It was Valentine’s Day when my world turned upside down. I was on a half-term break in Suffolk with my children. We were pottering around Framlingham with my parents when my phone rang, showing a withheld number.
I had waited more than two weeks for this call and suddenly I felt sick to my stomach.
Walking out of earshot, I picked up. The woman on the other end of the line introduced herself as Rose, a nurse from London‘s Royal Free Hospital. She had the results of my MRI scan. I needed to come into the hospital, urgently.
This was not the news I was hoping for: willing myself to stay calm, I asked her to take me through the results. I found a bench and searched my handbag for a pen and paper.
Rose said she was sorry, but I had cholangiocarcinoma (CCA), a rare and aggressive type of liver cancer, also known as bile duct cancer. I shakily scribbled the alien word down so I could Google it.
‘I advise you, don’t read up on the internet,’ said Rose. ‘If you do, it’s important you understand that from what we have seen, the tumour is operable. We can get it out. I know it’s hard, but try to stay calm.’
I took down the details of an appointment with my surgeon Dr Dora Pissanou next day and hung up.
I looked across at my children – Matilda, then 11, and George, 6, – who were eating cinnamon buns in the sunshine and laughing with my parents. Little did they know their worlds were also about to be turned upside down too.
I was overwhelmed with adrenaline and shock. How could I have a rare liver cancer when I felt normal? What would I tell the children? I called Mum on her mobile and asked to speak to her alone.
Fourteen years earlier, she had had breast cancer. Now, sitting beside me, she grasped my hand and held back tears. ‘It’s going to be OK,’ she said. ‘I’ll take the kids, you go back to London.’ I’ll never forget the sadness and fear in her eyes. It was like looking in a mirror.
Despite Rose’s advice, I went online as soon as I got home and was shocked all over again. Cholangiocarcinoma is rare. There is no cure – except for surgery – and very little is known about this type of cancer, except that the prognosis is usually poor.
The five-year survival rate for cholangiocarcinoma that hasn’t moved beyond the bile ducts is between 18 and 23 per cent. It drops to 2-3 per cent for cancer that has spread.
Having such a rare and aggressive liver cancer – with an abysmal survival rate – was unbelievable. I was 46, fit and healthy. I exercise regularly and drink very little.
I had, however, had intermittent heart palpitations and what felt like severe indigestion on and off for several months, but had put this down to stress.
The previous 12 months had been particularly busy: I had written two books, co-hosted a podcast for Vanity Fair magazine, and covered the death and state funeral of the late Queen Elizabeth II in my role as a royal commentator for numerous networks including the BBC, NBC in America and CBC in Canada.
I also had a home to run and two children to care for. I had blamed fatigue, or the perimenopause, for my racing heart. Not for a moment did I suspect a tumour the size of my palm was obstructing my liver.
I went to see my GP just before Christmas 2022 after a friend urged me to go for check-up. The doctor thought I was on the brink of burnout and suggested I took a break from work.
He ran blood tests (all the tumour marker readings were in normal range) and agreed to send me to a cardiologist to rule out any underlying heart issues.
After an ECG and CT scan of my heart, I was signed off by the cardiologist with a clean bill of health but a stark warning. ‘Miss Nicholl,’ he said; ‘Please remember stress is a killer.’
Before I left his office, I asked the consultant if he would refer me for one final scan. My father had suffered an aortic aneurism, a potentially fatal and hereditary condition, and my siblings and I had been advised we should be scanned as a precaution.
The consultant agreed – a decision that saved my life. During the routine ultrasound of my abdomen, a suspicious lesion on my liver was detected.
When I met Dr Pissanou – who I would come to know as Dora – she said there was no time to waste as bile duct cancer spreads quickly. Potentially curative surgery is only offered to patients with early stage, localised cancer where there is a good chance of cutting out the tumour.
I had an intrahepatic CCA (within the liver) and would also require the removal of some lymph nodes and my gall bladder.
Dora looked me in the eye and told me this was going to be a fight, but that I was strong and fit and I could get through it. Having successfully had five rounds of IVF to have my children, I was determined to see them grow up.
Although scared, I felt a connection with Dora and believed she could do what needed to be done. I also had faith in myself. Being fit and healthy would stand me in good stead. The liver is the only organ that can regenerate, so a full recovery was possible.
Dora was able to operate the following week. I cancelled all work commitments. I decided not to tell the children I had cancer and just told Matilda and George I needed to go to hospital for an operation on my liver. They were worried, but I said I would be OK.
I wrote letters for them to keep under their pillows to read while I was away. I told them how much I loved them, that they were the best children in the world and that ‘Dora the Explorer’ as they had nicknamed her (after the TV character), would be getting the ‘green rabbits’ out of my liver.
The week before my procedure was fraught. I had endless to-do lists and after-school club pick-up rotas stuck to the fridge – I wanted to keep the children’s routine as normal as possible. I batch cooked meals and froze them, sent the last, hurried chapter of my book to my editor in New York and packed my hospital bag.
I hugged the children extra tight every night and went into their bedrooms to watch them sleeping. I would kiss their hot little heads and promise I would always be there for them. Leaving for the hospital at dawn on February 24, 2023, I was shaking with nerves.
What was meant to be a six-hour surgery turned out to be an 11-hour procedure. When I came around in ICU, Dora was standing over me in her blood-stained scrubs, beaming. ‘I got the beast out,’ she told me, her eyes flashing. ‘You are going to be my champion, Katie. Now rest.’
I drifted in and out of consciousness for the next two days, vaguely aware of my family at the end of my hospital bed or holding my hand.
I spent 12 days in hospital because a leak in my bile duct meant a second surgery. Being wheeled into the theatre again was my lowest moment. I was weak, in a huge amount of pain and cried as I struggled to get onto the table.
But the insertion of a stent into my bile duct was a success and from then, my recovery was remarkable. I began with circuits of the ward, then the hospital steps, progressing to gentle walks on London’s Hampstead Heath with my father.
Video-calling my children before school and when they came home kept me going. I missed them terribly, but only allowed them to visit when all my tubes were out, and I looked like ‘Mummy’ again (albeit a stone and a half lighter).
I was not able to eat for days after surgery. Added to the stress, the weight had dropped off and I looked tired and gaunt. My mother, who was looking after the children, sent my father to the hospital each day with home-made chicken broth.
When I went home Mum moved in to help. I was not strong enough to climb the stairs and was not allowed to drive or lift anything heavy, like shopping bags or a laundry basket.
It was three weeks before I got the results of a biopsy, but thankfully, it showed clear margins where the tumour had been and the lymph nodes were disease free.
It was the best news I could possibly hope for – putting me in group that has the better survival rate –and I burst into tears of relief.
There was still a six-month course of preventative chemotherapy to face, which I began in April. Under the care of oncologist Dr Daniel Krell at the London Oncology Centre, I was prescribed capecitabine, to reduce the risk of recurrence.
I was worried about losing my hair (as my mother had) and suffering from fatigue and nausea, but I tolerated chemotherapy quite well.
I did, though, suffer palmar-plantar erythrodysesthesia – extreme pain to my hands and feet which felt sunburnt and made my skin shed. Walking was painful and my hands were so red raw I couldn’t wash up or open the fridge door.
Matilda and George would take it in turns to give me foot massages and we spent evenings cuddled up on the sofa watching Modern Family and laughing – definitely the best therapy for me.
I was determined to get into nature as often as possible, knowing it was vital to my healing and recovery. Each day I walked in the woods by my house where I used to run 5km a day.
I tried to take a rest while the children were at school, went to bed early and nourished myself with green smoothies and more of my mother’s home-made chicken soup. Every day I got stronger, physically and mentally.
I was wanted to return to work briefly that May to cover the Coronation of King Charles III. I have covered royal weddings, births, and funerals but never a Coronation. It was an important moment, one which would form the epilogue to my latest book, The New Royals.
Dora said that seeing me back on TV while going through treatment made her very proud – and standing outside Westminster Abbey, broadcasting on the historic event to millions of people in America was one of my proudest moments, too.
I did take time off afterwards, though, so I could heal properly and come to terms with my diagnosis.
I went for counselling and worked with various healers including wellness guru Katie Brindle, who treated me holistically alongside the Western medicine.
I have always used alternative treatments like homeopathy, reflexology and acupuncture, which I knew would help at a time when my mind could be overcome with fear and my body needed extra support.
Katie’s work, which includes body tapping and Qigong (a Chinese practice involving movement and breath work), resonated with me. regular acupuncture sessions helped alleviate some of the side effects of the chemo. I also meditated daily and kept a journal to help me process everything.
My oncologist was open to me using homeopathy but only after completing chemotherapy. I also visited the Sun Kyeong centre in central London for regular energy sessions. These involve using light, touch and sound to release tension and restore the circulation of Qi (energy) in the body.
During my woodland walks, I meditated and visualised my liver –now cancer free – regrowing. My last scan showed that my liver has grown to 85 percent of its original size. Miraculous.
I wrote to my GP to thank him for referring me for the crucial ultrasound scan. He said he had never before come across a cholangiocarcinoma and would pin my note up in the staff room to remind colleagues that there should be greater awareness of this rare disease, that is on the rise in younger people.
CCA accounts for fewer than one percent of all cancers – but I have now met many fellow sufferers through AMMF (The Alan Morement Memorial Fund), the UK’s only cholangiocarcinoma charity.
The past two years have been quite the journey. Echoing the neat scar that runs the length of my torso, my life has been divided into two – before and after cancer. I am still coming to terms with being in remission, but in many ways my life is richer.
I have a deep sense of appreciation for the simple things and I am so grateful for the support and love of family and friends.
I now prioritise my health. I make time to be in nature, to meditate, to enjoy sunshine on my face or coffee with a friend. The school run is never a chore as I know how lucky I am to see my children growing up.
I remain cancer free, but have MRI and CT scans every three months. Later this year these will drop to six months, then yearly.
I know I must reach the all-important five-year milestone, and will never be as carefree again – which does make me sad. But I remind myself I am one of the lucky ones. My cancer could so easily have been missed.
See the website of AMMF – The Cholangiocarcinoma Charity for more information: ammf.org.uk. Katie is fundraising for Maggie’s Centres at justgiving.com/page/katie-nicholl-1
