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Carer perspective: pancreatic cancer

Helen Madgwick

Geoff was diagnosed with pancreatic cancer in 2019 . After extensive treatment followed by a period of remission, he elected not to have further treatment when it recurred. He died in April 2022. Geoff’s wife and carer Helen was with him during palliative care and is chair of the consumer reference group for the SCANPatient study (pancreatic resectibility project).

It was just palliative care and managing pain [towards the end]. We had home hospice on board and they were wonderful. But early this year it was obvious that what we could do at home wasn't enough. I called the ambulance twice in one day when the pain was unbearable and the second time they came, they said, 'You need to be in hospital'. Geoff was in hospital for about a week before he got a palliative care bed. The medical director estimated he might not have more than a week, but he ended up being there for 37 days. That was so hard and when he became unresponsive for the week before he died, I still went every day. When they rang me to say he’d gone, it was the biggest relief, honestly. I didn’t wish him dead, but I couldn’t have wished for him to keep on living the way he was.

The palliative care nurses were angels on earth. They were just so kind and caring and gentle. I couldn't have wished for better care. I had family and friends bolstering me up all the time, and my lovely neighbours. I always had someone I could turn to when I needed support but, after spending every afternoon at the hospice, by the time I came home and had something to eat I often just needed quiet time to switch off. But I never felt as if I was totally doing it on my own. Even the local chemist was a great backstop, and also the GP.

I was invited to be involved in a pancreatic cancer synoptic reporting research project (SCANPatient). The purpose of the synoptic reporting on CT scans is to obtain standardised reporting from the radiologists. I have always said, never dreaming it would be at this level of involvement, if I could help with raising awareness of pancreatic cancer I would, because the statistics for the disease are not very encouraging and haven't improved very much in years

At first I was very hesitant – what could I contribute? I sought guidance from several knowledgeable sources who all assured me that the doctors and research professors need input from people who have had first-hand experience either as a patient or a as carer. The people working in universities don't come into contact with the patients or their carers and they need input from people who have dealt with the illness.

I wish it had been the standard when Geoff was first diagnosed because you’ve got the comfort of knowing that every aspect of that CT scan has been thoroughly analysed and reported on consistently and comprehensively.

Some of the things that have made an impression on me is how highly regarded Geoff was by so many people. Everybody at his bowl’s club, our friends and neighbours, have said how much they loved and respected him, and although you know your kids love you, I was so overwhelmed with the outpouring of high regard they had for their father.

Neither of us were very effusive. We weren't very demonstrative as such. The last words he said to me was on the day before he became unresponsive. He’d rung me just before lunchtime, and I was at the supermarket. I saw his name come up on my phone and, as he never rang unless he absolutely had to, I thought, this is unusual. He said, 'Are you coming in today?' There was a sense of urgency the way he spoke. I'm thinking all the way there, 'what’s going on?' I went in and I said hello and I sat down and I took hold of his hand. And he just said to me, 'I wanted to tell you how much I love you.' He never said another word. That was his last word.


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