It is now ten days since the end of my intensive treatment phase. One thing it has taken me time to become accustomed to is how different effects and symptoms arrive at different and unexpected times. This factor makes it harder to assess, and to plan, and it must also make the job of the doctors much tougher as well.
I was given warning that this would happen but chose not to listen fully. The intensive treatment of both the radiation and the oral chemotherapy lasted six weeks in total. We might think that changes would start to occur soon after treatment began and for conditions to revert to their prior state soon after treatment ended. The reality has been very different.
Nausea is just one of many examples. My nausea did start as soon as I began my course of oral chemotherapy. It came more strongly on some days than on others. It was usually at its worst during the afternoon. I learned that the best way to reduce nausea was to eat, even though the nausea itself led me to have no desire for most food. I suspected that some of the other medication made the nausea worse, and that the radiation treatment might also create some nausea. But it was not at all consistent, and my theories might be rubbish.
The nausea having started soon after treatment began, I naively expected it to go away again quickly after treatment concluded. But it did not. Today is the first day I have experienced no nausea at all, and even that does not give me a guarantee for tomorrow or the day after. I am fairly sure that the oral chemo is the main culprit, and it must have started coursing through my system as soon as I started taking the pills. But the continuing nausea means that the chemicals were still affecting me long after I stopped taking pills. Next time I should make fewer assumptions and be more ready to challenge my own theories.
For steroids something similar happens. In this case, it takes only a day or two for me to notice any effects after starting on a course. But the time lag between stopping the course and my body returning to normal is much longer. This time my dosage was quite low, but it still took over a week for my sleep pattern to return to anything resembling normal after I stopped the pills.
When it comes to my peripheral vision, I again find inconsistency and unpredictability. The basic influences are clear, but how they work in parallel or with which time lags is far less clear. For sure the operation before Christmas led to a major additional loss of peripheral vision, and the swelling that the operation undoubtedly caused will have probably made things still worse before starting a recovery. Then the radiation will have caused more swelling and deferred any recovery further. But the short burst of steroids should have acted to reduce the swelling, and the end of treatment should have naturally started swelling to diminish as well. Indeed, I have observed all these effects, but not in a straight line or with any consistency. I believe my peripheral vision now is better than it has been since before the operation, but not every day.
A final example is different. Towards the back end of the treatments, I started noticing changes to my skin. Some long-term lesions vanished completely while others seemed much looser, as if I could even scratch them off if I tried. Other lesions appeared that I had never noticed before. Then, a few days after the treatments ended, I started to experience a mild burning sensation across much of my body, mainly in the evenings and at night. The burning sensation came with a strong urge to scratch, which still persists, though perhaps it is moderating a little bit and certainly I am becoming more adept at resisting the urge.
I reported this new symptom and now the doctors must try to work out what is happening. Luckily my team is very responsive, and I have a dermatologist appointment set up for Monday. I guess the most likely cause to be more delayed effects of the oral chemotherapy. I hope this theory turns out to be correct, because the alternative is that this new symptom is a development within the cancer itself. Hopefully we can learn more next week, though the symptom itself may have changed by then, and the dermatologist will surely have to run some tests, and even those may be inconclusive.
These different timings of onset of symptoms, combined with unreliable tests and even more unreliable self-assessment by patients, must make the job of the doctors much harder. And I am one of the lucky few. For many illnesses for people with weaker insurance and access to fewer medical professionals, it can take weeks just to secure an appointment with a relevant specialist. The timeline for many people involves a lot of waiting, interspersed with repeated frustrating findings which may rule some diseases out but fail to provide a diagnosis of any certainty and one that can be effectively treated.
It must be tempting for both doctors and patients to try to predict what may be coming and when. I confess that I tried to influence my doctor to time the most recent course of steroids, predicting that the energy burst (and improved singing voice) would come just when I needed it. I was lucky this time in that the tactic seemed to work, but there simply too many variables and too much at stake to make it a good strategy.
There are parallels in other aspects of life. A classic one, very much in the news, concerns how central banks set interest rates. They have a mandate to try to control inflation and employment within desired bands and interest rates are their primary weapon. But it is hard to time the policy because the effects of interest rate changes usually lag by several months. They have to try to treat tomorrow’s symptoms but only with today’s data, filled with unpredictability and influenced by several external variables. It is no wonder that mistakes are made.
This is one reason why artificial intelligence may soon make substantial contributions to medicine. My doctors are trying to choose the most suitable treatments and medications to treat my cancer, knowing that every patient is different and that the data they can use is subject to poor measurement and variable time lags. Having a database available of how tens of thousands of other cases played out is potentially very useful in this situation.
With the current frontiers of medical science, I am certainly lucky. Somehow I managed to spot my visual symptom early enough for treatment to be able to start before the cancer had already won the war. As a result, I am surely healthier than many patients and able to contribute useful measurement data. Thanks to the hard work of my wife, the insurance available through her job and our location in the global capital of cancer research, I have access to the best expertise.
But the confusing time lags are just one of many factors to draw a conclusion that even a lucky patient such as me must accept lots of uncertainty and an incomplete toolkit. This science is progressing at a rapid pace and the guesses made by doctors twenty years from now will surely benefit from improved data and tools. Perhaps I can benefit from some of this myself. At least I can offer one unique data point among thousands to assist in the process. God bless science and humanity.
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