This week my doctors finally reached the end of the various paths that might have lead to a more specific diagnosis, or at least progressed far enough to judge that the time had come to stop investigating and to take some action. The tumour is growing and we have been lucky so far that its symptoms have been mild.
Strangely, this change caught us off guard. We had become rather comfortable in this phase if a phony war, trying to pretend to be patient while actually rather enjoying the peace and false comfort of regular lives. So when the doctor this week talked about an intensive course of radiotherapy and the possibility of further surgery, we did not really believe how imminent this might be. That changed when a nurse from the surgeon’s department called me yesterday and told me I was booked in for an operation next Thursday.
This news should not have been a surprise at all, but it brought all sorts of supressed emotions to the fore, and for some reason this happened to my family more than me. We thought back to the previous biopsy surgeries, the Russian Roulette analogies, the hurried preparations and goodbyes, and the unwelcome visits from medical professionals bearing bad news. At least this time in MSK I expect the communication to be better, and to spend more time in something resembling a bed in a ward rather than a corridor cramped with refugees.
A part of the disappointment is the confirmation of a reality we have always known but somehow hoped might disappear. Nobody has tried to disabuse us of the notion that this is a high grade growing malignant tumour, and what the typical outcomes for such things entail. But while the investigations continued and while the symptoms have stayed stable, there was a space in our brains for irrational hopeful thoughts.
We should be happy. We want to fight this tumour and to enjoy more happy months like the one we have just had, and we can’t expect our luck to continue without some sacrifice. Bring it on.
This phase of feeling very well but under mortal threat has had some unusual features. Most obvious has been the magnification of all emotions, creating an intensity of experience that is remarkable, no doubt enhanced further by the effects of the steroid medication. We read about experiencing every day as if it is our last, and that has certainly turned out to be the case for me during this period.
Part of that has come from reacting to how others have perceived me. Many have been thrown by not finding me sick, and for others who have encountered me multiple times this has entailed a humorous progression. The reality undermines assumptions. This started during my first hospital visit, when I was wrongly assigned red socks upon arrival, a code that I now know indicates a patient in acute danger who must be watched closely at all times and not permitted to do very much on their own. It took the medical staff several days to realise that I was no such patient, and their attitude moved very gradually from a sympathetic caution towards accepting my offers to help on the ward.
The same has happened with others, even with my wife. I am at a slightly increased risk of a catastrophe, and should not be reckless, but it is also healthy for me to live my life as normally as possible, even to the extent of swimming, and certainly to include doing the shopping and washing and general household chores. The result has been a sort of hybrid arrangement at home, where by now I can contribute fully to the work, but where if I am away from the home I am expected to sign in hourly via whatsapp to confirm that I am still OK. I guess it is a sign of love and I am happy to play along with the regime even if it seems inconsistent.
Most interesting, and most rewarding, has been how people talk to me. I no longer make such a point of telling everybody about my illness, but one way or another many people know something serious is going on in my life. That can act as a conversation starter.
It doesn’t work with everybody. One slight surprise is that medical professionals tend to avoid such conversations. They are trained to deal with physical sickness, and when I display the opposite, they are flummoxed and clam up. Even if I offer an invitation by referring to my emotional upheaval, the response is usually something that deflects conversation. Perhaps they hear too many stories and need to preserve their own sanity. Perhaps they are cautious about overselling their skills.
The other groups that are usually clueless are young people. Typically, they have no idea what to say so they say nothing, which I guess is not the worst response. Even so it might be a lost opportunity to build some life experience that might be valuable one day. But the Instagram generation does not generally seem to have the skills to respond to the situation.
But many people have a lot to say, and by and large I find this welcome. In most cases my situation seems to induce people to turn the mirror on themselves and to share their own stories and feelings. Two priests have shared the sacrament of healing the sick, and in both cases I have learned a lot more about them as a welcome consequence. The nuns at the home where we volunteer have displayed their wonderful humanity and wisdom, and the comfort they have offered has been deeply helpful, even when I struggle to accept the doctrinal side of their input.
Many people have been anxious to share their own medical stories. These stories have various themes, and the purpose of sharing ranges from trying to give me comfort to talking through some anger or confusion. Many people have suffered misdiagnosis, but often with the pleasant consequence that a projected early death did not materialise. I can conclude that medical science has come forward a long way but still has further to advance. Given what I know for sure about my own condition, that only offers me a limited reassurance, but I do not rule out anything. I also conclude that going too deeply into the medical side can be a bit of an unproductive rabbit hole.
The more interesting stories so far have been the emotional ones. Sometimes I have been able to steer a medical story towards its emotional aspects, and that has usually made it more valuable for me and, I sense, for the narrator too. But many people have surprised me by sharing their emotional stories without prompting from me, and I feel privileged whenever that happens.
One lesson for me is often I will underestimate the depth of the experience of others, and how such experiences can help to guide our own philosophy. Many people who have lost a loved one in a cruel way, or lost a child, or somehow recovered from a near-death medical condition, and these people have found their own way to cope. Central to this often seems to be a more accepting attitude to the prospect of their own death, and that revelation has invariably helped me. The stories are not always comforting, since some people seem to almost will their own death as their solution to their grief, and I certainly would not wish that attitude on anybody, certainly nobody close to me. But there is still a cleansing power to such raw emotion.
One theme from the people sharing these stories seems to be calm acceptance. It is hard to imagine such a refreshing change in philosophy coming about in somebody consumed by anger or bitterness. In my own case, I am continuing on the quest towards finding acceptance and peace, and helping my family along their parallel journeys towards those same goals. The experiences of others can only be helpful along the path.
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