Fiona Carey: Please don’t call me a ‘warrior’ or a ‘survivor’

Please don’t call me a ‘warrior’ or a ‘survivor’

When people ask me to share my story, I’m usually happy to do so. What I don’t like, though, is being portrayed as ’inspiring’. I also dislike the terminology often used around cancer – words like “battling” or “overcoming.” To me, it feels patronising and misses the point entirely. And it does rather suggest that if, ultimately, you lose that ‘battle’, it’s because you haven’t tried hard enough, or haven’t been sufficiently ‘positive’. And it isn’t because you haven’t tried hard enough; it’s because you’ve been unlucky.

The beginning of it all
In the summer of 2001, I developed a persistent cough and lost weight, something that a colleague of mine first spotted before I had even realised. After several visits to my, a physical examination revealed a large lump on my side, which led to further tests. A scan revealed a 10 cm tumour pressing on my kidney and diaphragm. It was surprising, as I hadn’t had typical symptoms like blood in my urine or kidney pain, just the cough and mild weight loss.

The waiting game
The referral process was frustrating, with delays and lost scans, and nearly four months passed before I had surgery. The waiting felt endless. Back in the early 2000’s, scans/reports were kept on paper and in filing cabinets – nothing was digitised! I still feel frustrated that my scans went missing in the hospital because my treatment could have begun months earlier than it did.

Surgery and and first round of recovery
In early 2002, I had a nephrectomy to remove my kidney and tumour. Recovery was tough and harder than I expected. I took six months off work, spent a lot of time watching The West Wing, while my husband looked after me.

Explaining my diagnosis
Telling my son, Frank, was challenging. Cancer had been in our family before with a devastating outcome. Frank knew what cancer could mean – but we explained the situation carefully and reassured him about the surgery. Frank, at eight, understood the uncertainty and didn’t press for false reassurances, which was remarkable for an eight-year-old. I’d like to sit down with Frank one day and talk about everything that happened. It must have been pretty frightening for him.

Post-surgery support (or lack of)
The support after surgery wasn’t ideal. I didn’t receive much guidance from the urology team, and what support there was, was poor. I think that cancer support can be terrific, but I wasn’t offered anything useful. And I think that lots of the information is too simplistic. 

A second setback
In 2003, a new tumour was found in my lung. After waiting for months to see if it would spread, I underwent surgery again to remove it, though the situation was complicated by the possibility of a primary lung cancer.

The Whipple’s SurgeryIn 2011, I faced another challenge: Whipple’s surgery for secondary kidney cancer in my pancreas. This is complex surgery that drastically alters the digestive system. After the procedure, I faced significant physical challenges, including unpredictable digestion, and absorption, and the daily challenge of living with diabetes.  The Whipple’s has by far been the hardest surgery I have undergone and affects my life on a daily basis.

Living with the aftermath
My life post-surgery has been full of adjustments. Digestive issues, diabetes, and reduced mobility have become ongoing challenges, but my new life has also introduced me to new experiences. I play wheelchair basketball, and have a busy and interesting life working to design and improve NHS services.

Ongoing treatmentThe last ten years has brought other, diverse treatments to address my ever-present secondary tumours, including surgery, radiotherapy, and targeted drugs, so cancer continues to impact my life. I’m currently undergoing immunotherapy, which is manageable, though it brings fatigue and uncertainty. I try not to let it define me, continuing to stay active and engaged in my family life and interests.

Life continuesLiving with cancer and its aftermath does require adjustments. While my body may not be the same as it once was, I’ve found new avenues for growth and fulfilment. Life isn’t easy, but it’s still good and it’s still interesting. There’s more to life than my diagnosis.