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I visited my GP in late March 2011 with a stomach upset that wouldn’t go away. I had a gastroscopy within a week. The GP thought I had stomach ulcer. The results were ‘inconclusive’. Another gastroscopy and a CT scan were done and I saw a consultant within 10 days of these where I was told I had a malignant incurable, inoperable neuroendocrine tumour affecting my pancreas. I then had an appointment with an oncologist who was hopeful that chemotherapy would work. Doing research (scary!), I discovered that Southampton Hospital has a cancer tissue bank for research. I emailed asking how I could give them my tumour when I died. (I discovered later that my email was sent on to the consultant who is particularly interested in my sort of tumour.) I had a phone call from the Upper GI Nurse Specialist telling me that a surgeon in Southampton thought he could operate. I was then sent for an Octreotide scan at Poole, which involves three visits on three consecutive days. On my first visit to Southampton outpatients I saw the surgeon’s assistant and he told me there was a 20% chance I would die on the table. I then saw Mr Pearce who told me what he was proposing to do. He was very open about the risks involved, both operative and post operative. The post operative risks sounded particularly nasty.
My choices were:
Chemotherapy for 3 months. If it didn’t work the tumour would have grown so much that it would really be inoperable.
‘Extreme surgery’ – removal of pancreas, spleen and stomach and major replumbing. There was a possibility that they would need to use part of one of my jugular veins (we have more than one, I learned).
I felt between a rock and a hard place.
In July 2011 I was admitted to Southampton General Hospital where they marked my legs up (with black permanent marker, which took ages to get off!) in case they needed the veins. The operation, which went smoothly, took 12.5 hours. They removed a tumour weighing 5kg, measuring 22cm. I then spent one day in intensive care and two days in high dependency, where the physio got me up and walking. I was in SGH for 2 weeks and followed this with a week in a private hospital because the surgeon and my family were concerned about my being discharged before I was really ready to go home. For nearly 2 weeks I lived on intravenous food and then a pureed diet (exciting! ), then a soft diet for a while before returning to a ‘normal diet’. In SGH my diabetes was managed by the nursing team, but when I went into the private hospital I was able to start managing my diabetes myself with support and encouragement from the nurses. I had my first hypo in the private hospital – but they helped me deal with it. My lack of stomach means that I have to eat every couple of hours, which makes my diabetes difficult to control. They started trying to treat me as a 3 meals a day diabetic which I am not and never will be. I am now 2 weeks into using an insulin pump, which means I feel slightly less like a pin cushion. Creon and Immodium are features of my life! I am now 11 months post op and feel a million times better than I did 6 months ago and life is definitely worth living.
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