Lying in a hospital trolley, I saw light panels moving away on the ceiling, faster and faster, as they pushed me toward a set of double doors somewhere beyond my feet.
We crashed, Oscar-winning actor J. K. Simmons let go of my hand and left my field of vision. Then the director shouted: “Cut!”
Two extras brought me tiredly to the top positions for another take, and I had a few moments to reflect on the absurdity of the situation.
It was June 2018, I was in Los Angeles filming the second series of the Counterpart television show, pretending that I needed surgery to save lives, pretending to have something very important to say and not be able to say it.
Olivia Williams (pictured) who underwent surgery seven and a half hours after being diagnosed with cancer, talked about continuing to work while fighting the condition.
But, 24 hours earlier, I had been in a real car in a real hospital for a needle biopsy to discover the exact nature of a 7 cm by 4 cm tumor that had been growing in my pancreas for more than four years.
Never before has art so closely imitated my life. Although the “stretcher race” is a fairly regular occurrence in television dramas, in all my 50 years I had never been to one before. More like a bus, you wait a lifetime for a stretcher scene, then two come at once.
In an area with curtains at Cedars-Sinai Hospital in Los Angeles, I lay in my real car waiting for the real doctor to perform the biopsy.
He sat next to me and yawned audibly.
“Are you an actress”.
He declared instead of asking, but nevertheless, I replied: “Yes.”
There was a pause.
“I’ve never heard of you.”
Usually, I don’t mind not being especially famous, but in this hospital, it seemed to be a problem. If I were famous, maybe I would be a little more understanding with the exhausting four-year search that led me to this Holy Grail of Diagnosis.
Olivia (photographed in The Sixth Sense with co-star Bruce Willis) was diagnosed with malignant neuroendocrine tumor / cancer in 2018
While struggling to think of a movie he could have seen me in, I fell into a deep anesthetic dream. “Sixth sense?” “Rushmore?”
A week later, the same endoscopy professor revealed the results in an equally abrupt email: “It’s a malignant neuroendocrine tumor / cancer, thank you.”
You might think, since this was private medicine, at least it could have given me an apostrophe.
In a way, Professor Gruff’s news was great news. He did not have the most common pancreatic cancer, adenocarcinoma, but an operable neuroendocrine tumor called VIPoma.
Not a 7% survival rate in five years, but 80%.
Several types of cancer can grow in a pancreas, the organ that plays an essential role in converting food into fuel.
Many are fast; Most people diagnosed with adenocarcinoma die within a few months of experiencing symptoms.
In July, you are playing on the beach with the children; In September, you have back pain; in October you are sold out; in November, your eyeballs turn yellow; in December you are diagnosed; By April you are dead.
Olivia intended to need surgery on the Counterpart television series (pictured) at the time of her diagnosis, after years of experiencing symptoms that include swollen hands.
In the cancer video game, I had dodged the rock, but the hairy monkey was still chasing me.
My difficult path to diagnosis began in October 2014. After a long summer filming the Manhattan television series in New Mexico, I met old friends and got into a bit of effervescence. The next morning, my hands were red and so swollen that my wedding ring didn’t fit. My joints ached and my stomach ached.
My GP referred me to an eccentric rheumatologist on Harley Street. Definitely lupus, he declared. But, after a year of medication and careful scrutiny, I was discharged with a note that said I definitely had no lupus, maybe my symptoms were related to stress? Imaginary? perimenopausal?
My GP involuntarily performed a menopause test. Negative. I felt bad about wasting your time and money from the NHS.
Symptoms persisted in 2016 and, while filming The Halcyon in London, I was tested for colon and bowel cancer. Both negatives
A small celebration for each clearing, followed by an outbreak and an understanding of 4 a.m. That was definitely not right.
Between October 2014 and February 2018, I was in two works at the National Theater in London and filmed in New Mexico (Manhattan), Los Angeles and Berlin (Counterpart) and on the Isle of Wight (Victoria and Abdul). In each place I saw a doctor, but never when I had symptoms.
Olivia (pictured) recalls the symptoms of cancer that began to affect her work in 2017, when she began to have red waves on her skin and deafening sounds coming from her intestines.
If they had seen the symptoms, would they have known that they had one in 10 million vasoactive intestinal peptide secreting tumors (VIPoma)?
This is not the type of VIP that descends the red carpet.
It grows slowly and silently in an elusive organ and none of the symptoms (diarrhea, bright red skin inflammation, low potassium level, absence of stomach acid) appear unless the tumor is secreting its malignant hormone in the same moment the test is taken
Mine were considered the natural state of any woman in her 40s, since being a perimenopausal seems to explain everything from acne to homicide.
In 2017, it began to affect my work. While filming with a microphone attached to my ribcage, deafening sounds from my intestines around the building were amplified. “That’s me,” I would say. ‘I’m sorry! Too many shoots! “
My makeup artist stood and watched as a red wave slid down my neck and reached my face.
“What am I supposed to do with this!” He exclaimed, reaching the reserved base to cover tattoos and burns.
In February 2018, while filming Counterpart in Berlin, the symptoms became so constant and unmanageable that, during a small interval in filming, I made an appointment for a colonoscopy.
Olivia (pictured) left alcohol, coffee, sugar and gluten with the hope that her symptoms would disappear, before being diagnosed.
Although the results returned to normal, inches away was a cancer twice as large as a matchbox that was growing in my pancreas. Once again I tried to convince myself that, if I was not so stressed, if I stopped drinking coffee, sugar, alcohol and gluten and never ate after 6 p.m., the symptoms would disappear.
In April, Counterpart filming moved to LA for three months. I found a doctor and kept coming back until she did all the tests in the book.
Since nobody knows the filming schedule the next day until last night, every appointment was a stir. I was so dehydrated that the nurse had difficulty drawing blood.
Many of the tests required fasting when I was already starving, then swallowing pints of light concoctions or blowing into a bag that measured stomach bacteria.
I was losing weight so fast that I had to put on my costume again every week and then every day.
Finally, a CT scan showed a mass that occupied half of my pancreas. I assumed it was adenocarcinoma and that it was over.
In my head I tried to form the words that I would say to my husband, Rhashan, and to our two daughters. It was something like: “I will probably die very soon…” Just thinking about it made the tears come out of me like an overflowing bath.
The doctor withdrew me from the edge, and that was the first time I heard the words neuroendocrine tumor, VIPoma, and a possibility that it was not cancerous.
Olivia (pictured with Rhashan Stone) remembers being on the set for a close-up about seven minutes after being told she had cancer.
I tried to go to work, but she took me directly to the hospital for a biopsy to verify her diagnosis, which is where I found myself sitting on a real stretcher, in a real hospital, struggling to think of a Professor Gruff movie could have seen me in
A week later, I was back on set, waiting for the results. The past week had been strangely elated. In a state of glorious denial, I decided that it was definitely not cancer. It was just a strange hormone-emitting lump that needed to be cut.
While I sat in my trailer preparing for a particularly emotional scene with J. K. Simmons (who, unlike his scary character in Whiplash, is gentle, kind and patient), I received Professor Gruff’s abrupt email.
My eyes fell on the word “cancer” and knocked on the door. ‘Ready for you on set. . . ’
About seven minutes after they told me I had cancer, I was standing at a mark ready for my foreground. Karsten, the Danish steadicam operator, was very close, with a camera attached to his body. Through the lens, I had known my face for the past two years. Every contraction, every smile, every tear, whether real or false.
“If I try to answer that question, there will be no more filming today,” I said. Looking at the scene now, I can see that my eyes are never at rest, as if I were waking up REM. When J. K. starts the scene with a heartbreaking moderation line, I laugh. It’s not a happy laugh, it was like the sound of a dying puppy.
The words in my mind were not the lines of the script, but the famous epitaph chiseled on Spike Milligan’s tombstone: “I told you I was sick.”
Olivia (pictured with Darren Boyd in Case Sensitive) had half of the pancreas, spleen, gallbladder, and a portion of her liver removed during surgery at King’s College Hospital in London
I didn’t feel sad, but triumphant. I went into action, gathering information on the best treatment, the best surgeon and the best specialists in neuroendocrine tumors, all of which could be found at King’s College Hospital in South London, just 45 minutes by subway from my house.
From diagnosis to surgery it was like a fast-moving movie. The production was tremendously friendly but also scared. They rushed to film the three months of my remaining scenes in the six days before I returned to London for an appointment at King’s.
The plans I had made for my 50th birthday on July 26 became plans to make sure I saw as many friends and family as I could before the seven and a half hour surgery.
It’s been 18 months since I had half of the pancreas, spleen, gallbladder and a large part of my liver removed, and I feel great. An amazing laparoscopic surgeon at King’s has left a small amount of small incisions in my body.
My digestion is aided by artificial enzymes, which I take when I eat. I entered the operation so happy that there was a solution, that I really did not understand the idea that I could not leave alive.
But, as I have learned more about pancreatic cancers, now I have more fear for my undiagnosed self than at that time. Now I know that, during those four years, I was stranded in a no man’s medical land, where there was no evidence, answers or insignificant funds.
Pancreatic cancer survival rates have barely changed in 50 years. It is revealed so late and the prognosis is so bad that sometimes the patient is transferred directly to palliative care without further evidence. The only “treatment” is to try to make the end as painless as possible.
My NHS oncologist recently “rescued” a patient with an operable neuroendocrine cancer like mine, who was already in palliative care and expected to die. It turns out that I was lucky to be referred for a biopsy, even if it was abruptly administered.
Olivia (pictured) has become an ambassador for Pancreatic Cancer UK, after the charity asked her about the lack of survivors.
What is the first movement out of this deadlock? The first is early diagnosis. For four years I had blood, stool and urine tests that ruled out a wide list of conditions.
Why are there no pancreatic cancers on that list? It is the fifth most deadly cancer and the eleventh most common cancer in England.
When Pancreatic Cancer UK asked me to be their ambassador to help raise funds and raise awareness, I noted that I was not famous enough to raise more than five.
The charity responded: “We are not asking you why you are famous.” We are asking about the lack of survivors. “
Because the reality is that the dead have no voice, cannot raise funds or raise awareness, or disguise themselves as a penguin and run a marathon for their cancer. Patrick Swayze, John Hurt, Alan Rickman, Aretha Franklin, Steve Jobs, my friend Tom Beard and maybe someone you have lost are not here to tell us their survival stories.
We are trying to raise money to help people who do not yet know they are sick.
We cannot show you a picture of them or promise that they will. But we ask you to give them what I sought for four years: a diagnosis.
I have some survivor guilt. I cannot thank those who saved my life with enough words or gifts. I cannot thank those who, despite the lack of funds, continue working to find a solution.
But I can convey your incalculable generosity by trying to raise money to find a cheap and easy-to-administer test for the early diagnosis of all pancreatic cancers, so that everyone has a chance to fight, have a bloody mindset and survive. Not only the VIPs.
Olivia supports the Demand Survival Now campaign of Pancreatic Cancer UK. Please sign the petition demandurvivalnow.org.uk