The art of feeling glad to be alive
Faced with life-threatening illness, Andrew McDonald feels a need to live with urgency and focus on what really matters. But can any of us, even the dying, learn to do this?
Tuesday 08 November 2011
December 2007: "I think it is possible you have Parkinson's disease. Indeed, I think it is quite likely." August 2010: "It's cancer. You'll have to decide if you want surgery to remove the prostate." Two consultants. Two diagnoses. Two life-changing moments. A life blessed with good health stopped in its tracks, resumed – and then halted once more.
In its own peculiar way, I received the first judgement as though it were a benediction. Waiting to hear my fate, my (unvoiced) question was: "Do I have a brain tumour?" I had formulated this privately a few days before, when my GP had called to say that the loss of sensation in my fingertips was not, as at first hoped, attributable to a trapped nerve in my neck. I hadn't given Parkinson's disease a moment's thought. I understood him to be saying I would live to see my daughter grow up.
In the weeks that followed, I can't claim that I retained this optimistic gloss on the diagnosis. I swiftly recalibrated my expectations, greedily pocketing the news that my life would not be sharply foreshortened. I recoiled in the face of a degenerative condition without a cure.
But as the weeks turned to months, I began to reach an accommodation with my new foe. It did not pose any immediate threat; the early symptoms were trivial. And the prospects of another 10 to 15 years of more-or-less unhindered life were encouraging. A much better outlook than that is given to plenty of patients every day of the week. The challenge has been to keep in view the realisation that my active life has been cut short. And to act on that imperative, making the best use of the interval before the Parkinson's is demanding of my attention. In practice, the risk has not, so far, been the disruption of my work or my leisure. But rather it has been my failure to absorb fully that their disruption will occur in time.
By August 2010 the Parkinsonian symptoms had become tiresome but my quest for a "normal" existence had been, by and large, successful. Chronic insomnia is unquestionably debilitating, but with practice it becomes wearily manageable. The immobility in my left hand might shorten my emails, but that might be a benefit, not a burden (not least to their recipients).
And so it was with the continued delusion of "fitness" and "normality" that I went to hear the results of my biopsy for prostate cancer. I had chosen to regard Parkinson's as a second-order problem: I'd come to it when I was ready to do so. Its own timetable was almost kindly in its languor. Insofar as I had been moved to action, I had been prompted to draw up an increasingly elaborate plan to swim in freshwater lakes around the world – taking my chance while I was still able.
I was more or less expecting cancer to be confirmed. But the test results were far from terrible. As another consultant would later say, "there is nothing urgent about prostate cancer". Somehow I seemed to have chanced across a second ailment with a forbidding reputation that carried no immediate threat to my well-being. And this one couldn't rouse itself to exhibit symptoms of any sort.
And so I was able to take my time over the dizzying choice of treatments. Until, that is, everything became urgent: my test results suddenly took a turn for the worse and surgery became the only plausible option. Yes, I would risk impotence and incontinence. But who in their right mind was going to pass up a 97 per cent chance of cure at the first time of asking?
Still, I was not roused from my torpor. The operation was routine, the odds were good and I was young, fit and healthy. (Well, as young, fit and healthy as it is possible to be as a 48-year old with Parkinson's and a cancerous prostate gland.) The operation itself was navigated easily enough, even if some of the side-effects were demeaning and the recovery slower than I had hoped. The tumour was found to have been as aggressive as prostate cancer gets, but the surgical results could not have been better. A close call, but the episode would, surely, soon be at an end. I could return to the sleepy embrace of Parkinson's: a companion that had all but slipped out of sight while this episode was in train.
It was only when, weeks later, I received the post-operative blood-test results that I was finally driven to accept that I had an acute illness that might kill me in short order. The results were stunningly bad, the worst that one radiologist had seen in the course of a long career.The cancer had most likely spread. But it could not be found by successive scans. Cure was not impossible, but now I would have to be lucky. And I was now given a prediction of how many years I was expected to survive. In single figures. Low single figures
No need to worry, then, about the lumbering progress of Parkinson's.
It was in the lee of the oncologist's prognosis that I was emboldened to talk publicly for the first time about my Parkinsonian diagnosis. The severity of the threat to my existence had finally moved me to see if I could turn my experience to some public benefit. But note that it was my experience of the chronic condition that I chose to discuss: my encounter with acute disease was altogether too new, too raw – too threatening – to allow me to address it.
A month or so ago, I finally received a scrap of more encouraging news. I never thought I'd greet the discovery of a tumour in such terms, but the secondary is surgically removable and if it is the only one then cure is once again a prospect. As I write this I am days away from a second operation, which might open up just that prospect.
I have been pummelled into taking the threat seriously. I remain optimistic about my chances. But I have, for the first time, had to confront the possibility of an early death. At this distance, it is not the ending itself that grips my imagination. What does frighten me, if I allow it to, is the prospect of being stopped in mid-sentence. Finally, more than three years on from my first diagnosis, I have been provoked into thinking about how best to use the time left to me.
The urgency, soon lost as I came to accommodate Parkinson's, has now returned. Can I be confident that the brutal threat from the cancer will cause me to retain this urgency, focusing my time and energies on what matters most to me? No, even now I cannot. Not least because my experience of living with an acute illness is that its most certain feature is its uncertainty. For weeks and months to come I will not know if my life is to end prematurely. What I must learn to do is to cling to the simple certainty we all share: that our days are numbered.
Earlier this week, I was walking in Gloucestershire. After a false start I found the path to Cornwell parish church, tucked away behind the manor house. The interior disappointed: little remains of the original Norman structure. As I left, I glanced up at the sun dial above the south door. Like countless others it warns: Hora fugit [the hour flies]. Unremarkable enough. A Latin tag almost sucked dry of meaning by its repetition. But for me it is, for once, arresting and stuffed with meaning. Ovid was encouraging a messenger to haste. A couple of months ago I would have paid the legend as little attention as the church. As I turned back up the track, I vowed to heed his warning, whatever the coming months may bring.
Andrew McDonald is the CEO of the Independent Parliamentary Standards Authority. This article is written in a personal capacity and the fee has been donated to the Prostate Cancer Charity. Andrew's operation has now taken place and the results are encouraging.
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