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.
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