Wednesday, June 17, 2020

On scanxiety

Photo taken in Italy last year - my first swim in the sea since my diagnosis

the marks on my back after a session on my 'bed of nails'

"All patients have complicated relationships with their scans [...]. We first learn we have cancer from scans, then learn from them if that cancer has shrunk or disappeared, then learn if it has come back. Scans are like revolving doors, emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we're in for another trip to Cancerland; land on black, we have a few more months of freedom." - Bruce Feiler

I am so relieved that I have 'a few more months of freedom' before my next appointment.

Cancer - or rather my own cancer - hadn't been on my mind that much until the scan date approached. Other things, both in the world at large and my personal life, have been taking up a lot of my mental energy, and when I veer towards fear I ground myself in activities I love, such as painting and reading. My cancer-related thoughts are mainly with people I know who are facing tough decisions or are running out of options. Right now I am lucky.

And yet, knowing too much about my diagnosis, the awareness of the high risk of a recurrence is always at the back of my mind. My therapist once said that any fears we have as humans, when peeled back, ultimately reveal a fear of death. And scanxiety is pretty close to that original fear.

While I was calm overall, the week between the scan and getting the results I felt the familiar tension, and since the scan the fatigue has been acting up.
The scans that fall into June are also a painful reminder of what could have been, as my due date was June 30, 2018 - instead, around that time I found myself at my lowest during chemoradiation for the inoperable lung cancer I had been diagnosed with as a fit 34-year old non-smoker (I did have surgery as well, but it is not the standard protocol for the type of stage III the cancer was). I was propped up on our daybed, unable to move and with excruciating side effects that many people would find TMI.
In December 2017, after a week of bleeding, I had braced myself for the 12-week scan at the gynaecologist's, willing the image to show growth. Fast-forward to my regular oncology scans, and it is the opposite - staring at different black-and-white images at appointments during treatment, looking for shrinkage and disintegration; the fear when the lymph nodes didn't respond as hoped; and now, post-treatment, always wishing for a 'nothing'. And repeatedly having to confirm I am definitely not pregnant each time so I can have the CT scans.

But all of that is a small price to pay for being able to live a fairly normal life, or a 'new normal' post-cancer life. 

Something that isn't talked about that often is how scanxiety also affects those close to the patient. In fact, it can be worse for family members or spouses. My deepest worries are about how my diagnosis affects John and my family, though I try not to entertain the spiralling thoughts about what might happen. And I am no stranger to what it is like for close relatives - my dad died of cancer and my mum was diagnosed after me. The feeling of helplessness and the fear are definitely worse when it is somebody you love, and I am feeling both right now, as my mum has to have a biopsy because her last check-up didn't go as we had hoped, so there is more waiting.

These days I am frequently reminded of 'lifeshocks' - they keep coming. 

My coping mechanisms include my usual rituals and this time especially the return to sea-swimming and my new 'bed of nails', aka an acupressure mat, a birthday present from John, who knew I wanted one. I sometimes do yoga nidra while on the mat and often fall asleep on it.

Creativity is another tool, and Julia Barnickle's wise words soothed me when I felt overwhelmed. This is what she has to say about scanxiety and anxiety in general - I aspire to her serenity. She also uses the exercises from The Artist's Way and believes creativity to be an important part of her healing.

I read an interview with an actress whose brother had died, and she talked about how around the same time work got very busy for her and the shock gave her a surge in energy. Looking back over shocks big and small I find that to have been true for me at certain points - trauma often paralyses you, but sometimes it can fuel your creativity and productivity.

Speaking of creativity, I am grateful for all the commissions coming my way and am donating half of the money from art sales since my return to work to charities and to our local cancer centre, which has been a great support for the last two years.  


Here is another article on scanxiety, including tips on how to cope with it.

Also, it would be lying by omission if I didn't admit that sometimes the only thing that works to pause the thoughts is binge-watching a series (most recently Self-Made).