Aged eight, sitting at the dining room table, in despair, I stared at the numbers on the page, it was long division, the numbers seemed incomprehensible. But a strong cup of tea and a biscuit served with a “keep trying, don’t give up, you will get it” in the unmistakable soft and gentle timbre of my mum’s voice, spurred me on.
For weeks I battled with the numbers, some days they defeated me, and the soft voice would always say do not give up you will get it. It was a Tuesday when suddenly I was able to make the connections and everything, I had learned dropped into place those invincible numbers were defeated by the tactical application of persistence and support.
A few years later on a cold Christmas day where the frost was crisp underfoot, I was wearing a furry Russian style hat and tears were streaming down my face as I clutched the holly wreath. Then as I looked up, I saw my auntie she asked, “what is wrong” I replied, “My mum doesn’t want to come.” It was the year after my father had died suddenly. My mother never dealt with her grief she spent the remaining 20 years of her life frozen in misery and paralysed by the effects of sudden bereavement. She was in a constant battle with her heart wrenching grief, despite this, I never gave up on her.
26 years later my husband Seth is in hospital, I visit him, when I walk into the room there is a cloying sense of doom. Seth turns to me with absolute desperation in his eyes and with a quivering voice tells me he has late-stage pancreatic cancer. Seth died aged forty-nine just 33 days later, he gave me a precious gift. He asked me to share our story to raise awareness, his altruistic way of giving me a purpose that I would never give up.
In the hours just after Seth died, I could not move. It felt like a swathe of warm stiff concrete had started to settle around me, enveloping me, keeping me upright, keeping me from falling apart and stopping me from moving.
But eventually I did move ….I could never give up, so I shared Seth’s story to raise awareness of pancreatic cancer and its signs and symptoms.
My twitter feed went mad, pinging notifications, it was just after people heard me talking on the radio 4 news show Today, they were messages of support, congratulations, and encouragement. But the plaudits felt hollow, pointless, because it didn’t matter what I did Seth was still dead, he always would be.
Over the course of the last seven years, I have met many people affected by pancreatic cancer, I have worked with charities, NICE guidance committees, the National Cancer Research Institute, pancreatic cancer and end of life research groups and many individuals and organisations who used Seth’s Story the film, the educational resource, and the play.
On a daily basis I share the signs and symptoms of pancreatic cancer on social media, I advocate for improved end of life care, I work to improve the psychological support given to families and patients where there is a late diagnosis with a short prognosis. Many people support my work; some are friends, some are colleagues, some are people I have never met or spoken to who support awareness raising on social media. People who read like, and retweet to get the messages out about signs/symptoms and statistics/
Why do they do this? Because often they have experienced the pain, anguish and often loss that comes from a pancreatic cancer diagnosis, because Seth’s and my story is their story too. There are also people who read the stark facts about the disease, they want to support and share signs and symptoms because they know that so easily pancreatic cancer could appear in their lives and impact on the life of their loved ones. People don’t want to confront the thought of facing a disease where there is little choice but to give up; to succumb to the inevitability of outcome of such a late diagnosis. They don’t want to give up, but the abiding lack of hope makes the giving up as inevitable as the outcome.
Many people do not know the signs and symptoms which means that only 2 in 10 people in the UK get chemo, which gives people a little more time to say goodbye, to have the conversations with their families, to tell them how much they love them. The families do not want to give up, but the patients know they have a disease where the 3 in 5 people die within 3 months of diagnosis. The inevitability of death hanging over those final months; where there is no battle with the cancer; the battle is with the searing pain of wanting never to give up but knowing that giving up is inevitable.
Then there are the remaining seven in ten people who are diagnosed so late like Seth who get no treatment whatsoever. Gemma, who went to the GP 10 times, being treated for IBS, stress, gallstones but those vague symptoms were pancreatic cancer. Gemma died aged twenty-seven just a few months after diagnosis.
Two years into my awareness raising, Ruth my GP colleague told me that one of her patients was diagnosed early enough to be the one person in ten in the UK to get potentially curative surgery. This was the first time in 35-year career that Ruth had diagnosed pancreatic cancer, because 45% of people are diagnosed in an emergency setting. It’s the vague symptoms, back ache, weight loss, indigestion, lethargy that are acting as red herrings to GPs.
On behalf of Seth and Gemma, and 10,000 people across the UK who die each year I am asking you to act, to make sure we have more people like Ruth and her patient.
November is pancreatic cancer awareness month and 18th is the world pancreatic cancer awareness day.
I need 100s of you to make a pledge to #ShineA Spotlight4Seth or to #Sparkle4Seth go to the link here to make your pledge
I can’t give up on pancreatic cancer because it killed Seth in 33 short and heart-breaking days.
I don’t want anyone else to feel the pain and despair I have felt, and I know that you will help because I know that you never want to be Seth or Lesley so make your pledge. Don’t give up on pancreatic cancer, people with pancreatic cancer need you and I need you to support Seth’s legacy in memory of the most wonderful man – Seth Goodburn