By Sam Alexandra Rose
Sam guest blogs regularly for Bowel Research UK, sharing her experiences of bowel cancer and Lynch Syndrome.
Fear and anxiety around scans – also known as scanxiety – is a common experience among those of us living with and beyond bowel cancer or other bowel disease, or indeed with many other health conditions. This can be experienced any time, whether it’s when an appointment letter lands on the doormat, when the hospital calls to book an appointment, in the days leading up to attending the appointment, sitting in the waiting room, having the scan or test, waiting for the results, receiving the letter or phone call with the results, going to follow up appointments, or even knowing that sooner or later the whole cycle will start over again. The feelings themselves can vary and may include worrying that a condition has returned or gotten worse, feeling apprehensive about going through an uncomfortable or painful procedure, and feeling sadness or fear induced by memories of previous medical experiences.
If all of this sounds familiar, you’re not alone. I’ve put together ten things I try to do in order to stay calm, reframe my thoughts, and cope with scans, tests and appointments while balancing this medical world with everyday life.
1. Observe the feelings and let them go
When I get a phone call or letter from the hospital, my stomach does a little jump as I anticipate – or dread – what’s in store for me. You would think I’d be used to it after twelve years, but I still feel anxious and afraid before every scan or test, from the initial phone call right through to getting the results. And these feelings are normal. So when I feel the panic wave over me, I try to remember that it’s a normal reaction, and to observe it – then let it go. Then I try to reassure myself with whatever logical reasoning I have – we’ll cover that a little later.
2. Do the admin, but do it your way
Write the date of the test or procedure in your diary, but remember that just because the doctors call it one thing, doesn’t mean you have to give it the same medical name.
So for me, “MRI head with gadolinium; MRI whole body” becomes “brain and body pics” in my diary. It just sounds nicer, and more like how I would phrase it. I find that trying to be funny helps.
I also try to call appointment letters “invitations” instead. This helps me reframe it because I’m reminding myself that I have a choice – I don’t have to go to the appointment, but I am choosing to because it’s ultimately good for my health. It also makes me feel like I have a little more control over the situation.
3. Book time off work
Book whatever time off you need from work or other obligations as soon as you can. Carve out that time for yourself and make sure you give yourself as long as you need where possible. I also ask my partner to book time off work to accompany me, which relieves the stress of driving and parking, and makes me feel less alone.
4. Count how many weeks away it is
Get a sense of time so that you can see how far away the appointment is and what’s happening in between now and then. Having that visual representation helps me to focus on one day, one task, and one event at a time. That way, the appointment and other obligations don’t feel quite so overwhelming when all piled together.
5. Realise you already know the order of things
Remind yourself of what you already know. If I have an appointment in a month’s time, I might tell myself: “You have done this before. You know the drill. You know you will forget about it (or as much as possible) for three weeks, because it is a month away. You know it will enter your mind again more prominently a week or so before. There is no need to summon it again until then.”
6. Realise that getting an invitation changes nothing
If you get a letter to go to a routine appointment, this doesn’t mean the cancer is back. It doesn’t mean anything is wrong. It doesn’t change anything. It just means your healthcare team is continuing to look out for you. When I tell myself this, an appointment letter can feel less daunting.
7. Realise that having a scan changes nothing
What’s happening in your body (or not) will be happening in your body (or not) regardless of whether anyone looks at it. It is not the looking that you need to worry about. If a tumour grows in a pelvis and nobody is looking at it, does it still grow? Yes. But equally: If there is no tumour growing in a pelvis and somebody decides to look for it, does it then begin to grow? No.
8. Return to the day-to-day
Revel in the comfort of routine. The weekly pub visits or shopping trips or meetups with friends or good television shows. Enjoy the short-term, nice events: the Valentine’s meal out, the road trips, the birthdays. Be mindful. Focus on the present moments in between scans.
9. Manifest a good outcome
One thing I always try to remember is that thoughts aren’t facts. Just because I imagine something bad happening doesn’t mean it will. Despite this, we all imagine the different possible outcomes. If you’re going to inflict a made-up future scenario on yourself, try to make it a positive one. We might imagine negative outcomes without thinking about it or questioning or thoughts. So question them. Why am I imagining the worst? What if something good happens? What would that be like?
10. Choose a mantra
The US organisation Stupid Cancer uses the slogan “Get busy living”. I like to think I am busy living with CMMRD. “Take control of CMMRD” is another idea I like. Choose a mantra that rings true and makes you feel good – whatever feels like an acknowledgement of both your medical situation and your life and identity as a whole.
I hope these tips have given you some ideas for coping with scanxiety. They are things I am still working on myself, but by writing them down and sharing them, I feel more mindful about the steps I’m taking to control my emotions, and more positive about being able to do so. Therefore, hidden tip number eleven is to talk about your feelings to someone you trust or who understands.