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.