The doctor had told us that we would be referred to an oncologist for chemo, but back home we found ourselves waiting again, with no information, feeling very alone. We were about to complete on our new house together, but pulled out of the sale. Meanwhile, I went into overdrive searching for different treatments. I read about enzyme replacement therapy to help Stu as he was struggling to eat, and rang the support line at the charity Pancreatic Cancer UK. From that moment on, Dianne Dobson, a specialist nurse at the charity, was a total lifesaver. She told me all about the therapy, and answered not just that question but so many others. She helped me again and again.
The GP wouldn’t prescribe me the enzymes, but she found me a pharmacist who would, and he was brilliant. He helped with sleeping tablets as Stu was often awake all night, and morphine for his pain, none of which I could inexplicably get from the GP.
We were fighting with the oncology department to get the chemo started, which we finally realised was to extend life, rather than to cure Stu. After a month, the chemo was decided upon, but after advice from Dianne I checked the planned dosage and realised that it was wrong. In the end, I had to get a Harley Street consultant to write to the oncologist to challenge the treatment plan. It was yet another battle. It can be hard challenging senior doctors, especially when you’re a woman and you feel like you’re alienating them, but I had to speak out.
If Stu had been incorrectly dosed as the oncologist planned, I would have had three months less time with him. By then we had lost faith in the NHS.
By the middle of December 2022, I had been exposed to Covid so I had to spend a week apart from Stu. By the time he got home to me on Christmas Eve, he was down to 8 stone and looked gaunt, but his waist had ballooned to 38 inches. We went to A&E on Christmas Eve and then stayed all day on Christmas Day. Finally, he was admitted to hospital on December 27. He had a rare condition, where fluid builds up in the abdomen. He was too weak for surgery, so a dietitian put him on a fat-free diet and he lost a stone in a week, which was awful.
He had very low blood pressure and was frightened to walk as he got so dizzy. He was in an open ward and was never given help to shower or brush his teeth, so he got thrush in his mouth and all down his throat. He was given a bedpan to use lying down, so he had to go to the toilet with a bedpan jammed into his back. I think they were overstretched in the hospital and because Stu was young he was overlooked.
Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
