Introduction

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

Evaluation of the techniques and mindsets discussed are best done with great care and a sense of fun and wonderment.

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

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

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

This blog mimics a book. Scroll down, or jump in somewhere…


Chapter 1 – the lead up to Diagnosis

Matukituki Valley, Mt Aspiring National Park. The authors home for a few years.
Rock Pool Lake Wanaka

In the Beginning:

In the first few weeks it was a broad diagnosis for me in 2017. The exact flavour of the disease took a bit of discovering – it was a rare form called mantle-cell lymphoma.

So… between a rock and a hard place sort-of-thing!

Mt Bevan, West Matukituki Valley, Mt Aspiring National Park, New Zealand

My story started with a wobbly knee. I was working for the third time for New Zealand’s Department of Conservation for a six month period. This time spanning the summer 2016-17. The location was in the West Branch of the Matukituki Valley in Mount Aspiring National Park. The jewel of the crown as far as National Parks go, and the stuff of dreams. If mountains are where it is at for you.

Towards the end of my last annual contract I developed a wobbly knee. In New Zealand’s rather rugged Southern Alp this tended to be a little alarming!
So for my last walk out for the season I advised my workmates by radio that a modest rescue by 4wd could be on the cards. But I never did fall over and the mystery of what was causing it was not to reveal itself for a few more months.

The "Meat" tree by Aspiring Hut, West Matukituki Valley, Mt Aspiring National Park, New Zealand

Plodding alone down valley in the autumn mist on my way back home, I reflected on the season. There had been huge increase in visitor numbers over the last two years. It’d become much to demanding and tiring.

So called “front country” tramping had taken off. (the new terminology referring to the easy walks in our back country). And the question arose in my mind, “do I ever want to do this, now exhausting job, again?”

Looking down West Matukituki Valley, Mt Aspiring National Park, New Zealand. From the Liverpool Hut track

Every day I would interact with lovely people for sure. But front country types tend to be high maintenance (7am until 10pm) – they’re in an environment new to them. They have lots of questions relating to the ticking off of to-do lists (Internet inspired). These were usually about weather timing, and times to get to other huts.

Discovering a lump in my groin by winter, was a bit of a shock! So off I went to my doctor. The first thing I bought up was my wobbly knee, the second the lump. After that the knee got forgotten!

My doctor and I are old friends, so knowing me well he told me the serious truth of the matter, right up front. A blessing – that was what I needed! But of course detail was missing.

New Zealand falcon/kārearea by a DOC sign, Matukituki Valley, Mt Aspiring National Park, NZ

I mentioned that after I’d finished my seasonal job with the Dept. of Conservation, that I’d taken several weeks to recover. His reply was, “it’s good that you did!” Or similar. Looking back a few months later,I realised this was an indicator. The disease was not as aggressive as first thought.

“Playing in the Sand” by Berthe Morisot

How did I feel:

Vulnerable and scared! Solution: Make a determined effort to put these aside and deal with whatever with clarity. With no wasted energy! This to me meant becoming selective about which emotions to entertain. And all the while letting ingrained mountain survival skills come to the fore.

Shocked and even a little indignant – cancer happens to others! Not me… I’ve been living well forever, e.g. lots of hard exercise at times, no smoking, little alcohol and pretty good food. But, opps, how about the sugar habit, and hmm… my emotional health?

Anger for a wee while – like 2-3 sessions of 5 minutes each. Until realising that this takes energy and had a flavour of heaviness. In short useless, for my personality type.

And then out of the blue while driving in town; tears! I wanted/want to be there for my son. 26 at the time – I was the significant, full time, home dad for his first 9 years. We’ve had some endearing and bonding times together. And still do.

And holding all the above in it’s grasp for awhile was a “victim” persona: “oh, poor me!” etc. (this in its subtle form, was to merit much deeper examination later)

Feelings of desperation! This manifested into entertaining lots of yoga (which I never did, as it turned out). And then I thought some drastic dietary changes would help. I’m not sure where that short lived idea came from as I was already eating well. Apart from too much sugar, so I really jumped on that one!

One thing did endure though: juice of fresh squeezed lemon juice and water – first thing each morning. I think this came from the Cancer Society. Did it make a difference? Well, if it did, it was far from noticeable, but it felt righteous!

The old Cadbury Chocolate factory currently being demolished to make way for the new Dunedin hospital

For the moment though it was full steam ahead in the public health system in Dunedin Hospital. Removal of the tumour entailed a surgical procedure, in quick order.

On the left: The old Cadbury Chocolate factory currently being demolished to make way for the new Dunedin hospital.

On a Friday the surgeon rang. I was driving so pulled over. He said, “it’s urgent to remove it as soon as possible, I have a space on Monday, can you be here please? Oh and, you’ll have noted my last name is very much like a popular character in a children’s book series. But I’m not related, and I’m much nicer looking”.

It turned out that one of my best friends, an anesthetist, had worked with my surgeon, and said he was very good.

And so he was: reassuring words, gown on etc. And I was soon marched into a theater full of about eight people. They pounced – I was out like a light, before I’d even looked about me.

I woke up to a welcome tea and sandwiches sometime later. No after affects like queasiness. The technology has come a long way!

Technical Stuff (Keeping in mind I’m not a doctor! And that at the time I was not only feeling poorly, but the recipient of bad news. Both inhibited my ability to keep track of detail. And frankly it would have served no purpose if I had. Or could understand the detail.)

A fine needle biopsy was undertaken before the surgery (sample too small). And a bone marrow biopsy was also done (evidence of the disease was revealed). Along with bloods (OK). And also a CT scan (helps define locations, and very likely reveals other critical information). And of course a manual hands-on examination of my immune system circulatory areas, and associated places: neck, chest, armpits, groin and stomach etc. – looking for lumps (lots of various sizes were found).

Each test was signed off by the appropriate specialist. I saw the resulting email of collated information – it was very long and reassuringly technical!

🔎 Identification of the flavour of the disease happened within days of the surgery. Outlining treatment plan options came next. Later too I noticed my knee was better – the tumor must’ve been pressing on a nerve!

A summation and decisions I thought I had to make at the time:

  • Who to tell, if anyone, and when?
  • Should I fight the disease like a battle or not?
  • What, do I need to change to survive and become healthy?
  • How best to prepare for whatever, while being in the “present”?
  • Who would be willing, and more pointedly able to support me?
  • What should I do first!

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The next post/chapter will be titled something like, “Skiing with humor with those who are now dead”

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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 >>



Chapter 2 – An Exact Diagnosis then Skiing Mindful of the Dead

Sunset from the Snow Farm cross country ski area, Cardrona, New Zealand

The Morning After Surgery:

The anesthetic did not knock me around, and this still surprises me. A bonus to be grateful for! Technology marches on!

The next morning I decided I was well enough to travel home, and buy a new camera! The rationale was simple: I needed a reward! And of course I was thinking, “well if I die soon, I may as well enjoy myself by being creative”. A positive option was, “okay I’ll do this with the idea in mind that I’m going to get well”. Either way I saw it as a win/win situation.

Winter on Hawkdun Mountains, Maniototo, Central Otago, New Zealand

My first image with the new camera! Symbolic of Hope. Which of course changes as we age. It can help ward off or reduce anxiety, trauma, and depression. Having hope for the future helps build our resilience, and our ability to get through tough times.

◀The Hawkdun Mountains that form the northern border of the rather vast Maniototo – leading into Central Otago.

Time Line of This Chapter:

  • A reward
  • The surgeon’s instructions
  • Finally I ski some trails, aware of two universes. Ghosts even.
  • Multitudes of diverse feelings
  • Annoying aches
  • To many decisions needing speedy resolution (or so I thought)
The mountains of Wanaka New Zealand

It is a truism that surgery in the likes of cancer will buy time. I was to learn later though, that I’d have a bit more of it than I thought.

The surgeon’s instructions were very specific: I was not to move around during recovery. Even around the house for one month-no short walks and no activity, period!

Any exercise could cause lymphatic liquid to pool/leak into surrounding tissue. There is a medical name for this, but the point being if this were to happen the patient would need a bag. As in like a colostomy bag, to drain it.

All I could do for the month was look at the snow on the nearby mountains (as above). And at least look forward to being in them – soon, if I was a patient patient! And well looked after by Robyn, who kept me honest whenever I got restless for exercise.

The Snow Farm cross country skiing area, Cardrona Valley, New Zealand

Snow wise, New Zealand winters are quite short. As the initial doctor’s visit, fine-needle biopsies, and surgery in Dunedin took a few weeks. I felt time was running out to recommence cross country skiing for the season.

The only area in the country, with easy access, is only 40 minutes drive away. So as soon as my month of forced inactivity was over, with nothing bad happening, I was off “up the hill”.

Paradise Ducks. The Snow Farm cross country skiing area, Cardrona Valley, New Zealand

I only had one decision to make: to ski or not to ski. Walking around on foot could mean I would put my foot in a hole hidden by the snow, and do damage to my small wound. This would not be likely with skis on but I could still fall. I opted for walking only. To make sure I even left my skis and boots back home.

It’s a very peaceful place – the local ducks are never frightened away!

Sun dog at the Snow Farm cross country skiing area, Cardrona Valley, New Zealand

The parking area at the Snow Farm, in the Cardrona Valley, is on the other side of this building,. When I was hobbling from my truck one of my friends saw me from up on a deck by the café, and said something like: “get a move on”.

When we meet a few minutes later I told him I’d recently had surgery. He immediately replied by asking, “prostate cancer?”. Well, no I said, and gave a brief explanation.

Patterns on the snow at The Snow Farm cross country skiing area, Cardrona Valley, New Zealand

His story was that he had been through the mill about 18 months previous with his cancer. Seeing him looking so fit and healthy was very encouraging. Right at the time I needed it!

I then remembered that there were others who’d skied here, and had cancer. But never “made it”. The dark side of my humour then rose to the surface, and I realised I was not going to meet the dead ones!

Cross country ski race, The Merino Muster. At The Snow Farm cross country skiing area, Cardrona Valley, New Zealand.

By the end of the season I was blessed to find I was skiing about OK, all over the place. I did not enter the annual Merino Muster race though. And more specifically I did not help out doing marshaling, like other years. I’d become very aware of the importance of looking after myself in regards to energy levels and warmth etc. So I just did a few hundred images.

These racers, pretty much all from overseas, are the leaders into 42 Km,. They’re of World Cup/ Winter Olympic class. As such very inspiring. They’ll usually average 20km/hr over that distance too.

Fence and wind sculpted snow at The Snow Farm cross country skiing area, Cardrona Valley, New Zealand

How did I feel:

So far, so good! A positive surgery outcome was a great boost, and a good feeling to have.

But what under-scored this was a sense that time was running out. With a distinct feeling of a need for speed! Understandable because of the wonderful and prompt action from our health system.

During the mandatory month of rest afterwards I came to realise that there was a lot to do. Many people would not want to leave this world without making plans for one’s family, for example.

The obvious being a Will. But there are many little things such as noting down passwords, and where to find all manner of things. This all felt stressful.

I also started to mull over the possible causes of the disease. My wonderful local doctor, knowing me well, anticipated this. He suggested it could be random. Never-the-less I started putting an increasing amount of thought energy into this. Now looking back I do have a valid theory worth exploring. But more on this later. In the meantime, and not voiced to my doctor was, “OK I could consider the cause to be random. But this does not mean my reaction should be!” Looking back I now realise this attitude was a turning point!

Grief! Good grief! Loosing one’s health is a loss I’d not anticipated. Straight away those feelings started to manifest. Arrival of grief can be subtle, or sometimes not. My experience was the former. But it is good to realise this and how it might play out.

Lastly I felt a need to be less cloistered by support. I wanted to be alone more. As fitting my nature; to handle many aspects solo. There is a time and a place for everything. Each individual to us all.

Night full moon ski tour at The Snow Farm cross country skiing area, Cardrona Valley, New Zealand

Towards the end of the 2017 Austral winter my fitness returned in leaps and bounds. I was even able to indulge my favourite pastime of a solo ski tour under a full moon. My body (and mind) loved not having to support a tumour!
And the new camera proved to be “winter friendly”

Technical Stuff:

After surgery I was well and truly inducted into our health system. I was beginning to realise I was being treated like royalty.

🔎 The examination of my extracted tumor in my groin took awhile. And then I was duly summoned to Dunedin to the oncology/hematology department. Where all was revealed.

Meanwhile back home I was becoming used to a constant “aching”, in my lymphatic system. Which extends from the groin area to the neck/head. Unlike our blood circulatory system, this system does not have a pump. I was starting to realise that exercise of the upper body would serve me well.

Decisions I thought I had to make at the time:

As mentioned in Chapter One. An on-going source of anxiety was who to tell!

First off was when to reveal all to my son. As it turned out he found out by accident. Serendipity made a showing when he met Robyn on the street in Dunedin. When she had dropped me off for my first fine needle biopsy.

Sooner rather than later though, I got sick of my own story!

An earlier question was: Should I fight the disease like a battle or not?

Well! I decided early on to not make it a fight. My Dr. noted that in his patients over many years he’d noted those who adopt a measure of acceptance, tend to do better. The road I chose was “non passive acceptance”. A play on words!

If someone were to ask my advice on the benefits of fighting (which has happened), I’d now answer by saying, “OK, but… it could be wise to decide how much energy you should expend”.

I get annoyed when on radio or TV news that announcer says, “So-and-so died of cancer after a long battle“. This is not a good message! It’s a habit thing; for far too long the word cancer has been synonymous with impending death. And it ain’t so – there are hundreds, if not thousands, of different types. Modern science, thinking and technology make remission very possible.

This highlights the problem of lumping a vast variety of cancers together in one prognosis where as  cancers can be very very different beasts. There are so many old beliefs about cancer that are cemented by our society deep into our psychi/brain…things like cancer kills, got to chop it out, …beliefs that are flawed because of the way medical science is now playing god”

Dr Jim Vause – GP emeritus

The word cancer should be banned from the dictionary”

Brian Miller – publisher author www.lifelogs.co.nz  Dunedin

As a disease wears us down, it can pay to consider how our thoughts affect our immune system!

Summation – my “take home” points at the time:

  • Practice self rewards and gratitude – that we can do this is fuel for gratitude!
  • Practice Hope!
  • Follow instructions from medical professionals
  • Moderate feelings of having to rush – honour resting.
  • Be reassured, others have gone before us.


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

BTW current state of health, as of April 2021, is pretty good!

The next post/chapter will be titled something like, “My first of many meetings with an oncologist”

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

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

Chapter 3 – Treatment options to the forefront

Merino sheep, Cardrona Valley, New Zealand
Ice bow and fence at the Snow Farm, Cardrona, New Zealand

Returning to one of my passions:

Post the surgery, to remove the tumor in my groin, there was a month long period of inactivity and recovery. Some of that time I knew I was adjusting to a new paradigm. Trouble was I had very few ideas what it was. More work was in order! After a month though I jumped straight into my favourite winter activity. Cross country skiing is an excellent way to strengthen physical fitness. Which of course makes it harder to hold negative thoughts. They’re simply omitted as chemicals consistent with joy and well-being flood our system.

Time Line of This Chapter:

  • Recovery from surgery – passive nothingness
  • Active recovery from surgery to engaging the season and environment – enhancing mental attitudes
  • Call to adventure – destiny summons us. To a zone unknown (well actually just messing about on snow for now)
  • A surreal opening to another. A sometimes personal, sometimes benign energy everywhere that supports our journeys.
  • Bucket list stuff.
  • Feelings – one of the mob.
  • Amulets against the dragon forces – books/mentors etc.
  • The all-powerful, all encompassing entry to recovery. First sit-down, with a registrar oncologist – Dunedin Hospital based.
  • Naming something rare, with a need for speed
  • Another amulet – a cell phone number.
  • Oncology counseling referral (Dunstan Hospital in Clyde – one hour drive away).
  • What not to do!
  • A series of tests/decisions/tasks to be grappled with
  • Road blocks that delay visits to doctors
The Snow Farm, New Zealand

At first I skied near the Lodge at the Snow Farm, Cardrona, New Zealand. After all I had a new camera to come to terms with.

Snow Farm River Run

Pretty soon I was able to go further afield. My favourite tour is the River Run, down to the headwaters of the Meg river.

On the Cromwell to Queenstown road you’ll find the Meg enters the Kawarau Gorge. This is right by the car park at the Roaring Meg power station. The Gorge is a tributary of the Clutha River.

Coaching at the Snow Farm, New Zealand

My sense of normality was being restored! I can’t recall if I’d told any of my skiing buddies what was going on. And I was learning that social contact is a proven path to a healthy life. Along with exercise!

Bob Lee Hut

Pretty soon my body, the moon and the weather transpired to lure me into a little adventure – a full moon ski tour.

I like to arrive as the sun is setting and do some photos. Then eat a sort of evening version of lunch, and prepare for my return in the darkness. The light of the moon (here rising) being my guide.

Skiddo at the Snow Farm, Cardrona, New Zealand

But quite a telling thing happened on the way to Bob Lee. One of my friends who works at the area was driving by on a skiddo, and she stopped.

She had noticed my changed energy or demeanour, and asked me what was wrong.

So there I was blurting out the whole story, or at best a shortened version. On reflection the disclosure in a surreal setting was quite a help in gaining perspective.

The Dart River in Mt Aspiring National
Park. Entering Lake Wakatipu.

All to soon the snow was “played out”. As spring decided to appear I traveled all over the place in the lower South Island.

I was entertaining a bucket list!

Martyr Saddle. Where there is a viewpoint overlooking the Cascade Valley. South Westland
A World Heritage site

How did I feel:

Like one of the mob dispossessed of health!

Which means the loss of health will trigger grief – over the loss of same

Very vulnerable, but with a growing sense of calm. With an inclination to not “buy into” anything. An empty vessel!

And that I could achieve the above by filing all incoming information as provisional. Being opinionated does not engender a sense of contentment. Which of course is an opinion!

When we’re open to serendipity this is what can happen:

While working for the Dept of Conservation/NZ Alpine Club at Aspiring Hut. In the National Park of the same name, I met a couple of lovely families. They had a great holiday in some good weather. One of them made the journey in by electric wheel chair, which he’d designed himself. On both counts a huge achievement!

We became FaceBook friends later. Since I post lots of images on that platform he noticed one, and asked if I’d supply a copy as a cover for a new book coming out. I was happy to donate it.

Then one day, right in the middle of the above discussed changes in my life, a “thank you” copy arrived. It was uplifting to say the least. It was very useful to read about how others dealt with big changes and challenges regards health. Published by the NZ Spinal Trust

The Art of Recovery is a very worth-while read >>

House Keeping Stuff with a Technical Flavour:

🔎 Summoned to Dunedin Hospital in the spring time 2017, I met with a registrar (newcomer in training).

I was hosting mantle cell lymphoma. Quite rare and non Hodgkins (I would have preferred the less severe plain Hodgkins). I was Stage 4A and to “curtain time” was 37 months. I felt for the messenger!

A first brief (due to him learning I presume) discussion consisted of two treatment options. Along with paper intense documentation. I still sensed a need for speed.

The first paper being a pretty heavy-duty Nordic Protocol. (the connection to my cross country skiing amused me). The second a milder option. The former meant I would have to spend a few nights in hospital every 28 day cycle. This freaked me out, and more on why later.

A very experienced nurse was present. At the end of our meeting she gave me her cell phone number. We agreed on text messaging, and it was OK at any time for me to seek support. “Wonderful”, I thought!

Having a caring and loving line of communication gives a strong signal. When we know others care, it equates to a better chance of healing!

Oh, and I was advised to refrain from Googling my flavour of disease. Very wise advice! Before long I was furnished with appropriate URL’s linked to well balanced and appropriate information.

What not to do:

I’m reminded at this moment to write about something very important. My wonderful local doctor mentioned it a couple of times:

We get a diagnosis, and with the best of specialist help, we construct a plan of action. e.g lifestyle or dietary changes.

And off we go, making what can be for many, mammoth adjustments! But despite this, the disease progresses.

The trick then is to avoid at all costs thinking that we’ve not honored our resolve well enough! And we beat ourselves up.

Never forget that our thoughts influence our immune system!

Decisions I decided to make:

I started meditation. Mindful that for many years athletes have used visualisation techniques to great advantage. It’s a big topic to imagine winning, or finishing! And one I’ll write more about later.

At this point though, there were too many decisions! Time seemed “of the essence”. The idea seemed to be to get ready for a rough ride. To either get well, or otherwise.

One item headed the list: how to handle many possible nights in hospital during treatment. (If I choose the more intense one on offer)!?

You see up until age about 9 years, I spent an extraordinary amount of time in hospital. For reasons still unknown.

Although I don’t have any personal photos of this time in Oamaru Hospital, I did find this on the North Otago Museum FaceBook page. It sums up how it was, and I’ll swear I once played with the toy on the left. And the faces trigger some hazy memories! Not all bad, but confusing. Dropped off literally at the door amongst strangers by parents, rigid visiting hours, scary smelly unknown stuff all about, and I was trapped!

Back then this amounted to an unsettling sense of abandonment. That it was from very loving parents was very confusing (and can cause dissociation). The experience also often involved sharing a room of four beds with older men. One was there for a quick surgery. One for a few days to establish a diagnosis, and one to die. Even as a wee kid it was obvious which was which!

The sense of this establishing a victim mentality was something I’d not bought into, a long time ago. The experience(s) have made me who I am, and for this I am grateful. And no one has had a perfect childhood anyway! Mine was pretty damn good too, compared to many.

So I decided some counseling would be a good idea. So I txt’d my new nurse and asked for some local recommendations. Her reply, “I don’t know of anyone in Wanaka, but we can do that. I’ll organise a referral – I think there is someone at Dunstan Hospital” (an hour’s drive away for me). And in due course I soon found myself getting the help and insights I needed.

Looking back this decision was the best one I made during this very rushed period. And it triggered a very deep sense of appreciation. Out of which flowed self 💗 and the very seeds of a few possible ideas.

Pushing through mentally – Good or Bad?

Careys Hut in winter.

Several weeks before my diagnosis I did a trip to Mavora Lakes, in northern Southland, with a very close friend, and we did a day long mountain bike trip.

It was a very tough trip for me – I had to dig deep coming back especially.

I put the experience down to age. I was wrong!

The track was very muddy and wet

I had the profound insight later that non physical outdoors people may put their hand up much sooner than I had, if they don’t feel 100%. And get a doctor’s appointment sooner rather than later. As opposed to myself gritting my teeth and pushing through with my mind.

My outdoor experience had worked against me. It’d cost me valuable time in this story! The practice of engaging peace and stamina with the mind did work in my favour later though.

Summation – my “take home” points at the time:

  • Follow your passion -whatever it happens to be.
  • Unloading to an empathetic other is OK – choose wisely.
  • Bucket lists are good fun (see passion above).
  • Acknowledge grief – let it work itself out. Fighting it seems very un-cunning.
  • Over Googling, read good books for ideas and inspiration – they usually have professional editors!
  • Ease into treatment options. Treating them in a provisional manner can be calming.
  • Don’t be hard on “self” if the disease progresses, in spite of hard won changes to lifestyle/beliefs.
  • Seek counseling, if going down this road resonates.
  • As we age get regular health checks. Mention oddities that once we would have ignored, or put down to aging.

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

BTW current state of health, as of June 2021, is pretty good!

The next post/chapter will be titled something like, “Let’s Wait and Watch”

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.

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 >>

Chapter 4 – Rush, rush, and Wait

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?
Meadow Hut, Snow Farm cross ski area, New Zealand

Anniversary Time:

Several weeks ago in August this year 2021, I celebrated four years on this journey. As it turned out, it’s been as much about mental health and well being, as it has been about the physical aspects of cancer.

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!

  • Celebrating four winters of cross country skiing, (while dealing with the Unknown for the first three).
  • Reviewing the above mentioned winters 2017 through to 2021 – each an anniversary of sorts.
  • Looking down is not cool
  • Finding assurance while being photographed.
  • Meeting my oncologist, and nurse for the journey
  • Art in hospitals
  • Introduction to the art of diagnosis and my first “clinic”
  • 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
  • On going decisions
  • Some church humor
Snow Farm cross ski area, New Zealand

My favourite winter place/activity, is the Snow Farm cross country skiing area. It’s in the nearby Cardrona Valley, and has been at the center almost, of each pivotal stage of my cancer journey.

The Snow Farm has been a 20 year love affair. Great snow, learning new skills, mountains, and especially there is a nurturing component. Mountains gift me this! Hanging out with the same people every winter is very special as well.

Reflections on the theme of each winter since 2017…

Snow Farm cross ski area, New Zealand

2017: It was in the car park four years ago, that I phoned my local doctor for my first appointment. A lump in my groin being the motivation!

Then that same winter the place where I came to terms with mortality. As I worked at regaining my mountain mojo post surgery.

Flags, Snow Farm cross ski area, New Zealand

2018: I toured about less with less energy than normal. Enjoying my usual catch up with friends of various nationalities was on track though. This 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. I skied about four days out of every seven. Weather permitting of course, and between monthly visits to Dunedin.

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!

Ski tracks, grooming, Snow Farm cross ski area, New Zealand

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 to!

Full moon, Snow Farm cross ski area, New Zealand
Moonlight on the Snow Farm, New Zealand

2020: was all about seeing what I could do. Treatments continued but in a milder form. Timing of trips to Dunedin Hospital, and snow/weather conditions were in conflict. I missed the best of the skiing. Except for a full-moon solo ski tour in Sept.

The Lodge, Snow Farm cross ski area, New Zealand
Close friends!

2021: This winter past. A time of celebration. I went for it early!

“Good thinking” I thought. As NZ’s second covid lockdown occurred. Exactly when the snow conditions were perfect. Groan! Wanaka skiers (and businesses) went into mourning!

Sunset on snow. Snow Farm cross ski area, New Zealand

A few weeks later when I met Mary again we had time to talk. I brought up the topic of how while skiing I was looking down at my feet. I made the comment that during the treatment time I’d realised I did not want to look very far into the future!

Now it’s time to continue the story chronologically…

At times I do a lot of photography trips with a very close doctor friend in Invercargill. For sometime he’d expressed an interest in doing my portrait.

The restored Arrowtown Police Hut, built in 1863.

He rang me a few days before I was due to visit the oncology unit in Dunedin again in 2017. My first clinic was pending with the specialist oncologist who was going to look after me. He suggested we meet for the day in Arrowtown’s historic Chinese gold mining area. An hour’s drive away.

◀ The restored Arrowtown Police Hut, built in 1863. It is a couple of minutes walk from the Chinese settlement buildings

I had a good chuckle at his suggestion, and accused him of hurrying it up, before my hair fell out. There was every possibility that chemo treatment was pending.

Well we met on the appointed day, and had a good session. Afterwards over a coffee nearby he looked me in eye, and after a well timed delay said, “you’re going to be OK”. This coming from a very experienced physician meant the world to me. And I realised I was on the road to learning about the multi faceted art and science of diagnosing.

Dunedin from Flagstaff

Two days later I was on my way to Dunedin. To find out what was in store for me, in regards to my upcoming treatment options.

It was to be the first of many clinics with my lovely oncologist (I thought of them as meetings until I knew better!). Things were about to get real!

How did I feel during my first REAL clinic:

The Crossing of the First Threshold! The realisation dawned; everything up to this point had been a fulfillment of preliminaries.

The waiting room was something else, e.g. there were about a doz. distraught looking people coming and going over 20 minutes or so. It must have been my timing on the day, but I seemed to be the only well and fit person present. Relative to the occasion! Or was it that I was having a “poor me/why me, when I’ve lived well” moment. Either way I banished that thought. But there was a lot of evidence of obesity.

The admin team were so welcoming. I felt like royalty – a red carpet rolled out feeling. They were very “present”!

My oncologist appeared smiling, from around a kink in the corridor. While walking down it 20 meters to her office I knew I was in the best of hands. Refinement of my diagnosis was in the air. Starting with my gait and general demeanor. Up until this moment it had been only in digital form hearsay for her.

A deep questioning regime followed as soon as I took a seat in her office. My cell phone accessible nurse was present too. The more the merrier for now, I thought – it’s easy to miss stuff in the heat of a (first clinic) moment.

I felt totally acknowledged and listened to. And looked after!

Waiting rooms and art

Dunedin Hospital is blessed with stunning art. These stained glass examples are in the eye department. Sadly I’ve no idea of the artist’s name.

It is a very powerful concept. Especially for those waiting, getting treatment, recovering, or dying! Subliminal too! Healing is not linear!

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 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 mentioned above I was under a new microscope!

I had my story prepared. I’d been texting my nurse that I was seasonally engaged cross country skiing. There was a hint of fitness inherent. I got to speak of my fun time follies.

When the words had landed and the snow flakes settled. Then it was time to listen to MY specialist.

“Why would I recommend an immediate start. It would involve putting poisonous chemicals in your body”, she said. “Lets wait and watch”. That was my understanding of the conversation!

Knowing of the pressure drug companies can exert, I felt relieved and delighted with her advice. Research into lifestyle/alternative treatments is slow. There is no money in it for them.

A new concept dawned. My disease might be one I die with, rather than of!

And it was at this clinic when she first said, “The Power of the Mind…”. In a voice that got my attention. It was an open statement, with a tone of fact. Something worthy of detailed examination.

I was on my way! 💗

The concept however of suddenly going from a sense of urgency (for treatment, and/or tidying up one’s affairs) happens in various fields. Rush, rush, rush, and then wait was no stranger…

Whenever aircraft are used in mountains for dropping off, picking up, or re-supply, it is very common…

Squirrel helicopter picking up trampers, Otago, New Zealand
A one to two hour wait is on-the-cards in NZ
C130 Hercules, Antarctica
Simply 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!

That I had time to “wait and watch” surprised me. This led to a whole new level of perception. And so my fledgling plans were waylaid.

I don’t know if it was a coincidence or that my whole energy changed. Within days, I felt deluged by loving advice from various friends, e.g. “Donald you must see so-and-so”. Or do “such-and-such”.

The realisation dawned! Even following a few leads would be beyond my energy and time capabilities.

The gift of time on a cancer journey is precious. This was my second dose – the first being the tumor removal surgery. Taking a long and deep breath I decided on, broadly speaking, three courses of action:

  • Embrace the health system and the science
  • Tend the decision making away from the logical intellectual mind a little bit (more). Take the advice of the professionals, while developing a parallel course towards what was ‘heart-felt”. While never entertaining fear!
  • Keeping the above in mind, construct a plan comprised of about 10 points. And aim for a full ten percent of quality for each.

Creativity was the obvious first candidate (ramp up the power of the mind!). I started thinking, “it’s at about six percent of capacity, so 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

“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 above book. He makes some fascinating points about the relationship between art and illusion.

An aspect that works for me, is the first feeling I have when I’m exposed to great art. He describes it well.

You may have experienced it on seeing one of the above photos. It would be great if you have. If you’ve been fortunate enough to spend time in some of the worlds great art galleries I’m sure it’s a certainty.

It will have been a split second long experience. A moment of “arrest” before your mind starts to interpret what you’ve seen, or heard, or felt. It’s the reason we value great art!

A moment where language fails us. In fact it’s not even present!

The useful aspect is that it bypasses ingrained beliefs. It fosters a revealing of reality, divorced from our thinking mind. The awareness moment can be learnt. In an unlearning (of ingrained beliefs).

A sense of tension in the composition may manifest also. And endure even, when we interpret what we see/hear.

Googling a phrase like: “photography + tension + composition”, has not enlightened my understanding. And least of all, how to learn the technique. But no matter – it’s the split second moment that I always want to experience. Not the subsequent tagging.

  • From now on please keep in mind that the below is new territory for me. Work in progress on how to recognise the phenomena, and what to do about it.

There is the flip side though to the “arrest”. I’ve never been prone to hosting anxiety in my persona for a period of time. Yet I do find that I can experience the negative side of an arrest too, for the same split second.

It can be a phone call, or email subject. For example a grumpy client, or an unexpected expense. Or from the other side of love (being fear), and directed at me from a loved one! And I experience scarcity. From anything from 1 second to 60. Every so often for much longer (less and less as I age)

Such brief experiences release chemicals that compromise our immune system. The old flight or fight reaction that we have inherited from our cave days.

Trouble is our modern world often denies us a release of the flight or fight chemicals.

For me nullifying these quick gut reactions is ongoing work. I am blessed to know the value!

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 is easy to stagnate, to feel despair, and become overwhelmed if we dwell on the photo to the left as a outcome of a diagnosis. A near immediate demise, can be how it feels.

We could give up and not bother trying. Despite all the advancements and improvements in our world.

Like being born into royalty we may have been birthed into a tough situation, put ourselves there, or had it thrust on us.

A world where a scarcity based mindset can prevail. If we countenance it.

Good News: We can transform our lives when we decide to focus on gratitude! And make a little changes to develop a sincere trust in life in the future.

We are part of an unfolding story. And we can be the author who determines the point – the end game! Be it one of contentment fused with happiness, or a hero’s journey of adventure. Death could be this even!

It’s not so much being positive. More a change in thinking, where we take wisdom from the past. And bless our future, 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 at the time:

  • Seek the company of positive and reassuring friends, over those not so inclined. Continually focusing solely our own levels of positivity maybe the less productive use of those sort of energies.
  • Trust professionals – this frees up energy.
  • Look around at the hospital environment, considering how to engage the potential for wellness that is inherent.
  • Learn how to leverage the power of the mind.
  • Dare to dream! That rushing will slow down. That we can develop a set of wings and enter the (flight) 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!
  • Look for humor. Find it everywhere, rubbing shoulders with gratitude.

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

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 >>

Chapter 5 – Waiting and Watching

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

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

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

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

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

Time Line of This Chapter:

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

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

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

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

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

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

The answer was to do it in easy stages.

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

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

And then I’d go for a walk!

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

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

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

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

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

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

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

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

Or something else!

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

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

So I started reading a lot!

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

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

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

Technical Stuff:

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

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

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

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

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

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

Selflessness is another topic coming up!

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

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

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

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

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

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

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

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

His reply startled me:

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

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

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

Pat died a few weeks later! RIP AC.

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

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

And the trips to Dunedin continued.

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

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

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

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

Should we ever let fear become our friend?

fear itself disrupts spatial abilities

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

For myself Time is Spatial!

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

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

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

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

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

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

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

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

Decision Making on the Fly or Otherwise:

~

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

~

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Slow and Hard decision making saved the day.

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

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

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

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

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

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

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

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

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

Thoughts on Fear…

Fear can often be quite irrational.

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

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

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

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

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


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

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

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

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

What we can learn from Covid 19…

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

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

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

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

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

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

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

Get the full context here at The Guardian >>

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


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

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

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

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

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

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

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

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

Chapter 6 – Hope, Curiosity and a Roadie

Waiting and watching, while contemplating Faith, Hope and Charity

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

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

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

The perfect storm was brewing!

Time Line of This Chapter:

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

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

Crossing of the First Serious Threshold.

Recommended reading (placebos).

A surprise eye development.

And the usual technical take and treatment stuff.

Hope

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

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

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

Hope is:

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

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

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

~

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

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

And when Sept. 2018 came along…

So did a snow storm arrive. Actually in Wanaka.

Which is quite rare!

And then something totally unexpected happened…

Original Liverpool Bivy. Mt Aspiring National Park, New Zealand

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

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

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

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

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

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

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

Anxiety

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

With constant waiting and watching anxiety often became a companion.

I could hardly say it was welcome!

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

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

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

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

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

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

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

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

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

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

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

Curiosity

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

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

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

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

Unknown!

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

I’d find out soon enough I thought.

And I soon found out that curiosity feeds on itself.

Questions I was starting to formulate:

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

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

And then the storms arrived.

Mt Aspiring to the right.

Technical Stuff:

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

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

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

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

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

Back on the Road

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

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

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

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

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

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

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

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

Facing the Music time

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

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

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

Big decision making time

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

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

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

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

~

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

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

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

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

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

You Are the Placebo by Dr. Joe Dispenza.

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

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

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

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

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

Mural Clyde museum Central Otago New Zealand

Coaching on the road

< mural on a Clyde Museum external wall

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

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

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

Hope had come to the party!

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

The rational for my decision was quite simple:

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

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

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

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

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

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

Oh and I liked the altruistic aspect!

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

Chapter 7 – Towards Remission

Was the Hope!

Decisions had been made to sign up for the clinical trial on offer. Technically an application. 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. My distraction for each of the comings and goings to Dunedin Hospital over almost a couple of years.

Broad thinking set in, on what the upcoming road might feel like. Bumpy or smooth!

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

  • Making the most of the outdoors before treatment.
  • Establishing Agency: My ten point plan, turned to fifteen or so.
  • PET/CT scan in Christchurch.
  • Wanaka Autumn Art School.
  • Feeling like a puppet.
  • Photo of self and lumps.
  • Emptying the mind.
  • The lighter side of extra strength placebos.
  • The first chemo treatment and scary observations.
  • Discovering walking.
  • My Green Card.
  • Photo of self sans lumps.
  • Two great books to read.
  • Techy talk.
  • Decisions.
  • Cycle #2 meeting three nurses, after treatment. And the role of attitude.

My mode of transport to and from Dunedin had been my wickedly capable 4wd Land Cruiser camper.

But a funny and telling thing happened after proceeding to the left in photo on my way to Dunedin. Onto a relatively easy side track. One I’d researched that’d take me higher on the Rock and Pillar Range.

I encountered a muddy bog hole. I got out and examined it. And suddenly realised I had no stomach for taking it on. Because I just might get stuck.

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

Big sky country on the Rock and Pillar Range.
Well known for it’s severe winds.
The Great Moss Swamp to the left.
Now called Logan Burn. After it was dammed.
Where I was planning to spend the night.
Gentians – an alpine native.

My favourite camping spot I’ve used before.

But this time I went exploring in the morning. And to my delight, needing a bathroom, I found the perfect toilet setting. With three choices!

24th March 2019

Everything was speeding up at this point in time. The acceleration was a relief!

There were many things needing my attention prior to my first treatment. Some imposed – tests to be done. And as many high quality and optional experiences that I could fit in.

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

This was something I decided not to dwell on. I’d have to find alternative nurturing environments. But all in good time!

Establishing a sense of agency. Thus setting the scene for resilience:

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

  • Visualisation – well established technique athletes use to maximise performance.
  • Reduce my Cognitive Biases, or at least ensure they’re not toxic, but rather happy (50 of when you’re ready).
  • Increase socialisation.
  • Meditation. There are many styles. I prefer audio guided.
  • Practise Mindfullness and make it a habit ( it can of course be your meditation!)
  • Crank up the doing of things you really enjoy.
  • Balanced diet. Reduce processed foods. Snack on nuts. Enjoy various fruits.
  • Learn to breathe efficiently, then practice at every available moment of awareness.
  • Regular exercise. Zero in on what you like best.
  • Develop curiosity (to offset anxiety).
  • Read great literature (it sharpens empathy, which in turn aids being grateful (every morning on waking up, stretch and make a mental list of everything good in life).
  • Did I mention being Grateful! For gratitude is. . . the ultimate state of receiver- ship.
  • Avoid toxic and energy draining people, and similar social media.
  • Don’t waste time and energy Googling your disease in detail. Exception being links supplied by hospital staff or your doctor. Why learn the detail they’ve taken years of training and practice to grasp.
  • And lastly here is the paradox to the above: Be much more than a passive recipient of treatments – options and the receiving of are best served by inviting participation.

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.

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

Thanks Psychology Today website

Entering the urban world…

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

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

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

Hagley Park.
Christchurch Art Gallery. Not sure of the artist but not the person on the T shirt.
Outside Christchurch Art Gallery.

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.
Our tutor.

Our tutor David from Australia as above, is about to toast a friend recently departed. A couple of days before this workshop day at Bendigo Central Otago.

His plan was I reckon, that by doing this in front of us all, he’d generate some emotional looks for us to photograph.

With what I had coming up the following week or two, I found the exercise rather thought provoking!

From this point on, I was aware that my body chemistry was about to change. A puppet dancing to a tune not yet known!

On the morning of my pending treatment I was able to walk to Oncology at Dunedin hospital. Only several minutes away from a hospital nominated hotel.

I had been upstairs once to look at the treatment room. It was a superficial look and I nicknamed it the zombie room. As it turned out this was not a good concept. I was to learn that it was very much more. A room of kindness, in fact.

It contains about a dozen sophisticated reclining chairs and about one bed. All spread over two areas. Each not quite visible to the other. “L” shaped sort of.

Walking there, then up the stairs and into a small waiting room, gave me plenty of time to think.

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.

I’m happy to report, though, that as I waited, my mind was empty. I’d started this process two days before. It was an intuitive decision, one that I was to realise later, that had great value.

I did not have to wait long before a nurse came and introduced herself to me. She led me to the only bed. So much for the empty mind though, as I immediately realised that a bed is the place to be if something goes wrong!

The process before my first IV started was a lot more involved than I’d anticipated. There were many questions about how I was, allergies etc. I thought I’d be getting the chemo IV in my arm. But no. There were a handful of other medications. Anti nausea steroids, and anti gout etc. Plus Panadol. I lost count!

I’d never had a cannulation before either. A line inserted into a vein in my arm. The tricky thing is it’s not like a quick needle insertion into the vein in the crook of the elbow to get bloods. But rather an insertion of a thin metal rod covered by a plastic tube. The rod is then extracted, dependent on being in the vein. If not then another vein is sought.

And hopefully into an easy-to-find vein (some people’s veins are hard to find and frail). Potential targets are usually made obvious with tapping and heat from a little electric blanket etc. The target has to be away from a joint. If chemo leaks into a joint it can trigger the likes of gout.

Of note is that the plastic tube is flexible. And not likely to cause damage if the patient happens to move into an awkward position. If the flow gets interrupted the electronic pump beeps a warning. The pump is mains power with battery backup, so a visit to the toilet is quite straight forward. Getting tangled in the tubes being the only inconvenience.

It all took ages. Pre medications also meant at least another 30 minute delay. Before the real deal. And benchmarks recorded such as oxygen uptake, pulse and blood pressure.

At this stage the clinical trial drug was also introduced. Acalabrutinib capsules – 1 twice daily

All joking aside, understanding of the placebo effect is far from complete. There are many aspects to it’s proven effectiveness. e.g. persuasive words from our health specialist can effect better outcomes. “Fast-acting, extra strength”, will very likely become true.

Ditto for the nocebo effect.

At last the pump was turned on, and I reconciled myself to perhaps 5 to 6 hours on the bed.

I figured out that it is very difficult to predict how a a first chemo cycle will play out. Configuration of the electronic pump to a slow delivery by a couple nurses is the norm. (Safety cross checking occurs at every step).

Vital signs monitoring, in my case, occurred every 30 minutes. They’re were on the look out for a lowering blood pressure reading. And if detected delivery slowed down even more.

There was a distinct emphasis on being well hydrated and comfortable too.

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:

There was a middle-aged woman opposite me with a few people around her; many family I imagine. They were chatting away at the periphery of my hearing. The cadence of the conversation changed though. Looking across I could see her losing it. Skin colour and general body posture was changing. It was very dramatic.

With astounding speed nurses, trolleys and a doctor were on the scene. Almost immediately. Privacy curtains drawn. Leaving me opposite wondering how it was all going to play out. Twenty minutes later, to my relief, I heard her talking again.

By this time my brain was quite fuddled. But two important things registered: 1] how the game could change in minutes. 2] there are amazing resources on hand, to see us through. The second point reassured me. I was in the best of hands.

I realised that monitoring patients in detail is imperative. It would not be safe or practical in a medical center.

I also learnt that I’d get a dedicated nurse each time. This person looking after 2-3 patients though. And also that they’re trained to cover for each other. Not only for lunch breaks, but for when an emergency occurs. Engagement and care of one patient might occupy two nurses for an hour. Btw the ratio was about one male to several females some-days.

And so my first day went. My first half of my first cycle had been uneventful. Apart from being careful to not fall over when I got off the bed, I was able to walk back to my hotel. Driving would have been crazy though.

Back at the hotel, I tried doing nothing on the sofa. But it did nothing to mitigate what I can only describe as a different type of misery.

So at Robyn’s suggestion we went out for a meal, at a funky restaurant I’d not been to before. It had some nice art work.

It was a good idea to celebrate, and it made me feel 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!

Progress

Within hours of returning home lumps in lymphatic system started to diminish. This was especially welcome in my lower eyelids. And my touch(stone) on the right side of my neck was especially welcome, to leave!

Comment came from my clinical trial nurse too, when she said, “Looks like you’re having a total response”. Which led to my asking what other options exist. They were ‘none’ and ‘partial’.

My morale took several upticks! It was quite amazing.

A scary set back.

Harris mountains from Wanaka. An early snowfall.

Back home a few days later and starting to adjust to a new ‘me’. I developed an unusual headache. Suspecting something I rang my GP. It was reassuring to establish that the medications on the green card were on hand.

I recommend being a proactive patient engaged in the process. And not a passive recipient of treatments. It’s very empowering. I knew I was never going to understand all the subtle technical details. I have found being proactive is easily possible at multiple different levels.

About a day and half later and sporting a headache like I’ve never known before it was time to visit my GP. Temperature was 38 degrees and rising.

It was 8pm on a Sat. night. And a younger doctor started her examination of me. The green card seemed to be non preferred reading. I started thinking I’d have to get assertive when my GP arrived, and we were soon back on track.

Which meant a saline IV and into an ambulance for a trip to Dunstan Hospital. About an hour’s drive away. Going backwards in the dark on a road I know quite well was pretty weird. And the ride was rough. Surprisingly!

I was immediately placed in an isolation room.

Bloods taken, and my skin photographed and the image sent to Dunedin (it was thought I might have measles). The duty oncologist recommended that I not be given any more of two oral medications.

The bloods were good – no neutropenic sepsis (which is life threatening).

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

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

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

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

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

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

Breaksea Girl

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

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

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

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

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

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

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

From Wikipedia.

The author’s website >>

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

God’s Hotel. By Victoria Sweet.

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

The author’s website >>

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

Technical Stuff:

A Study of Bendamustine and Rituximab Alone Versus in Combination With Acalabrutinib in Subjects With Previously Untreated Mantle Cell Lymphoma – Full Text View – ClinicalTrials.gov

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). And as mentioned a Acalabrutinib capsule twice daily.

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

When I walked in the door it so happened that three of my nurses were all together. Two of them looked at my new beaming, non lumpy, face and smiled. They were old campaigners and had had a very hands on approach to my lead up to treatment. Including my induction into the ways of chemo. The third, much younger, did not realise who I was for quite some minutes.

They followed up on the smiles by saying, “well done”. To which I replied, “thanks to your skill and hard work!”. One of them then stated that my attitude had more to do with my total response than their skill and technology.

I did not believe them at this point (or later, because as the monthly cycles went by they kept repeating it). So when opportunities presented I asked for reasons. And further assurances were forth coming.

I now think there is something in what they were saying. Reinforced by another old campaigner theater surgery nurse (turned oncology day treatment ward). Having time while monitoring me, she elaborated with some stories. And stated, “We’ve seen this before, and it might be a couple of decades before we understand it”.

Looking back this was when my experience of what was happening went from linear, to non linear. Providing me with a curiosity, and a fascination with, “The Power of the Mind”. The seed to research and write, was sown. With an emerging duality: “The Power of the Unconscious Mind”!

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

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

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

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

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

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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.

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