Graham, 49, was diagnosed in 2009 and had a Whipple's operation
I was told that I was a priority for a Whipple’s operation. The date was set, about 8 weeks from the initial diagnosis scan. I drove myself to hospital for the operation. (My wife couldn’t face taking me and leaving me there.) I was given a bed and then I had all sorts of visits from different people. All through this I remained happy and relaxed. I don’t know why because this was a major operation and my life depended on it but I was giggling and having fun with the staff - but that’s just the way I am.
The following day, I had the usual checks, , and then I was taken into the anaesthetic room to have my epidural placed in my back, then the “magic milk” into my hand. It was 9.10 am and that was the last I remember until I came around in the recovery room at 6 o’clock pm feeling groggy, and sporting a scar across my stomach containing 35 staples and tubes hanging from everywhere.
I was in the high dependency unit (HDU), wondering what the hell had just happened. I wasn’t in any pain as I had the epidural in my back. I also had a tube coming out of my neck, two tubes which were drains coming out of my stomach, a tube going in my nose for oxygen, a catheter in my private parts, and a couple of vent flows in my hands for pain killers and whatever else. I was fully conscious when I went into HDU, and was greeted by my wife and sister-in-law, who were just as pleased to see me as I was them because I knew that I had made it through the biggest operation I would ever have. I was drifting in and out of consciousness and was totally knackered but I was alive!
The following day I was a little more with it, and the physiotherapist got me out of bed, and sat me in the chair. When my wife came in she had the biggest smile just seeing me perched on the seat. The surgeon said that the initial tumour was in the duodenum and that a secondary was in the pancreas, and that they did the right thing by operating when they did.
That evening I had a blockage in my epidural and the pain was absolutely terrible. They had to call for the doctor to sort me out and I have never experienced pain like it before. But that was the first and last time I had any pain. I was administered pain killers every 4 hours whilst in HDU along with the epidural.
Monday evening they decided to move me to the general ward. I had my epidural taken out and replaced with a morphine syringe to manage any pain myself.
Once I was up I would pace up and down the ward. On the Tuesday they took out my catheter and wow what a relief – I didn’t have to worry about that tube. I was now fully mobile as they took the rest of the tubes out, with the exception of my drain tubes which were being pulled out bit by bit each morning.
The following few days were as normal as it could be, wake up, shower, have a little walk around the ward and then suffer breakfast - my appetite wasn’t great but I did try my best. It was now Thursday and, after the doctors had done their rounds, I was told how pleased they were with my progress and that I could go home the following day. That was a great lift as I was initially told I could be in for up to 14 days. Sadly this was short lived as I was being sick due to acid build up, so I told the doctors on the Friday and they said they would keep me in for another day just to keep an eye on me. I wasn’t being ill, it was just what I think was post-operation gunk from my stomach.
Saturday came and I was told I would be better if I went home, as this would speed recovery. Well, they didn’t have to ask twice and I was on the phone to my wife arranging a lift.
I was discharged with my bag of pills. It was a lovely day, sunny, hot and to top it all I was going home – something I never thought I would see. My wife had arranged a high back orthopaedic chair for me next to the window in the living room so I could nose out the window.
Dealing with diet symptoms
I was averaging about two hours down stairs and then I would go to bed for a rest, then come back down, walk around the living room and kitchen 10 times, have something to eat, watch the telly and then off to bed again. This carried on all through the day and night for weeks. All I could manage to sleep was about 2 hours at a time. I would be up in the early hours walking around the living room then having some food and back to bed.
I was fancying all sorts of food and one particular day I fancied a scone and clotted cream. I loved it, but it had some serious consequences because, from that night, I was up and down to the toilet because everything I ate was going straight through me. I was prescribed Creon tablets for this, to break down the fat.
I was in a state. I was down to 11 stone from 14.5 when I started to become ill, and everything I was eating was running out of me. Eventually the tablets took control and I was starting to keep food in. But I was a fraction of my former self and had no clothes to fit me and no money to buy any as I was laid off, so the district nurse put me in touch with Macmillan who gave me a grant to put towards something to wear. What a God send they were.
Two weeks after I got home from hospital, I was walking down the road with my wife. This was a great feat for me. I set myself a goal to get to the end of the road this week and around the block next and managed to achieve this, albeit slowly.
I started to improve. I kept the attitude that this wasn’t going to beat me and I had to remain positive. I had a family to take care of. I started to put weight back on, albeit a little slower than it came off, but even so it was going on. The tablets had stabilized my bowel movements and I was eating most things without any problem.
The months went by and I continued to feel better. The scar was healing and I was more mobile. The surgeon was happy with my progress and told me that I was to have chemotherapy. This started 6 weeks after surgery, once I was well enough to take it. It was standard practice and was considered like a mop up chemotherapy to kill off any stray cancer cells.