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.
- 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.
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.
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…
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!
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.
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 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.
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!
And about a week after my discharge from Dunstan Hospital, I’m looking more like my original self.
My health had reached a Tipping Point. This book gives some very astute examples. Not health related, but there are parallels.
My reason for including this recommended reading is that sometimes massive change can be effected by a very small change, or a series of. If life is looked upon as a trajectory then just one astute change can alter it.
The Tipping Point: How Little Things Can Make a Big Difference is the debut book by Malcolm Gladwell, first published by Little, Brown in 2000. Gladwell defines a tipping point as “the moment of critical mass, the threshold, the boiling point.” The book seeks to explain and describe the “mysterious” sociological changes that mark everyday life. As Gladwell states: “Ideas and products and messages and behaviors spread like viruses do.”The examples of such changes in his book include the rise in popularity and sales of Hush Puppies shoes in the mid-1990s and the steep drop in New York City’s crime rate after 1990.
Up until treatment was underway, my sense of health progression had been decidedly linear. But then it changed. And this amazing story outlines probabilities and possibilities for us all. One of the most beautiful books I’ve ever read. Memorable!
God’s Hotel. By Victoria Sweet.
San Francisco’s Laguna Honda Hospital was the last almshouse in the country, a descendant of the Hôtel-Dieu (God’s Hotel) that cared for the sick in the Middle Ages. Ballet dancers and rock musicians, professors and thieves — “anyone who had fallen, or, often, leapt, onto hard times” and needed extended medical care — ended up there. Dr. Sweet ended up there herself, as a physician. And though she came for only a two-month stay, she remained for twenty years.
I wanted my son to have a copy of this book for Christmas, but it was not readily available in New Zealand. However the University Bookshop in Dunedin imported a copy for me.
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”!
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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