having all three at the same time – two chemos delivered via IV, and Acalabrutinib capsule twice daily

I for sure perceived a win/win scenario, when told this: “If after x number of treatments you start to regress, we’ll be advised by the drug company in the US as to whether or not you are taking a placebo (the Acalabrutinib capsule twice daily). If so you’ll then be given the real thing”.

Lastly all accommodation and travel costs would be reimbursed indirectly by the drug company running the trial.

So I signed up. Along with 546 others in the world!

Oh and I liked the altruistic aspect!

PS I quickly learnt that all aspects of a trial have to be done at Dunedin Hospital (and definitely not the lovely cottage style Dunstan nestled by the Old Man Range near home). As well as being a research hospital Dunedin also hosts The Otago University Medical School. And the School of Dentistry nearby. Where my son works.

Up above I overlooked the relevance of disease symptoms manifesting in my lower eyelids. So here is the story:

At first a soft swelling was quite subtle. But as it set in, it started to be very irritable. Like a loose eyelash was stuck under each lower eyelid simultaneously.

When I mentioned it in a pre treatment clinic in Dunedin I was told this was not the norm. However my oncologist immediately picked up the phone. And with impressive haste I found myself in the hospital’s eye department a couple of hours later.

Quick as… a registrar said, “the disease is present for sure, you need treatment straight away. But hang on while I get a second opinion”.

She, his supervisor I think, turned my eyelids even more inside out (ouch, it was quite uncomfortable for a short duration). And almost word-for-word said the same. Adding, “… and the swelling will go away very quickly”.

I also learnt that their concern was quite grave. Such a condition can put undue pressure on the rear of the eye. And cause blindness. I was immediately booked in for monthly check ups.

What surprised me was they did not wait to pass on the diagnosis/information to oncology (and then they’d inform myself), But rather stated, “you need treatment!” This to me, was in a way, a second expert opinion.

PS I was amazed at the sheer number of people/patients coming and going from this department. It was staggering and in the hundreds daily.

And after all that on the last clinic before treatment. I went out yet again for lunch with my son. A lovely habit we were forming. One that was easy, as he works near the hospital.


If you landed on a single post instead of the Home Page which is arranged like the chapters in a book, then click here please to go to the start >>

BTW current state of health, as of March 2022, is pretty good!

The next post/chapter will be titled something like, “The First of many Treatments” or “Towards Remission”

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