Chapter 5 – Waiting and Watching

The Roles of Gratitude, Anxiety, and Fear in Decision Making

As I reflect on the period between December 2018 and March 2019, which was a tad over 12 months, the first thing that comes to mind is winter. It may be because it felt like a long winter of the soul. However, it spanned all the seasons, and looking back, I realize that waiting and watching played a significant role during this time. It was a period of uncertainty, and it gave me time to plan and make changes, which could potentially include making significant decisions.

My emotions during this period made me feel like I was always in winter mode, and they were fitting for the situation. But sometimes, I wonder if the timing of the events would have been the same, regardless of my emotions.

The waiting and watching involved three monthly visits to Dunedin Hospital and monthly blood tests in Wanaka, with occasional CT scans at the nearby Dunstan Hospital. The uncertainty of waiting for test results and not knowing what the future held was anxiety-provoking. However, it also allowed me to appreciate the simple things in life and the support of family and friends. Gratitude played a significant role during this time, as it helped me stay positive and hopeful.

Fear was also present during this period, especially when contemplating the possibility of making significant decisions regarding my health. However, it was necessary to confront this fear and make decisions that would improve my health and well-being.

In conclusion, waiting and watching can be emotionally challenging, but it can also provide an opportunity for personal growth and reflection. Gratitude, anxiety, and fear are natural responses during this time, and it is essential to acknowledge and confront them to make informed 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.
  • An easy choice re a clinical trial
  • More thoughts on fear.
  • Training for a pandemic.
  • A new job.
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 and dark 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!

As I look back on the year and a half of constant travel, one thing stands out in my memory the most: worry and anxiety were often my constant companions on the long journey to Dunedin.

I couldn’t help but wonder if it would be a “wait and watch” scenario forever, and if I would end up dying with the disease rather than of it. But despite the worry, I knew I needed to stay my chosen course and keep making informed decisions about my health.

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

  • For being 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 landscapes, 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.

🔎 My visits to Dunedin Hospital involved being examined in great detail, which eventually became the norm. I was given updated copies of potential treatments on paper, usually with two quite separate options. As I had reached an age threshold where it was too risky to undergo certain protocols, the treatments would change monthly. Despite this, the fact that there were constant changes reassured me, as it showed that technology was advancing rapidly.

I felt comfortable asking questions and was fortunate enough to have the cell phone number of an experienced nurse who was dedicated to me. I would text her frequently with questions, such as exploring fasting as a possible means of rebooting my immune system. I could also pass on any developments that arose, which they were eager to receive.

Over time, lumps began to form. A broad one under my chin on the left side and one on the right side of my neck became my “indicator”. I also had others tracking my lymphatic system, which I learned were dynamic and constantly changing. I experienced ongoing aches in my arm pit and groin, as my lymphatic system was out-of-sorts. However, I never looked for correlations between the lumps and the aches.

I had monthly blood tests done at home in Wanaka, with results being sent to me a few days later on my computer. If the range was in green, it was good news. If it was red, it was a bit alarming, although it was rare. I soon realized that the only takeaway from the results was any trends, which I paid close attention to. At first, I would feel apprehensive with each email notification, but over time, I gained confidence. The lumps continued to grow, but the blood test results stayed in the green month after month, except for two occasions. As there was no follow-up, I realized that “trends” were the important thing to focus on.

Looking back, I realized that I developed a habit of leaving the worrying to others, which could be viewed as good or bad. To me, it was all about conserving my energy, and it was not a selfish decision.

Selflessness is a topic I plan to explore in my next post.

During my health journey, I quickly learned that walking was my friend, no matter how cold my feet were.

One day, while walking into my local medical center I met with an old friend, Pat, who I hadn’t seen in a while. Pat had always been there for me and my son, often giving us hand-me-down toys and useful gifts. However, during our walk, I noticed that Pat didn’t look well. He soon revealed that he had advanced melanoma and that he wasn’t going to be around for much longer.

I was speechless for a moment, uncertain of what to say or whether to reveal that I was there to have blood tests done for my own health condition. When I did eventually mention my illness, Pat surprised me by saying, “It’s alright for you, you’re very fit.” It was a blunt but honest observation.

Pat’s comment left me dumbstruck. Later, I realized that some diseases progress so aggressively that there’s no time to change one’s lifestyle. Sadly, Pat passed away just a few weeks later.

Pat’s passing taught me to appreciate the gift of time. I became much more conscious of how I spent my time, for both myself and for those around me whose lives I touch. This is a responsibility I’ve taken on with enthusiasm, and in Pat’s memory.

Rest in peace, AC.

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.

At the time, despite everything that was happening, time felt compressed. For instance, the three-monthly visits to the hospital felt more like they were happening every month.

I wondered what factors were causing this compression in my perception of time. Was it due to my declining health, which seemed to be on a linear downwards trend? Although there were periods of stability, some lasting longer than I had anticipated.

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 knew that complex decisions lay ahead of me, but I was unsure when they would arise and what they would entail. Here are a few examples:

Should I move to Dunedin? I had a few offers, including the use of a nice sleep-out, with the added bonus of being driven in and out of town.

Similarly, I had offers from a cousin in Oamaru, a good friend in Wellington, and another in Invercargill. The last option would be convenient as it would allow me to receive treatment from the same District Health Board with minimal need for organizing.

If I chose to stay in Wanaka, who would be able to drive me to my monthly appointments?

If I needed nursing, how would that work? Even if I required only a minimal amount, I would not be able to go shopping, for example.

Lastly, which treatment option should I choose if I required treatment? So far, I had been introduced to about three different treatments, as mentioned elsewhere on this blog. They kept changing in small ways in step with new developments.

But one remained constant: I was encouraged to consider being part of a clinical trial! A Study of Bendamustine and Rituximab alone versus in combination with Acalabrutinib (capsules) in subjects with previously untreated Mantle Cell Lymphoma. Which would involve a placebo or the real Acalabrutinib. So often it was mentioned that I best consider it strongly. Because folk were doing well, and the trail had been going for awhile, and they did not want me to “miss out”.

It was great having a binary choice! So different to the more diabolical ones accompanying some diagnosis’s.

And as it turned I went down that road, like a man on fire needing a pond.

Decision Making on the Fly or Otherwise:

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

Fast and Easy Decision Making Almost Got Us Killed on a Mountain

In spring 1975, a friend and I were attempting a new route on a moderate-sized mountain in Aoraki Mt Cook National Park. As we were ascending a ridge, it became more exposed and difficult. So we made the fast and easy decision to cross a gully to easier ground, out of sight to the left in the photo.

Once I reached the photographer, a wet snow avalanche swept the gully, just missing us. We had a close brush with death, and it was all due to our fast and easy decision-making that didn’t account for the effect of the warming morning sun on the slopes above, making them prone to the inclinations of gravity.

The only wise thing we did was not to rope up and belay. We sure learned that ridges are always a better choice than gullies, as gullies engender a false sense of security, and are conduits for falling snow slides and rocks while ridges tend to be airy and exposed. Sticking to our first ridge would have been the smart choice.

The lesson was that becoming anxious on steep but safe rock equates to a narrow-minded view of the world, and then we grab at fast and lazy solutions. Hard thinking gets put aside. It’s important to take the time to consider all factors before making any decisions.

In conclusion, our experience taught us the importance of taking the time to make informed and well-thought-out decisions. A quick and easy decision may seem convenient, but it can be dangerous and potentially life-threatening.

Slow and Hard Decision Making Saves the Day: Lessons from 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.

As a mountain guide, I learned the importance of making slow and hard decisions. One particular experience stands out in my memory, where I had to make a difficult decision that ultimately very probably saved our lives.

I was guiding two people up a peak in difficult conditions. Our crampons barely left marks on the approach on a hard glacier, and as we approached the moderately steep and icy slopes, I noticed strange clouds rolling in and fraternizing with Mt. Tasman. This observation concerned me, and I made the slow and hard decision to turn back, even though it meant overriding commercial pressure and dealing with grumpy clients.

My clients, a recently divorced middle-aged executive, and his testosterone-afflicted 18-year-old son, were difficult, but I took into account the risks inherent in their combination. We made it back to the hut just as the snow began to fall heavily, which lasted for several days without a break.

Had we continued on, I doubt we would have found our way back to the hut (photo above) in the blizzard conditions. Without GPS or a reliable map, we would have been lost, and may have perished from exposure, or at the very least got frostbitten. Slow and hard decision-making saved the day.

This experience taught me that taking the time to make informed decisions, especially in high-risk situations, is crucial. It’s important to understand the relationship between anxiety and decision-making, not only for the patient but also for support people.

In conclusion, slow and hard decision-making is essential in situations that require quick thinking and high-risk decisions. It’s crucial to consider all factors and to take the time to make informed decisions, even if it means overriding commercial pressure or dealing with difficult clients. Understanding the relationship between anxiety and decision-making can also help both patients and support people during difficult times.

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 a challenge of our time!

Thoughts on Fear…

Fear is a complex emotion that can often be quite irrational. In situations where we are on steep ground, fear is not our friend. It can cause us to lose our calm abiding and fluidity of movement, making us a danger to ourselves. When we find ourselves in such terrain, it is essential that we remain relaxed and avoid moving stiffly. Even if we are in a state of panic, the only antidote is to go back to breathing rhythmically. Or stop and make a cup of tea!

On the other hand, fear can sometimes be absent when it is needed most. For example, when we ski out onto a slope that appears safe, it may be just on the verge of collapsing and avalanching. Our good friend fear may be absent, enjoying the view and taking photographs.

I was inspired to reflect on fear by the late Bruce Jenkinson, who was writing a book called “Mountain Recreation” before he was killed by a rockfall. This happened near the same place where I almost lost my life, as described above. Despite the tragedy, the book was completed thanks to the efforts of my old friends.

In summary, fear is an essential emotion that can sometimes be irrational and unhelpful. Whether it is present or absent, it is essential to approach challenging situations with a calm and relaxed mindset, keeping in mind that fear can sometimes cloud our judgment and prevent us from making the right decisions.

Moving On:

As someone with a serious disease, I knew that medical intervention was likely to become necessary at some point. This meant undergoing an induction session to learn about what to expect and how to stay safe during treatment. Little did I know that a pandemic was on the horizon.

When Covid-19 hit and lockdowns were implemented, I felt ahead of the game. I had already come to terms with the new reality of mortality and the importance of staying safe. The parameters of social distancing and decision-making took on a new significance.

As the pandemic has continued for many months now, it has become clear that the new norms and protocols we have adapted to can be applied to other serious illnesses as well. After all, much of it comes down to decision-making, whether under duress or not.

In conclusion, the Covid-19 pandemic has been a wake-up call for many of us, reminding us of the importance of staying safe and making wise decisions. As we continue to navigate the challenges of the pandemic and beyond, we can apply the lessons we have learned to other aspects of our lives, including managing other serious illnesses.

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
Remarkables in the background.

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

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

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