Life

Dogged by the uncertainty of incurable illness, is there comfort in sometimes not knowing test results? By Georgia Blain.

The Unwelcome Guest: Waiting, knowing and MRIs

Head and neck MRI scans.
Credit: KONDOR83

Lately, I have been thinking a lot about my mother’s resistance to being diagnosed with Alzheimer’s. Both she and I knew that something wasn’t right. I pushed her into finding out exactly what was wrong.

A geriatrician, whom she’d never met before, delivered the results of her MRI and her neuropsych tests. He was a kindly man, bearded and jovial, but he didn’t know my mother and the best way – if there is a best way – to deliver the news to her.

At first she tried to argue. She wasn’t interested in what the MRI had shown, but she took issue with the psychology tests. She was tired on the day, she wasn’t feeling well, and she got stressed and anxious.

He told her bluntly that the tests took stress into account, and that the results were as conclusive as could be.

I’d pushed her for a diagnosis because I’d become increasingly worried about her over the preceding couple of years. It was more than simple forgetfulness – whole concepts, such as time and numbers, had slipped away.

But I’m still not sure whether I was correct in subjecting her to the tests, and to naming an illness that has no cure.

There are two main reasons why we seek diagnosis – there’s a very human need to know, but, more importantly, identifying an illness can often point us in the direction of what can be done.

Alzheimer’s, by its very nature, makes grasping the illness and its ramifications difficult. Sometimes my mother knew what she had and it made her inordinately depressed. Other times, she clung onto hope – as we all do – that she would somehow defeat this illness.

There’s not much that can be done to treat people with Alzheimer’s. Aricept can slow the progression of the symptoms in some patients for a time – but that’s it. And in terms of help with living with the illness, there are no home-based aged-care services that are specifically geared to people with Alzheimer’s, who often struggle to accept strangers in their house.

So, in practical terms, there was not much benefit in knowing. And there was a considerable downside – both my mother and I googled, going deep into the mire of the illness.

It is now a year later, and I am being treated for a brain tumour. My doctors have told me it is incurable, but with treatment it may be possible to keep the tumour at bay for longer than if nothing was done.

Part of my treatment involves regular scans to monitor whether the tumour has returned.

One of the counsellors at the hospital told me that fear of scans is often more pronounced when there are no visible or physical manifestations of the cancer. Invariably, as the time approaches for an MRI, I become finely calibrated to pick up new symptoms of my tumour: headaches, pins and needles, further difficulties with my speech. I have to keep reminding myself that I am relatively well at present and that is what matters.

Recently, I had my second MRI since the chemotherapy treatment commenced. The first, I was assured, was just a benchmark – all things would be measured from here.

The second, I assumed, was more significant. I presumed it would give a picture of whether the chemotherapy was keeping the tumour at bay.

Both times I’ve had scans on a Saturday, right at the end of the day.

A hospital on the weekend is even more depressing than a hospital during the week. Smokers in gowns gather outside the entrance, seeking the sunshine, often in wheelchairs or clutching poles with drips. Bins are overflowing, toilets haven’t been cleaned, and each time we have fronted up to the MRI reception, we have found it half closed with a sliding barricade, and a wait before I can be seen.

I can’t make small talk before the scan, so my partner, Andrew, and I try to find a chair without a smoker, and in the sun – a very difficult combination – and we sit in silence. He works, and I read, although the words float, meaningless.

When my time comes, I have to change into a hospital gown, and lay on a flat bed on my back. The technician gives me earplugs, and pads to cushion my head and further dull the sound. She explains the procedure – usually about three scans before she comes back to inject a dye into me, followed by three longer scans. She gives me a small hand-held pump to squeeze that will let her know if I feel panicked, or in need of assistance, and then she exits the room.

My body slides into a white plastic tunnel.

“Okay, Georgia,” she tells me from behind the glass, speaking through a microphone that is directly channelled near my head. “This one will last about a minute.”

There’s nothing painful about a scan – it’s just a hell of a racket, like a doof-doof party in a construction site. But when I’m in the tunnel, I feel utterly alone. There is just me and my brain and I pray to whatever gods may be that the scans will be clean, no sign of the tumour returning, no “enhancement” on the images around the site of the operation, or anywhere else for that matter.

I usually have an appointment with one of the oncologists a couple of days afterwards.

When I had my previous MRI, she was running late.

I waited, certain she was consulting with the other doctors, determining which one should tell me all hope was lost. I told myself that I didn’t want to know the results. What was the point? If the tumour was returning, there was not much that could be done. I would likely progress with my treatment as usual, or have to make some very hard decisions about going into the riskier territory of less-tried drugs. And if hope were gone, what benefit would the knowledge be?

But of course, my first question was whether she’d seen the MRI.

It seemed there was a small new nodule; it could be the tumour re-forming, it also may not be. The only way to be certain was to perform another craniotomy. It was unlikely the surgeon would recommend this. It was too early, she said. I hadn’t yet finished my chemo treatment.

I was booked in for a PET scan two weeks later. This wouldn’t give a definitive result, unlike surgical biopsy, but it was more helpful than an MRI – not in terms of measuring the size of the growth, but possibly indicating whether it was an aggressive tumour.

This time I had a fortnight to wait before the appointment with the oncologist. I knew he would have my results, but I didn’t want to know. It was the first time I wanted to be kept in the dark.

I am still feeling well, I told myself over and again.

It’s hard to cling onto this when you are, by necessity, being constantly medicalised, but it’s fast becoming the way in which I try to cope – and continue hoping.

The former chief art critic of The Independent, Tom Lubbock, had a similar brain tumour to mine and died at 53. His memoir was recently published, and Andrew bought it.

I didn’t want to read it, but one night, when Andrew was out, I began hastily skimming it, racing over pages where Lubbock described his deteriorating speech, wanting to get to the end, but wanting to be shielded from it as well. I barely registered the last few pages, just a crumbling of language, and then I stopped myself from reading the preface written by his wife after his death.

But I do remember his description of waiting for the results of each of his MRIs, and the way in which he felt he was living life in “three-month increments” – the time between each of his scans.

When the time of my appointment came, the results were once again inconclusive. We needed to wait and see what the next scan would bring.

I shed one tear of self-pity for the uncertainty that I now live in, and then I brought myself back to my body as it was behaving now.

I am feeling well, I told myself, and no news was better than bad news, as it still left room for hope.

 

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 Jun 25, 2016 as "A little knowledge". Subscribe here.

Georgia Blain
passed away in 2016. Her last novel, Between a Wolf and a Dog, posthumously won the 2017 Victorian Premier's Literary Award for fiction.