My mother was pronounced terminally ill with bowel and liver cancer at the John Radcliffe Hospital in September 2009. This was unexpected and shook my life in the manner a snow globe is shaken by a child wanting to see the pretty effect. I had not anticipated a pretty effect, and for a couple of weeks was absolutely certain such a thing could not be.
Mum was transferred to Sobell House, and my whole perception of Cancer and Palliative Care were to be challenged and transformed. I was introduced to some members of mum’s nursing team, and was told I could see her consultant the following day. As I left that first night I was assured she was comfortable and in the best of hands. I knew that I would be telephoned if anything happened and could visit at any time I chose. I felt happy. I wanted to smile and dance for the first time in weeks! Sobell had begun its magic, and I had learned a most important lesson, that this place was about life not death.
In all our time at Sobell, I was never once spoken down to, ignored or made to feel irrelevant. Everyone was patient with my endless questions about drugs, symptoms, side effects and general worries. The nursing staff were always there to provide a much-needed shoulder and if a spare minute could be found, they would take Mum for a push around the gardens in her wheelchair.
The chaplain was particularly kind in proffering assistance, although this could easily have come to a halt after mum persuaded him to eat some pickled herring I had brought for her. Fortunately he rose to the occasion and the story is now a source of mirth. His presence was often timely, always comforting and usually laced with humour.
The invaluable volunteers also brought banter and kindness. These amazing people gave smiles to both of us, and were always understanding and sympathetic. If I was having a wobble, there would be an opportunity to chat or have a cuppa and get it out of my system. For Mum there was a river of juices and jokes and kindness. Even the housekeeping staff that served her meals, cleaned her room and did general duties soon came to know her likes and dislikes and would jest with her.
I was allowed to help at bath time, a joy that took place in a Jacuzzi bath with many jets of water. We put in plenty of bubble bath to create a lot of foam, which my mother then treated with the exuberance of a two year old. She would play and throw them at all and sundry, laughing all the while. There are facilities for hairdressing there and I borrowed nail kit, this helped ensure appearances were kept up, and all that could be done in the name of dignity was achieved.
I was also able to take my mother out for drives in the car, which meant I was able to take her home so she could sit in her favourite chair and pretend nothing had changed. We also went on a sortie to enjoy stunning autumn leaves on our way to visit friends living nearby.
Another delight was reflexology, which mum had done in the evening, smiling until she was lulled almost to sleep. I too was offered, and accepted the occasional treatment, allowing me to relax and try to de-stress. This holistic approach to patient and relatives allows a full sense of belonging and a continuation of normality, and some much needed “me” time. Mum was always an individual first and I was never sidelined.
Mealtimes saw fresh food from the kitchen each day. Soup was a favourite and in the early days she would often have seconds. Sadly because of her condition Mum soon found she was unable to enjoy all dishes, so the chef would prepare something like fried or scrambled eggs especially for her, as an extra. This way she was able to eat at times when she may have otherwise given up.
We were also provided with a radio/CD player, which was put to good use. At times we would dance, and others sing, sometimes both. It kept spirits up and enhanced all our moods. Sobell also offered Mum music therapy, which I know she loved dearly. She was able to play the piano and sing and it allowed her to express herself in a way she could not in words. Here her emotions could be free in the private sanctuary, skilfully created for that purpose. A place and space especially for her, shared with a man whose sharp insight, empathy and humour would connect with her and help her in many ways.
I have not said much about the medical side of things, but want to praise the myriad attempts and efforts to get things as right as possible. Over five months, my mother was to spend all but six and a half weeks at the hospice. During those weeks, she was at home with me and even during that time, Sobell supported us, partly through the Community Team nurses, who came to our home, as did her consultant. The fact that my mother was home at all, and for Christmas, was a miracle made real by the dogged determination, kindness and understanding of the social worker. Without her tireless efforts we would have missed many magic moments.
When the inevitable happened I had been counselled and comforted from the start. I had noticed things had somehow subtly changed and from the confirmation of my suspicions by our consultant there was nothing but kindness and care. Mum was made comfortable and lacked for nothing. Each stage I witnessed was explained, and each explanation accompanied by a shoulder to cry on. I was able to stay with my mother at night, as well as during the day and given advice as to what was best to do. I was blessed to have her in my arms as she died and again the understanding of those on the ward of my distress helped me through this traumatic time.
Bereavement counselling is offered and is a refuge, a safe place to let out the conflicting feelings battering about after such a long illness and ultimate death. I have felt the security of being understood and accepted during grief. Art therapy, which I began as my mother was readmitted, has allowed me to explore an expression of transition from life to death. Music therapy has opened a new world, where creating songs acts as a legacy and a delight. Amazed by what notes can do, and what people are capable of writing in extreme situations, I can try to use this medium to express emotion and tell stories.
The story of Sobell House is one that spans thirty-five years and is still writing moving chapters. Mine is but a small part of an ongoing whole that sees people as individuals in all their aspects, and looks to the requirements of those terminally ill along with their friends and families. Every facet of care is tended by an expert, creating a competent and secure environment, brimming with love and life. I am privileged to have been treated to the Sobell experience and know my mother could not have been given more to enable her to live to her end in a manner that was dignified and tailored to her needs.