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Ted Young, known to many as ‘The Busker’, was a much-loved person in Shoreham and Worthing and could often be found delighting audiences with his one-man band performances. When Ted was diagnosed with Multiple Myeloma – a type of cancer which affects bone marrow – St Barnabas were there to support him and his wife, Chrystabell, right through their journey. Chrystabell has kindly shared their story.
I didn’t marry Ted until I was 55 and I’d been single all my life. I’d known him for a long time and I was a big fan of his music, but before he fell in love with me I was content in my life and had quite accepted that I would remain single.
I’d always said that if I ever got married it would be to somebody that I knew and trusted, and Ted was that person. We really were right for each other even though very different people. I believed he was the missing piece in the jigsaw of my life. Even in later years, people used to say to us, “Oh you two, get a room!” and we’d only be sitting there together, but everyone could see how in love we were.
One of Ted’s big dreams was for us to go to New Orleans USA, and we’d just got back from a wonderful trip there when he was diagnosed with Multiple Myeloma in 2015. He’d been having some routine tests for anaemia when they discovered he had bone marrow cancer. Although he didn’t have any symptoms, he was put on a trial of very serious drugs.
But other than that, our lives were virtually unaffected. Ted continued his artwork and his music with only monthly appointments at the hospital to remind him he had a condition. Outwardly he had no symptoms.
Then, in August 2018 Ted went into a relapse state and was hospitalised for three weeks. He was in a lot of pain and for a while he was unable to walk. It was during this time that the phrase ‘life-limiting’ was used to describe his condition and St Barnabas came into our world.
With his usual humour, he said in his broad London accent, “Is this curtains then?!” He was told that the care of St Barnabas would be there for us both, “right through the journey.” This was a particular relief to me because, having become his carer, I was feeling quite overwhelmed.
Over the next two years, the St Barnabas community team visited us regularly at home. Ted didn’t need nursing, but one of the most important things the specialist nurses helped us with was his boxes of heavy-duty medications that I had to administer every day. It was terrifying at first to be in charge of such drugs! There were various side effects too and I was out of my depth trying to make it all work and maintain his quality of life as much as possible. But, when the St Barnabas nurses arrived, the effect their visit had on us both was magical. By the time they left we’d both be feeling much happier and I’d be confident in the task ahead of me.
When someone so precious to you becomes ill and you’re unable to do many of the things that you used to enjoy together, it changes your life completely. I remember one of the nurses asking “What about you Chrystabell, how can we help you?”, and I just burst into tears. They could see that I was struggling and put me in touch with one of the hospice counsellors. Talking to a counsellor helped me to process everything that was happening. I was able to come to terms with how different our life was and, instead of getting angry at the situation, I found new ways of responding and it gave me other coping strategies that made life more manageable.
On 24 March 2020 – the day the country went into lockdown – we were told that Ted’s hospital treatment was no longer working and palliative care was now his only option. The Hospice at Home team then came into our lives and for a short while a state-of-the-art hospital bed was brought into our very limited space. Despite early Covid restrictions making things very complicated and meaning the introduction of social distancing, masks and gloves, the St Barnabas team still came and cared for him at regular times in the day and for a night.
Over the next two weeks, Ted’s condition deteriorated rapidly. I was feeling exhausted and ill from helping care for him at home, so I was thankful when a bed became available at the hospice. The drive there was very strange. The streets were empty and there was a sense of unreality everywhere. But, when I walked into the strangely quiet and empty hospice, I felt an enormous sense of relief.
When one of the nurses recognised Ted from when he sang and entertained in the St Barnabas Day Hospice she said, “This is such a privilege, to be able to give something back to him for all he gave to us.”
I handed the burden of care over to them and, despite the masks and gloves and aprons, despite the distancing and none of the usual physical touch I know I would have received, I felt totally cared for and safe. Even when I stayed overnight I was treated as if I was an honoured guest, and I felt able to sleep knowing he was being fully cared for.
I am so grateful to St Barnabas, not just for their care towards the end of Ted’s life, but all the way through those two years. We were both supported physically, emotionally and spiritually and I was able to be there with my beloved husband as he made his final journey from earth to Heaven on 9 April 2020.