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.     

Graduation. Now what?

 I reached a milestone this week. The most intense phase of cancer treatment concluded after six long weeks of radiation and oral chemotherapy. I came through it largely unscathed, and it is a wonderful relief to not have to commute for treatment every morning and to feel the nausea sliding away and my appreciation of food return.

 

I find it hard to define distinct phases for this cancer journey, but one characterisation might set the first phase from August to December and all about discovery and diagnosis, and a second phase ending this week all about intense treatment. The third phase, starting now, envisages more of a maintenance level of treatment, with a higher dose of oral chemotherapy but only for five days per month. We can almost describe this as waiting and monitoring and hoping. Still, this is something to celebrate. One person very close to me confided that they feared we would not reach this point, and for sure others had the same thought in their head.

 

In some ways this is a strange form of success. For most projects we define clear, observable, measurable goals and can produce a dashboard to summarise performance. What would that look like for the phase just completed? I believe it would have just two items. Firstly, survive, endure, and maintain functional activity. And secondly, run up a series of zeroes onto the scorecard. The list of zeroes is long and thankfully unblemished. No new or worsening neurological symptoms. No infections, no fevers, and no seizures (apart from those under general anaesthetic). No severe or persistent headaches. No issues with blood where it shouldn’t be or insufficient blood where it should be. No slips or falls or serious loss of balance. No cognitive or motion issues, or scar or scalp damage.

 

I almost feel like Max Scherzer, playing a baseball game where my team has no offence but plays defence every inning. I must pitch a shutout, through the whole game and into extra innings, realising that any scrambled run for the opposition signifies defeat. At least I have the best available defenders and pitching coaches and they have plenty of weapons to stymie the offence of the opposition. At this point the opponents are batting with a bunch of clueless rookies, but we all know that any kid can walk into a perfect swing and that rookies learn and improve.

 

It feels great to see all those zeroes on my imagined Citi Field scoreboard (and perhaps soon I can celebrate seeing some for real once the season starts next month). But, without being in the least bit ungrateful, there is something missing in this game. Where is the offence? We love to see great pitchers, but the real glamour in the game comes from home runs. Everyone can remember that last year Aaron Judge scored a record number of homers, but only the diehards can quote the stats of the Cy Young (pitching) award winners. I am playing in a game where only the opposition can score homers. I can accept that.

 

Another issue crops up now as the intense treatment phase concludes, that that is about our planning horizon. When playing to survive, endure and function, that is the only meaningful horizon. Every plan pointed to reaching the (negative) goals achieved this week. But successful projects have simultaneous goals for multiple time horizons. In business I have generally advocated for three horizons. The shortest looks forward only a couple of weeks and is all about immediate execution. The second horizon plans towards the next project milestone. And the third horizon looks, with less specificity, for progress towards the ultimate successful completion of the project.

 

In my project the intense treatment phase only really included the shortest horizon, and goals of zeroes (and no actions) in the second horizon. That was necessary. But what now? Can we dare to reintroduce a third horizon?

 

Things can go very wrong at any time, but I understand that at this point I have a reasonable shot at a period of several months or even longer of relatively good health. The zeroes are being posted, the great tools to stymie the opposition batters have been applied with apparent success, and even the maintenance tools are pretty good. My tumour chose to be rather docile while it was free to run riot during the diagnostic phase.

 

Yet there is something scary and difficult about reintroducing a longer horizon. Would such thoughts jinx it? Might it result in loss of focus and offer a hanging slider for some opposition rookie to knock out of the ballpark? Or is it a smart thing to do? Projects often fail because they forget the third horizon. What is the point of goals that only survive and endure anyway, leading only to yet more survival and endurance? I don’t have a long bucket list, but at the same time I have no wish to suffer progressive disability and to impose that burden on my loved ones.

 

I am discovering that it is easier to narrow a time focus than to widen it. Smart as ever, my wife has started asking me third horizon questions, usually at six o’clock in the morning. Should we think about moving back to Europe after all? Can she rethink her career goals once again? I cannot yet offer any answers. I am out of practice. There are many new considerations to factor in. I must stay realistic. My team has no offence, and my primary task remains to help prepare my loved ones for the time when the opposition score that home run. All timeframes remain highly uncertain. And I am frightened.

 

So, all being well medically, the coming weeks will involve some new thoughts and new discussions. We would be remiss not to consider the opportunities that those zeroes might be providing us. Perhaps there is a worthy or fascinating project out there that I have never considered. I have not really got into deep thoughts about the meaning of life, but this is the sort of situation where they might emerge.

 

In the meantime, we must remember what has helped us to reach this milestone in a healthy emotional state. However we eventually address the third horizon, we should do it as a unified team, recognising that the fundamental reality is unchanged and that we are on parallel journeys to different destinations. And we have more reason than ever to be thankful.         

How much do I want to know?

 The internet is a wonderful thing. We all have several orders of magnitude of valuable information easily available to us than was the case twenty years ago. I remember when Wikipedia first came out and the traditionalists pooh-poohed it because it contained a few factual errors. Clearly the fact that many of these traditionalists had just lost their snobbery advantage over the rest of us had nothing to do with it. Most of us quickly learned to rely on Wikipedia as a useful source, far more extensive and easy to access than anything we had before, and also learned that if the information we required really needed to be accurate we should find a corroborating source.

 

Then came Google and our available knowledge leapt forward even more quickly. And it seems that now we are on the cusp of yet another transformation as ChatBots mature. If only school curricula had developed at the same pace as our new internet schools, humanity would have been able to advance even more quickly than we have. But many children still labour in classrooms being taught to remember dull facts that a simple click or two would render accessible. Still, we are going forwards.

 

From the start of my illness, I have been torn about how much to use Google and other sources to try to answer questions that I cannot help being curious about. The two biggest one are “how long” and “how (does this type of cancer typically develop)”. So far I have resisted the urge to consult Google, the main reason being that I prefer to trust my doctors. Yet my doctors have steadfastly refused to even hazard guesses for either of the questions.

 

Two sad and related trends in America are involved here. The first is that everyone seems to be a pocket health expert, ready to offer opinions on matters far beyond their education and experience. Partly this is because people do not seem to trust doctors. Partly it is because everybody has a story about how some cancer or other developed in a friend or acquaintance. And partly it is because of Google. They is a lot of rubbish available via the internet, but a lot of reliable material too. The problem is that most of this reliable material is only reliable in the hands of subject matter experts. For some reason that does not seem to give pause for concern or downgrading rash conclusions.

 

The second trend is about litigation. Every third advert on TV (that is not trying to plug some drug) is from an ambulance chasing lawyer, promising riches to anyone who has had an accident of any kind. Doctors and hospitals are among the primary targets of these unscrupulous lawyers, and that has consequences for how hospitals judge risks, how doctors are required to behave and communicate, and how typical people struggle to trust doctors. Even if we can trust them, in many cases we will be quick to sue them if the opportunity arises. It is no wonder that the health care system becomes so expensive when litigation is among the largest cost categories of physicians and litigation risk is so big that professionals have to pool together to share the risk, and then those pooled operations ramp up their margins to offset the risk and because their competition is reduced.

 

One consequence of not fully trusting our doctors is a rebound to our emotions. If we might want to sue we listen to stories from anyone and Google anything. This makes us more fearful than we might be and perhaps more angry too. I think one of the best decisions we made at the beginning of this journey was to follow a different path, one that prioritised our emotional well-being and especially looked to move past anger. I guess if a doctor cuts off the wrong side of my brain then my wife might sue, but that prospect is a long way from our everyday thoughts, and I believe that to be a good thing.

 

Still, on balance I would prefer to know the answers to the big two questions and to others as well. Perhaps it is partly because of the distrustful culture here, but so far we have been given no answers at all. I prefer to trust my doctors and ascribe the reluctance to answer the questions to what they tell me, which is that every case is unique and averages are almost meaningless.

 

I could push back harder, and perhaps in the future I will. I believe I have one reasonable justification. I know nothing about medicine, but I am a mathematician, one who specialised in the applicable aspects including probability and distributions, and so I do understand averages, and in my case I could interpret some types of information so that they really are not so meaningless after all. The doctors should feel free to push back again, quoting medical differences between cases that potentially undermine lazy averages even further, but I believe I am qualified to have that discussion.

 

What I will not do is consult Google. For one thing I am not very good at that type of research. For another I don’t trust myself to stay objective on a subject so critical – my analysis is too likely to be flawed. And for another I would need to find studies that reduced the medical aspects to language I could understand (and therefore are strictly limited to cancers very like my own) but sophisticated in their mathematical analysis.

 

I have found a few good proxies. My sister knows a little bit about medicine, a bit about statistics and a lot about internet research. She also is a good judge of what it is healthy for me to know and how to communicate it. I am lucky to have her on my side because I believe such a combination of skills to be rare. My daughter and my wife can also both add to the skill set so can be even better as a team. It is good that MSK allows family to listen in to meetings, so we can all hear opinions first hand.

 

I also realise that I must be careful what and how I ask questions. The quality of communication among the medical professionals I have encountered has been mixed. Some have strayed beyond their competence and others have been thoughtless in how they share information. At one point a rather junior nurse started reading out to me the technical results of an MRI, something that neither of us could interpret reliably but could do a lot of damage to my emotional state. I managed to stop her in time and made a resolution to be alert for that situation again.

 

By contrast, both my surgeons and both my neurologists have been excellent communicators, clear and open and straightforward. I have been able to interpret when they have resorted to code (“sometimes we are looking at years, and sometimes months”). The only issue is the rush to hide behind the claim that cases are so different rather than attempt to give an answer. And on balance I trust that this reluctance is usually reasonable and in my own interest.

 

But this may change once genuine trade-offs enter the equation. So far, all the major decisions in the process have been very clear and well-explained. Any risks we have taken and discomfort I have suffered have been far outweighed by potential benefits. That may be different later, and especially if there are potential gaps between the preferences of me and of my family. Then the doctors will really need to use their skills, and I hope they can avoid being constrained by the US cultural constraints. And we will also have had to think through our own preferences. What do I really want to know?

 

I think I know the answer for myself, though that may change as the disease evolves and I understand we should agree as a family. We have doctors we can trust for the medical wisdom, communication skills and hopefully also their ability to interpret probabilities. I would like to know everything possible from these people. From Google, or interns, or people with anecdotes, thanks but no thanks. 

Tips During Treatment

Before I was diagnosed last year, I knew very little about the practical aspects of cancer. I had seen a few acquaintances afflicted by different forms of the disease, but somehow their experience had always been at a distance from me. Probably I was not curious or empathetic enough, but I sense also that people tended not to talk about their experience very easily.

 

Now I am in the heart of a treatment program. I always knew that cancer came in many forms and followed many paths. I may be unusual in being rather functional during treatment, but I don’t know that really. I don’t even have much idea how my own cancer is likely to develop, but I certainly have picked up a few tips that seem to work for me, and which could also be helpful to carers.

 

I am more than halfway through an intense six-week course of oral chemotherapy and radiation therapy. The chemotherapy is a nightly pill, and it seems very general and untargeted, probably because anything else for the brain may not be feasible. The radiotherapy involves a daily trip to a facility and is surely very targeted. The facility has rooms dedicated to different types of cancer. I lie on a slab and both the slab and the machine above it can be rotated so that the radiation is applied as precisely as possible. I also wear a personalised mask, more like a cage, that was made for me when this started. It is tight and I can imagine is a problem for anyone with claustrophobia, but I have no real trouble with lying still for extended periods.

 

My clinic appointments tend to be early in the morning. I grab a cup of tea and something quick like a banana or a yoghurt, take my morning medication and get out of the door like a commuter. I will usually have a little nausea on my commute, but nothing too unpleasant. I walk for five minutes to the subway, then take the F train for four express stops to 63^rd and Lex in Manhattan, then walk two avenues and four streets to the MSK facility.

 

My only persistent symptom so far is a serious loss of peripheral vision on my left side. The operation to remove the tumour just before Christmas made this a lot worse (I am not complaining, it was a fair trade). It has just started to show a bit of improvement, with double vision largely absent now, but the symptom is hugely frustrating, even though by now I can get around without bumping into two many people or objects or speeding cars. I can also read, which helps pass the time in waiting rooms. Luckily this is not usually too long, as all medical facilities tend to run closer to schedule early in the morning.

 

On Fridays I hang around to have blood taken at their lab, and on Tuesdays I meet the lead radiation doctor and his nurse so they can check how things are going, give me tips and sometimes alter the medication regime. Every three weeks I meet the doctor and nurse leading my overall treatment, and my therapy appointment is also every three weeks. Occasionally I have additional appointments for scans like an MRI. Otherwise the rest of the day is my own.

 

I have other pills to take during the day, and then I finish the day with an anti-nausea pill followed by the oral chemo pill just before sleeping, both of which work better on an empty stomach. One tip I can pass on is to ask the nurses about the best time of day to take all the medication. Sometimes a time is mandated and will appear on the pill bottle, but it seems that almost all pills have some side-effect risks and these are minimised by choosing a particular time of day, and the nurses have lots of experience to help if I remember to ask.

 

It is common that one pill is prescribed mainly to counter the ill-effects of another pill, and this is another area worthy of discussion with medical staff. They will often prescribe steroids, and in some situations these are essential, but all my MSK team know by now that I tend to react strongly to steroids and share my wish to avoid them if we can. But the trade-off may be some further temporary worsening of the eyesight, or more fatigue and nausea. Another trade-off for me is between anti-nausea pills and stool softeners, and I am currently in a mindset to put up with the nausea to avoid too much constipation. 

 

So far nausea has been my main problem. It tends to rise during the afternoons, and it depends on the medication for each day and other random factors. I suspect it is a bit like being pregnant, though I have managed to avoid any vomiting so far. I have reverse food cravings, in that stuff I normally love, notably rich and sweet foods, make me feel sick just to contemplate. So I restrict myself mainly to simpler foods such as starches with some meat and fruits. I don’t fully understand the reason, but while on radiation I have to avoid many foods that normally I would consider very healthy, such as vitamin supplements or blueberries.

 

I think I have found something of an antidote to nausea, and that is to eat. It feels counter-intuitive, because I don’t taste well and my mind tells me that if I eat then I will probably soon vomit, but I have learned that, at least for me, I can keep stuff down and that eating enough reduces the nausea.

 

In a similar way, another antidote to both nausea and lethargy is activity. If I can distract myself by doing stuff then I am les likely just to sit around and feel sorry for myself and allow the nausea to grow and the sleepiness to progress beyond occasional healthy naps. While I am doing something else, something even as mundane as the washing and ironing, then I don’t have time to feel too nauseous. I guess this would not work for everyone, and activity has to be balanced against risks of falls or seizures and other serious complications, but I am certainly finding it helpful to push myself a bit. I have choir rehearsals three weeknights per week, two of them in Manhattan, and the doctor has allowed me to start swimming again. I usually have an activity to look forward to do, and that also avoids the problem of dragging days and helps the impression of approaching the finish line of the treatment.

 

For me, independence is also a benefit, because that supports more activity and gives me confidence that I can do more, and safely. There is a trade-off here with the doctors and nurses, who are understandably risk-averse, but also with my wife. I have willingly allowed my wife to put a tracker in my wallet and to agree to send texts every time I reach the end of a journey, as a fair cost of the independence she allows and I value. 

 

Another tip is to prepare for the sessions with doctors and nurses. There are only so many scans they can afford and live tests they can carry out, so they must rely on my self-assessment, especially for things like the eyesight impediment. Last week I did not really prepare for a session, and it was a frustrating day for my vision, so I reported a deterioration, which I was lucky did not land me on steroids. I made a point of more rigorous self-assessment of the next couple of days and was able to conclude that the double vision had stopped and to pass this good news on to the nurse.

 

A last tip is to try hard to care for my carers, especially my wife. It is too easy to fall into a self-pitying mindset, and a good carer will willingly concur that this is all about me. But it isn’t; in many ways it is just as hard for her. The wallet tracker is an example of something that is easy to concede, but there are other areas too. I don’t fancy food so going to a restaurant does not currently have much appeal to me, but I should try to think about her desires as well.  It all helps her to help me, and tends to reduce my nausea as well.

 

I won’t pretend that my treatment is any fun, but as usual it is not hard to find reasons to be thankful. I am lucky that the treatment has an end date to count down towards. I am able to hold down my food and my medication. The daily misery on the slab is over in twenty minutes, and I can imagine plenty of Bach or other music to help the time seem to go faster. I am able to be independent and to stay active. I have the best medical care and the best care at home. The gospels from the last three Sundays have been relevant and inspiring. Thankfulness is always a great antidote.            

Patience, Patients

 A full six months after noticing something strange with my eyesight and after three spells in hospitals including surgeries, I am finally into a treatment regime for my brain cancer. For six weeks I must take a nightly pill, full of gunk toxic enough to destroy cancer cells but then necessarily attacking my body so that nausea sometimes arrives despite my anti-nausea pill. On the weekdays of the same six weeks I commute into the city to spend fifteen minutes lying on a machine that dispenses different gunk, this time radioactive gunk, into my brain. This part of the treatment has been fairly easy so far but is seemingly cumulative in its effect, so I can expect increasing fatigue and perhaps further worsening of my vision, hopefully temporary and not combined with anything new and even more foreboding.

 

Perhaps six weeks is chosen by the medical fraternity as a period short enough to allow the gunk to do its work before worse things happen inside me, and a period of time I can be patient enough to endure while envisioning an end and retaining hope. So far it seems to be working.

 

This phase has allowed me to observe more of my fellow patients and to assess their attitudes in case they might help me a bit. The hospital stays were so frantic that I did not really form any bond with fellow patients, and I suspect that is by design. The problem with cancer is that most of us do not recover. If you are running a maternity ward you want the expectant mums to bond, in order to share practical experiences of what works, to build strength together and perhaps even to create friendships that can be fruitful after the hospital experience. Only if things go terribly wrong would you want to maintain a distance. If your ward was for people with broken limbs, you would also encourage companionship, sure in the knowledge that while recovery can be slow and painful, there is at least a positive end point that most can reach and which might be reached more quickly with some optimism and teamwork.

 

My cancer wards were very different. We kept being moved about and I got the sense that interaction between patients was not encouraged. The design of the wards even seemed to discourage families from any interaction with each other. Perhaps the ward staff have learned that this is the best way to keep the atmosphere from being too negative.

 

It is the same at the radiation clinic. The treatment rooms are individual and spaced well apart, and my clinic is well managed so that the time in the waiting room each day is mercifully short. But I do observe fellow patients, and nobody seems inclined to start a conversation. That might be just as well. Some people are clearly angry and suffering pain; striking up a friendship with those folk would probably benefit nobody, even in the unlikely event that the other party was in a mood for chatter.

 

Instead, most of us choose an attitude of stoic patience. This is something we must endure so we do it on autopilot, much like an unwelcome wait in a crowded departure lounge. Try to be kind to the staff, who are only doing their best in a situation that is no fun for them either. Don’t think too hard about outcomes or become obsessed with things we could complain about, because such thoughts and actions will only prolong the experience and make it less pleasant. No, stoic patience works best, with some distraction like a book to read, and gratitude when waiting times usually turn out to be short. I have been lucky enough so far to have felt well enough to visit the clinic unaccompanied, and I notice that the carers of those less fortunate tend to collude in creating the same stoic and untalkative atmosphere.

 

This observation lies behind what I have some hope may become another turning point for me. This stoic patience may be necessary for a time but it might be overrated, and a bit of balancing impatience might be effective. I don’t mean the impatience from anger or blaming or complaining. I mean the impatience that can lead to minor triumphs and some positive hope. I believe that this has to start with the patient because, for all their kindness and wonderful intentions, the stories and cheerleading of friends and family do not create a lot of hope, at least for me.

 

Here, the dreaded steroids can be an asset. While drugged up, I had no problem with getting things done and facing the future openly and being impatient. After my last operation, I was placed on a huge dose of steroids (no doubt necessarily), and I woke up on Christmas Eve determined to get out of the place. With some smart collusion from my wife, some obnoxious tactics on my own part, and the luck that the time of year must have given some incentive to the staff, it worked and I was discharged, and I am sure that this accelerated my recovery. In the hospital they were talking about sending me for days to an inpatient physical therapy clinic, and I am sure that would have been counterproductive.

 

I am aware that I am taking calculated risks – with my compromised vision I could surely bump into something damaging or even fall – but I am also convinced that I have to live my life as fully as I can, even during treatment. That involves some impatience, with my wife as well as the medical staff, though I am aware that there is a limit and in many situations caution and patience make sense. But I have been steroid-free for a month now, so I know that it is sane me not mad me making these judgements.

 

On Saturday night we visited friends for a meal at their apartment and met their new baby. We did not shy away from talking about cancer, but we also did not let it dominate the evening (the baby helped with that). We were lucky in that my nausea was not too bad. The overall effect of the evening was to change the subject from endurance of treatment, and that provided a way to envisage a time where the treatment was no longer the point of existence. Yesterday morning I sat at the start of mass and suddenly felt a peaceful happiness coursing through my body. This was not the steroid-fed happiness of yore but something more useful. It was hope.

 

The hope is realistic – I am highly unlikely to be cured and any period that we can enjoy of healthy happiness will probably not last all that long. But now I can envision that period and be hopeful that it can arrive, maybe soon after the end of the current burst of treatment. I am happy that my wife is showing such courage and practical sense. I am thankful that I can still sing and have friends who are willing to sing with me. I can still read, even when my eyesight is at its worst. In four more weeks the cycle of treatment will end and I am hopeful I can endure that period without too much misery. Of course there are no guarantees, and part of the stoic patient attitude is about being prepared for setbacks.

 

So patience is very much a balancing act for patients and their carers. Angry impatience only makes things worse, and a certain stoicism and reluctance to socialise with fellow sufferers is probably a good defence against negative thoughts and builds some ability to accept inevitable setbacks. But an attitude dominated by patience can become self-fulfilling as well, and we can drift into a life whose only purpose can become being a patient patient. Some impatience, helped by drugs if necessary but even better without artificial help, can point to a hopeful path forward that can be believed in. Realistic but hopeful goals can offer energy and make attainment more likely too.

 

I hope I am striking this balance in a way that can be effective for me to give the best shot at some fruitful months ahead. On our parallel journeys to separate destinations, that must be a challenge for my wife too. It might be one advantage of having a care quarterback too, because he can see the whole picture and communicate a storyline that balances hope and realism. It is a source of comfort that he explicitly supports our goal of achieving a trip to Europe later in the spring. I hope that can happen, while keeping some reserves of stoic patience in the tank in case of setbacks.