Julie Richardson knew she was very poorly, but she didn’t want to hear any bad news. Words like ‘cancer’, ‘terminal’ and ‘palliative’ were banned.
“It was Julie’s way or no way,” explains her sister Kath Brown. “If a doctor started to talk about her prognosis or medical details she’d say ‘stop’ and insist they explained only what her choices were.
“She didn’t make it easy – but then that was our Julie.”
Julie had been ill for a while but her symptoms worsened over Christmas 2015 soon after she moved to be near parents in Gorefield near Wisbech. She was treated for gallstones but even after dozens of tests, scans and hospital appointments the pains in her stomach often left her curled on the floor, screaming in agony.
“She never got well,” says Kath. “She was so scared and got to the point where she didn’t trust the doctors because nothing made a difference.”
Julie was finally diagnosed with pancreatic cancer.
“Mum and I went with her to the appointment,” remembers Kath. “We all sat there holding hands. As the consultant started talking Julie said ‘stop. Just tell me what my options are’.”
Julie was told to enjoy Christmas with her family and offered chemotherapy, in the hope of possibly prolonging her life. She decided against it.
Achieving the best quality of life possible
Her eldest sister Barbara Herrick said: “Julie had no partner or children – it was almost as if she decided she didn’t have anything to fight for. She just wanted quality of life for as long as she could have it.”
Unfortunately her doctors struggled to control her pain.
Barbara said: “In her head Julie was going to get strong and be fine but it was all she could do to get out of bed, slip her dressing gown on and lay on the sofa.
“She hadn’t had good experiences with hospitals and she mistrusted doctors as a result. It was really difficult to get her to be honest with the medical team who were looking after her.”
That’s why her family were surprised to receive a text from Julie one morning saying she was being admitted to Sue Ryder Thorpe Hall Hospice.
“She was determined she wasn’t going to be treated the same as she was in hospital,” said Kath. “She wanted to remain fully in control of everything. It was Julie’s way or no way.”
Thorpe Hall’s doctors and nurses were happy to adhere to that.
Maintaining choice over her care
“She was very clear the doctors weren’t to deliver bad news only to give her options. They knew not to use the word ‘cancer’ or to talk about ‘death’ or ‘dying’. It was really challenging for them – we could see that. But they did it. They involved Julie every step and talked to us, with Julie’s permission, as they needed to. And they did it all within the parameters of what Julie was comfortable with.”
Julie drew up a visiting rota for her parents and sisters. She liked having Kath there in the mornings to help her with breakfast. Barbara and her Mum and Dad visited on alternate days always with gifts and flowers from the Sue Ryder shop on site.
“For the first couple of weeks Julie’s plan was to get better so she could go home,” said Kath. “As time went on it became clear that wasn’t going to be happen. And actually her quality of life in Thorpe Hall was really good. She had always been a lady of leisure – we loved our spa days. At Thorpe Hall she was given foot massages, had her nails done, Reiki and she had her hair cut and styled, all by the amazing volunteers.
Precious time together
“We spent time together as a family having a laugh with Mum and Dad. It was hard at times but it was something we hadn’t done for months.
“The love and connection between the three of us sisters during that time was amazing.
“I kept telling her how brave she was being and she cried and said she wasn’t brave. She wasn’t frightened of dying but she was frightened of the journey.”
One of the biggest challenges for the medical team came when Julie was no longer able to swallow tablets. Usually doctors set up a syringe driver, administering a number of different medications through one needle, keeping injections to a minimum and pain relief constant. Julie was adamant she didn’t want one.
“The doctor or nurse would come in with Julie’s medication and she would ask for a couple of minutes to go to her ‘happy place’,” explains Kath. “She would do a sort of meditation and imagine herself on the beach at Hunstanton. That took her mind off the injections which then didn’t hurt.
“The staff showed so much compassion that slowly they won over her trust. By playing by her ‘rules’ the doctors earned Julie’s respect. The turnaround in her attitude was remarkable. She arrived at Thorpe Hall with very fixed ideas. Gradually those ideas became more flexible and Julie listened to the advice she was being given – and took it.
“We knew she was finally comfortable at Thorpe Hall when, one morning, Julie told the doctor she was happy to have a syringe driver. She told us afterwards, ‘I go to my happy place when they’re giving me injections so it’s hurting them more than me’. She didn’t want that – she knew they were trying to help her.”
Two evenings later the three sisters enjoyed a movie night. “We loved our DVD nights,” said Barbara. “We brought in the Dirty Dancing DVD, our favourite pink wine with bubbles and all Julie’s favourite chocolates – Smarties, Rolos and Double Deckers. We sat up until 1am watching the film, dreaming up our top 10 men and enjoying our treats. The nursing staff kept popping in to see how we were and we had a giggle, with them joining in. Julie only managed a sip of drink and a couple of Rolos but it was such a wonderful night – a beautiful memory.
“That was what Thorpe Hall gave us – four extra weeks of Julie being Julie. The pain and fear were gone. She’d be the first to admit she wasn’t the easiest person to get along with and at times was, in her words, a ‘diva’ - but she was our Julie in the time she had left.”
Julie died on May 23, aged 50 with her family holding hands at her bedside. As she took her last breath the Elvis song ‘Love Me Tender’ started playing on Julie’s ipod.
“Julie hadn’t made up her mind up about the fourth song for her funeral,” said Kath. “It chose itself.”
Kath and Barbara have now pledged to carry out Julie’s wishes and support Thorpe Hall Hospice.
“Everyone there worked together to give us time with Julie,” said Kath. “It wasn’t easy for them but they persevered and found a way to make the journey Julie was dreading the best it could be. We will always be grateful for that.”
Find out more about Thorpe Hall Hospice