Moving forward or going round in circles

Only nine days have passed since we returned to New York after our idyllic month in Europe, but it seems much longer. The relentless humidity poses its constant dilemma of putting up with either the fetid atmosphere or the noise of air conditioners, and it is sobering to reflect that there are many more weeks to endure before we can expect any relief. Every year I promise myself that never again will I suffer a New York summer. Perhaps this time my hope will finally come to pass.

 

It did not help that I managed to pick up a covid infection on my travels home, which led to some mild cold symptoms but also, more annoyingly, the need to stay indoors most of the time and to mask whenever I was near others. Thankfully that seems to have passed, but it is my third cold-like experience since April so my resistance must be low.

 

The return to the US also seems to have heralded another new phase in my cancer journey. A scan on Friday was followed by a series of consultations yesterday. There does seem to be new tumour material developing, and now the added complication of a tiny new spot on the opposite side of my brain.

 

The situation does resemble the months after my initial diagnosis. Lots of tests did not help a lot to clarify the diagnosis, but after a while the oncologists decided to act based on their best available guesses. This time their first action will be a biopsy next Monday of the other side of my brain. The hope is that this will either show up the new spot to be harmless so they can concentrate back on the right side, or something less benign in which case new treatment will have to address the issues on both sides.

 

Whatever the findings, we are expecting this procedure to signal only the beginning of this new phase. It will probably take a few interventions before a decision is made for a prolonged course of treatment. Part of me is quite relieved that this is happening during the summer, when there is precious little else to do in New York, and with some apparent urgency, so that we can hope that our move to Portugal is not delayed.

 

Nonetheless, all the news yesterday was a bit confusing and disturbing and will probably take a few more tearful days to digest fully. We have been in this situation before, and that experience has given us some tools to help us cope.

 

Important among those tools is to find ways to stay positive and to be thankful. As usual, relief comes as soon as we focus our minds into those directions. It is a simple and wonderful balm.

 

One reason for cheerfulness is our confidence in our clinical team, notably our lead oncologist and his neurosurgeon. They are obviously both established leaders in their fields, and their communication and behaviour is exemplary. Yesterday, bouncing between consultations, I heard evidence of them changing their minds about the best approach at least three times. Some people might be annoyed by that, but I only derived positive emotions and insights from their indecision. They acted as a true team, consulting each other frequently, as well as allowing us into their deliberations, showing respect as well as humility. We are truly lucky to have these two gentlemen at our service.

 

Then I can always derive comfort from how I am usually feeling. How could I be about to keel over when I generally feel so well and am able to carry out such a regular life? There may be damage in my brain, but it still seems to be able to function quite well. When I look around me in the street on in a subway car, most of the people of my age seem to be much worse off health-wise than I am.

 

There were a few quotable quotes from my consultations yesterday. Each oncologist visit involves a series of cognitive and physical tests, and I continue to ace all of them, except for the glaring gap in my left-side peripheral vision, which is no great inconvenience. The oncologist delegates all this to his nurse practitioner, but I noticed yesterday that he watched quite carefully. His verdict at the end was quite telling. He described me as neurologically intact, a new term to me. It was clear that he was quite impressed with this, and I could only reflect how lucky I am compared with most of his patients at this stage of their treatment. Later in the day the neurosurgeon appeared to show a similar emotion.

 

Then I feel truly blessed with the support I have received from friends and family, especially from my wife. We trust our medical team, but it is even more valuable that we trust each other. During difficult weeks like this one, we have established a routine of stoic acceptance followed by quiet reflection and then shared determination to move forward together. It is so obvious to each other that our primary motivation is the welfare of our partner, as we continue our parallel journeys to different destinations.

 

 

Our team is also supported by our shared dream of moving back to Europe and being able to spend even a short period of healthy time there together. We can almost touch the moment when that dream can become a reality now. The shared goal binds us together. We occasionally debate tactics, but always from an attitude derived from that shared goal. This is another powerful blessing.

 

No doubt I will once again be consumed by dread in the hours before the procedure on Monday, and no doubt there will be even tougher challenges ahead, perhaps very soon. But, almost all the time, I do not find it difficult to remain hopeful and thankful. By now we also have a lot of experience to draw on. Whether the current set of challenges feel new or somehow a repeat of what we have already been through, we feel we are as ready as we can be to face them, and to face whatever consequences may follow. I will remind myself of that as I ride the subway on Monday morning to the next episode in this drama. Our mantra has not changed. Reject anger, accept fear and fate, find solace in thankfulness. We hope that this mantra can still guide us, no matter how many times we seem to go around in medical circles or how much uncertainty we face.          

Three favorite Portuguese words

 June in Europe is turning out to be as wonderful as I hoped. The wet spring transitioned to beautiful summer just as we arrived. Our week in Girona, a Spanish city I had never before visited, was a delight, and now we feel very much at home at our villa in Portugal, sharing precious times with our three-year-old granddaughter.

 

Of course, thoughts creep up on us about activity in my brain from time to time. I can only celebrate an absence of worrying symptoms and prepare for what the next scan might tell us when we return to New York. That news might end up modifying our plans but we try to avoid being paralysed into inactivity by the uncertainty. Plan A is to move here rather soon, and plan A should remain the primary focus until something necessitates a change to plan B or plan C.

 

One of the enjoyable aspects of plan A has been to invest in improving my Portuguese. Progress is slow but noticeable and gratifying. I found a great website before my diagnosis, then paused my learning for a while, only to restart it about a year ago. The activity gives me a lot of pleasure.

 

Three Portuguese words have come to have a special meaning for me. The first of these is LHE, not a word with any emotional attachment but more of a technical curiosity. It is the dative pronoun meaning to or for him or her, the same as LUI in French. The oddity in Portuguese is how it is pronounced, because it is hardly spoken at all. A leading L in Portuguese is very gentle, while an H after another consonant, a common feature, is also only mildly expressed, with something of a Y tone to it. Then a closing E, like in French (when without an accent) is virtually silent. So LHE consists of three virtually silent letters strung together. It sounds almost like a neutral exhale. I find it beautiful, and also amusing, as well as frustrating when my computer never understands me when I try to say it.

 

My second Portuguese word is perhaps the archetypal word of the whole language. It is SAUDADE, which can translate into homesickness, but usually signifies something deeper, maybe a visceral longing. Longing for what? That could be estranged family, or a special place, or simply peace or comfort. It probably originates from the days when Portugal was a nation of seafaring explorers such as Vasco de Gama. You can imagine large crews on boats undertaking long, uncomfortable journeys of uncertain duration, and dreaming of home comforts. It may be erroneous, but I also associate Saudade with the traditional Portuguese form of song called Fado. A Fado performance is invariably full of longing, most often (but not always) for a lost lover. The tone is emotional and slow, like some forms of Gaelic folk ballad. It is always a pleasant experience listening to a good Fado performance, and I often find it conjures up some sense of Saudade in myself.

 

My third Portuguese favourite is LAR, a masculine noun usually written or spoken as O LAR. Its literal translation is HOME, but it means it in the deepest possible sense. If you are taking the bus home after a day at the office, you are going A CASA, or home in the simplest sense. O LAR is home of the heart, not just home of convenience or habit. It is LAR that the ancient mariners were thinking of while experiencing Saudade. Like Saudade, LAR usually refers to a place, but it could be a person or a time as well, or some combination of all three.

 

At O LAR is how I feel the moment I land in Portugal, and this visit has been no exception. Moments of serenity abound, often involving tears. But this time the experience has been expanded. We first landed not in Portugal, but in neighbouring Spain, and already I found myself feeling at home. Then, on my first morning in Girona, came a moment of rare sublime serenity. During the half hour morning break in rehearsal, I took a stroll through the Suddenly, I felt at O LAR, in a place I had never visited before. The feeling persisted throughout the stroll and returned many times later in the week.

 

I spent some time trying to rationalise what was going on. Could it have been the way the city was laid out, archetypically European, with few cars, narrow alleys, towering historic landmarks, terraces, doors, courtyards, public squares, and a general sense of faded elegance? Or the people, also elegant, moving with grace and without hurry, the young and old obviously satisfied with life, groups mingling and enjoying some tapas and a beer whatever the hour? Or perhaps did Girona remind me of some other place at some other precious time?

 

I could not work it out and I still cannot. But the sense of LAR was palpable and remains so. Perhaps this whole continent, or at least large chunks of it, is my LAR. And of course it conjures up longing deep within me, Saudade for the time when I can once again call Europe my literal LAR as well as a metaphorical one. Maybe the sensation will change once we are here and the reality of various unconsidered or forgotten downsides kick in. But I doubt it. O LAR is deeper than that.

 

Learning Portuguese has been a pleasure, and I look forward to continuing progress. But just as I found earlier with Swedish and Dutch, languages are tough to master and bring frustration along the journey. On this trip I have forced myself to initiate conversations in Portuguese, but with very limited success. Unless my counterparty is prepared to talk very slowly and with many pauses, they quickly change to English to make things more efficient for both of us. I hope I can move beyond this phase. Health permitting, I will give it my best shot. And I will seek out chances to use my three favourite words in context.   

Moments of Serenity

 I appear set for another extended period of diagnostic uncertainty. After a small new growth appeared on a regular MRI during April, I have had two further scans. Some indicators suggest this might be the beginning of a new tumour, while others indicate something more benign, such as minor new scarring following the treatments of last year. So far, the growth is too small to biopsy, so most likely there will be more scans required before any more decisive intervention is considered.

 

In the meantime, I can continually remind myself of my good fortune. I don’t have any new or worsening symptoms and can live an unencumbered life. If anything, my peripheral vision is improving a bit, though most likely that is due solely to adaptation. This weekend we embark on one more extended trip to Europe, including singing courses at the start and the end and the chance to catch up once again with our precious grandchild. I must remain on the lookout for symptoms and will have a few pills in my back pocket in case they emerge.

 

This is planned to be our last trip before our much-anticipated permanent move back to Europe. That prospect fills us with excitement, and gradually we are ticking all of the boxes required to enable the move to take place before many more months have passed.

 

While it would be ideal to be finalising our move during a period of less medical uncertainty, we will not let that get in our way unless pressing practical reasons emerge to stay in New York. This is all a part of our ongoing challenge to stay ready for good news and for bad news at the same time. If at any point we veer too far towards pessimism, it would potentially sacrifice the joy of living in hope, but swing too far into optimism and we may not be ready to respond effectively to setbacks.

 

We have become quite adept at navigating this narrow path along the cliffs of life, with its sheer drops on either side. Our main asset is that we are traversing the path together, holding each other tightly and warning each other of any pitfalls ahead. We do stumble on occasion, often before an appointment or when its news is frightening, but, so far, we have avoided major falls.

 

I like to envisage the two sides of this narrow path as being represented by embracing life and accepting death, two of the attributes displayed by the people I characterise as “second chancers”. Sometimes it is easier to embrace life, to glory in its wonders, to anticipate in what it may be about to bring, to celebrate its awe. At other times accepting the prospect of death comes more to the fore. That is about acknowledging death’s inevitability. In my case, it helps to believe that after death there is only peace, nothing really, no suffering. Helped by some lovely homilies during advent, I feel I have developed quite a strong acceptance. I don’t have a fear of death, and I am reassured greatly by observing that all of those I love are in strong places, with good chances of thriving after I have gone. Every time my wife shows the same acceptance, or when one of my children displays maturity, I can more easily find a peaceful acceptance myself. Thankfully, these reassuring events occur all the time.

 

I find that the view from my pathway along the cliffs can be magnificent. My illness has turbo-charged my emotions, even while I am not taking steroids, and many of those emotions are wondrous. The path has helped my wife and I to find a new closeness, and we can enjoy the breathtaking view together.

 

Periodically, I have what I am calling moments of serenity. Originally, I labelled such events as “take me now” moments, but that description could be misleading. When they occur, I am not asking God (or however I characterise a higher power) to take me now. Instead, these are moments of such wondrous awe that they enable me mentally to pronounce that I would be ready to die in that moment. In my thinking at these times, my life has been filled with such wonder that it would be a fitting moment for a peaceful closure. It is not “take me now”, far from it, but more like “Thank you, and I would be ready whenever you are”. I hope this formulation makes some sense. I only know that the feeling comes powerfully and clearly at times, and when it does it fills me with awe and gratitude.

 

Triggers for moments of serenity can be as simple as a marital hug, or of witnessing joy from an act of kindness, given or received. Movies and TV series can trigger them too. I have always enjoyed shows with complex developments of human character, and I have recently been seeking these out. If death or serious illness Is one of the core subjects of a well-made show, it becomes more likely to engender serenity. A good recent example was a recent PBS serialisation called Maryland. The show explored suicide, betrayal, companionship and all aspects of human relationships, notably communication within a family.

 

Perhaps it is not surprising that singing can bring about serenity in me. Most commonly this happens during Sunday mass, where I am privileged to be a part of a high-quality small ensemble that can really express good music. Nowadays I often sing bass in that group, and that new experience has opened up new joys for me. I find that is much easier to feel the entire effect of an anthem from the bass part. It is the root, the core, the foundation for everything else. When singing tenor, I can duet with another part, but I am usually too engrossed in my own line to be able to feel the whole song. From the bass line, that is much easier.

 

Last Sunday at mass we sang Mozart’s Laudate Dominum, and a moment of serenity duly transpired. It fitted the most common pattern. The writing is peerless and expressive. I have sung the piece countless times and know it very well. But I had never before sung the exquisite bass line. As we finished, I was close to tears. “If I am taken now, then I can find peace in having enjoyed a full and blessed life”.

 

While there is high uncertainty about the new growth, we must expect our cliffside path to be narrower and more treacherous than usual. We will surely stumble, perhaps catastrophically. But until then we will soldier on together, ready to embrace life to the full and accepting of its inevitable end. High on the cliffs, emotions are powerful and often wonderful. And special moments of serenity might be the most wonderful gifts that path has to offer.      

Uncertainty

 There is an old cliché in business literature that the only constant in our world is change. I never found the quote particularly helpful, and I don’t really believe it either. Change does indeed come along, and we can even induce it, and it is certainly helpful to be ready for it. But there are many other constants. An example of another one is uncertainty.

 

Uncertainty is closely linked to ambiguity, and these are concepts I did find useful as a business leader. Certainty makes life easy. If a situation is clear and our expected response is clear too, then we can just get on with our jobs. But most situations are far from certain, and coping with uncertainty and ambiguity is something we can all strive to improve at. I found that engineers tended to struggle with ambiguity. If a senior manager gave a presentation, the complaints afterwards often revolved about a lack of clarity in the message. The engineers wanted to hear a clear description of a challenge, its proposed solution, and what they personally were expected to do about it. Then they could get on with what they did best, engineering.

 

But this attitude is often of limited use in the real world, and it tends to limit leadership potential as well. Many people can solve a defined challenge. Nowadays machines are rather good at it. Rather fewer people can create a plan amidst uncertainty, a plan with contingencies and with flexibility but one that still has a good chance of making progress.

 

Thinking back (a long time) to my career as a manager, I might go so far as to claim that finding comfort with uncertainty and ambiguity is the characteristic that best defines effective leadership. I also recall trying quite hard to encourage my own teams to develop this skillset. I had few tools to help me, but I would expose people to ambiguous situations and avoid giving false comfort by accepting their goal of making their lives certain as possible.

 

I have learned that becoming more comfortable with uncertainty and ambiguity is also very useful when dealing with ill health. The medical stories I hear most often from acquaintances tend to follow the same pattern. It starts with symptoms, which lead (often too late) to the door of medical professionals. The patient starts with the thought, and the hope, that the first doctor will take one look at them and immediately diagnose the underlying cause and a course of treatment. They are almost always disappointed. The initial consultation leads to tests and perhaps a referral to deeper specialists. Possible causes are ruled out, but a clear diagnosis is elusive. The symptoms may get worse despite various medications being tried. Perhaps eventually something will work, or a definitive diagnosis becomes available, but often that clarity is never reached. The fortunate patients learn to accept this frustrating reality. Despite decades, even centuries, of medical experience and research and technology, most situations are uncertain and ambiguous, and even the best doctors spend a lot of their time guessing.

 

I observe many people going through this sort of pattern. The uncertainty can seem like the hardest part. We all have some desire for certainty, even if the certainty is not pleasant. Becoming more comfortable with all the ambiguity and finding ways to enjoy life amidst all the uncertainty is a real challenge.

 

For most of the time, I have been lucky enough to follow a rather different trajectory with my cancer. True, it started with a symptom (weaker peripheral vision) and there was a long period near the beginning when the diagnosis was incomplete. But from early on I have known enough about my own illness to be sure that the longer-term prospects were bleak. Because things could have gone south very quickly, I did not become too concerned with the uncertainty, but instead, fuelled by steroids, became very active in preparing for possible early death. Then, once it became clear that the operation had been quite successful and that the radiotherapy and chemotherapy were having a beneficial effect, we were able to consciously move our planning horizon further forward, and even to focus on a hopeful present.

 

That positive attitude has been challenged during the last few weeks, after the April MRI scan revealed some new growth. Inevitably, the uncertainty affected us emotionally, since the range of possible outcomes is so large. This growth could be nothing, or may disappear, or may remain benign, but it could also develop rather quickly and dangerously. This week we visited the oncologist in a more anxious frame of mind than usual. We should not have been surprised to be told that tests remain inconclusive. Like my acquaintances, it looks like we will have to get used to this sort of news.

 

Luckily my symptoms, such as they are, remain stable. If anything, my peripheral vision is improving slightly. During chemo cycles I still have some side effects to put up with. But there are not yet new or worsening symptoms that may indicate development of the cancer.

 

But, in this phase of uncertainty, I am not immune from the rookie errors that I made before and that others seem to be afflicted by. In the early stages, I did suffer from phantom symptoms, that is imagined symptoms. Whenever anybody asked me if my hands and feet were tingling, immediately they did. Yesterday I made a classic error and referred to google. I have been told that this latest growth is close to the left ventricle in my brain. I did not even know that the brain had ventricles. Mister google told me about symptoms indicating a loss of function of the left ventricle of the brain, among them sudden loss of memory. The moment I read that my memory seemed to vanish completely. It took a while for reason to kick back in and remind me that the symptom ghost had struck again.

 

Luckily, we have enough experience now that we should be able to move beyond this sort of trap, even while the high uncertainty remains. I must follow my own business advice and find ways to become comfortable with it. After all, uncertainty is much better than certain bad news. Second-guessing everything the doctors tell us does not do any good. Mr google is even less help. And, blessed by being largely symptom-free, we can throw our energy into enjoying our lives, embracing each other and family and friends, and cherishing another trip to Europe next month.

 

Certainty is appealing. But uncertainty includes more outcomes that are better. Uncertainty is usual. We do well to embrace it as best we can.               

The Waiting Room

 So far, one of the many reasons to be thankful regarding my cancer has been the absence of much physical pain, whether chronic or acute. I suppose most of us carry a mental image of severe illness that involves significant physical suffering, but that has not been my experience so far, and perhaps my experience is closer to reality for many others too.

 

It is annoying to be frequently pricked with needles for IV or blood samples, but most of the MSK phlebotomists seem to be remarkably good at painless pricking. Nausea and fatigue are debilitating, but hardly painful. For me, MRI scans are simple and pain-free. The itchy rash that afflicts me during cycles of chemotherapy are unpleasant but not especially painful. The recovery phase after an operation is certainly tough because it is so hard to find a position that is comfortable, but the pain is usually quite mild and transitory. So far, I can only really describe the vertigo that developed last summer as more painful than mild discomfort, and thankfully it sems that problem is solved, for now at least. I am quite proud that I have managed to get this far without feeling the need to take a single painkiller, although I believe some were administered to me after my operations.

 

Whenever anybody enquires, I always explain that the emotional journey has been tougher than the physical one. Even with emotions, we have usually managed to find an effective way forward. Being a strong couple working as a team has been instrumental in that success. But we have endured some tough times emotionally, and no doubt there are other tough times ahead.

 

Last week we watched a good TV series called Expats, which is probably not for everyone but really resonated with me because of my background. One of many lines from the series that set me thinking was a claim by a character that the opposite of talking is not listening, it is waiting. I found this to be quite insightful. Talking, a conversation involving listening and exchange, makes most situations less stressful. When we don’t talk then things can fester. We wait, hoping that resolution will arrive of its own accord, but often that does not happen, and the waiting becomes progressively more painful and more damaging. Sometimes we have no choice but to wait, but often we waste opportunities and suffer as a result.

 

When I recall the toughest parts of our emotional cancer journey so far, waiting is something of a common theme. The difficult times do not always involve waiting, but often do. Receiving bad news can be devastating, but we find ways to cope and quickly recover. The periods of anticipation have tended to be harder.

 

We had some potentially bad news last month, after an MRI scan revealed an area of concern. After a long run of clear scans, we were not fully ready for this news, and it sent us into a tailspin for a day or two. But we found that we had a routine to cope and to recover. We let the news sink quietly, reflecting. We hugged each other and cried a lot, but we avoided too much talk and speculation. Sure enough, after thirty-six hours we were calmer and ready to talk about what had happened, and the emotional pain became very manageable.

 

I find emotional pain to be more difficult while waiting for something to occur. The challenge depends a bit on the situation. The category I find easiest is when I am suffering from a symptom and must wait for it to weaken. That happens with nausea and with my itchy rash. Especially with the itchiness, there is nothing to do but wait for it to go away. I sit quietly, either with lights off or reading. I try not to scratch, but instead find ways to distract myself. It helps that by now each symptom tends to follow its set pattern. Now I know that, if I am patient, the itchiness will reduce after a while, and I will be able to sleep. That makes it tolerable. That type of waiting is much tougher before thew pattern has been set. When vertigo first struck it was truly horrible. That was only partially because of the discomfort involved. Worse was the sense of helplessness and fear. What is happening? What is about to happen? Am I dying? Should I panic?

 

Waiting is the most common experience while in hospital. Even when the staff do their best to make the experience as positive as possible, in my experience hospital is no fun at all. I am never able to relax and somehow I feel as though I have lost some control over my life. My bed is never comfortable. There is always lots of background noise, and sometimes foreground noise too, such as a deaf neighbour watching Fox News. The machine monitoring the drip is always malfunctioning. It is always too hot or too cold. Going to the bathroom involves complicated manoeuvres or a time-consuming request for help. Nights are long, but also short owing to frequent interruptions. Information arrives at strange times and in strange ways. There is always a risk of being moved around.

 

I try to help myself endure a hospital stay as best as I can, but all these inconveniences are tough to work around. I push the staff to let me independent. I dress in street clothes. I walk around the ward. It helps, but it is not enough. Most of the stay feels like waiting, and with no peace.

 

Another difficult time waiting is before important appointments. I am finding this week difficult because tomorrow I have a scan and I will see my oncologists to discuss the results next Tuesday. The range of outcomes is especially high this time, and I find myself speculating about all the possibilities and what they would imply.

 

I expect the stress to grow through this week and peak on the day of the appointment, perhaps in the waiting room before we are called in. This pattern is reminiscent of other times in life. As children we all feared the dentist. We became especially stressed in the waiting room. In the end the pain was never as bad as we anticipated. Waiting for exam results was similar, and so were driving tests.

 

This afternoon I found myself worrying obsessively about my upcoming appointment. So I needed to follow my own advice. I am not in hospital, so I had every chance to find my own solutions in peace. Slowly I was able to regain a sense of proportion. I could pray. I could distract myself. I can embrace my wife tonight. We can talk. I can do something kind. I can remind myself always to be thankful.

 

Unlike a driving test, I also have no chance to influence the results of tomorrow’s scan. What will be will be. We must simply stick to the same principles we have followed from the beginning. Be prepared for the best outcomes and be prepared for the worst too. Whatever the result, take some peaceful time to reflect and process and then face the future together with thankfulness.            

Flunking my Finals

 Last week was our toughest since last October. Our long series of clean MRI’s was broken, and that sent us into a difficult place emotionally. We feel better now, and ready to face whatever may lie ahead.

 

Anticipating the finish line has a strange effect on people. Examples are abundant, especially in the world of sports. Three great teams are virtually tied entering the final phase of the English premier league soccer seasons. Last weekend, inexplicably, two of them lost home games to lesser opponents. Alan Shearer wrote on the BBC website that you could almost hear panic setting in to the dressing rooms. That is the finish line effect.

 

More graphically, last year video emerged of a runner leading a marathon race into the final straight. Imagine running for 40km and then seeing the crowds and tape and banners ahead. But something affected this poor runner, and he took a weird right turn into a side street, to the consternation of the watching crowd. It is no surprise that several competitors passed him while he was on the wrong track.

 

I have experienced the effect many times myself, to the extent that I try to force my mind against distraction. Most commonly this used to occur during bridge tournaments, Competitors play for several hours, following a design enabling everyone to play the same hands but bot simultaneously. While the event is progressing, it is possible to roughly assess how you are performing, and I made quite an artform of this self-assessment. If I was playing in a prestigious tournament and felt that my partner and I were doing very well, a finish line might mysteriously appear in my head. Thoughts such as “Wow, we could win this thing” would enter my brain. Without fail this was a recipe for disaster. Results would immediately plummet. It happened time and time again. This was my own finish line effect.

 

Despite my best efforts, the finish line effect kicked in during the weeks leading up to our visit to my oncologist last week. He had been so (cautiously) optimistic for so many months. I had completed cycle twelve of chemo, offering the delicious prospect of being moved into a monitoring phase. The scans had been clean for over a year. I felt very well, perhaps better than I did before I had cancer. Exciting summer plans were ready to be finalised. Workers had already started upgrading work in our Portuguese villa, anticipating our permanent arrival later in the year.

 

The finish line beckoned. Just reading the last few entries in this blog would offer the warning clarion call. Due warnings were always posted about being ready for what could come at any time and about the tendency of this cancer to return quickly, but the general tone betrayed some expectation of longer good health. All this stuff about second chancers and Key Moments of Truth and alternative therapies gives me away. I could not help myself.   

 

So it is no surprise that reality hit us with a thud last week. The oncologist remains optimistic, but found something in the latest scan that he wanted to monitor. I was to undergo a PET scan in early May, and in the meantime, I would face a bonus round of chemo. It is like buying bagels, you pay for twelve and get thirteen (although nobody has yet offered us any discounts on cycle thirteen).

 

Even though the prognosis is highly uncertain, we were devastated to hear this news. We had come to the meeting with all sorts of questions regarding monitoring, and suddenly these were rendered moot. The finish line effect had done its worst. I am not superstitious enough to believe that we brought this negative outcome on ourselves, but we surely let undue positive thoughts lessen our preparedness for the bad news.

 

We bounced back. My wife had a fortunate day off on Wednesday, so we were able to spend quiet time together, at home and on a walk. By that evening we are fully prepared once more to face our futures and to continue our policy of openness to friends. The bonus chemo cycle is proving quite straightforward, and now our main task is to stay patient until May 14, when we will visit the oncologist again to learn what the PET scan will have revealed. We will be very anxious that day while we are sitting in his waiting room.

 

Apart from the emotional anxiety, which we have learned to live with most of the time, our challenge has always been choose an appropriate timescale for planning. During the worst months we were reduced to planning only a few weeks ahead, but our timescale gradually expanded over the last twelve months. We always reminded ourselves that things could go wrong at any time, but we have been actively planning for the possibility of prolonged good health.

 

Should this change now? We recognise that we may have to adjust our plans, but for now we are carrying on with our preparations. Perhaps as an act of defiance, we just booked all our flights for our June trip to Europe. The workers are busy in our villa, and the anticipated date for our permanent move is still late September or early October. It helps to be able to anticipate this exciting future, even if such thoughts are more tempered by nagging doubt than they were a week ago. We remind ourselves that nothing has fundamentally changed, at least for now, so our plans should be substantially unchanged too.

 

We have been bitten by the finish line. The same thing will probably happen again. I am not sure if there is a way of avoiding the effect. We could have forced ourselves to think negatively, but only at the cost of much joy over recent months. We kid ourselves that we could have been more ready for the setback last week, but I don’t think human nature works like that.  Finish lines screw us up, and we just have to put up with it, and bounce back as best we can.       

Key Moments of Truth

 In my later years at Shell, my division ran an internal campaign called Key Moments of Truth. It was a rather nebulous thing and I’m not sure it was very effective. The idea was that we would all keep our minds aware of the potential to change the course of events for the better, either by grabbing an opportunity or mitigating a risk. Such moments come along at unsuspected times, and, after a training course and some workshops, we are supposed to be a little better at identifying them and then responding appropriately. I suspect that most of us carried on with our lives much as before, blissfully unaware of what we were missing, but at least the campaign gave us a good corridor slogan for a while. 

 

This concept came back to my mind recently while pondering the course of my cancer journey, within the context of celebrating what seems to be an unusually positive outcome so far. How did this happen? Were there some Key Moments of Truth along the way? Did I spot them at the time or only in retrospect? Might I be missing Key Moments of Truth at this very time, doming me to a worse outcome than would have been possible with a stronger response?

 

It turned out to be quite a simple matter of identifying three distinct Key Moments of Truth, all of them occurring during the second half of 2022. Each case has its own hero, and in each situation that hero chose a path that ultimately led to a benign outcome. If any of these three situations had been handled differently, I suspect that I would be dead by now, instead of sitting here in a state of quite good health wasting my time writing nonsense.

 

I am the hero in the first Key Moment. Indeed, this time was the only one in my entire journey where I feel I had any real choice of action. My good fortune was to notice a marginal change in my vision, and my heroic action was to trot off to an ophthalmologist to try to confirm what was happening and to discover what was wrong. Now that I Look back, I wonder if my left sided peripheral vision might have been deteriorating for months or even years, but I became of various indicators during July and August 2022. I undertook a long night drive home in poor conditions from the Washington DC area, and I seemed to find the trip more difficult than before. Then I started noticing that I was making mistakes with my reading, seeming to miss or mis-guess the left-hand word of a column. Finally, I spotted that I needed replay to clarify what had just happened while watching sport on TV. How had that goal happened? Was that really a strikeout? Suddenly watching all sports became like watching ice hockey had always been.

 

Initially I thought I was imaging my problem, and then I guessed it was something temporary in my left eye that would probably disappear in time. That inaction would have been my normal response, but something led me to the doctor this time. Perhaps I was lucky that it was mid-summer and I was a bit bored and fed up with air conditioning noise at home.

 

How smart that simple action proved to be. The ophthalmologist found nothing wrong with my eyes but was confused and credulous enough to consult his boss who suggested a field vision test. That test was mishandled but generated enough concern to refer me to a neuro-ophthalmologist. After I finally made it there in mid-October, it was a short process to identify the growing tumour in my brain. Another month of growth and I might have suffered a catastrophic seizure before diagnosis, and a month more growth might have made it too late to operate. Curtains. Kudos to me; perhaps I had learned something on that training course after all.

 

The hero of the second Key Moment was my wife. As soon as we found out that something was seriously wrong, she started hospital shopping. My wife is an excellent researcher and very persistent when pursuing a campaign, and in this situation, there was no stopping her. I was not much help. I find that Americans are generally too quick to find fault with hospitals, one of the traits that leads to a society with an unhealthy level of litigation. I remain sceptical that the differences in the quality of clinical care between hospitals are great, though the secondary aspects such as communication and pace are certainly evident.

 

The research of my wife led her to the doors of Memorial Sloan Kettering and her persistence led them to accept me as a patient. It is still not certain how much of a clinical difference this made, but what is clear is that my original hospital initially declared a reluctance to operate on my tumour, while MSK followed a path that led to surgery, and that surgery has surely prolonged my healthy life. Both hospitals spotted unusual features and initiated a series of diagnostic tests, and both would have the same courses of radiation therapy and chemotherapy to hand. Would they have relented and operated too once they had a clearer picture? We will never know for sure, but the intervention to admission at MSK certainly feels like a Key Moment of Truth. Any story with my wife as hero is a good one as far as I am concerned.

 

My third Key Moment also strays into the area of medical speculation. It concerns the surgery ultimately performed by Dr Brennan of MSK on December 22, 2022. Any brain surgery is sensitive, but this tumour was clearly in a dangerous location since the other hospital had expressed reluctance to operate at all. Despite the risks, Dr Brennan took a course that would be able to remove the entire tumour. Then his patient, me, made his life still more complicated by having a seizure on the operating table, and then followed that up with a second seizure.

 

Dr Brennan later told us that I had snapped an unbroken seventeen-year streak by having these seizures. It is speculation, but I like to think that I only suffered the seizures because he was working in a very marginal area of my brain. Then, when the seizures happened, is a seventeen-year streak a good thing or a bad thing? Perhaps prior experience would have been helpful. I am surely fortunate that his intensive training kicked in, he handled the complication, and then had the courage to complete the operation as planned, when surely a safer course would have been available to him. That safer course would surely have left more cancerous material in my brain, and, in all likelihood, that material would have been resistant to subsequent treatment, and by now be growing again and in the process of killing me.

 

I am aware that I cannot produce any decisive evidence to support this explanation of events, but it certainly feels credible. This third Key Moment of Truth has Dr Brennan as a hero, one who gave me a far greater chance of prolonged healthy life.

 

Three Key Moments of Truth, three different heroes, and an outcome at the extreme positive end of probabilities. I am a lucky boy indeed, no matter how long this reprieve eventually lasts. Have there been subsequent Key Moments of truth already, ones that I don’t yet see the significance of? It is possible, and it is likely that other Key Moments of truth lie ahead. I only hope that when they come my supporting cast rises to the occasion once again.

 

The Shell campaign surely has nothing whatsoever to do with these outcomes. But it helped me pass another rainy afternoon of reflection filled with awe and gratitude.