Fiona Carey, patient

Fiona has a genuine lust for life; fit, active and heavily involved in NHS regional and national patient forums, with supportive lifelong friends and a loving family. But 20 years ago, she was diagnosed with kidney cancer, and has had an intimate relationship with Addenbrooke’s ever since.

Fiona has had eight tumours; in her kidneys, lung, gastrointestinal tract and abdomen. She has undergone major surgery on several occasions, including a life-changing Whipple’s surgery that left her in a critical condition and involved a year-long recovery. The Whipple’s was predicted to be ‘life-changing’ and it was. The loss of her pancreas caused diabetes and permanent digestion problems, and the extent of internal scarring limits her mobility, although her lightweight wheelchair solves most of that problem.

“I was 40 when diagnosed with kidney cancer and loved my job as Deputy Director of Communications at the Open University. My team were amazing – I adored them, and we were passionate about, and proud of, our work, creating the single main source of information to students and enquirers about studying with the OU. But in 2000, with literally no symptoms other than a cough, I found out I had a big tumour on my kidney, and had a radical nephrectomy.

“Two years later, and again displaying only a slight cough as my main symptom, I was diagnosed with a secondary tumour, and had surgery at Papworth to remove a section of my left lung. Because my cancer is metastasised, I have regular scans, and always will. A ‘good thing’ about my cancer (and yes, everything is relative), is that it is ‘indolent’ (slow-growing). So, over the years, my clinicians and consultants have mostly been able to detect subsequent tumours relatively early. It’s an odd thing that my cancer itself has never made me unwell or produced symptoms.

“I continued to work over the years while managing and living with cancer. By 2011, I was 50, fit and still very sporty, leading a team of 12 - at the height of my career, you might say – and I was seven years on since the last secondary. It was quite a shock, if not entirely surprising, when a routine scan showed two small secondary tumours in the head of my pancreas. This brought about the Whipple’s operation. It’s a huge operation, involving the removal of a lot of offal, and massive reconstruction of the upper GI tract. My consultants were very clear with me about the procedure from the start. The oncologist and surgeons explained that it was risky and complex, and that it would be life-changing. It is considered to be the most complex operation that is carried out at Addenbrooke’s. The surgeon predicted a very difficult first six months of recovery, followed by slow progress for another six, and never being quite normal again. The surgery would also remove two lobes of my liver (which looked suspicious but turned out to be healthy) and took around nine hours in all. The next day internal haemorrhaging led to four hours of emergency surgery, major blood transfusions and I was ventilated for a period. So, it did turn out to have been risky. It was an important lesson, because although I’d been warned of the risks, I’d rather assumed that they only applied to older, ill people, and I didn’t count myself as either!

“I ended up being in hospital for more than three weeks, and in ICU for a week or so of that. I was about as tubed up as it’s possible to be; I counted 15 lines at one point, and that was once I was awake enough to count. I was pretty poorly: it was 10 days before I missed, and asked for, my glasses. I have some very clear memories of ICU and afterwards, some of them very, very frightening, and twice thought myself that I might not make it out. I know that family and friends visiting me on ICU had similar thoughts.”

Fiona managed to fight through and, with the care and love of her family, recovered at home. The lasting effects of painful, widespread abdominal adhesions mean she can’t walk any distance, but with her wheelchair she feels liberated and lead a busy, sociable and fulfilling life.

Post surgery and wheelchair basketball

“I went back to work after about a year, but couldn’t do the job I’d been doing, and ended up retiring in July 2012. Watching the 2012 Paralympics was also another life-changing moment for me – I fell in love with wheelchair basketball. I now play in a mixed National League team, and captain a Women’s League team. Wheelchair basketball is fast, and intensely competitive, and I can’t say how much it does for good mental wellbeing. During Covid, I’ve also taken up wheelchair boxing, and I’m doing that about four times a week.

Being a patient rep

“2012 also saw me ‘accidentally’ getting involved as a Patient Representative, first at Addenbrooke’s but then at a regional and national level. I’ve chaired a national organisation promoting ‘Co-production’, and been an Expert Advisor to a parliamentary body. I’ve also spoken at numerous conferences, at Westminster, at NHS Expos, and elsewhere. I firmly believe that when services are being designed or improved, it makes sense to ask the people who use those services. People with long-term conditions, whether it’s cancer, diabetes or whatever, are themselves experts who mostly manage their own conditions themselves. Involving them early in design processes produces a better end-product, that’s likely to be quicker and cheaper than one that needs endless revising.

“Oncology at Addenbrooke’s has been receptive to the idea of Co-production, and with the new cancer hospital, has involved patients right from the initial design meetings. We’ve had a real voice within the process. It’s a really exciting project, one we all want to get right. It’s been a long time coming but will massively benefit cancer treatment and research for many, many years to come.”

Life with cancer, and ‘given your history’

Fiona has had a range of treatments for eight tumours over the years, including multiple radio-frequency ablations, radiotherapy, and more surgery.

“I have scans twice a year now, less often than previously, partly because my cancer is ‘indolent’, and partly in order to reduce the stress of three-monthly scans. Scan time, and the build up to it, are inevitably difficult times, with sleepless nights and anxiety. And of course, every headache or tummy-ache scares you half to death. Every symptom presented to a doctor gets a ‘Hmm, given your history we’d better check that out…’ and I’ve literally lost count of the number of biopsies I’ve had, ‘just to be on the safe side’. I’m glad that I’m ‘with’ Addenbrooke’s, though, and have great faith in my Oncologist and the many talented people who deliver my care.

“We’ve been watching a couple of tumours that have been slowly (indolently) re-growing years after being irradiated, and have just decided – with the Oncologist - to start drug therapy in autumn. I’m not looking forward to it, and it’s going to play havoc with my basketball, but it’s the sensible thing to do.

“Life with cancer is tough, without a doubt – the stuff going on with your body, and the stuff in your head. I get periodic flashbacks to my biggest operation. I think that when it’s really tough you’re allowed, very occasionally, to howl in a foetal position. But mostly, living with cancer isn’t about drama or heroics, it’s just about dealing with it as best you can. You take a deep breath and put one foot in front of the other, and you keep on keeping on.

Becoming a grandmother

“BUT I turned 60 in 2021 – a big milestone, and not one I’d expected to reach. In 2003, after my first secondary, I don’t think anybody would’ve predicted that I’d be here, and in good nick. Yet, here I am.”

Turning 60 was soon eclipsed by a milestone that is even more special for Fiona; her grandson was born on her 61st birthday – which by extraordinary coincidence is also the same day as her son’s birthday.