For most of us, anniversaries are more often memorials of tough times than celebrations. My mother became a widow on March 16 1976 and worshipped that date for the thirty six years she lived for afterwards. I tried to remember to call her on that date every year, and she had a ritual of visiting the room in the Eastbourne crematorium where they keep a book of remembrance. It was nearest thing she ever came to spirituality.
Now my cancer journey is at its first anniversary, and I wonder if, depending on how long it will continue, certain dates will assume importance for my wife and me. This week certainly bears remarkable similarities to the start of the journey, since I am back in hospital.
It was today, 12th October, last year that I had the appointment with the neuro-opthamologist, in which he identified the brain as the root cause of my peripheral vision issues and advised me to check into urgent care the following day to find out exactly what was going on. That trip to urgent care led quickly to a CT scan showing a mass, then a more conclusive MRI that night, and the first biopsy five days later, involving six nights in hospital in all.
That set off twelve months of trials, starting with steroid land, the second even less optimistic biopsy, the long period of inconclusive diagnosis, the third hospital visit just before Christmas for the major operation, then the intense radiation therapy followed by the seven rounds (so far) of oral chemo. I have been lucky, because the basic cancer has not developed at all and has even been supressed for now by all the treatments. I have had a few little setbacks, but have generally felt quite well and able to continue a pretty normal life, with only the minor inconvenience of not driving and the various bouts of nausea and fatigue to put up with.
Then this month has been a bit tougher. The last chemo round was a bit harder to tolerate, and one of the occasional side effects, itchiness and rashes, came up. I had pills and creams on hand to deal with that, but it did lead to unusual levels of fatigue, before a new problem emerged via a swelling near the site of the original incision. Initial antibiotics did not clear it up, so last Thursday I was requested by my oncology team to report once again at urgent care. That has led to another minor operation and seven nights so far back in hospital, making seventeen altogether in the calendar year.
Even though I am in a different hospital and being treated for different symptoms and issues, the similarities to that first six-night hospital stay have been uncanny. It is not an experience I would recommend.
The parallels start in the urgent care department. The first time I drove to Long Island and parked the car there and left my stuff in it, all rookie mistakes. This time I went by subway and remembered to bring lots to read and very little else. Both times, the urgent care environment resembled a crowded bus terminus, teeming with people but achieving very little at any pace. This time I sat in a waiting room for a full six hours, during which little was achieved beyond the insertion of an IV line and drawing of blood, and rudimentary interviews with many people who did not seem motivated to communicate with each other. At least this time after the six hours I was actually placed in a real bed in a real ward, contrasting with earlier experiences languishing in other waiting areas and corridors.
So we come to the ward experience, also full of parallels. The rooms were probably designed for single occupancy, but long ago subdivided as twins. The patient rooms are overloaded with equipment and the neighbour is always too close and usually seems to prefer permanent junk TV on full volume. But what else are they supposed to do, especially if they are doomed to remain in the same dismal place for weeks on end? On this visit I am now in my fourth room, an improvement on the eight (including corridors and waiting areas) of my first hospital stay. Even so, being moved around is always unpleasant.
The equipment is plentiful and sophisticated, but still somehow flawed. Despite all the buttons and options, I have yet to feel comfortable in bed for a single moment. The machine dispensing fluids into my IV often beeps, perhaps because I moved my elbow microscopically or perhaps because of a tiny bubble in the bag. I have learned the trick to stop the beeping, but sometimes that only offers relief for a minute or less. And my neighbour often has no such trick available.
There are long spells of boredom, but also many visitors, often during the night. Some visitors have a routine task to perform, some have the job of checking up on me, and some are the real decision makers, whose communication skills are decidedly mixed. Most staff are friendly enough and many are lovely, they have their own priorities and inevitably deprive their patients of peace.
Just like during my first stay in hospital, an initial burst of tests and an MRI led to the conclusion that I needed to stay for an operation, for which I had to wait for a space in the schedule to open up, aware that other cases would have higher priority. Then, in both cases, the operation experience showed up other features of the hospitals. There is some preparation on the ward, then a spell in the pre-op area, where not a lot happens. Then I am wheeled into an operating room, put to sleep, and the next thing I know I wake up in the post operation recovery unit, an oasis of calm. This time, as has happened at least once before, my post-op residence lasted through the night, until a new home was found for me back on a ward.
The day or two after an operation are the most physically discomforting, at least in my case where the operations have been to my head area. It takes many hours for the post-anaesthesia pain to even start to subside, but there are still machines and buttons and wires everywhere, plenty of visitors, and not much real news. Then today, two days later, comes the welcome turning point, with a lot less pain and the start of talk about recovery, getting home, and next steps.
There are other uncanny similarities. The food is remarkably good. The fellow patients cover the gamut of resignation, anger, pain, boredom and a sense of life ebbing away. The staff embody humanity in all its richness too. And the extreme hierarchy among the staff is plain to see, including power exuding from some uniforms and even the physical features of groups at different hierarchical levels.
As usual, the emotional journey is as taxing as the physical one, but here perhaps my enhanced experience has helped me. For sure during the first visit to hospital a year ago we were excessively fearful, frantically preparing for a possible sudden death and attempting goodbyes and its contingencies. Such thoughts were present again this time, and inexplicable floods of tears still emanate, especially early in the mornings, whether out of fear, dread, love, thankfulness or some combination. But together we have kept our emotions in check better this time. Thankfully, things seem to be trending in a positive direction, and that last phase unleashes the same flood of thankfulness.
Are there any lessons from all of this? Staying out of hospital must be one, but hardly a very practical one, because if we are sick then we need treatment to get better. Getting angry should be avoided if at all possible, but can be difficult when in pain and filled with fear. Enduring hospital without a loving partner must be horrible, and must also inhibit recovery. It is always right to maintain the balance of hope for the best and preparedness for the worst. And, most of all, it helps to feel thankful.
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