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Case study - Will

l-r Joe, Jack, Claire and Will Chiles

"I don’t know if the urine test would have saved Claire’s life, but a faster diagnosis would have enabled her to start treatment sooner, so she would at least have stood a chance."

She was known as ‘TLC’ among our circle of friends - The Lovely Claire.

And she was: Claire was a loving, joyful, strong and fiercely proud of our sons. She’d been a family support worker for Solihull Metropolitan Borough Council working alongside the child protection social workers, and then after gaining a social work degree sponsored by the council, she worked for many years as a child protection social worker herself. She then became a social worker for a fostering agency, supporting foster parents. She was very highly regarded in all her roles.

It took 5 months to be diagnosed with pancreatic cancer and exactly 5 weeks from that day to her death, aged 50. A petite, fit and active, non- smoking vegetarian who everyone adored.

Christmas 2014: our sons Jack and Joe we’re both in New Zealand- Jack had settled after completing university studies there and Joe was visiting his brother, having left school and deciding on his first career steps. We’d planned a quiet Christmas, our first without the boys, but Clare didn’t feel quite right. She’d lost her appetite and had backache.

January – March 2015: The first week in January she went to the GP, the first of several appointments over the next few months; backache, indigestion, no appetite, losing weight; nothing concrete but she knew something wasn’t right. She had the usual tests - urine, stools, was given painkillers, general indigestion remedies and told to come back if symptoms persisted. They worsened. She’d had gall stones in her youth so maybe it was gall bladder related – a referral was made. She was told to go to A&E if the pain got worse.

When the meds didn’t even take the edge off the pain, we went to A&E and she was given stronger painkillers. Back home, she was still in pain, she was vomiting her tablets and the gall bladder referral wait was 18months. She couldn’t live like this so we paid for a private consultation with help from my parents.  She had an MRI scan `and given her previous history, they decided to remove her gall bladder.  

April 06, 2015: Claire was prepped for surgery, but her surgeon appeared, having had one last check of her scan. He’d spotted a shadow. The op was cancelled but biopsies were done. Results would be ready in two weeks.

April 17: Back to A&E, where she was given morphine. The staff were so kind, they said they’d keep Claire in and keep her comfortable to save the travel back and forth because her biopsy results appointment was imminent. I think they’d already seen the biopsy results on Claire’s notes and knew what was coming.

Monday 20 April: We were told the diagnosis: pancreatic cancer. The consultant was sombre but that made us more determined to fight it. We didn’t know we had 5 weeks left.

I don’t know whether Claire went online to read up on the survival statistics. If she did, she never told me. I hope she didn’t because I can’t bear the thought of her knowing and how she must have felt. But she did once quietly say to me “I’ll won’t get to meet our grandchildren, will I?”

They told Claire that she would lose her long hair to the chemo so she had it cut short in preparation. She was preparing in other ways too, I realise now. She’d always shied away from having her photo taken but that day she asked me to take photos of her.   

Claire didn’t make it to treatment. A suspected infection lowered her blood count and she couldn’t start chemo until she was stronger. Her mum had moved in to help look after her. Claire became vague and slow; she looked through us rather than at us. She looked lost.

Saturday, 23 May: The daily district nurse advised us to take Claire back to hospital. I clearly remember Claire walking slowing to the car. I didn’t know it would be for the last time. She was admitted to the oncology ward where they managed to control her pain and she slept. Claire’s mum and I nipped home to grab some sleep ourselves.

Sunday 24 May: Incredibly, Claire managed to eat a little breakfast and our spirits lifted. She then slept. She wouldn’t wake again. That afternoon the nurses couldn’t rouse Claire for her medication. The consultant took us to one side and gently told us that there was little they could do now. I called the boys in New Zealand and they booked the next flight home.

Monday 25 May: We sat with Claire, stroking her hands, her face, telling her how much we loved her, letting her know her beloved boys were on their way. I’d love to think she heard us. She slipped away early that afternoon.  The boys were already airborne so I couldn’t let them know. They landed at Heathrow the next morning, desperate for news of their mum. I had to tell them that she’d passed away the day before.

I don’t want anyone else to go through what Claire went through. I don’t want any family to go through the helplessness of watching someone they love suffer like this. With the progress made in other cancers, why is pancreatic cancer still so lethal?

I’m proud that the fundraising our family have done for Pancreatic Cancer Research Fund since Claire died has helped to fund the research behind this biomarker test.  I don’t know if the urine test would have saved Claire’s life, but a faster diagnosis would have enabled her to start treatment sooner, so she would at least have stood a chance. 

Will Chiles, Technical Advisor for estate planning (wills and trusts)