Sunday, 6 May 2018
Coping With ‘Scanxiety’ During & After Cancer Treatment - by Dr Lauren MacDonald
Anyone who is currently in remission from cancer, in the midst of cancer, or has a close family member or friend with cancer, sadly knows this term only too well. ‘Scanxiety’ essentially refers to the anxiety generated by follow-up scans (MRIs, CTs etc) which are used to collect new information about your hidden inner world every few months.
For anyone who thankfully hasn’t yet been touched by cancer, scanxiety is not dissimilar to the apprehension you experience whilst waiting to find out if you’ve passed an exam – you just need to multiply that ‘I’m-so-nervous-I’m-going-to-vomit’ feeling by about 100. Because sadly this kind of exam isn’t like any type of school exam or driving test – one which you’ll get the chance to retake and potentially pass another time. If you fail a follow-up scan (especially badly enough), it might well be game over in the long run.
Personally I’ve had a mixed experience with scans; over the last nine months I’ve gratefully been on the receiving end of three incredibly positive scans, but it’s not always been happy news. Unfortunately I found out I’d progressed to stage 4 (meaning the cancer had returned and had spread to other areas in my body) via a phone call after one particular routine scan at the end of 2015. At the time I’d gone back to work in a GP surgery and I answered a call on my mobile between patients. It turned out that it was someone from the administration department at the hospital telling me about the ‘urgent biopsies’ that had been requested due to my scan results.
Scan results? What scan results? I was due to see my Oncologist the following day and my parents were currently driving from Devon to Brighton in order to be with me for the results. Yet, unfortunately, here I was being told that it was highly likely that the cancer had returned (and spread), whilst I was at work and very much on my own. The non-medical person on the end of the phone also had absolutely no idea what my scans had shown or which organs I was having biopsied which inevitably left me thinking the worst. I left work immediately, convinced that I was riddled with cancer. Needless to say, that was not a good day.
I did have another negative scan back in March 2016 (which showed that the tumours were still growing), but at least I received that news when I was slightly more prepared. For starters I already knew that I had tumours in my body (and that there was only around a 30% chance that the treatment would get rid of them). On this occasion I also received the bad news whilst sitting in a hospital room with my oncologist and my mum – instead of via a phone call whilst at work. Having said that, no matter who is by your side (or where you are) when you get the results, scans are always going to be life changing, one way or another. It’s essentially like having a life sentence read out to you by a judge/oncologist. Naaaat so much fun.
Although I’ve got much better at coping with my ever-looming scans, once I’m within the two week window period (which is where I am now) I inevitably feel the anxiety creeping in. I tend to start thinking about cancer more often, my sleep gets increasingly disturbed, I break out in spots, and I generally feel more exhausted and on edge. And because the mind-body connection is so incredibly powerful, I also start getting all sorts of aches and pains in my body. This month I’ve had terrible headaches (? a brain tumour – FYI: I’m 100% sure that looking at brain tumours on scans all day at work is fuelling this particular symptom), whereas previously I’ve been convinced a dull ache beneath my ribs meant that the cancer had spread to my liver (fortunately it hadn’t). These symptoms also seem to miraculously disappear following my scan results. I like to think of myself as a pretty chilled person but I definitely feel myself losing the plot a little around scan time!
I can’t help but wonder how on earth other more tightly wound people manage to cope with the stress of scans. I’m not surprised that several studies have revealed that follow-up scans can trigger classic symptoms of post-traumatic stress disorder in cancer patients and survivors. Of course it is completely normal to experience anxiety due to scans, but the key is to be able to take steps to prevent these emotions from causing unnecessary distress. As a result, over the last few years, I’ve developed a few tricks for trying to keep myself sane before scans. Here is a list of things that sometimes work for me:
My top tip around scan time is to just keep reminding yourself that worrying about the scan achieves nothing. I used to waste so much precious time and energy worrying about the potential outcome – until I realised that it was just draining me further. Try to remember that the results will be the same whether you worry about them beforehand or whether you don’t. I know it’s easier said than done, but try not to worry.
I really do believe that the Universe is in charge. As humans, we tend to believe that we know the path our lives should take and we think that it’s up to us to steer our lives in that direction. And that is true – but only up to a certain point. Sometimes you just need to surrender to the Universe – because once we surrender and trust that there’s a bigger plan for us, things start to feel a whole lot easier. I promise.
I know most of my posts mention ‘mindfulness’ somewhere within them, but it’s because it really works as a practice. Mindfulness essentially means focusing fully on whatever action you are doing – allowing yourself to be fully in the moment. Whether it’s brushing your teeth, looking at a sunset, or taking a yoga class, moments such as these slow us down and give us the chance to experience some much-needed inner peace.
Please don’t take this the wrong way. I think the first instinct, for both patients and friends/family, is often to try and come up with a positive spin. Personally my pet hate is when people tell me to “think positive!” prior to a scan. Many cancer patients feel under pressure to try and buffer potential bad news with a dose of positivity – but any positivity has got to come from the heart. There’s no point faking positivity in front of people if it’s not true, surely that’s just more stressful? Having said that, whilst positive thinking alone can’t cure cancer, I do believe that attitude is critical to getting through the process and growing as a person. It’s a daily note to self: I’m going to beat this. I know plenty of people find them really annoying but I LOVE an affirmation. I regularly save ‘gems’ that I see whilst scrolling on social media and then look back over them when I need a boost.
Please don’t take this the wrong way either. I’m definitely not against remaining positive but I think it’s important to remain a realist too. As highlighted in her book “Bright-Sided”, Barbara Ehrenreich explains, “We need to brace ourselves for a struggle against terrifying obstacles – both of our own making and imposed by the natural world. And the first step is to recover from the mass delusion that is positive thinking”. Essentially she raises the question ‘at what point does positivity become a form of denial?’. I try to remain pretty neutral prior to my scan results – I don’t let myself get my hopes up that I’ll automatically be granted another clear scan but I also don’t freak out that I’m going to be riddled with disease. I know people claim you can ‘think cancer away with positivity’, but I’m not part of that camp.
Although I’ve been trying to live a more minimal lifestyle over recent years – 1) because you REALLY can’t take all that junk with you to your grave and 2) because our consumerist society is destroying our planet – I do usually treat myself to something special (usually a piece of jewellery, a trip away, or even just some extra luxurious bubble bath) before and/or after a scan result. Whether it’s good news or bad news, it helps a little
As I learnt the hard way, having people who love and care for you beside you during your scan results appointment is crucial. I feel desperately sad for anyone who has to go through cancer treatment alone. If you know any neighbours or friends who are currently in this situation please, please offer to go along to their scans/appointments/treatments with them. It won’t take much out of your day and it will likely mean the world to them.