We were nearly at the end of January 2013 when we would get Abi’s latest scan results. She had begun inventing her own words and funny phrases. They made me laugh; particular favourites were, “Stop it, you crazy shing-shang!” and “I’m not an angel, I’m a plunky!” Her high spirits convinced me that only a healthy child could be so creative. I imagine looking for signs of hope in anything and everything is a common trait of parents whose children have serious illnesses. But Abi did seem remarkably healthy. Moreover, she had undergone six months of alternative treatments and I was hopeful they had done something good.
Cancer patients (and their carers) have a term that describes the nervousness felt as scan time approaches - scanxiety. Quite simply, it’s the feeling of terror and dread experienced while waiting for results that might signal the return of serious illness.
I first came across the term when someone posted the following question on the Paediatric Low-grade Glioma Facebook page:
Scanxiety. How do you all handle it? We have another MRI on Friday and I just get so anxious in the days leading up to it. Even when I try not to think about the scan, the nervousness doesn’t go away. Any tricks? Or is it just something to get through each time?
The answers reveal, as scan time approaches, the high levels of stress experienced by parents:
I go over the positive improvements my son has made since the last scan. And tons of prayer. And a glass of wine doesn’t hurt.
I move rocks. Or paint things. Or just freak out and hide from humanity.
I just want to get it over with so we can continue treatment with confidence or switch to another and kick some tumour butt.
Remembering to breathe. And taking a hot shower helps.
Bake? Clean obnoxious closets?
Even when I’m sure I’m not anxious, it creeps in at some point. There is no magic trick. I tend to not sleep well, go into organising overdrive, and have a few glasses of wine.
It never gets better…just try to breathe.
We go away to the beach before every scan!! Works wonders.
I try to look at her every day and just be thankful.
I am sitting on the couch sick to my stomach with a migraine, I am so tense about it. The whole house seems to get tense around the time of scans, even my younger boys.
I do terribly with scanxiety. The last few times have been bad news for us, so I think next time it will be even harder for me.
I fall apart every time.
I recognised many of the emotions expressed by those parents. However, I realised that I did not have much of a strategy for coping with the stress of regular scans. I think I had just accepted their inevitability. I suppose I had got used to the idea that I would get increasingly anxious, and just like one of the parents above: “Slowly freak out and withdraw from humanity.”
But I wonder if, by ignoring the nerves, I had allowed them to affect me physically too? One weekend, not long before a scan, I had helped a friend build an impromptu disaster shelter on some land he owned. I was glad for the break. I had been getting more nervous as the scan date approached and the weekend helped me forget all that. We had a lot of fun during the build, and I think everyone there enjoyed putting the world to rights by the camp fire. But on the drive back, with nothing but my own thoughts for company, I began worrying again. That evening I was sick. At the time, I blamed it on a lack of hygiene at the build. But now I wonder if it was due to the increasing stress. When I woke the next morning, my girlfriend had already gone to work. I felt terrible; nauseous, but also alone and afraid about the prospects for my daughter. Completely out of sorts, I ignored the lovely note left for me ( hoping that I felt better), and proceeded to send a particularly unfriendly text. I sent another one shortly afterwards, just to make sure my girlfriend knew how bad I felt. My mood didn’t improve as I continued to worry and later in the week I sent yet another unfriendly text, just to make sure my girlfriend felt awful. Why do we take out our fears on people dearest to us? A friend of mine commented that: “Relationships are a minefield, they bring out the best and the worst in us”. That’s especially true when you are under added stress from elsewhere. Yet another result of scanxiety.
The thing that upset me the most about that little episode was that I tried to explain my behaviour on Abi’s impending scan, and thereby, on Abi herself. That was wrong; I love my daughter dearly, and she is entirely blameless for any of my mistakes. Her illness is our truth, and I should not never use it as an excuse. No-one else was to blame for my mood; I was aware that the forthcoming scan had made me anxious and should have taken steps to deal with that anxiety.
During the week leading up to Abi’s latest scan, my scanxiety increased. But the events above taught me that I needed to act to deal with the stress. Otherwise, my health suffers, the people around me suffer and I cast blame when I should not. So I began meditating on being given good news instead of focusing on anything bad. To help me cope physically, I re-established my morning yoga practice. And when I caught myself worrying, I shared some of my concerns with friends. They were glad to help. I started playing lots of guitar, too. I may have made a mess of yet another relationship, but some good came of it all; I began taking steps to deal with scanxiety.