The Best and Worst of Cancer

 Cancer stinks, as does any serious illness. We can find reasons to be thankful but can’t gloss over the bald facts. Losing thirty years of healthy life expectancy overnight, coming to terms with likely disability and what that imposes on those we love, and facing up to death and its impact on those we love; these are not positive experiences. Some have it better – some cancers offer a better prospect of full cure or long-term remission than mine. And some have it worse – the quality of life for many is destroyed by a catastrophic event as the first revelation of a cancer. Other serious diseases might be easier or harder for most sufferers. Surely any serious disease is worse for younger patients and for those who must care for them. But there seems little point in trying to place myself in a league table of misery: I can just accept that it stinks, and it has happened to me as it could happen to anyone, and then get on with making the best of it.

 

Trying to understand, accept, adapt, and potentially help others could be to try to articulate the best and the worst aspects of what I am experiencing. That might even help others to help me. All emotions are magnified in such an extreme situation, so it is not hard to identify the highlights and the lowlights.

 

Top of the best bits must be the torrent of love, care and kindness. I have been constantly surprised and delighted by the support of fellow humans. It has made a difference – it does make me cry, but more often it brings hope, joy and peace. People are always bringing food. People I do not know well are sending e-mails every month to check up on me. Others are praying and praying and praying. Many offer help and are always willing to provide it, including help for my wife, which is just a necessary and just as comforting to me. There is goodness in humanity, and that has never been so apparent to me.

 

On the negative side, the worst experiences are the goodbyes. If I sing in a concert with a group, I cannot help but wonder if that will be the last time, and I can feel others thinking the same as they share a hug. Phone calls are always coloured by the acceptance that subsequent calls might be in very different circumstances. Most obviously and most tough, whenever somebody I value visits us, we have to navigate the moment when they leave, and those events at the airport are the worst. We are both thinking the same thing but trying to convince each other and ourselves that things will work out fine and that we will meet again. Memories come flooding back and emotions run high. We do not know how best to handle the moment. I have a sense that doing it quickly and keeping it simple is the smartest policy, but the tears still flow afterwards.

 

Next on the positive side are moments of sublime bliss. I expect these to become more common as things become more acute. I had a strong one a couple of Sundays ago while singing a beautiful piece of music with a wonderful and talented group of friends that I feel privileged to be a part of. As we moved towards a cadence, I was overwhelmed by a feeling that if God (or whoever) were to take me now, I would depart this world happily. Many tears followed, but I the sense of the prospect of a perfect legacy and closure remained. Such an experience probably does not need Mozart to be involved – a hug with a son or daughter or life partner might be enough.

 

Some of the hardest times so far have been implementing necessary preparations for possible early death. Around the time of my first biopsy, I tried to put financial affairs in as much order as I could and afterwards I used the steroid energy boost to do a more thorough job. I have had tough but necessary conversations with loved ones. This week I visited a funeral director together with my wife, which was one of the weirdest experiences I remember. All this stuff is a harsh reminder of reality, both in terms of what I face myself and also of the tough times ahead for those I love. We have to do it, and we will do a better job if we help each other, but that comforting thought does not make the experience any easier to endure.

 

Another positive consequence of my cancer has been the deepening of the relationship with my life partner. Each day we have an opportunity to be closer than we have ever been before, and the times we have together feel more and more precious. I cannot imagine the state I would be in by now without the benefit of a loving partnership, and perhaps I can offer something of lasting value to her as well. We are thrown into a situation where we can work as a team but must prepare for very different futures. So far that has brought out the best in each of us, and that is precious indeed.

 

On the negative side, I fear progressive disability. Each time there is a setback, I cannot resist projecting it forwards as a trend and imagining what that would entail. I am fully aware that some negative symptoms are temporary, a result of a bad day or of a particular treatment, and sometimes things can reasonably be expected to recover. But no matter how much I remind myself of this and try to accept the current reality, my thoughts drift to the prospect of further decline, and those thoughts make me sad and fearful and make it harder to be joyful and thankful. The last operation made my vision symptoms worse, and it is possible that things might stabilise at this level or even get better again. Somehow I can accept and adapt to things as they are, and that is a helpful attitude, but what if things became even worse, as of course they might?

 

Back to the positive side, it is much easier now to cherish every healthy day and its benefits. Yesterday I felt rough, but today I feel good again, and my morning coffee gave me untold pleasure as a consequence. I can cherish the happy weekends that we enjoyed in November and December, and hopefully there will be more to come. There is little danger now of taking any of this joy for granted and reducing that joy as an inevitable consequence. I bet you did not enjoy today’s coffee as much as I did!

 

Back to the negative, smaller failures that I don’t anticipate linger in my thoughts. I can accept that I cannot drive, and even that I may never be safe to drive again. But I have come to realise the same vision issue means that I have a tendency to misplace things and to find it harder to retrieve them afterwards. Things like that frustrate me terribly and stay in my thoughts. Today I succeeded in cutting my toenails, but it was not a good job and left more work for my wife in tidying up the nails that ended up on the floor that I could not recover. Not only have I lost a skill, but I have imposed yet more burden on my wife. That recurring thought is difficult to suppress.

 

I could continue these lists, and perhaps will do so next time. On the positive side, I can really appreciate renewed relationships. I can also find joy in radical simplification, especially when I know I am making the future easier for loved ones, and also when by stepping back and getting out of the way I can give opportunity to others who deserve it and will probably do a better job than I did. On the negative side, I can regret being sharp with others, and not appreciating the skill and attitude of medical professionals enough. It is also very saddening when I see the suffering of other patients, especially when anger creeps in and the suffering extends to their relationships with others.

The Momentum of Small Defeats and Small Victories

 Momentum is a powerful concept in many contexts. It is interesting because it is a rare combination of analytical logic and of emotion, and sometimes it is hard to work out which of those is more influential in driving outcomes. Even if we think we are logical people, we would be wise to account for the emotional side of the concept and to try to make it work in our favour.

 

Sports pundits love to explain trends as a result of momentum. Every team is capable of an unusually good run of results or an unusually bad sequence. Often the result of a particular game can seem almost inevitable, even if that means the team with less talent and even the one lying lower in the table is the one predestined to succeed. Very often this result is exactly what happens.

 

The pundits quote a variety of factors when they make such predictions. The betting markets often support the predictions, and they certainly know what they are doing. Some of the factors are specific and logical. One team may have several injured players or may be missing their most important player due to injury or poor form. There may be something about a matchup between these two teams, or a historic rivalry which gives a psychological advantage to one or the other. But these logical factors are usually balanced by emotional ones. Somehow the confidence from the pundits or fans or coaches translates into extra belief among the players, and that extra belief becomes confidence and enhances performance.

 

There is cause and effect at work here. Perhaps the confidence of the team comes first and is picked up on by the pundits and others, or perhaps it is the other way around or some combination. But I have witnessed it from both ends. There are times when I just my sports teams are going to win, and other times when I am pretty sure they will lose, and my expectation comes from more than logical analysis. When I used to play golf, there were times when I just knew that my shot would fly down the fairway and other times when I knew that was not going to happen, and confidence, or momentum, or emotional belief, played a big part.

 

I have also witnessed confidence sliding into complacency. There was often a moment when playing a bridge tournament that things were going so well that my mind wandered into a glorious future of winning the whole event. Invariably the outcome was a complete collapse. Momentum and confidence are our friends until they become our downfall.

 

I have experienced more momentum, both positive and negative aspects, since I have fallen ill. I believe health has a lot to do with momentum, and that means that attitude as well as logic or symptoms or context can have an influence. I recall falling sick one summer before the pandemic, initially just from a minor slip on a wet path leading to some pain and limping. That got into my head, and soon I had a cold and more pain and lots of other lingering symptoms which took several months to clear up. Somehow an attitude of sickness seeped into my whole being and became self-fulfilling.

 

I see the same thing at the nursing home for old people where we volunteer. The residents are most vulnerable when they first arrive. Often they are not terribly sick, but somebody has decided it is time for them to require residential care. But this mental defeat and the transition that follows is a mental burden that leads to poor outcomes. The new resident rebels against the loss of freedom, slides into a bad mood, decides that the wonderful nuns are part of a conspiracy against them and that the other residents are horrible or annoying, and all of this leads to difficulties in adjusting. In too many cases, the resident never really becomes happy in the home, and drift into a pattern of physical and emotional sickness that can lead to a premature death.

 

It is sad when we observe this, and we put extra effort into trying to befriend and help these new residents, seeking to turn their minds from a negative to a positive cycle. Our impact is very marginal, but all of the nuns and many of the other residents are wonderful at achieving this. One key is to try to encourage the new resident to experience thankfulness. Another is to emphasise things that are going well, so the new resident has some triumphs to dwell on as well as the inevitable defeats.

 

This attitude shift has been a bigger element in my own recent journey than I care to admit, as someone who usually prides himself on his dispassionate logical approach to life. In the recovery from the operation on December 22^nd, I did not have excess pain or headaches, but I still found myself facing negative momentum and its implications.

 

The starting point for the negative momentum is the worsened optical symptoms I am facing. The surgeon told me it would happen and that I would not have seen much improvement by now but it still frustrating and sometimes makes me fearful of how life would be if things got worse.

 

It is the secondary effects of the reduced vision that I was not expecting and that have affected my mood. I can accept misreading words or some sight-reading errors or sports being slower on the TV, and I think I could accept a long period of not being safe to drive. I can be thankful that I can move about independently and have the discipline to take a bit more time or look out crossing the road or if there are steps to navigate.

 

But I get so frustrated when I lose things and cannot easily find them. I let the loss of a black notebook become an obsession last week, even though I eventually found it. The notebook is not as critical as my head made it out to be. I might have lost it because I am more careless or because I am not seeing into certain types of spaces as well as before, or because other people are compensating for my untidiness by moving things around more often. But I am used to not losing such things, or to finding them immediately if I do lose them. It feels like a defeat when the loss feels permanent, or stupid, or indicative of something more disabling. And defeats make me fear and expect other defeats, and that attitude make further defeats more likely.

 

There are other small changes that are a result of the vision issues but which I magnify into bigger problems than they are. I am messier with food, which is embarrassing and means I have to wash clothes more and puts more strain on others. I don’t know if the eyesight has anything to do with it, but bladder control is more difficult, and that is even more frustrating and embarrassing.

 

Over the last week or two I have started to turn the momentum around. This has several elements. One aspect is real progress, as I feel better and have had long enough away from steroids for their impact to have disappeared. I think I have been smart in challenging myself to create a list of small victories to balance the defeats, and to keep a mental note of such victories so I do not mentally let the defeats overshadow them. Being thankful for the victories and the capabilities I have retained that are not comprised is helpful. Those I love have helped too, by staying positive, pointing out how trivial many of the defeats really are and by building up the victories.

 

Sometimes defeats are real, serious, and portend further defeats. But usually a run of negative momentum is not as disastrous or as permanent as our brains can make it seem. We can turn things around, and we can help others turn things around mentally too. Helping somebody else can be a great way to turn around our own momentum. We volunteered at the home last night and I think the biggest beneficiary was me, partly because I could be thankful for what I have compared with many of the residents and partly because I think I was helpful to some of those residents.

 

Finding momentum turners is important when we are in a negative cycle or trying to help others facing such a cycle. There are many ways to help. We can point out that defeats are often temporary and not all that serious, and can seek out victories and make sure they are sufficiently noted. We can be thankful for what we have, and seek to help others. I have needed all of these techniques over the last couple of weeks. I hope that the current upswing can continue, but I must also be ready for the next downswing, be ready to respond when it arises and remain thankful for ther love of others helping me through the less good times.    

Emotional Self Help

 Three days before Christmas I returned to hospital for an operation to remove the tumour. I understand that it was successful, although I made it tough on the surgeon by having two seizures while under anesthetic. The recovery process has been smooth once again but seems to have taken longer this time, and we have both had a bit of an emotional lull over the last couple of weeks. That might be partly due to the clear worsening of my optical symptoms as a result of the operation, and a lot of uncertainty about how we can expect that to develop. At the same time we must now prepare emotionally for radiation treatment, which some people tolerate easily but is tough for others. I need to build up my mental strength in case I turn out to be one of those who tolerate that treatment less well.

 

Logically, this time the emotional journey should have been easier. We had already been around the cycle once or twice so had some experience to draw on. The news back in November was only bad, whereas this time the surgeon and other specialists have been rather optimistic. Now everything is being handled through MSK, there is one less reason for stress, especially for Carmela. The path forward is also much clearer now, compared with November when we had to be patient through a long period of uncertain diagnosis. Last time it took us a while to understand that many of our challenges were due to side-effects of the medication regime, specifically the steroids.

 

Unfortunately, emotions do not always respond logically, and for some reason we have both found the last couple of weeks more difficult than the period immediately after the biopsies. Maybe last time we gave the emotional challenges our full focus and were able to tap into reserves of strength that we did not know we had. Maybe the initial help from others was greater and more helpful. Maybe we both felt a duty to help others, specifically our children, and were able to power through our own challenges more easily as a result.

 

Somehow, through November and most of December we achieved an unusual level of happiness, and I certainly look back on those weeks as precious. Our goal now has to be to try to reach a similar level of contentment again. As long as things don’t turn ugly medically, it should be possible. But somehow it feels tougher this time. One way of trying to understand this and to find ways towards better outcomes could be to use the model we developed of progressive emotions. Which ones have been harder to work past this time? Why? What can we do to make progress from here?

 

I reached a conclusion early on that anger, resentment and blame were emotions that would surely spring up. They had to be accepted and embraced, but we also would be well served to find ways to move on from them, because in the end they would only do us harm. There is a lot of anger in society nowadays, and there is even more anger in a hospital environment. Some patients are in a lot of pain. Politeness between patients and staff is not always exemplary. And the relatives and caregivers of patients often seem to do more harm than good. Specifically in the US, there is a culture of suspicion of medical providers, a fear of the financial aspects of care and a belief that we have to be ready to litigate. It is no wonder that everybody in hospital seems so angry.

 

In my previous hospital stays I have managed to move past anger quite quickly, even when the hospital service was stretched and the news was relentlessly terrible, but this time I was not such a good patient. Because of the seizures I was placed on even higher doses of steroids and placed on a regime of constant care. The steroids probably made be aggressive and the constant care annoyed me, because I felt quite capable of moving about and going to the bathroom on my own. Although the cosmetics and the communication at MSK were better, much of the core experience was just as flawed. Nurses are overstretched and some lose their bedside manner on bad days. Some are not very good at inserting IV’s or taking blood. Why are all hospital beds made for people who are shorter than five foot six? Why are there no sheets? And the disturbances are relentless, so rest is very hard to come by.

 

I am not sure I was in a mental state to control this anger, but something led me to smart conclusion, which was to get out the hospital as quickly as I could. Carmela agreed with me, and on Christmas eve we worked hard to be discharged, and ultimately succeeded, no doubt because of the time of the year and also because the nurses were probably as anxious to get rid of me as I was to escape from them.

 

At least the anger passed quickly enough and reduced as time passed, especially once I was away from the hospital. I usually knew it was unreasonable and only likely to make me feel worse, I just had to acknowledge the emotion, wait for it to pass, and hope I was not rude to people in the meantime. But this time I also experienced a lot more sadness and fear as well, and those emotions tended to linger. Fully three weeks after the operation, recovering well with little pain and an optimistic path forward, I still find the tears tending to flow. That reflects some sadness and loss, but also fear of the future.

 

Why might these emotions have been more prevalent this time? Perhaps the weight of what the cancer means for my future is only now sinking in, maybe influenced by the time of year and thoughts of a possible last ever Christmas or New Year. Maybe the high steroid dose made me more vulnerable emotionally and made it harder for my wife and I to help each other. Surely the presence of the much more severe optical symptom has not helped, especially since nobody seems to know whether this is likely to improve over time. It has not been easy to accept that I am not at all fit to drive, that I have to be careful crossing the road or in. crowd, and that I can’t really appreciate beauty while everything is a bit of a blur, and my mind cannot avoid thoughts that such disability may be permanent, that it creates a burden for others, and would be hard to endure if it got worse. Every small defeat makes me sad and sometimes angry, and the last weeks have involved many such small defeats.

 

Again, I have learned that I cannot fight these emotions but have to accept them and wait for them to become less strong and be balanced by more positive thoughts. One way I have done that is by keeping track of small victories as well as small defeats. If I can successfully walk to church or to the subway or take part in a choir rehearsal or enjoy time with friends and relatives, then I can chalk up a victory and imagine more in the future. That is why I find it healthy to stretch myself, not recklessly but enough to believe that the victories are genuine.

 

Then I have to find a way to move towards the more positive emotions of thankfulness, acceptance and even peace. I have come to understand that the key to this journey lies with thankfulness, and thankfulness is something I can influence myself. It is probable that last time the flood of thankfulness generated by the love and good wishes of others helped me move into positive emotional territory, and it is understandable that this time that flood has been weaker – to an extent I am yesterday’s news now.

 

But there are so many reasons to be thankful. I can get miserable by dwelling on what I can no longer enjoy. I cannot drive, my eyesight is compromised, my sleep has been a mess while the medication has been high, and our dream trip to Europe will have to wait until later in the year. But I can get about independently, I can read, I can appreciate culture and TV, I am in little pain, I can get to sleep when tired, I can sing, and I am still surrounded by love and kindness. When I can focus on being thankful for all this, the anger vanishes and the sadness and fear become less, and it seems an easier journey towards acceptance and peace.

 

It has taken longer this time, but finally I feel I am back on a good path. Achieving small victories has helped, but the most important element has been to rediscover the joy of thankfulness. There will surely be more tough times ahead. If I can remain thankful, those emotional dips might be smaller and shorter, especially if I can avoid too many more stays in hospitals.  

Shared journeys to different destinations

 One thing that has struck me throughout the emotional ordeal of cancer has been how my wife and I are intimately connected on our paths but must face very different end points. Now I consider this issue more deeply, I realise it is not an uncommon aspect of life. Still, I am not sure that makes it any easier to handle.

 

As soon as my health issues became apparent, my wife and I resolved to face whatever lay ahead as a team, supporting and caring for each other and making decisions together. After all, that is what life partnerships are for. There are times in life when we are in acute need of emotional support, and that is when those of us in loving partnerships have an advantage over everybody else. During good times, we might have a tendency to undervalue this enormous asset. If we are smart, we invest a lot to ensure that we are there for each other when we really need help. I cannot imagine how I would be coping emotionally right now without my wife by my side.

 

The issue is that, while we can face up to the challenges of today as a unified team, we must also prepare for very different futures, and our individual journeys have to reflect this fact.

 

In the phase we have endured so far, while I have been healthy, our emotional needs have overlapped quite well. We have been able to help each other move past anger and bitterness and have been able to embrace sadness and the loss of our anticipated future joy together. We have each had to come to terms with our own fears but have been able together to reach thankfulness and peace, with a large part of the thankfulness being for each other.

 

However, like the man in Robert Frost’s wood, our paths will soon diverge. I have to reach acceptance with the prospect of death, and of the pain and suffering that will no doubt arise once the illness becomes more severe. In my wife’s case, she has to face becoming a carer, perhaps for an extended period of time, and then to a life without her anchor.

 

We have both signed up for therapy, and it does not surprise me that we have been paired up with professionals of different expertise, and advised to stay apart unless there is a particular issue we feel we can address together. My wife’s therapy will initially focus on the caring aspect, which seems to make sense.

 

The caring aspect became more real this week after a further two night stay in hospital, this time for an operation to remove as much of the tumour as safely possible, with radiotherapy likely to start next month. This was a larger, longer operation with a longer expected recovery time, not least because I am told that two seizures occurred during the procedure. The main issue that arose were additional visual symptoms, something else the surgeon warned was likely. The original visual field symptom seems to be a bit better, but I am experiencing frequent double vision and some apparitions like a curtain or various cars in the sky. It is very disconcerting. Apparently in some cases it goes away again fairly quickly but in other cases can linger. If it stays it will take some getting used to. In better news, I have found myself able to read quite competently over the last couple of days. But one way or another I might need a bit of help with some tasks and emotional support in the coming days, and I have certainly been quite tearful, for the first time in a while. So I am grateful that my wife is so determined to rise to the task at hand, though the last thing I wish is to burden her.

 

The journey to different destinations is somehow universal in life partnerships. We vow to travel together until death do us part, and most of us envisage an end literally together. But life has other plans, and usually somebody has to go first, on occasion at a time when the survivor is still quite young and healthy.

 

Most of us resist conversations about how we would cope if widowed and what we would wish for our surviving partner if and when that happens. Perhaps this is a lost opportunity. What seems to happen a lot in long and happy marriages to old age is that when one partner dies the other tends to lose some will to live and follows behind quite quickly. That way many productive final acts may be lost. I am sure I am not alone in fervently wishing that my wife can recreate a fruitful life in the time she might well have if the cancer kills me at some point, whether in months or, as we hope, years.

 

I can wish this. To an extent I can help her frame it and plan for it, as indeed we started as soon as we received the diagnosis. We have taken steps financially and been quite practical about it, and I hope that continues.

 

I fear though that there is a trap lying here, represented by a desire to micro-manage from beyond the grave. A lot is written and shared about legacies and final wishes, but in the end our job is to prepare the ground, leave plenty of space, and get out of the way. The survivor is probably not doing themselves any favours by building shrines and memorials either. Life is for living.

 

So my favourite management advice about getting out of the way may apply to grieving the end of a happy marriage as well. And I can also argue that it applies just as much to another critical life task for most of us, that of parenthood. Our job as parents is to give our child a solid start loaded with skills and hope and optimism and love. We all fall into the trap of micro-managing our children, such is our desire to protect them and to make them happy, but there comes a point, earlier than most of us care to accept, that getting out of the way is a smarter plan. One of the things which affords me the most acceptance of the situation I now face is the belief that as parents we have successfully passed this important milestone with all three of our children.

 

The coming weeks, months and maybe years will give us practical experience of a shared journey to different destinations. I hope we can manage it with love, care and gratitude, right until the moment of separation. No doubt there will be mistakes along the way, including denial, lack of acceptance, micro-managing and shrine- building. None of this is easy, which is no doubt why we avoid the topics involved so readily. But I believe we owe it to each other as acts of love to do some preparation for what is almost inevitable. Some live longer than others. We can celebrate what we have had and what we can still have, without sliding into unhealthy places. I pray that this time will be given to us and that we both use it wisely. I believe we have made a strong start, but accept that this shared journey to different destinations will surely be tough at times.    

Conversation Starters

This week my doctors finally reached the end of the various paths that might have lead to a more specific diagnosis, or at least progressed far enough to judge that the time had come to stop investigating and to take some action. The tumour is growing and we have been lucky so far that its symptoms have been mild.

 

Strangely, this change caught us off guard. We had become rather comfortable in this phase if a phony war, trying to pretend to be patient while actually rather enjoying the peace and false comfort of regular lives. So when the doctor this week talked about an intensive course of radiotherapy and the possibility of further surgery, we did not really believe how imminent this might be. That changed when a nurse from the surgeon’s department called me yesterday and told me I was booked in for an operation next Thursday.

 

This news should not have been a surprise at all, but it brought all sorts of supressed emotions to the fore, and for some reason this happened to my family more than me. We thought back to the previous biopsy surgeries, the Russian Roulette analogies, the hurried preparations and goodbyes, and the unwelcome visits from medical professionals bearing bad news. At least this time in MSK I expect the communication to be better, and to spend more time in something resembling a bed in a ward rather than a corridor cramped with refugees.

 

A part of the disappointment is the confirmation of a reality we have always known but somehow hoped might disappear. Nobody has tried to disabuse us of the notion that this is a high grade growing malignant tumour, and what the typical outcomes for such things entail. But while the investigations continued and while the symptoms have stayed stable, there was a space in our brains for irrational hopeful thoughts.

 

We should be happy. We want to fight this tumour and to enjoy more happy months like the one we have just had, and we can’t expect our luck to continue without some sacrifice. Bring it on.

 

This phase of feeling very well but under mortal threat has had some unusual features. Most obvious has been the magnification of all emotions, creating an intensity of experience that is remarkable, no doubt enhanced further by the effects of the steroid medication. We read about experiencing every day as if it is our last, and that has certainly turned out to be the case for me during this period.

 

Part of that has come from reacting to how others have perceived me. Many have been thrown by not finding me sick, and for others who have encountered me multiple times this has entailed a humorous progression. The reality undermines assumptions. This started during my first hospital visit, when I was wrongly assigned red socks upon arrival, a code that I now know indicates a patient in acute danger who must be watched closely at all times and not permitted to do very much on their own. It took the medical staff several days to realise that I was no such patient, and their attitude moved very gradually from a sympathetic caution towards accepting my offers to help on the ward.

 

The same has happened with others, even with my wife. I am at a slightly increased risk of a catastrophe, and should not be reckless, but it is also healthy for me to live my life as normally as possible, even to the extent of swimming, and certainly to include doing the shopping and washing and general household chores. The result has been a sort of hybrid arrangement at home, where by now I can contribute fully to the work, but where if I am away from the home I am expected to sign in hourly via whatsapp to confirm that I am still OK. I guess it is a sign of love and I am happy to play along with the regime even if it seems inconsistent.

 

Most interesting, and most rewarding, has been how people talk to me. I no longer make such a point of telling everybody about my illness, but one way or another many people know something serious is going on in my life. That can act as a conversation starter.

 

It doesn’t work with everybody. One slight surprise is that medical professionals tend to avoid such conversations. They are trained to deal with physical sickness, and when I display the opposite, they are flummoxed and clam up. Even if I offer an invitation by referring to my emotional upheaval, the response is usually something that deflects conversation. Perhaps they hear too many stories and need to preserve their own sanity. Perhaps they are cautious about overselling their skills.

 

The other groups that are usually clueless are young people. Typically, they have no idea what to say so they say nothing, which I guess is not the worst response. Even so it might be a lost opportunity to build some life experience that might be valuable one day. But the Instagram generation does not generally seem to have the skills to respond to the situation.

 

But many people have a lot to say, and by and large I find this welcome. In most cases my situation seems to induce people to turn the mirror on themselves and to share their own stories and feelings. Two priests have shared the sacrament of healing the sick, and in both cases I have learned a lot more about them as a welcome consequence. The nuns at the home where we volunteer have displayed their wonderful humanity and wisdom, and the comfort they have offered has been deeply helpful, even when I struggle to accept the doctrinal side of their input.

 

Many people have been anxious to share their own medical stories. These stories have various themes, and the purpose of sharing ranges from trying to give me comfort to talking through some anger or confusion. Many people have suffered misdiagnosis, but often with the pleasant consequence that a projected early death did not materialise. I can conclude that medical science has come forward a long way but still has further to advance. Given what I know for sure about my own condition, that only offers me a limited reassurance, but I do not rule out anything. I also conclude that going too deeply into the medical side can be a bit of an unproductive rabbit hole.

 

The more interesting stories so far have been the emotional ones. Sometimes I have been able to steer a medical story towards its emotional aspects, and that has usually made it more valuable for me and, I sense, for the narrator too. But many people have surprised me by sharing their emotional stories without prompting from me, and I feel privileged whenever that happens.

 

One lesson for me is often I will underestimate the depth of the experience of others, and how such experiences can help to guide our own philosophy. Many people who have lost a loved one in a cruel way, or lost a child, or somehow recovered from a near-death medical condition, and these people have found their own way to cope. Central to this often seems to be a more accepting attitude to the prospect of their own death, and that revelation has invariably helped me. The stories are not always comforting, since some people seem to almost will their own death as their solution to their grief, and I certainly would not wish that attitude on anybody, certainly nobody close to me. But there is still a cleansing power to such raw emotion.

 

One theme from the people sharing these stories seems to be calm acceptance. It is hard to imagine such a refreshing change in philosophy coming about in somebody consumed by anger or bitterness. In my own case, I am continuing on the quest towards finding acceptance and peace, and helping my family along their parallel journeys towards those same goals. The experiences of others can only be helpful along the path.        

Altered Perspectives

 By now I am getting used to living with a new time horizon. It has some surprising benefits. 

A few months ago I suppose I looked at things across a horizon of twenty or thirty years. When I read the obituaries of rich white men, most of them seem to last into their nineties nowadays and I guessed that would probably apply to me as well. That changed overnight with the cancer diagnosis.

 

Our timeline is still completely uncertain, and we still don’t have a stable diagnosis, leading the doctors to avoid any questions about how things may develop or how quickly. But a bell curve with a mean of twenty or thirty years has surely morphed into one where years have been replaced by months or even weeks.

 

It has surprised me how quickly I have been able to come to terms with this new reality, and surprised and impressed even more how my wife seems to have been able to achieve the same. One key to it seems to be our emotional journey.

 

We decided early on that anger and bitterness were not going to take us anywhere helpful, and we were able to move past those emotions very quickly. Sadness and fear are helpful and can be embraced, but then placed into a perspective that stops them dominating our thoughts, except on days when these emotions become triggered. If we can move past those, the next set of emotions are more positive, including thankfulness but also happiness and joy. I am currently doing daily homework tracking my emotions for my therapist, and somehow I find that happiness is dominating my daily scribbles.

 

The final stage involves acceptance and peace. These were harder for a time, mainly because of the emotional supercharging of the steroid medication. But this week I was tapered down to 2mg per day, and that seems to have done the trick, at last restoring my energy to within more normal parameters. Long may that last.

 

My desire for legacy projects and daily closure of activities has not abated, and I am comfortable with that, understanding what may lay just around the corner. I find great joy when achieving a permanent simplification of a part of my life. But I have noticed a few other interesting changes in my attitudes as well, ones that may have relevance to people in less extreme situations.

 

The more trivial changes are not really surprising. I find it easier to treat myself. With a twenty year time horizon and living in the USA the spectre of possible diabetes is always present, leading to many trade offs of exercise and diet. Strangely, in the new situation swimming has changed from a chore to a pure pleasure. As for food and drink, my taste buds have become more active, and diabetes is no longer so scary a prospect. I went a full year without buying any Trader Joe ice cream but that sacrifice does not seem so valuable now. I will often treat myself to a second cup of coffee. If I fancy a pain au chocolat or a sourdough loaf from the French bakery then I will go shopping for them. We have got into the habit of eating out more too. Many places in Manhattan serve a Sunday brunch, and I no longer seem to resent forking out $25 for some eggs that I routinely prepare myself for breakfast for a few cents.

 

More interesting may be my attitude to the news and current affairs. I devour The Economist as avidly as ever, but I find many Newshour stories less interesting, especially those that just seem to complain about Republicans. But I notice that since my diagnosis I feel much more positive about the news. It is possible that November was simply a great month for good news, but I am not sure how much this is about the news or how much about me.

 

Netanyahu aside, populists had a terrible November and it is possible that the tide may be turning. Bolsonaro lost, the EU is slowly corralling Orban, Modi is showing a more balanced side, and, most visible of all, the Trump wave is finally over. Decisive in that is the abandonment by Rupert Murdoch, a blow from which there is no recovery.

 

The climate summit was not a great success, but 2022 will go down as a decisive year in any case as a bi-product of the Ukraine war, because Europe’s lead in finally weaning itself off Russian oil and gas will be emulated elsewhere.

 

Then there is Russia and Ukraine. Putin is coming under more and more pressure at home as his erstwhile allies start to desert him and facts on the ground stack up to undermine his narrative. He is looking for a way out now, and NATO continues to play the war with impressive expertise, adding confidence to how the endgame can be managed.

 

The UN has had a great few months as well, supported ably by the US State department. Human suffering in many regions can be mitigated by the grain and fertiliser deals in Ukraine and by fragile peace deals in Ethiopia, Yemen and elsewhere. Tony Blinken could be my candidate for statesman of the year, but what we are really witnessing is the slow return of competence to US foreign policy after the willful destruction of the Trump years.

 

Most interesting as usual is China, and here Blinken has blotted his copybook with the unjustified and counter-productive technology sanctions announced a couple of months ago. But even here I am delighted to see the rest of the world pushing back effectively, starting with Olaf Scholz and followed up at the G20 by Indonesia and other Asian nations. Perhaps this destructive new cold war can be averted after all.

 

China is certainly playing its part. Having rescued the world from the financial crisis in 2009, the last month has seen the beginning of a repeat performance, with decisive moves to fix the broken property market and now the timely moderation of Covid policies. I sense the 2023 recession in the rest of the world may be shorter and milder as a result, and perhaps the US will yield some ground back to China as a reward.

 

The Economist special report in October about China’s goals was the best journalism I have read in 2022. What shines through is the overall goal of equitable development. Having lifted half a billion out of poverty in one generation, all policy is designed to take out another half a billion in the next generation, while helping to develop other countries at the same time. These goals are pursued by an efficient civil service that shows the capacity to learn.

 

Compare this with America’s goals. The most powerful people in the US are probably Rupert Murdoch, Elon Musk, Jeff Bezos, Binyamin Netanyahu and some hedge fund managers. Their goals are overwhelmingly to manipulate public opinion to retain unjust power and wealth. They are top dogs and want to stay that way, just as colonialists have throughout history.

 

One of these systems is called communism and the other democracy. Each has its flaws. The Chinese make mistakes and are unjust to their own minorities. But if you start from their goals and their ability to execute, I think I will reluctantly back their approach over the broken alternative offered by the US – 2022 and Blinken notwithstanding.

 

This sunny view of the news is surely biased, and I wonder how much comes from my generally altered set of perspectives. It is easier to be relaxed about climate change when you don’t expect to be around to witness much of the damage, and it is easier to feel less concern about populists when there seems less danger of being alive and suffering under their spell twenty years from now.

 

I also wonder whether the emotional journey concerning my disease has had a spin-off benefit in my attitude to news. What are Murdoch and the others trying to instil in us? It starts with anger and resentment, and moves from there to sadness and fear. These are exactly the emotions that I am working hard to move past, and perhaps we can all try to take the same attitude when confronted with populism. Life is certainly sunnier when we can reach thankfulness, happiness and even peace.

 

Medical science is a good place to start when looking for something to be thankful about, and you can find stories in the (non-populist) news to engender a torrent of thankfulness. 

The Cursed Cure of Steroids

 Another week has passed and I still have no stable diagnosis and hence no treatment plan or reliable prognosis either. On Tuesday I will meet again with MSK and by then they will have had all the data for eleven days and might be ready to make some proposals. Feeling fine in the meantime helps us to retain the necessary patience through this phase. Actually most of the time I feel better than fine, amped up for action (and then suddenly unable to keep my eyes open and requiring an immediate nap). We have established the reason for this weird state – it is the steroid medication I am taking.

 

I have some family history of steroids that I only start to understand now I am experiencing them myself. The last fifteen years of my mother’s life were cursed by steroids. In 1997 she had a medical episode that led to a diagnosis of temporal arteritis, something we never really understood and never really observed any symptoms from, though apparently it carries risks of blindness and other ailments. Mum was immediately placed on steroids to counter these risks, and she was never again able to escape from them, whether due to a form addiction or simple bodily requirement. Whenever (under family pressure) a doctor tried to reduce her dose, it led to sickness and behaviour change and within a week she was back at her regular level of prescription.

 

No doubt the steroids helped her to stay alive for as long as she did and to avoid the worst of her core illness, but the side effects were very serious. Her face and body swelled up like a grotesque red doll. Her bones became very brittle and her recovery from any incident became very slow. Her legs were constantly a deep purple colour from bruises that refused to heal. I don’t know, but the steroids may also have led to incontinence and other medical issues.

 

What we failed to understand at the time but is now starkly revealed is how the steroids must have affected her behaviour. Once dependent on them, her sleep pattern was never healthy, and she hated the curse of having to sit up for half the night with no chance of sleep. And in her later years her personality hardened and she found it hard to be trustful or generous in any relationships, which probably impacted how willing people were to be friends with her. It has taken my sister and I years to reconcile ourselves with our mum, and I believe a lot of that comes down to how tough she was to like during the steroid years. My concern is that during those twilight years this will have caused her much mental hardship and to struggle to love herself.

 

Now I am quickly observing precisely the same mental effects myself (thankfully not the physical ones, but they will no doubt come over time as well). It is extraordinary how just 3mg per day is having such a profound effect. The longest I can sleep at any stretch is three hours, and a typical night will have two bursts of deep sleep of two to three hours divided by an hour of reading. The 5am soccer world cup games have been a valuable distraction for me. By 6am I am wide awake and in full-blown production mode, but then I need two or even three deep naps during the day, before collapsing by 10pm and starting the cycle again.

 

More concerning are the personality impacts. My wife has spent ten years turning me into a more mellow and likeable person, teaching me the glorious benefits of service, kindness and generosity. My daughter visited from Dubai last week for a perfect trip, and she has observed my transformation as well. Together they were quick to spot the changes and motivated to alert the medical professionals to them.

 

I have reverted to my behaviour from a younger, more selfish and opinionated age. I have become needlessly quick to express an opinion or to offer feedback when silence would be a wiser course. The hyperactivity works against a peaceful household atmosphere. We are all obviously emotionally vulnerable just now, and this new me is far more likely to generate conflict among my most valuable relationships, the ones where we will have to rely on as this medical situation evolves. From the start of this ordeal, my greatest fear has been personality change threatening the legacy between me and my wife, and the warning signs are surely there now. Although we start the journey with a lot of love and goodwill to counter the threat, we need all the help we can get.

 

Urgently alerted by my wife and daughter at our first meeting with MSK last week, my quarterback gave full respect to their concerns. This is exactly the sort of area where we expect the well-resourced, patient-centric approach of MSK to pay dividends compared with the stressed individual clinicians of Long Island. My steroid dosage has already been halved and perhaps can be tapered further as we move into a new treatment phase.

 

We also must accept the benefits of the steroids. Their purpose is to reduce or prevent swelling of the tumour, and it is usually swelling that brings on the core symptoms and the risk of catastrophe. My core symptom remains as it was back in August, and perhaps that would not be the case without the steroids. We cannot afford to take unnecessary risks with the tumour. The quality time it is giving us every single day is worth accepting some trade-offs.

 

The hyper-activity is even a bonus in other ways. I am getting stuff done, including the unpleasant but necessary stuff like sorting out my complicated finances in Portugal. Even more fundamentally, feeling well must be the single most valuable contributing factor to staying well. If I start to feel sick, that can lead down a rapid slippery slope. Thanks to the steroids, that risk feels low just now.

 

While welcoming the benefits, I am thrilled that my wonderful family team was so quick to highlight the risks, and that my new medical team will take them seriously and perhaps find an appropriate middle path. I wonder how the last years of my mother’s life might have been different if she had enjoyed those opportunities. I wonder how many other people around the world are thrust into this cure that can so easily become a curse.

 

I wrote this blog in one sitting in forty minutes. That is my early-morning superman routine in action. It is how I am just now, for better or for worse, but the difference is certainly extreme. It is no wonder that sports stars and others are lured into the trap of taking steroids, for I can bear witness to the performance enhancing potential every single day. Heck, even my voice is much improved, with a strong core tome and breath control, a more flexible high register and greater awareness of the sound around me and how I can contribute to group intonation. I'll certainly happily take that.  

But while I can admire the new me and even make valuable use of it, I fear for its effect on my core relationships, and nothing at all is more valuable than those. There are aspects of the new me that I struggle to like, and that is sad after all the years of learning to be lovable. Still, we are still in the early phases and opportunities to find the right responses, and I can feel thankful to my family, on this Thanksgiving day in the USA, for being truly on my team when I really need it.