Second Chancers

 As my cancer journey seems set to enter yet another new phase, I have become fascinated by the idea of a second chance at life. I try to be careful not to leap too far into optimism, but for sure each time I see the oncologist he sounds more and more positive, so perhaps I could be lucky enough to enjoy significantly more time on this planet before the cancer returns. A year ago, we were unwilling to plan more than a week or two in advance, but now we seem comfortable thinking ahead a whole year or even longer. Does that make me a cancer survivor, or like somebody who has recovered from a near death experience? Probably not yet, and maybe not ever, but I have found it an interesting concept to explore.

 

I have but one more chemotherapy cycle to endure in this phase of treatment, in the middle of March. Then an MRI early in April will be followed by another appointment with the oncologist. He tells me that if all remains clear then treatment will not just taper, it will essentially stop. We would move to monitoring only, still with MRI’s but at a lower frequency, and with no special medication. Being able to say goodbye to nausea, fatigue and loss of appetite, not to mention regular lab trips, would certainly warrant a celebration, and was beyond my wildest dreams not so long ago.

 

I had assumed that the period after treatment stopped might be especially dangerous. Once we stopped zapping at the cancer remnants, it felt like giving it an open invitation to return with a vengeance. But the oncologist told us that this was not really the case. Of course, I will always run heightened risks compared with somebody who has never had a glioma, but these risks are not as high as I might think and not especially high in the period after the end of treatment.

 

So, once I felt better after last week’s chemo, I started researching topics life cancer and near-death survivors. From the beginning I have been curious about how cancer may have changed me, partly to give me an opportunity to understand and perhaps remedy any unconscious imposition my behaviour may be imposing on loved ones. Reading a few articles and short research papers, there do indeed seem to be some common themes for how people change, and I find that a lot of these resonate with my own feelings.

 

What has become a seminal paper about second chancers identified nine values or attitudes that appeared significantly more prevalent among the survivor group than the general population, based on a detailed questionnaire completed by many study participants. The second chancers declared a greater appreciation for life, and a higher level of self-acceptance. They felt that they demonstrated a greater level of concern for others but less interest in worldly achievement for themselves, and showed a higher level of engagement of planetary and social affairs. They followed a life quest or search for purpose more intensely, and demonstrated higher levels of both spirituality and religiosity. Finally the second chancer group showed what the study termed a higher appreciation of death, which I took to mean that they were prepared to contemplate death rather than demonstrate avoidance of the topic, and that they may have reached a level of acceptance and peace about its inevitability and certain randomness about when it might occur.

 

I found this list fascinating, and it led me down various rabbit holes. The first was to attempt some sort of self-assessment. Lo and behold, I think that I would fit the second chancer profile quite closely overall, and more closely than I would have before my cancer diagnosis. I think I have learned to live more in the present, to appreciate life and its awesomeness and to accept my own fate, trivial in the wider picture but still powerful. I think I am marginally more concerned for others than previously, even if kindness remains a challenge for me. I feel I already had some maturity of opinion when it comes to spiritual and religious matters, and these positions may have deepened somewhat. Appreciation of death certainly fits the new me very well. Worldly achievement has not mattered a lot to me for some time now. I do find myself searching for purpose a bit more than previously. The only one from the list why I feel myself moving in the opposite direction is my engagement in wider society, which I something I consciously try to disengage from now, especially living in the USA in 2024.

 

If I am indeed a good fit for the second chancer profile, what does this imply? I cannot really even claim to be second chancer yet, so soon after diagnosis. But perhaps the fit implies that I have made good emotional progress in accepting my situation and making the best of it. That emotional analysis we were sucked into at the start may have worked wonders after all, and this sort of self-analysis might be helping too. I have certainly been lucky in my wider life situation, especially the existence of strong relationships in my life.

 

I do sense that most of the attitudes on the second chancer list are healthy ones. That led me to second study, which examined how this same list of attributes changed over time. If this list characterises second chancers after ten years, does it still hold true after twenty? The answer from the second study was a resounding yes. Eight of the nine descriptions still hold, equally strongly. The only exception is the engagement in societal causes, which seems to diminish over time, compared with a control group. I noted smugly how this was the one attribute that did not apply to me, at least in my self-assessment. Does that make me, a second chance rookie, more typical of a twenty-year veteran survivor than a ten-year one? That seems to be the case. It probably means nothing at all, but I can’t think of any interpretation that would be anything but positive.

 

Does fitting the survivor profile make longer survival more likely? That is a complex statistical question, but it does feel possible. If it is true, does it make the profile a valid goal for therapy, whether self-therapy or the professional kind? And if so, the value could accrue to anyone, so why wait for a near-death experience? Again, that feels possible, even if some of the attributes feel like outputs rather than inputs, and therefore not things we can work on. As an example of this, it seems to be accepted that maintaining a positive attitude helps one face cancer, but there is no point in telling somebody to have a positive attitude, since that attitude is a result of many inputs, several of which we cannot control. Telling me to have a positive attitude is about as helpful as telling me to sing without vibrato – I can acknowledge the goals but lack the tools to achieve them.

My last rabbit hole was to compare the theory with my own anecdotal evidence. It has surprised me how many of the people who have reached out to me and piqued my interest since my diagnosis are second chancers themselves or are very close to one. I hear many personal stories nowadays. Some I follow with only a shallow interest, such as the ubiquitous tales of grannies who smoked like chimneys but lived to ripe old ages, and the tales that claim miracles or divine intervention. But I feel privileged to have become privy to some of the other stories, and I have frequently been moved by them. And the purveyors of such stories do generally seem to fit the survivor profile from the studies.

 

That leads me to one more tentative but optimistic conclusion. Survivors, and others sharing the second chancer profile, do seem to be interesting people, people who can make my own life richer. If I manage to graduate out of the rookie class, I can only assume that I am likely to come across more such people and more of their interesting revelations. That is yet one more reason to celebrate.  

A Fishy Take on Morbidity

 I find myself rather short of inspiration this morning. I realised I have not posted on this blog for a while so thought it was time to put something out there. After all, I have started experiencing people equating silence with probable death or incapacity. I met somebody in the street the other day. We were chatting away in a rather strained manner when after a couple of minutes she paused before rather ruefully sharing “you know, I thought you were dead”. I laughed and succeeded in removing any embarrassment, because I could fully understand her train of thought. She had no doubt seen my name on a prayer list and heard about my cancer somehow, but then heard nothing else for some months afterwards.

 

It is not unnatural to draw a morbid conclusion. I expect there are many others wandering the streets ready to be surprised in the same way. So at least I owe some regularity of posting for those that dip into my blog. I suppose it is a bit like climbing onto the roof of our apartment building once per month and shouting “I’m still here!”

 

I find it to be a good thing to be running out of inspiration for writing about a cancer journey, because it shows that the journey must be in a somewhat monotonous phase. In this situation no news is certainly good news. My health is rather stable. I notice that fewer people treat me like an invalid these days. My wife does not try to stop me doing the chores anymore, and even forgets sometimes to remind me to send her frequent “still alive” updates when I am moving about. At one point last year I shared with my therapist that the context of cancer invaded “every waking thought”, and at the time that felt accurate. It can only be good that some of my thoughts are now liberated from that context.

 

Part of that liberation is to find the motivation top tackle longer term projects. A good example is learning Portuguese. Ever since we have had plans to live there I have had a goal of learning the language, and a few months before my diagnosis I found an excellent website and started devoting a few hours per week to study. In October 2022 that habit stopped with a thud. Why work on such a tough project when I wasn’t going to live to obtain any reward for my effort? But after nine months or so I found myself drawn back to the website, and now I am back at full speed. Perhaps I will not get much opportunity to hone my new skill in Portugal itself, but perhaps I will. The idea no longer seems so futile.

 

So it is refreshing to notice that “every waking thought” no longer seems to apply. But it would be dishonest to claim that I am going about my life as free as a bird, even while I am feeling well. I am still prone to weird outbursts of tearfulness, though these do come and go, and their causes vary between fear, awe and thankfulness. I also find myself prone to cancer related musing, often while lying in bed.

 

Inevitably, much of this musing is about the two big questions that I understand my oncologists to be reluctant to speculate about. “How long do I have?” and “How is it likely to develop?” are frequently in my head. I know there is no good answer to either question, and I generally succeed in not asking them, and also not to research them on google either. But that is not enough to stop my mind from going to those places.

 

I carry two statistics around in my head. One is that the median survival time after a glioma diagnosis is between twelve and eighteen months. The other is that the survival rate after five years is less than ten percent. I am pretty sure that these are both accurate and relevant. Sometimes I share them with people who make the opposite mistake to those who think I must be dead already. These well-meaning people speculate that I am fully cured or soon will be, and sometimes I can’t help myself from correcting them.

 

I am now quite close to powering through the benchmark in my first statistic, it being sixteen months since diagnosis. One musing that has bedevilled me lately is how the life expectancy changes over time. Having got to eighteen months, am I now especially likely to keel over at a moment’s notice? Or is my life expectancy now another twelve to eighteen months from here? Or perhaps even longer?

 

Of course it is really a dumb question, since every case really is different. I won’t annoy my oncologist by asking him to speculate. There are a million factors in play. The initial median obscures a host of factors, and any renewed estimate would as well. How am I feeling? How is the rest of my health, including my mental health? Did I ever smoke? Is my heart in good shape? How effective is the care I receive at home? Will the infection reappear? Are the other symptoms merely annoying side effects, or might one become life threatening?

 

Despite all this, I could not stop myself with coming up with a theory. My hypothesis is that, so long as I feel as well as I did at the time of diagnosis, my life expectancy is probably still about twelve to eighteen months. If I still feel this well twelve months from now, I can hope for another twelve to eighteen months after that. And so on.

 

Ever the mathematician, this model has aspects related to a distribution called Poisson, named after a fishy Frenchman. We learned about Poisson distributions at school. They are quite elegant and good for problem solving and embedding some calculus concepts.

 

The example my teachers at school used to explain Poisson was waiting for a bus or a subway. It only works in a busy city where at busy times the published timetable is rather meaningless, and so the busses (buses?) turn up at rather random intervals from each other. I experience this while waiting for the Q60 bus or E or F subway trains in the evening. No matter how long you have waited already, the expected time until a bus arrives remains the same, always starting from now. If the average waiting time upon arrival at the stop was four minutes, you can still expect to wait four more minutes on average fifteen minutes later, whether no bus or six busses have passed in the interim. That is one of many interesting features of a Poisson distribution.

 

Might Monsieur Poisson have something to say about my current life expectancy (and by the way, everybody else’s too)? I suspect that he might. The features of a developing cancer will indeed follow some sort of independent pattern, like a phalanx of busses. I can even incorporate my second statistic, since a Poisson distribution with a mean (or is it median? I think it might be both) of fifteen months would indeed offer a probability of something less than ten percent of surviving five years or longer. But I can reset that five year probability now as well, starting from today. And I can again next month, so long as nothing else in my condition has changed.

 

I suppose this all rather pointless, even if my theory has some validity. But I share it as an example of the sort of musing that goes through the head of somebody with a condition like mine, perhaps while waiting for a bus. It is rather good for morale to be able to continually reset the mental clock, and to give some justification to such thoughts via reference to a fishy Frenchman.

 

And, pointless and even dumb as it is, such musings are probably rather more meaningful than clambering onto the roof to shout that I am not yet dead. Or cured.