Amy's Inspiring Interview: Conquering Cancer, Managing Life-Threatening Allergies, and Living with Functional Neurological Disorder (FND).

Authors Note: A Message of gratitude from Ellie, Creator and Author of A Note of Hope.

"I am deeply honoured to share Amy’s story today. She reached out to be part of this project after discovering our TikTok, and we had an in-depth conversation in April. During our hour-long chat, I was moved by her determination not just to survive but to truly thrive, finding purpose and joy despite the immense challenges her health imposes. Her positive attitude was so infectious that it was only when I began writing her story that I fully grasped the magnitude of what she has endured at such a young age. Writing this article has been an emotional journey, and I hope it faithfully captures the resilience, strength, and courage that define Amy as she navigates life after cancer whilst living with multiple chronic illnesses, including Functional Neurological Disorder (FND)."

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A Note of Hope Inspiring Interviewee Amy (24, UK)

"I went to University in West London to study Culinary Arts, and everything was perfectly fine—no health issues, no allergies, nothing. But in 2019, things changed suddenly."

Pursuing her passion for Culinary Arts at West London University, Amy had every reason to believe her life was on track. But in 2019, her life took a shocking and sudden turn as what started as a mysterious onset of food allergies spiralled into a complex and exhausting battle with multiple chronic health conditions.

Almost overnight, 19-year-old Amy, who had never experienced any significant health issues, suddenly developed five severe food allergies. One day she was enjoying her favourite pizza, and the next, she was fighting for her life after a seemingly harmless bite of pita bread sent her into anaphylactic shock. The shift was as abrupt as it was frightening, leaving her to navigate a new reality filled with constant vigilance and uncertainty.

"I had never had any allergies before," Amy recalls. "Then, out of nowhere, I couldn't eat wheat, barley, dairy, soy, or nuts. It was overwhelming."

Each allergy presented its own challenges, but the soy allergy proved especially difficult to manage. "The soy allergy was particularly hard because so many gluten-free and vegan options are made with soy," she explains. This made finding safe food options a daily struggle, forcing her to overhaul her entire diet overnight.

Anaphylaxis, the life-threatening reaction that Amy experienced, became her new and dangerous reality. What started as a subtle itch in her throat quickly escalated into something far more sinister. Her throat would tighten, her body would swell, and within moments, her airway would begin to close—a race against time that sent her rushing to the hospital.

"It was terrifying," she says. "It all happened so fast. One moment, my throat was itchy, and the next, I could barely breathe. It felt like my body was betraying me."

As if managing life-threatening food allergies wasn't enough, Amy soon faced another rare and debilitating diagnosis: aquagenic pruritus, an allergy to water. The condition, so rare that many doctors had never encountered it, made even the simple act of showering unbearable.

"The first time it happened, I got out of the shower, and my skin felt like it was on fire," she describes.

Her skin would flush red and become intensely itchy, with every drop of water seeming to worsen the pain. Even sweating could trigger a reaction, adding another layer of complexity to her daily life.

After months of confusion and suffering, a dermatologist finally diagnosed her condition. Though the diagnosis was a shock, it was also a relief to finally have an answer. With a treatment plan in place, including high doses of antihistamines, Amy has been able to stabilise her condition. She can now shower and even swim without the searing pain she once endured, though it requires constant medication to keep the symptoms at bay.

Amy was diagnosed with cancer when she was only 19-years-old.

"I had cancer in my pelvis, and it was discovered almost by accident. I was in the hospital because of severe constipation; I hadn't gone to the bathroom in about four weeks. They decided to do a CT scan of my stomach to see what was going on. During the scan, they unexpectedly found a large mass, about 10 centimetres, in my pelvis."

Amid managing her sudden and debilitating allergies, Amy found herself grappling with a cascade of other serious health issues. Gastric problems began to dominate her life—her colon became paralysed, leaving her unable to pass food through her digestive tract. She was diagnosed with dumping syndrome, a condition that caused food to move too quickly from her stomach to her small intestine, leading to severe nausea and cramping. Chronic acid reflux added yet another layer of discomfort, causing relentless burning sensations in her chest and throat. These symptoms became constant companions, each day a balancing act of pain and uncertainty.

In 2020, during a hospital visit for what had become an all-too-familiar scenario—a month-long bout of severe constipation—doctors decided to conduct a CT scan. Amy hadn't been able to have a bowel movement for four weeks, and the doctors wanted to see what might be causing the blockage. Instead, they found a large, unexpected mass in her pelvis, measuring roughly 10 centimetres. In what felt like a cruel twist of fate, Amy was thrust into another frightening battle after already enduring so much.

Amy was told she had a 10cm growth on her Pelvis.

Amy describes how her medical team initially downplayed the discovery, referring to it simply as a "growth" and assuring her that it was nothing to worry about. But when they called her with the results, their tone was shockingly casual for such devastating news.

"They called me at a train station to tell me I had cancer," Amy recalled. "It was as if they were telling me I had a common cold, not a life-altering diagnosis."

Stunned by their dismissive approach, Amy was left grappling with the reality of the situation on her own. At only 20 years old, she was thrust into the world of sarcoma—a rare and aggressive form of cancer. Although the initial tone of her medical team had downplayed the seriousness of her condition, the reality was far more frightening. Sarcomas are cancers that develop in the bones or soft tissues, and they can be highly unpredictable and difficult to treat. For Amy, the battle began with surgery to remove the tumour, an operation that, while successful, came with devastating complications.

"During the surgery, a nerve was cut, and now my bladder doesn't function properly. I was fine initially, but about two years ago, I started experiencing severe kidney pain. The doctors thought it was just a kidney infection, but two days later, I went into urinary retention and had to wear a catheter for six months to give my bladder a chance to rest."

In the wake of the surgery, Amy found herself facing a whole new set of challenges. Nerve damage sustained during the procedure left her with chronic bladder dysfunction—her bladder had lost sensation and control, requiring her to self-catheterise daily. The nerve damage also caused severe numbness that ran from her lower back down to her left buttock. "I can't feel anything in that area, not even needles," Amy said, explaining the ongoing struggle to manage the consequences of the surgery. The numbness in her lower body has persisted for years, and recurrent infections have complicated her situation further, with antibiotic-resistant bacteria requiring specialised treatment.

Amy has bladder damage and often has to self-catheterise.

Despite the severity of these complications, Amy's fight didn't end with the physical consequences of the surgery. She found herself in a constant struggle for validation from the very medical professionals who were supposed to help her. "It was an uphill battle," she said. "Even after they proved my bladder wasn't functioning properly, some of the doctors still dismissed my concerns."

"Right now, the doctors believe I have Functional Neurological Disorder (FND), likely triggered by the trauma from my cancer surgery."

Just as Amy began to adjust to the aftermath of her cancer battle, she was confronted with yet another devastating diagnosis: Functional Neurological Disorder (FND). This condition, which affects the functioning of the nervous system, brought a new and terrifying set of challenges into her life. In Amy's case, the FND manifested as sudden seizures and temporary paralysis, believed to have been triggered, at least in part, by the trauma of her cancer surgery. What was supposed to be a routine swallowing test—meant to explore her difficulty in eating—turned into a nightmare that left her paralysed from the waist down.

"It started out as a simple day procedure," Amy recalled, "but by the end of it, I had experienced the worst seizure of my life."

During that seizure, her body betrayed her in a way she could have never anticipated. "When I came out of it, I couldn't move my legs at all," she said. "It was a terrifying experience because I was so worried that the paralysis might be permanent. I couldn't lift myself up or even take a sip of water without help. I felt completely helpless."

That night in the hospital, Amy's partner remained by her side, providing emotional and physical support as they both faced the uncertainty of what would come next. "My partner stayed up with me all night, shaking my legs, trying to help me regain some movement," Amy said. By morning, she began to feel some sensation return to one of her legs, but her body still felt weak and unresponsive. The fear that the paralysis could strike again loomed over them.

Although Amy regained partial mobility, the episode left her shaken, and the uncertainty surrounding her condition continues to weigh heavily on her mind. Doctors believe her seizures are non-epileptic, linked more to the psychological trauma and stress from her past surgeries than to any direct neurological damage. Yet, the exact cause remains elusive, leaving Amy in a frustrating limbo, waiting for answers and trying to navigate her new reality.

Doctors believe Amy has FND due to trauma. For Amy, she suffers with seizures.

The unpredictability of her FND means that Amy's life is filled with unknowns. At any moment, another seizure could strike, potentially leaving her paralysed again. "I'm still waiting on final test results to rule out any other conditions, but right now, the doctors are convinced it's the trauma from the cancer surgery," she explained. For now, she tries to manage her symptoms while bracing herself for the unpredictable nature of her illness.

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To find out more about Functional Neurological Disorder, click the link below:

Functional Neurological Disorder (FND)

A neurological condition in which there is a problem with the functioning of the nervous system, but not with its structure. This can result in a variety of symptoms, including tremors, pain, and mobility issues, such as difficulty using certain limbs. FND often mimics other neurological disorders, making it difficult to diagnose.

Click Here

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Poppy deals with multiple chronic health conditions.

"The hardest part is accepting that this is my reality. I've had to let go of so many dreams—travelling the world, living spontaneously, and doing the things a typical 23-year-old would do. Instead, my life revolves around managing my health."

Amy's biggest challenge in living with chronic health conditions has been coming to terms with the harsh reality that her dreams and her body often work against each other.For Amy, it's not just the grand adventures that feel out of reach—it's the simplest of experiences. Things that others take for granted, like travelling or even going on a spontaneous day out, are monumental challenges for her. "Travelling is something I've had to let go of," she explains. "I can't even imagine being away for two months, let alone somewhere far from the healthcare I rely on. The thought of not being near a hospital that knows my medical history is terrifying."

Amy's health conditions are so complex and unique that her local hospital has become almost a second home, a place where the staff understand her medical history intimately. Her rare and overlapping conditions make it impossible to feel safe in unfamiliar places. This vulnerability was brought into sharp focus when a trip to the Lake District resulted in a hospital visit after a seemingly minor fall. "I ended up in a local hospital after tripping over a rock, and it was a stark reminder of how vulnerable I am," she says. "They didn't have my records, and I didn't even know where to begin explaining my situation."

Accepting that this is her reality has been one of the hardest parts of Amy's journey. At 23, a time when most people are just beginning to spread their wings and explore the world, she's had to come to terms with the fact that she might never be able to live that life. "I've had to let go of so many dreams—travelling the world, living spontaneously, and doing the things a typical 23-year-old would do," Amy reflects. "Instead, my life revolves around managing my health. Every decision I make, and every plan I consider has to account for my condition. It's frustrating, heartbreaking, and isolating."

Amy has endured many challenges with her health.

It's a daily struggle to reconcile her situation with the life she had once dreamed of. However, through this struggle, Amy is learning resilience. She's finding ways to celebrate small victories and carve out new dreams that fit within her health's parameters.

"Connecting with other cancer patients online has been both a source of comfort and a profound emotional challenge for me."

As Amy reflects on the last five years, she feels immense gratitude for her family, who have been her unwavering support system throughout her journey. They’ve stood by her side through every doctor’s appointment, hospital stay, and challenging moment. Her parents, twin sister, and amazing partner have gone above and beyond, always ready to drop everything to be there for her, whether it was to offer comfort during tough times or to celebrate small victories together.

Amy has also found comfort and connection online through relationships with other cancer patients. These connections have provided a profound sense of understanding and camaraderie—something she couldn't always find with her family or friends, as supportive as they were.

Amy has formed strong connections with people like Lia Smith, a young woman who had the same bone cancer diagnosis. Lia's journey was similar to Amy's in many ways, but sadly, Lia passed away at just 22. "She was younger than I am now," Amy reflects, "It's heartbreaking because, in a way, we shared the same journey."

Another dear friend was Hattie, whom Amy met online after Hattie was diagnosed with breast cancer the same day Amy received her bone cancer diagnosis. Though their treatments took place miles apart, their conversations created a bond that transcended distance. They shared fears, struggles, and moments of hope. But when Hattie passed away, Amy felt the weight of that loss deeply.

 "Losing her was like losing a part of my own strength," Amy confesses. "She was someone who truly understood the fears I had. We could say things to each other that no one else could fully grasp, like, 'I can't believe I have cancer,' and we just got it. No need for explanations."

The deaths of Lia and Hattie stirred Amy's own fears about her future, even as she remains in remission. "Every time I hear about someone passing away, it brings up that fear again," she says. "Even being in remission doesn't always bring peace because cancer can always come back." The battle against these emotions is one Amy fights daily, balancing her own mortality against the joy she feels for the connections she made along the way.

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Amy finds joy in creative outlets, especially painting!

"I love sharing my journey, especially because I've found a creative outlet that helps me manage my health challenges while also bringing joy to others. I started my own business, creating personalised wedding signs, which has been such a fulfilling experience."

But there's another side to Amy's journey—one that brings her a different kind of joy, rooted in creativity and a newfound purpose. After her diagnosis, Amy discovered that painting helped reduce her seizures, becoming a form of therapy. This therapeutic hobby became a flourishing small business when her sister suggested she start selling her work. "I started creating personalised wedding signs, and it became such a fulfilling experience," Amy shares. "I didn't expect it to grow as quickly as it did, but my signs sold out within 24 hours!"

This venture became more than just a business for Amy—it was a lifeline. "The work is calming for me," she explains. "Even when I was dealing with severe stomach issues and ended up in the hospital, this business gave me something positive to focus on." The process of painting flowers and other designs not only prevents her seizures but also lifts her spirits, allowing her to contribute to something beautiful in the lives of others.

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@mop_a_tops

Click to go to Amy's Small Business 'Mop A Tops'

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The success of her business was so overwhelming that Amy had to hire help, including a close friend from university who assists with the administrative side. Customers have been understanding when delays occur due to her health, which has made the experience even more rewarding. "They're just happy to get their signs in time for their weddings," Amy says. "It feels amazing to be part of someone's special day, even in a small way."

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"Despite all the challenges I've faced, I've accomplished a lot that I'm really proud of. I completed my degree in Culinary Arts with a first and finished my master's in nutrition part-time. My degrees mean so much to me because they represent my determination not to let fear or illness define me."

Despite her challenges, Amy graduated from university with top honours!

Furthermore, Amy considers one of her biggest achievements to be her academic success. Amidst hospital stays, cancer treatments, and a barrage of health issues—including frequent bladder infections and seizures—Amy not only completed her undergraduate degree in Culinary Arts but did so with top honours. On top of that, she earned a master's in nutrition, studying part-time while battling her body's unpredictable illnesses. "My degrees mean so much to me because they represent my determination not to let fear or illness define me," she reflects. These academic achievements symbolise Amy's refusal to give up, even when life felt overwhelming.

At the height of her struggles with cancer and her other health complications, it would have been easy to surrender to fear and let illness dictate her path. But Amy was determined to push through, even during the darkest moments. "I'm proud of myself for pushing through, even when things were at their toughest," she says, acknowledging the strength it took to finish her education in the face of adversity.

Now, Amy's sights are set on a new goal: becoming a gastro dietitian. Inspired by her allergist, Leanne, whose kindness and thorough care made a significant difference during a challenging time, Amy hopes to provide the same support to others navigating dietary restrictions and gastrointestinal issues. "It was a big life change to go from having no dietary restrictions to suddenly dealing with so many," Amy explains. "Leanne helped me through that, and I want to offer that same care to others."

However, her journey to becoming a dietitian is currently on hold due to her ongoing battle with Functional Neurological Disorder (FND). Often, the seizures caused by her FND cause memory lapses, erasing everything she had just learned and leaving her frustrated. "It's as if my memory resets to the morning of the seizure," she says. "That makes it incredibly difficult to retain any new information, and it's frustrating because I'm so passionate about continuing my education."

“I could have easily given up. But instead, I refused to let fear take over. I'm proud of myself for pushing through, even when things were at their toughest."

Overall, despite the immense physical and emotional challenges she has faced over the last five years, Amy continues to find ways to live purposefully. Her experience has been marked by fear and frustration, but also an unyielding determination to adapt and move forward. In sharing her story, she hopes to raise awareness about the realities of living with chronic illnesses—reminding us all that behind every diagnosis is a person fighting to reclaim their life, one day at a time.

Thank you Amy for sharing your inspiring story for the 'A Note of Hope' project.