Healing and Resilience
Name: Hilary B.
Type of Cancer: Spinal Ependymoma
Diagnosed: 2021
By: Hilary B.
— Categories:
Ongoing Pain
In mid-2021 I was suffering from lower back pain which was not uncommon for me. We were in the midst of lambing on our little farm in the Adelaide Hills, South Australia. My husband was out of action after falling from his horse and badly injuring his leg, so I was doing more heavy lifting than usual. As time went by, the pain got worse, and visits to the physio gave me no relief. I went to the general practitioner, who prescribed strong pain relief and organized a CT scan. The results of the CT scan showed the usual degeneration of “someone my age.”
My doctor organized an appointment with a spine specialist. This physician told me I was just “getting on” and booked me in for radiofrequency facet joint denervation. I didn’t get a good feeling from the physician as he didn’t examine me and asked very few questions about my situation. Thank goodness I didn’t go ahead with his suggested treatment.
In September 2021, it was my physiotherapist in the end that strongly suggested I get an MRI. At this point, I was virtually bedridden from the pain and had started to lose some feeling around my bladder, and my legs had become tingly and slightly numb.
Answers Finally Revealed
The MRI showed a 3-cm lesion entirely consistent with a myxopapillary ependymoma located at L1 & L2, displacing the cauda equina around the anterior and lateral margins of the mass. The results took me completely by surprise. I had “Google Doctored” my symptoms but had skipped anything to do with cancer as those cases were so rare. I remember telling my husband in disbelief that I had cancer— not the slipped disc we first suspected. A review of the original CT scan showed the tumor clearly present but subtle and very difficult to perceive.
I frantically began to scour the internet for information, and that’s when I discovered the fabulous CERN Foundation site. The stories of other people’s journeys were both inspirational and informative.
My general practitioner referred me to my awesome neurosurgeon, Professor Andrew Zacest. A few weeks later, on Oct. 19, 2022, I was in hospital to have the tumor surgically removed. In the surgical room, a huge team surrounded me and, after 6 hours, successfully removed the whole thing. When I woke up in recovery, I took a big breath in with no pain. It was such a relief not to have that awful debilitating pain anymore. I was still sore from the surgery, but it was nothing compared to the pain I had been in from the tumor. I spent 24 hours in intensive care and a further 6 days in the spinal ward. I was up and walking on day 1. On day 4, I suffered a spinal fluid leak which caused a terrible headache and nausea. This took about a week to recover from.
Support and Care Along the Way
The support from my family and friends was amazing. It really helped me to stay positive throughout a really challenging time. The whole experience was over really quickly, considering how sick I was, the risk of becoming paralyzed, the cancer spreading, or even dying. Happily, the amazing medical team removed all the cancer successfully, and scans three months later show no sign of its return. I feel like I speed-dated cancer!
It’s been four months since my surgery. I still have pain at the surgical site, and some numbness and tingling remains in my legs. I got off lightly compared to many of the
experiences I have read about. I feel very fortunate to be cancer-free, and I get stronger every day. I will have yearly MRIs and am expected to make a full recovery. I am slowly returning to work and should be back full-time by May this year. I should also be ready for this year’s lambing season in August!
Update: It's hard to believe that I'm now wrapping up my second lambing season post-surgery. The progress I've made fills me with immense gratitude and a renewed sense of strength. I do deal with occasional painful leg cramps and back soreness if I overdo it. I have a small area of numbness. These symptoms are reminders of the healing process and the incredible resilience of the human body. I will have annual MRIs until 2031. I am able to uphold my four-day work week while simultaneously overseeing our small sheep farm in the Adelaide Hills.
I express my heartfelt thanks to the CERN Foundation for providing me with invaluable and comprehensive information during a time when I struggled to find substantial resources about ependymomas. With the combination of medical science, personal determination, and the encouragement of those around me, I've discovered a newfound strength that I never knew I had.