The Unwelcome Guest: Going to plan
I’m a planner. I used to have detailed maps of each day or week, sometimes even a month or year, held in my brain. I was frequently guilty of issuing instructions at breakneck speed, assuming everyone was not only privy to my plan, but that they were along for the ride.
Being diagnosed with terminal brain cancer has changed all that.
I’m still capable of planning, but I’m less capable of communicating what I want to happen and when. My brain tumour affected my ability to speak, and to a lesser extent my ability to write. It is when I try to describe sequences of actions that I am most liable to come undone, unless I tread carefully.
Some of my friends may be secretly relieved that I’m a bit less able in the instructions department, but there are still moments when I become considerably frustrated.
Three days after I came home from hospital, I wrote in my diary:
My speech and my written communications are not the best. I can do short simple sentences (fortunately it’s not all that far from my preferred style). Anything more complex than that and the trail of logic, or rather the chain of words, is hard to grasp.
In the hospital I had to do a lot of OT and speech pathology tests. I remembered my mother when she was first diagnosed with Alzheimer’s, two years ago, and how she hated those questions. Fill in the numbers on the clock face, draw a cube, remember a sequence of words and later you’ll be asked to repeat them back for me, count backwards from 100 in multiples of seven.
I felt each question didn’t quite get to the root of the problem. The filing cabinets in my mind were awry, scrambled. I had enough words at my grasp that I could just duck and dodge and dart and weave. But something is wrong.
It took me a while before I realised exactly what my difficulty was.
Each time I said a sentence I had to think about every word, which made my speech much slower. In the past I had relied on various building blocks that had become so rote, I had no conscious awareness of having articulated them. Now, they were no longer there. Tenses tripped me up. Sentences that contained three or more clauses seemed as slippery as eels.
Most of the doctors I saw dismissed the problem. My vocabulary was such that I could quickly find another word. But it troubled me, and often I felt self-conscious about my speech, particularly when I felt the building blocks crumble away through tiredness, stress and having to discuss certain topics – finances, for instance – that always made me much worse.
In one of my follow-up appointments with my surgeon, he told me that I should think of myself as an elite athlete. Like Roger Federer is to tennis, he said. If Roger was injured he could still get out there on the court with a social player and win. But, just as he wouldn’t want to put an injured Roger into a tournament, he wouldn’t want to put me back into competition, just yet.
I liked thinking of myself as the Roger Federer of communication. Possibly some of my family may have thought of me as more of the John McEnroe type. Either way, no one had ever called me an elite athlete before.
Over the months, I have come to live with this slight impairment, and it is slight in the scheme of things. I have been fortunate so far – the operation didn’t make my speech any worse, nor has the treatment. The mind is a flexible thing and I am constantly forging new pathways as I speak.
But who knows what will come.
And that is the real issue. Like many people living with cancer, I feel the loaded shotgun is always there, aimed at me, ready to be fired.
When I was numb with the initial diagnosis, one of the doctors who came to my bedside mapped out the treatment plan. At the end of our conversation, he said that he was sorry he wouldn’t be able to supply me with the answers that I would probably want. We don’t know how the surgery will go, he told me, or how you will respond to treatment. It would have to be step by step.
He said that it would be hard to live with the continuing uncertainty. But you just have to try your best to manage day to day, to enjoy the good days and take it easy on the bad ones.
I came home from hospital, tired and weak, but I still wanted to plan. It was a case of old habits dying hard. I felt I needed to get ordered, and build a raft of certainty to which I could cling.
Initially I obsessed over the amount of time I had, believing it would provide all the answers I thought I needed. Would I choose to live differently if I only had a few months? What about a year? Two? Five? What if I cashed in my superannuation, spent all my money and then found I was the statistical outlier who lived with a brain tumour for more than a decade?
I also wanted to plan for my partner, Andrew, and our daughter.
When Andrew took leave to care for me, I worried about whether he had enough in store for when my health got worse.
I tried to talk finances. Like most couples, we had an idiosyncratic arrangement that involved various bank accounts, along with occasional squabbles about who paid for what, in an attempt to keep some kind of independence. I wanted to merge the lot, at once.
We also had to look at wills, powers of attorney and enduring guardianships. I began to wade through an advance directive form and felt too depressed to go any further.
I started to give my daughter life advice – irritating tips that I would dump on her at the breakfast table when she was trying to get to school.
It was a frenzy of activity at first, and possibly one that was aimed at staving off the full emotional impact of the diagnosis.
But gradually, just as I have learnt to live with the fact that I’m no longer Roger Federer at his peak, I have also become slightly better at living with uncertainty.
I realised this when I had my first brain scan following the initial bout of treatment. As I waited for the doctor to deliver the news, I told Andrew that I wasn’t too nervous. In all likelihood they would tell me there wasn’t a lot to be gleaned from these particular images. They’d already warned me that any signs of the tumour returning could be due to the treatment itself or a phenomenon known as pseudo progression, a false indication of progression that can even produce new symptoms.
Despite my predictions for how this conversation would go, I still had some secret hope that the results would deliver some kind of news, preferably good, that would give me a time frame and allow me to plan.
But the doctor said what I’d expected to hear: This was simply the new benchmark, a new measure for further progression or reduction. I questioned him, ready to latch on to any warning signs, any cause for alarm, and spent an afternoon mulling over his words. Then I realised I had to let go. The images were simply as he’d described them: a new benchmark.
Strange, how even after you’ve been suddenly told you have a brain tumour, you can still cling to the illusion of certainty and planning. I would have thought that such a shocking lesson would have jolted me into change.
So, this is what I need to learn: to make decisions that are best for me right now. And when I say now, I’m not referring to instant gratification. I want to live with hope while knowing that I do not have an indefinite time left. I also need to be flexible enough to change today’s decision tomorrow.
It’s possibly the best that any of us can aim for; but for most of us, it’s hard.
The Unwelcome Guest is a monthly column about Georgia Blain’s life with cancer.
This article was first published in the print edition of The Saturday Paper on Feb 27, 2016 as "Going to plan". Subscribe here.