Lucie’s Story – supported by Phyllis Tuckwell

“Lucie was always smiling,” said Simon. “She was full of happiness and kindness.”

We met 23 years ago and were friends for a long time before we got together. Then we moved in together, had children – Seby, who’s now ten, and Scarlet who’s eight – and got married in a beautiful little chapel in the Czech Republic. After she became ill, she never once complained about the hand that fate had dealt her, or asked why me? She just accepted it, and was brave and strong right to the end.”

Lucie had been diagnosed with fibroids and was admitted for a planned hysterectomy in March 2020. During the operation, however, doctors discovered that what they had thought was fibroids was actually a tumour. Lucie had a sarcoma, a rare form of cancer. The doctors removed the tumour and an MRI scan confirmed the all clear. “It was as though she’d been diagnosed and cured all in one go,” said Simon. Lucie had regular scans to check that the cancer hadn’t returned, but her scan that September showed that it had come back, and had spread to her liver and lungs.

“It was a terminal diagnosis, and we were told that without treatment Lucie probably had about 12 months,” said Simon. “She was offered the opportunity to take part in a clinical trial which The Royal Marsden Hospital was running, which was where she was being cared for. It was a combination of chemotherapy and immunotherapy, and they thought it might extend her prognosis to around two to three years, so we decided to give it a go.”

“Lucie arranged for us to have some family photos taken before the treatment began and she became too ill, and after that we went on a family holiday. We took three weeks out and travelled to the Netherlands and Germany. Sadly we couldn’t go to the Czech Republic, where Lucie’s family is from, as we would have had to quarantine afterwards because of Covid regulations, and Lucie’s treatment was due to start at the beginning of November.”

“Lucie was due to have the treatment every two weeks, but her body didn’t react well to it. She started to suffer from increased pain and sickness, and we had to delay some of the sessions to give her time to recover. We took a break from the treatment over Christmas and spent it at home, as a family. It was a really lovely time and Lucie felt fine for those few days. After Boxing Day she went downhill though. The tumour had started to grow quite rapidly and she was in a lot of pain.”

“We spent New Year’s Eve at The Royal Marsden, discussing Lucie’s next treatment with doctors. It was quite a harsh chemotherapy and it was due to start in the first week of January. Her prognosis was now down to around ten months. She went in for her first session, expecting to be there for four days, but she didn’t come home. She became really ill and the Doctors kept her in. This was all during the pandemic, so I wasn’t allowed to visit her at all and had to rely on phone and video calls to keep in touch. On 17^th January we were allowed in to see her. It was Scarlet’s 8^th birthday, and we were given special permission to spend the day there.”

Lucie stayed at The Royal Marsden for three weeks, after which she was transferred to the In-Patient Unit (IPU) at Phyllis Tuckwell Hospice. The 14-bed IPU offers 24 hour medical and nursing care to patients who need symptom management or are in their last days of life. Its Doctors and Nursing team are supported by Occupational Therapists, Physiotherapists, Complementary Therapists, Counsellors and a Pastoral Care & Chaplaincy team. As well as caring for patients, the team also supports patients’ families and carers too, at this difficult time.

“Lucie stayed at the Hospice for about two and a half weeks,” said Simon. “She seemed relatively well during that time. She was still able to walk and could chat to the staff, so they really got to know her as a person over those few weeks. The kids and I visited every day. We would walk in the Hospice garden, or sit and play games in Lucie’s room. It was January, so it was really cold outside and there was snow on the ground. The kids decided they wanted to build a snowman in the Hospice garden, and Lucie helped them. One of the staff saw them and went to fetch a carrot from the kitchen for the snowman’s nose. It was really nice, a bit of normality in an unreal situation.”

“Everything had moved so quickly. When Lucie was transferred from The Royal Marsden, her prognosis was that she would probably die within ten days. We’d had some counselling there and they’d given us advice on how to tell the children about Lucie’s illness. At the Hospice we spoke to Karen, one of Phyllis Tuckwell’s counsellors, and she talked us through how to now tell them that Lucie was going to die.”

Phyllis Tuckwell’s Patient & Family Support team includes Counsellors and Chaplains, as well as Welfare Advisors, Benefits & Entitlements Officers and a support team for children and young people. Counsellors are trained in how to help families, including children of all ages, before and during bereavement, and were able to offer Simon and Lucie specialist advice on how to discuss Lucie’s death with their children.

“Seby and Scarlet had thought that the Hospice was a hospital, just one that was a bit closer to home, but we explained it was a special place which looked after people who were going to die. We went out into the garden to tell them. There’s a little arbour there which looks out onto the grass and trees, and we sat in there. It’s hard. Your instinct as a parent is to try to protect your children, but actually involving them is the best thing to do, because then they understand what’s going on. They can see that Mum’s getting worse. They need it put into their terms so they can understand it properly. Karen helped us to do that.”

“During Lucie’s first stay at the Hospice, we were allowed to visit for a couple of hours a day. The UK was still in lockdown so the kids were home schooling, which made visiting easier. Jill, one of Phyllis Tuckwell’s Pastoral Care & Chaplaincy team, also phoned me regularly to update me on how Lucie was getting on, which was really nice. Lucie had set out her mornings. She wanted to write Christmas and birthday cards for Seby and Scarlet for each year until they were 18. She also wrote cards for their 21^st birthdays, for when they got engaged, when they got married, and a card for each of their first children. We hadn’t had time to go shopping for the cards, so she wrote her messages on A5 pieces of paper. She also made video recordings of her reading stories for them. Two of the stories were books that the Pastoral Care team at the Hospice had given us, which were about helping children to come to terms with death. As well as being very special for the children, doing all of that also gave Lucie a focus, and helped her to think about it all.”

“Because of the chemotherapy Lucie had received at the Royal Marsden, her hair had started to fall out. It was a really emotional time, as Scarlet had always loved Lucie’s long hair, and Lucie was worried about how Scarlet would feel about it all falling out. Lucie chatted to Sharon, one of the Ward Sisters on the IPU, and she kindly offered to shave Lucie’s head for her, so that her hair didn’t keep falling out in patches. She brought in some clippers from home and did it in Lucie’s room. Lucie looked beautiful – she always did – and we were relieved to find that Scarlet wasn’t at all upset about it, she thought Lucie looked beautiful too.”

“It was Lucie’s 44^th birthday at the end of January, and she was well enough to come home for the day, which was really nice. A few days later, the staff at Phyllis Tuckwell decided that she was well enough to be discharged, and she came back home for about four weeks. We didn’t realise that would be an option – we had thought that when you’re admitted to a hospice, you go there to die. We hadn’t been expecting her to go to a hospice at all, but then once she was there, we weren’t expecting her to come home.”

Lucie and Simon were supported by Phyllis Tuckwell’s Community team and the local District Nurses. The Community team supports patients who are living at home, providing them with access to our holistic team of Doctors, Nurses, Health Care Assistants, Clinical Nurse Specialists, Therapists, Counsellors and Chaplains, whom they can speak with over the phone, or who can visit them at home if needed. They also work closely with other local health care providers to make sure care is integrated and seamless for the families they are looking after. The team is available 24 hours a day, and Simon was able to phone if he needed any help or advice.

“It was really reassuring, having the support of the Community team,” said Simon. “We knew that we could call them any time of day or night if we had any problems. It was very important and really comforting for me. When someone you love is in pain, having medical expertise on hand is important. I was really impressed with how well Phyllis Tuckwell’s staff integrated with Lucie’s District Nurses and the wider local care teams.”

During her last week at home, Lucie’s health deteriorated quite quickly. “On the Monday and Tuesday we were still able to go for walks, usually once or twice a day for half an hour or so. On the Wednesday morning Lucie wasn’t able to go out, but she could still manage the stairs. Olga, one of Phyllis Tuckwell’s Occupational Therapists, visited that morning to assess Lucie and see what equipment she needed to help her around the house, so that she could keep her independence for as long as possible. She arranged for a hospital bed to be delivered, so that Lucie could sleep downstairs in the lounge in a bed which would support her properly, as the tumour was big and heavy by that stage. She also ordered Lucie a commode, a walking frame and a few other bits that she might need. By Wednesday evening Lucie had worsened further, and I had to help her just to stand up. The tumour was growing so quickly, you could see the size difference from one day to the next. On the Friday we received a call from Dr Helen, one of Phyllis Tuckwell’s Doctors. She explained that she would be on call that weekend, and that as she hadn’t met Lucie before, she was going to pop over on her way home from work that day, so that she could see Lucie in person. That way, if we needed to call over the weekend she would know more about Lucie’s condition and would be better placed to advise us.”

“When Dr Helen arrived, she assessed Lucie and gently explained to us that she didn’t think Lucie had very long left. She advised us that she was going to arrange for her to be re-admitted to the Hospice In-Patient Unit. She also organised for Lucie to have a catheter fitter, and gave us some more pain relief in case Lucie needed it over the weekend. After she had left, the Hospice Care at Home Nursing team rang to say that they were on hand if we needed them, and not to hesitate to call. It was all very reassuring; we really felt as though we were in good hands.”

“At 10.30 the next morning, we got a phone call saying that there was a bed on the IPU for Lucie. I drove her there and lifted her out of the car into a wheelchair which they had ready and waiting for us. The Nurses took her down to the IPU while I went to have my Covid test, and I joined her about 40 minutes later when I’d got my negative result. She was very ill, but happy to be back there. She was still smiling, but she was ready to die. Throughout it all she was so accepting of her situation, a lot more so than I was. She had said right from the start that she didn’t want to die at home. She didn’t want the children to see her when she was really ill, and she didn’t want me to have to look after her. She hated that loss of independence; that really upset her. She wanted to lose her independence to someone else, not to me.”

Because Lucie had been comparatively well when she had stayed on the IPU the first time, the staff there had been able to chat with her and get to know her as a person. “That helped a lot. We felt like we already knew them. They were all so kind and caring, not just the medical and nursing teams, but everyone there. They cared for Lucie, but they looked after me too. They would bring me cups of tea and ask me whether I’d eaten. People often think hospices are full of doom and gloom, but it’s the contrary. They’re full of people helping other people to live the best life they can for as long as they can. For a place where there is a lot of sadness, there is also a cheerful team of people who work there. We felt safe there; it’s where Lucie wanted to be.”

Seby and Scarlet also have fond memories of the Hospice. “They looked after my mum extremely well,” said Seby. “Every day they came with a trolley and gave my mum soup and tea, and they gave us chocolate and diet cokes when we visited.”

“The Saturday that Lucie was admitted was the last day we had normal a conversation,” said Simon. “I went back on the Sunday and took the children with me; we knew it would be last time they would see her. When we arrived, Seby and Scarlet went out into the garden to play, while I went to see how Lucie was. She didn’t want them to see her so ill, so they just came in for a few minutes to say goodbye, and then my parents came and picked them up. I stayed for rest of visiting time, and came back every day that last week. I would sit and talk to her, even though she couldn’t really talk back by then, she just wanted to sleep. Jill sat with me one time and chatted to me and to Lucie. She said that even though Lucie couldn’t respond, she could still hear me, and that it was important for her to hear familiar voices. Afterwards, I told Lucie’s parents and brother that too, and they made some audio recordings which I played to her, just chatting about their day or talking about happy memories they had of things they’d done together in the past. When she was conscious I would show her photos too, of happy times we’d all spent together.”

The following Saturday, Simon received a phone call at 3.10am from staff at the Hospice. It was 13^th March, his birthday.

“They said that Lucie was in her last few hours, and that I should come in. I phoned my parents and they came over to look after the kids. I’d already said to Seby and Scarlet that if they woke up one day and my parents were there instead of me, it was because Mummy had got more ill and was going to die. They were quite matter of fact about it. My parents told me that when Seby and Scarlet woke up that morning and saw I wasn’t there, they said that must mean Mummy’s going to die today.”

That last week I’d had a chat with one of the Nurses at the Hospice, and she’d talked me through the dying process. She had explained what happened to people in that last stage of life, so I was more prepared for those final hours. I was really glad she’d taken the time to do that. When I arrived, two Nurses were sitting by Lucie’s bedside, holding her hand. She was unconscious. I sat down next to her, and one of the Nurses stayed with me for about an hour. I sat with Lucie, holding her hand, for 12 hours, and she died just after 4pm.”

Lucie didn’t want anyone to attend her funeral; she didn’t like the idea of people travelling and getting together in large groups when Covid was still such a risk. Her family lived abroad so they couldn’t come, and Lucie said that if they couldn’t be there, she didn’t want anyone there. In the end it was just me, Seby and Scarlet, and my parents and sister. We web-streamed it so that Lucie’s family and our friends could watch it virtually. Lucie loved pink, so I wore a pink shirt and Scarlet wore pink tights. At the end of the service we played ‘Lucy in the Sky with Diamonds’. I put together a photo display of people releasing balloons and sending messages to Lucie – it was a nice way for the children to say goodbye and let go.

After Lucie’s death, Seby organised a cake sale at his school to raise money to help fund Phyllis Tuckwell’s care. “I went to see my headmaster at break time, with some friends,” he said. “He made a menu on his computer, and sent it to two classes in the school. They could order either brownies, cookies, plain cakes or lemon drizzle cupcakes. When he got the orders in, he came to my class and asked me and my classmates to make 65 brownies, 46 cookies, 5 plain cakes and 14 lemon drizzle cupcakes. My classmates were happy to help and they came to school with all the cakes we needed the next week. My headmaster delivered them to the people who had ordered them. Scarlet and I helped count all the money up and the result was £165.40. I thought it would be good to raise money for Phyllis Tuckwell because they looked after my mum extremely well and helped her to have a good time before she died. I liked running around in the gardens and sitting on the bench on the hill. We built a snowman in the winter and the nurses gave us a carrot for the nose. I felt very excited to give them this money because I know that they will use it to help other people in need, and they might use it in the garden.”