We provide Hospice care & support to patients and their loved ones living in Kent and East Sussex. Discover how we can help you.
“Being with my husband Peter at the end of his life meant everything to me. ‘Don’t worry, you will be with him’ were the were the most reassuring words I ever heard.
We were unbelievably close. Peter and I were together for 32 years. Peter had children from his previous marriage, but we never had children together, so were very entwined.
We met in 1989, after being introduced by mutual friends. We married in Walthamstow in 1991 and lived there for a few years before we moved to Tunbridge Wells.
Peter was a civil servant in central government, but he was a very creative man and wanted to write. He entered competitions and wrote every day of his life. I’ve had many different jobs, including working as a nanny, I worked at the British Museum and later, as a teaching assistant in a local primary school.
After Peter retired we’d go for good walk, or get on the train and go to Sevenoaks, or walk around Knowle, or go to a nice bookshop. Sometimes we’d go to the V&A.
Peter was diagnosed with leiomyosarcoma, a rare soft tissue cancer, six years ago at The Royal Marsden Hospital in Chelsea. Of course, it was a shock. He told me: ‘Chuck, I give myself four years.’
The tumour was removed but they explained that doing so may disturb the vascular system which could cause the cancer to spread. And over time we discovered it had spread to his vital organs. It was so difficult because during the pandemic I wasn’t allowed to go in with him to his appointments at the hospital which of course added to the anxiety.
We were aware of Hospice in the Weald as a nice lady had come to see us initially and told about the range of services and support, and they stayed in touch with regular phone calls. When we had talked about what might lie ahead Peter did envisage being in a Hospice and having palliative care. But at the time he was still active, and we were able to continue to go out together and our see friends.
Peter was put on specialist treatment as part of a drug trial at the Marsden. However, in early September, Peter became quiet. We and were out with friends one day, and he wasn’t himself, saying things out of context. By that evening I was concerned as he wasn’t terribly coherent. He ended up being taken to hospital, unconscious on a stretcher, and after scans, the registrar said anybody who needed to say goodbye should come.
It all happened so suddenly. It was during the pandemic and I was worried I would not be able to be with him all the time. I don’t drive and wondered ‘how would I get to him’?
But thankfully staff from Hospice in the Weald came to me and talked about what might happen next. I knew of the Hospice in Pembury, but they told me about the Cottage Hospice in Five Ashes, and said ‘don’t worry, you will be allowed to stay with him’.
A lovely paramedic took us in an ambulance and I said: ‘Peter we are on the night train to Nice’, and we pulled up to this amazing building with beautiful wild gardens. I thought it looked like the most wonderful holiday location, I told Peter: ‘We are going to a 4-star hotel.’
We were in the Maple room. There were the loveliest kindest nurses, they were so reassuring. They got him straight into a bed and once he was settled, gave me a tour of the building. I thought ‘can’t afford all of this’? I didn’t know it was all free! And then they showed me the lovely kitchen, where you help yourself to food and drink. There were individual meals for me to heat up.
It made such a difference to have all of this, so I could just focus on being with Peter.
It was very comfortable, and we were able to lay beside each other, but I didn’t really sleep. I only left him to wash and sat on the sofa.
Being at Cottage Hospice meant friends could come to visit. We have a small house and there wouldn’t have been the room. Peter’s children came and his brothers and sisters. They were able to have cups of tea and biscuits from the kitchen there. It was invaluable to be able to be there, at Peter’s side, and have people come. They were all made to feel so welcome by the staff.
The lovely nurses helped me to wash and care for Peter, I played our favourite jazz and would hold his hands. One evening, musician friends of ours were taking part in a concert in Lewes, lots of French songs, and they were kind enough to dedicate some of them to Peter and me. As they performed, I was with Peter at Cottage Hospice where he died.
It’s been so very hard because we haven’t said goodbye. I never exchanged a sensible word with him after that day in September. We were very entwined. I could say anything to him. He would point out an article in the Guardian, and we’d talk about things. I feel I have lost half of myself physically and mentally. But I have accessed some of the support available for relatives from the Hospice since Peter died.
It’s also lovely to know that I can go back to Cottage Hospice to visit informally. I recently returned and found it very reassuring to walk through the door again and to gently touch the panel of Maple door, the room we were in.
Knowing what I do now, I would say to others ‘don’t be afraid of the word ‘hospice’’. I didn’t myself understand just how much they can offer, but It’s so much more than a place where people go to die. The Hospice is very much there for patients when you are alive, and also for their family and loved ones too, who can benefit and tap into the resources.
It really felt as though the care from the Hospice not only wrapped around Peter but the ripples have gone out and the arms are there to support me too.”
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