Deja Vu all over again

 For most of us, anniversaries are more often memorials of tough times than celebrations. My mother became a widow on March 16 1976 and worshipped that date for the thirty six years she lived for afterwards. I tried to remember to call her on that date every year, and she had a ritual of visiting the room in the Eastbourne crematorium where they keep a book of remembrance. It was nearest thing she ever came to spirituality.

 

Now my cancer journey is at its first anniversary, and I wonder if, depending on how long it will continue, certain dates will assume importance for my wife and me. This week certainly bears remarkable similarities to the start of the journey, since I am back in hospital.

 

It was today, 12^th October, last year that I had the appointment with the neuro-opthamologist, in which he identified the brain as the root cause of my peripheral vision issues and advised me to check into urgent care the following day to find out exactly what was going on. That trip to urgent care led quickly to a CT scan showing a mass, then a more conclusive MRI that night, and the first biopsy five days later, involving six nights in hospital in all.

 

That set off twelve months of trials, starting with steroid land, the second even less optimistic biopsy, the long period of inconclusive diagnosis, the third hospital visit just before Christmas for the major operation, then the intense radiation therapy followed by the seven rounds (so far) of oral chemo. I have been lucky, because the basic cancer has not developed at all and has even been supressed for now by all the treatments. I have had a few little setbacks, but have generally felt quite well and able to continue a pretty normal life, with only the minor inconvenience of not driving and the various bouts of nausea and fatigue to put up with.

 

Then this month has been a bit tougher. The last chemo round was a bit harder to tolerate, and one of the occasional side effects, itchiness and rashes, came up. I had pills and creams on hand to deal with that, but it did lead to unusual levels of fatigue, before a new problem emerged via a swelling near the site of the original incision. Initial antibiotics did not clear it up, so last Thursday I was requested by my oncology team to report once again at urgent care. That has led to another minor operation and seven nights so far back in hospital, making seventeen altogether in the calendar year.

 

Even though I am in a different hospital and being treated for different symptoms and issues, the similarities to that first six-night hospital stay have been uncanny. It is not an experience I would recommend.

 

The parallels start in the urgent care department. The first time I drove to Long Island and parked the car there and left my stuff in it, all rookie mistakes. This time I went by subway and remembered to bring lots to read and very little else. Both times, the urgent care environment resembled a crowded bus terminus, teeming with people but achieving very little at any pace. This time I sat in a waiting room for a full six hours, during which little was achieved beyond the insertion of an IV line and drawing of blood, and rudimentary interviews with many people who did not seem motivated to communicate with each other. At least this time after the six hours I was actually placed in a real bed in a real ward, contrasting with earlier experiences languishing in other waiting areas and corridors.

 

So we come to the ward experience, also full of parallels. The rooms were probably designed for single occupancy, but long ago subdivided as twins. The patient rooms are overloaded with equipment and the neighbour is always too close and usually seems to prefer permanent junk TV on full volume. But what else are they supposed to do, especially if they are doomed to remain in the same dismal place for weeks on end? On this visit I am now in my fourth room, an improvement on the eight (including corridors and waiting areas) of my first hospital stay. Even so, being moved around is always unpleasant.

 

The equipment is plentiful and sophisticated, but still somehow flawed. Despite all the buttons and options, I have yet to feel comfortable in bed for a single moment. The machine dispensing fluids into my IV often beeps, perhaps because I moved my elbow microscopically or perhaps because of a tiny bubble in the bag. I have learned the trick to stop the beeping, but sometimes that only offers relief for a minute or less. And my neighbour often has no such trick available.

 

There are long spells of boredom, but also many visitors, often during the night. Some visitors have a routine task to perform, some have the job of checking up on me, and some are the real decision makers, whose communication skills are decidedly mixed. Most staff are friendly enough and many are lovely, they have their own priorities and inevitably deprive their patients of peace.

 

Just like during my first stay in hospital, an initial burst of tests and an MRI led to the conclusion that I needed to stay for an operation, for which I had to wait for a space in the schedule to open up, aware that other cases would have higher priority. Then, in both cases, the operation experience showed up other features of the hospitals. There is some preparation on the ward, then a spell in the pre-op area, where not a lot happens. Then I am wheeled into an operating room, put to sleep, and the next thing I know I wake up in the post operation recovery unit, an oasis of calm. This time, as has happened at least once before, my post-op residence lasted through the night, until a new home was found for me back on a ward.

 

The day or two after an operation are the most physically discomforting, at least in my case where the operations have been to my head area. It takes many hours for the post-anaesthesia pain to even start to subside, but there are still machines and buttons and wires everywhere, plenty of visitors, and not much real news. Then today, two days later, comes the welcome turning point, with a lot less pain and the start of talk about recovery, getting home, and next steps.

 

There are other uncanny similarities. The food is remarkably good. The fellow patients cover the gamut of resignation, anger, pain, boredom and a sense of life ebbing away. The staff embody humanity in all its richness too. And the extreme hierarchy among the staff is plain to see, including power exuding from some uniforms and even the physical features of groups at different hierarchical levels.

 

As usual, the emotional journey is as taxing as the physical one, but here perhaps my enhanced experience has helped me. For sure during the first visit to hospital a year ago we were excessively fearful, frantically preparing for a possible sudden death and attempting goodbyes and its contingencies. Such thoughts were present again this time, and inexplicable floods of tears still emanate, especially early in the mornings, whether out of fear, dread, love, thankfulness or some combination. But together we have kept our emotions in check better this time. Thankfully, things seem to be trending in a positive direction, and that last phase unleashes the same flood of thankfulness.

 

Are there any lessons from all of this? Staying out of hospital must be one, but hardly a very practical one, because if we are sick then we need treatment to get better. Getting angry should be avoided if at all possible, but can be difficult when in pain and filled with fear. Enduring hospital without a loving partner must be horrible, and must also inhibit recovery. It is always right to maintain the balance of hope for the best and preparedness for the worst. And, most of all, it helps to feel thankful.

Re-entry

 The French have a word for this time of year; they call it la rentrée. For the long summer break, including the whole of August, everything revolves around les vacances. Schools are empty of course, but so are offices, and forget about trying to find anyone resembling a plumber to fix your drain. Then comes September, and normal life returns, and everybody has to find a way to respond to the sudden change of pace once again.

 

It is less extreme, but even New York has une rentrée. For many of us, the summer is a time to dread rather than embrace, because the humidity is unrelenting and the noise of air conditioners a constant nuisance, yet we are still expected to function. Now, in September, all my choirs have restarted and the routine of the week has resumed. Yet for us, this year, our rentrée has assumed an exaggerated significance. I did not expect to be embarking on this season in such good health; indeed it always felt that this might be the season when things started going downhill fast. Yet a chance remark by our oncologist last week has helped to create a very different atmosphere, one of unexpected optimism. Of course that is very welcome, but it has created its own challenges. Bring them on.

 

I can’t fully explain how it came into my head that this period might turn out to be a milestone of decline. When I first received a preliminary diagnosis last October, I still recall the words of the surgeon after he had breathed dreaded words including “aggressive” and “high grade”. “Sometimes we are looking at years, and sometimes months” certainly came across to me as a warning to prepare for an early demise. The hope offered by the discovery of “unusual features” never amounted to much, since they were obviously not so unusual as to warrant any sort of unusual treatment. I avoided Google, but still could not avoid discovering the statistics of an eighteen-month median life expectancy after diagnosis and a five year survival rate under 10%.

 

Then came the operation and a period my family still describe as a temporary insanity, backed up by a series of quickly arranged visits which told their own story about what family members expected. Even when the intense treatment seemed to have suppressed the cancer and the MRI reports started to lead to medical smiles, our hopes were still cautious ones, and it spoke volumes when the oncologist encouraged us to visit Europe but warned us to “have our affairs in good order”. All of this led to what I characterised as “bonus time”, a period to enjoy as something of a last hurrah.

 

I am not sure that very much has changed now, except in our heads. Finding myself still healthy at rentréetime, with its resumed choirs and other routines, and seamlessly passing the halfway mark in the chemotherapy, were perhaps surprising enough to reset some expectations. But my wife and I surely sat up and took notice when the oncologist reacted to the latest clean MRI scan by starting to wax lyrical about patients of his who had thrived for ten years or more after a diagnosis like mine. Now, talk like that would be irresponsible if he did not feel such an outcome was a realistic possibility, and this general is certainly not irresponsible. 

 

We both decided very quickly not to go overboard with our reaction, and after a long cuddle and some tears we have not had much further discussion so far. But it was clear immediately that the remark, together with the other hopeful indicators, has had some influence on us. We will remain hopeful but also remain ready. After this treatment phase will end, all being well, in February, there will be a period without treatment, standard practice to allow to body to recover from months of well-intentioned poison. The most likely scenario is probably that the remaining cancer cells will remain docile for a while after that, but will then use the treatment lull to begin to reform into clusters and eventually regain their potency.

 

Still, the change in tone feels like a clarion call to convert hope and vague intentions into action, and not to waste too much time in going about it. Our intention remains to return to Europe next spring, but now the many complications involved have to be worked through rather than used as a reason for procrastination. Further, those plans have to somehow remain valid for a longer time period. As an example, until now my heart has not really been engaged in the plan to upgrade the villa. Perhaps a part of me doubted it would ever happen or felt that the project would surely no sooner be executed than become outdated by adverse medical changes. That is still quite likely, but we are now much more likely to find the energy to advance the plans. The mood will still be one of holding our breath and hoping and handling as many contingencies as we can, but that is no longer a reason to put things off.

 

So this September rentrée somehow feels especially poignant now, and in a different way to how I contemplated a few short weeks ago. True, it is a return to the old routine, albeit punctuated by some nausea and plenty of medical appointments, and that return would have been a source of immense gratitude anyhow, signifying a milestone I did not expect to arrive in good health. But now the return somehow feels rather more than one more extension of bonus time or one more section of an elongated coda. Now, even though very little has really changed, it almost feels like a temporary reprieve from the coda altogether, perhaps more of a da capo section to the piece. And da capo sections can have a propensity to be longer than the orchestra anticipated, to demand a renewal of orchestral energy, and offer an opportunity to discover something completely new in the music.

 

Our oncologist is indeed an accomplished orchestral player, a talent held in abeyance while his work is so demanding but something he frequently muses about restarting when he hears my wife and I banging on about our choirs. Perhaps he is ready for a more poignant and more fully encompassing rentrée as well? After all, I imagine he could almost see France across the Rhine from his college campus. No doubt this journey has many surprises to reveal yet, some of which will surely be devastating, and we will remain as ready as we can. But we are grateful to have been alerted to the possibility of an altogether more welcome surprise. Danke schön, Herr Doktor.

Storyworth

My daughter has been especially active in trying to create memories of me before it is too late. Part of her motivation is having a two-year-old daughter of her own. Her grandparents all died before she was born or early in her life, and she no doubt keenly feels some absence of memory and knowledge. She has made a lot of effort to see me physically since I received the diagnosis as well, despite living fifteen hours away by plane. 

One of her initiatives has been to sign me up to a website called www.storyworth.com. That is a service that offers the chance for members to write a series of short stories, not unlike blogs in some ways, to selected close family. It is all online and very simple, and Storyworth provides prompts for subjects to write about once the inspiration dries up.

 

In common with some other initiatives, this one has a rather morbid element. The context of impending death is ever present, and perhaps that would inhibit some people from signing on or from writing frankly. With our policy of openness and history of blogging, I have not encountered such issues, though of course some topics do make me weep on occasion. Overall, I welcome it despite the deathly overtone. It is a gift to be able to leave something meaningful to my granddaughter, even if her physical memories of me will surely be minimal.

 

I recommend Storyworth for anyone in a similar position, and perhaps more widely too. My sister did a great job in encouraging my mum in her later years to write some things about her life, but the structure offered by Storyworth might have helped her shape some of her writing more helpfully. The risk of the morbid aspect should be a prompt not to leave it too late to start something like Storyworth too. Many people of my generation are quite comfortable with writing: later generations, bought up with a lot less written language and a lot more visual and immediate content, will probably not take to it as readily.

 

I have a second and lazier motivation to create this particular blog post, beyond the recommendation of Storyworth. I can save myself some time today by simply copying and pasting a recent story. My sister recently invited me to create a Storyworth posting as though I were a guest on the long-running UK radio show Desert Island Discs. There have been over 3,200 episodes of the show, starting around the time I was born, though I have never listened to a single one in its entirety. The guest of the week, who these days I suppose we must relabel a celebrity, is invited to an interview to talk about what they would bring to a hypothetical desert island that they were hypothetically marooned on. The standard choice is eight music tracks, a book, and a single luxury item. It is a nice format for a show, and I enjoyed creating my own list after the prompt from my sister. Here it is.

 

Thanks for this Jacqui. I would surely be hopeless on a desert island, unable to start a fire or do anything practical. Ben Gunn was miscasting, unless he was supposed to be played in parody, which I am sure is how I executed the role, deliberately or not.

 

I shall start with tracks that remind me of my parents. For mum, Let’s Twist Again by Chubby Checker comes to mind. She would always be the first on the dance floor and was quite talented at the dances from that generation. For Dad, let us go with Downtown by Petula Clark, a quality Tony Hatch song of the 1960’s. Hatch was a British Burt Bacharach and wrote many great numbers for Clark and others. Mum always claimed that Dad had a crush on Petula. His choice of her songs showed some good taste at least. We saw her perform live once in Eastbourne, mum being typically quick to point out Clark’s colostomy bag.

Then a couple of songs from my own youth. I always rated Paul Simon (and loved seeing him live in his late seventies at Forest Hills) and my favourite track of his is Late in the Evening, an energetic dance number I would always turn up the volume for in the car or wherever else I was listening. My dating and dancing era was short, mercifully for any of the female gender, but in my last year at college I did some clubbing. The music was post disco and punk and pre synth and rap, and was often angry (thanks again, Maggie Thatcher). Let us take Tainted Love by Soft Cell as a typical example that comes to mind.

A bit earlier, in my teens, I came to appreciate small ensemble singing, epitomized by The King’s Singers. They made an album of songs by Flanders and Swann and by Noel Coward, which I played again and again. I could probably list every track in order even now. I’ll come back to that choice (which I guess would be my desert album if I were allowed one) later.

Now we move forward to when I rediscovered choral singing and classical music during my forties. I’ll take Fantasia on a theme by Thomas Tallis because it is peerless, and because it especially recalls my transition year of 1989, because the piece was on an album I played relentlessly while depressed and full of guilt from my separation. It was also during this period that I discovered early music through a choir set up by my first singing teacher. Our first concert included Jesu Dulcis Memoria by Tomas Luis de Victoria, as brilliant a short anthem as ever was written. Later it turned out to be the last piece of music I sung in church before the pandemic in March 2020.

Back to Noel Coward. The third wedding reception for Carmela and me doubled as a farewell to our community in The Hague, so I chose to sing Coward’s I’ll See You Again. A couple of years later I wanted to sing it again at a cabaret, and somehow a friend discovered the guy who had written the arrangement for The King’s Singers all those years ago, and sheet music duly arrived from him - he was flattered to be remembered for his work. I still have the sheet music and it would be great to perform it one more time, but other tracks from the album have become staples in my cabaret repertoire too.

For my last piece I have tried recall the many concerts I have had the privilege of performing in America, and I landed on one from a holiday/workshop at Princeton. A wonderful young choir came together with a few token oldies to perform the six motets of JS Bach. It was the most memorable concert, because by its end the whole choir, orchestra and audience were on their feet dancing with joy. Who said classical music was dull? From the motets, I love Komm, Jesu, Komm, with its middle section that just demands a dance.

So there are eight tracks. What about a book? I am going to cheat a bit. The film Philomena from 2013 had a profound effect on me; I was gushing tears for weeks. Judy Dench and Steve Coogan were magnificent, and the plot was brilliant and rang so true. My ex-wife suffered trauma with similarities to that portrayed by Dench’s character, and the film helped me to understand her anguish more closely. The film was based on a book by Martin Sixsmith titled The Lost Child of Philomena Lee. I guess I should read it.

For my luxury item I will go large and take our villa in Portugal. Nowhere has so many happy memories for me. If I could bring along some restaurants, chefs, boardwalks and nearby cities, all the better.

Thanks again Jacqui. Would you care to have a go at the same challenge yourself?

 

There it is. I have reached my target word count without the normal level of effort. That is especially welcome this week, as it gives me more time to process another change of attitude regarding my cancer, something that may signal another new phase. I continue to produce MRI scans that delight my oncologist, and this week I got the impression that he was inviting us to prepare for the possibility of a longer period of remission than we have been imagining so far. We know there are no guarantees, or even likelihoods, of rare good outcomes, but even thoughts of possibilities are encouraging and need thinking through. More on that next time.

Bonus Time Blues

 My treatment continues to go well and the side effects continue to be manageable, and somehow I am finding it a little bit easier now to be more optimistic about my prospects to survive healthily for perhaps another year or even more. But I am learning that that mindset comes with emotional side effects too, and they are not always quite so positive.

 

For most of the time I find myself feeling more and more blessed by this bonus time. I have even found ways to enjoy the dreaded New York summer rather more than usual, primarily by escaping it for as many as 55 days. We had 31 days in Portugal, then seven in Italy. Then this month I enrolled on a ten-day singing course in Massachusetts, followed by a week in Canada with my wife visiting her brother and his lovely family. Even the time stuck in New York has been more bearable than usual, with our weather on the benign side while it seems everybody else has had extremes to deal with.

 

One thing I have noticed as I move further and further into bonus time is that I feel less need to talk about my cancer. Partly that may be due to my own expectations of healthy survival time. The odds on lasting five years or more have not budged much, but the chances of getting half that far certainly have. When I recall the expressions in the eyes of medical professionals and loved ones and people with relevant experience, around the time of my major operation, I saw an expectation that I was not long for this world, and inevitably that affected my own expectation too. Now I am more optimistic, and the urgency of explaining the situation to others has diminished as a result. Partly it may also be physical, specifically how my head looks. After the operation and the start of radiation therapy, the scar on my head was clearly visible to all, and perhaps that led to some need to explain it. Now a lot of hair has grown back, weirdly in its original dark brown colour. Weird hair colours are commonplace these days so don’t beg an explanation, but it has covered over the wound, so fewer people look at me quizzically.

 

Perhaps I am also more cognizant of the preferences of others too. Most people going on a singing holiday want to cheer themselves up by singing, not depress themselves by hearing tales of the failing health of their fellow singers. I think I judge better now who to share with. Anybody under thirty, even close relatives, have no idea how to respond, so now I save them the bother by avoiding the topic altogether. On the singing course, I was selective and, I hope, smart, in choosing who might be interested in my story. 

 

Then I have noticed a new darker side of optimism. While every waking thought was about cancer, I found it easier to move quickly past any other possible sources of anger. I would follow the news less closely and less critically, perhaps because a part of me was always thinking that the consequences of that news were increasingly irrelevant to me. People I would previously have been annoyed by no longer had such a detrimental effect on my mood. And I even became somewhat less critical of the USA, after a period earlier in 2022 when its flaws became close to an obsession for me, one that only made me feel more and more judgemental and miserable. After the diagnosis I found that I could be more serene in many situations, especially once the steroids had been removed from my list of medications.

 

On my travels I found my more critical traits to have returned. On the singing course, why could I not simply celebrate day after day of singing in lovely surroundings and the chance to meet many truly wonderful people? I could do all that, but I also found myself comparing the charms of Northampton and its Smith campus unfavourably to its European peers, and noting how much even a small fraction of the alumni generosity showered at Smith could improve the decrepit public school system. I also started griping about some singers who talked too much and caused us to learn pieces more slowly than we could have, and the many flaws I perceived in the workshop design and teaching. This was the old curmudgeonly Graham re-emerging, to the detriment of everyone, including me. By the penultimate evening I was really quite angry, and it took me some days to realise how this anger only rebounded on myself and those unfortunate souls who happened to be in its path.

 

The same sort of thing happened again in Canada. Why could I not simply celebrate a joyful, relaxed week with my wife and her impressive, generous and kind family? I could indeed do that, but less benign thoughts came to the fore as well. We visited the splendour of Niagara Falls, but I could not help but feel angry about how the pristine natural wonder had been compromised by the horrors of US and Canadian urban planning, pandering to ugly corporate interests and the worst aspects of human nature. Then we returned to Mississauga, as ugly a sprawling suburb of an ugly city as could be imagined. My wife’s relatives have found happiness there and made wise choices, but I could not stop myself becoming angry at the endless rows of boxy houses, all with multiple large cars parked outside, interspersed only with shopping malls and parking lots.

 

This sort of negative thought came frequently to my mind during the long anti-US phase immediately prior to diagnosis, and now I see how I managed to move past them over the months when cancer expunged almost everything else. But in bonus time, cancer sometimes takes a welcome back seat, and the negative stuff occasionally takes its place alongside the positive emotions centred on gratitude. For a long time I managed to avoid becoming too angry with the US news, but now the prospect of another Trump-infested election cycle starts to fill me with horror, as does the other relentless garbage that passes for news, while real public policy issues are completely ignored. How can somewhere so wealthy tolerate so many of its people living in abject poverty? What on earth is the rationale behind China policy, beyond a childish macho desire to remain top dog? Six months ago I felt ready to delegate such challenges to the next generation, but now I find myself being sucked back into the ugly mess.

 

Fortunately, most of the time I still find myself able to move past these negative thoughts, relying on the good practices I acquired during the period before the start of bonus time. Anger and bitterness help nobody, grief and sadness are fine but can be overcome by love and kindness and gratitude, leading to companionship, acceptance and peace. I can be thankful to have been granted this bonus time to strengthen these positive emotions, for my sake and that of those that I love. It is not so difficult.     

attitudes and Decisions

 US Sports have some strange contrived rituals. Today is baseball trade deadline day, the last chance for teams to juggle their rosters before the playoffs. Teams in with a chance of success might pay more than usual for a player that could make a difference. It makes sense, but is a bit depressing for teams and their fans on the selling end of the equation. On Saturday my team traded one of their best players and it surprised me not at all when I tuned in to watch their game that evening to discover they were already losing 9-1 to a poor opponent. Talent matters, but a winning attitude and team mentality matter more.

 

It reminds me of when my career was on the rise and I could expect to be moved to new locations and positions quite frequently. I learned quickly that one imperative when arriving at a fresh outpost of the empire was to give the impression to the locals that I hoped and planned to be there a long time. I had to say it often, and I even had to believe it and act like it, or I would have no chance of building any respect and to create a winning team. As an itinerant expatriate, one of my family rules was to operate as if we would be staying forever, right up until the day we knew we were not. That also helped the family to invest in their situation and to stay happy.

 

Now I am on a very different journey and the advice I receive most often is that a positive attitude is the most important driver of sustained good health. Some people attribute the effect to prayer or superstition of some other external influence. In any case I find it to be true, and I have discovered some related facts too, such as the benefits of staying active when tired or eating when nauseous and not fancying much food. The problem with the advice about attitude is that it is not easy to act on it. You can’t create positivity out of thin air; instead you have to things to help stay positive. As well as saying it, you have to believe it and act on it, and that can be tough when your body is sending wholly different messages.

 

So far I have managed to follow my own advice most of the time, mainly because I have the advantages of feeling physically well and a strong medical and support team. I don’t judge those who can’t stay positive, because many of those people cannot share my very practical reasons for optimism and thankfulness.

 

Even within a general spirit of positivity and an attitude of getting on with life, there are limitations arising from my situation. As well as maintaining hope, I insist that it is important to try to be ready for what lies ahead and what may confront us at any time. If bad news comes as a complete shock, we are less likely to find a smart response to it when it arrives.

 

This dichotomy arises on an almost daily basis via practical decisions. Yesterday I received a renewal notice in the post for my favourite magazine, The Economist.  There are options to renew for one, two or three years, with discounts on a per issue basis for the longer options. The subscription does not break the bank, but certainly adds up over time.

 

For how many years should I renew? Previously I would have taken the three-year option without much thought, once I had confirmed that it was cost free to change the delivery address in mid-subscription. Now I will probably opt for a single year. Even though it also cost-free to cancel at any time, I cannot imagine my wife getting around to it in the event of my death or incapacity, and the odds of those eventualities have changed, whatever attitude I choose to take. This would be like all those streaming subscriptions we pay for month after month after having accepted an offer of a short free trial for a particular program and then not got around to cancelling. Another of my principles is not to create unnecessary complications for her.

 

It is amazing how many such smallish decisions face me week after week. The hard part is not the decision per se, it is the small reminder of an unwelcome reality. In a way it is just like my New York Mets struggling to compete after being separated from some of their best players.

 

I face this reality daily, and I have come to embrace it and to let it affect my mood only marginally. Others around me have to face it too. Imagine the people running some of my choral groups, in the process of signing people up for the coming season and hoping for enough certainty to enable them to plan repertoire and dates and budgets. I am not much use to them, only able to commit with a series of caveats, yet still creating guilt in their minds so they want to try to indulge me. None of this is made simpler by the complex decisions we face relating to my wife’s work and our possible relocation at some point.

 

My old expatriation rules surely apply. For most items and decisions, I must expect to be around here for a long while and have to actually want that eventuality. I have to say it, sound as though I believe it and act on it. For most decisions that is the determining principle. Six months expensive car insurance became payable this week too, and I simply paid it and moved on swiftly.

 

There is some sort of threshold in play here, and The Economist renewal lies somewhere near the boundary. For the biggest decisions we have to take the new reality into account. We now renew our apartment lease for one year instead of two and insist on a clause whereby we can exit cost-free and with limited notice. That ten-year debenture for membership of the new golf club in Portugal does not make much sense to consider now.

 

As with so much on this journey, the emotional and practical aspects interact, which I suppose is this the basis of the advice to try to stay positive. Every choice, every waking thought really, comes with the very clear context, the context of cancer. Still, that is how things are, and it is not hard to stay positive most of the time, given all the blessings I can count. Remembering lessons from former experiences does no harm either.   

Boredom, Loneliness, Rest and Peace

 Every so often somebody asks me if I’m ever bored. The context is usually my retirement at fifty, and the questioner may be contemplating their own retirement and be worried about how to fill their days. I have a few stock answers, all starting with the word no. Usually I expand on my feeling that there is always a wide choice of things to do, most of us can find some that work for us, and the removal of the need for remuneration actually opens up possibilities. Especially now, I am so happy with the decision I made to retire early.

 

But this weekend a strange thing happened. A good friend asked me the standard question, probably not for the first time, but perhaps indicating a change in his own mental state. I found myself pausing before answering. Because for the previous two weeks, since getting back to NYC from Europe, I had been bored as hell.

 

I spent a while pondering possible causes and found several. If I am strictly honest with myself, I have often been bored during the New York summer. The heat and humidity are horrible so being outside is not a good option and inside there is the constant battle with air conditioning machines, trading off feeling hot and being bothered by noise. Neither heat nor noise help with reading or watching TV, and this year the Mets are playing losing baseball to boot. There are few choir evenings, yet my wife still has to go to work. And July has only just started so there are many weeks of potential boredom ahead. I can swim, sharing the pool with. Thousand kids as usual in summer, but tennis feels too risky even on days that are free of humidity. I could not find a single Broadway show that interested me last Wednesday either. 

 

Then I found myself contrasting the inactivity of being back in New York with the delight of the previous weeks in Europe, with never a dull moment and much to celebrate. It did not help that last week was an oral chemotherapy week, and that often leads to nausea, loss of appetite and fatigue towards its end, certainly bearable but hardly a balm against boredom. Now I have the additional issue of occasional dizziness to cope with too. I am tired so lie in bed but that state can bring on the dizziness, so I get back up, and then what?

 

Then there is the weird paradox of my time horizon. If you think you only have six months to live, there is not much time to be bored. That may still be the case, but now we are also considering much longer survival scenarios. Should I start some new hobbies or projects? If I will be alive but diminished, will boredom become much more of a pervasive risk?

 

One great relief is that no loneliness has accompanied the boredom. In my experience, loneliness is the root cause of many unwelcome emotions. I am so lucky to have a loving life partner and supportive family and friends, who will help me through any tougher moments. In Europe I was rarely apart from my wife, while back here we have been forced to settle back to the regular routine of her office days, but that is truly no real hardship. Facing up to chronic sickness alone must be so much harder. It is no surprise that long-wed couples tend to die within a few months of each other.

 

Anyway, I am pleased to relate that my boredom has lifted for now, and not just because the humidity is taking a rest and the nausea from treatment week has gone too. My salvation was the weekend.

 

That started on Saturday, when we spent a delightful few hours chatting at the home of good friends (and I’ll forgive and even thank them for quizzing me about boredom). I had a nap in the afternoon before cantoring mass at our local church as usual. On Sunday we went to mass at the church where I usually sing and were delighted by the music and the atmosphere there. After a dim sum lunch and another nap, we went to help serve supper at the old folks’ home where we volunteer, our first visit in two months.

 

Having spent some time pondering where the negative feeling of boredom came from, I spent further time wondering how my spirits could be so lifted by a simple weekend. Part of the answer comes from the word we, in that all our weekend was spent together as a couple. I can expand that we to include the friends and communities we spent time with.

 

I had forgotten how important these simple routine weekends are to me, and how the liturgy often plays a beneficial role. I here the readings twice, listen to two contrasting homilies and participate in two sets of music choices, and often we even end up talking about the messages while at the home. For all the harm done by religion and religious leaders, there is much comfort to be drawn from these simple and wise messages.

 

The gospel this week was summarised within the offertory hymn I sung on Saturday evening. It had a feel more of a song than a hymn, with an octave leap in the second measure and beautiful legato lines. I enjoyed singing it very much.

Come to me, all who labour and are heavy burdened, and I will give you rest.

Take up your yoke and learn from me, for I am meek and humble of heart.

And you’ll find rest for your souls. Yes, my yoke is easy and my burden is light.

 

When we think of heavy burdened people, we naturally consider folk like miners or women carrying water on their heads in Africa. But burdens come in many forms, often without a physical component. Somebody caring for an aging parent is burdened, as may be somebody struggling with loneliness or disease or fear. As a goal to mitigate this, rest could refer to a long nap or a summer vacation, but more powerful is a soul at rest, a soul at peace. That soul is usually not lonely and rarely bored, and has probably helped itself through service to others. Considered this way, it is also easier to appreciate the power of prayer.

 

Early in my cancer experience, I tried to come up with a model to describe a progression of emotions. Reject anger and bitterness, embrace sadness and grief and fear, and utilise thankfulness to move towards acceptance and eventually peace. I have found the model extremely helpful, and the liturgy of this week seems to underscore it too, following my rough patch of last week.

 

How can loneliness, boredom and rest be incorporated into the model? I think I will twin companionship with thankfulness, and rest with peace. Companionship is the antidote to loneliness and boredom. Companionship can involve sacrifice and compromise, but its benefits can make all the difference. For some the companionship can be with divine concepts, but fellow humans are perhaps more readily to hand. Unlike thankfulness, you can’t simply create companionship in your mind; instead you have to work on it, and ideally not wait until a crisis strikes. We all have ample potential to offer companionship as a gift to others, and that gift is one that rebounds to our own benefit.

 

I am truly blessed to have plentiful companionship in my life, and that gives me confidence that any boredom will be limited to its usual seasonal moments.    

Coping Strategies

I realise now that I have nearly a year of experience of living with a health crisis. I have made many mistakes but also learned a few lessons. Perhaps some of these can be useful to others, even if every situation is different.

 

My first learning point is to choose your team and to set the crisis up as a sort of project. It is a strange project because it starts in an instant and has a variable end point. One of the tough tasks of the team is to constantly be working towards the best available closure for the project, given that closure can occur suddenly.

 

The team is much easier to form and much more likely to be helpful if it can be anchored by a loving life partner. Wow, that is a powerful thing to have in these circumstances. But I have to try to remember that my life partner has her own goals for this project, and indeed the project will close for her later than it will close for me. This is not all about me! Last month a friend quoted an interview with a retiring oncologist, whose top learning point was to note that he was treating the partner as well as the patient. Bravo: if only more medical professionals could have the maturity to see this.

 

I set up my core team in the frenzy of the early days, facing a biopsy procedure that I feared might be fatal. As with all project teams, there need to be goals, and clear roles which play to strengths of team members. The team process has evolved over time, but we have made each other stronger and more effective by working together. Having team members dial into my consultations has been especially helpful.

 

My next learning point is to try hard to manage incoming communication. Medical professionals are invariably impressive clinically, but the quality of their communication varies wildly. We have experienced some excellent communication, but also insensitivity, inappropriate messages and even mistakes. I have learned that if I simply let things happen I often end up confused and more upset than I need to be.

 

In the early stages there are surely many messengers, often under a lot of time pressure. One immediate trick is to use the team by having them dial in. But as the crisis develops, it is possible to build relationships with some of the experts and to help them craft their communications in ways that suit me. By now our lead oncologist knows what I want to hear and how, and what works for my wife. We have been lucky enough to reach the same level of trust with some others. As a general rule the experienced nurses are fantastic, the senior doctors are variable and the interns are frequently terrible communicators.

 

A third lesson I to put effort into understanding my medications. The treatments and scans are all a bit of a mystery to me and that suits me fine, but when it comes to meds I can make a difference. They all have their purpose, but many high side effects and those effects are different for each patient, so it is hard for the doctors and nurses to prescribe pills that work best for me.

 

In my case, this was most obvious with the steroids. I ended up taking various doses of steroids during October, November and December last year, and it took us a while to work out that they were the culprit when it came to personality side-effects. Steroids play an important role in treatment, reducing swelling and even preventing catastrophic setbacks, but in my case they also made me rather aggressive, over-active and judging. I was wide awake soon after 5am each morning and anxious to get on with many projects. I was grateful for the 5am kick-off games during the soccer world cup – they provided plenty of distraction and prevented me from doing even more dumb things while amped up.

 

Luckily I was able to build trustful relationships with specific nurses and doctors and we could start to talk through the trade-offs involved with medication choices. They support my general principal of minimising the medications I take, and are happy to work with me so that the overall effect is as positive as it can be. 

 

There is no escape from the main oral chemotherapy pill, since that is the one which can kill the cancer cells. Its job is to hang around my body as long as it can and to destroy anything it finds that it does not like. With all that poison in my body all the time, it is no wonder that the pill causes side-effects. It is great that over time I have been able to work with my doctors and nurses to keep these under control.

 

A related lesson is to work out myself how to minimise side-effects. This will surely be different for everyone, which means there are few general rules and it is not enough to rely on the medical professionals.

 

Nausea has been my main problem ever since I started on the radiotherapy and chemotherapy. I have anti-nausea pills up my sleeve, but I try not to rely on them, especially since they have their own side-effects. For me, the best solution for nausea is to eat. It is counter intuitive, because the nausea can kill my appetite and make some foods very unattractive to me, but I find that if I force myself to eat (as well as to stay hydrated), then it passes more quickly. Usually I find simple starchy foods do the trick, as well as some fruits, notably apples. I also find I am fatigued, but I tend to simply embrace that, sometimes taking three or four short naps in a day. I am lucky in that I seem to be able to sleep anywhere and at any time, yet I wake up before the nap destroys my ability to sleep overnight.

 

Now I have the dizziness as well, on and off, and that was very scary when it first emerged. It has not been a problem lately, and I already have a pill for the next time I have an issue, and I am optimistic that the physical therapist can do something for me after a consultation next week. I quickly found that a way to control the dizziness is to breathe deeply and actively.

 

Knowing my medications and developing my own coping strategies seems to help with the physical challenges, but the emotional ones are something else entirely. Having a strong team is even more critical when it comes to emotions. The best decision I made with my team was right at the beginning when we resolved not to be angry or bitter. We have been able to face the other stages of grief without having the anger boomerang attacking us.

 

We also resolved early on to avoid secrets and to communicate widely and openly. I think this has turned out to be a good idea too, though I recognise it is not for everyone. And for sure in the early days we were guilty of over sharing, another legacy of those cursed steroids.

 

Extensive and open communication has also yielded dividends for us within the team, and especially within the marriage. These emotions are hard enough to face as it is, so the more we can help each other from a strong base of understanding, the better we can manage. Our time horizon is still fluctuating wildly, but at least we can talk about that and its implications, and slowly navigate our way towards a direction that can help us both.

 

So that is many lessons, and no doubt there will be many more to come. And did I mention thankfulness? That is the magic medicine that makes everything better.