Waiting and watching, while contemplating Faith, Hope and Charity
There was a sense of Waiting and Watching coming to an end.
Symptoms were becoming more evident. Day-to-day life was getting miserable 24/7. But sleeps were good. No night sweats – a common symptom (which I’ve never had).
The perfect storm was brewing!
Time Line of This Chapter:
- Decisions relating to treatment for mantle cell lymphoma
- The unexpected loss of a friend
- Back on the Road
- With important lead up discussions on Hope, Anxiety and Curiosity.
- Technical Talk
- Back on the Road part #2
- Dunedin Chinese Gardens
- Facing the Music
- BIG decisions: Crossing of the First Serious Threshold.
- Coaching on the Road
- Recommended reading
- A surprising and unexpected eye development.
As I waited and watched, contemplating faith, hope, and charity, I sensed that the end was near. My symptoms were becoming more evident, and day-to-day life was becoming increasingly miserable. However, I was still able to sleep well, without experiencing night sweats, a common symptom that I had never had before. It seemed that the perfect storm was brewing.
Hope had not been a significant factor in my earlier cathartic writings. However, my friend Dr. Jim Vause, who has been a great help in these writings, pointed out its importance. During this wait and watch phase of my illness, I had been constructing a 10-point plan to wellness in my head, unsure if it would be 10 or anything in the range of 7 to 12.
Looking back, I realize that hope had always been present, forming the basis for the 10-point plan. Hope is a natural thing that can sometimes be overlooked as a fresh cause for optimism, especially when we are ill and the odds seem against us.
In conclusion, hope is an essential component of any recovery plan, even when the outcome seems uncertain. By recognizing and nurturing this natural source of optimism, we can find the strength to overcome our challenges and emerge stronger on the other side.
- 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.
And when Sept. 2018 came along…
So did a snow storm arrive. Actually in Wanaka.
Which is quite rare!
And then something totally unexpected happened…
An old friend and work colleague at DOC died in a helicopter crash near the Wanaka Airport. He was younger and disease-free, which made the news even more shocking.
◀ The old Liverpool Bivy ex Mt Aspiring National Park, now in storage in Wanaka, was setup for his farewell.
This tragedy was a stark reminder of the fragility of life and the unpredictability of our existence. It made me realize how easy it is to take things for granted and worry about the future, even though we never know what lies ahead.
As I pondered the loss of my friend, I found some small solace in the fact that he was simply off to work that morning, and five minutes later, he was gone. It made me appreciate the present moment more and recognize that worrying about the future is futile.
In conclusion, the sudden and unexpected loss of a loved one can be a powerful wake-up call that reminds us to live in the present and cherish every moment we have. It’s essential to let go of our worries and fears about the future and focus on making the most of today.
So after Hondy’s farewell I figured it’d be beneficial to hit the road again in my camper truck.
Anxiety: A Constant Companion in Waiting and Watching
During my cancer journey, waiting and watching became a constant state of being.
And with it, anxiety often became my companion. However, it was hardly a welcome one.
I remember a time when I experienced anxiety of a different sort. It was during an incoming storm in a very remote location (photo above – Forgotten River Col in The Olivines. Mt Aspiring National Park). We were exposed and had to act fast. We packed up and descended, only to be faced with another type of anxiety: dealing with hypothermia. It was a longer-lasting anxiety that we couldn’t immediately change.
Despite my condition, I found myself entering a deeply incised and bush-filled gorge, trying to find our way to a safe location. I staggered about like a drunk, but hypothermia had taken me beyond anxiety. We eventually found a safe spot and hunkered down in tents beside a flooded river for a few days. We were weak and food was in short supply, but we kept busy and focused on our next steps.
Being trapped in any situation can trigger anxiety, and this is a big factor in dealing with Post Traumatic Stress. And of course, we’ve all experienced anxiety in many guises, triggered by who knows what!
But during my cancer journey, constant waiting and watching over many months was a different experience. I found myself ill-equipped to deal with this type of anxiety. It took a lot of energy and I struggled to find ways to keep busy.
Looking back, I realized that keeping busy is a good way to manage anxiety. And when the opportunity came, we attracted a passing helicopter that took us to safety. The experience taught me that accepting a situation and keeping busy can help us manage anxiety.
So, when dealing with illness, it’s important to remember that anxiety is a natural response, but it takes energy to deal with it. Keeping busy and focusing on the next steps can help us manage anxiety and maintain hope.
As I went to the Dunedin Hospital, waiting and watching, a subtle curiosity developed in me. I wondered what I could learn from this experience, and what I could do to mitigate the worst outcomes.
Research has shown that curiosity can help alleviate anxiety. Check out this article from Radio New Zealand:
I began to welcome the unknown, and started asking myself questions such as:
- How would it feel?
- Where would I end up?
- Could I handle it?
I found that curiosity feeds on itself, and I started to formulate even deeper questions, such as:
- Did my subconscious decide it was a good idea for my body to host a potentially terminal disease as a distraction from past hurts?
- Can a person with a terminal diagnosis make a deal with their cancer to look after each other?
I realized that if I was heading into the unknown, I might as well welcome it with curiosity and an open mind. By doing so, I found that I was better able to handle the waiting and watching that comes with a long-term illness.
Oh and for all the upcoming privations and challenges on our Olivine Ice Plateau wilderness expedition, we did at least manage to climb a peak called Climax.
And then the storms arrived.
Mt Aspiring to the right.
In February 2019, I began to feel that the waiting and watching period had an expiration date. Coincidentally (or perhaps not), I found out that my routine three monthly checkup was going to be at the nearby Dunstan Hospital.
After driving for an hour, my personal nurse, who was very experienced, conducted the examination instead of my oncologist. She performed the usual hands-on feeling of my lumps, all mapped out by my lymphatic system.
Non-verbal communication was key, and everything I needed to know was communicated without words. Of course, she had to discuss her findings with my oncologist before I could receive official confirmation.
It was now time to consider my cancer treatment options. I knew that a defining meeting would be scheduled next in Dunedin, but it would not be with my “team” – instead, a substitute oncologist was to see me. This was unsettling, so I requested a postponement until my regular oncologist was back at work. To my delight, my request was granted.
I believed that any problems arising from an added progression of the disease caused by a two-week delay would be offset by the fact that trust had already been established. I did not want to compromise this very important aspect.
Back on the Road
It was after all autumn. Settled weather, and of course gorgeous colours everywhere.
I did a damp but delightful tramp in Dunedin’s Silver Peaks. Others at Bendigo near home, and the Buster Diggings (both historic gold mining areas). All were delightfully physical (I was so grateful that I was still fit enough to enjoy them all immensely).
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.
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.
Facing the Music time
It was time to “face the music” as they say. Off I went to Dunedin again, to ascertain “what next”. The disease was now manifesting in my lower eyelids. And could only be relieved with hot compresses. Obviously something had to be done!
But there was a bonus. My cousin Deirdre and husband were going to be there as well. They had bought their pellet fire down for servicing before winter. As well as doing some touristy stuff (which included my son) I was able to help, as by now I knew my around the city quite well.
Big decision making time
The Crossing of the First Threshold, was about to begin…
I never really felt courageous, but hey, when embarking on a journey, guides often come with the package. And I knew even then that I had some great ones by my side!
Somewhere along the way placebos and nocebos grabbed my attention. As being a very important factor. It was time to learn about the possibilities.
I perceived this as a “fashionable” read. But is was very useful. What was best for me though was it taught me a lot about meditation. It helped me begin what is now a well established habit. A part of my healing!
You Are the Placebo by Dr. Joe Dispenza.
But if you really want to understand placebos this is the book!
Cure: A Journey into the Science of Mind Over Body by Jo Marchant.
A rigorous, skeptical, deeply reported look at the new science behind the mind’s surprising ability to heal the body.
Later in my journey a friend recommended it. This coming from a highly qualified nano technology businessman, who actually knew of her when visiting Oxford Uni. (and her robust grasp of science), was very helpful.
Published: 1st May 2017
ISBN: 9781925498462 and available as an Apple iBook download. Probably Kindle also.
Coaching on the road
◀ mural on a Clyde Museum external wall
There had been a time conflict for my oncologist in Dunedin. She had to talk me through the nuances of the various treatment options. And ensure I understood. This is not only very practical, but also a legal requirement I think.
So by arrangement on the way home I stopped at Clyde for awhile, and waited for her to ring me. It worked a treat. And took almost 30 mins.
During the conversation I made the remark that cancers seem to be very sneaky beasts. Her reply startled me, “it’s about to get quite a shock, and won’t know what hit it!” It was the aggressive tone that surprised me; very positively I might add.
Hope had come to the party!
Prior to making treatment decisions I felt a degree of stress. And now everything seemed more simple. Or was I just settling into the concept of a “long haul”?
I was warned by my oncologist: “the big challenge will be the monthly travel (and other appointments for scans etc.), and if this starts to knock you about I’ll change things”.
For sure I perceived a possible win/win scenario!
PS I quickly learnt that nearly all aspects of my proposed treatment would have to be done at Dunedin Hospital (and definitely not the lovely cottage style Dunstan nestled by the Old Man Range near home). As well as being a research hospital Dunedin also hosts The Otago University Medical School. And the School of Dentistry nearby. Where my son works.
Earlier, I overlooked the relevance of disease symptoms manifesting in my lower eyelids. At first, a soft swelling was quite subtle, but as it set in, it became very irritating – it felt like a loose eyelash was stuck under each lower eyelid simultaneously.
When I mentioned it at my pre-treatment clinic in Dunedin, I was told that it was not normal. However, my oncologist immediately picked up the phone and, with impressive haste, I found myself in the hospital’s eye department a couple of hours later.
A registrar quickly examined me and said, “the disease is present for sure, you need treatment straight away. But hang on while I get a second opinion.” His supervisor then turned my eyelids even more inside out and confirmed the diagnosis, stating that the swelling would go away quickly once treatment commenced. I also learned that the condition was quite serious as it could cause blindness due to undue pressure on the rear of the eye. I was immediately booked in for on-going monthly check-ups.
What surprised me was that they did not wait to pass on the diagnosis/information to oncology before informing me. Rather, they stated, “you need treatment!” This, to me, was a very timely and immediate second expert opinion.
PS I was amazed at the sheer number of people/patients coming and going from this department. It was staggering and in the hundreds daily.
And after all that on the last clinic before treatment. I went out yet again for lunch with my son. A lovely habit we were forming. One that was easy, as he works near the hospital.
BTW current state of health, as of March 2022, is pretty good!
The next post/chapter will be titled something like, “The First of many Treatments” or “Towards Remission”
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