A person, not a cancer patient - a personal view by Peter Rookes

Dr Peter Rookes had a distinguished career in healthcare, including chairing the working group which first developed a strategy for Birmingham, and serves as Secretary to the Birmingham Council of Faiths. His wife Jean died in December 2016 after battling cancer for two and a half years. Here is his, and her, story.

It was as if my career in palliative medicine was to prepare me for something much closer to home when Jean was diagnosed with ovarian cancer following emergency surgery for bowel obstruction. Because of the nature of her symptoms, the cancer had already metastasised when she was diagnosed, so she was booked for a course of chemo and given a life expectancy of two-three years. This was quite different from my youngest sister who died six weeks after her diagnosis of bone cancer.

Post-operatively, Jean was referred between her surgeon at the Queen Elizabeth Hospital, her gynaecologist at the Women’s Hospital and her oncologist at the City Hospital, where she had three courses of chemotherapy. Our weekly visits to the chemo department, consultant appointments, attendances for scans and blood tests gave us plenty of opportunity to observe and listen to the comments of patients. Almost without exception, the staff were praised for their patience and sensitivity. But there was plenty of criticism of systems, particularly long waits for appointments and having to keep giving the same information to different people. In common with others she was critical of this disjointed approach and wrote on her notes in capital letters – I AM JEAN, A PERSON, NOT A CANCER PATIENT.

Between her attendances for chemo she kept busy, keeping up her regular activities including her patient visiting at the Royal Orthopaedic Hospital, even during her low immunity period when she wore a mask. We continued rambling and having time away in our caravan. Our participation in a Penny Brohn course was most helpful. It was beneficial that participants were at different stages of their cancer journey and able to share their stories. The course gave useful advice on diet, exercise, relaxation, meditation and sleep, and encouraged us to examine our relationships, what we should say to family, our spiritual needs, and expressing our emotions. We were also encouraged to use touch, hugging, massage and aroma therapy. Because of our interfaith work, Jean appreciated the spiritual support she received from many friends of different faiths.

Jean had four hospital admissions, each of approximately a week, to get symptom control. Although she was generally satisfied with the treatment and care she received, she declined a fifth admission as she realised that her life was coming to an end and she didn’t want to risk dying in hospital. As she had come to the point where she couldn’t tolerate any more chemo and surgery would be ineffective, she was transferred to the palliative care team. She was fortunate at getting a place at our local hospice to attend for a day each week. This gave her the opportunity to talk with other people in a similar position to herself, get involved in art and craft activities, speak to staff about her concerns, and spend time with the chaplain.

At home we had moved a bed downstairs for her to relax on during the day, but she still managed to walk, with assistance, up and down the stairs each day. I had put a lot of family photos on the wall of the stair well to encourage her to take her time. We belonged to a Christian meditation group and Jean found it spiritually comforting and relaxing for us to do a meditation each day. Her family visited, from the US as well as the UK. We went to Bournemouth with our rambling group, for a final weekend in October during which, with great determination, she walked 4 miles around Studland Point. By this time her pain levels had increased and she had morphine patches applied. Our GP agreed that I could administer her morphine injections rather than waiting for a district nurse to call. This was a great help as I remember the difficulty when my sister was in a similar situation, and sometimes had to wait an hour or more in severe pain for the nurse to arrive.

It was her 74th birthday on 21 November. She had reached the point where she didn’t want anyone to see her, including her close family. She wanted them to remember her as the fit, healthy, energetic Mum, Sister, Auntie and Granny, she had always been, including being a champion marathon runner. They all phoned and she made what must have been a gargantuan effort to sound cheerful and positive. It was as if she knew that this would be the last time she would speak to them – and it was. After this her decline was more rapid. As her tumour enlarged it was pressing on her diaphragm and she was able to eat less and less. The dietician prescribed various nutritious drinks and soups for her. Frequently it took all day for her to drink one portion which, frustratingly, she vomited back in the evening. As a result she was losing weight, strength and energy.

At the beginning of December we were asked if she would like to be admitted to the hospice to see if her symptoms could be brought under control, to which she said yes. Quite unexpectedly, we received a phone call the following morning offering her a bed, which she accepted. We took a long time packing her clothes and toiletries to take. We came down the stairs together, talking about the family and events in the photos. Before we left the house to go to the hospice I asked her to give me a hug, it was the last hug we had together. Part of both of us believed that she would be home for Christmas but in the back of both our minds, though unspoken, was the knowledge that this was the last time she would see our home.

She was welcomed at the hospice and given intravenous fluids, including her morphine. I managed to get her to sip a cup of milk. Within three days she had reached the point where she could no longer communicate. Our local Methodist minister, who is also chaplain at the hospice, visited and prayed with her during the afternoon before she died. I prayed with her before I left that evening, told her how much I loved her and thanked her for nearly forty wonderful years together, and she died peacefully at 6.00am, five days after she was admitted. She was ready to meet God and was in the place to do so.

In our experience bereavement occurs at least three times during this journey: First, when the diagnosis is initially made with the realisation that there is a reduced life expectancy. In other words, we are denied the period of doing planned things together in our later years. Second, when entering the time when the end of life becomes imminent. The time period between these two phases may be a few weeks, months or years. Third, for the close family and friends, at the time of death. It doesn’t matter how well prepared everyone is for the death, it is still a traumatic event when it occurs.