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.
Countless friends and family and medical professionals (oncology in Dunedin Hospital) are helping me on this journey.
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. 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.
What a winter it has been, as the years roll by since my life-changing diagnosis in 2017—a moment that, like many others before me, marked a profound shift in my life after receiving the difficult news of cancer.
Current state of health, as of October 2024, is pretty good! I’m just back from the latest 4 monthly clinic in Dunedin. The clinical trial continues 🙂
Time Line of This Chapter:
April – October 2024
The Wisdom of Acceptance.
A taste of death by a thousand snow flakes.
Working in the mountains again
A classic read on spirituality
What Nemo taught me
Book recommendation on Zen
ACT the ongoing journey
Last Words – For Now
In 2017, while sitting in my truck at the Snow Farm car park, I took a deep breath and called my local medical center for an appointment with my long-time friend and GP, Andrew. I delayed mentioning the lump in my groin until the last of the three concerns I wanted to discuss.
Andrew didn’t sugarcoat it—the news wasn’t good, and I appreciated his directness, knowing me well enough to cut to the chase. That winter became the season of change and acceptance, marking my first decision on this journey.
Looking back, I realize that choosing acceptance was the easiest decision I could make at that moment. Taking action has always been empowering for me, but I understand it’s a decision many struggle with. Andrew agreed, noting that his patients who embraced acceptance rather than fighting or battling the illness tended to fare better. Another point he made stuck with me: opting for treatment through our New Zealand health system statistically gives patients the best chance of regaining their health.
The winters flew by. I continued to enjoy many cross-country ski tours at the Snow Farm, even during my treatment.
I met fellow skiers like a woman with advanced breast cancer, diagnosed around the same time as me (sadly she has since passed on), and Graeme, who was in remission from prostate cancer. Graeme was there because we had met years earlier at Aspiring Hut, and I had introduced him to cross-country skiing (nearby Wanaka) as a way to learn about the snowpack for mountaineering and tramping.
Up the valley from Aspiring Hut is French Ridge Hut, accessible by a long, steep, and arduous climb from the valley floor into the alpine zone. It was on that climb, many years before, that I first encountered the values inherent in acceptance. But at the time, I didn’t feel like I had much choice.
French Ridge track starts just where the light on the gravel gives way to shade, and ascends to the hut at the top end of the grass in the light. This photo is taken from Shovel Flat, Mt Aspiring National Park.
The climb to the hut takes two to three hours from the valley, with several false summits—humps on the ridge that trick you into thinking you’re almost there, only to reveal yet another ascent. I knew this from previous visits, but on that occasion, around 2004, it was particularly humid. Three-quarters of the way to the bush line, I realized I had heatstroke or heat exhaustion.
Mistake number one was continuing upward. I rationalized that I could rest at the tree line, rehydrate, eat, layer up, and get my headlamp ready for the next very exposed section. As dusk approached (mistake number two), I set off again at a slow pace. An hour later, the wind picked up, and to my horror, it began snowing horizontally. My headlamp was nearly useless in the blowing snow, and I realized I might not find the hut, with no shelter on the ridge.
Over the years, I’d had a few close calls, but they usually passed in seconds. This time, the situation stretched on, and so did my thoughts. I recalled the mountain wisdom: mistake number three often leads to a fatal outcome (the trick in all this is to know when you’ve made #1 and #2!). If that was my fate, it would be death by hypothermia/exposure, alone in the dark. However having had a couple of near misses as a young man I do know, you don’t know it’s onset, and dying I think would be peaceful along with a confused mind and uncoordinated body (the trick in this one is recognising the conditions of wind/rain that can bring on loss of core body heat, and layering up/eating/getting out of the wind, at that point).
Acceptance wasn’t something I chose that evening of folly—it just happened. I slowed my pace even further to conserve energy while generating enough body heat to survive. Hump after hump passed, and mentally, I entered a calm, detached state. I never thought it at the time, but if there is a third eye (intuitive seeing?) it was engaged also. I’d experienced this before in relation to route finding in the dark in the mountains, more than once. It’s quite the tool to have in the toolbox!
All this, I much more recently realised, is the power of acceptance—it relaxed me and allowed me to keep going. In the zone, where 110% concentration works in conjunction with a slowing down of time. A wonderful place of commitment and pure magic. It’s also worth noting that the breath played a huge role in the outcome. I’d gone uphill on enough mountains to know that doing it right gets us there with more energy to spare on arrival. What I’ve learnt since through ACT therapy is the calming effect and that when anxiety is put aside we have a much more holistic view of what’s going on around us and within. Then (often later for the refined version) the story we create about the event is less fragmented, and because of this more accurate (and as I recall and write this one I’m inclined to think it is pretty accurate).
Finally, through the wind and snow, I spotted something unnatural: the corner of the hut’s toilet roof. At that moment, I came back to myself, coming back to, “of this world”! But exhaustion hit hard too. I was only 50 meters from the hut, but I sat down against a rock, not to sleep but to rest. As I marveled at the snow-filled night, I reflected on how my mindset had shifted out of survival mode instantly. It was a profound experience., especially the speed of change (I refer here to buying into, or more like, being forced into acceptance at the bush line as dusk was gathering, as well as at the moment I knew I was safe).
Imagine if…
The brain’s ability to forge new neural pathways can happen incredibly quickly, almost instantly. But I also note it can take a long time and some hard work—maybe one’s previous life experiences inadvertently prepare us/the brain, as in the French Ridge folly!? Or the situation dictates it.
So I wonder: if we can so swiftly shift our mindset, how might that impact a disease like cancer, or affect the treatments? Could opening those mental doors somehow influence the healing process? I do know that for sure when I walked into the oncology day unit for my first download, my mind was as open as I could make it. I had accepted stepping into the unknown. Looking back I think I went a few steps further! And that may have changed the chemistry in ways that made a total response to the first (traditional chemo) treatment possible. We just don’t know as I can’t go back and make different decisions. It’s an unknowable scenario!
But then what role, exactly, did acceptance play in my rapid remission? I like the word “stumbled” because, looking back, I think I repeated the French Ridge experience in my own cancer story—it just took much longer to unfold. Does moving beyond mere acceptance lead to healing opportunities we may have previously overlooked, or that science has yet to discover? Perhaps then the best approach is to explore each door we’re offered, while also embracing the incredible support, with accompanying success rate provided by our health system.
French Ridge hut. As viewed from the toilet!
I stayed an extra night at the hut to recover. Rain had made the bush track slippery and risky, but more importantly, heat exhaustion damage takes time to heal.
French Ridge hut (from French Ridge) is out of sight top left. Gloomy Gorge to the right. A place very difficult of access!
By the time of my cancer diagnosis in 2017, I had mostly forgotten that experience, but subconsciously, it was still with me. Now I see that some traumatic experiences can be valuable, even transformative.
Fast-forward to December 2023, when a fortuitous opportunity arose: The Snow Farm needed a hut caretaker, so I applied and got the part-time, year-round job. As autumn progressed, I took on solo work, maintaining the four huts and helping with the final construction of a new base building before the ski season.
This led to the wonderful experience of working with about 24 seasonal staff from all over the world, most in their 30s, and 60 percent of them women.
Among them was an oncology nurse, and we had some deeply insightful conversations about acceptance. I learned how common it is for people to deny acceptance, right up to the end, turning their experience into a battle that consumes energy and resources that could be better used elsewhere.
This experience reminded me of a book I had read years ago, which touched on how sages approached death—not through suicide but through acceptance. A knowingness even of when to leave (their body):
I’ve just finished reading this book for the 2nd time. It’s very fascinating and thought provoking. The stories/anecdotes are so “out there”, I can’t imagine anyone could make them up! Great insights also into what came before the world’s great religions.
Living with the Himalayan Masters
“One of the great spiritual classics of all time. An insider’s view of hidden adepts who live outside time and space as we know it, yogis and yoginis who can’t possibly exist–but do!”
-Linda Johnsen, author of The Living Goddess: Reclaiming the Tradition of the Mother of the Universe
Another unexpected and more recent valuable lesson:
What Nemo taught me
A cat I’d looked after and got very close to had to leave. Health issues. A very sad and poignant saying goodbye – his last few cuddles were on my lap, prior to his last visit to the vet. Middle aged and affected by a previous encounter with a car Nemo taught me the following:
Set boundaries (patting his damaged rear end would elicit an attempt at biting – don’t go there!).
The value of play (see photo). His reaction times were incredible.
Knowing when to do nothing (he’d watch a bird close by but never attempt to catch it. He knew he could and he was so fast in play he could have easily done so, but never did).
The importance of being social (any human visitors, he’d be there wanting to be involved. Not looking for pats or tickles, but simply to be part of it). If ignored he’d get quite offended and wander off.
Nemo never had a sense of entitlement! Unlike many cats I’ve known.
That mixing with school children walking to school was good for his health.
Non engagement (again do nothing). (Once by his home door/pathway he was in an exposed position and a dog went by, oblivious. Nemo simply ducked behind a potted plant and quietly waited until the threat passed)
He knew how to give love (unlike many cats that demand same). He was uncanny in this respect. Near the end he’d sometimes retreat to a walk-in wardrobe (to die it was realised), but would always return to the love he knew he was part of. And that he deserved.
Before I met him he knew when to leave a less than suitable relationship (he was with a house full of noisy children and two dogs – his owner when found was really glad he’d found a new place to live).
Being curious (helps off-set anxiety I’ve found – he was always so interested in many things – it seems he drew things to himself deliberately)
RIP Nemo (aka Puss)
I saw this title in the University Bookshop in Dunedin and I purchased same. Having known Nemo was the motivation for purchasing! Very artistic Japanese art inspired graphics too, and a lovely read. A book it’s nice to own!
The Cat Who Taught Zen
From author of Big Panda and Tiny Dragon, a new adventure featuring a wise cat, a curious kitten, and the Zen wisdom they uncover on their journey together. This is the tale of a cat wise in the ways of zen who hears of a solitary ancient pine, deep in a maple forest, under which infinite wisdom may be found.
Acceptance and Commitment Therapy (ACT) — The Ongoing Journey
Since finishing my formal ACT sessions in June 2024, I had intended to review my notes, but life had other plans. Instead of revisiting the past, I found myself diving deeper into the present. It’s as if the universe sensed I was ready for more—and not in the way I expected. I became busier, but not in a burdensome sense. Instead, life started unfolding in fascinating ways, with serendipity and coincidence appearing more frequently. This added richness to my daily experiences.
I always knew that questioning my beliefs, biases, and values would lead to growth—usually for the better, though discernment is crucial. What I hadn’t anticipated was how others would change their approach to me. In subtle but significant ways, people began presenting themselves with a different energy, and their shifts triggered changes in me too. These moments affected how I reacted, sometimes leaving me unsure where to focus my attention, even in terms of writing for this blog.
As seasons change—especially in winter, with its new dampness and corresponding snowpack changes or even shifting perspectives on climate change—so too does my inner landscape. I’ve encountered more of what could be called “suffering” in the world around me, though I acknowledge I can never fully understand another’s pain. Meditation, in a form that resonates with me, has become my default mode. It’s been fascinating to witness the uptick in my capacity for empathy and compassion, not to mention how much easier it has become to stay grounded.
I now find myself stepping back more often, observing situations without getting drawn into the emotional whirlwind. This shift allows me to maintain a broader, healthier perspective. I don’t feel the need to react to everything. Sometimes, all that’s required is to listen deeply to another person and ask the occasional yet simple, clarifying question. This helps me figure out where best to invest my energy to get the most meaningful results, both for myself and those around me.
Last Words (for Now)
The change in energy from others has started to influence my relationships in profound ways. I’m sensing more authentic connections, which feels refreshing.
I plan to expand on my observations of serendipity, as this seems key to exploring how ACT has heightened my awareness of life’s interconnectedness. To do so, I realize I’ll need to become more open—starting with myself, to myself! I’ll address openness with others as the process unfolds. Not long ago, I believed I had always shared enough of myself with others, but I now see that I was mistaken. I’ve been closed off, to my detriment and theirs.
The ongoing question is how this personal growth aligns with my larger life goals and values. How do these shifts support my overall vision? Note to self: values is the keyword!
BTW current state of health, as of October 2024, is pretty good! I’m just back from the latest 4 monthly clinic in Dunedin. The clinical trial continues 🙂
The next post/chapter will be titled something like, hmm, well I’m not sure yet!
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.
Navigating Illusion and Truth in Life’s Stories relating to Acceptance and Commitment Therapy:
Since my last post some time ago, I’ve been astounded and uplifted by the broadening of my perception. I suspect it’s the aftermath of chemotherapy—the lifting of a fog! Meanwhile, my ongoing coaching sessions utilising Acceptance and Commitment Therapy sit nicely alongside my remission, which may eventually be labeled as a cure. Fingers crossed!
Time Line of This Chapter:
July 2023 approx – March 2024
Exploring the validity of memory based stories.
An unexpected phenomena around illusions.
Veiling
Projection
Transcendence via art
Hindu based concepts of māyā
Christian based concepts of māyā
Book recommendation
More books
The Last Word: Historical perspectives
Experiences so intense:
Over the past several months, guided by professional support, I’ve delved into my memories surrounding my divorce a bit over a couple of decades ago. This exploration has led me to revisit numerous recollections from the ten years leading up to the final days of my 18-year marriage. Now, I’m even journeying back further to childhood, where many beliefs were instilled in me by my loving parents.
Ah, the complexities of life – like trying to solve a Rubik’s cube blindfolded while riding a bicycle. If you’ve ever found yourself pondering the mysteries of existence while simultaneously wondering why socks un-pair, you’re not alone. Welcome to the merry-go-round of philosophical musings and everyday absurdities that make up the human experience
Along the way, I’ve come to understand that we construct our stories from fragments. These fragments often stem from experiences so intense, their memories are etched in fragments, too. Science tells us that when our heart rate exceeds approximately 150 beats per minute, our self-awareness narrows dangerously, leaving us to grasp only fragments of the experience. This phenomenon is why many law enforcement agencies worldwide now forbid car chases by officers—it’s not only the chase itself (incredibly dangerous, of course) but also the potential actions of the officers once the chase concludes.
Reflecting on my extensive library of stories, I’ve concluded that many are superficial, perhaps self-serving, and quite selective. Critical thinking and deeper exploration of their origins could have rendered them more accurate. Being open to alternative narratives and weighing them against our own would serve us better—a quest for a balanced perspective.
This realisation has lingered with me for months, accompanied by the nagging thought, “How could I have been so deceived in some cases?”
So, in the last few weeks, thinking that if I’m going accept my experiences (in therapy and otherwise), my commitment must be to ensure their accuracy. On this score then I found myself revisiting and rereading sections of…
To quote Joseph Campbell, the acclaimed author of numerous books on mythology, there’s an “Indian term for ‘illusion,’ māyā—from the verbal root mā, ‘to measure, to measure out, to form, to create, construct, exhibit or display’—referring to both the power that creates an illusion and the false display itself.
The goal of life is to make your heartbeat match the beat of the universe, to match your nature with nature.
Joseph Campbell
Māyā may remain an enigmatic and multifaceted phenomenon, however lets explore it:
Campbell elaborates on three key points concerning māyā, which intertwine with my journey and understanding.
A Veiling Power. The “real” is concealed or hidden. The inward essential character of things is not obvious at all.
An example he gives is when we fail to see the likes of white light, when it is broken into rainbow colours with a prism. The colours to my mind become a distraction. The phenomena seems deliberate even.
A Projecting Power, which sends forth illusionary impressions and ideas. To my mind we can be the unwitting recipient of this power, or we can project our own illusion onto a situation. Take your pick! Either can be valid, or a mix.
The projection manifests along with associated desires and aversions. Campbell uses for example that at night, “one could mistake a rope for a snake and experience fright. Ignorance (the Veiling Power), having concealed the real, imagination (the Projecting Power) evolves the phenomena”. The prism becomes not only the veil, but the projector.
Transcendence! In the context of Joseph Campbell’s interpretation of māyā and its relationship with art, the idea is that art has the potential to transcend the illusions and veils that māyā creates, revealing deeper truths about existence and human experience. Here are abbreviated examples that illustrate how art serves this revealing power:
Literature: Novels, poetry, and plays reveal truths about human experience and societal structures.
Visual Art: Paintings and sculptures use symbolism to communicate profound meanings.
Music: Melodies and lyrics express universal emotions and existential themes.
Film and Theater: Movies and plays explore existential questions and moral dilemmas.
Dance: Choreography conveys themes of unity and spiritual awakening through movement.
If the doors of perception were cleansed, everything would appear to man as it is, infinite.
William Blake ~ The Marriage of Heaven and Hell
Here’s a breakdown of the Hindhu concept:
Illusion of Reality: Māyā suggests that the material world we perceive is not the ultimate reality but rather a temporary and illusionary manifestation. It is often described as a veil that obscures the true nature of existence.
Creative Power: Māyā is not just about illusion but also about the creative power that brings the illusion into existence. It is the divine power that manifests the world and sustains the cycle of creation, preservation, and destruction.
Samsara: Māyā is closely tied to the concept of Samsara, the cycle of birth, death, and rebirth in Hinduism. The illusion of the material world keeps individuals bound to this cycle until they attain liberation (moksha) by transcending māyā.
Understanding Reality: According to Hindu philosophy, transcending māyā involves gaining true knowledge (vidya) that allows one to see beyond the illusion and recognize the underlying unity of existence.
Despite the absence of a direct equivalent concept, exposure to Catholicism during childhood prompted this overview:
It’s important to note that Christianity and Hinduism have distinct theological frameworks and perspectives on the nature of reality and the human condition. The concept of māyā is deeply rooted in Hindu philosophy and cosmology, while Christian theology approaches these questions from a different standpoint.
Original Sin and Fallen Nature: In Christian theology, the concept of original sin suggests that humanity is born into a state of spiritual separation from God due to the disobedience of Adam and Eve in the Garden of Eden. This separation from God can be seen as a kind of spiritual illusion or distortion that affects human perception and understanding of reality.
The Veil of Ignorance: While not a formal theological concept, some Christian mystics and philosophers have discussed the idea of a “veil of ignorance” that separates individuals from direct knowledge or experience of the divine. This veil obscures the true nature of reality and can be seen as analogous to the concept of māyā in Hinduism.
The Illusion of Materialism: Christianity teaches that material possessions and worldly pursuits can distract individuals from their spiritual purpose and lead them away from God. This illusion of materialism may be compared to the concept of māyā, which suggests that the material world is ultimately illusory and not the ultimate reality.
The Role of Faith and Revelation: Christianity emphasises the importance of faith and divine revelation in understanding spiritual truths that may not be apparent through empirical observation alone. This resonates with the idea in Hinduism that transcending māyā requires spiritual insight or realisation rather than mere intellectual understanding.
This book will take anyone keen on the subject to a very comprehensive overview on the art of living.
“The Power of Myth” is a captivating dialogue between Joseph Campbell and journalist Bill Moyers, where they explore the timeless relevance of mythology in human life. In the book, Campbell discusses various aspects of mythology, including the universal themes and symbols found in myths from different cultures, the psychological and spiritual functions of myth, and the significance of the hero’s journey as a metaphor for personal growth and transformation.
Throughout their conversations, Campbell and Moyers delve into the profound insights offered by mythology, discussing how myths provide guidance for navigating life’s challenges, understanding the human psyche, and connecting with deeper dimensions of existence. They explore the role of myth in shaping cultural identity, fostering a sense of belonging, and inspiring individuals to embark on their own heroic quests.”The Power of Myth” offers readers a thought-provoking exploration of the enduring power of mythology to illuminate the human experience and inspire awe, wonder, and self-discovery. Through engaging dialogue and insightful commentary, Campbell and Moyers invite readers to reconsider their relationship to myth and to recognize its ongoing relevance in contemporary society.
Some more books that delve into the concept of māyā and related philosophical ideas include:
“The Bhagavad Gita”: This ancient Hindu scripture is a central text in Indian philosophy and provides insights into concepts like māyā, karma, and dharma.
“The Upanishads”: These ancient philosophical texts explore the nature of reality, consciousness, and the self, offering profound insights into the concept of māyā.
“The Yoga Sutras of Patanjali”: Patanjali’s Yoga Sutras discuss the nature of the mind and provide guidance on how to transcend illusion (māyā) through practices such as meditation and self-awareness.
“The Essence of the Bhagavad Gita: Explained by Paramhansa Yogananda”: This commentary offers a deeper understanding of the Bhagavad Gita’s teachings, including insights into māyā and its role in spiritual evolution.
Veiling and projection are pervasive forces that influence our perception of reality, often operating subtly and unconsciously in our lives.
Picture this: You’re strolling through the labyrinth of life, armed with a map that resembles more of a scribbled doodle than a GPS. Suddenly, you stumble upon a signpost that reads “Welcome to the Twilight Zone of Philosophy.” You pause, scratching your head and wondering if you took a wrong turn at Gore NZ!
The Last Word: Historical perspectives:
I compiled these while evaluating my thinking in, number one, my formative years, and secondly when I became a parent.
In the 1960s, as television emerged as a dominant medium for advertising, marketers capitalised on this platform to project idealised images and desires associated with consumer products. Advertisements of that era projected images of, for example, the American Dream, tapping into the optimism and affluence of post-World War II society.
Meanwhile, in the realm of Western religious beliefs, projections often revolved around interpretations of biblical prophecy and the search for meaning in a rapidly changing world. The 1960s witnessed both apocalyptic fears and charismatic movements within Christianity, reflecting a broader cultural fascination with spirituality and alternative forms of religious expression.
By the 1990s, marketing and advertising had evolved with the rise of new media technologies, such as cable television and the internet.
Advertisers became increasingly adept at targeting niche audiences and projecting aspirational imagery to evoke desires and aspirations in consumers.
Similarly, projections within Western religious beliefs continued to evolve, influenced by cultural shifts and technological advancements. The rise of digital communication platforms and online communities facilitated new forms of religious expression and dialogue, enabling individuals to connect with like-minded believers and spiritual teachers regardless of geographical boundaries.
Contemporary examples of veiling and projection abound in our interconnected world. On social media platforms, individuals project curated images of their lives, often veiling the complexities of their inner selves behind carefully crafted personas. Meanwhile, advertisers continue to project idealised images and desires associated with their products, tapping into consumer aspirations and insecurities to drive sales. In Western religious beliefs, projections may manifest in interpretations of sacred texts through the lens of personal beliefs and biases, shaping religious discourse and practices.
On closing New Zealand politics is currently rife with examples of the first two points of illusion. I find it much to heavy though, but various players would provide ample scope for consideration of the various lens we could view their antics through.
BTW current state of health, as of March 2024, is pretty good!
The next post/chapter will be titled something like, “What I learnt from Nemo”.
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.
Rewilding in a mental health and attitudes context can relate to developing a valued-based wellness plan using Acceptance and Commitment Therapy:
As humans, we have spent thousands of years separating ourselves from nature. We’ve built cities, developed technologies, and created artificial environments that shield us from the natural world. However, as we’ve become more disconnected from nature, we’ve also become disconnected from ourselves. We’ve lost touch with our primal instincts, our natural rhythms, and our innate connection to the earth.
Time Line of This Chapter:
June 2022 approx – July 2023
About rewilding in human development terms
An unexpected and delightful connection
Insights into attraction
The needs of a toddler
Great books to read that I’ve drawn on to write this chapter.
An unexpected turn of events:
It was early on a golden autumn morning that I drove along a Wanaka road feeling the nip in the air that kept me from cycling. I arrived at my chosen cafe of the day, where Miriam, a new face topped with soft blonde hair, was engrossed in some mysterious activity at an outside picnic table. Her hands spoke of experience beyond her years, but her momentary smile conveyed the vitality of youth, artistic expression, and a thirst for adventure.
Yes, I learn a lot from hands!
The cafe owner, who knew something of my need for a quiet early morning routine during maintenance chemo, introduced us. Miriam’s acknowledgement of my presence was brief though, and I headed inside to my usual table, opening my laptop after savouring a scone with coffee and skimming through the newspaper.
My routine took an unexpected turn when weeks of COVID lockdown began. The combination of lockdown and chemo-induced fog kept me content until I ran out of fasteners/glues and materials for home improvements. Then becoming adrift I became preoccupied with what I called ‘The Butterfly Project,’ but that’s a story for another time.
A surprise came when the cafe reopened, and there was the forgotten Miriam behind the coffee machine. I couldn’t help but notice her ability to multitask effortlessly, brewing coffee while attentively listening to my response to the owner’s question as to how my health journey was progressing. I soon learned that she was not just smart but also a skilled engineer, artist, and former air hostess, and her physical beauty was undeniable.
As months passed, my routine persisted, and I found myself intrigued by her – especially her taking every opportunity to question me about many different aspects of my life. Very occasionally, like many months apart, we would walk together after her work, during which my feelings oscillated between romantic inclinations and those of a pragmatic survivor, seeking connection without delving too deep into uncertainty.
One evening, on the one and only time, as we sat together in the setting sun by the lake, I couldn’t help but admire the warmth in her eyes and wonder about the complex interplay of emotions in my own life, where I appeared happy and attractive despite the foggy misery of chemo. I had learned to postpone major decisions during such times, opting to do countenance any risk to myself. A default I learnt off an old friend many years ago when faced with tricky decisions involving others.
Skiing and adventure called her away eventually, and our interactions became sporadic. I received occasional texts when she was in town, inviting me for a walk. However, my questions about the nature of my attraction to her remained unanswered, waiting to unfold with time.
Reflections today
Now, after some time has passed, I find myself considering the possibilities and potential reasons behind her relationship with her partner (whom I never met). Perhaps they both needed each other while traveling to stay connected to their European homeland, their umbilical cords intertwined symbiotically to the past. Regardless, I no longer feel the need to find out the details. Our last walk was pleasant, and I shared with her some of the places that hold special memories for me – perhaps grounding myself in their comforting influence. I certainly learnt that her world view and my own were lacking in alignment.
The experience with Miriam brought light out of the fog with a deeper understanding of myself comparatively recently. It made me realise how our subconscious drives many of our day-to-day decisions, often without us being fully aware of it. The desires that originated from my childhood baby/toddler experiences, seeking meaningful eye contact and connection, seemed to guide my interactions without conscious intent.
While pondering the past, I’ve begun to comprehend how much progress I have made in managing my life, avoiding the worst of what might have been an ADHD predisposition from my early years. ACT therapy has taught me the importance of mindfulness, self-compassion, and accepting difficult emotions. With this knowledge, I have found solace in knowing that my journey, though challenging, is transformative.
Understanding myself better has allowed myself to embrace the present with a newfound appreciation for the complexities of human emotions. I no longer seek definitive answers or outcomes but cherish the moments of connection and self-discovery. The pursuit of self-awareness has become my compass, guiding me towards a values-based wellness plan.
As I continue to evolve, I know that more chapters of my life will unfold, each offering unique revelations and opportunities for growth. The tale of Miriam (btw name changed for obvious reasons) has been just one chapter—a beautiful interlude that reminded me of the richness of human experiences.
As the spasmodic Miriam days scaled down with a sense of gratitude and acceptance, I eagerly awaited the next page in my life’s story, knowing that I would approach it with the wisdom gained from my experiences, both conscious and subconscious.
As days turned into weeks, and weeks into months, I couldn’t help but notice a recurring pattern in my interactions with women like Miriam. The subtle yet profound impact of prolonged eye contact became increasingly apparent to me. It was as if a seemingly insignificant gesture held the power to unlock a cascade of emotions, stirring something deep within me.
One day, while sitting in contemplation, a memory from my early childhood resurfaced like a long-lost treasure. I recalled the times when, as a toddler, I would yearn for my mother’s full attention and eye contact. However, my loving mother, burdened with stress and responsibilities, couldn’t always meet this need. As a result, I had learned to adapt, perhaps too well, to fleeting glances and brief connections.
In our modern day consumer driven society that incorporates amazing technology few seem to notice that oftenbabies now days are denied access to a parent’s eyes. Instead we seem to unconsciously want them to look ahead!
Now, as an adult, that unfulfilled need has become intricately woven into the fabric of my being, giving my outlook on life a subtle ADHD flavour. It is as if my subconscious is constantly searching for those elusive moments of profound eye contact, seeking to fill a void that has persisted since my early years.
The discovery brought with it a mix of emotions—compassion for my younger self, who had adapted to an environment of limited connections, and curiosity about how this longing had influenced my adult relationships. It was as if my subconscious was guiding my choices, seeking out women who, on some level, mirrored the elusive eye contact I had sought as a child.
With newfound awareness, I began to observe how my interactions with women unfolded. I noticed how my heart leaped at the slightest prolonging of eye contact and how it left a lasting impression, even if the encounter lasted only a few moments. It was as if those fleeting connections filled a void I had carried for so long, sparking an exhilarating sense of validation and understanding. And yet with no need to take it further.
This awareness, however, did not come without its challenges. The desire for prolonged eye contact could, at times, cloud my judgment, leading me to overlook important aspects of compatibility in potential partners. It was a delicate balance between cherishing the moments of connection and acknowledging the need for a deeper, more comprehensive understanding of love and companionship.
In this journey of self-discovery, I realised that my experiences, both past and present, had shaped the lens through which I viewed the world. While this “ADHD flavour” added complexity to my outlook on life, it also gifted me with a profound appreciation for the power of human connection.
With the wisdom gained from my realisations, I embarked on a path of self-compassion and understanding sparked by cancer. Instead of judging myself for my subconscious desires, I learned to embrace them as a part of my unique story—a story of resilience, growth, and the innate human yearning for connection.
As I continue on my journey, I no longer see my desire for prolonged eye contact as a mere quirk but as a poignant reminder of missed experiences long ago. It is testament to our ability to adapt and thrive, even amidst challenging circumstances. To approach life with a heart full of gratitude and wonder, we must be ready to cherish each moment of connection, however brief, as a precious gift.
This book inspired me to try writing the like of the Miriam tale above as a short story
A Swim in a Pond in the Rain by George Saunders review – rules for good writing, and more.
NEW YORK TIMES BESTSELLER • From the Booker Prize–winning author of Lincoln in the Bardo and Tenth of December comes a literary master class on what makes great stories work and what they can tell us about ourselves—and our world today.
Scattered Minds explodes the myth of attention deficit disorder as genetically based – and offers real hope and advice for children and adults who live with the condition. Gabor Mate is a revered physician who specializes in neurology, psychiatry and psychology – and himself has ADD.
So often in life I’ve heard the advice, “don’t sweat the small stuff”. If you believe this truly then you’d best read this book!
An Astronaut’s Guide to Life on Earth is an inspirational memoir of space exploration and hard-won wisdom, from an astronaut who has spent a lifetime making the impossible a reality. Colonel Chris Hadfield has spent decades training as an astronaut and has logged nearly 4,000 hours in space. During this time he has broken into a Space Station with a Swiss army knife, disposed of a live snake while piloting a plane, and been temporarily blinded while clinging to the exterior of an orbiting spacecraft. The secret to Col. Hadfield’s success – and survival – is an unconventional philosophy he learned at NASA: prepare for the worst – and enjoy every moment of it.
BTW current state of health, as of mid July. 2023, is pretty good!
The next post/chapter will be titled something like, “Further aspects of Acceptance and Commitment”
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.
An introduction and using breathing techniques while anxiously navigating rough terrain in a 4 wheel drive
Time Line of This Chapter:
Jan 2022 – May 2022
Acceptance and Commitment therapy
Mini holiday to Mackenzie country
Anxiety while driving in 4wd
Breathing technique
Great book to read.
As I began my first session with my psychologist, she asked me why I had come to seek treatment. My answer was simple – I did not want to get ill again. However, she gently suggested that we work on creating a “values-based wellness plan”. With emphasis on moving forward to things of value that give my life meaning rather than a negative focus of avoiding getting sick. And so, I began my journey into acceptance and commitment therapy (ACT).
Acceptance and Commitment therapy (ACT) is a type of therapy that can be helpful for people who are going through chemotherapy. Some of the benefits of ACT-based psychological counseling after chemotherapy include:
Helping you accept the reality of your cancer diagnosis and treatment. (Chemo can be a tough pill to swallow, but ACT can help you accept it and move forward.)
Assisting you in letting go of unhelpful thoughts and feelings that are getting in the way of your well-being. (Chemo can bring up a lot of negative thoughts and emotions, but ACT can help you detach from them and focus on what’s important.)
Providing you with tools to manage difficult physical symptoms and side effects of chemotherapy, such as nausea and fatigue. (ACT can teach you how to be present in the moment, rather than getting caught up in worrying about side effects.)
Helping you find meaning and purpose in the midst of your cancer treatment. (ACT can help you identify what’s important to you and align your actions with those values, so you can find a sense of purpose and fulfillment, even during chemo.)
Supporting you in developing healthy habits and behaviors that will improve your physical and emotional well-being. (ACT can help you set and achieve goals that align with your values, so you can build a healthy and fulfilling life, despite the cancer diagnosis.)
All in all, ACT-based psychological counseling can be a great way to help you cope with the challenges of chemotherapy and find meaning and purpose in the midst of it all. It’s like having a personal life coach, guiding you through the tough times, helping you let go of the negative and focus on the positive aspects of your life.
Not long after starting the therapy, I decided to take a mini holiday to Mackenzie country in my 4wd camper truck.
Apart from visiting friends and family I enjoyed camping out for three nights at Lake Ohau in my small Toyota Land Cruiser. And visiting the relatively new glacial lake at Mt Cook National Park.
Camping spot on a glacial terrace above Lake Ohau hidden in the distanceTerminal lake, Tasman Glacier. Mt Cook National Park
On my way back home, I took a long four-wheel-drive route from Omarama to St. Bathans. Despite being an experienced driver, I found myself harboring anxiety on the steep and rough road. As I ascended, the anxiety began to increase, but I decided to use the breathing exercises I had learned from my psychologist. I found that the exercises worked really well and I was able to enjoy the high saddle and the long descent into another river system.
The long descent from Omarama Saddle
I eventually arrived at a very picturesque hut where I met four lovely people doing a three-month trip on heavily laden mountain bikes.
Homestead Hut, Oteake Conservation Area.
The next day, I drove to St. Bathans for a coffee and continued to another 4wd track to the historic Buster Gold Diggings in Central Otago. Once again, I used my breathing techniques and successfully navigated the rough track. However, I experienced anxiety specifically regarding meeting another 4wd on the descent. I decided to go down in the evening to avoid anxiety for the night, and to ensure a clear run. As most folk don’t go upwards in the evening.
Buster Historic Gold Diggings
This experience taught me that while anxiety can be daunting, it can be managed with the right techniques. The breathing exercises I learned from my psychologist were a game-changer and allowed me to successfully navigate rough terrain. Acceptance and commitment theory has given me the tools to build a wellness plan and live life to the fullest.
The 4-7-8 breathing technique involves breathing in for 4 seconds, holding the breath for 7 seconds, and exhaling for 8 seconds.
My favourite – words borrowed from the Internet
An outstanding book recommended by my psychologist!
“The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma” is a book by psychiatrist and trauma expert Dr. Bessel van der Kolk. The book explores the ways in which trauma can affect the body, brain, and mind, and offers insights into how individuals can heal from traumatic experiences.
Through a combination of research, case studies, and personal anecdotes, Dr. van der Kolk explains how trauma can lead to a range of physical and mental health problems, including chronic pain, anxiety, depression, and addiction. He also describes how traumatic experiences can impact the way the brain processes information, leading to issues with memory, emotional regulation, and interpersonal relationships.
In “The Body Keeps the Score,” Dr. van der Kolk offers a holistic approach to trauma treatment, drawing on a variety of techniques including neurofeedback, mindfulness, and body-based therapies. He emphasizes the importance of developing a sense of safety, re-establishing connections with others, and finding ways to move beyond the trauma and create a new sense of self.
Overall, “The Body Keeps the Score” is a thought-provoking and informative book that offers a unique perspective on the impact of trauma on the body and mind, and provides guidance on how to heal from these experiences.
BTW current state of health, as of mid Feb. 2023, is pretty good!
The next post/chapter will be titled something like, “Ongoing Acceptance and Commitment”
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.
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” 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!
Pocket lets you save the articles, videos and web pages you’d like to view later.
BTW current state of health, as of Jan 2023, is pretty good!
The next post/chapter will be titled something like, “Acceptance and Committment”
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.
My Experience with the First Six Cycles of Chemotherapy
In fact, going through the first six cycles of chemotherapy made life unexpectedly richer in some ways, such as avoiding hair loss.
One day, I was at my local garage to book a job for my car or ask questions about the website I built and maintained for them. I always feel relaxed there. As I was sitting in the reception area, I was surprised to see an old acquaintance. I thought he had passed away since I had heard that he had a terminal prognosis.
After exchanging pleasantries, we talked about our health. He shared that he was given a prognosis of just two months, and he acted quickly:
Making changes to his attitudes
Embracing the science (inherent in the health system (my words)).
And lifestyle changes.
We kept in touch via email for a few months, and I perceived that he had a good quality of life from local hearsay, for a few years. When I talked to him, he looked healthy and in good spirits.
Unfortunately, RD passed away way too soon. He was a good man, and he will be missed.
Time Line of This Chapter:
July 2019 – Jan 2020
A friend’s journey.
The Unknown
Walking Dunedin
Chemo day kindness
Hindsight
Exploring attitudes
Paradoxes
The Great Unknown.
YouTube.
The Myth of Normal
Technical talk.
Feeling Blessed.
A good read.
A new part time job.
A bright future.
Attitudes
After undergoing a few treatments that were indicating a “total response”, I had some time to reflect.
Two days before each treatment, I made a conscious effort to ring-fence off every emotion. I hadn’t necessarily dealt with them all, but my goal was to become nothingness and to welcome the unknown. Given my beliefs and life experiences, these were my only strategies. I even excluded prayer and positive thinking.
I shared a few special things with a select number of people, not to set my affairs in order but to set the stage for whatever outcomes may come my way. Although some of these things didn’t make sense to me, I followed my heart and carried them through.
Unknowingly at the time, I created space for whatever the cards may deal me, and a few months later, I realized that I found peace in this scenario.
It’s important to note that the concept of acceptance should not be mistaken for fatalism or avoidance.
The fact is, there’s no room for the Unknown in the predictable life. But being predictable it’s not how the unknown works. The unknown is unfamiliar, uncertain-but it’s also exciting because it occurs in ways you cannot expect or anticipate. So let me ask you: how much room in your routine, predictable life do you have for the Unknown?
As mentioned earlier walking was for me the best way to mitigate the effects of chemo. Especially for the several months when it was intense. And so I did during the day and sometimes the night. Dunedin is a wonderful place to wander about.
Dunedin by night.
Oncology day unit.
The six months approx. of treatments in the oncology day unit rolled by in quite a haze. In fact the only way I can be accurate writing this chapter is to refer to the photos I took over the period!
Some days previous patients would bring in goodies for morning tea. And in this case lots of goodies!
Hindsight’s
My writings to date, as far as I can remember, have covered the period from June 2019 to about February 2020. It has taken me over a year to write this much of my blog, for a very good reason: I didn’t want to write it while in the fog of traditional chemotherapy. Now, I’m over a year out from maintenance chemo (see below).
As I write this in September 2022, I can’t go back and change my attitudes or my treatment choices, nor can I change my attitudes towards other things and see what the outcome might have been. The world doesn’t work that way, and clinical trials don’t stack up when they involve only one person. The first systematic clinical trial involved the treatment of scurvy in 1747.
However, hindsight can offer a selection of theories about what may or may not have happened.
As mentioned earlier, my health professionals believe that my attitudes played a role in steering me towards remission.
In the following section, I explore how attitudes may impact health outcomes, drawing from scientific research.
Reflecting on my experience, I see similarities between my approach to cancer and the way one might contain a bushfire. By compartmentalizing my emotions, I effectively denied lymphoma access to the “fuel and oxygen” of stress-inducing hormones. However, subconscious traumas triggered by our thoughts can be more challenging to address. When past traumas resurface, stress hormones flood the body, suppressing the immune system and leaving us vulnerable to illness.
While it can be challenging to uncover what’s going on in our subconscious, we can retrain our thinking and communicate with our bodies to promote healing. For instance, I recently witnessed how a cross-country skier taught her body to relax and let go of tension through practice, creating a feedback loop that freed her mind to enjoy the experience. Similarly, we can reprogram our thinking and establish a new feedback loop that instructs the body to take charge and promote healing.
If you can grow in love, you will grow in awareness. If you grow in awareness, you will grow in love.
Osho
On the other hand, when I began treatment, I was in a state of utter despair. At the time, my ego was deprived of fuel and had to take a back seat. This left room for deeper truths to emerge, and perhaps contributed to my eventual remission. However, it’s difficult to determine what impact this had on my recovery, and there’s no way to turn back the clock and test different attitudes and treatment options. Nonetheless, reflecting on my experience, I believe that a positive attitude and a willingness to communicate with my body played a role in my recovery.
Paradoxes are present in the context of illness and treatment.
For example, while chemo cycles are known to suppress the immune system, it is unclear if this effect is uniform. I wonder if it also suppresses/fogs up the unconscious/subconscious even, which would also aid healing. Moreover, finding balance and coherence among the body’s energy centers is critical for overall wellness, and a constant focus on the outer world can lead to an unhealthy fragmentation of our energy quotient. Meditation is one pathway to achieve coherence, but it is also essential to consider the factors that affect the manufacturing of new cells, the disposal of old ones, and the impact of technology and lifestyle choices. The role of the subconscious in illness and recovery is worth exploring, as is the timing and dosage of treatments. Fine decisions made by experienced and professional specialists can make a significant difference in achieving balance and avoiding tipping points.
So now let me ask you this: could it ever be possible for your body to start following your mind to the Unknown? If so, you can see that you would have to change where you put your attention, and that would lead to changing your energy, which would require you to change how you think and how you feel long enough for something new to happen. While this may sound incredible, this is indeed possible. It makes sense that just as your body has been following your mind to every known experience in your life (like the coffee maker each morning), if you were to start investing your attention and energy into the unknown, your body would then be able to follow your mind into the unknown-a new experience in your future.
Dr. Gabor Maté On How Trauma Fuels Disease | Rich Roll Podcast
I don’t often go to YouTube, but there are exceptions. This is just over 90 minutes of pure gold On How Trauma Fuels Disease.
Technical over view:
I underwent chemotherapy treatment for a total of 30 cycles (28 days = 1 cycle), with the last 24 cycles being less intense “maintenance chemos”. To receive my treatment, I had to travel the four hours to Dunedin for nearly all of them. Especially the first six cycles.
When I arrived at the day unit, I would get my bloods done. The next day, I would meet with my oncologist, who would check to make sure I was “good to go” for the following two days of intravenous (IV) treatment. The first day was rituximab, and the second day was bendamustine. I can’t remember which day I would also receive an IV antibiotic called pentamidine. I had to arrive at the clinic by 10 am, with my lunch and anything else I wanted to keep me occupied, such as my iPad, laptop, books, or music headphones. I would typically spend several hours there, leaving around 3-5 pm.
During my visits, there were many things to be checked off, such as how I was feeling, what medications I had taken that morning (including Panadol before arriving), and vital sign checks such as blood pressure and oxygen uptake. I also had to take other medications before the IV treatment began.
After my first six months of cycles, I moved into 24 months of maintenance chemo. During this time, I received rituximab and pentamidine all in one day, every two months. Pentamidine was particularly hard on my veins and required a slow and prolonged delivery. To avoid skin irritation called tracking, I had a small electric blanket wrapped around the area where the cannulation was inserted.
I had no idea I would be so blessed during treatment, to be able to do so much…
I was able to cross country ski. Not my usual mileages though.With spring skiing featured less. Blossom festivals and the like could be enjoyed.
My old mates cross country skiing. Me in the red cap.
Three of the above mates graciously accompanied me up Isthmus Peak. I was very slow, but they looked after me. It was my first big outing. A voyage of discovery of the new me.
Since all was going so well I did a 3 day tramp. The Hump Ridge in Southland. I suffered extremely bad blistering on the soles of my feet though. I think the treatments made my skin a lot less oily. So there was less water resistance.Aigantighe Gallery in Timaru.
Flying back from a 2nd PET/CT scan in Christchurch I had a great view of Mt Tutoko in Fiordland.
Following my second PET/CT scan in Christchurch, I had a meeting with my oncologist. To my surprise, she informed me that there was no evidence of the disease anywhere in my body. This news threw me off guard, as I had expected her to say something like “we’ve knocked it back.” Looking back, I realized that I had been identifying too closely with the illness, despite my best efforts to avoid doing so. Nonetheless, I was overjoyed to hear this great news!
I found this to be a very interesting and useful read.
No matter what you eat, how much you exercise, how skinny or young or wise you are, none of it matters if you’re not breathing properly.
There is nothing more essential to our health and wellbeing than breathing: take air in, let it out, repeat 25,000 times a day. Yet, as a species, humans have lost the ability to breathe correctly, with grave consequences. In Breath, journalist James Nestor travels the world to discover the hidden science behind ancient breathing practices like Pranayama, Sudarshan Kriya and Tummo, to figure out what went wrong and how to fix it.
I found myself appointed by the Minister of Conservation, to serve on the Otago Conservation Board. A part time job, where members advise the Dept. of Conservation on governance matters. Giving a voice to the birds and/or the public.
Tuatara at Orokonui.Galaxids in the Manuherikia. A non migratory fish from the era of the dinosaurs. Approx 10 cm long. Endangered species.
A rather complex legal document.
Post glacial landscape, New Zealand Like many areas in the world glaciers have sculptured and carved the landscapes we see today. They all scrape away the softer rock and sediment beneath them. As the ice melts during a “retreat”, it will drop rocks, sediment, and debris once carried on the surface of the ice. Unlike a river, glaciers only drop their cargo when they melt. In this case further “weathering” has also occurred. Forces such as rain water run off and frost heave of soils/clays come into play. Due to altitude induced coldness, not much grows. But there is evidence of these areas in New Zealand once being home to totara forests. The ground cover in this photo is a resident tall grass known as snow grass. Also known as red tussock. The area Glenaray Station. The task: advise/submit on the Tenure Review process.
Today, the future looks bright and full of promise.
As I reflect on my journey and why I felt compelled to share my story, I realize that it has been a cathartic experience for me. It has also sparked a desire for research and self-reflection, and made me recognize that I have spent too much time focusing on superficial, short-term goals that are not aligned with my true values. This realization has encouraged me to redirect my energy towards more meaningful pursuits, rather than being driven by outdated beliefs from my childhood.
My hope is that by sharing my experiences, others may find additional tools, inspiration, and ideas that can help them on their own journeys. I believe that the lessons I have learned and the perspective I have gained can be valuable to anyone facing challenging times, and I am grateful for the opportunity to share my story in the hope that it can make a positive difference in someone’s life.
Pocket lets you save the articles, videos and web pages you’d like to view later.
BTW current state of health, as of Sept 2022, is pretty good!
The next post/chapter will be titled something like, “The Long Haul of Maintenance Chemo”
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.
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.
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 new journey.
A flying visit to have a combined PET and CT scan. I never asked why. It seemed obvious that prior to treatment, it’d be wise to have a few baselines. This was one of a few, e.g. heart etc.
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.
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.
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.
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.
Waiting and watching, while contemplating Faith, Hope and Charity
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.
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…
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.Waipapa Point Lighthouse in Southland. Just south of the Catlins
A thought provoking mural in Gore Southland
Anxiety: A Constant Companion in Waiting and Watching
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:
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.
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 DunedinBuster Diggings in spring time. Historic gold mining area, 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.Downtown Wellington.
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.
The Dunedin Chinese Gardens were a real highlight.Dunedin Chinese Gardens, by the entry way.
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!
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.
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.
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.
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.
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?
Something to look forward to each eveningAnd sometimes I’d get lucky and find the best of bathrooms!
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.
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!
“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.
We’d drive to Southland for the day. To mark and stake out a rural road. For an upgrade.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.
On other days we would work on the huge Hanleys subdivision. Situated south of Queenstown. Remarkables in the background.
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.
We rush, rush and wait. And then if gifted “wait and watch”, we could choose scarcity and bankruptcy of the soul, as the years thunder by. Devoid of hope. But if we “see” a road to abundance of spirit, which would you take?
Rush, Rush, and Wait
As I looked back on my journey, I realized that it had been as much about mental health and well-being as it had been about the physical aspects of cancer.
In August 2021, I celebrated four years on this journey, and it gave me time to reflect on the pivotal stages of my journey.
Time Line of This Chapter:
This is where the chronological style of this tale now deviates briefly into about four years of reflection. And what manifested!
The role of my local Snow Farm
Celebrating four winters of cross country skiing, (while dealing with the Unknown for the first three).
Skiing in balance
Reviewing the above mentioned winters 2017 through to 2021 – each an anniversary of sorts.
Finding assurance while being photographed in Arrowtown.
And then back to the present time of this posting…
Meeting my oncologist, and nurse for the journey
Introduction to the art of diagnosis and my first “clinic”
Art in hospitals.
Urgency… what urgency! A change of pace, and it’s challenges
Rushing then Waiting and Watching.
Back to the drawing board and the gift of time.
The journey into the metaphysical begins…
The role of creativity – recommended read. And a dive into art…
Attitudes to explore
Countering The Denial of Death tendencies.
On going decisions relating to 2017.
Some church humor.
Take-home points.
My favourite winter place and activity is the Snow Farm cross country skiing area, which is located in the nearby Cardrona Valley. It has been at the center of each pivotal stage of my cancer journey, and I have had a 20-year love affair with the place. The mountains, the great snow, learning new skills, and especially the nurturing component of the mountains are all things that I love. Hanging out with the same people every winter is also very special.
Here are my reflections on the theme of each winter since 2017:
2017: It was in the car park four years ago that I phoned my local doctor for my first appointment, with a lump in my groin being the motivation. That same winter, it was the place where I came to terms with mortality as I worked at regaining my mountain mojo post-surgery.
2018: I toured about less with less energy than normal. Enjoying my usual catch up with friends of various nationalities was on track though. That winter became the time to see what I could handle during waiting and watching. The disease seemed to be taking hold though!
2019: It was “game on.” Orchestrated to perfection! What better time than early winter to begin treatment. The whole of the ski area became my place of refuge and escapism. I experimented with what was possible during treatment, skiing about four days out of every seven. Weather permitting, of course, and between monthly visits to Dunedin.
As I reflect on my journey, I realized that the cancer journey has been a mix of rush, rush, and wait.
Please don’t get the idea I was pushing myself a lot during treatment. I’d decided on the exact opposite. I’ve seen other people’s attempts to do what they’ve always done, and noted they end up looking like death warmed up. Being blown over by the merest breeze came to mind. No, I listened to my body. I recommend never going far without a break. Eating well, honoring hydration, and keeping warm must be priorities. Be grateful, honoring the body, and especially morale!
Improving Balance on Skis – A Lesson from a Friend
Mary, one of my good friends, noted that I spent a lot of time looking at my ski tips while skiing (or rather shuffling under the influence of treatments). This has never been good for balance. Try walking and balancing on a single railway line while looking at your feet! I was very grateful for her observations. From then on, I endeavored to look into the middle distance, at where I wanted to go.
Moonlight on the Snow Farm, New Zealand
2020: Was all about seeing what I could do. Treatments continued but in a milder form. The timing of trips to Dunedin Hospital and snow/weather conditions were in conflict, and I missed the best of the skiing, except for a full-moon solo ski.
Close friends!
2021: This past winter was a time of celebration. I went for it early! “Good thinking,” I thought, as New Zealand’s second COVID lockdown occurred exactly when the snow conditions were perfect. Groan! Wanaka skiers (and businesses) went into mourning!
A few weeks later, I had the chance to catch up with Mary again and we discussed my skiing technique. I admitted that during my treatments, I tended to focus on my ski tips and didn’t look too far ahead. I explained that during that time, I didn’t want to think too much about the future and preferred to live in the present moment.
Now it’s time to continue the story chronologically…
I often go on photography trips with a close doctor friend in Invercargill. For a while, he had been interested in taking my portrait.
A few days before my first clinic appointment with the specialist oncologist in Dunedin in 2017, he called me and suggested we meet in Arrowtown’s historic Chinese gold mining area, an hour’s drive away.
I laughed at his suggestion and accused him of hurrying up the photoshoot before my hair fell out due to potential pending chemo treatment.
◀ The restored Arrowtown Police Hut, built in 1863. It is a couple of minutes walk from the Chinese settlement buildings
We met on the appointed day and had a good session. Afterward, over coffee nearby, he looked me in the eye and, after a well-timed delay, said, “You’re going to be okay.” This coming from a very experienced physician meant the world to me. It was then that I realized I was on the road to learning about the multifaceted art and science of diagnosing.
Two days after my initial diagnosis, I was on my way to Dunedin to find out more about my upcoming treatment options. I was feeling a mix of emotions – nervous, scared, and uncertain about what lay ahead.
I was scheduled to have my first clinic with my oncologist, whom I now affectionately refer to as “Lovely L….” since she has been so supportive throughout my journey. At the time, I thought of these clinics as meetings until I learned more about what was involved.
I knew that this first appointment would be the start of a long process of consultations, tests, and discussions about my treatment options. It was clear that things were about to get real, and I was both anxious and hopeful about what the future held.
How I Felt During My First Real Clinic
As I made my way to my first real clinic on my medical journey, I realized that everything I had gone through up to that point was simply a prelude to what was to come – the crossing of the first threshold.
Upon entering the waiting room, I couldn’t help but notice the dozen or so distressed-looking couples coming and going in the space of twenty minutes. Perhaps it was just my timing, but it seemed that I was the only one present who was feeling well and fit – relative to the occasion, that is. As I sat there, I found myself having a “poor me/why me, when I’ve lived well” moment, but I quickly banished those thoughts from my mind. It was hard to ignore the evidence of obesity in the room, however.
Despite my initial anxiety, the admin team for the healthcare specialists were incredibly welcoming, making me feel like royalty as they rolled out the red carpet for me. They were fully present, and their warmth helped to alleviate my concerns.
As my oncologist appeared, walking down the corridor with a welcoming smile on her face, I knew that I was in the best of hands. We began with a refinement of my diagnosis, starting with a discussion of my gait and overall demeanor and fitness. While my medical history was only hearsay up to this point, I was confident that my oncologist would be thorough and professional.
The questioning was rigorous and detailed, but I felt fully acknowledged and listened to. My cell phone accessible nurse was also present, which gave me a sense of reassurance. It was easy to miss important details in the heat of the moment, but having multiple professionals present helped me to feel more confident and secure.
All things considered, my first real clinic was a positive experience, and I felt well-cared for by the healthcare professionals who were supporting me. I was confident that they would present me with the very best treatment options available, and that gave me a sense of hope and reassurance. Overall, it was a step forward on my medical journey, and I was grateful for the support I received.
The Dunedin Hospital is fortunate to have a stunning collection of art, including these beautiful stained glass pieces located in the eye department. While I don’t know the name of the artist, the impact of their work is undeniable. And very relevant to the patient experience.
For those who are waiting, undergoing treatment, recovering, or facing the end of life, art can be a powerful tool for healing.
The subtle, subliminal effects of visual art in the healthcare environment can have a profound impact on our emotions and state of mind, helping us to find moments of calm and reflection in the midst of difficult times.
Healing is not always a linear process, but the presence of art in hospital waiting rooms and treatment areas can offer a sense of solace and support to patients and their loved ones. I am grateful for the thoughtful and intentional way that art is incorporated into the healthcare environment, and the positive impact that it has on patients and their families.
I love their philosophy of treating the patient’s personas; spiritual, emotional and physical! And of course, lets not forget the other visitors, such as family and loved ones. People waiting for news and giving love and support. A positive environment full of emotional support is of benefit to all!
via a Google hunt for researcher Roger Ulrich >>>
The British Medical Journal says, “Art is able to provide solace, exhilaration, and satisfaction in a huge variety of different forms. Above all it is able to humanize a building, infusing an often soulless and impersonal environment with affirmation…many critical moments in our lives occur there—from birth through to death—and they ought to take place in surroundings which honor their true significance.”
The effect of the art resonated with my beginnings of a plan. A several points path to wellness (see below)!
The Nitty Gritty of My First Clinic:
🔬 As I mentioned earlier, I felt like I was under a new microscope during my first clinic. I was prepared with my story, having texted my nurse about my engagement in seasonal activities like cross-country skiing. I enjoyed sharing my fun time follies with her.
But then it was time to listen to my specialist. She shared that an immediate start to treatment would involve putting poisonous chemicals in my body, and recommended we wait and watch for now. I was relieved and grateful for her advice, given the pressure that drug companies can exert in situations like these. Research into lifestyle and alternative treatments can be slow, as there is little financial incentive for drug companies.
This was a turning point for me. I began to see my disease as something I might live with, rather than die from. It was at this clinic that my specialist first spoke to me about “the power of the mind” in a tone that captured my attention. It was an open statement, delivered with a sense of certainty that piqued my curiosity and made me eager to learn more.
Overall, the clinic was a positive experience. I felt heard and understood, and left with a sense of hope and possibility for the future. I knew that there would be challenges ahead, but I was ready to face them with a new perspective and a renewed sense of purpose. 💗
The idea of going from a sense of urgency, whether for treatment or to tidy up one’s affairs, is common in various fields. It’s a familiar pattern of rush, rush, rush, and then wait. This concept also applies to situations like using aircraft in mountains for dropping off, picking up, or re-supplying. In these scenarios, the urgency to complete the mission is high, but the wait times can be long and unpredictable. It can be a test of patience, mental fortitude, and the ability to adapt to unexpected circumstances.
A one to two hour wait is on-the-cards in NZSimply because the weather has to cooperate at the take off point, the destination, and back at the take off point. Over perhaps ten to fourteen hours.
In Antarctica schedule three to ten days!
So, back to the drawing board!
I was surprised that I had the luxury of “waiting and watching.” This brought a new level of perception, and my initial plans were derailed.
Within days, I felt overwhelmed with loving advice from friends, such as “Donald, you must see so-and-so,” or “do such-and-such.” However, following every lead would be beyond my energy and time capabilities.
The gift of time on a cancer journey is precious, and this was my second dose of it, the first being the tumor removal surgery. After taking a deep breath, I decided to take broadly speaking, three courses of action:
Embrace the health system and the science.
Tend towards decision-making from the heart, alongside taking the advice of professionals. Never entertain fear.
Construct a plan consisting of about 10 points, with a goal of ten percent quality for each.
Creativity was the obvious first candidate to ramp up the power of the mind. I began thinking, “it’s currently at about six percent of capacity, so let’s get it up to ten!
We all of course have more than one creative avenue. But having a head-start I went with photography. (Noting here that this blog also fits!)
Which of course ties in with doing more in the great outdoors! Another point to aim for a full ten percent in.
◀ My above mentioned doctor friend using my camper Turtle, for his tripod base. Near Poolburn Dam/Reservoir in Central Otago
Discovering the Power of Art through Joseph Campbell’s Wisdom
“Art is the set of wings to carry you out of your own entanglement” Joseph Campbell (acclaimed mythologist and author).
Meaning that an illness can mean we become entangled with it. Identify with it. Where it becomes our all dominating story.
Recommended Reading…
Very useful and fascinating information for the beginning of my wellness journey! And written only for eBook (as far as I know), in his 80th or so year. Shortly after he passed.
I first came across him as a teenager when he was the subject of a TV doco series. Then more recently, his teachings, on a writing course.
His chapter on art is fascinating. And concepts of mythology can help us predict our future even.
◀Available at Apple’s iBook and perhaps for Kindle (no I’m not on a commission!)
The Hero With a Thousand Faces, and The Hero’s Journey, are two of his most well known works.
“Living in the Sacred” is one of my favourite and most intriguing chapters in the book mentioned above. Joseph Campbell makes some fascinating points about the relationship between art and illusion. One aspect that particularly resonates with me is the first feeling I have when I’m exposed to great art. Campbell describes it well, and you may have experienced it yourself when seeing one of my photos in this blog or spending time in some of the world’s great art galleries. It’s a split-second experience of “arrest” before your mind begins to interpret what you’ve seen, heard, or felt. It’s a moment where language fails us, and the awareness moment can be learned by unlearning ingrained beliefs.
However, there is a flip side to the “arrest”. Although I’m not prone to anxiety, I do experience the negative side of an arrest for the same split second. It could be triggered by a phone call or email subject, a grumpy client, an unexpected expense, or a loved one directing fear towards us. Or in the even worst case of a trauma stored subconsciously. In these moments, I experience scarcity for anything from one second to a minute, and sometimes even longer. These brief experiences release chemicals that compromise our immune system, which can be harmful.
Nullifying these quick gut reactions is ongoing work for me. The value of doing so is significant. The awareness moment of great art is something that I always want to experience, not the subsequent tagging. Although I have tried to learn the technique of creating tension in composition through photography, it’s the split-second moment that I find most valuable.
RIP! With a sad Sayonara
If we dwell on the above!
I want to be clear here though.
Positivity is no guarantee of survival!
But it is known to make us happier.
◀ It’s easy to feel stagnant, despair, and become overwhelmed when we focus on the photo to the left as an outcome of a diagnosis. It can feel like an almost immediate demise.
We might even contemplate giving up and not bothering to try, despite all the advancements and improvements in our world. We may have been born into a tough situation, put ourselves there, or had it thrust upon us, in a world where a scarcity-based mindset can prevail, if we allow it.
But the good news is that we can transform our lives when we decide to focus on gratitude and make small changes to develop a sincere trust in life and the future.
We are part of an unfolding story, and we can be the author who determines the point – the end game. It can be one of contentment fused with happiness, or a hero’s journey of adventure, even leading to death.
It’s not about being positive but rather a change in thinking, where we take wisdom from the past and bless our future so that it never becomes an angst in our past.
An uptick of self awareness – an engagement of the executive brain that brings balance to the lower reptilian primal urges will serve us well!
This is very important to keep in mind – it is too easy to have an apocalyptic vision of the future. This type of unhealthy fear (unhappy even), be it even of a split second’s worth of residency has consequences! Adrenaline is ever-ready to rev us up. Which in turn mobilises an immune response – when there is no need!
An adrenaline deployment is better suited to the surprise company of a grumpy dog with rabies.
The Unknown will probably start out in the guise of fear. Then progress to an uneasy acceptance. It will be your friend once it is welcomed. Then it becomes a place to store processed thoughts, and dreams – letting them go. Once there in the company of infinite probabilities, sooner or later one of them will ultimately slow down in frequency as energy…and come back into three dimensions as matter.
Anyway back to decisions I thought I had to make back in 2017:
How much time daily to devote to examining options, and which to discard. In a daily time-table that now had to feature distinct periods of relaxation.
What should my ten point plan feature?
How to mentally handle waiting and watching!
Lastly perspective born of history can not only teach us valuable lessons. Humor is inherent in everything…
The Serpentine Church, Central Otago, New Zealand
Cost £100. Contributed by the diggers.
The first service is described as follows: “The minister being late the congregation of miners, after waiting for some time, went down to the hotel for refreshments and drank deeply to keep out the keen July air, keener than ever at this altitude.
The service opened with a well-known psalm and an encore was demanded by the congregation. The preacher after expressing very strong disapproval, went on with the service which was however abbreviated”
Not many services were held because of the small number of inhabitants, and the difficulty of access.
It stands at an altitude of 3100 feet – when built the highest church in New Zealand.
Summation – My “Take Home” Points:
Seek the company of positive and reassuring friends over those who are not so inclined. Focusing solely on our own positivity may be less productive.
Trust professionals – this frees up energy.
Consider the hospital environment and how to engage its potential for wellness.
Learn to leverage the power of the mind.
Dare to dream – rushing will slow down, and we can develop a set of wings to enter the path to wellness.
Monitor self-thoughts – be an eagle on the shoulder, watching and whispering wisdom in our ear, or a butterfly or a ruru/morepork. Work our imaginations!
The next post/chapter will be titled something like, “The Long Night of the Soul”
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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.
All photos on this site are my own. With the very odd exception, and attribution is acknowledged on them where possible. To see/ purchase photos from my wanderings, they’re at PicFair >>
