On resilience

 I read something like this on the internet the other day: "If you're congratulated on being resilient, maybe you needed to be held and cared for." I pondered that. I recognize that being resilient sometimes has been an act of defiance, of surviving by partly shutting down to not feel so much and by doing that be able to continue, to be upright, to tolerate the intolerable. And at times I recognize also that had I had more support and care, I could have softened. But sometimes the tough resilience is necessary. 

I'm lying on my back in my flat in the small seaside town where I live, looking out the skylight at clouds rolling by. Thick, layered cumulus clouds, sometimes parting, giving way to slivers of deep blue sky. Streaks of sun lighting up the clouds. Everything reminds me of impermanence. I think a lot about death. Or, it's wrong to say, that I think about death, but it's ever present, like a deep undercurrent and I like that. I don't want to forget death. 

I'm lying very still, letting my bones and my flesh settle. Allowing my body to sink with every breath, soft and slow. I'm slowly landing. Slowly coming home. It's Sunday and tomorrow I'm going back for the last days of treatment.

I only have three days left of treatment and the days of not counting down are over. I started counting down exactly 12 days ago. Counting down meticulously. Three days, six courses of radiation and chemo. One bloodtest and one consultation with the oncologist. 

The black pen marks from the Particle are long gone. The marks I took such care to touch up during the weekends were a fading reminder the first few days of an environment and a treatment that held me with warmth and care and invited a soft and open hearted resilience. A conversation between body and environment. Treatment a delicate balance between breaking down tissue and healing. 

But ... the particle accelerator broke down. The short story is that a technician screwed up during maintenance and caused damage to a crucial part of the accelerator. They needed a spare part and it would take at least two weeks to get the accelerator up and running again. They called me on the evening of Sunday the 1st of May to tell me that there would be no treatment on the Monday. At that time they just said, they had trouble with the accelerator and that my oncologist would call me Monday to tell me what was going to happen and what the treatment plan would be. I thought: a welcome break, a pause, before treatment would resume, a delay, annoying because it would affect my plans afterwards, but I didn't suspect the scale of the break down. 

So when my oncologist called the next day and said, that there would be no more treatment for me at the Particle, and I would be transferred to another hospital to receive traditional radiation treament, I felt completely numb. In shock. This was the treatment they'd said would be too dangerous to receive again, They had satd that radiation to my healthy tissues with traditional radiation (because I had received radiation before) would exceed safe levels and there would be a much higher risk of serious long term side effects.

Now I had no choice. Proton therapy had been my beautiful treatment. Safe. Kind. Easy on my body. Now I had to surrender my body to an experiment and no one knew how it would affect my healthy tissues in the long run. I hated the thought of it.It scared me.

We didn't go through other options then (we did have conversations later going through why this was my best ... or even only option), I couldn't think straight and just agreed to what she said and even offered her my sympathy for her situation. 

Afterwards I broke down crying. I was in a state of total disbelief. Waves of fear as I remembered the nightmare of the first round of radiation in 2019, this was my only frame of reference. I had gone to the beach and lay there for a long time crying. And not a quiet neat cry, I was bawling. This couldn't be happening. It felt like a parallel and surreal reality. Again this weird parallel life unfolding. But shortly after they called from the hospital in Vejle and already the next day I travelled down to talk to the oncologist there and to go through a new mr-scan they would use to plan the remainder of my treatment.

Vejle is not a horrible hospital. But compared to The Particle it was ugly and attacked my senses... and I compared. I grieved over my loss as I sat in the small cramped waiting room, chairs lined up against walls, tv on, inescapable. Tears welled up and I had to go wash my face before meeting the oncologist, not wanting to reveal my vulnerability to a doctor I didn't know. I braced myself for the meeting. I felt vulnerable and fierce. No nonsense fierce. (One of the nurses looked like she was afraid of me, and I think she sensed my vulnerability and that it scared her. What if I broke down and cried? Normally I'm the good patient in that I don't show much unwanted emotion and in hospitals most emotions are unwanted. There's no time for them.) At the Particle I felt touched on a daily basis. I could cry. My tears were allowed. 

The oncologist turned out to be a gem. Warm, kind, open, generous with his attention. That day he saved me and made the prospect of the move to Vejle seem okay. I was still worried, but I felt there was some hope this wasn't as terrible as I had feared. I could feel a part of me softening.

 (By the way I’ve had the same doctor following me at the Particle and at Vejle. This also makes a world of difference for my feeling of being held. Going through surgery I had no contact doctor and that felt so disconnected. No one knew me and my story. I have friends who’ve been through cancer treatment and who have met different doctors every single time, which feels unsafe and not held. That would be the easiest thing to change, I think?) 

I returned to Aarhus to pack up my stuff, was picked up by a patient transport and driven home to sleep one night at home and then was picked up and started treatment in Vejle the next morning. 

10 days, 20 courses of radiation and chemo. Countdown. Only three days left now. I'm still tolerating the treatment well, although I feel more tired and more nauseated than before.

 I've gotten used to Vejle, but am reminded daily of what made the Particle a special and nourishing, even healing,environment. How the softness and care and respect held me and invited a softer kind of resilience I don't have access to in Vejle. There is no space, no sense of being held in Vejle. I am treated in the same accelerator every day, but the staff is always changing and I don't know a single name of any of the nurses or radiologists. They are kind, but there's little time and it has a conveyor belt feeling. I'm staying at the patient hotel, more patient than hotel. The resilience I have access to is tougher and less in contact with my senses. I feel myself contract and shut down slightly. Time feels stretched out. Hospitals are for sick people and I don’t feel sick. Everything at a hospital addresses what is sick in me, not what is healthy. Yet I’ve adapted. I’ve had to. 

I’m okay, there are pockets of joy, moments of humour and gratitude, but mostly now I wait for this to be over and long for life outside the hospital. Three days and then this will also fade and become a memory. Impermanence. Also this will pass.