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.       

The best of times, the worst of times

 We have just returned to New York from our long break in Europe, comprising a full month in Portugal followed by a week ion Italy. I feel so thankful that we were able to take and enjoy this time, considering how often cancer sufferers become unfit for travel at earlier stages of the disease. But I also wept more during this period than at any stage in my life, perhaps with the exception of the weeks around the dissolution of my first marriage. The weeping has even continued during the first days back in the USA. Emotions are running high, eben without the artificial stimulant of steroids.

 

It took me the first tearful week in Portugal to work out why I was so emotional. I concluded that I was mourning for the future that we aspired to and now can no longer anticipate.

 

In so many ways, the spell in Europe encapsulated the life I dreamed of leading during the upcoming decades. I immediately felt comfortable and relaxed in the villa, and by some miracle all nausea dropped away immediately. The pool was perfect and we swam, every morning, most days after a long walk by the sea on the boardwalk and the beach itself. We visited all our favourite restaurants and some lovely new ones. Even my appetite returned to its pre-chemo normal level. For months I could not face a US yoghurt, but the Oikos ones in Portugal were immediately appealing.

 

Even more precious than all of this was the company of loved ones. I have never felt closer to my wife, and we greeted eight close and dear relatives during our stay, enjoying every moment of their company. We also connected with dear friends and neighbours, a joy that had developed during the pandemic and would surely become stronger if and when we moved to Portugal permanently. We did not feel the need to travel around much, but we did enjoy one long-delayed trip to the historic city of Evora.

 

So in many ways our time in Portugal was idyllic, and then came our week in Italy to round off the visit in style. We met old friends in Bologna and closed out the visit with some tourism in Milan, and in between came hours of singing beautiful music with great and talented company in perfect surroundings. I found that I can still sing almost as well as before, and there was pure joy in reconnecting with so many old friends and to make new ones too.

 

I first went on one of these singing courses in 2009 and was immediately enraptured, and thrilled when my wife was able to join and be confident enough to sing. We fully intended to embrace more and more courses once back in Europe, and I even had a dream of becoming involved in the organisation and further development of the concept. This past week I was thrilled to notice that some of the ideas I have previously proposed were taken up by others organically – an after-party is surely a good idea.

 

So there was a lot about this trip that was truly wonderful and we are so blessed to have had the chance to enjoy it while in relatively good health. It was surely the best of times. But why also the worst? That has to come back to all of those tears.

 

I do think that a theme of this visit was mourning our lost anticipated future. We knew that there were no guarantees, but we did hope that we could enjoy many years together relaxing in Portugal, spending time with family and friends, travelling and enjoying hobbies like singing with friends. That is exactly what we have been able to do over the last six weeks, but we know we cannot expect the experience to be repeated very many times, if any. True, we can and should be thankful, and true too, we should try to spend as much time as we can anchored in the present, but I do think that some mourning is reasonable, and even beneficial as a potential route to greater acceptance of our new reality.

 

We also took many practical steps during the visit to prepare for the future for my family. We transferred ownership of the shares for the villa and closed down my personal company that had been the vehicle for managing the rental of the villa. We had healthy conversations, especially involving my wife and daughter, about how things can work in the future and how the family can cooperate to the benefit of everyone. I am delighted that we seemed to agree about most things and made good progress. There are still open questions about upgrading the villa, but these can be resolved in good times. Completing all this administration led to some stress and forced us to face the future more overtly, so some tears were probably inevitable.

 

I believe that the worst part about facing a foreshortened life are the goodbyes. This trip involved many goodbyes. It even involved some creation of legacy in the form of time with my young granddaughter and a professional photoshoot. I fully approve of why my daughter arranged these things. Still, they generate many tears, as we all reflect on the possibility that the goodbyes may turn out to be final ones.

 

We are in a phase where we dare to hope and to make tentative plans for the future, even if our time horizon remains much shorter than it used to be. We have to constantly balance hope with readiness and to include many contingencies in our plans, but overall we are blessed that my health has remained strong enough to warrant a somewhat hopeful approach. Even so, one slightly surprising outcome from this trip, and one that has led to more tears, is a series of reminders that even a hopeful future must involve limitations.

 

The trip made it abundantly plain that I have to be more cautious in my travel ambitions. Even trouble-free travel days left me tired and placed a massive burden on my wife, especially since she is likely to have to do most or all of the driving for some time to come. Our shared capacity to deal with challenges while travelling is reduced. We can hope and even plan to travel in the future, but we must take steps to remove some risks and to keep things simple.

 

Then we should not be surprised at all that a new health complication arose while we were away from the US. Twice I suffered from what appears to be an acute vertigo, which may or may not be a side-effect of the chemo medication. We have to expect these things, prepare for them if at all possible, and minimise the risks involved. Surely we were a little reckless by enjoying a full steak dinner with plenty of wine during a course of chemo pills. The outcome was one I fully deserved and is a good warning for the future.

 

While tearfully suffering the effects of vertigo, fearful of what could be about to happen and of what the new symptom may portend, I also reminded myself of another key lesson. When the attacks happened I felt alone and a long way from home. My salvation was the comfort derived from having my loving wife beside me. I don’t want to spend much of my remaining time on this earth separated from that precious love.

 

So the tears shed during the weeks surrounding this trip have had many causes, but overall they have done more good than harm and they have brought me closer than ever to my wife, and to my family. They have reminded us of valuable lessons and taught us a few new ones. They have allowed us both to make progress on our parallel journeys of grief. And they have not led us to abandon hope, only to indicate some caution in the future.

 

Does this make the trip the worst of times? Certainly not, despite all the goodbyes and reminders and tears. It feels closer to the best of times, a blessing to treasure and to be forever thankful for. I am lucky to have had the opportunity, and even hope of similar trips into the future. For this I owe thanks to my doctors, my family, my friends in Portugal and Italy, and most of all to my wife.   

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!