The last few weeks have taken a circuitous route to added uncertainty. I had my second MRI in Portugal in mid-March and met the oncologist a week or so later. We could hardly believe our good fortune when we were told that the tumours had not just limited their growth, they had actually shrunk by about 20%. I didn’t think such shrinkage was even possible at this stage. We have ruled out further operations and the more experimental treatments, and radiation has reached its toxicity limit. But the absence of worsening symptoms suggests that something is working. Although shrinking tumours do seem too good to be true, perhaps the current treatments, maybe with one more new chemo, can limit tumour growth for some more months, as I approach my third summer with cancer.
This has been an emotional few weeks for other reasons as well. My wife spent the last week of March and the first week of April back in New York, sorting out the closure of her job while spending time with family and friends. We both found this separation tough to handle and we are pleased that it is over and that we are reunited in Portugal. My sister was kind enough to visit me here during most of the time while my wife was away, and the timetable also allowed for another friend of my sister to visit too. We were further blessed by a week of lovely weather, ushering in a new season after an unusually cold and wet March in the Algarve. We are now eagerly awaiting a glut of other visitors during the next few months. With each month that passes, the villa and our new surroundings feel more and more like home.
For all the excellent health news and the welcome company of my sister, emotions have run high. The first and last days of separation involved many tears on both sides of the Atlantic, as we were both reminded of the reality of our situations and what must lie ahead. The period of separation brought our respective fears to the fore. Perhaps in both our cases the greatest fear might be loneliness.
I was only alone for a couple of days at each end of our separation, but they were long, tearful days. I had to cope with being semi-marooned at home, being unable to drive safely and with no simple, safe walks available. Our neighbours kindly visited a couple of times, but the days, and the evenings and nights, dragged on anyway.
Amid all the tears came many thoughts and questions. Although collapse and seizure are always possibilities in my condition, I did not really have those type of fears at the top of my mind. But how would I cope if the separation was extended, perhaps due to flight delays? If I was living alone and with health vulnerabilities for an extended period, how would I cope? Would I be able to settle into a tolerable routine? And how could I cope with the loneliness?
I wonder if my wife was considering the same or similar questions, but from her own future situation. For all of my good health and positive indications, the cancer is still highly likely to disable me progressively and then to kill me. But what about my wife? The caring months as I decline will probably be tough, but the real difficulties for her may only kick in once it is all over. No matter how long things last, no matter how surrounded she will be by supportive family and friends, I guess that loneliness will be her toughest challenge and will be difficult to shake off. As usual, we are preparing for different futures, helping each other as much as we are able.
Once we were joyfully reunited, this past week still had another challenge for us, when we had an e-meeting with our New York oncologist. Whether he was dealing with different photos, different technology or different skill sets, he did not subscribe to the idea of tumour shrinkage, but instead saw some progression which might indicate different treatments. He will now connect with the local oncologist and make recommendations.
As usual it took us a day or two to process the new information. But we could both understand that the general tenor of the news was more positive than negative, and that in itself is quite remarkable after two and a half years of living with glioblastomas. Whatever lies ahead, fortune has been kind to us.
There have been many lessons to learn from these unusual weeks. Regarding the shrinking tumours, perhaps we can reflect that when something seems too good to be true, it often is. If available, multiple medical opinions can help everybody. I am delighted that we have managed to avoid slipping into anger and blame over the seemingly inconsistent medical interpretations.
The wider lessons might be about separation and loneliness. In a loving couple, especially one with at least one vulnerable member, loneliness is a frequent reality and constant fear, more of a concern than pain or even death. A loving partnership finds ways to cope, but fear of loneliness can come to haunt both of the couple. There will come a time when the survivor feels utterly alone. No matter how prepared the couple are, that will help.
For people not living in a loving couple, these fears are likely to be worse. Many people we know are ageing alone. Living alone suits some people well, but coupling does offer enormous benefits for many of us. As I continue to observe people separating in their 50’s, I do hope those people don’t come to regret their decisions
