We were all set for a day out at the London Eye, Paul, myself and our 8 year old son Jack. Paul had suffered from ear infections on an off all his life, and on that day he felt he had yet another one brewing. It turned out that Paul had a brain tumour and age 40 he died peacefully in the Hospice with me by his bedside 10 months later. It was not how we thought our life was going to turn out.
Before Paul’s diagnosis, cancer hadn’t run in our family and we had no language to deal with what was happening to us. An MRI showed that there wasn’t one big tumour, the whole of one side of Paul’s brain was a mass of tumours and right from that moment, I knew it was terminal.
As a Head Teacher, Isabel Hospice was familiar to me. We had children in the school that had been supported by the Hospice bereavement team, and I was aware of the benefits of palliative care. I knew it would be holistic and supportive, but Paul was against Hospice involvement. He saw it only as a building where he would die and at 39 he was not ready for that.
We had a home visit from a Hospice Clinical Nurse Specialist, Julia, and I was overwhelmed by the amount of support we could tap in to. Paul eventually agreed to see a Hospice counsellor and she came to our home. Paul as adamant, he wouldn’t be sitting on the sofa for that, they sat at the dining room table. It was a kind of barrier for him to be more formal.
In the following few months we packed as much in as we could as a family. The Willow foundation arranged a weekend safari for us, and while Paul slept for 3-4 hours due to extreme fatigue, Jack and I could listen to the rhinos. We fed the giraffes and made some amazing memories. In fact, when Paul was admitted to the In Patient Unit, we took down the picture of the cat that was in his room, and put up our safari memory picture for him to focus on happier times.
Over the next few months Paul was in an out of hospital. The tumour meant he lost his mobility, his hearing, his short term memory. He was frightened and anxious. His condition deteriorated and he started fitting which meant he ended up in Lister. I knew he was too ill to come home, but he was in a gastro geriatric ward, and that was no place for him. The palliative care team were amazing and managed to secure him a bed in the Hospice.
We when we arrived, a volunteer was there to meet us with a cup of tea and some lunch. We hadn’t slept for days, and they just ‘knew’ what we needed. The room looked out onto the garden and Jack was able to be a little boy there. He could come and go in and out of the room. He could sit on his Daddy’s bed. He could play with the giant toy dinosaur. We as a family felt safe, calm and reassured.
The vast experience of all the doctors, nurses and volunteers meant there was never a time I felt they didn’t know what they were doing. The conversations we had were honest and respectful. It was the most amazing place.
In those last two weeks, I spent some amazing times with my husband Paul. We held hands and we had a cuddle on his bed. I even fell asleep next to him, with his arm around me. Something I never thought we’d do again. The Hospice looked after me, as much as they looked after Paul.
Paul was kind, thoughtful, fit and great dad. Because he was so young and fit, he really fought against the tumour, and that meant is was really distressing at times to see him in pain, fighting it all the way. Without the Hospice it would have been so much worse. They gave him a voice, they supported me and Jack, they let me be his wife, right to the very end, something for which, I’ll be forever grateful.