It had taken months to earn their trust. I had to show a willingness to listen. To demonstrate flexibility in shared decision-making. Each clinic visit involved negotiations. I thought I could make them more comfortable with my medications. They did not want to try my medications. I pushed, and they pushed back. I pulled, and they pulled away. I made lots of suggestions, but most of them were shot down. The interactions were always polite, but it was difficult to engage.
I was sure the treatments were making them feel worse, but they would’ve done anything to live longer, no matter what the personal cost. 12 cycles of chemotherapy meant eight months of being imprisoned mostly at home. Unable to venture far from the toilet because of the almost constant diarrhoea. Always accompanied by crampy abdominal pain, day and night. Long days and longer, lonely nights. There was no way to rest properly apart from the few days between cycles when they’d feel almost normal again. Then it was time to start the next cycle.
They had planned a trip with their family. They wanted the children to travel with them to far-off lands. They wanted to create a memory of an exciting family trip. The journey was booked for six months. I was worried about our patient living through the next four months let alone six months. I talked about smaller trips closer to home. The children just want to spend time with their parents. It doesn’t have to be fancy. Short day trips would be just as memorable. The children missed their parent’s cooking. Their other parent didn’t cook as well despite their best efforts. The kids longed for a taste of normality.Continue reading