Name: Katie
Neuroendocrine Cancer Site: Pancreas
Neuroendocrine Cancer Hospital: Hammersmith Hospital, part of Imperial NHS Foundation Trust London
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Katie’s Story
I was a ballet dancer before I first became ill. My life was class, rehearsals, performance, on repeat. One day, in my early twenties, I woke up and I could not feel my legs. My diagnosis came via a process of elimination. No cancer. No stroke. No, MS. I had ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome. “A difficult illness,” my then GP told me. “But better than so many others.” She placed her eyes on my feet, which could no longer dance. They too had become difficult.
The male specialist she referred me to deemed me too quiet. He wanted me to become a social butterfly and take repeated trips to the local cinema. This, he insisted, was the only way forward. At that time, I was too young, too emotionally unequipped to respond to such clumsy advice. Over the years, I have occasionally wondered just what genre of film I might have watched that would have cured me of my relentless fatigue.
I lived that first illness alone. It stole my career, but not my creativity. Lying in my bed, I tried to compose ballets and stories. I held dance steps and characters in my mind. I cared for them in a way that I was not cared for. Like many people with chronic illness, I felt I had become invisible.
My second illness came about 15 years later. I knew in my bones that it was something other than ME. Something more. My symptoms presented as nebulous, non-specific. I had more exhaustion, more food sensitivities, and more pain. At this time, I had an excellent female GP who listened and initially sent me for food allergy testing. I was diagnosed with Birch Oral Allergy Syndrome and Asthma. Illness upon illness; the weight of it. But there was more. I felt it. So, my GP referred me to a gastroenterologist who ordered an endoscopy, and that is when they found a mass on my pancreas, and I was informed that I had neuroendocrine cancer.
Much of that time is a blur. It is filled with phrases, fragments, music. I had surgery, a distal pancreatectomy to remove part of my pancreas and my spleen. “A Mercedes-Benz incision. Classy car,” the surgeon said. He smiled, and he was kind, but all I saw in that incision was not a car, but curves, like a dancer’s body in arabesque. “You are young to get this illness.” I have always felt like an old soul. “It’s the best kind of cancer to get.” This comment always arrives with its own aftertaste. What does it really mean? I had liver ablation surgery because the cancer had travelled to my liver. I travelled to a musical space. I played the music of the first act of the ballet, Giselle, in my head because it was a language I understood. I had major liver surgery. I vividly remember two female nurses who looked after me on the ward. One wanted to start her own soya milk company, and the other composed poems about the Indian Ocean. I considered whether I might ever be well enough to visit the Indian Ocean.
I was invited to a support group for my cancer. This was a beautiful and challenging time. There was support for this uncommon form of cancer, but no support for my ME? I came to understand something then about the hierarchical structure of illness, and I did not like it. I saw how I had absorbed into my body some of the contentious language that is so often levelled at people with ME. Lazy. Directionless. Melancholic.
Those early hospital days had a masculine energy. In gastroenterology, surgery, and even the Imaging Department, I encountered many male consultants, specialists, and radiographers who were cerebral and analytical.
As a collective, they often reminded me of that very first consultant who had proffered cinema attendance as a cure for my ME. I felt small and scared; my body felt taut. I needed to find a way to soften those spaces. So, I brought classical music into the Imaging Department. I played Rachmaninov inside my head to counter the knock-knock cacophony of the MRI scanner. It made me feel a little more grounded, more myself. And then I brought women inside the hospital. I resurrected my great-grandmothers. (I have never met them in person. I have only seen pictures of them). I marched through the hospital doors, as much as a person can march with a walking stick, with my invisible entourage of historic women. I made sure to give each of them time to comment on the astonishing advancement of Western medicine. Yes, this is a unique way of conquering a fear and softening a space, but to this day, it brings me joy, and that is what matters.
I started monthly Lanreotide injections, and soon after that, the targeted mTOR blocker, Everolimus. I did well on Everolimus; we grew to have a good working relationship. A diagnosis of Type 3C diabetes because of the initial tumour, and the treatments of Lanreotide and Everolimus, hit me hard. I bartered with God. I wanted so badly to give one of my illnesses back. With monthly Lanreotide injections and daily Insulin injections, there were suddenly too many needles. Things felt pointed.
After 6 years on Everolimus, I had to stop taking it. My blood pressure was dangerously high; my blood glucose management was poor, and a few of my tumours were growing again. So, I started PRRT, which I found quite challenging. I was nauseous and exhausted, struggling to keep hold of my body. I had lucid dreams where I found myself flying across huge bodies of crystalline water.
Post PRRT, I am stable disease. However, in myself, I am much changed. My hospital letters remind me that I am an optimistic, quietly articulate woman. I took the quietly articulate part and made a book of it. The Quiet Act of Loving Bones, my first novel, published by Joan Publishing in 2024.
The good relationship I had with Everolimus had allowed me to go to university as a mature student and complete an MA and MFA in Creative Writing. Language is important to me. Personally, I do not like to be spoken of as a cancer warrior or fighter. Fighting places my body in a position of tension. It demands that it is permanently primed. I want my sick body to inhabit a sympathetic space, at least some of the time.
I am more than the sum of my illnesses; more than the language used to define them. Cancer is not just cruel or heartless. Cancer is. I am. For every good day, there will be three or four bad days. I am not keen on the mathematics of that. I am still learning to navigate the space that exists between an elite dancing body and a sick body. I occasionally encounter cerebral specialists. Over the years, I have learned to respond to their questions from a position of creativity and ease. This is what I feel, I say. This is what my body feels. I leave it there. It is more than enough.
Katie
Written July 2025