Was the Hope!
Hope is:
“A thing with feathers”, Emily Dickinson
Decisions had been made as to treatment options. A plan formulated.
The days, almost frivolous, were about to come to an end. Such days, the equivalent of wine and roses. Across the raw landscape of Central Otago.
What might the upcoming treatments feel like. Bumpy or smooth!
Time Line of This Chapter (March – June 2019):
- Refining 4wd driving attitudes.
- Establishing Agency and Resiliency: My ten point plan, turned to fifteen or so.
- Embracing the urban.
- PET/CT scan in Christchurch.
- Wanaka Autumn Art School.
- The first chemo session.
- Emptying the mind.
- Salvation in walking
- My Green Card.
- A scary setback.
- Relaxing reflections from a hospital bed
- Two great books to read.
- Techy talk.
- Decisions (noting less is good).
- Cycle #2 meeting three nurses, after treatment. And the role of attitude.
- Patient/doctor relationships.
My mode of transportation to and from Dunedin was my trusty 4WD Land Cruiser camper. On my way to Dunedin, I turned left to take a side track that I had researched, which would lead me higher on the Rock and Pillar Range. However, I soon encountered a muddy bog hole that gave me pause. After getting out to examine it, I suddenly realized that I had no stomach for attempting to tackle it, as I was afraid I might get stuck.
So I turned around, parked, and went for a delightful walk for a couple of hours.
Everything was speeding up at this point. There were many things needing my attention prior to my first treatment. Tests to be done. And as many high quality bucket list experiences that I could fit in.
I knew full-well that my wanderings in the high country would be curtailed for sometime.
To establish a sense of agency and resilience, consider the following steps:
Did I say 10 points earlier? Well with agency established came some breathing room. And the list was enlarged.
- Visualize success using well-established techniques that athletes use to maximize performance.
- Reduce cognitive biases or ensure they are not toxic, but rather positive.
- Cognitive Biases list, (50 of when you’re ready).
- Increase socialization to improve well-being.
- Try various styles of meditation, but consider using guided audio meditation.
- Practice mindfulness to create a daily habit and reduce anxiety.
- Engage in activities that bring you joy and make you feel fulfilled.
- Eat a balanced diet that emphasizes whole foods, and snack on nuts and fruits.
- Learn to breathe efficiently, and practice breathing exercises throughout the day.
- Exercise regularly and focus on the activities you enjoy the most.
- Develop curiosity to offset anxiety and foster personal growth.
- Read great literature to sharpen empathy and cultivate gratitude. Every morning, stretch and make a mental list of everything you’re grateful for.
- Avoid toxic people and social media to protect your energy and well-being.
- Don’t waste time Googling your disease in detail, except for links provided by hospital staff or your doctor. They have the training and expertise to provide the information you need.
And just memorise these feelings… bring your awareness
back to a new body… to a new environment… and to a whole new time… and when you are ready, you can open your eyes.
Remember, you are more than a passive recipient of treatments. Invite participation and be an active participant in your healthcare.
Your ability to take action, be effective, influence your own life, and assume responsibility for your behavior are important elements in what you bring to a relationship. This sense of agency is essential for you to feel in control of your life: to believe in your capacity to influence your own thoughts and behavior, and have faith in your ability to handle a wide range of tasks or situations. Having a sense of agency influences your stability as a separate person; it is your capacity to be psychologically stable, yet resilient or flexible, in the face of conflict or change.
Thanks Psychology Today website
Entering the urban world…
Up until now, this whole story has had an outdoor landscape setting. Times change!
The new journey.
A flying visit to have a combined PET and CT scan. I never asked why. It seemed obvious that prior to treatment, it’d be wise to have a few baselines. This was one of a few, e.g. heart etc.
The health system had booked me into a motel just 20 minutes walk from the old Square and Cathedral.
I enjoyed not having to drive anywhere (they also arranged a taxi from the airport)! So I made the most of the occasion…
But wait there is more! Dates had been set for the annual Wanaka Autumn Art School.
And this meant I could attend. Squeaking in about a week before my treatments started. I figured that attending was a fine way to get me “out of myself”. Good company and stimulation always wins!
photography, with a bit of landscape
as well.
Our tutor, David, from Australia (as mentioned above), was about to give a toast to a recently departed friend. This was a couple of days before our workshop day at Bendigo in Central Otago. I think his plan was to evoke some emotional expressions from us that we could capture in photographs.
With my upcoming schedule in the following week or two, I found this exercise to be quite thought-provoking. From that moment on, I was aware that my body chemistry was about to undergo a change, like a puppet dancing to an unknown tune.
Yes, I was apprehensive! But committed.
Life had been becoming just too miserable!
Time to get better!
◀The current look was not good enough
photo by Tim Hawkins, Cromwell. At the above mentioned Autumn Art School Workshop.
First of many visits to the hospital day treatment room
I arrived at the hospital day treatment room for my first chemotherapy session, and surprisingly, my mind was empty as I waited in the small waiting room. I had made the decision to start this process intuitively two days before, and it turned out to be a valuable decision.
I didn’t have to wait long before a nurse came and led me to the only bed in the room. However, my sense of calm was short-lived as I realized that a bed was not always a good sign.
The process before starting my first IV was more involved than I had anticipated. The nurse asked many questions about my health, allergies, and other medications I was taking. I thought I would receive the chemo IV in my arm, but there were several other medications, including anti-nausea steroids, anti-gout medication, and Panadol, and I lost count.
I had never had a cannulation before, and it was a tricky procedure where a thin metal rod covered by a plastic tube is inserted into a vein in my arm. If it’s not in the vein, the nurse tries to find another vein. This procedure can be uncomfortable, especially if the vein is hard to find and frail.
The plastic tube is flexible and unlikely to cause damage if the patient moves in an awkward position. However, if the flow is interrupted, the electronic pump beeps a warning, and the nurse checks to ensure that everything is fine.
Before starting the real deal, I received pre-medications that caused another 30-minute delay, during which my vital signs were monitored, including oxygen uptake, pulse, and blood pressure.
Finally, the pump was turned on, and I prepared myself for the long haul of 5 to 6 hours on the bed. I soon realized that it was difficult to predict how the first chemo cycle would play out. The nurses configured the electronic pump to deliver the medication slowly, and they cross-checked every step for safety.
Vital signs monitoring occurred every 30 minutes, and the nurses were on the lookout for any lowering blood pressure readings. If detected, delivery slowed down even more. There was a distinct emphasis on being well-hydrated and comfortable too. Overall, the entire process took a long time, but the emphasis on safety and comfort was reassuring.
Then it was time to look around and take in my surroundings. The other patients were in various poses. Sleeping, talking to friends, eating, reading books or on their laptop/device.
Some looked ill and stressed. Others not so, and quite healthy and happy. The mix quite amazed me. After awhile all I wanted to do was sit and watch. And I got drowsy. But the 30 minute intervals of checking my vitals, did keep me interested. I had a vested interest!
A sobering sub story:
As I waited in the hospital day treatment room 3-4 hours into my own treatment, I observed a middle-aged woman sitting opposite me with a few people, presumably family, chatting around her. Suddenly, the tone of their conversation changed – she went quiet, and I could see her skin colour and overall posture changing dramatically. It was a frightening sight.
In a matter of moments, a team of nurses, trolleys, and a doctor appeared on the scene. They swiftly attended to the woman and drew privacy curtains around her. I was left alone, wondering how it would all play out. Twenty minutes later, I heard her talking again, and I was relieved to know that she was okay.
This experience made me realize how quickly the game can change, and how crucial it is to have access to excellent medical resources. I felt reassured knowing that I was in good hands and that the hospital staff was equipped to handle any emergency that might arise.
I also learned that patients are monitored closely, which is essential for their safety. Each time I came to the hospital, I was assigned a dedicated nurse who looked after 2-3 patients at a time. These nurses were trained to cover for each other during emergencies or lunch breaks. I also observed that the engagement and care of one patient could occupy two nurses for an hour. It was interesting to note that there were more female nurses than male, but all were highly trained and efficient.
Overall, the first half of my first cycle had been uneventful, and apart from being careful not to fall over when getting off the bed, I was able to walk back to my hotel. However, I realized that it would have been dangerous to attempt to drive myself.
After returning to the hotel, I attempted to relax on the sofa, but it did little to alleviate the unique misery that I was experiencing. At Robyn’s suggestion, we decided to go out for a meal at a trendy restaurant that I had never been to before. The restaurant had some stunning artwork on display.
Going out for a celebratory meal was a great idea and it made me feel much better.
After the meal I discovered something very useful:
Walking, made me feel much better!
And so it became my feel good habit, for not only the next day, but for the next 30 months of cycles! Dunedin sure can deliver…
My second day of treatment was uneventful. And having proven myself as a robust recipient of treatments it went a little faster.
Then the next day we headed home. And I had a new companion. My own very special green card. e.g If I felt unwell traveling then there is a hospital at Ranfurly on the route home. I’d call in there, and wave this about under everyone’s nose!
Within hours of returning home, the lumps in my lymphatic system started to diminish. This was especially noticeable in my lower eyelids and the touchstone on the right side of my neck. I was thrilled to feel some relief!
One of my nurses remarked, “Looks like you’re having a total response.” This led me to ask for elaboration, and was told that “none” and “partial” were the only ones.
Hearing this news, my morale took several upticks. It was quite amazing.
A scary set back.
After returning home (to new snow on the hills), I started to adjust to a new version of myself when I developed an unusual headache. I immediately suspected something was wrong and contacted my GP. Thankfully, the medications listed on my green card were available, providing me with some reassurance.
I believe that being a proactive patient is essential in the treatment process. Instead of being a passive recipient of treatments, being actively involved is empowering. Although I knew that I would never understand all the technical details, I found that being proactive was possible at multiple levels.
Unfortunately, after a day and a half, my headache worsened, and my temperature rose to 38 degrees. It was a Saturday night, and I had to see a young doctor who wasn’t familiar with my green card. As I felt that I would have to become more assertive, my GP arrived, and we were soon back on track.
I was given a saline IV and transported by ambulance to Dunstan Hospital, an hour’s drive away. Going backward in the dark on a road I was familiar with felt strange, and the ride was bumpy, which was surprising.
Upon arriving at the hospital, I was immediately placed in an isolation room, and my blood was taken. My skin was also photographed, and the image was sent to Dunedin as the doctors suspected I might have measles. The duty oncologist recommended that I should not be given any more of two oral medications. Fortunately, my blood tests came back good, and I did not have neutropenic sepsis.
In summary, being a proactive patient is vital, especially when experiencing a setback. Although it can be intimidating to take an active role in your treatment, doing so can provide you with peace of mind and ensure that you receive the best care possible.
This was the view the next morning. The Old Man Range not quite visible.
I’d had quite a good sleep, and was starting to feel better. The quietness of the room and a cottage hospital atmosphere really helped! There were 2-3 doors nurses had to pass through even. And with PPE – well it was hard to see who was who.
More tests were ongoing. But turned up nothing. So it was diagnosis by subtraction!
To my delight though I did know one of the nurses.
When Emily was a young girl, her dad a very experienced bush pilot flew a few of us into Marks Flat a few times, to climb Mt Hooker (still not done after about 80 days in the area).
I was starting to feel quite at home at Dunstan Hospital!
◀ 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.
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.
Up until treatment was underway, my sense of health progression had been decidedly linear. But then it changed. And this amazing story outlines probabilities and possibilities for us all. One of the most beautiful books I’ve ever read. Memorable!
God’s Hotel. By Victoria Sweet.
San Francisco’s Laguna Honda Hospital was the last almshouse in the country, a descendant of the Hôtel-Dieu (God’s Hotel) that cared for the sick in the Middle Ages. Ballet dancers and rock musicians, professors and thieves — “anyone who had fallen, or, often, leapt, onto hard times” and needed extended medical care — ended up there. Dr. Sweet ended up there herself, as a physician. And though she came for only a two-month stay, she remained for twenty years.
I wanted my son to have a copy of this book for Christmas, but it was not readily available in New Zealand. However the University Bookshop in Dunedin imported a copy for me.
Technical Stuff:
For my first 6 cycles (every 28 days), I had rituximab on the first day and then bendamustine on the second. Followed by the antibiotic pentamidine (since it was suspected that a similar oral antibiotic medication, led to the hospital admission as above).
As time went by I found I did not need auxiliary medication so much, e.g. anti nausea. Or dextromethadone etc.
Decisions I had to make during and between every treatment cycle:
Before arrival at about 10 am each treatment day I had to decide what I’d like for lunch. And purchase same as I walked to the hospital each day. Thirty five minutes if I bypassed the Gardens and University campus. Usually I took the longer more scenic route. And especially on the return, as I was so slow post IVs. But it felt very good to just amble. Yes, walking for me was “the thing”
Monthly decisions just came down to how best to incorporate rest in my daily routines, and how best to pace the travel.
The next visit to Dunedin for Cycle #2
Upon arriving for my second cycle of chemotherapy, I was met by three nurses, two of whom had been instrumental in my previous treatment. They immediately noticed the difference in my appearance, with a new, non-lumpy face and neck, and expressed their approval with a smile.
As they congratulated me, I thanked them for their hard work and skill, but they insisted that my attitude played a significant role in my recovery. I was skeptical at first, but as I continued with my treatment over the next several months, they repeated this sentiment, and I began to take notice.
One day, a theater surgery nurse who had turned to oncology day treatment ward shared some stories with me while monitoring my progress. She elaborated on the concept that they had seen this before, and that it could take decades to understand the phenomenon.
At that moment, I realized that my experience was not linear but rather nonlinear, and I became curious about the power of the mind. This curiosity eventually led me to research and write about the power of both the conscious and unconscious mind.
In conclusion, the support of my nurses, coupled with my own positive attitude, played a crucial role in my recovery. The power of the mind is a fascinating subject that requires further exploration, and I am grateful for the insights I gained from my experience.
There are some interesting concepts that sit behind the doctor patient relationship, for grasping both of these concepts are central to humility both for the carer and the cared. For the treated and the treater.
Thanks Dr Jim Vause – GP emeritus, for the above.
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.
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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.