Caroline Shore's Story

My dad was diagnosed with cancer when he was 54 and he passed away when he was 57. It was nine o’clock at night and the consultant and the nurse came into the room and they said ‘Frank, it’s cancer but you’ll have time to get your affairs in order’ and that’s how dad was told of his diagnosis. Those were the words that were used.

He would have been introduced to the palliative consultant in the hospital on his second visit. I suppose when we heard that the palliative consultant was coming we were all very scared and frightened. To us palliative care meant end of life, end of the road, that there was no hope. And initially, when we were told that they were going to visit, they were identified as the pain management team, and because dad was at the very early stages he found that an easier name to accept than the word palliative care.

The home care team was introduced to dad probably about a year into his illness, when his pain started to become a lot worse. And they came out and visited dad in the home and this was great because there were times that dad didn’t feel able and well enough to travel and they came to him at home, which was great. Dad liked to see them coming because he could share his worries and concerns and ask them questions and my mum liked to see them coming because she felt that she wasn’t on her own. Towards the end of dad’s life he was back in hospital and it was a weekend and it was very hard to get any palliative consultants to see dad but one did come, thankfully. He was very good, he sat down beside dad on the bed and he leaned in to hear him because dad’s voice was very quiet at that stage, and he asked dad about his pain, he asked him about his signs and symptoms that he was experiencing. He asked him what he wanted to happen and what he needed to happen and he also asked us as dad’s family what we wanted to happen next. So it was nice to feel included in that process as well. At times we were listened to and at other times we weren’t.

A few days before dad passed away he started to get sick, he started to vomit and throughout his illness he had been nauseated but actual vomiting was a new sign and a new symptom and it started a few days before he passed away and he got very anxious about it, and he got frightened by it. And I was with him one day when it started and I said I’ll get the nurse and I went up and asked for the nurse and she came down and I was very familiar with a lot of the nurses being there and I wasn’t familiar with her so I started maybe just to explain the deterioration in dad and that this had been a new sign as such, a new symptom that he had to endure. And she put up her hand and she said, ‘I know all about your father’ and she just turned on her heel and walked away. And my dad looked up from the sink where he was getting sick and he said, ‘you know Caroline, these people who say they know everything, they rarely do’.

My dad would have liked to pass away at home and I know that’s the wish of a lot of people. So given that a lot of people do end up passing away in hospital, I think it would be very beneficial to have dedicated palliative care wards in hospitals for patients and their families.