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.