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.