I was first misdiagnosed at a private hospital early in January 2016. I had a blood transfusion and was discharged with a duodenal ulcer that had bled so they thought.
A few weeks later after having black stools again. I packed a small case and walked myself into A&E at an NHS hospital. They admitted me immediately but then about 6 days after that I was told I had pancreatic cancer and they were transferring me to the Hammersmith hospital to a Professor Long Jaio who is an expert in pancreas and liver problems. I think I cried all the way there and then the Professor told me I did not have pancreatic cancer but a GIST on the duodenum which was a complex place, was fully resectable but would mean a major operation called the Whipple procedure.
A few days later he started operating then sewed me up and when I woke he told me that the GIST was very large and had wrapped itself round a kidney and he could not justify taking a healthy kidney. I cried again. He told me that I would have to take imatinib to hopefully shrink it. I was discharged and then got sepsis which really made me ill and was admitted again.
After taking imatinib for 9 months, my GIST shrank by 54%. I went in to-hospital early Jan2017 and had the GIST removed. He wasn’t joking when he said it was a major operation! However he did save my kidney but I had the head of the pancreas removed, duodenum, gallbladder some bile ducts and a little stomach.
I was discharged after 17 days and I honestly thought I would never recover fully. 18 months on I am I here to tell the tale. I have 6 monthly scans at the Royal Marsden, I go to Yoga and join a group for the local health walks. I am really feeling well.
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