Marilyn’s story

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"I thought I was going to St Clare to die; I was so weak. But, the way St Clare cares for people is an eye-opener. St Clare literally gave me back my life, my sense of self and my independence."
Marilyn and husband at home

“My husband John and I have lived in Epping for almost forty years and spent our working lives in education. I started as a teacher before moving in 1980 to Essex community education to run youth clubs and adult education. When I retired from this in 2004, I decided to set up my own adult education and residential course company. I’m interested in “seriously useless education”, no certificates! All the things that older people enjoy, keep the mind active and engage people with each other in a social context because that’s really important, especially for people on their own. I enjoyed ten years doing that, but I had said I would retire at the end of 2014, so I wound the company up last Christmas.”

“I already knew I had endometrial cancer having been diagnosed with it in May 2014. I was under the care of University College London Hospital (UCLH) and the operation and chemotherapy treatment went very well. Everything was under control until we went on holiday in April 2015, when I came back knowing that things weren’t right. My next hospital appointment was brought forward and we found out that the cancer was active again. The day before I was due to see my oncologist I felt so ill I was admitted to Princess Alexandra Hospital in Harlow, where they discovered I had a blocked bowel.”

“I was transferred back to UCLH and spent three weeks on nil by mouth. It was very weakening. At the end of this, they explained that there was nothing more they could do, it was therefore palliative care and then end of life care.”

“I thought that was the end of my journey. So we did all the practical things, like organising the funeral. From John’s point of view, it released him from all sorts of anxieties. I have two sons, Mark who now lives in North London and David, who lives in Norway with his wife, Kristine, and their two daughters Andrea and Freja.  David flew over with his family, so I could see them again.”

“I spoke to a lovely man at UCLH, who I think was the discharge officer, and asked if he could get me into St Clare. I’d never been to St Clare, but I’ve known about it for many years. I’d known other people who’ve been cared for by St Clare, so I knew it was a place of safety. I was so pleased and relieved to hear that there was a bed for me.”

“At that time I thought I was coming to the hospice to die, I was in such a bad state. When I arrived, I couldn’t move. I couldn’t do anything, couldn’t even lift my feet onto the bed. It took two people to get me into bed, two of them to get me up and go to the loo. I was totally helpless.”

“But right from the start, the staff and volunteers gave me so much encouragement in so many ways. They encouraged me to eat, little and often. If I didn’t fancy what was on the menu, then they made me special things. Whatever I felt I could eat. They were really tremendous. It gave me my strength back. And they encouraged me to do things for myself, it was challenging, but they were so supportive.”

“When I was first transferred to St Clare’s Inpatient Unit, I didn’t think I’d ever go home again. The hospital was good, but St Clare gives you one to one attention, sometimes two to one attention! I’ve had the doctors, the nurses, the physiotherapist, the occupational therapist, the volunteers, just so many people involved in caring for you, being so encouraging. They make you feel like a real person and not just a patient.”

“And they cared for everyone, my husband, my sons, my granddaughters. It was like a community, not a hospital ward. They cared for the whole family and we were able to celebrate our 46th wedding anniversary whilst I was there.”

“The support has been enormous for John. It was a really stressful time for him, and the whole family, but particularly for John and he was absolutely elated that I was going to be able to go home again.”

“As my strength returned, St Clare prepared for my return home, including arranging for equipment to be installed to help make it easier for me. The transition home was very good, with St Clare Hospice at Home visiting me until my care package started, and the district nurse calling in.”

“To be able to return home, sit watching the birds in the garden, it’s been magical. I was even able to do some more painting, which I love. Last October, I took up an art class and began a series of botanical paintings. After the care I’ve received, I want to give something back to St Clare. So I’ve donated cards featuring some of my paintings to St Clare to raise money, so that other people can receive the phenomenal support that St Clare Hospice provides absolutely free of charge to those that need it.”

“And if I need to go back to St Clare, I won’t be at all afraid.”

– Marilyn

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