My Happy Place

 The treatment continues to work as intended, proving tolerant to me but attacking the cancer cells in my body. I am well into the more gentle regime of five nights of oral chemo each month and little in the way of other medication. And the last two MRI scans have shown as positive a picture as the oncologist could hope for. This pattern is not uncommon, but is far from universal, and is a great blessing and source of hope, even though statistics say that the cancer nearly always returns eventually.

 

Best of all, we were cleared to travel to Europe. We arrived in Portugal on May 19 and will stay here until June 17, after which we will spend one further week in Italy before returning to the USA. I must take one cycle of pills while here, and also visit a local lab for a blood draw each week so the oncologist team in New York can continue to monitor progress somewhat. I also have to be especially careful in the sun.

 

Portugal, and specifically the villa I bought in 2005, has been my happy place for a long time. To me, Faro airport has its own unique smell and arrival there signifies many blessings in my life. It is where I relax with family and friends and ponder all the reasons to be thankful in my life. What is most remarkable about this visit is how my nausea disappeared the moment I arrived here. The previous cycle included regular bouts of manageable nausea, but in Portugal I have only noticed a slight passing twinge once so far. My appetite is back to its normal state too, so we have been able to enjoy the full range of fine food and drink here.

 

The other remarkable thing about this visit so far has been that I have found myself to be emotional a lot of the time, with frequent bursts of tears. It took me a while to understand what lay behind that, but I think I worked it out eventually.

 

Goodbyes are the hardest part of my emotional journey, and this trip has already included several. My son-in-law had to leave after just a few days, and yesterday my daughter and her daughter also left, on the day before Kiara’s second birthday and her last day of eligibility for free flight. Spending time with loved ones always has a bittersweet element in the new situation, and it always leads to a mixed menu of mixed emotions when I am with my daughter and grand-daughter. I find I am the subject of more photos than usual and I am called into more deep conversations too. My family has also signed me up for a service called Storyworth, in which I am asked to write on defined topics each week. It is a bit like blogging, and it is clear that all these unusual projects are nakedly about creating memories for after I am dead, especially for baby Kiara. I go along with it and even appreciate it, even if the context is rather sombre.

 

Then we are also using this trip to simplify my affairs in Portugal, so that my daughter can take over seamlessly when the time comes. My wife had a theory that implementing some of these changes, after all a preparation for death and a significant concession of control, might be one reason for the tears. It is possible, but I don’t think it works as an explanation. Actually it has been a relief to get the necessary administration started, especially because my wife and daughter have bonded over the project and I can live free of worries about any future disputes.

 

Even so, all those practical changes might have left an emotional scar. The goodbyes certainly did, with the prospect of many more in store over the coming weeks. The deep conversations can be tough and have also surely contributed to some emotional consequences. Part of this is about our change of mental timeline. A couple of months ago we felt unable to plan more than a month or two ahead, but now we have allowed more optimism into our minds and even talk about 2024 sometimes. It is good, but it does not change the fundamental situation so can be tough. And the new horizon makes such discussion more complicated too, involving many dilemmas and trade-offs. 

 

 But I have decided that none of these are primary causes of my tearfulness. One sure primary cause is a torrent of thankfulness. Portugal and time with loved ones always cause me to feel thankful for the unusual range of blessings in my life, past and present. This trip has already surfaced an abundance of happy memories, as well as much present joy.

 

But thankfulness does not explain it all. I have worked out that I am also mourning. I am finally mourning the loss of a large part of the anticipated shared future for my wife and I in retirement in Portugal.

 

It was just about now that our plan was for my wife to retire early and for us to move permanently here. That notion had given me much anticipated joy in recent years and it vanished on the day of my diagnosis. We both quickly realised that it makes little sense for my wife to plan to live here as a widow, at least not until she is much older. We could hope for some joyful visits to Portugal. In our new mood of optimism we can even open up possibilities of spending much of my remaining time here together. But the dream of a long, peaceful, idyllic life here together is no longer realistic.

 

I started this mourning process in the frenzied steroid-charged days and weeks following diagnosis, in the same way that I also started the administrative changes that we are implementing on this trip. I suppose the steroids did their job. But the administrative changes eventually required a trip here, and I believe the same is proving true of the need to mourn.

 

I have been calmer in recent days and am hopeful that the mourning process may be running its course now. Even if there prove to be more tears, I know that the tears are healthy ones in a necessary cause. I am in my happy place. We have achieved what was required administratively. I am surrounded by love and full of thankfulness. There is joy to be had from memories and from current experience and even from some anticipated future joy, even if the final category of joy has been curtailed somewhat. And that requires some mourning. Bring it on.   

How have I changed?

 Nine months from the initial symptom and six months from the primary diagnosis, I took time to review how the dramatic events of recent months have changed me. The physical changes are most obvious, though sometimes easy to overlook and downplay. But there has also been ample opportunity for changes to how I think and behave. My conclusion is that the changes in these areas are probably unusually minimal, and that is a good sign.

 

While I am still functional, I have to accept that the disease and its treatments have had physical repercussions. The most significant impact has been to my eyesight. Two weeks ago I saw my ophthalmologist and the latest field vision test made clear that my left sided peripheral vision is indeed much worse. What before was a scary but smallish black circle on the chart has become a vast sea of black on the whole of the left side. While I no longer see apparitions and the double vision has gone away, the left side is very much limited. Being careful, I manage to avoid tripping and it is rare now that I bump into people or things, but I am certainly only fit to drive very short distances. I can read, watch TV, and sing, but I suspect my competence for all of these activities has diminished somewhat. I believe it is the secondary effects that have an impact, in the same way that if I misplace something small nowadays I often struggle to recover it. I can read the music with few errors, but am I hearing the ensemble sound as well as I was? I now have to rely on replay to see what is going on in all sports, and I also find that I am not following the plot of a TV show as well as I was before, even with the volume set louder than I used to have it. Still, my brain is adapting, and I am broadly functional, so I will take it.

 

My other significant physical issue now is recurring nausea. Whereas the vision problem comes from a combination of the disease and its treatments, I understand nausea to be only from the oral chemotherapy pills I am now taking five days per month. The job of the active ingredient of the pill is to hang around in my body as long as it can and to kill off cells it does not like. Mercifully it seems to be doing an excellent job and my body is tolerating the treatment well, but the nausea is a downside, and seems to hang around for several weeks after a cycle of pills. I am averse to loading myself up on too many anti-nausea pills, and in some ways I also welcome the nausea as a sign that the main pill is having an effect.

 

When my mood leads me to silently complain about my physical limitations, I find it helpful to consider the ways in which I do not suffer physically. I still pass all the motion and strength tests easily, and also the cognitive ones. I am not bothered by headaches and have avoided fevers and infections so far. I do feel a bit wobbly sometimes and have to take some care when moving about, but I still feel safe on the streets and in the subway. I do find an urge for a nap once or twice during the day, but so far have not felt so tired at a choir practice that I have asked to finish early. Immediately after the operation I was lucky to avoid any referral for physical therapy, and the longer that situation pertains the better, as far as I am concerned.

 

So there have been physical changes, and no doubt I can expect more over time, and some of these might involve accepting some unwelcome compromises. But what about changes to what I think, my attitudes and values, my overall frame of mind?

 

I have learned that this question needs framing as well to take account of the effects of medication. This was most obvious with steroids. For the last three months of last year I was taking dexamethodone daily, and this had a significant effect on my personality. I was more active, more direct, more opinionated and less inhibited in expressing those opinions. I was full of energy, especially early in the morning, and rushed into many legacy type projects.

 

Looking back on that time, it was probably a good thing, for my mental as well as physical health. I needed to find the strength to sort out various financial matters somehow, and the steroids gave me that strength. I could even take quite a sanguine attitude to the possibility of death or disability from the first two biopsy procedures – the alternative of crushing fear would probably have been less useful, and put even more pressure on my family.

 

But I have only taken ten days of steroids in the last four months, with no immediate prospect of needing to go back to taking them. My personality is my own once again. How does that compare with how I was twelve months ago?

 

There are certainly changes. Nowadays I am prone to burst into tears with little provocation, usually when I am alone and thinking. I am not sure whether this occurs out of sadness, or fear, or love, or being overwhelmed, or physical issues. It is probably a combination of all of these factors. Most often I feel tearful when I contemplate the years ahead facing my wife.

 

Some things don’t bother me as much as they used to. I find it easier now to be extravagant and generous, though I have hardly become spendthrift. I booked the flights to Europe without much care for their cost and we will probably splash out a bit while we are there. I am also less invested in the daily news. I find it easier now to ignore the Trump circus and all the related US political circuses, and I think I am a bit less judgmental about America and Americans generally. The world does not need me to sort out all of its problems, and I retain an optimism that the generation of our kids will achieve great things. I remain critical of US policy to China, mainly because of its negative consequence for human development. The coming AI revolution will most likely become another lost opportunity in this regard, or worse. But again I do find it easier to put aside such thoughts than I used to.

 

I guess one dimension where many people in my situation would change the most would be spiritual, yet I find my whole approach to religion and spirituality have not changed at all. I assign this to having had mature and thought-through positions beforehand. I may prove wrong, but at this point I can’t see myself rushing to God as my situation deteriorates, though I am fully content for my loved ones to find solace in religion.

 

I also don’t witness major changes in my key relationships. My marriage seems even tighter now than it was twelve months ago, and we certainly know each other more thoroughly than we did. The same holds true for my children, and I am grateful that I have no sense of unfinished business with anyone.

Thinking about it, what seems most remarkable is how little my daily routine has changed compared with a year ago. I still potter about doing the groceries or laundry, read and write, walk and swim, follow sports on TV, and traipse into Manhattan for choir practices.

What does this mean? Am I so limited in imagination not to be able to dream up more interesting ways to pass my time? I prefer to conclude that I am content with my daily life, and was indeed content before. I am delighted that my wife has kept her routine too and is invested in her work - she has a longer future to prepare for.

 

We will all need to endure many physical changes when a serious disease strikes us, but I sense I am lucky and unusual in not having had to navigate much change in my attitudes and relationships, certainly once I had managed to move past the steroids. Perhaps I was a stubborn bastard before and simply remain the same now. Perhaps I was lucky that my core relationships have allowed some serenity under pressure. In any case I can only pity those fellow sufferers whose lives have been upended mentally and emotionally as well as physically. One way or another, I have so far managed to avoid such turmoil.

 

I may be wrong, but my short answer to the question about how much I have changed would be “not much”, and I believe that answer, if true, to be one more cause for gratitude.

Let Bonus Time Commence

This is always a joyous time of year. Last night it was a little cold so I wore a coat to choir practice but I did wonder if that would turn out to be the last time it was necessary. I have a complete schedule of rehearsals and performances for all my groups leading up to the summer break. It should be possible to enjoy the wunderschönen Monat Mai, even if there will be a week of oral chemotherapy and an MRI included.

 

Even in normal situations, our planning horizon varies through the year. This season is all about planning the details of the summer. The spring season winds up during May and by the middle of May we aim to have a complete schedule for the summer months. Then there is a planning pause until late July, when we start to plan the detail of our fall activities.

 

With my illness, our planning horizon has been shortened. During the heavy treatment phase, we were planning from month to month or even week to week. There was a rarely stated belief that planning beyond the spring was rather pointless, because there was such a high chance that the illness would develop to disrupt any plans.

 

It would probably be prudent for us to maintain that same short planning horizon now. Even though the treatment has gone well so far and I am on a rather settled regime now, setbacks and developments can occur at any time. Planning too far ahead can easily bite us in the bum.

 

But the emotional benefits of planning for the summer outweigh those thoughts of prudence. We have arrived at summer planning season just at the moment when the health prospects seem most stable. In this situation, this week we made the unconscious decision to ditch prudence for a while and to plan for the summer. Bonus time has officially started!

 

I celebrated this declaration by taking some decisive actions this week. We booked our flights for our five week trip to Europe in May and June. That milestone has always made me feel very good, though in a normal year there would be a countervailing negative emotion because the prices are currently so high. One benefit of having a shorter life expectancy is that splashing out is somewhat easier to do.

 

We are in the midst of a debate about travel insurance. I have always been an insurance sceptic, reluctant to let others make exorbitant margins when I could afford to manage my own risk and be fairly sure that this was an economically sound move over the long run. Of course our risk of needing to make changes to our plans has increased now, but my inclination is to maintain my normal principle, and some fishing around websites this week only confirmed this preference. The quotes for travel insurance were high enough, but then there was the additional concern about eligibility. I suspect that I am not covered for medical claims unless I declare my condition fully, and that making such a declaration would multiply the coverage cost. It is pointless to buy and not declare, since in the event of any claim we would be found out for sure. We will investigate further, but as of now I am inclined to simply accept the risks involved.

 

Booking flights was not the only action signifying the start of bonus time. I also booked myself on a summer singing course. That also made me feel very good, and with the same absence of countervailing guilt or anger about cost. I paid the deposit without even bothering to check the price of the course, something Ib would never have done before.

 

The third action was a bit different because it did not involve any new financial outlay. I have resumed spending an hour a day on my Portuguese language website, www.practiceportuguese.com. Wow, this is an impressive course. On the first day it seemed like I had remembered nothing, but things came back quickly and by day two I felt I was motoring along the highway. By the time we actually arrive in Portugal I am hopeful of being considerably more skilled in the language. True, this no longer makes sense as a ten-year investment, but somehow it seems to make every sense as a short-term project for its own sake.

 

I suspect there are other summer projects awaiting me, and I will be alert to the possibilities over the coming weeks. Being less concerned than before about financial aspects is one likely recurring theme. Pursuing hobbies for pure pleasure may be another. Learning for its own sake, regardless of the long-term, may well be another theme. And a fourth may well be altruism. I am blessed to have been given this bonus time, whether it turns out to be fleeting or even quite long. I can use it for my own pleasure, to benefit those who I love, and potentially to do some good for others too.

 

The last thing that we have initiated this week to mark the start of bonus time is a reopening of discussion about potentially moving permanently from the USA. God willing, my wife has many productive and potentially pleasurable years ahead of her, no matter how quickly my disease develops. It is too easy to put everything on hold. There are always many ready excuses for inaction and procrastination, starting with the need to allow a course of treatment to be completed. But there are advantages to be gained by taking a more proactive approach, even if that involves some risk.

 

This is a complex discussion, especially because of the context of our parallel journeys to different destinations. But the declaration of bonus time makes such discussions possible. If we come at it with a positive attitude, it could even be a source of great pleasure and an opportunity to grow more love. While creating a legacy should not be a goal from this process, it might also be another happy outcome.

 

We can have no idea how long this bonus time can last. What we do know is that hiding in inactivity and procrastinating will only deny us of pleasure. Some tough times surely lie ahead of us, but let us take advantage of the bonus while we can.        

Bonus Time

 My treatment continues to progress remarkably smoothly, and I feel better now than I have done since before the operation at Christmas, including emotionally. When we first received the diagnosis, all of those in my inner circle will have made their own guesses for how this disease was most likely to progress, whether based on discussions, experience, Google, or statements from doctors. It is clear now that most of us thought that by now I would most likely be in serious decline, or at least that was the scenario we should prepare for and plan around. Every so often I have a conversation that reveals this thinking: loved ones are pleased but also surprised that I am still going strong.

 

Now I sense that we are all adjusting our mindset based on the new situation, that possibly this healthy extension to life can last longer than a few months. The original tumour did not behave as aggressively as expected, surgery proved possible and was successful, and the subsequent treatments have kept the cancer at bay so far. Apart from peripheral vision problems, I have no new symptoms and have tolerated the treatment well and have avoided infections, seizures, falls, fevers, and other possible pitfalls, indicating some stability of general health as well as some good luck. Now the treatment regime is stable and not too arduous. We might be able to keep the lucky streak going for several more months, or even longer.

 

It is my general good health that makes me feel most lucky. I always knew there was a chance of living with this cancer for more than a few months, but I think I assumed there would be more of a price to pay, both for me and for my wife. Even in a good scenario, I thought I would be more diminished by now. As it is, my eyesight is a mess but otherwise I am living more or less as I did before, only having to tolerate minor inconveniences such as occasional nausea. 

 

from the beginning of this experience, it is the consequences of progressive decline that I fear more than death. Healthy life expectancy mattered more to me than life expectancy per se. I somehow associated the likely progression of my illness with more or less constant pain, trips in and out of hospital, inability to do much more than vegetate at home, and, perhaps the most fear inducing thought of all, mental degeneration. I also dreaded the effect that this sort of progression would have on my wife, condemning her to sacrifice her own career and months of her precious time to endless caring.

 

All of this might still come to pass. But there is something about my current situation which makes that feel less likely now, at least for a few months. If the treatments have worked well so far, why would they suddenly stop working? If I have avoided all the pitfalls so far, why would that lucky streak not continue? The doctors have a clear path forward, one that has worked for many others in recent years. Medicine continues to improve, and it might even prove possible to recover from one or two setbacks.

 

So now we are in the final stages of planning a long trip to Europe in May and June, filled with family visits and even a singing week in Italy. This trip always felt possible, but in my mind it seemed more likely to be a part of a bittersweet process of closure, involving administrative tidying up and long goodbyes. I sense we are all feeling a lot more optimistic about it now. We might be able to enjoy it, and even to muse about repeating it again and again. There will surely be many tears shed in Portugal, but perhaps the emotional tone can be somewhat lighter than we thought.

 

I do feel a sensation now that I have entered a period of bonus time, an extension of relatively good health that I did not anticipate.

 

Bonus time does not change everything. We must still accept that this cancer will win eventually and could choose any moment to strike. We must still prepare, taking our parallel journeys to different destinations. Our discoveries about the emotional journey remain valid and intensely valuable, notably the importance of thankfulness and the inordinate value of love and care and communication.

 

But bonus time does create opportunities, and I am still struggling to discover the best approach to making the most of those opportunities. The month we will arrive in Portugal will be the month we had originally planned to move there permanently. That plan did the minute I received the diagnosis – it still makes no sense for my wife to plan for a widowhood in The Algarve. But this no longer feels merely like a visit of closure either. It does not signal the previously anticipated bright new future, but neither is it merely a limp to the exit door. It is something in between those extremes, and together we must determine where on that spectrum this visit lies.

 

The bonus time conundrum does come back to the challenge of the parallel journeys. We do know our likely destinations, even if the timing remains shrouded in uncertainty. The core decision still concerns where my wife might choose to live as a widow, and with what work. If she is ready to make those choices already, then bonus time offers an opportunity to implement some things. For me, nothing would give me greater pleasure than helping my wife whenever she is ready to make these decisions, and to be a strong partner in implementing them if physically and mentally able.

 

But there is no need to rush anything either. We can happily paddle along where we are now, in a comfortable apartment close to the best medical care, and with my wife carrying on with a job she enjoys. Even then, I should consider opportunities that bonus time could offer. It would be a shame if I drifted through bonus time and then regretted how I might have been able to use it.

 

Without undue rush, I want to start considering these opportunities. This week I made my first bonus time resolution. Next week I will restart my online Portuguese course. Last summer I was enjoying that for an hour a day and making rapid progress. Once our resettlement plan was discarded that felt pointless to continue, and the prospect was also emotionally difficult for me. But bonus time changes that. Practice Portuguese dot com, be prepared to welcome back your former pupil!

My half-full Glass

 I started this series of health-related blogs last August with “Health and Happiness”. I wrote it before I knew there was anything seriously wrong with me, but after I had first noticed the strange change in my peripheral vision.

 

At the time, I felt physically fine, but I was worried, and about to start on the process that eventually led to the discovery of the tumour in my brain. I was in two minds about it at the time, but It turned out to be fortuitous that I noticed the symptom and acted on it.

 

I can reflect now on how things might have been different if I had not noticed the change in my peripheral vision. The tumour was inside my brain but was, as the doctors later described it, relatively well-behaved. So I would have been able to go about my life normally while this disease was growing inside of me. But at some point the disease would have revealed itself, and most likely this would have been in dramatic fashion, via seizures or falls or fevers or in some other serious incident. This incident would have brought me to hospital, whereupon the tumour would no doubt have quickly been identified as the root cause. But by then the tumour would have been large and spreading and beyond effective treatment options, and life-expectancy would have been short.

 

Still, I have spent the last six months wondering if that might have been a better option for me. I have always thought that the best way to die was suddenly. If we must die at a particular age, then a catastrophic car accident or huge heart attack has always seemed a better option than a long and painful demise.

 

It is a bit of a selfish thought, because for those we love the opposite probably applies. It is hard to come to terms with the sudden death of a loved one. So many regrets are possible from things left unsaid, business left unfinished, and memories left unprocessed. An extended period of being a carer is tough, as is watching someone we love suffering and becoming gradually diminished, but at least that allows plenty of time for reconciliation and closure.

 

I recall a morbidly funny play broadcast on British TV several years ago, in which two elderly residents of an old folks’ home passed the time by playing a game together each day based on the list of obituaries in a local paper. It turns out that the great majority of short obituaries include the word “peacefully” or “suddenly” to describe the death of the subject. In the play one person scored a point for each reference to a peaceful death while the other scored for “suddenly”. The game may have had a few other secondary rules, such as bonus points for expressions like “after a long illness bravely borne”. It was a typically dark and creative British piece of art and the play stayed with me a long time and served as a great conversation starter too.

 

My recent dilemma is almost a personal re-enactment of the play, and the question I have toyed with was at the heart of the drama. Is it better to die slowly (yet ultimately peacefully, without having to bravely bear any illness) pr suddenly, presumably with only a rapid burst of pain and suffering? Having suffered a fair bit of emotional and physical pain over the last six months, I have mused if I might have been better off being blissfully unaware of my condition until it could kill me off suddenly. Part of the premise for the dilemma is found in that first “health and happiness” blog. It is hard to feel happy when we are not feeling healthy. Ill health tends to infect all aspects of our daily life and can even feed off itself during a prolonged state of anxiety. At these times our glass feels decidedly half-empty.

 

The musing was always theoretical. I never looked back on the decision to act on my symptom, wherever that action might have led. Partly that is to do with the selfishness concern. The way things have turned out has been tough for my wife and family, but a sudden phone call with bad news would probably have been far worse for them. Thankfully, we haven’t really had any marginal choices to make so far, though these may arise in the future.

 

I now have a new answer for my dilemma, and it is a much happier one. A couple of weeks after the end of the intensive treatment phase, I underwent an MRI and met my doctors last week. They were very happy with the results, proposed progression to a less intensive phase of monthly five-day bursts of oral chemo and released me to travel. The meeting was reassuring, but I am feeling quite well too so was quite optimistic about its outcome.

 

I know I must be feeling well, and that is a good indicator for truly being well, because suddenly I see many things through a half-full glass. I am experiencing many sensations from an optimistic viewpoint. Only this way do I realise that my glass has been half-empty for several months.

 

There are many examples of this half-full glass. I was walking in March and felt the warmth of spring on my body and started to laugh. I also start to notice the beauty of nature again. I have been permitted to swim again for several weeks now, and the sensation of moist heat on my body from the steam room feels lovely. Last week I went alone to a Broadway play and was able to stay wide awake and appreciate the action. I am consciously enjoying choir rehearsals once more, and last week put a lot of energy into a dress rehearsal with kids and still felt good at the end of it. I remarked to myself how that would not have been possible even a month before.

 

The most obvious feeling of a half-full glass comes from a renewed appreciation of food. The intense treatment killed my appetite and caused thoughts of many of my favourite foods to make me nauseous. Now I can once again appreciate an ice cream and even the rich cake that my sister baked.

 

A stranger half-full glass sensation is that I have started dreaming again. I am waking up fully satisfied with my sleep and often prodded into life by a vivid (and not scary) dream. I have no idea what this signifies but it does invoke thoughts of a half-full glass.

 

With a half-empty glass, only love and support keeps us going. It is hard to feel happy when not feeling healthy. The half-full glass is a great indicator of happiness, and that must also indicate something about good health too. Even if that good health turns out to be fleeting, it is real, a bonus period that I feared would not arrive, and a reward for persevering through the treatments so far. I also hope that this sense of a half-full glass is not only indicating a period of fair physical health, but of emotional health as well. I know I am lucky to have been given these blessings.     

What's it all about, Alfie?

 (In honour of recently deceased iconic songwriter of the 1960’s, Burt Bacharach. Burt will be resting in peace and some awe, certainly if any celestial composer’s hall of fame be listed somewhere in alphabetical order)

 

Last week I fired my shrink, or at least agreed a pause in our sessions. Do not draw the wrong conclusions. I like my shrink very much and feel that if anybody can offer me value in that role, she can. I was encouraged to seek mental health counselling by my family when first diagnosed, and I quickly overcame my generational and national cynicism towards that profession (which immigrant New Yorker could grow up watching Woody Allen movies and not be cynical about shrinks?) and signed up, once it was confirmed that my insurance would cover it.

 

The reason that we declared a pause was very positive. She had given me the reassurance I needed at this time, so additional sessions felt like they would only offer marginal value. She has a waiting list as long as your arm, so freeing up space for others seemed only fair, so long as it was agreed that I could jump the line again if my circumstances changed.

 

After the first couple of sessions, our time together had tended to follow a pattern. The shrink would try to explore my state of mind, and concluded that I had been doing the same thing and reached defensible conclusions. She might try a technique or a device like a questionnaire or model, only for me to be more interested in critiquing the model than being a subject of it. And she would finish the session with howls of laughter, declaring that she probably needed a shrink more than I did.

 

One probe that she used a few times tested how anxious I might be about my legacy, and  questions concerning the meaning of life. What’s it all about, Graham? My stock reply to this probe, after a bit of thought, was to profess that I wasn’t sure that life needed to have much of a deep meaning, and that even if it did, I was not overly concerned by the question. Am I not just a humble creature trying to do his best for himself and those close to him, someone whose demise would probably not change the course of history a great deal?

 

In our last session, my shrink tried a slightly different tack, unveiling a model where I had to select from a long list of values, and then progressively narrow my selection down to only five. The surviving values did not need to represent the meaning of life as far as I was concerned, but probably gave a good clue to what affected my mood. On a bad day, one or more of my core values will probably have been violated in some way.

 

I raced through the exercise, and came up with Integrity, Creativity, Service, Education and Health. The shrink pointed out that all her patients tended to choose health, and I readily agreed that a year ago I would probably not have made that particular selection, health being something we typically assume will be all right on its own, until it isn’t. For me education was the nearest available proxy for lifelong learning and growth. Along with that one, integrity and creativity are values I would probably have chosen ever since becoming an adult, while the choice service owes a lot to the influence of my wife and the fulfillment we have discovered together from volunteering at the old folks’ home.

 

Now I look again at my list, and by cheating a bit, we can use the exercise to come close to answering the question that Burt wrote for Cilla to ask. Health is a prerequisite – without that, not much will be accomplished. Integrity represents a personal set of fair rules, and could encompass honesty, fairness, justice, equity and other values. Education and creativity are my selections for how best to go about activities, but I could also have chosen curiosity, growth, teamwork or even competence – we are at our most effective when we utilise our strengths and work collaboratively. Service is the closest of my five to a purpose. When selecting service I rejected alternatives of three types. One group included family and nation, a second one faith and religion, and a third included pleasure and happiness.

 

Happiness was tempting, for what is the point of choosing to be unhappy? But it can also be rather hedonistic, for our own happiness should not exclude that of others.

The religious ones had the same problem for me, in potentially being exclusive. I struggle with any group that likes to think of itself as chosen by God what gives us the right to consider ourselves so special compared with others, or even other creatures? I do find the teachings of Jesus to be quite a good guide for my behaviour, but there are other good guides available and I wouldn’t want to proclaim my own to be superior. And, while I use prayer, I certainly can’t believe that any God would be selective in who to love or to save, or waits to sit in judgement.

The group including family and nation also felt too exclusive to me. I believe that we should be careful not to identify ourselves uniquely with any team or tribe. Inevitably the service cannot be totally inclusive, since my life will bring me closer to some than to others, and that focus will maximise opportunity. And life partners, really close friends, and family must be where the focus starts.

 

The exercise of my shrink can can offer a sort of answer for Alfie. While healthy, I should act with integrity (according to my definition) to use growth and creativity (and a few other things) towards the purpose of finding happiness through service. I find this summary helpful. The exercise is surely available online if anybody else feels the urge to complete it.

 

But we can take an even more literal and biological approach to defining our purpose. All creatures on earth seek to stay alive and healthy long enough to procreate, hence prolonging and evolving our species. If we include that dimension, it is obvious how our children and their other parents must lie at the core of our purpose. That insight leads me to another, even simpler answer for Alfie, and it uses another baseball metaphor. Some hitters are all about themselves and aim to hit every pitch out of the park. I prefer hitters who will hit a home run if the right pitch comes along but whose main priority is to get on base one way or another, even via a walk or a bunt. These players describe that approach as keeping the line moving. If most hitters reach base, the team will score a lot of runs every inning as the line keeps moving along.

 

I hope I have kept the line moving, whether or not I have hit many home runs. I like the comparison with ants, creatures I find admirable, where everyone knows their role and works as a team towards a common purpose.

 

A final dimension of this musing concerns the end of life, and the need to get out of the way having set up the rest of the line to thrive without us. It gives me great satisfaction that my partner and all my kids, and even many within my wider orbit, are so well placed to thrive. That gives a sense of completeness, and offers a whole bundle of happiness.          

 

Thank you Amanda for prompting these musings and for all the reassurance over the last few months. You provided exactly what I needed, and perhaps can do so again later in this process. And thank you too and rest in peace, Burt, perched next to Johann Sebastian. I hope Alfie had his own Amanda to find his own answer to your question.

Lags and Delays

 It is now ten days since the end of my intensive treatment phase. One thing it has taken me time to become accustomed to is how different effects and symptoms arrive at different and unexpected times. This factor makes it harder to assess, and to plan, and it must also make the job of the doctors much tougher as well.

 

I was given warning that this would happen but chose not to listen fully. The intensive treatment of both the radiation and the oral chemotherapy lasted six weeks in total. We might think that changes would start to occur soon after treatment began and for conditions to revert to their prior state soon after treatment ended. The reality has been very different.

 

Nausea is just one of many examples. My nausea did start as soon as I began my course of oral chemotherapy. It came more strongly on some days than on others. It was usually at its worst during the afternoon. I learned that the best way to reduce nausea was to eat, even though the nausea itself led me to have no desire for most food. I suspected that some of the other medication made the nausea worse, and that the radiation treatment might also create some nausea. But it was not at all consistent, and my theories might be rubbish.

 

The nausea having started soon after treatment began, I naively expected it to go away again quickly after treatment concluded. But it did not. Today is the first day I have experienced no nausea at all, and even that does not give me a guarantee for tomorrow or the day after. I am fairly sure that the oral chemo is the main culprit, and it must have started coursing through my system as soon as I started taking the pills. But the continuing nausea means that the chemicals were still affecting me long after I stopped taking pills. Next time I should make fewer assumptions and be more ready to challenge my own theories.

 

For steroids something similar happens. In this case, it takes only a day or two for me to notice any effects after starting on a course. But the time lag between stopping the course and my body returning to normal is much longer. This time my dosage was quite low, but it still took over a week for my sleep pattern to return to anything resembling normal after I stopped the pills.

 

When it comes to my peripheral vision, I again find inconsistency and unpredictability. The basic influences are clear, but how they work in parallel or with which time lags is far less clear. For sure the operation before Christmas led to a major additional loss of peripheral vision, and the swelling that the operation undoubtedly caused will have probably made things still worse before starting a recovery. Then the radiation will have caused more swelling and deferred any recovery further. But the short burst of steroids should have acted to reduce the swelling, and the end of treatment should have naturally started swelling to diminish as well. Indeed, I have observed all these effects, but not in a straight line or with any consistency. I believe my peripheral vision now is better than it has been since before the operation, but not every day.   

 

A final example is different. Towards the back end of the treatments, I started noticing changes to my skin. Some long-term lesions vanished completely while others seemed much looser, as if I could even scratch them off if I tried. Other lesions appeared that I had never noticed before. Then, a few days after the treatments ended, I started to experience a mild burning sensation across much of my body, mainly in the evenings and at night. The burning sensation came with a strong urge to scratch, which still persists, though perhaps it is moderating a little bit and certainly I am becoming more adept at resisting the urge.

 

I reported this new symptom and now the doctors must try to work out what is happening. Luckily my team is very responsive, and I have a dermatologist appointment set up for Monday. I guess the most likely cause to be more delayed effects of the oral chemotherapy. I hope this theory turns out to be correct, because the alternative is that this new symptom is a development within the cancer itself. Hopefully we can learn more next week, though the symptom itself may have changed by then, and the dermatologist will surely have to run some tests, and even those may be inconclusive.

 

These different timings of onset of symptoms, combined with unreliable tests and even more unreliable self-assessment by patients, must make the job of the doctors much harder. And I am one of the lucky few. For many illnesses for people with weaker insurance and access to fewer medical professionals, it can take weeks just to secure an appointment with a relevant specialist. The timeline for many people involves a lot of waiting, interspersed with repeated frustrating findings which may rule some diseases out but fail to provide a diagnosis of any certainty and one that can be effectively treated.

 

It must be tempting for both doctors and patients to try to predict what may be coming and when. I confess that I tried to influence my doctor to time the most recent course of steroids, predicting that the energy burst (and improved singing voice) would come just when I needed it. I was lucky this time in that the tactic seemed to work, but there simply too many variables and too much at stake to make it a good strategy.

 

There are parallels in other aspects of life. A classic one, very much in the news, concerns how central banks set interest rates. They have a mandate to try to control inflation and employment within desired bands and interest rates are their primary weapon. But it is hard to time the policy because the effects of interest rate changes usually lag by several months. They have to try to treat tomorrow’s symptoms but only with today’s data, filled with unpredictability and influenced by several external variables. It is no wonder that mistakes are made.

 

This is one reason why artificial intelligence may soon make substantial contributions to medicine. My doctors are trying to choose the most suitable treatments and medications to treat my cancer, knowing that every patient is different and that the data they can use is subject to poor measurement and variable time lags. Having a database available of how tens of thousands of other cases played out is potentially very useful in this situation.

 

With the current frontiers of medical science, I am certainly lucky. Somehow I managed to spot my visual symptom early enough for treatment to be able to start before the cancer had already won the war. As a result, I am surely healthier than many patients and able to contribute useful measurement data. Thanks to the hard work of my wife, the insurance available through her job and our location in the global capital of cancer research, I have access to the best expertise.

 

But the confusing time lags are just one of many factors to draw a conclusion that even a lucky patient such as me must accept lots of uncertainty and an incomplete toolkit. This science is progressing at a rapid pace and the guesses made by doctors twenty years from now will surely benefit from improved data and tools. Perhaps I can benefit from some of this myself. At least I can offer one unique data point among thousands to assist in the process. God bless science and humanity.