Chapter 1
The First Signs of FND & NEAD
A&E
It started as bone and muscle pain from Docetaxel - normal for chemo, I was told. But when paracetamol, ibuprofen, and strong co-codamol didn’t cut it, I ended up in A&E. By Saturday night, I was on morphine, admitted to hospital, and still barely finding relief. Eventually, they moved me onto opioids- long and short release. Even then, it only took the edge off. I was exhausted, in pain, and the only escape came from sleep.
I was stuck in a side room off A&E during the May Bank Holiday weekend. It took my husband, sister, and mum showing up at 2am to advocate and push for me to be admitted. The hospital was understaffed and everyone was waiting for someone else to make a decision. Eventually, they found me a bed - on an orthopaedic ward, the only one with a morphine machine and side room. I was just grateful to be somewhere.
Ward & Family Life
I spent days on that ward, in isolation due to low immunity from chemo. But I was never alone. My family dropped everything. A rotation of two of them stayed every night - on a foldout bed or mattress on the floor. My sister travelled from Skipton. My parents came from the Lake District. My auntie and uncle, visiting from Canada, stayed too. They stepped in so my husband could be home with the kids during the nights. My family became my advocates when staff weren’t listening. My sister dubbed them the “Bad Ass Bitches.” And they were.
My in-laws came from Devon to take over when others had to return home. My husband’s mum even took a turn on the floor. Somehow, in the midst of fear and exhaustion, we found moments of laughter. One nurse and I constantly told each other jokes. Strong medication made me more outspoken - apparently quite funny. The staff were brilliant, thankful even, to have family with me. We left an impression.
Where Was The Pain Coming From?
The team connected me to a self-administering morphine machine. I could press for pain relief every five minutes. They tracked the clicks to find a pattern. I finally felt like I was in the right place, with staff who were listening.
Shaking
Then came the shaking. Violent, full-body tremors while I was awake. My first episode happened in A&E, terrifying everyone - myself included. On the ward, I had more. They sent me for MRIs of my brain, hips, and spine to check for cancer spread. Everything came back clear.
Some episodes lasted two hours. One night, my auntie pressed the emergency buzzer. Doctors surrounded me. A breathing exercise helped: visualising a box, each side guiding my breath. “An Amazon box with tinsel on it,” my sister said. That mental image helped my autistic mind slow the episode.
Doctors diagnosed them as non-epileptic seizures - or NEAD. My body’s way of reacting to overwhelming pain. Morphine wasn’t helping. My oncologist recommended Gabapentin for nerve pain. It worked.
Home Time?
Eventually, the pain came under control. IV (drip) medications switched to tablets - a sign I could soon go home. I’d learned how to manage the seizures through singing and breathing. Physio and Occupational Therapy visited. I’d been in bed for two weeks and needed help building strength. They gave me a walking frame, shower stool, and crutch.
The first time I got wheeled outside into the sun - it was heaven. I sat in the hospital garden with my family, eating ice cream, feeling human again.
Ward T7 had become home. The staff, the care, the endless specialists, my family beside me night and day - it was humbling. I felt deeply loved.
Back In A&E
But just days after my next chemo treatment and I was back. The pain returned. I should have left hospital with an ongoing prescription for Gabapentin - not just a few days’ supply. My pain flared, I got a chest infection, and I was back in A&E with a temperature of 38.5°C. My sister rushed to sleep on the floor overnight again.
Thankfully, within 24 hours, a clear pain management plan was in place. I had the meds I needed. We had protocols for what to do if it failed again. I had my notes from the previous stay, and that helped massively.
This wasn’t just my journey. It was ours - mine, and everyone around me.