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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