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.       

Accepting Hope

 Acceptance was one of my big themes in 2023. It lay near the end of an emotional path I tried to tread as I sought to find a helpful response to my cancer diagnosis. I attempted to discard anger and resentment, acknowledge pain and grief, then move into thankfulness that would lead me towards acceptance and eventually peace. I can trace the steps of this journey quite closely, each stage marked by events or feelings. Acceptance grew during the period of advent, helped by some gospel readings of that season. Now at the start of a new year I did not really expect to witness, I find myself largely at peace, and I realise that it is time to couple the acceptance of my likely early demise with a different form of acceptance, that of hope.

 

After a lovely final week of 2023 in the company of friends and family in Holland, my wife and I landed in Portugal in the waning hours of the year. As usual, my Happy Place yielded its magical powers and I immediately felt well and relaxed. It is an ideal place and time to reflect on the year that has just finished and the year or years that lie ahead.

 

Prominent in the reflections was a realisation of how my time horizon has changed over the last twelve months. 2023 opened shortly after a major operation and with what seemed rather dim prospects. As warned by the surgeon, the operation led to a marked immediate decline in my peripheral vision, accompanied by some hallucinations and stubborn double vision. I was rather disorientated, and it was not encouraging to learn that the most positive likely outcome included weeks of radiation therapy and months of nausea-inducing chemotherapy. I could not help but draw stark conclusions when close family members thought it wise to visit New York in the dead of winter. At least I was able to convince the doctors to take me off steroids, allowing me to remove some of the frenzy from my emotions and death planning. This was acceptance of a kind, but hardly peaceful.

 

Then, somehow, the radiation period passed without setback and I started to witness cheery oncologist faces when they looked at my MRI scans. I alighted on the concept of Bonus Time, tentatively allowing myself and my wife to formulate plans for a few months rather than only days or weeks. The trip to Europe transitioned from an unlikely dream to a goal and then to a reality. Thankfulness was easy by now, and acceptance started growing; I noticed that every waking thought was no longer dominated by the context of cancer. My wife and I became ever closer as our emotional journeys interlocked. September felt like the start of a regular new cycle, not merely a coda of uncertain length but possibly more than a few closing chords.

 

A second trip to Europe came into view as a possibility, despite the worries caused by the infection during October and the other annoying chemotherapy side effects. A month free from chemotherapy had the welcome effect of restoring my appetite and greatly reducing my nausea. We made it into and through advent and then to Europe. We are not in miracle territory yet, but we are rapidly approaching the median survival time and surely few have the opportunity that I still enjoy of living a largely uninhibited life for so long with the disease.

 

Our first day in Portugal was the first of the year. Supermarkets were closed but some restaurants seemed to be open, so we headed to a resort area where we could walk and then eat. Walking together is part of the magic formula that has helped us to face our futures as a strong team, and it came as no surprise when that first walk yielded a wonderfully fruitful conversation.

 

Living together in Portugal has been a long-held dream for us, one that my wife has slowly come around to sharing fully, despite the fact that it holds fears for her as well as the prospect of joy. The date to embark on this dream drifted backwards but still steadily came closer, and the dream took firmer shape as we made plans for our life here and specific intentions, such as how to modify our villa. Then all plans, and the entire dream, were shelved abruptly upon my diagnosis; indeed that shelving was the first substantial thing we agreed upon on the very day that the bad news was confirmed.

 

As the prognosis has gradually become more hopeful, the dream has re-emerged into our shared thinking. On the long walk of the first of January, it took it several more steps forward, creating plans and schedules that feel very real indeed. Talking about the villa, we came up with a useful concept of three future time periods, which we called A, B and C. That helped bring everything into focus.

 

A is the time we can spend together living in Portugal while I am still in relatively good health. B is when my health worsens so that we have to restrict our lives somewhat, perhaps through stays in hospital or with much more everyday care or bound to a wheelchair or even bed. C will be when I have gone and my wife must live a future alone.

 

Unless we really do reach miracle territory, C will come to pass eventually. Perhaps we will never make it to Portugal at all before C. The period of B might be very short or rather long, but it is likely that there will be a B. We could be blessed with a long A or no A at all.

 

This simple model helped us to make things feel real during our walk and to plan accordingly. What should we do to the villa? Well, most immediate is A because that comes first, so we should make the improvements that are most important to us as a couple. But we must keep half an eye on B, planning for A in such a way that the transition to B will be as simple as possible. We have already made the most important choices here, by deciding to live on the ground floor and prioritising level and wide passageways and our bathroom. A quarter of an eye must also be reserved for C, so that the second transition will also be feasible and attractive to my wife.

 

The discussion has already paid dividends, because we have become more active than I anticipated initiating concrete projects. I can expect a few wobbles along the way from my wife, because she is the one making the longer commitment and sacrificing more options. Giving up work, moving continents and facing the likely loss a life partner are all daunting. Talking it through and dividing the challenges in to steps can only help.

 

Greater acceptance and preparation for C is valuable, and will drive us to action, hopefully action that will prove smart. We had previously rather avoided the topic of B, because that is scary for both of us, but facing its prospect head on and being somewhat prepared will surely help us both.

 

But for me, and I think also for my wife, the most valuable insight to come from our chat was the joyful acceptance of the possibility of A. I did not realise that we had been evading that aspect as well. Perhaps that was partly out of superstition or fear of being selfish, but now I believe the primary cause was insufficient acceptance of hope. I could face C and even B, but A was evaded because I did not fully accept its possibility. I sense the same feelings in my wife. We have already experienced benefits during the past wonderful week shared together in Portugal. For the first time, we are living A and accepting it fully. Wow, the magic in this place is simply awesome.

Nun Better

 I have often shared how I think the best thing that happened to us since we came to the USA was the opportunity to discover the Queen of Peace nursing home in Queens Village. A nun from the home visited our parish back in 2015 and gave what may have been the least coherent but at the same time the most powerful speech I ever heard. My wife was entranced and we started volunteering at the home soon afterwards.

 

The home is run by resident nuns and is co-located with a novitiate. There are about a hundred elderly lay residents, with the expectation that this will be their final home on earth. Some survive only a few months after arrival while others soldier on for ten years or more. The intensity of care increases as residents move from the fourth to the second and ultimately the third floor.

 

Before the pandemic there was a whole army of volunteers visiting the home, helping the nuns and employed staff in a variety of ways. Our initial task was to help to serve the evening meal on a Saturday evening. My wife and I were assigned to the second floor, while the kids served on the third. We quickly realised that the staff could quite easily serve the meal without us, and our real function was to befriend the residents, giving them somebody else to pass time with. Over the years we have struck up lasting friendships with many residents, and many of them look forward to our visits and truly value our company. It can help them to stay healthy for longer and to find additional peace in what remains of their lives. In turn that love rebounds on us, filling us with joy and companionship. We always return from the home in a great mood.

 

After a year or two I expanded my service to include visiting to cantor a mass for them one weekday, and then to be a driver for residents with medical appointments around Long Island. Visits stopped abruptly when the pandemic struck and residents needed to be isolated from each other and inessential outsiders. A nun confided in me that she thought the pandemic aged residents on average by about five years, though mercifully there were few Covid deaths there. Cautiously, life has been returning to normal during 2023, and we are proud to be welcomed as part of a much smaller (so far) cadre of volunteers. Now we serve Sunday dinner, and I have just restarted going back there to sing occasionally too. Sadly, driving is off limits now as my condition means that I can no longer drive.

 

Over the years the home has offered us some of the funniest moments we can recall. My wife still tells the story of our very first visit, when one resident had the cheek to ask me what floor I resided on. The sad afternoon when I shared the news of my tumour with the residents was punctuated by a very deaf lady at one table replying to “I have a brain tumour” with a cheerful “Is it raining?” One centurion introduced the state of her bowels into virtually every sentence. Another insisted repeatedly that in earlier years he had been saved from a shark attack by a passing dolphin taking a ride on the back of a whale.

 

A large part of the mission of the order of nuns at the home is service. At Queen of Peace, that translates into helping the residents (including several retired nuns) to be as contented as possible during their final years and to prepare for a peaceful death. They perform this job magnificently. We have seen many miracles there. A common pattern is for a resident to be quite disturbed when they first come to the home but to become noticeably more at ease the longer they live there.

 

With my diagnosis, several of my thoughts are about being ready for death as well. I have listened carefully to the gospels of the last few weeks, seeking inspiration, not necessarily divine. I have never before thought of the advent message so clearly in this way, an d I have found that It makes more sense to me using the message as being ready to die in peace rather than anything concerning second comings or final judgements.

 

So my mind is on this morbid readiness, and the nuns I am privileged to meet every week are paragons of carers of people at the end of life, so surely there are some useful points to learn here. They might help me or my carers as the illness progresses. In fact they might help anybody, as we never know when illness may strike or when an elderly relative may require such care.

 

The primary way the nuns do their work is by example. You don’t hear long sermons from any of them. Their faith is clear to see, but they don’t ram it down anyone’s throat. Instead, they demonstrate lives of simplicity, humility, prayer, companionship, acceptance, generosity, kindness, compassion, and self-discipline. They each have their foibles, and no doubt there are disputes behind the scenes. They might not all like each other and certainly some of the residents are hard to like, but loving is more powerful than liking.

 

The toughest time for many residents is when they first arrive at the home. That stage of life can seem like a series of defeats, and moving into assisted living may be one of the biggest defeats of all. When we first meet a resident, they are often angry and rather disorientated. But the nuns make sure they have companionship and care, and soon friendships are struck and most come to embrace their new lives. This is achieved via example, sprinkled with a bit of smart cunning.

 

Then comes the time when life ebbs away. The important work has already been done, and most residents have some peace before the final days. But the nuns organise a 24 hour vigil to ensure a resident is never alone in their last days, and you can almost touch the love in the room. Occasionally we have had the privilege to be a part of that magic: one of my proudest achievements was to sing the favourite spiritual hymn to a dying priest in his last hours and to sense his appreciation.

 

The nuns don’t go around talking about death, but they don’t run away from it either. Their demeanour is designed to help the residents understand that this can be a peaceful final transition, whatever they believe. When a resident dies, there is respect and solemnity, but usually little wailing.

 

It is harder for the nuns to be able to provide much help for the families and carers of the residents because they usually have less chance to get to know these people deeply enough. But, for those family members and carers who can find time to visit, the same example is offered to them. It is surely a great comfort to know that one you have cared for and loved can find a peaceful end in the company of abundant love.

 

I am so fortunate to have Queen of Peace and its nuns and residents as role models. That list of seems like a pretty good set of attributes to aspire to. An interesting one is acceptance, because at first glance it seems in conflict with something else that people often urge me to do; that is fight. I don’t see any conflict. Of course we should fight our illnesses, not in a military or angry way, but with some steel and persistence and attempts to follow healthy practices and trust in medicine. Acceptance is the other side of the same coin. We are all unique but none of us are so unique as to be immune. Our best bet is to humbly accept what the fates have in store for us, and to find peace with that fate.

 

Thank you sisters, you are my greatest inspiration. I hope I can live, and die, showing something approaching the wonderful values you espouse. If I can, the primary beneficiary will be myself.