John, age 77 - 5 years after Whipples

One friday in spring 2001 I was seeing my GP on a simple matter but took along a urine sample because it had been looking a bit dark. He straight away arranged a blood test and said if I turned yellow to come straight back to see him even if it was saturday! By monday I was a bit yellow and he arranged for me to go to hospital and said I'd better hope it was a gallstone. In hospital I had an ERCP during which a stent was inserted, then an ultrasound scan which confirmed the diagnosis of pancreas cancer, and I was to have a CT scan which I paid £450 for to reduce the waiting time. The tumour was in the head of the pancreas (ampulla) and was only about 1cm in size. The medical specialist said that Chemo or Radiotherapy would have no effect, and that in his view, for surgery I should be about seven years younger. The surgeons took a different view and said that I looked fit enough so that the 30% chance of success would be increased to 50%. At the time I also had an appointment for a knee repair which had to be abandoned.

I took a week to decide on surgery after discussion with family and in the light of the alternative which would give me life expectation in months rather than years with probable bigger stents fitted from time to time.

Admission to hospital was quite quickly achieved. The process started in April 2001 with Laparoscopy, in which three holes are made in the abdomen to insert a camera and air line to inflate the area for a look around, followed a week later by the whipples operation which was said to need two to three weeks in hospital. After surgery I went into intensive care for two days, then back to the ward. All seemed to be going well when I was told I had an infection (MRSA) and was isolated to a side ward and scheduled for a Laparotomy (re-opening and washout) just a week after the whipples. This time the wound was not stitched or stapled, but left to heal naturally from the inside. I had two suction pumps attached to the drains to suck out any bleeding, and altogether about ten various tubes in both arms, four in my neck through a sort of manifold, and a direct feed tube into the stomach. I was four days in the High Dependency Unit, then back to the side ward for the rest of my stay.

Blood tests were taken daily but I developed Oedema and was dubbed 'Michelin Man' which made it difficult to take blood because veins were not then easily found. One day I had several people come to take blood and give up trying!

When I was being weaned off the direct feed and given ordinary food by mouth I was sick at the sight of it or even the menu! A second attempt later was more successful.

Two or three times before being discharged I experienced what seemed to be a heart attack but was said to be a muscle spasm. The wound was slow to heal and eventually I was discharged in july after twelve weeks in hospital, the wound to be tended by a district nurse. By September the wound had not healed and was said to be 'over-granulated' and it was cauterised with silver nitrate which seemed to do the trick.

I have to take Creon10000 with meals or milky drinks, although at first the dietitians wrongly advised me about quantities to take.

I was given a schedule of specimen food items indicating how much fat was in each item and creon to be taken at the rate of 1 per 5gm or 10gm and this meant taking many capsules for one meal. Eventually I ignored their advice and just followed the guidance on the packet which was more successful. Getting the level wrong caused much difficulty in flushing the loo. I also regularly take gavis con and ranitidine.

During one of my early checks with the consultant I was told I had an incisional hernia where the three layers of muscles inside had not properly joined together, so I was given a corset rather than have corrective surgery.

A few months later I had more muscle spasms and it was suggested I use an under-tongue spray as used for angina to abate the effects, but the first and only time I used it I passed right out and ended back in A & E for a check over. The spasms can be excruciatingly painful but fortunately only last a few minutes, which seems long enough at the time. They still occur with varying intensity of pain about 350-400 times a year (but not every day) and the cause has not been identified, although I have had endoscopy to check on oesophagus spasm, checks for heart conditions, and barium Xrays all without finding a cause.

In 2003 I had an attack of rigor which apparently is caused by fluids going 'the wrong way' causing waste matter to go back into the stomach. This apparently can occur according to how the internal bits are reconfigured during surgery (apparently there are many different ways of joining it all back up). These attacks continue to arise about every 6-8 weeks and I keep antibiotics on hand to self-medicate when the attacks arise. The condition is called ascending cholangitis.

Frequently there are feelings of raw, tender, soreness, about the scar area almost as if the surgery had been yesterday, which probably arise from the severed nerves that never rejoined, leaving a 'dead' patch.

At my annual check with the consultant last november I was pronounced clear but reserved an option to go back this year. I currently am seeing a different consultant for high PSA which after biopsy was reported to to be cancer free in a test that was said to be unreliable!

Although I appear to have some baggage from the whipples procedure, the plus side is that I am still here to look after my wife and deal with affairs of (e)state!

A useful web-site is www.scuas.com which gives a lot of information about pancreas cancer and whipples including illustrations and hazards.