So far, one of the many reasons to be thankful regarding my cancer has been the absence of much physical pain, whether chronic or acute. I suppose most of us carry a mental image of severe illness that involves significant physical suffering, but that has not been my experience so far, and perhaps my experience is closer to reality for many others too.
It is annoying to be frequently pricked with needles for IV or blood samples, but most of the MSK phlebotomists seem to be remarkably good at painless pricking. Nausea and fatigue are debilitating, but hardly painful. For me, MRI scans are simple and pain-free. The itchy rash that afflicts me during cycles of chemotherapy are unpleasant but not especially painful. The recovery phase after an operation is certainly tough because it is so hard to find a position that is comfortable, but the pain is usually quite mild and transitory. So far, I can only really describe the vertigo that developed last summer as more painful than mild discomfort, and thankfully it sems that problem is solved, for now at least. I am quite proud that I have managed to get this far without feeling the need to take a single painkiller, although I believe some were administered to me after my operations.
Whenever anybody enquires, I always explain that the emotional journey has been tougher than the physical one. Even with emotions, we have usually managed to find an effective way forward. Being a strong couple working as a team has been instrumental in that success. But we have endured some tough times emotionally, and no doubt there are other tough times ahead.
Last week we watched a good TV series called Expats, which is probably not for everyone but really resonated with me because of my background. One of many lines from the series that set me thinking was a claim by a character that the opposite of talking is not listening, it is waiting. I found this to be quite insightful. Talking, a conversation involving listening and exchange, makes most situations less stressful. When we don’t talk then things can fester. We wait, hoping that resolution will arrive of its own accord, but often that does not happen, and the waiting becomes progressively more painful and more damaging. Sometimes we have no choice but to wait, but often we waste opportunities and suffer as a result.
When I recall the toughest parts of our emotional cancer journey so far, waiting is something of a common theme. The difficult times do not always involve waiting, but often do. Receiving bad news can be devastating, but we find ways to cope and quickly recover. The periods of anticipation have tended to be harder.
We had some potentially bad news last month, after an MRI scan revealed an area of concern. After a long run of clear scans, we were not fully ready for this news, and it sent us into a tailspin for a day or two. But we found that we had a routine to cope and to recover. We let the news sink quietly, reflecting. We hugged each other and cried a lot, but we avoided too much talk and speculation. Sure enough, after thirty-six hours we were calmer and ready to talk about what had happened, and the emotional pain became very manageable.
I find emotional pain to be more difficult while waiting for something to occur. The challenge depends a bit on the situation. The category I find easiest is when I am suffering from a symptom and must wait for it to weaken. That happens with nausea and with my itchy rash. Especially with the itchiness, there is nothing to do but wait for it to go away. I sit quietly, either with lights off or reading. I try not to scratch, but instead find ways to distract myself. It helps that by now each symptom tends to follow its set pattern. Now I know that, if I am patient, the itchiness will reduce after a while, and I will be able to sleep. That makes it tolerable. That type of waiting is much tougher before thew pattern has been set. When vertigo first struck it was truly horrible. That was only partially because of the discomfort involved. Worse was the sense of helplessness and fear. What is happening? What is about to happen? Am I dying? Should I panic?
Waiting is the most common experience while in hospital. Even when the staff do their best to make the experience as positive as possible, in my experience hospital is no fun at all. I am never able to relax and somehow I feel as though I have lost some control over my life. My bed is never comfortable. There is always lots of background noise, and sometimes foreground noise too, such as a deaf neighbour watching Fox News. The machine monitoring the drip is always malfunctioning. It is always too hot or too cold. Going to the bathroom involves complicated manoeuvres or a time-consuming request for help. Nights are long, but also short owing to frequent interruptions. Information arrives at strange times and in strange ways. There is always a risk of being moved around.
I try to help myself endure a hospital stay as best as I can, but all these inconveniences are tough to work around. I push the staff to let me independent. I dress in street clothes. I walk around the ward. It helps, but it is not enough. Most of the stay feels like waiting, and with no peace.
Another difficult time waiting is before important appointments. I am finding this week difficult because tomorrow I have a scan and I will see my oncologists to discuss the results next Tuesday. The range of outcomes is especially high this time, and I find myself speculating about all the possibilities and what they would imply.
I expect the stress to grow through this week and peak on the day of the appointment, perhaps in the waiting room before we are called in. This pattern is reminiscent of other times in life. As children we all feared the dentist. We became especially stressed in the waiting room. In the end the pain was never as bad as we anticipated. Waiting for exam results was similar, and so were driving tests.
This afternoon I found myself worrying obsessively about my upcoming appointment. So I needed to follow my own advice. I am not in hospital, so I had every chance to find my own solutions in peace. Slowly I was able to regain a sense of proportion. I could pray. I could distract myself. I can embrace my wife tonight. We can talk. I can do something kind. I can remind myself always to be thankful.
Unlike a driving test, I also have no chance to influence the results of tomorrow’s scan. What will be will be. We must simply stick to the same principles we have followed from the beginning. Be prepared for the best outcomes and be prepared for the worst too. Whatever the result, take some peaceful time to reflect and process and then face the future together with thankfulness.
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