John, Diagnosed with pancreatic cancer in 1994

JohnI was a maintenance engineer in a local factory working 6/7 days a week, often 12 hours a day and not surprisingly had suffered from indigestion for quite some time but put it down to the long and irregular hours I was working. One Friday evening my stomach did not feel quite right and it was no better on Saturday morning. Quite unlike me, I went to see my GP on the Monday morning. He asked if I felt liverish, what ever that is, but he signed me off for a couple of weeks and said he would refer me to a specialist at the local hospital. I went down hill very quickly. On Friday evening the emergency call out doctor sent me to the local hospital as an emergency admission.

The hospital treated me for gallstones for five weeks even though neither X-rays nor ultrasound scans showed any sign of them. I was then told that I had to go to the other local hospital for some tests. I could not walk or stand by this time because I had virtually stopped eating and drinking. I was also an amazing shade of orange.

Despite my lack of mobility the hospital could not find me any transport so my wife had to find a wheelchair and get me to our car and drive me there and find a wheelchair to take me in. An endoscopy was performed the next day. When I came round that evening my wife and I asked what the result was. A new doctor came to see us and said he was taking over from the other one as he could make nothing of me.

This was Thursday evening. He said, “ Let me see, its Thursday, a week tomorrow I am on holiday for a week. I will guarantee you a CT scan and see you before I go.”  I had the scan on Wednesday and was wheeled in to see him on Friday. “Ahh, John, he said, “good news and bad news. We now know what is wrong with you, you have a tumour on your pancreas, it is at least the size of a grapefruit, it could be the size of a football, I am sorry, there is nothing I can do for you.”

He admitted me back into the hospital on the spot and came past about an hour and a half later and cheerily said, “ Right, I am off for a week. if you are still here when I get back I will see what I can do.” And he left. I was determined to live for the next seven days, and did. “Right.” Says he on the Monday morning, “I want you in the other hospital by Wednesday morning.” No transport again. I was in a poor way by then – I was eating about a small fish finger of food a day and a glass of water.

Back to wheelchairs and the car again (I do not make this up). On the Wednesday he fitted a stent in my bile duct as it would seem that the growth was squashing it flat. Thursday morning a lady doctor came round and wanted to know why I was there. When I explained she told me to go home, “we need the bed.” The hospital had to ring my disbelieving wife to bring in some clothes and take me home. Fortunately I had been under Macmillan care when not in hospital and they took over and reserved a bed in the hospice for when I needed it. Fortunately the stent did its thing and the bile began to flow. Gradually I began to eat, not a lot, but more than I had been. At the same time as I ate my strength started to come back. After some weeks I could manage to walk round the block slowly. Not far but far enough.

Out of the blue I got a phone call from the consultant’s secretary asking me to ring and get an appointment with the Middlesex Hospital in London. When I got there I was seen by a smallish, slim doctor who looked at the notes and examined me. Go home and get plenty of fresh air and exercise and we will be in touch. I thought that’s it I will be dead by the time they do, but no. Two weeks later I got a phone call – could I come in on Sunday. Not doing much else so off I went. I was in for two weeks while CT scans, ultra sound scans and X-rays etc were taken. The consultant came round and saw me and told me he thought he could help me, go home and do the fresh air bit again, groan ..

What I did know is that I was under the best man for the job in the country – Professor Chris Russell and his team. Two weeks later I got a phone call to go back in. Two more weeks of tests and Professor Russell came to see me. “Tomorrow you are in theatre” he said, “we are going to remove your tumour.”

Eight hours in theatre. Post op, days dragged in to weeks and those in to months. I have to say at this point that one of the biggest sources of help and encouragement was his nursing sister Belinda These. She would be on ward at six in the morning and ten eleven o’clock at night, helping, coercing and encouraging the patients. I do not know when she slept.

By autumn time I was judged fit enough to go home which I did. I was back to eating an almost normal amount of food and told to get the fresh air and exercise again.

I was signed off ten years later.

Side effects? Well I developed type 2 diabetes a few years after the op. I am currently on tablets for it and trying to balance the exercise against the threat of insulin jabs. About five years ago I was taken ill quite quickly on a Saturday. An ambulance ride to A and E. They diagnosed an abscess on my liver. Huge great antibiotic pills and a few emergencies plus a very rough time. The hospital finally got it under control. I was then sent by ambulance back to what was now the University College Hospital. Unfortunately Mr Russell had retired but after a lot of scans and x-rays I was told that my left Hepatic duct was restricted! Blocked by scar tissue and that my left portal vein was badly thrombosed. And that means? I was told; Oh the left side of your liver you will probably die of but you can live ok on the other half. It’s all right for him it’s not his liver.

Early this year I went to see my new GP with a minor tummy complaint He took one look at my abdomen and said, quite taken aback,  “you have a large hernia there” which I told him I knew. It has been there for the last seventeen years. The original surgeon knew it was there and advised against having it repaired. Surgery has improved since then he says. I was packed off post haste to the Benenden Hospital. The doctor there said there are three options open to you. One, open surgery,(which he was not keen on). Two, keyhole surgery, which he was even less keen on, or leave it but it could strangulate and kill you at any time. A cheerful soul. Never mind he sent me for a CT scan and told me to come back. I did so and saw someone else who said the scan did indeed show a large hernia which he was not keen on doing at that hospital; no care facilities. All he did say was the more he heard about my medical history the less he wanted to operate. He recommended that I was once again referred back to the UCH where I saw a very nice consultant. He said yes I did have a large hernia but it did not seem to pose any immediate threat and if could live with it I should try and do so. If it gave any trouble he would be prepared to look at it again.

Well I have had it for seventeen years without any great problems so that is the end of the story for now, fingers crossed.

John, December 2011