Simpler, clearer, better - but also new needs of acceptance

 Simpler, Clearer, Better – but also requiring Acceptance

 

Seven short weeks ago we were in Portugal, enjoying a relaxing and peaceful time with blissful walks and lovely meals. We still had the lovely weekend in Brighton ahead of us, a time for singing and family. After that we returned to New York. Since then, much has happened.

 

We suspected we were returning to face a period of uncertainty, after my scans had taken a worrying turn during the spring. As it turned out, July would include an operation, four more scans, many other tests, long phone discussions with experts, and even a day trip to Boston to consult a different brain cancer guru. The whole month felt like a change of pace, including more urgency and packed with uncertainty, but behind it all lay the need to accept a change in my situation. Barring an unlikely miracle, our dreams of a long respite would have to be shelved. Now, the cancer was winning, its effects were creeping closer, and perhaps the best we could hope for was to hold it at bay for a while longer.

 

Inevitably, we found several aspects of our July experience quite tough. Each scan result or consultation required some time to process and forced us to come to terms with a new reality. We were incredibly lucky to have so much dedicated effort on our behalf from such impressive experts, and their candour was also welcome: still, each time we had to come to terms with the implications. There was an operation to recover from, and that involved further intake of steroids, which as usual adversely affected how I behaved with my wife, inflicting additional strain on both of us.

 

Also, while information was always welcome, the path forward remained uncertain. The experts made it clear that in this phase of response to cancer, patient input became more important. This was a clear message to us, and something else that required processing together. Choices would mean trade-offs. Eventually those trade-offs would becoming difficult, such as deciding how much we valued a prolonged life when that life might be painful and put strain on carers. We would need to face those choices together, while their impact on each of us could be very different.

 

Some relief became available at the end of the month. Firstly, my daughter arrived for a visit of a week, 32 weeks pregnant. The three of us had precious times together. Around the same time, all of the medical inputs somehow converged into a clear plan of action, and much of the uncertainty lifted, at least for a time. The window for surgery was probably closing, unless for a very specific purpose such as draining a new infection. Medical trials remain possible, but unlikely and with very uncertain value, and that window would close quickly too.

 

However, new treatments were available and potentially valuable. A specific fifteen-day course of radiation therapy, combined with cycles of a different oral chemotherapy, seemed to make sense. We could keep an immunotherapy, and maybe even a trial, up our sleeve.

 

This burst of simple clarity was very welcome, even though it required yet more acceptance of a reality without much major upside. I duly started the two new courses during last week. So far neither have resulted in the side effects I have become familiar with: I have experienced no itchy rash and almost no nausea either.

 

Even so, fate dealt us a new dose of reality at the end of last week. On Friday afternoon I suffered an extended bout of disorientation. I was at times confused, found it hard to locate and read signs, and lost some dexterity. Fortunately, my wife was with me for the entire episode, which may well have saved me from falls or other serious mishaps.

 

This new development is clearly of concern. At least it passed and has shown no sign yet of returning. It might have been a reaction to a specific circumstance, such as the new treatments. The symptoms had similarities to seizure activity, which is something I can protect against through medication.

 

As always, there is much to celebrate and be thankful for. Memories of June and family visits are fresh and comforting. The resolution of the phase of uncertainty into a clear treatment plan is a relief, and that treatment has been easy to tolerate so far. I can still read, and write, and sing, and pray, and much else besides. We have reconnected with our old-folks home. The episode, scary though it is, did not cause catastrophic damage.

 

Perhaps most comforting to me, the new clarity has made another choice more clear-cut. It has reinforced my desire to relocate to Europe, and soon. This choice perhaps carries a few medical risks, and is certainly tougher for my wife than it is for me, since for her the consequences will take more time to emerge and then will linger for a long time. Our shared parallel journeys to different destinations come into ever sharper focus. Thankfully, the last month, with uncertainty resolved, has helped us to reach new levels of acceptance and readiness.