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. 

Space for Alternatives

I am delighted to have reached the end of my current chemotherapy course, and somehow to have reached this milestone feeling better than I did when it started. It is not difficult to bid farewell to sixty nights of pills, all the nausea and fatigue and changes of appetite, and the other side effects like the itchy rash. Still, all that poison seems to have done its job, so was always welcome in my life.

 

We have deferred celebrating this milestone for the time being. Next week I have a regular MRI and the following week my oncologist will pronounce on its findings and his suggested next steps. I understand that a break from chemo is almost mandated at this point whatever my condition, to allow some time for recovery of platelet and white blood cell counts and a few other metrics. So even if we might possibly be leaving the door slightly ajar for the cancer, it and any other ailment would encounter a stronger immune system to impede its progress.

 

Still, reaching the milestone with such unexpectedly good health has filled me with awe and wonder and prompted a few tears. I find myself noticing small seasonal events and contemplating how I never thought I would have that good fortune. The change of the clocks and the evening daylight hours, some occasional warm sun, the colours of early flowers and blossom, the transitions through the end of lent and in Holy week, and even the start of a new baseball season have all made me pause and give thanks.

 

I see the main oncologist, a man we greatly respect, every eight weeks, although that might become more occasional in the next phase. Before each visit I make a list of questions to ask him, and I have noticed that over recent months that list has been very short. I have had my head down and been focusing on enduring the treatment and not really had space for much else. The path forward has been clear and obvious and the risks ever-present and known. It has been like the middle execution phases of some work projects, where distractions are unhelpful, and all energy should be focused on getting things done and handling any setbacks.

 

But this time it is different. I find myself waking up with my head full of questions. I haven’t started to write them down yet, but soon I will, and the poor man will surely face a barrage when he sees me, so long as the meeting agenda is not overwhelmed by fresh bad news. Most of the questions seem to fall into two categories. What can I do to make the cancer less likely to return, and what are the primary warning signs to look out for?

 

The first of these big questions is really one we could all ask ourselves all of them time. The answers are quite likely the same as they would have been had I my chance run into a leading neuro-oncologist before the brain tumour had developed at all.

 

Beyond the obvious and well-known answers such as not smoking, avoiding addictions, controlling stress and sleep as well as possible, avoiding ultra-high processed foods and too much salt and sugar, and fitting in some exercise, I am curious as to whether any answers will be forthcoming. As far as I can tell, the primary answer might be to have better luck, or at least have less susceptible genes. That would be quite frustrating, but also perhaps somewhat reassuring, because at least I could conclude that I did nothing daft to bring the cancer on. Fifty years ago, the prevailing wisdom would have suspected that the root causes of my cancer must have included a large dose of sinfulness. Part of me wonders if, twenty years from now, folk might look back at today and be astonished to recall that we currently consider the main root cause of many cancers, including mine, as plain bad luck.

 

The second category of questions, the ones about warning signs, should be easier to answer, and perhaps I know a few of the answers already. I am anxious because for sure I was lucky last time to spot the small change in my peripheral vision and to take some action about it. The sooner we can identify a problem, the more likely we are to be able to fix it.

 

My wife was probably having similar thoughts about lifestyle and behaviour when she recently encouraged me to visit an acupuncturist. She has started seeing a practitioner to help her with muscle and joint issues and is encouraged by her progress. I am an advocate of acupuncture, albeit a cautious one, after the treatment helped me fifteen years ago when I had very sore shoulders. Acupuncture helped me, but the real cure was to retire from work and to stop lugging heavy computer cases around with me all the time.

 

I had my first session earlier this week, and I remain curious. I am fascinated by the idea that sticking needles into an arm might offer relief to a kidney, but such wonders seem now to be generally accepted. The stretch in credibility was simpler for an aching shoulder than it is for brain tumours, but perhaps this Japanese gentleman will have something useful to offer. His answers to my questions are sure to be different to those of the oncologist, but perhaps they are also valid. The first visit failed to deliver any magic wands (how could it have?), but I came away convinced that he was not a scam artist and that if he tried a treatment, it would be because he thought it might work rather than as a ruse to take money from our insurance company.

 

Such diversions are probably another sign of a progression to a new phase in my cancer journey. Six months ago, buried deep in chemotherapy, I would not have been open to complementary approaches, but now I find that I am, at least a little bit. I reached a space where there is room for such alternative thoughts. That in itself is a cause for celebration. 

The Magnificence of Ann Wroe

 More than twenty-five years after first subscribing, I still find The Economist a splendid read. For anybody using English language, it must be the most informative, intelligent, balanced and even entertaining publication available. Americans may gripe a little at the Anglified use of their mother tongue, but probably no more than my complaints about how the New York Times daily Connections game frequently employs idioms or practices unfamiliar to anybody from outside the USA.

 

When I was recently asked to compile my own Desert Island Discs, simply as an exercise, I chose The Economist as the reading material I would most like to be granted on a desert island. But I didn’t choose the whole magazine, but only a compilation of their back pages. That is because that page is reserved for a weekly obituary, which has been written for the last twenty years by Ann Wroe. I am frequently moved to tears by her reflections on a recently deceased individual, by a combination of thought-provoking insight into her chosen subject and the sheer beauty of her writing.

 

When I first subscribed, the only way to enjoy The Economist was through its print edition, either at a news stand or through the post. That is still my preferred mode of access, and I am still amazed at how fresh news from Wednesday can be elegantly transcribed, printed and then delivered to my mailbox each Saturday. It takes the Inland Revenue and others many months to accomplish much simpler tasks. Notwithstanding my preference, I am grateful nowadays on occasion for the opportunity to read my favourite magazine from my laptop. And technology offers even more than that these days, including a series of webcasts offered to subscribers. Last week I registered for one of those for the first time. It took a special subject to tempt me into giving up n hour of my time for medium I don’t usually use. That special subject was an interview with my literary heroine, Ann Wroe.

 

I was not disappointed. Sometimes characters we admire turn out not to be quite as saintly as we imagined when we get a chance to see them in a new way. Ms Wroe was just as charming and as elegant to listen to during an unscripted chat as she was in print. She came across as curious, humble, and funny as well as informed, poetic, and even musical.

 

It was fascinating to learn about her weekly process to produce her obituaries. Over the weekend she reads many published obituaries and comes up with a few candidates for her piece and eventually with a preference. There is an editorial meeting at 11am each Monday morning which results in a decision. No doubt after twenty years of experience and a rather regal reputation at the magazine, editors rarely challenge her own instincts. Once she has a subject, she spends the rest of Monday reading and listening any material she can find about them, especially anything resembling memoir. By the end of Monday, she aims to have decided upon a style, opening, closing, and general outline for her obituary, leaving her Tuesday to write the piece in time for a publication deadline on Tuesday evening. Wow!

 

I did not have the chutzpah to submit my own written question, but many did, and the interviewer cleverly interlaced his chat with some of these. Inevitably, one question referred to Ms Wroe’s own obituary. Who would she like to compile it, and what would her wishes be for what should be included?

 

Ms Wroe’s answer intrigued me, partly because cancer has led me to random thoughts about my own obituary from time to time. She did not have strong opinions about an obituarist, and even seemed rather disengaged about its contents. She said many times that she valued experience over record and would be happy to let others reach their conclusions about herself, without too much remote curation from her. What she did say was that she hoped any obituary would be funny and would capture her own sense of humour and quirkiness. This felt entirely consistent with how she writes the obituaries of her subjects, full of wit and quirky anecdotes.

 

I spend less time nowadays pondering my own obituary, because I think I am less concerned about influencing how people might remember me than about how I can perhaps help them to enjoy fulfilling lives after I am gone. But the interview did lead me to wonder which quirks and anecdotes might shed a revealing light on me.

 

Two anecdotes come to mind, coincidentally both certainly from the year 1968, when I was seven turning eight and our family moved from Folkestone to Portsmouth. The first event must have been around April, when I accompanied by mum to an interview as part of an application to a particular school on Hayling Island, where would be living for a short time. The teacher addressed most questions to mum and had just asked if I had started any French yet. Then he suddenly turned to me and asked how much seven times eight was. Quick as a flash, I replied that it was cinquante six, to the general astonishment of everyone in the room. I recall the incident in uncanny detail; I was not trying to show off (for a change), but only thought that he was trying to verify my French credentials rather than some trivial arithmetic.

 

The second anecdote probably occurred around October, a few weeks into my career in the first year of another school, Portsmouth Grammar junior. One morning, class was interrupted by some sirens, and we were all ushered into the gym for some time while various teachers mumbled in worried tones. We took to gossip and managed to establish that a boy I had not encountered from another class, named Moon (Korean?), had suddenly fallen very sick. It transpired that he had turned a shade of blue and that the ambulance had arrived too late to enable medics to resuscitate the poor kid. The teachers were in shock and probably did not feel comfortable restarting classes and there was a general air of paralysis in the packed gym. Then quietly, from the back of the room, came the voice of young Bobby. Wow, said he, that only happens once in a blue moon. He was, of course, royally admonished for this extraordinary display of juvenile wit. I still wonder if that was the best original joke I ever concocted.

 

One possible way my disease progresses might involve something like dementia, and indeed I do sometimes struggle with names these days. Who were the coaches of Chelsea between Conte and Pochettino? I have no idea but think back to 1968 and I can recall much more than those incidents. There was the trip when the car broke down outside Eastbourne, mum’s racist reaction to the black power salute in Mexico City, the beginning and the end of horse riding, golf with two clubs on the nine-hole course and accompanying dad on the full course, and my only perfect childlike summer on Hayling Island, including my first ever crush on a girl next door names Caroline Torrance.

 

Ann Wroe will, of course, never compose an obituary of me, but, if she did, those two anecdotes could lead the opening paragraph, and a third one might follow from the next year, when I brought the house down at a school revue with an improvised slapstick routine involving lots of shaving cream. Put the three together and you might have all you need to know about quirky me, from the desire for a stage, the edgy wit bordering inappropriateness, the prodigal sums, and the later propensity to compose and perform tribute songs at cabarets and parties.

 

She might allude in passing to how I was probably most proud about the long list of people who declared me to be their best-ever boss. She would surely include a lot of less flattering references too, but Saint Ann would struggle to make much poetry about any of that. 1968, she could work with.       

Second Chancers

 As my cancer journey seems set to enter yet another new phase, I have become fascinated by the idea of a second chance at life. I try to be careful not to leap too far into optimism, but for sure each time I see the oncologist he sounds more and more positive, so perhaps I could be lucky enough to enjoy significantly more time on this planet before the cancer returns. A year ago, we were unwilling to plan more than a week or two in advance, but now we seem comfortable thinking ahead a whole year or even longer. Does that make me a cancer survivor, or like somebody who has recovered from a near death experience? Probably not yet, and maybe not ever, but I have found it an interesting concept to explore.

 

I have but one more chemotherapy cycle to endure in this phase of treatment, in the middle of March. Then an MRI early in April will be followed by another appointment with the oncologist. He tells me that if all remains clear then treatment will not just taper, it will essentially stop. We would move to monitoring only, still with MRI’s but at a lower frequency, and with no special medication. Being able to say goodbye to nausea, fatigue and loss of appetite, not to mention regular lab trips, would certainly warrant a celebration, and was beyond my wildest dreams not so long ago.

 

I had assumed that the period after treatment stopped might be especially dangerous. Once we stopped zapping at the cancer remnants, it felt like giving it an open invitation to return with a vengeance. But the oncologist told us that this was not really the case. Of course, I will always run heightened risks compared with somebody who has never had a glioma, but these risks are not as high as I might think and not especially high in the period after the end of treatment.

 

So, once I felt better after last week’s chemo, I started researching topics life cancer and near-death survivors. From the beginning I have been curious about how cancer may have changed me, partly to give me an opportunity to understand and perhaps remedy any unconscious imposition my behaviour may be imposing on loved ones. Reading a few articles and short research papers, there do indeed seem to be some common themes for how people change, and I find that a lot of these resonate with my own feelings.

 

What has become a seminal paper about second chancers identified nine values or attitudes that appeared significantly more prevalent among the survivor group than the general population, based on a detailed questionnaire completed by many study participants. The second chancers declared a greater appreciation for life, and a higher level of self-acceptance. They felt that they demonstrated a greater level of concern for others but less interest in worldly achievement for themselves, and showed a higher level of engagement of planetary and social affairs. They followed a life quest or search for purpose more intensely, and demonstrated higher levels of both spirituality and religiosity. Finally the second chancer group showed what the study termed a higher appreciation of death, which I took to mean that they were prepared to contemplate death rather than demonstrate avoidance of the topic, and that they may have reached a level of acceptance and peace about its inevitability and certain randomness about when it might occur.

 

I found this list fascinating, and it led me down various rabbit holes. The first was to attempt some sort of self-assessment. Lo and behold, I think that I would fit the second chancer profile quite closely overall, and more closely than I would have before my cancer diagnosis. I think I have learned to live more in the present, to appreciate life and its awesomeness and to accept my own fate, trivial in the wider picture but still powerful. I think I am marginally more concerned for others than previously, even if kindness remains a challenge for me. I feel I already had some maturity of opinion when it comes to spiritual and religious matters, and these positions may have deepened somewhat. Appreciation of death certainly fits the new me very well. Worldly achievement has not mattered a lot to me for some time now. I do find myself searching for purpose a bit more than previously. The only one from the list why I feel myself moving in the opposite direction is my engagement in wider society, which I something I consciously try to disengage from now, especially living in the USA in 2024.

 

If I am indeed a good fit for the second chancer profile, what does this imply? I cannot really even claim to be second chancer yet, so soon after diagnosis. But perhaps the fit implies that I have made good emotional progress in accepting my situation and making the best of it. That emotional analysis we were sucked into at the start may have worked wonders after all, and this sort of self-analysis might be helping too. I have certainly been lucky in my wider life situation, especially the existence of strong relationships in my life.

 

I do sense that most of the attitudes on the second chancer list are healthy ones. That led me to second study, which examined how this same list of attributes changed over time. If this list characterises second chancers after ten years, does it still hold true after twenty? The answer from the second study was a resounding yes. Eight of the nine descriptions still hold, equally strongly. The only exception is the engagement in societal causes, which seems to diminish over time, compared with a control group. I noted smugly how this was the one attribute that did not apply to me, at least in my self-assessment. Does that make me, a second chance rookie, more typical of a twenty-year veteran survivor than a ten-year one? That seems to be the case. It probably means nothing at all, but I can’t think of any interpretation that would be anything but positive.

 

Does fitting the survivor profile make longer survival more likely? That is a complex statistical question, but it does feel possible. If it is true, does it make the profile a valid goal for therapy, whether self-therapy or the professional kind? And if so, the value could accrue to anyone, so why wait for a near-death experience? Again, that feels possible, even if some of the attributes feel like outputs rather than inputs, and therefore not things we can work on. As an example of this, it seems to be accepted that maintaining a positive attitude helps one face cancer, but there is no point in telling somebody to have a positive attitude, since that attitude is a result of many inputs, several of which we cannot control. Telling me to have a positive attitude is about as helpful as telling me to sing without vibrato – I can acknowledge the goals but lack the tools to achieve them.

My last rabbit hole was to compare the theory with my own anecdotal evidence. It has surprised me how many of the people who have reached out to me and piqued my interest since my diagnosis are second chancers themselves or are very close to one. I hear many personal stories nowadays. Some I follow with only a shallow interest, such as the ubiquitous tales of grannies who smoked like chimneys but lived to ripe old ages, and the tales that claim miracles or divine intervention. But I feel privileged to have become privy to some of the other stories, and I have frequently been moved by them. And the purveyors of such stories do generally seem to fit the survivor profile from the studies.

 

That leads me to one more tentative but optimistic conclusion. Survivors, and others sharing the second chancer profile, do seem to be interesting people, people who can make my own life richer. If I manage to graduate out of the rookie class, I can only assume that I am likely to come across more such people and more of their interesting revelations. That is yet one more reason to celebrate.  

A Fishy Take on Morbidity

 I find myself rather short of inspiration this morning. I realised I have not posted on this blog for a while so thought it was time to put something out there. After all, I have started experiencing people equating silence with probable death or incapacity. I met somebody in the street the other day. We were chatting away in a rather strained manner when after a couple of minutes she paused before rather ruefully sharing “you know, I thought you were dead”. I laughed and succeeded in removing any embarrassment, because I could fully understand her train of thought. She had no doubt seen my name on a prayer list and heard about my cancer somehow, but then heard nothing else for some months afterwards.

 

It is not unnatural to draw a morbid conclusion. I expect there are many others wandering the streets ready to be surprised in the same way. So at least I owe some regularity of posting for those that dip into my blog. I suppose it is a bit like climbing onto the roof of our apartment building once per month and shouting “I’m still here!”

 

I find it to be a good thing to be running out of inspiration for writing about a cancer journey, because it shows that the journey must be in a somewhat monotonous phase. In this situation no news is certainly good news. My health is rather stable. I notice that fewer people treat me like an invalid these days. My wife does not try to stop me doing the chores anymore, and even forgets sometimes to remind me to send her frequent “still alive” updates when I am moving about. At one point last year I shared with my therapist that the context of cancer invaded “every waking thought”, and at the time that felt accurate. It can only be good that some of my thoughts are now liberated from that context.

 

Part of that liberation is to find the motivation top tackle longer term projects. A good example is learning Portuguese. Ever since we have had plans to live there I have had a goal of learning the language, and a few months before my diagnosis I found an excellent website and started devoting a few hours per week to study. In October 2022 that habit stopped with a thud. Why work on such a tough project when I wasn’t going to live to obtain any reward for my effort? But after nine months or so I found myself drawn back to the website, and now I am back at full speed. Perhaps I will not get much opportunity to hone my new skill in Portugal itself, but perhaps I will. The idea no longer seems so futile.

 

So it is refreshing to notice that “every waking thought” no longer seems to apply. But it would be dishonest to claim that I am going about my life as free as a bird, even while I am feeling well. I am still prone to weird outbursts of tearfulness, though these do come and go, and their causes vary between fear, awe and thankfulness. I also find myself prone to cancer related musing, often while lying in bed.

 

Inevitably, much of this musing is about the two big questions that I understand my oncologists to be reluctant to speculate about. “How long do I have?” and “How is it likely to develop?” are frequently in my head. I know there is no good answer to either question, and I generally succeed in not asking them, and also not to research them on google either. But that is not enough to stop my mind from going to those places.

 

I carry two statistics around in my head. One is that the median survival time after a glioma diagnosis is between twelve and eighteen months. The other is that the survival rate after five years is less than ten percent. I am pretty sure that these are both accurate and relevant. Sometimes I share them with people who make the opposite mistake to those who think I must be dead already. These well-meaning people speculate that I am fully cured or soon will be, and sometimes I can’t help myself from correcting them.

 

I am now quite close to powering through the benchmark in my first statistic, it being sixteen months since diagnosis. One musing that has bedevilled me lately is how the life expectancy changes over time. Having got to eighteen months, am I now especially likely to keel over at a moment’s notice? Or is my life expectancy now another twelve to eighteen months from here? Or perhaps even longer?

 

Of course it is really a dumb question, since every case really is different. I won’t annoy my oncologist by asking him to speculate. There are a million factors in play. The initial median obscures a host of factors, and any renewed estimate would as well. How am I feeling? How is the rest of my health, including my mental health? Did I ever smoke? Is my heart in good shape? How effective is the care I receive at home? Will the infection reappear? Are the other symptoms merely annoying side effects, or might one become life threatening?

 

Despite all this, I could not stop myself with coming up with a theory. My hypothesis is that, so long as I feel as well as I did at the time of diagnosis, my life expectancy is probably still about twelve to eighteen months. If I still feel this well twelve months from now, I can hope for another twelve to eighteen months after that. And so on.

 

Ever the mathematician, this model has aspects related to a distribution called Poisson, named after a fishy Frenchman. We learned about Poisson distributions at school. They are quite elegant and good for problem solving and embedding some calculus concepts.

 

The example my teachers at school used to explain Poisson was waiting for a bus or a subway. It only works in a busy city where at busy times the published timetable is rather meaningless, and so the busses (buses?) turn up at rather random intervals from each other. I experience this while waiting for the Q60 bus or E or F subway trains in the evening. No matter how long you have waited already, the expected time until a bus arrives remains the same, always starting from now. If the average waiting time upon arrival at the stop was four minutes, you can still expect to wait four more minutes on average fifteen minutes later, whether no bus or six busses have passed in the interim. That is one of many interesting features of a Poisson distribution.

 

Might Monsieur Poisson have something to say about my current life expectancy (and by the way, everybody else’s too)? I suspect that he might. The features of a developing cancer will indeed follow some sort of independent pattern, like a phalanx of busses. I can even incorporate my second statistic, since a Poisson distribution with a mean (or is it median? I think it might be both) of fifteen months would indeed offer a probability of something less than ten percent of surviving five years or longer. But I can reset that five year probability now as well, starting from today. And I can again next month, so long as nothing else in my condition has changed.

 

I suppose this all rather pointless, even if my theory has some validity. But I share it as an example of the sort of musing that goes through the head of somebody with a condition like mine, perhaps while waiting for a bus. It is rather good for morale to be able to continually reset the mental clock, and to give some justification to such thoughts via reference to a fishy Frenchman.

 

And, pointless and even dumb as it is, such musings are probably rather more meaningful than clambering onto the roof to shout that I am not yet dead. Or cured.    

Measuring Progress

 I have a trick I have used for some time to measure whether I am making progress at becoming a better singer. I started to use it because developing competence in singing can be a depressing business. You are always so far from your ultimate goal, and you never seem to be moving forward, partly because the goal itself seems to be moving further away.

 

Other disciplines are similar – I also noticed it with golf. You start with a self-assessment which might be five out of ten and set yourself a target of reaching eight out of ten. But by the time you are prepared to accept that you have moved forward to six or even seven on the original scale, it becomes clear that there is so much that you now know about what you cannot do that your original scale was wrong and the first assessment should have been five out of twenty. Such it continues: progress is halting, and even as you make progress the goal is moving further and further away.

 

My trick in this situation was to give myself a fair indicator of progress. Most of the time I was struggling with new pieces, testing myself on tougher material and noticing how far I was from success. Every so often I would break the cycle by going back to try to sing a piece from a year or more ago that I had struggled with and reached a certain level but then discarded. I invariably found that, a year later, I could just pick up the former piece and sing it far better than I ever could before. This was proof that I must have improved during the intervening year. I just needed a way of noticing it and proving it to myself.

 

This trick works. I have used it repeatedly, most recently when starting to jam again with a friend. I have recommended it to other singing students and tried it with other disciplines too. It is great for morale and gives more motivation to continue to struggle up that long hill.

 

Recently I have started to use my trick in a completely different context, that of my cancer. With cancer, just like singing in some ways, progress is usually slow and easy to miss. You go forward in tiny steps but backwards with huge leaps. It is good for morale to find ways of measuring those tiny forward steps in ways that I can believe myself. Morale is important, especially when facing something where the long-term prospects are not good.

 

Luckily, I have had many opportunities to use my trick with respect to my cancer. Yesterday I went swimming at our local pool, after my neurosurgeon’s team finally agreed that it was safe once again to do so. I do enjoy swimming, and I always feel better afterwards, especially if I reward myself with a few minutes in the steam room. But yesterday there was another bonus. I was able to compare my swimming experience with the former time I had resumed swimming, back in April or May of last year, also after recovery from an operation or other treatment.

 

Yesterday I found myself able to swim sixteen lengths with relative ease. Furthermore, the walk home afterwards was easy too, despite the rather icy conditions. Using my trick, I thought back to last spring. The first swim then was only of eight or ten lengths, with some difficulty getting in and out of the pool and rests after every length. Even more telling, it was a real struggle to hike up the hill on the way home. The conclusion was inescapable and highly encouraging. Even though I had been deprived of the exercise for many weeks, I must be more fit now than I was last spring. It wasn’t just somebody trying to convince me to make me feel better, this was measurable proof.

 

Then another example presented itself. A year ago, a project started that involved teaching some songs to a class of kids on Monday afternoons. I was only a bit part teacher, but even so it was a real stretch for me at the time. I remember having something akin to a panic attack during the first session, which I attributed to having such a noisy and crowded environment around me while I was still suffering from double vision. Now, a year later, a similar class is being prepared, and I find myself quite comfortable in taking on more of a leading role. Again, I conclude this as evidence that I really must have progressed a long way from the dark days of January 2023. Those days did not seem all that dark to me at the time, but for sure the prospects now must seem brighter.

 

Another example occurs to me while reflecting on emotions during our two trips to Europe. Last spring it almost felt like a miracle that we were able to make it to Europe and back, something of a final blessing conferred on me. I spent a lot of the trip close to tears and in a mode of farewell rather than anything forward looking. There was a marked contrast on the trip that has just concluded. This trip was about relaxation, but also planning for the future, a future we both very much believe can come to pass. The only time my emotions got the better of me was on the final morning at Faro airport, when concerns came flooding back about a foreshortened future. We were still sanguine about what will eventually lie ahead, but now with a context of progress and the real possibility of future joy to anticipate if we are fortunate.

 

My last example is short. Yesterday I also paid my six-monthly trip to the dentist for cleaning and checkup. As I left the practice, I found myself saying to the hygienist that I would see her again in six months. Then I caught myself. Six months? Will I still be around in six months? Well, perhaps not. And perhaps the next hygienist I see will be in Portugal. But the realised that the careless farewell salutation was significant. It was proof that I am able to plan six months in advance, without cancer dominating the thought. This is surely a sign of mental progress. My prospects have not changed very much, but my mental attitude to those prospects has changed radically.

 

I recommend the habit of finding ways to prove progress, in whatever field. The setbacks are obvious when they occur. The recoveries can be less visible and easy to overlook. Setbacks are big, recoveries small. As a former boss put it in another context, trust arrives on foot but departs in a Ferrari. It is important to measure the progress, so that we can really believe it is happening and is not merely an attempt to build morale. For measures of progress are proof of progress, and the morale engendered is much more powerful. And for now I have all the proof I could ever wish for.