Walking, swimming and Sufjan Stevens

"Going barefoot in nature immediately helps clear your energy. Stepping out onto the sand, putting your feet into the ocean, hugging a tree, all of these clear your energy. Nature is an incredible neutraliser of energy." Anita Moorjani

A lot of my routines have fallen by the wayside. The fatigue has been acting up quite a lot lately and I am technically on holidays, so I took a break from my normal day-to-day, including elements of my healing-from-cancer regime. I am aware that I put a lot of pressure on myself to do all the right things, and that pressure equals stress, which is what 'all the right things' are supposed to ease... I am still trying to find a rhythm that allows me to trust the process and not beat myself up when I fall short of my often unfeasible expectations. 

Exercise is an antidote to fatigue, though I have a tendency to overdo it and then pay for it the following day(s). And sometimes only proper rest will help. But while I haven't touched the dumbbells and haven't done any running for a few weeks, gentle exercise such as walking and swimming has been a salve.

Stripey symphony: My sister and nephews in the Burren - hats made by my sister

 

 

John and I went away for a few days (within Ireland) and did a lot of hiking - since the lockdown walking has become a huge part of our life. In recent weeks I have walked around islands (Cape Clear and Omey Island, Inis Oírr - we cycled around the latter), in forests, on beaches, Greenways, the karst landscape of the Burren, on the loops near our house, 5km along the rocky shoreline to a pub and returning via the coast road. We have walked together (often in silence) and each on our own, with family and friends, with dogs, and with strangers: I took part in a forestbathing session with a lovely group and two wonderful guides and hugged a lot of trees on my personal forestbathing forays.

The old runners I have been wearing in lieu of hiking boots are now falling apart, and on the recommendation of a friend I am tempted to buy a pair of recycled barefoot boots. Feeling the texture of the ground is like a foot massage (I also regularly walk barefoot in the garden or on the beach to ground myself) and the balancing act of walking on a rocky shore or any other uneven surface makes you use different muscles in your legs.

 

I still go swimming in the sea at least twice a week, and it was a joy to explore other beaches and find hidden swimming spots. We took my nephew to Inis Oírr and swam in clear turquoise water. On Cape Clear I waded into the water among rocks covered in shells and emerged with bleeding scrapes all over my legs, from what had felt like lightly brushing against the stones as I floated. I loved even that. Being in cold water makes me feel so alive. 

 

 On the ferry to Inis Oírr

 

I spent the Irish heatwave of 2018 indoors suffering the side effects of aggressive chemotherapy and radiotherapy and unable to handle the hot weather. Last year I stayed covered up (the advice was to do so for a year following radiotherapy) and didn't swim until September. This year I have been exposing the surgery scar on my back and my radiotherapy tattoos with abandon (and SPF 50). Sometimes those souvenirs catch me by surprise when I see them or when my hand touches the scar in the shower - it all still feels unreal - and I marvel at what my body has been able to do since I finished treatment.

 

The soundtrack to these last few months has been at least 50% Sufjan Stevens, an all-time favourite. One of the songs I have been playing on repeat for the past couple of years ("Casimir Pulaski Day") is about remembrance and cancer and I connect with it on so many levels. This concert from 2006 is one I keep returning to. I almost feel I am in the audience when I watch this, and something about the overall aesthetic and the atmosphere - the wings, the uniforms, the group dynamic on stage, and of course the music - gets me every time ("Casimir Pulaski Day" starts at the 6-minute mark).

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.