Helen was admitted to our In-Patient Unit (IPU) on 23rd December 2021
“We’re all about family, so Christmas is a big deal for us,” says Beth, whose mum Helen was admitted to our In-Patient Unit (IPU) on 23rd December 2021. “It was really devastating – we thought our mum was going to die within days. But they did everything they could to help us make it a special time. They went to a lot of effort to make it possible for us to have what we thought would be our last Christmas together, and that means the world.”
Helen was very ill when she was referred to our care, and was admitted to our IPU, which supports patients who are in their last days of life, or who need help with symptom management. “I was told I had just days to live,” says Helen. “Everyone was told to come and see me to say goodbye. I remember I couldn’t understand why people were crying, and things got worse. I wondered when I was going to die.”
Beth and her fiancé Rob were planning to get married in April 2022 but, because Helen was so ill, her husband Mark asked the IPU staff if the family could arrange a wedding celebration at the Hospice that week, so that Helen could celebrate with them. They said yes, and offered to book the Dove Lounge, a large room in the Hospice, which opens out onto the beautiful gardens.
The family told Helen their plans and, on the morning of the celebration, our Health Care Assistants helped Helen to get dressed and did her hair for her. They took her down to the Dove Lounge in a wheelchair, where she found that Megan, the daughter of one of our Senior Patient & Family Advisors and a wedding organiser, had decorated the Dove Lounge ready for the celebration, giving her time and skills for free. Beth and Rob were there, along with family members and some of the couple’s closest friends.
“We said our vows in front of the people who mattered to us the most,” says Beth.
“It was beautiful,” says Helen. “Beth and Rob looked amazing, and everyone had tears! Afterwards we celebrated with cake, fizz and speeches, and then when it was all over I went back to my room on the IPU, and the rest of the family went back home to party. After that day I made a complete U-turn. It changed my life. The next day I woke up and said ‘I would like some breakfast please’, and slowly I got better and better. Three weeks after the wedding I came home!”
“Before the wedding Mum was sleeping 20 hours a day; she was really unwell,” says Beth. “None of us really understands what happened. The medical explanation is that the two doses of chemo may have done their work… but a few days after the wedding she started feeling and looking so much better.”
“I was so well looked after at the Hospice,” says Helen. “The nurses were brilliant. It didn’t matter what time of day or night, if you buzzed your buzzer they would be there in a flash. After I felt better I decided that I would like a bath, so two of the nurses there helped me up and we went through the corridors with me wrapped in towels. They had run me a bath, and it was full of suds! It was wonderful. I had several baths after that. I think it’s really wonderful, that two nurses would take half an hour, that’s an hour out of the working day, to give me a bath. It was lovely, relaxing, and it helped me get better.”
“I had massages too, from their complementary therapists. I liked having my feet massaged, so they would oil them and just massage them for ages. It was so relaxing and I’m sure I nodded off half the time! There was something going on every day. There was a tea party on a Wednesday, they asked me if I wanted to go to that and I said yes, so they wheeled me down there so I could take part.”
“There was just constant kindness,” smiles Beth. “They didn’t falter. We were there a lot, especially over Christmas, and the courtesy, the kindness, was incredible. There was no ask too great. In January we went in with some cake for Dad’s birthday, and there was a ￼nurse there just going about his work, and Mum said ‘excuse me, please can we have some plates and some tea?’, and he popped his head around the door and said ‘of course’, and got some for us!”
Since Helen has been back at home, our doctors, nurses and therapists have continued to support her through phone calls and visits, and our Patient & Family Support team have helped to organise a team of carers who visit her four times a day to help her wash and get dressed. One of our physiotherapists, Ali, and Beth, one of our occupational therapists, have also been visiting Helen, working with her on rehabilitation goals, equipment provision and liaising with other teams for ongoing therapy.
“Ali and Beth have been helping me to walk,” says Helen. “In the early days they helped me to just have the confidence to get up, and then we progressed to walking.”
“They also gave Dad a really good start in terms of knowing what exercises Mum should do,” says Beth. “You can look this stuff up on the internet, but there’s so much information out there it’s hard to know where to start. They set the foundation for us being able to do Mum’s daily exercises, which have been really key.”
Our nurses have also been there during the night, when things can often seem overwhelming.
“There was one occasion when Dad was away, and my sister and I were caring for Mum,” says Beth. “One of Mum’s medications had run out, and it was a Saturday night and we were panicking. We didn’t know which of her medications did what, so I called the Hospice and the nurse I spoke to was so sweet. She talked me through it all. It was about 11.30 at night, but she talked to me for about 20 minutes and reassured me. Having a service like Phyllis Tuckwell available at the end of the phone, to ask questions, to check in with, it just makes the whole process so much easier. It makes you a bit braver in terms of looking after someone else, because you’ve got a bit of backup. Dad always calls them ‘the saints and angels of Phyllis Tuckwell.”
Helen is continuing to do well at home and we will continue to support her as her needs change. She has managed to go on a few outings locally, and in June celebrated her 60th birthday with family and friends, something none of them had thought possible earlier that year.
“My party was on the Jubilee weekend,” smiles Helen. “Mark wrote a speech, and said ‘there’s always a guest that turns up at a party that you don’t expect to be there, and today that person happens to be our hostess!’”
This year Helen and her family will be spending Christmas at home with extended family. “There are rather a lot of us when we’re all together!” says Beth. “The day will involve games, food, homemade berry liquors, silliness and hopefully a few brisk walks, which will really put Mum’s electric wheelchair to the test! I’m sure there will be some difficult moments for Mum, and no doubt we’ll all get overwhelmed at one point or another, but I just can’t believe we get to celebrate Christmas with Mum again. Every second we have with her now feels like a bonus, whether the mood is high or low. Last year was so unfathomably difficult, we’ll definitely be pulling out all the stops this year!”