Introduction

Welcome to LikeMinds a place for those seeking a deeper meaning in life, as it can relate to having cancer.

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

This story is not about survival of cancer, but instead about quality of life.

The goal is to explore how good attitudes can sometimes effect change!

One way or another, life they say, is not survivable, so let’s make the most of it!

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

Otherwise please read on by scrolling down or by accessing the links in the footer (in case you landed here instead of the Home Page)…

This site went live on 19 Feb. 2021, from Wanaka, New Zealand and current state of health is excellent


Chapter 1 – the lead up to Diagnosis

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 Department of Conservation for a six month period spanning summer in 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 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.

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.

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 holding all the above in it’s grasp for awhile was the “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 to the ends of the earth. And then I thought drinks containing baking soda would help (where did that come from?)

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 sort of righteous!

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

But, for the moment 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 anaesthetist, 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 theatre full of about eight people. They pounced – I was out like a light, before I’d even settled to look about.

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:

A fine needle aspiration and bone marrow biopsy procedures were undertaken (sample too small, and evidence of the disease in my bone marrow. And this later test was apparently right down at a DNA level). Along with bloods (OK), a CT scan (defined locations) and a manual hands-on examination of my immune system and associated places: neck, chest, armpits, groin and stomach – looking for lumps (lots of various sizes).

Each 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. Outlining treatment plan options came next. Later too I noticed my knee was better – the tumour must’ve been pressing on a nerve!

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, if anything do I need to change to survive?

How best to prepare for the best and the worst?

Who would be willing, and more pointedly able to support me?

What should I do first!

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

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

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

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!

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

The mountains of Wanaka New Zealand

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

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 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.

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 locals are not frightened away for the winter!

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 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 skiing who had also had cancer. 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 all over the place. I did not enter the annual Merino Muster race though. And more specifically I did not help out doing photos, like other years. I’d become very aware of the importance of looking after myself in regards to energy levels and warmth etc.

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 though 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 energy in 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 can be subtle, or sometimes not. My experience was the former. But it is good to realise this and how it might play out straight away.

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!

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!

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

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

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. The most trivial information can be pure gold to a trained professional!