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.    

Tears for Fears

 I have never been a great one for crying. I suppose I would wail as a small child as much as any other kid. But then I went to a UK boys only private school, where part of the implicit training is to learn not to show emotion or to blub. This was enforced by one’s peers, for blubbers were soon destined to be victims of bullying. I became as proficient as everyone else when it came to hiding feelings, and to literally hiding when the urge for tears was strong. That trait has not helped my quest to be a good husband or father.

 

As an adult, this training meant that I did not cry often, even in private, and I suspect it also acted as an inhibitor for being open with emotions, even to myself. I remember well the earlier crises in my life, notably the time when I abruptly departed from my first marriage and found myself alone in disgusting B&B’s. I would cry a little in those moments, and I even selected one or two mournful CD’s to play when I wanted to bring tears on, but the trickle of tears never really grew into a flood, despite all the shame and guilt.

 

If you want to induce tears in me, the best way is to take me to a darkened theatre or cinema and have me watch something sentimental. Often I will lose control of emotions, and when the lights go up and everybody is streaming out, I’ll keep my head down to avoid making my tears too public. I guess this is quite common, even among men, indeed even among repressed men. My wife is probably more typical in being driven to tears very easily by a sentimental show. She will even quietly head to the kitchen if she senses a violent or poignant scene is about to show.

 

The last twelve months of living with cancer have been different. I have found myself vulnerable to gushing tears, something that is new for me. It is hard to discern any pattern, but there are situations and places and times when I am more prone to an outburst. It also swings in cycles – some months seem to go by with nary a tear, and then the next month I find I am crying nearly every day. I am no longer so concerned with suppressing or even with hiding my emotions. But I am interested in what might be the causes of these variable patterns.

 

MSK were kind enough to refer me to a therapist, and my insurance has been kind enough to pay. I feel a bit of a fraud, because most of the time I feel quite emotionally stable. Most of our sessions seem to end with the therapist laughing and suggesting that I don’t need her very much. By now we have reduced our sessions to once a quarter, continuing in case I enter a phase when my need is greater.

 

One useful thing the therapist did for me was to encourage me to start an emotions tracker. I followed this quite religiously for the first three months or so. It is interesting re-reading the entries today. It is encouraging to note how much more stable and accepting I am now compared with the earlier phases of the illness. And there are a few clues in the tracker about what might cause me to burst into tears. If I am going to try to answer the “why” question, I suppose it would help to first analyse the “when”.

 

When do these tearful outbursts come? Overall, the trend is that they come less often. Nowadays a full month can go by with few or even no tears, but at first there were tears every week. Within that trend, there are peaks and troughs. I cry more often when not feeling well physically, or during the lead up to a procedure involving anaesthetic. There were also more tears before and during our trip to Europe in the summer, and when I was separated from my wife for a week while singing in Massachusetts. The tears most often arrive early in the morning, and when I am alone and quiet and prone to pondering. Most tears come alone, an exception being when I am parting from precious others – those goodbyes are the toughest things to cope with.

 

If that describes when I become tearful, it must help understand why. The reducing overall trend must signify a growing acceptance of my situation, together with a tentative growth of hope that the cancer might stay suppressed for an extended period. It is no surprise that the worst week for tears was the very first week I spent in hospital, receiving a torrent of bad news in a hectic environment, while also observing the anguish of my wife and family. What were these tears about? Well, initially it was grief for a loss of a long, anticipated, joyful future. Over time that grief has reduced, as I have been able to shift my focus towards celebrating a joyful present and nostalgia for a joyful past. 

 

Tears in the lead up to a procedure are also easy to explain. It is the same with every procedure, but I have been less tearful with each successive operation. One reason is that I am no longer on steroids. Steroids magnify every emotion; I was living an amped-up life at this time last year.

 

Procedures are risky moments. No matter what the surgeon says, every operation carries catastrophic risk, and the patient is sure to feel this intensely. I suspect the main cause for tearfulness prior to an operation must be fear.

 

I am fortunate in not being fearful of death itself. But I am fearful of a future so diminished as to be tough to bear for myself or for carers. The possibility of a prolonged life of constant pain, bodily malfunction or shifts in mind causing constant anguish, fill me with fear. I suppose there is not much I can do about it, beyond reminding my loved ones not to keep life-support machines operational on my account.

 

Then there is another fear, that of not being ready. The gospels of the last few weeks have been helpful here, even for somebody with little confidence in a second coming or pearly gates or final judgement. Our experience at the old folks home has also been invaluable, observing others prepare to die and their carers helping them with love.

 

Being ready offers peace in any situation, and being ready for death is peaceful too, even in a more extreme situation. In the days before my first biopsy, fuelled by steroids, I spent every hour trying to make myself ready for death. My mum or grandma might have articulated that by making sure she always wore clean knickers in case an ambulance driver or passer-by would spot dirty ones, but I was thinking about legacy. From writing hurried last wishes to sharing bank passwords and expressing love, I was trying to do what I could to ensure that those that I love have the best possible chance of thriving after I am gone. The pace was frenzied so long as I was on steroids, and has slowed since, but I still have one eye on being ready. I am thrilled to observe my wife preparing herself too. There will be tears, but she will be fine; they all will.

 

We should always think that way, even if not in immediate jeopardy, because a sense of readiness is a wonderful gift. We should strive to end every engagement on a loving note, and to mend any broken relationships as a priority. This is a gift to those we love who survive us. It is also a gift to ourselves, because peace only becomes more valuable as we approach the end. Nowadays I have little remaining fear of not being ready, and that is an enormous comfort.

 

I wonder if there is another cause for my tearful outbursts, unrelated to grief or fear. There is something I might describe as awe, when I wake up and quietly ponder how my life has been transformed. That can be sad, especially while every waking thought came with a strong context of cancer, but it can also be awesome. I have had a privileged time on earth, and perhaps have more time to look forward to. I have moments of awe when I get a chance to sing a favourite anthem with friends, perhaps more so if my mind is wondering if it will be the last time. I have joyful memories, I have a little pride, and I have love.

 

I suspect that sort of thought is often what presages tearful outbursts. Is that thankfulness, or humility, or care for loved ones? It may be a mixture of all those feelings and some others. In any case, when the tears flow, they are profoundly welcome.           

The Benefits of a Great Hobby

 I receive a lot of compliments about how I managing to stay positive and active during my cancer treatment. I am variously described as a trouper or an inspiration, and I suppose it makes me feel good. I am not sure how much of the praise is truly warranted. Is this a chicken and egg situation? Am I able to stay positive and active because I feel good physically? Or is the feeling good a consequence of staying positive and active?

 

No doubt the reality is a bit of both, but on balance I am on the side of the chicken on this one. I have been amazingly fortunate that my cancer symptoms have not been too debilitating, that my medical support has been excellent and that my treatments have generally been effective. That is the primary reason that most of the time I have been feeling fine, and that leaves an opportunity to live life close to its prior normal manner. Most cancer patients do not have that luxury, at least not for very long, and I certainly have no intention of crowing that the difference is my positive attitude. That certainly helps but is simply unattainable for many sufferers.

 

As so often, the biggest difference from attitude may come on the emotional side of the equation. Given some level of physical comfort, there is still a challenge to the emotions, that at times can be vast. In this sphere the egg might have an answer to the chicken. But even here, I am one of the lucky few to have had the possibility of keeping most of my emotions largely positive or at least not too dispiriting.

 

How is it that I have been so blessed so far? Again, I start with purely physical aspects that are largely beyond my control. I have been no health paragon through my life, though I suppose I did OK to avoid the blights of smoking and other addictions. Looking back, my smartest, or luckiest, move was to notice the minor symptom last summer and to do something about it. That led to the misery of diagnosis and treatment, but if I had not noticed or stayed quiet, the tumour would have been free to grow for longer and may well have become untreatable.

 

So, if this blog is to take the arrogant stance of offering advice to people without cancer, point number one is to look out for possible symptoms and, as they say in New York, if you see (or feel) something, say (or do) something. Hypochondria is not a great route to follow, but being aware that our bodies are fragile and looking out for early warnings is. Great plan.

 

Then I suppose point number two would be about avoiding a lifestyle that makes us prone to ill health. I am a poor role model for this one as a stranger to the gym and a sucker for sweet foods, but perhaps we don’t need to be exemplary, it is enough to avoid asking for trouble from drugs, tobacco, alcohol, obesity and the like.

 

Those obvious points are all I can think of about physical preparedness, but emotional preparedness is something else, and something that we generally have more influence over.

 

When we are young we all think we are immortal. That is probably a good thing; everything is a balance between risk and caution and if all of us favoured caution then there would be a lot less innovation in the world.

 

But negative health surprises can happy at any time, and become more likely as we get older, no matter how strong our physical preparedness. If indeed our attitude is important in determining how well we respond to such a challenge, then some emotional preparedness becomes a sound investment.

 

The most important way to be emotionally prepared for a health setback is to maintain our key relationships in as strong a state as possible. This starts with who we choose to live with. A life partnership always involves challenges, and that makes many of us cautious about commitment and sometimes to finding solutions when difficulties arise.

 

Such behaviour is not all that risky while we are young and healthy, and it can even be beneficial to build some experiences and derive key lessons from ditching or being ditched. But wow, does it help to have a. strong partnership once major health problems arise? A lot of trust and other relationship capital can make all the difference when it is really needed. Consider that next time you are tempted to strike out at your partner or moan about a widening waistline or some other triviality.

 

The same applies, albeit to a slightly lesser extent, with our children, siblings and other close family members. It is not necessary to live in each other’s pockets; we are all different and must find our own paths. But a bond of emotional support from an extended family can really help when the going gets tough.

 

Another opportunity for emotional preparedness comes from how we spend our free time developing hobbies. For about half of my life, my primary hobby was playing bridge, the card game. It helped me build a social network, challenge my competitive spirit and travel around the UK and Europe. It also became one half of the glue that bound my marriage together (our daughter formed the other half). In the end there was still not enough glue, but our shared hobby gave us more happy times than we would probably have been able to enjoy otherwise. My first concession when we separated was to give up bridge completely, so that she could retain her hobby without bumping into me all the time, which I judged would be emotionally important to her.

 

What followed after bridge? I rediscovered singing, something I had done in my youth and largely neglected since. Singing has turned out to have all of the same benefits that bridge had before, including providing some glue to my second marriage when we sing together and travel together for singing holidays.

 

Before diagnosis, I did not consider for a moment how fortunate a hobby singing would be once I became sick. I am so lucky that my cancer so far has allowed me to keep singing as fervently as before. If my greatest handicap is that sometimes the word or note on the left side of a new line of music seems to be absent, I can put up with that. Over the last nine days, I have enjoyed fourteen sessions of singing in ten different places, including three concerts, three other church services and even four pay checks. Few cancer patients can be as fortunate as that. And, going right back to the beginning and the claim that I may deserve compliments and even derive stronger health for my positive attitude, singing is no doubt the primary cause after my life partnership.

 

My luck is that I stumbled into a hobby which was not seriously inhibited by my cancer. And therein lies the last lesson I would like to share, one I followed myself purely by good fortune. As we reach middle age and the possibility of serious illness looms larger, we would be smart to think about our hobbies and perhaps to take up one or two that are more robust, and ideally which contain a social element. 

 

If I were a passionate skydiver, or explorer of exotic places, or even a builder of model aircraft, I would have had to largely give those things up, and the emotional acceptance of my disease would have been much more challenging. Graham the skydiver would have been consumed by his vertigo, the explorer by his nausea and the model builder by his loss of competence at close work. But Graham the singer can still perform, just about, and furthermore to retain an active social life and a close life partnership. He is grateful to have chosen that hobby. What will tyours be?