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).

Routines for staying grounded

 

 In the studio

 

Some recent and current reading

 Spinach 

There are no weeds

Routines, be they daily, weekly or monthly, are an anchor in life, especially in these extraordinary times. We need structure. As a natural introvert I haven’t had trouble adapting to the lockdown, and while I share the global anxiety and heartbreak, just as I feel it about global warming, wars, human rights issues, poverty and other crises, and am worried about other people (and in awe of the frontline workers), I am used to dealing with massive uncertainty and am embracing the gifts and lessons in this situation, something I have had plenty of practice in since being diagnosed with cancer.

I am using this period as a retreat of sorts. Luckily I am still working part-time and only losing out on some of my income, and we are financially secure. Being at home has given me the space to expand the routines that have become such vital tools in my healing. It has been an emotional few weeks for various reasons, and some days I could barely do one or two of the things on this list, but I can feel the cumulative benefits from incorporating the below into my days and weeks as much as possible:

Exercise / gardening:

Two activities not everyone is able to do, and I never take them for granted. I dusted off the dumbbells I had bought in preparation for surgery and now rotate Christine Coen’s 22-minute workouts. She focuses on the mental health aspect of weight training and the workouts are varied enough to not feel overwhelming, though I still have to pause at times. I am also running more than ever, but I try not to be too rigid about it. One of my rounds involves stopping at the beach on the way home and wading through the water - we are very lucky to have so much space around us with access to beaches within the 2km radius our movements are currently restricted to. When I don’t feel like a run, I walk instead or spend an hour gardening. It has been sunny and dry lately and I am getting a lot of fresh air into my lungs and appreciating this heightened connection to nature.

Creativity:

Thanks in no small part to this wonderful course, I am in a state of Flow when it comes to painting and drawing. At the moment I am drawing and painting children a lot and working on my botanical illustrations and some personal projects. Last night John and I got our hands into clay, inspired by the Great British Pottery Throw Down (Keith Brymer Jones must be one of the most soulful people on the planet; he is regularly moved to tears by a piece, and those are moments of humanity that are a balm for the spirit!). Food preparation is a creative pursuit in itself and an exercise in mindfulness, and I am trying out recipes I had saved and making large bowls of rainbow salads, healthy desserts and cakes.

Meditation / visualisation / spiritual practice:

These days my practice usually involves one long Joe Dispenza meditation and/or two shorter ones each day. I also still listen to my custom hypnotherapy audio recordings a few times a week. Marisa Peer has been uploading a lot of free resources, including hypnotherapy sessions and visualisations. I read spiritual texts every day and listen to podcasts or Youtube videos, for example talks by Michael A. Singer (I bookmarked this one as I want to listen to it again).

Yoga / breathwork:

These are essentials for getting back into my body. Yoga with Kassandra has created a 30-day morning yoga challenge, so before I sit down to work I do one of those ten-minute sessions and later in the day one of her longer Yin Yoga classes. This one focuses specifically on the immune system.
Wim Hof (aka the Iceman) regularly shares free content, and I have been doing this short sequence of Wim Hof breathing.

Reading:

Reading is probably my number one activity right now; I have been reading so much, across different genres. A couple of standouts: Before lockdown I got Laura Cumming’s new book On Chapel Sands from the library and started reading it last week (as usual, I have several books on the go); I am savouring it at intervals, chapter by chapter, out in the garden. I finally bought Anne Lamott’s Bird by Bird. Instructions on Writing and Life, which I had been wanting to read for years, and, as expected, it is excellent, a book to visit again and again. Elizabeth Hardwick's semi-autobiographical novel-letter Sleepless Nights is also remarkable and certainly in a category of its own.

Writing / correspondence / connection:

I still write my Morning Pages every day and am also working on a journal/memoir (that I might never share publicly either) about the last two years, something I have been doing on and off.

Correspondence is important, too, and I have been making and sending cards, writing letters and putting together parcels, and reaching out to people I had been meaning to contact for a while. Snail mail also offers a balance to all the additional screen time now that so many meetings and appointments have moved online. In a lot of ways this pandemic has brought people closer together. I now talk to my 86-year old friend almost every second day (she lives alone and is cocooning); there are more video calls with family and friends; my ‘Irish’ nephew has playdates with his cousin in Germany via Whatsapp; people are reviving old friendships and forging new ones.

Therapy:
I have regular appointments with my therapists, counsellor, healers and mentors, and these are very much part of my routine. They are expensive (with the exception of the Cancer Care West counselling service; everything they do is free - we are very lucky to have them), but so worth it, and I am thankful that I am in a position to afford them.

Rest:
When I am feeling well, I want to make up for all the time I lost or wasted and go all in. Thanks to energy healing from this man the previously continuous fatigue lifted not soon after my treatment, but in my excitement over that I tend to forget that my body still lets me know very clearly when I have overdone it - which is of course true in general, but now comes with the added sensations of cancer-related fatigue. So while it is tempting to do all the things I've been meaning to do, I remind myself to slow down and take rest days as needed, with no pressure to be productive.

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On the note of productivity, I hope to be back here with possibly shorter but more regular posts - I have a lot of drafts, but haven't had the mental space to edit and post lately. 

 

Biophilia

Homemade bird food - attempt #1, and a book on bees

'Barnabee', oil on canvas board (the model was already dead!)

"The effects of nature’s qualities on health are not only spiritual and emotional but physical and neurological. I have no doubt that they reflect deep changes in the brain’s physiology, and perhaps even its structure."

 Oliver Sacks, quoted in this Brain Pickings post

"When humans come into contact with benign soil bacteria such as Mycobacterium vaccae, proteins from its cell wall trigger a further release of serotonin from a specific group of nerve cells in our brains. So it seems that a bit of weeding can be good for more than just your herbaceous borders."

Mitchell, Emma: The Wild Remedy. How Nature Mends Us, 

Michael O'Mara Books Limited, London 2019, pp.9f.

I have always found weeding therapeutic (although sometimes it can lead to ruminating), but it was interesting to read the scientific explanation in Emma Mitchell's wonderful book about the medicinal effect of nature on her depression. Through that contact with soil, together with inhalation of the volatile compounds and oils of plants (which produce some of the same effects on the systems of the human body as on plants - protection from viruses and bacteria), the endorphins from exercise, and the release of serotonin via sunlight on our skin and the eye's retina, a simple walk in a green space yields numerous benefits from nature's pharmacy.

There was an interesting article in The Irish Times recently about reconnecting with nature that specifically mentioned fractals, the visually complex patterns found in nature. I cannot find it online, but it quoted physicist  Richard Taylor, who explained that "Your visual system is in some way hardwired to understand fractals, and the stress reduction [of being in nature] is triggered by a physiological resonance when the fractal structure of the eye matches that of the fractal image being viewed." In some of Joe Dispenza's newer guided meditations, he uses fractals for tuning into the energy centres of the body, and I am keen to get back into those, though they seem too advanced for this lapsed meditator (I have only been doing very short meditations in the last few weeks).

I know I will always feel better after spending some time outside, but some days I don't heed that call and self-sabotage instead. So I am grateful for friends who get me out even on my worst fatigue days. This morning I was on the couch as my body was aching all over (the now familiar aftermath of going to see my oncologist for results - thankfully they were good! And yet, for the first few days the relief and gratitude are mixed with utter exhaustion), and just as I was tempted to binge-watch Grace and Frankie at 9:30 in the morning my neighbour asked me whether I wanted to join her for a walk. And of course it helped.

A few weeks ago we were dog-sitting, and even though I had a flu-like cold and there were almost continuous storms, I managed to take the dog for walks. They were exhilarating. I would slowly crawl up the hill to the bog road at the end of our cul-de-sac while the dog kept running ahead and looping back. There was a puddle that had turned into a pond and was effectively blocking access to the grassy bog road. But I was wearing wellies and waded through it, and each time I would stop in the middle, feeling the cold of the water around my feet and legs and looking at the abundance of lichen on a tree which seemed to glow in the dim grey daylight, and I would temporarily be lifted out of whatever thoughts were going around in my head and feel immensely grateful for another day.

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My nephew and I made posh bird food recently - it involved coconut oil and organic pumpkin seeds. I won't link to the recipe, as it wasn't really a success (it didn't hold together when I cut it). We might try the recipe from Emma Mitchell's book Making Winter next. The bird balls we usually put in the feeders all come in plastic packaging (though admittedly I haven't done much research around it. There must be other options - we did spot fancy ones sold individually in a shop in Oughterard, but they wouldn't be feasible for the amount the birds in our garden get through in a week!), so I figured making our own would be a good idea.

We had looked into getting bees, but right now it feels like a lot to take on, so for now we are focusing on making our garden as bee-friendly as possible. My sister gave John this beautiful illustrated book on bees. A while ago I brought a dead bumblebee back to life on canvas and we hung the painting at a child-friendly height in our sitting room.