I’m not an artist, but I wanted to be able to describe my pain through photography… Working with photography has been a way of somehow getting to the core of things.
I have metastatic breast cancer. I was first diagnosed nine years ago. Now, the cancer has reached my bones and lungs.
I’m wary of imagery that depicts me—so much so has my body become equated with new prognoses: localized, advanced, early-stage, late-stage, terminal, inoperable. That fear has become ingrained through needing regular scans.
I hate scans. I hate talking about them. I hate seeing them. It’s the most frightening process to go through—not the procedure itself, but the implications of it, the results.
But as part of the Pain Project, I allowed myself to be photographed by Marysa Dowling—naked and wrapped in a sheet.
The final product showed a set of images layered on top of one another, creating a depth that felt like looking into my very being. The effect was chillingly similar to the medical scans I’ve received over the years.
For me, this image represents that restlessness in your body that you get when you’re in pain, and you just want to crawl out of your skin. Studying it, I saw my body free from the fear of new prognosis—for one of the first times in years.
I live alone with a huge, vibrant garden that is my sanctuary, my source of connection, and my purpose.
I planted the fruit trees and made sure to leave a wildlife corridor running through its center. I use it to grow vegetables, to listen to the birds, and to study the pondlife.
I get outside most days—even the bad ones. It’s where I go when I need to escape from the rest of the world, from my own pain.
I love my fruit trees and the shade they give in the summer. I love all the spring anemones, violets, and primroses. Now it’s cowslip time. I love the hedges that the sparrows use for shelter and a spot to have a gossip, and the small creatures that steal all the hazelnuts and fruit.
I love my fruit trees and the shade they give in the summer. I love all the spring anemones, violets, and primroses. Now it’s cowslip time. I love the hedges that the sparrows use for shelter and a spot to have a gossip, and the small creatures that steal all the hazelnuts and fruit.
I love the fairy ring of grass I planted in the middle of the flowerbed. It’s a good spot to watch what’s going on in the pond.
I love the scent of roses, jasmine, honeysuckle, and lavender.
There’s nothing like picking strawberries and getting all sticky and red with their juice, or popping raspberries from the bushes, or grazing on small tomatoes tasting of sun and tomatoes.
All of this happens surrounded by birds, amphibians, and hedgehogs. I could go on.
It’s my deep connection to the natural world that has helped me find the language I need to describe my pain.
For most people, the sensation attached to a medical term is unknown—until it becomes their own diagnosis.
It’s very difficult to describe pain, especially while you’re in it. The nearest I can come up with is weird and wonderful similes, like bees trapped in a vent or ants crawling inside me.
The other type of pain I have is neurological, neuropathic pain. That feels like a band across my back and chest, just below my shoulder blades. That pain is like insects crawling along your nerves.
Pain has taken its toll on my relationships, particularly with my family.
I know that my pain affects my brother and the rest of my family in several ways. I think it’s hard for them to see it. I think it’s harder for them not to be able to see it and not be there, because they’re helpless.
If you’re coming to appointments, if you’re going into hospital wards to advocate for someone, you’re doing something. If you’re a long way away, you can do nothing—other than offer sympathy.
I use slow-release fentanyl patches and liquid oxycodone—two heavy opioids, particularly effective for managing the persistent and severe pain that comes with bone metastases and other cancer-related pain.
They also cause confusion, nausea, and drowsiness, among other common side effects. In my case, it’s the cognitive impairment that stops me from taking more than the minimum dose.
Sometimes the pain is unbearable—like a sharp, gnawing sensation, like bees trapped inside a small space. It made me a little bit mental—just constantly having that pain.
Pain makes you depressed. Long-term pain makes you more depressed. Acute pain can make you want to kill yourself, frankly.
Some of my pain is neuropathic, and eventually, it was the antidepressant duloxetine that brought me the relief I needed.
