Hi. My husband, Colin, was diagnosed with Pancreatic Cancer in December 2021, 15 months after he first experienced symptoms.
At first the symptoms were vague, general discomfort under his ribs and a feeling like he had indigestion. He saw a GP in November 2020 and was given an appointment at hospital in Taunton for a gastroscopy. This indicated that he had inflammation in the lining of his stomach (gastritis) and he was put on Omeprazole. When after a few weeks this was found to be making no difference to the discomfort, the dose was doubled and a few weeks after that the medication was changed as he was still uncomfortable. By this stage he felt he couldn't eat anything rich so his diet became completely bland. The medication he was given made absolutely no difference.
In September 2021, one year after first experiencing symptoms, we had a holiday on the Isles of Scilly with friends. At this stage he was also starting to become fairly fatigued although he still enjoyed the walks we had. When we ate out, he was finding it increasingly difficult to choose something from the menu to suit his now problematic issues with food. A few weeks after returning home from holiday he noticed that he had started to lose weight. He went back to the doctor who, on being told that there was now an issue with weight loss, gave him an appointment with the nurse to take bloods. These came back clear. An ultrasound appointment was made, followed a short while later by another gastroscopy. All clear, no sign of anything 'nasty'. As my husband was still losing weight, a further appointment was made for him to have a CT scan. 10 days later we got the news from the Upper GI consultant that he had Pancreatic Cancer with mets to the lung and retroperitoneal lymph nodes. By this stage, we had known that whatever the problem was, it wasn't going to be good news. He then was given an appointment with the Oncologist at the hospital and chemo was discussed. 12 rounds of Folfirinox with an average life expectancy of 13 months. He gave it a try. After the first infusion in January this year, he felt so ill and experienced severe nausea. After a whole lot of soul searching, he/we decided there would be no more chemo, and to have a better quality of life rather than perhaps more time but feeling so much more ill.
At this stage, with the hospital no longer in the picture, he was put in the hands of a local hospice with the GP practice in the background. This happened to be an extremely good move. A medication regime was put in place. Pills for sickness, pain, indigestion, you name it, he had it. We were given Just in Case meds should district nurses need to be called, as indeed they were, on many occasions. He had 2 three week stays in the hospice to fine tune the treatment which by now included counselling, the use of a psychologist and also complementary therapy. This last was also offered to me, completely free of charge. By now he had a syringe driver for the morphine, and a couple of other drugs in another driver.
He came out of the hospice on 2 August with a care package in place. A hospital bed was delivered and carers (who were lovely) came in morning and evening. Since the middle of June he'd been having bowel spasms which steadily became worse. From now on, anything he ate would cause him a lot of pain. He was now extremely thin and getting increasingly weak. The carers were increased to 3 per day and eventually 4. The last 4 nights of his life we had a night carer too. Throughout the last few weeks of Colin's life, his and my children were taking it in turns to stay. I slept in the bottom bunk in his room. If he needed me in the night, I gave him a bell to ring in case I didn't hear him call out. His voice was sometimes impossible to hear by this stage. He had his last morsel of food, a jelly cube, 5 days before he died.
He started sleeping more and more and the day before he passed away he hardly moved. He was still wanting water and we moistened his mouth with swabs His breathing was now in the Cheyne Stokes pattern. In the early hours of 5 September he left us. At the time his son and daughter were with me, my own 2 daughters having had to return home. Thankfully his last few hours were peaceful. It had been the worst thing in the world to experience what he had gone through. It had been nearly 9 months since diagnosis.
5 weeks later, it all seems surreal. Did that really happen? All the equipment has been removed, the bedroom we were in has been returned to how it was before....and I've lost my husband, my best friend, my soul mate. How can this be? I know it's going to take a long time, possibly years maybe, to find the 'new' me. Will I move closer to my girls? Will I want to move out of the house where everywhere I look, I see him? Who knows. I don't. I do know that I have the most wonderful support from my/our children, and friends and neighbours have been incredible.
I don't know if anyone will read this. If anyone does, I hope it might help with what they're going through and to know that they're not alone.
Jane
