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Introduction

Please note that the information presented on this site is not intended as medical advice and should not be used as a substitute for professional medical treatment. Always seek guidance from your doctor or healthcare professional.

As you explore the techniques and mindsets discussed on this site, we encourage you to approach them with an open mind, a sense of curiosity, and a focus on your personal well-being. Evaluate each concept with care and a sense of fun and wonderment.

Discover how positive attitudes and small, gradual steps can bring about meaningful change and lead to the best possible outcomes. Join us on this journey and let’s explore the power of the mind together.

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

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

Welcome to LikeMinds, a platform for those seeking to deepen their understanding of life and mental health. Our story is rooted in the New Zealand outdoors and begins in 2014, but it takes a sharp turn with a sudden and unexpected lymphoma diagnosis.

Join us as we share our journey of navigating the complexities of mental health and physical wellness in the face of a rare form of lymphoma. This blog is structured like a book, allowing you to scroll through our story or jump in at any point. Our aim is to provide support and inspiration for others facing similar challenges and to shed light on the power of the mind in the healing process.


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
Queenstown.
Remarkables in the background.

If you landed on a single post instead of the Home Page then click here please to go to Home >>

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 treatment for mantle cell lymphoma
  • The unexpected loss of a friend
  • Back on the Road
  • With important lead up discussions on Hope, Anxiety and Curiosity.
  • Technical Talk
  • Back on the Road part #2
    • Dunedin Chinese Gardens
  • Facing the Music
  • BIG decisions: Crossing of the First Serious Threshold.
    • Coaching on the Road
  • Recommended reading
  • A surprising and unexpected eye development.

Hope

As I waited and watched, contemplating faith, hope, and charity, I sensed that the end was near. My symptoms were becoming more evident, and day-to-day life was becoming increasingly miserable. However, I was still able to sleep well, without experiencing night sweats, a common symptom that I had never had before. It seemed that the perfect storm was brewing.

Hope had not been a significant factor in my earlier cathartic writings. However, my friend Dr. Jim Vause, who has been a great help in these writings, pointed out its importance. During this wait and watch phase of my illness, I had been constructing a 10-point plan to wellness in my head, unsure if it would be 10 or anything in the range of 7 to 12.

Looking back, I realize that hope had always been present, forming the basis for the 10-point plan. Hope is a natural thing that can sometimes be overlooked as a fresh cause for optimism, especially when we are ill and the odds seem against us.

In conclusion, hope is an essential component of any recovery plan, even when the outcome seems uncertain. By recognizing and nurturing this natural source of optimism, we can find the strength to overcome our challenges and emerge stronger on the other side.

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. He was younger and disease-free, which made the news even more shocking.

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

This tragedy was a stark reminder of the fragility of life and the unpredictability of our existence. It made me realize how easy it is to take things for granted and worry about the future, even though we never know what lies ahead.

As I pondered the loss of my friend, I found some small solace in the fact that he was simply off to work that morning, and five minutes later, he was gone. It made me appreciate the present moment more and recognize that worrying about the future is futile.

In conclusion, the sudden and unexpected loss of a loved one can be a powerful wake-up call that reminds us to live in the present and cherish every moment we have. It’s essential to let go of our worries and fears about the future and focus on making the most of today.

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: A Constant Companion in Waiting and Watching

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

During my cancer journey, waiting and watching became a constant state of being.

And with it, anxiety often became my companion. However, it was hardly a welcome one.

I remember a time when I experienced anxiety of a different sort. It was during an incoming storm in a very remote location (photo above – Forgotten River Col in The Olivines. Mt Aspiring National Park). We were exposed and had to act fast. We packed up and descended, only to be faced with another type of anxiety: dealing with hypothermia. It was a longer-lasting anxiety that we couldn’t immediately change.

Despite my condition, I found myself entering a deeply incised and bush-filled gorge, trying to find our way to a safe location. I staggered about like a drunk, but hypothermia had taken me beyond anxiety. We eventually found a safe spot and hunkered down in tents beside a flooded river for a few days. We were weak and food was in short supply, but we kept busy and focused on our next steps.

Being trapped in any situation can trigger anxiety, and this is a big factor in dealing with Post Traumatic Stress. And of course, we’ve all experienced anxiety in many guises, triggered by who knows what!

But during my cancer journey, constant waiting and watching over many months was a different experience. I found myself ill-equipped to deal with this type of anxiety. It took a lot of energy and I struggled to find ways to keep busy.

Looking back, I realized that keeping busy is a good way to manage anxiety. And when the opportunity came, we attracted a passing helicopter that took us to safety. The experience taught me that accepting a situation and keeping busy can help us manage anxiety.

So, when dealing with illness, it’s important to remember that anxiety is a natural response, but it takes energy to deal with it. Keeping busy and focusing on the next steps can help us manage anxiety and maintain hope.

Curiosity

As I went to the Dunedin Hospital, waiting and watching, a subtle curiosity developed in me. I wondered what I could learn from this experience, and what I could do to mitigate the worst outcomes.

Research has shown that curiosity can help alleviate anxiety. Check out this article from Radio New Zealand:

Unwind your anxiety by being more curious >>

I began to welcome the unknown, and started asking myself questions such as:

  • How would it feel?
  • Where would I end up?
  • Could I handle it?

I found that curiosity feeds on itself, and I started to formulate even deeper questions, such as:

  • Did my subconscious decide it was a good idea for my body to host a potentially terminal disease as a distraction from past hurts?
  • Can a person with a terminal diagnosis make a deal with their cancer to look after each other?

I realized that if I was heading into the unknown, I might as well welcome it with curiosity and an open mind. By doing so, I found that I was better able to handle the waiting and watching that comes with a long-term illness.

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:

In February 2019, I began to feel that the waiting and watching period had an expiration date. Coincidentally (or perhaps not), I found out that my routine three monthly checkup was going to be at the nearby Dunstan Hospital.

After driving for an hour, my personal nurse, who was very experienced, conducted the examination instead of my oncologist. She performed the usual hands-on feeling of my lumps, all mapped out by my lymphatic system.

Non-verbal communication was key, and everything I needed to know was communicated without words. Of course, she had to discuss her findings with my oncologist before I could receive official confirmation.

It was now time to consider my cancer treatment options. I knew that a defining meeting would be scheduled next in Dunedin, but it would not be with my “team” – instead, a substitute oncologist was to see me. This was unsettling, so I requested a postponement until my regular oncologist was back at work. To my delight, my request was granted.

I believed that any problems arising from an added progression of the disease caused by a two-week delay would be offset by the fact that trust had already been established. I did not want to compromise 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 again, 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

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

I never really felt courageous, but hey, when embarking on a journey, guides often come with the package. And I knew even then that I had some great ones by my side!

Somewhere along the way placebos and nocebos grabbed my attention. As being a very important factor. It was time to learn about the possibilities.

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 various treatment options. 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 treatment decisions I felt a degree of stress. And now everything seemed more simple. Or was I just settling into the concept of a “long haul”?

I was warned by my oncologist: “the big challenge will be the monthly travel (and other appointments for scans etc.), and if this starts to knock you about I’ll change things”.

For sure I perceived a possible win/win scenario!

PS I quickly learnt that nearly all aspects of my proposed treatment would 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.

Earlier, I overlooked the relevance of disease symptoms manifesting in my lower eyelids. At first, a soft swelling was quite subtle, but as it set in, it became very irritating – it felt like a loose eyelash was stuck under each lower eyelid simultaneously.

When I mentioned it at my pre-treatment clinic in Dunedin, I was told that it was not normal. 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.

A registrar quickly examined me and said, “the disease is present for sure, you need treatment straight away. But hang on while I get a second opinion.” His supervisor then turned my eyelids even more inside out and confirmed the diagnosis, stating that the swelling would go away quickly once treatment commenced. I also learned that the condition was quite serious as it could cause blindness due to undue pressure on the rear of the eye. I was immediately booked in for on-going monthly check-ups.

What surprised me was that they did not wait to pass on the diagnosis/information to oncology before informing me. Rather, they stated, “you need treatment!” This, to me, was a very timely and immediate 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 then click here please to go to Home >>

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”

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 7 – Towards Remission

Was the Hope!

Hope is: 

“A thing with feathers”, Emily Dickinson

Decisions had been made as to treatment options. A plan formulated.

The days, almost frivolous, were about to come to an end. Such days, the equivalent of wine and roses. Across the raw landscape of Central Otago.

What might the upcoming treatments feel like. Bumpy or smooth!

Time Line of This Chapter (March – June 2019):

  • Refining 4wd driving attitudes.
  • Establishing Agency and Resiliency: My ten point plan, turned to fifteen or so.
  • Embracing the urban.
    • PET/CT scan in Christchurch.
  • Wanaka Autumn Art School.
  • The first chemo session.
    • Emptying the mind.
    • Salvation in walking
  • My Green Card.
  • A scary setback.
    • Relaxing reflections from a hospital bed
  • Two great books to read.
  • Techy talk.
  • Decisions (noting less is good).
  • Cycle #2 meeting three nurses, after treatment. And the role of attitude.
    • Patient/doctor relationships.

My mode of transportation to and from Dunedin was my trusty 4WD Land Cruiser camper. On my way to Dunedin, I turned left to take a side track that I had researched, which would lead me higher on the Rock and Pillar Range. However, I soon encountered a muddy bog hole that gave me pause. After getting out to examine it, I suddenly realized that I had no stomach for attempting to tackle it, as I was afraid I might get stuck.

So I turned around, parked, and went for a delightful walk for a couple of hours.

Everything was speeding up at this point. There were many things needing my attention prior to my first treatment. Tests to be done. And as many high quality bucket list experiences that I could fit in.

I knew full-well that my wanderings in the high country would be curtailed for sometime.

To establish a sense of agency and resilience, consider the following steps:

Did I say 10 points earlier? Well with agency established came some breathing room. And the list was enlarged.

  • Visualize success using well-established techniques that athletes use to maximize performance.
  • Reduce cognitive biases or ensure they are not toxic, but rather positive.
  • Increase socialization to improve well-being.
  • Try various styles of meditation, but consider using guided audio meditation.
  • Practice mindfulness to create a daily habit and reduce anxiety.
  • Engage in activities that bring you joy and make you feel fulfilled.
  • Eat a balanced diet that emphasizes whole foods, and snack on nuts and fruits.
  • Learn to breathe efficiently, and practice breathing exercises throughout the day.
  • Exercise regularly and focus on the activities you enjoy the most.
  • Develop curiosity to offset anxiety and foster personal growth.
  • Read great literature to sharpen empathy and cultivate gratitude. Every morning, stretch and make a mental list of everything you’re grateful for.
  • Avoid toxic people and social media to protect your energy and well-being.
  • Don’t waste time Googling your disease in detail, except for links provided by hospital staff or your doctor. They have the training and expertise to provide the information you need.

And just memorise these feelings… bring your awareness
back to a new body… to a new environment… and to a whole new time… and when you are ready, you can open your eyes.

Remember, you are more than a passive recipient of treatments. Invite participation and be an active participant in your healthcare.

Your ability to take action, be effective, influence your own life, and assume responsibility for your behavior are important elements in what you bring to a relationship. This sense of agency is essential for you to feel in control of your life: to believe in your capacity to influence your own thoughts and behavior, and have faith in your ability to handle a wide range of tasks or situations. Having a sense of agency influences your stability as a separate person; it is your capacity to be psychologically stable, yet resilient or flexible, in the face of conflict or change.

Thanks Psychology Today website

Entering the urban world…

Up until now, this whole story has had an outdoor landscape setting. Times change!

The health system had booked me into a motel just 20 minutes walk from the old Square and Cathedral.

I enjoyed not having to drive anywhere (they also arranged a taxi from the airport)! So I made the most of the occasion…

But wait there is more! Dates had been set for the annual Wanaka Autumn Art School.

And this meant I could attend. Squeaking in about a week before my treatments started. I figured that attending was a fine way to get me “out of myself”. Good company and stimulation always wins!

The 5 days were all about portrait
photography, with a bit of landscape
as well.
One of our lovely young models throwing leaves.
Our tutor.

Our tutor, David, from Australia (as mentioned above), was about to give a toast to a recently departed friend. This was a couple of days before our workshop day at Bendigo in Central Otago. I think his plan was to evoke some emotional expressions from us that we could capture in photographs.

With my upcoming schedule in the following week or two, I found this exercise to be quite thought-provoking. From that moment on, I was aware that my body chemistry was about to undergo a change, like a puppet dancing to an unknown tune.

Yes, I was apprehensive! But committed.

Life had been becoming just too miserable!

Time to get better!

◀The current look was not good enough

photo by Tim Hawkins, Cromwell. At the above mentioned Autumn Art School Workshop.

First of many visits to the hospital day treatment room

I arrived at the hospital day treatment room for my first chemotherapy session, and surprisingly, my mind was empty as I waited in the small waiting room. I had made the decision to start this process intuitively two days before, and it turned out to be a valuable decision.

I didn’t have to wait long before a nurse came and led me to the only bed in the room. However, my sense of calm was short-lived as I realized that a bed was not always a good sign.

The process before starting my first IV was more involved than I had anticipated. The nurse asked many questions about my health, allergies, and other medications I was taking. I thought I would receive the chemo IV in my arm, but there were several other medications, including anti-nausea steroids, anti-gout medication, and Panadol, and I lost count.

I had never had a cannulation before, and it was a tricky procedure where a thin metal rod covered by a plastic tube is inserted into a vein in my arm. If it’s not in the vein, the nurse tries to find another vein. This procedure can be uncomfortable, especially if the vein is hard to find and frail.

The plastic tube is flexible and unlikely to cause damage if the patient moves in an awkward position. However, if the flow is interrupted, the electronic pump beeps a warning, and the nurse checks to ensure that everything is fine.

Before starting the real deal, I received pre-medications that caused another 30-minute delay, during which my vital signs were monitored, including oxygen uptake, pulse, and blood pressure.

Finally, the pump was turned on, and I prepared myself for the long haul of 5 to 6 hours on the bed. I soon realized that it was difficult to predict how the first chemo cycle would play out. The nurses configured the electronic pump to deliver the medication slowly, and they cross-checked every step for safety.

Vital signs monitoring occurred every 30 minutes, and the nurses were on the lookout for any lowering blood pressure readings. If detected, delivery slowed down even more. There was a distinct emphasis on being well-hydrated and comfortable too. Overall, the entire process took a long time, but the emphasis on safety and comfort was reassuring.

Then it was time to look around and take in my surroundings. The other patients were in various poses. Sleeping, talking to friends, eating, reading books or on their laptop/device.

Some looked ill and stressed. Others not so, and quite healthy and happy. The mix quite amazed me. After awhile all I wanted to do was sit and watch. And I got drowsy. But the 30 minute intervals of checking my vitals, did keep me interested. I had a vested interest!

A sobering sub story:

As I waited in the hospital day treatment room 3-4 hours into my own treatment, I observed a middle-aged woman sitting opposite me with a few people, presumably family, chatting around her. Suddenly, the tone of their conversation changed – she went quiet, and I could see her skin colour and overall posture changing dramatically. It was a frightening sight.

In a matter of moments, a team of nurses, trolleys, and a doctor appeared on the scene. They swiftly attended to the woman and drew privacy curtains around her. I was left alone, wondering how it would all play out. Twenty minutes later, I heard her talking again, and I was relieved to know that she was okay.

This experience made me realize how quickly the game can change, and how crucial it is to have access to excellent medical resources. I felt reassured knowing that I was in good hands and that the hospital staff was equipped to handle any emergency that might arise.

I also learned that patients are monitored closely, which is essential for their safety. Each time I came to the hospital, I was assigned a dedicated nurse who looked after 2-3 patients at a time. These nurses were trained to cover for each other during emergencies or lunch breaks. I also observed that the engagement and care of one patient could occupy two nurses for an hour. It was interesting to note that there were more female nurses than male, but all were highly trained and efficient.

Overall, the first half of my first cycle had been uneventful, and apart from being careful not to fall over when getting off the bed, I was able to walk back to my hotel. However, I realized that it would have been dangerous to attempt to drive myself.

After returning to the hotel, I attempted to relax on the sofa, but it did little to alleviate the unique misery that I was experiencing. At Robyn’s suggestion, we decided to go out for a meal at a trendy restaurant that I had never been to before. The restaurant had some stunning artwork on display.

Going out for a celebratory meal was a great idea and it made me feel much better.

After the meal I discovered something very useful:

Walking, made me feel much better!

And so it became my feel good habit, for not only the next day, but for the next 30 months of cycles! Dunedin sure can deliver…

My second day of treatment was uneventful. And having proven myself as a robust recipient of treatments it went a little faster.

Then the next day we headed home. And I had a new companion. My own very special green card. e.g If I felt unwell traveling then there is a hospital at Ranfurly on the route home. I’d call in there, and wave this about under everyone’s nose!

Within hours of returning home, the lumps in my lymphatic system started to diminish. This was especially noticeable in my lower eyelids and the touchstone on the right side of my neck. I was thrilled to feel some relief!

One of my nurses remarked, “Looks like you’re having a total response.” This led me to ask for elaboration, and was told that “none” and “partial” were the only ones.

Hearing this news, my morale took several upticks. It was quite amazing.

A scary set back.

After returning home (to new snow on the hills), I started to adjust to a new version of myself when I developed an unusual headache. I immediately suspected something was wrong and contacted my GP. Thankfully, the medications listed on my green card were available, providing me with some reassurance.

I believe that being a proactive patient is essential in the treatment process. Instead of being a passive recipient of treatments, being actively involved is empowering. Although I knew that I would never understand all the technical details, I found that being proactive was possible at multiple levels.

Unfortunately, after a day and a half, my headache worsened, and my temperature rose to 38 degrees. It was a Saturday night, and I had to see a young doctor who wasn’t familiar with my green card. As I felt that I would have to become more assertive, my GP arrived, and we were soon back on track.

I was given a saline IV and transported by ambulance to Dunstan Hospital, an hour’s drive away. Going backward in the dark on a road I was familiar with felt strange, and the ride was bumpy, which was surprising.

Upon arriving at the hospital, I was immediately placed in an isolation room, and my blood was taken. My skin was also photographed, and the image was sent to Dunedin as the doctors suspected I might have measles. The duty oncologist recommended that I should not be given any more of two oral medications. Fortunately, my blood tests came back good, and I did not have neutropenic sepsis.

In summary, being a proactive patient is vital, especially when experiencing a setback. Although it can be intimidating to take an active role in your treatment, doing so can provide you with peace of mind and ensure that you receive the best care possible.

This was the view the next morning. The Old Man Range not quite visible.

I’d had quite a good sleep, and was starting to feel better. The quietness of the room and a cottage hospital atmosphere really helped! There were 2-3 doors nurses had to pass through even. And with PPE – well it was hard to see who was who.

More tests were ongoing. But turned up nothing. So it was diagnosis by subtraction!

To my delight though I did know one of the nurses.

When Emily was a young girl, her dad a very experienced bush pilot flew a few of us into Marks Flat a few times, to climb Mt Hooker (still not done after about 80 days in the area).

I was starting to feel quite at home at Dunstan Hospital!

Breaksea Girl

◀ I mentioned hospital art in chapter 4. And since then my awareness received an uptick and I’ve been on the look-out. I loved seeing this example as I’ve over-nighted on a yacht in Breaksea, enroute to Dusky Sound in Fiordland.

Again this was something that made me feel at home. As far as I’m concerned art and beautiful surroundings promote wellness. Not just of the patient and family, but also the health professionals.

On my last night in Dunstan Hospital I was allowed and able to do a walk in the rain into Clyde township. This was a real morale booster, that reinforced being grateful. And acknowledging same.
My favourite dolphin image. By my son. A reflected selfie on leaving Breaksea.

And about a week after my discharge from Dunstan Hospital, I’m looking more like my original self.

My health had reached a Tipping Point. This book gives some very astute examples. Not health related, but there are parallels.

My reason for including this recommended reading is that sometimes massive change can be effected by a very small change, or a series of. If life is looked upon as a trajectory then just one astute change can alter it.

The Tipping Point: How Little Things Can Make a Big Difference is the debut book by Malcolm Gladwell, first published by Little, Brown in 2000. Gladwell defines a tipping point as “the moment of critical mass, the threshold, the boiling point.” The book seeks to explain and describe the “mysterious” sociological changes that mark everyday life. As Gladwell states: “Ideas and products and messages and behaviors spread like viruses do.”The examples of such changes in his book include the rise in popularity and sales of Hush Puppies shoes in the mid-1990s and the steep drop in New York City’s crime rate after 1990.

From Wikipedia.

The author’s website >>

Up until treatment was underway, my sense of health progression had been decidedly linear. But then it changed. And this amazing story outlines probabilities and possibilities for us all. One of the most beautiful books I’ve ever read. Memorable!

God’s Hotel. By Victoria Sweet.

San Francisco’s Laguna Honda Hospital was the last almshouse in the country, a descendant of the Hôtel-Dieu (God’s Hotel) that cared for the sick in the Middle Ages. Ballet dancers and rock musicians, professors and thieves — “anyone who had fallen, or, often, leapt, onto hard times” and needed extended medical care — ended up there. Dr. Sweet ended up there herself, as a physician. And though she came for only a two-month stay, she remained for twenty years.

The author’s website >>

I wanted my son to have a copy of this book for Christmas, but it was not readily available in New Zealand. However the University Bookshop in Dunedin imported a copy for me.

Technical Stuff:

For my first 6 cycles (every 28 days), I had rituximab on the first day and then bendamustine on the second. Followed by the antibiotic pentamidine (since it was suspected that a similar oral antibiotic medication, led to the hospital admission as above).

As time went by I found I did not need auxiliary medication so much, e.g. anti nausea. Or dextromethadone etc.

Decisions I had to make during and between every treatment cycle:

Before arrival at about 10 am each treatment day I had to decide what I’d like for lunch. And purchase same as I walked to the hospital each day. Thirty five minutes if I bypassed the Gardens and University campus. Usually I took the longer more scenic route. And especially on the return, as I was so slow post IVs. But it felt very good to just amble. Yes, walking for me was “the thing”

Monthly decisions just came down to how best to incorporate rest in my daily routines, and how best to pace the travel.

The next visit to Dunedin for Cycle #2

Upon arriving for my second cycle of chemotherapy, I was met by three nurses, two of whom had been instrumental in my previous treatment. They immediately noticed the difference in my appearance, with a new, non-lumpy face and neck, and expressed their approval with a smile.

As they congratulated me, I thanked them for their hard work and skill, but they insisted that my attitude played a significant role in my recovery. I was skeptical at first, but as I continued with my treatment over the next several months, they repeated this sentiment, and I began to take notice.

One day, a theater surgery nurse who had turned to oncology day treatment ward shared some stories with me while monitoring my progress. She elaborated on the concept that they had seen this before, and that it could take decades to understand the phenomenon.

At that moment, I realized that my experience was not linear but rather nonlinear, and I became curious about the power of the mind. This curiosity eventually led me to research and write about the power of both the conscious and unconscious mind.

In conclusion, the support of my nurses, coupled with my own positive attitude, played a crucial role in my recovery. The power of the mind is a fascinating subject that requires further exploration, and I am grateful for the insights I gained from my experience.

There are some interesting concepts that sit behind the doctor patient relationship, for grasping both of these concepts are central to humility both for the carer and the cared. For the treated and the treater.

One of my articles in my blog NZdoctor (a subscriber model) focuses on the conspiracy thinkers in my profession.  But also guides being humble as a doctor as to how much we do not know. And therefore for making sure we don’t drift into the helpless (where sympathy rather than empathy drives behaviour). Or god forbid (a stupid statement for an atheist) into being a bandit, for whenever money comes into treatment, it is very easy to do so. 

Thanks Dr Jim Vause – GP emeritus, for the above.

If you landed on a single post instead of the Home Page then click here please to go to Home >>

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

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

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 9 – Maintenance Chemo ongoing

Understanding Ongoing Maintenance Chemo for Cancer Treatment

6 cycles of chemo done. 24 to go!

Time Line of This Chapter:

Feb 2020 – Oct 2021

  • The challenge of maintenance chemotherapy over an approx. 24 months.
  • The words of a folk song and their effect on my thinking.
  • Taking responsibility after chemo.
  • Looking at the various brain wave frequency lengths associated with stress, sleep, mindfulness and meditation (which includes prayer).
  • Two complimentary books to read.

After completing six cycles of chemotherapy, I still have 24 more to go! But maintenance chemotherapy is like a superhero for my body. It uses its superpowers to seek out and destroy any remaining cancer cells that may still be lurking around after the initial treatment. It’s like a crime-fighting one-man-band, but with a lot more science involved! By targeting and killing any remaining cancer cells, maintenance chemotherapy helps ensure that they don’t have a chance to come back and haunt me.

The initial treatment, which involved a grueling six months of the intense combination of rituximab and bendamustine, was finally over. However, it took an additional three months for the full effects to dissipate, but of course, everyone’s experience is unique. Speaking of Rituximab, it’s also known by the brand name Rituxan and is used to treat various autoimmune diseases and types of cancer.

Maintenance treatment, on the other hand, was a breeze in comparison. Every two months, I had to take my dose intravenously (every two months instead of every one), which worked out to be just under two months (28 days times two cycles). The first few cycles were a piece of cake compared to the initial six, but as time went on, I found myself feeling more and more run down and brain-fogged.

Another thing that was part of my maintenance treatment was an IV of pentamidine every month to keep me safe from pneumonia, as by this time, my immune function was probably poor. Pentamidine is an antibiotic that is very slow to administer. The veins do not like it done fast, so 300 ml. would take almost five hours, which gave me plenty of time to read, chat with other patients, or sleep.

What I found interesting during the whole chemo treatment was that afterwards, well-meaning people would comment on how well I looked. This was in contrast to how I was feeling. All I can say to this is that I think chemo sort of induces a flush of wellness. Within each cycle, there were sub-cycles, and it would take me about four days to bounce back from each one. But as mentioned, they did wear me down somewhat. Whether or not I had a flush of wellness and rosy cheeks, the treatment was still taxing.

One bonus was that while each rituximab had to be done in Dunedin Hospital, the pentamidine IV (only it, on the alternate months) could be done at the nearby Dunstan Hospital. This meant an hour’s drive as opposed to four hours. The “feel” of Dunstan is that of a small cottage hospital, quite different from Dunedin’s city-style feel. And more relaxing, with its views out of the window being more in keeping with nature. Healing in its own right!

However, on the drive home from Dunstan, more often than not, tiredness would overcome me. So I learned to take a slightly longer route home on the other side of Lake Dunstan. Just before the Lindis River that runs into the head of the lake, I’d stop for a nap under the shade of willows. It was very welcome during the intense summer days.

"Spirit of Hope" rose, in Dunedin Gardens.
“Spirit of Hope” in Dunedin Gardens. On my usual walking route to and from Dunedin Hospital.

One up two down…

The whole maintenance chemo experience reminded me of the lyrics of a folk song written by my friend, the acclaimed composer/singer, Martin Curtis. Until recently he lived up the nearby Cardrona Valley.

I think of the song as, One up, two down… and the song would roll on at quite a pace.

And that’s how chemo felt! For every one I’d feel a gain, but as time went on I’d feel slippage back. But not to a non-remission state – it all related to the effects of the ongoing treatments. I used to wonder if my body would tolerate them forever. Maybe, maybe not! I guess the cut off point of 24 months was in light of the experience of others.

James Patterson purchased the Cardrona hotel and became a local legend. Known as Jimmy, he owned the hotel from 1926 until his death in 1961 at the age of 91. Making him the longest serving publican in Cardrona.

He was famous for controlling the amount his patrons could drink. It would depend on which direction they were traveling. Men going up the valley over the Crown Range were only allowed one drink. While those traveling down valley to Wanaka were allowed two. (He preferred to not supply any alcohol to women).

A late snowfall early Oct. 2020. Chemo or no chemo I was still getting about. Simply enjoying all on offer. But no drinks – no one up or two down!

Research has shown that 80% of the decisions we make come from our subconscious conditioning and beliefs. Our egos may not be too thrilled with this concept, as it undermines the persuasive power they can work with. However, despite this, we still deny this research!

Percentage and first paragraph attributed to neuroscientist Dr. Joe Dispenza. And echoed by other prominent figures in the field of neuroscience, including Dr. Bruce Lipton, Dr. Norman Doidge, and Dr. Daniel Amen.

And I’d add to this statement quoted earlier:

  • “our thoughts affect our immune system”,

to

  • “our thoughts, especially our subconscious and unconscious ones, affect our immune systems”

Taking responsibility:

About halfway through my maintenance chemo I had thought and asked myself, “is this repetitive chemo keeping me alive and relatively healthy?”

The next thought was, when the chemo ends then I’ll be by myself, having to draw on whatever I can muster of my own resources.

Intellectually I know I will not be abandoned by the health system. So I held that thought.

But there is something very empowering about taking extra steps towards the best probable outcomes. And in going there – taking on the work. Taking responsibility to new levels possible from a solid base of remission.

What unfolded next was a real ‘shot in the arm’ for me: I asked my lovely oncologist if I could have a second round of counseling and therapy, just like I’d done after my initial (potentially terminal) diagnosis/prognosis.

And, to my delight, she again said “Yes, sure!” (Taking up the story of the second offer will be the beginning of the next chapter of my saga.)

On the first occasion I was fortunate enough to benefit from regular sessions with a very experienced (and grandmotherly!) counselor for a little over a year – right up until the moment she retired, shortly before I began my first six intense treatments.

You could say it was about learning about how to die well, even. But the substance that had a lot to do with empowering me had aspects such as the personalities of my parents, and how they built my beliefs, my stories – and, apparently, my future too! All jokes aside, I’m grateful to my parents for all they taught me – it really did help me to accept death as part of life.

Fortunately back then, after each session I was fit enough to bike from Clyde’s Dunstan Hospital, to Alexandra down the start of the Otago Central Rail Trail, through Alex., and back to Clyde via the shaded and sometimes swooping River Trail, on the true right of the Clutha.

Perfect for self debriefing!

Meet the locals on the River Trail.

A common narrative of the day

Let me take a few moments to ponder the narrative of the day, that stress is often considered a cause of cancer and tumors. And that mindfulness and meditation can help to handle the illness and its progression. And of course the effects of treatments.

I’ve had so many messages telling me that practicing mindfulness and meditation are the bee’s knees – but very little information on the “how” and “why” of it all. I’m particularly curious because I’m the kind of personality type that finds reassurance in understanding processes – so I’m hoping to get some answers soon, before I go completely bee-zerk!

As for the immediate me, I’m potentially a living testament to the power of something beyond positive thinking. Having been told I’ve achieved remission through my attitude… That said, I’m not suggesting that I have the panacea or that everyone can rid themselves of cancer with a smile, or the below – but I think it’s certainly worth giving it a try! After all what constitutes attitude?!? Noting especially that if a negative outcome starts to set in, it’s not a good idea to beat ourselves up either. Again consult the relative medical experts.

Looking at the various brain wave frequency lengths associated with stress, sleep, mindfulness and meditation (which includes prayer).

A synopsis of all I’ve read:

Brain wave frequency and amplitude can have a significant effect on healthy gene expression and the production of new cells. The frequency and amplitude of brain waves can influence the release of hormones and neurotransmitters, which in turn can affect gene expression and cell growth. Brain waves can also influence the activity of enzymes involved in gene expression, which can further affect the production of new cells. Therefore, the frequency and amplitude of brain waves can have a direct impact on healthy gene expression and the production of new cells.

The brain waves that are related to stress are Beta (13–30 Hz) and Alpha (8–13 Hz). Beta waves are associated with alertness, concentration, and stress, while alpha waves are associated with relaxation and meditation. Low beta keeps the automatic processes that run our bodies on track. High is often referred to as “monkey brain”. And to my mind the state to recognise and then exit stage left!

Alpha (8–13 Hz). Then there is Theta (4–8 Hz), Delta (0.1–4 Hz) and Gamma (30–100 Hz). Alpha waves are associated with relaxation and meditation, theta waves are associated with deep relaxation, dreamless sleep, and creativity, delta waves are associated with deep, dreamless sleep, and gamma waves are associated with heightened focus and problem-solving.

What is relevant to myself is that (intuitively) from 2017 onward until today Jan. 2023, is that I regularly meditate, using guided audio, that is designed to facilitate alpha. Which is thought to be the bridge that connects them all. And before that… well 12 years of yoga 1-3 hours a week. This is how I roll, knowing it won’t be everyone’s cup-of-tea.

Following on from my evolving thoughts on brain wave frequency lengths as they relate to stress, mindfulness, sleep and meditation , I then researched this question: Can aged genes and cells turn into cancer tumors?

Yes, aged genes and cells can turn into cancerous tumors. Cancerous tumors develop when damaged or aged cells grow and divide in an uncontrolled manner, forming a mass of cancer cells. Aged genes, which can be caused by environmental factors and/or genetics, can cause mutations in the cells that can lead to cancer.

Can the expression of beta brain wave frequencies interfere with the destruction of aged genes?

No, the expression of beta brain wave frequencies cannot interfere with the destruction of aged genes. Beta brain waves are associated with alertness, concentration, and stress, and their expression does not impact the destruction of aged genes. However, beta brain waves can influence gene expression and cell growth, which can in turn affect the production of new cells and the destruction of aged cells.

Much of the above distills what is covered in detail in these two complimentary books below. I used artificial intelligence software to save myself a lot of compilation and summary work with correct grammar. Thankfully as a cross check on facts the match was near identical:

I loved how every topic has references back to the research.

Best Health Book of 2018 – American Book Fest. Best Science Books of 2018 – Bookbub. Every creation begins as a thought, from a symphony to a marriage to an ice cream cone to a rocket launch. When we have an intention, a complex chain of events begins in our brains. Thoughts travel as electrical impulses along neural pathways. When neurons fire together they wire together, creating electromagnetic fields. These fields are invisible energy, yet they influence the molecules of matter around us the way a magnet organizes iron filings. In Mind to Matter, award-winning researcher Dawson Church explains the science showing how our minds create matter.

By Dawson Church

This is a book that I plan to reread, and come back to often as an inspiration.

The New York Times bestseller everyone is talking about.

By tapping into traditions of meditation and mindfulness, author and spiritual teacher Michael A. Singer shows how the development of consciousness can enable us all to dwell in the present moment and let go of painful thoughts and memories that keep us from achieving happiness and self-realization.

The Untethered Soul begins by walking you through your relationship with your thoughts and emotions, helping you uncover the source and fluctuations of your inner energy. It then delves into what you can do to free yourself from the habitual thoughts, emotions, and energy patterns that limit your consciousness. Finally, with perfect clarity, this book opens the door to a life lived in the freedom of your innermost being.

By Michael A. Singer

A Reminder..

This is written with the best of intentions, but let’s be clear – I’m not claiming to have found a miracle cure for serious illnesses. Far from it. Instead, I’m just sharing my own experiences and throwing out a few ideas, all with the goal of promoting good mental health. Who knows, maybe it’ll even have a positive impact on our physical health too!

Alexandra in Central Otago. My camper truck lower left. Near Shaky Bridge.
Student flats in Dunedin. Full of colour but not as visually enticing as the abodes in Alexandra. Walking my very own (El)Chemino trail!

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BTW current state of health, as of Jan 2023, is pretty good!

The next post/chapter will be titled something like, “Acceptance and Committment”

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