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.  

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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).

Birthday, houses and home

From Joan Didion: The Center Will Not Hold (we sometimes put on subtitles in German if available, as John is learning it, or French or Spanish, as a brush-up exercise, but I put on English subtitles when I rewatched some of this, as there were so many quotes that I wanted to see in writing in addition to hearing the voice; it can add a layer of something I can't quite put my finger on)

‘I realised [the novel Play It as It Lays] was about anticipating Quintana was growing up. I was anticipating separation. […] I was actually working through that separation ahead of time. So novels are also about things you’re afraid you can’t deal with. In that sense that a novel is a cautionary tale, if you tell the story and work it out all right, then it won’t happen to you.’

Joan Didion, in Joan Didion: The Center Will Not Hold

What I paint and what I read and think about and feel, and things that come into my life without my prompting them, seem to constantly interweave in astonishing - or perhaps expected - synchronicity.

It was my birthday yesterday, and talking to my mentor and friend Margie, the themes of home and rebirth and becoming through coming home to ourselves came up. I am working on the painting above, which was also born (excuse the pun) out of conversations with Margie and inner child work (my younger sister had recommended the book by Stefanie Stahl, which is about accepting our ‘shadow child’ and thus freeing our ‘sunshine child’) and may call it 'Birthday' (also as a nod to one of my favourite paintings). 

Margie had asked me a while ago whether I had something symbolic that could represent the child in me, and while I searched I kept thinking of a blurry sepia photo of me on a beach that I had saved when my sister sent me a digital copy of it and that I had been meaning to use as the starting point for a painting. 

The book I mentioned in my last post, On Chapel Sands, starts with a girl – the author’s mother - disappearing from a beach, and the memoir is about where we come from, among other things. And incidentally, I just started swimming in the sea again last week.

The house my sisters and I spent the best part of our childhood in is being transformed into a home for my younger sister and her family, with an integrated apartment for our mum. I am so glad they will be under the same roof (the guilt of having left my tribe and moved to another country remains), but there must be something potent in the symbolism of the dismantling and rebuilding, as a lot of my dreams these last few weeks have been about home and a nostalgia for my childhood. Not being able to go to Germany at the moment comes into it as well, no doubt. There is a walk John and I like to go on here that, even though it is at the edge of wild dramatic windswept Connemara, has a softness that reminds me of the fields and ditches surrounding our village at home.

In a sense a lot of art is ultimately about the journey home; it is one of those archetypal themes that underpin pretty much everything. Yet I am still struck by how it is such a dominant thread in my reading and painting at the moment. 

John gave me the recently published Lives of Houses, a collection of essays about the physical homes of various artists, literary figures, composers, politicians, etc. and how they shaped their lives and work. And I bought (and have read the first few pages - then I put it away, as my currently-reading pile is about to topple) Elizabeth-Jane Burnett's The Grassling, about place and landscape, memory and grief. It also includes wild swimming.

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We watched two excellent documentaries that are available on Netflix at the moment. Becoming, about Michelle Obama’s memoir of the same title, which also has some moving scenes of her revisiting her childhood home and reminiscing about her late father, and Joan Didion: The Center Will Not Hold, a portrait of the iconic writer, created by her nephew. 

I realised recently that I had quite the collection of literary works dealing with grief and packed away some of them to donate, but I still have Didion’s exceptional memoirs about the deaths of her husband and daughter, The Year of Magical Thinking and Blue Nights, and I want to reread them after watching the documentary.

A lot of my recommendations these days are the opposite of feel-good escapism*; between my choice of books and TV and the themes of my paintings (and the sea-swimming!), salt water is featuring heavily at the moment!

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* We are also watching After Life.

Retreat

"Time is a box formed by thoughts of the past and the future. When there is only the immediate now - when you’re not dwelling in the past or anticipating the future, but you are just right here, right now – you are outside of time."

Ram Dass

The first photo above is from October when we were dogsitting Georgie and my nephew stayed with us, but it is a good reminder to be in the moment, and it captures multiple sources I draw strength from: the unconditional love from my family; the pure affection and trust from animals; books; plants and sunlight; and lying down on the ground, connecting to the Earth. I was happy in that shot, even though I look - and probably was - exhausted.
 

After the good scan results in December I thought that I would be able to relax a bit until the next scan (which is now only a month away), but so far the beginning of the year has been tough. As much as I like to focus on oneness with all beings, there are times when this is a very lonely road.

The unanimous advice from healthcare professionals was to prioritise self-care and to make the return to work as gentle as possible and keep stress at bay. Instead I have reverted to people-pleasing and spread myself too thin and put the (perceived) needs and expectations of others first, running around and becoming breathless and frazzled.

I have come to realise that I have been trying so hard to function at a time when I need to mind myself and process everything. Then there have been pains and other symptoms, lingering chemo brain and the fatigue hitting me after a long day, and I neglected my routines, so it is no wonder that I haven’t been coping well.

In the past, this time of the year involved working crazy hours preparing for a festival. This year I am overwhelmed by my inbox alone. A lot of tasks feel like wading through treacle.

One of the most enjoyable mornings recently was during a storm, when the electricity went and I sat at the table reading and writing by candlelight and attempted to heat water on the stove. It seemed like a clear sign to slow down.

So it is back to basics again. I have been talking to people who have been through similar and to therapists and mentors, and what emerged was the need to retreat and to come back into my body and give myself a break. One exercise that is often suggested for grief and trauma is to gently hit or tap your body with your palms or fingertips, and you can do it throughout the day.

For a more passive practice, I often just lie on the floor, either on my front, propping up my hips on toilet rolls in the absence of chiropractic wedges (homework given to me by one of my healers), or in a legs-up-the-wall pose. Both are very soothing for the nervous system. 

Going to work is easier on several levels when I wear thermals and have a flask with ginger in hot water, two simple grounding things my healer also recommended. She also advised me to use oil all over my body. I like to add in warming essential oils such as chamomile.

The books I am reading at the moment are a good mix, though mainly non-fiction, apart from William Trevor's short stories (usually I always have a novel on the go as well). I keep getting the right recommendations at the right time. Joel Goldsmith is a revelation. The Source is further evidence that neuroscience is finally catching up with what Eastern wisdom has known for a long time (though I feel conflicted about some aspects of the Law of Attraction, as they seem to ignore the large proportion of people who are not cushioned in privilege).
 

I am doing Oprah and Deepak’s current 21-day meditation course ‘Perfect Health' and started writing Morning Pages again (I bought Julia Cameron’s book years ago and did some of the exercises in The Artist’s Way for a while, but never kept them up. I am about to join a local course on it). After several nudges towards A Course in Miracles, I am now doing the workbook via Paul Babin's Youtube channel The Abundance, at my own pace. His deep, calming voice has accompanied me on and off over the last two years. He also has new meditations specifically for women with major health challenges.

John gave me a sustainable yoga mat from Eco Yoga as a present, and it is so much nicer to use than the PVC ones. I had a standard mat for nearly 15 years that my sister's cat once used as a scratching tree and am keeping it for when somebody joins me (my nephews!), and I was shocked to read that some studios dispose of mats after three months. This Jute one also has much better grip, and when you are face down on the mat you don't get that plastic smell that never seems to disappear from PVC.