Simpler, clearer, better - but also new needs of acceptance

 Simpler, Clearer, Better – but also requiring Acceptance

 

Seven short weeks ago we were in Portugal, enjoying a relaxing and peaceful time with blissful walks and lovely meals. We still had the lovely weekend in Brighton ahead of us, a time for singing and family. After that we returned to New York. Since then, much has happened.

 

We suspected we were returning to face a period of uncertainty, after my scans had taken a worrying turn during the spring. As it turned out, July would include an operation, four more scans, many other tests, long phone discussions with experts, and even a day trip to Boston to consult a different brain cancer guru. The whole month felt like a change of pace, including more urgency and packed with uncertainty, but behind it all lay the need to accept a change in my situation. Barring an unlikely miracle, our dreams of a long respite would have to be shelved. Now, the cancer was winning, its effects were creeping closer, and perhaps the best we could hope for was to hold it at bay for a while longer.

 

Inevitably, we found several aspects of our July experience quite tough. Each scan result or consultation required some time to process and forced us to come to terms with a new reality. We were incredibly lucky to have so much dedicated effort on our behalf from such impressive experts, and their candour was also welcome: still, each time we had to come to terms with the implications. There was an operation to recover from, and that involved further intake of steroids, which as usual adversely affected how I behaved with my wife, inflicting additional strain on both of us.

 

Also, while information was always welcome, the path forward remained uncertain. The experts made it clear that in this phase of response to cancer, patient input became more important. This was a clear message to us, and something else that required processing together. Choices would mean trade-offs. Eventually those trade-offs would becoming difficult, such as deciding how much we valued a prolonged life when that life might be painful and put strain on carers. We would need to face those choices together, while their impact on each of us could be very different.

 

Some relief became available at the end of the month. Firstly, my daughter arrived for a visit of a week, 32 weeks pregnant. The three of us had precious times together. Around the same time, all of the medical inputs somehow converged into a clear plan of action, and much of the uncertainty lifted, at least for a time. The window for surgery was probably closing, unless for a very specific purpose such as draining a new infection. Medical trials remain possible, but unlikely and with very uncertain value, and that window would close quickly too.

 

However, new treatments were available and potentially valuable. A specific fifteen-day course of radiation therapy, combined with cycles of a different oral chemotherapy, seemed to make sense. We could keep an immunotherapy, and maybe even a trial, up our sleeve.

 

This burst of simple clarity was very welcome, even though it required yet more acceptance of a reality without much major upside. I duly started the two new courses during last week. So far neither have resulted in the side effects I have become familiar with: I have experienced no itchy rash and almost no nausea either.

 

Even so, fate dealt us a new dose of reality at the end of last week. On Friday afternoon I suffered an extended bout of disorientation. I was at times confused, found it hard to locate and read signs, and lost some dexterity. Fortunately, my wife was with me for the entire episode, which may well have saved me from falls or other serious mishaps.

 

This new development is clearly of concern. At least it passed and has shown no sign yet of returning. It might have been a reaction to a specific circumstance, such as the new treatments. The symptoms had similarities to seizure activity, which is something I can protect against through medication.

 

As always, there is much to celebrate and be thankful for. Memories of June and family visits are fresh and comforting. The resolution of the phase of uncertainty into a clear treatment plan is a relief, and that treatment has been easy to tolerate so far. I can still read, and write, and sing, and pray, and much else besides. We have reconnected with our old-folks home. The episode, scary though it is, did not cause catastrophic damage.

 

Perhaps most comforting to me, the new clarity has made another choice more clear-cut. It has reinforced my desire to relocate to Europe, and soon. This choice perhaps carries a few medical risks, and is certainly tougher for my wife than it is for me, since for her the consequences will take more time to emerge and then will linger for a long time. Our shared parallel journeys to different destinations come into ever sharper focus. Thankfully, the last month, with uncertainty resolved, has helped us to reach new levels of acceptance and readiness.   

Recovering from Recovery

 Last Monday I had brain surgery number five. It was a relatively small procedure as brain surgeries go, and I must have recovered quite well because I was singing by Thursday. Now I have another scar on the other side of my head to match the ones from previous procedures.

 

While the surgery and recovery went well, one purpose was diagnostic, and those outcomes are not so good. After a full year where treatment seemed to keep the cancer in check, it is now clearly proliferating within my brain (though thankfully not anywhere else so far). Because I have so few symptoms and feel so well, the oncologists can now try different treatments, which will include more radiation therapy, different chemotherapy and perhaps some immunotherapy, whatever those things all are. If I am lucky these can give me a further period of good health, but from here we have to also accept that health is more vulnerable, and symptoms could appear, progressively or suddenly.

 

We are so grateful for all the support we continue to receive, from medical professionals, friends and family. In tough weeks like the one we have just been through, that makes all the difference.

 

The procedures all seem to follow the same emotional pattern, and I make the same wrong assumptions every single time. The tendency is to focus on the procedure itself whereas the tough part is actually what follows afterwards.

 

I remember well the frenzy of activity I went into in the days before my first surgery. Once I went under general anaesthetic, would I ever come out again? What do I need to tell my wife and family, just in case? What if I do survive, but as a vegetable or with severe disability?

 

I have been around the same loops with each subsequent procedure, but with a little more realism and a little less frenzy. I don’t sleep the night before surgery, but I find it helpful to distract myself and to travel to the hospital by public transport, fooling myself that this is just an ordinary day.

 

Of course all of these worries are logically rather silly. Yes, procedures carry material risks, but I am probably far more likely to die crossing the road each day than I am on the operating table. It is rather like the feeling we all have waiting for a plane to take off. We are probably doomed to suffer the anxiety, but at least we can remind ourselves of some relevant statistics.

 

The same mood prevails into the operating theatre itself, though of course the odds of real physical suffering during an operation under general anaesthetic are even more miniscule. It can go catastrophically wrong, but I would know nothing about it, at least until I might revive from coma or whatever other consequence arose. Once again, there is little logical point in all this focus and worry, but probably no escape from it either.

 

So anxious do I become about the operation itself, I always forget that the tough time is usually afterwards. There are many recurring features, and I am never well-prepared.

 

First of all, I wake up, heavily dosed with anaesthesia and disorientated. The medical staff are discussing their findings, openly, not knowing I am awake. I hear things I would rather not, and then spend hours wondering whether I heard them correctly or even dreamt them.

 

Then I find myself in another room with the welcome presence of my wife. She and the nurses scramble to find some juice or tea, realising that I have consumed nothing for over 24 hours. The anaesthesia starts to wear off and the pain might build. With an open wound in my head, there is no way to lie and be even remotely comfortable. I start to understand that this will be my fate for the whole night.

 

This time I was lucky to have a quiet, spacious room on my own and with an attentive nurse almost to myself. I can start to give thanks that I am still alive and functioning and that nothing major seems to have gone wrong. But the night is long, with no sleep to speak of, and low levels of pain building up through the night. Smartly, I persuade the nurse to allow me to sit in a seat rather than try to lie in the bed. That helps but makes sleep even less likely. Even if I can doze a little, the nurse has to wake me hourly to check my functions. It is all a bit like an eight hour night flight in an undersized middle seat.

 

Then there is the inevitable visit at 6am from the interns in the surgery team. They try to pass on news, generally bad news, but their skills at this are not great and in any case I am struggling to focus, and only later remember all the questions I forgot to ask.

 

Luckily this time went very smoothly, and I was allowed to go home barely 24 hours after arriving at the hospital, pain wearing off and a little sleep possible at home.

 

But the worst part is still to come. The pain dissipates, but the job starts of processing what has happened and what lies ahead, and of communicating this news to family. These are always the toughest weeks emotionally. This time we had two hours or more of dedicated tele-meetings with wonderful experts, very illuminating but utterly overwhelming too, and a little foreboding as well.

 

The last difficulty with recovery is perhaps the toughest of all. Just like after my initial surgeries, I now know I am much more vulnerable to changes in my condition. That will be a constant worry for a while. I already notice the return of phantom symptoms. If someone asks if my hands are tingling, they immediately tingle. If I am prescribed more seizure medication, I conclude that a seizure must be imminent.

 

I know I have many things to be thankful for, and that also helps, in the end decisively. By the time we must face the next meetings and the treatments that will follow, we will be ready.

 

I apologise for being a bit morbid today. As usual, my main purpose is to crystallise my own thoughts. If my thoughts trigger anything useful in anyone who has a similar experience, that is a bonus. If it just depresses you, then I am sorry.

 

Perhaps now there will be no more surgeries, which is a sobering message in itself but at least spares me the cycle of anxiety and recovery. If there is another surgery, maybe I might even be smart enough next time to know that the part to prepare carefully lies not before or during the procedure, but after it.    

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.