Simon, age 36 with operable ampullary cancer

My name is Simon, and I am 36 years old and I have ampullary cancer.

I first noticed something wrong in Jan 2005. I was living in Australia at the time, and was under considerable stress. I first noticed getting itchy on my arms and belly. This continued for a few months, with my energy levels and appetite dropping. I also noticed small scabs on my arms which refused to heal. I also started getting very pale stools and diarrhoea.

I saw my GP who put it down to stress . By March, I was getting more run down, and my ear lobe became infected, and swelled up with fluid. My urine was also becoming darker and darker. After repeatly presenting myself to casualty , where they drained my ear lobe and put me on anti biotics , my symptoms became steadily worse. I was running my own holiday business, which involved travelling to Fiji for 6 months of the year. So , off I went, to a very small island off Fiji , with no medical care withn 100 miles. I was there for four weeks, with my health deteriating rapidly. I lost over 15 kg, going from 88kg down to 74kg. I also noticed I was becoming jaundiced. At this point I cut my loses and flew back to Perth, Western Australia. I saw my Gp, who straight away refered me for an ultrasound. Here they noticed I had a dilated ampullary duct , so straight away did a CT which confirmed that I had a blocked bie duct. I was admited to Fremantle hospital the next day, where they performed an endoscopy to clear the bloackage and also take scrappings from the ampullary.

My health rapidly improved, and after 3 days was discharged. The scrappings showed nothing , so the general consensus was to see how my health improved, and do further tests after I returned from Fiji in September. After an intitial euphoric mood, I sooned descended into deep clinic depression. I felt at this point I should return home to the UK where all my family live. The depression continued undiagnosed until April 2006, when I had nearly turned suicidal. My general health had been fine over this period, so it was not deemed important to do any follow up test on my bile duct.

After been prescribed anti-depressants and having counseling, my depression lifted, and I was able to look for work in the UK. I relocted to Brighton and started working again in the travel industry and everything seemed to be on the up. Then last September I noticed feeling lethargic, and losing power in my legs. I cycle and windsurf regulary, so it made a big difference.

By mid Oct 2006 I was starting to feel very tired, and then had a bout of what felt like one day flu. Felt fine the next day , but two days later it returned, far worse, with a high temperature. I had also been getting regular head-aches for the previous month, so felt like I had a severe hang-over all the time. Then a week after my first fever I had a major attack of rigors. I had severe pain in my right shoulder, and a temp of over 40C. I was finally admitted into Brighton hospital where the medical staff were great. It was a struggle to get past the reception who assumed I was a drunk, as I was incoherant, white as a ghost and in great pain. Finally, after fours hours in the waiting room ,I was seen and immediately was admitted into the surgical observation ward.

At this point it was assumed I had a problem with my gall bladder. After a few days on anti-biotics, my health improved and I was sent home. At this point I started to itch again, and started to become jaundiced. My health worsened over the next few days, and again I was admitted, and passed from the surgical team to the gastro disease team. After an endosopy that showed a dilated bile duct, but not much else, I was sent home again. The following week(now into mid november) I started feeling worse, with the itching increasing, vomitting, pale greasy stools , and an inibility to keep warm. My urine also darkened at this point. Again I was admitted , but it soon became clear that my medical team where not happy, and they reffered me to UCHL in London.

This took a week for a consultation, but as soon as I met my consultant , Dr Webster, I knew I was in good hands. He immediately admitted me, and the next morning performed an endosocpy where he placed a stent in my bile duct. Over the next few days my medical team expected my bilirubin level in my blood to drop,but instead it rose. I became more itchy, and steadily my condition worsened. By now it was into mid Dec 2006, and I had a second endoscopy to put in a second stent. After this again my bilirubin level increased , much to everyones surprise. At this point they realised I was alleregic to the antibiotics I was on. As soon as I stopped taking this I started to recover, although it took at least a month for the severe itching to subside. I spent most of Christmas and New Year in the bath, as hot water seemed to ease the itching .

Over the next couple of months I slowly recovered, and started to feel more normal, and stronger. I also rapidly put on weight. In February, after more scans my Doctor decided to pass me over to Mr Shankar , my surgeon at UCLH . He decided to operate, as even though at this point my medical team did not think it was likely to be cancer, he wanted to remove my bile duct to stop any future problems.

So, on April 2nd I went into UCLH to have my whipples operation. Arj, my surgeon, told me later he expected an routine op (if you can call a whipples routine) as they were not expecting anything unusual. Upon entry they saw that my pancreas was shot, the result of chronic pancreatitis over the previous year. Considering I had experienced virtually no pain, this was unexpected. The op took 9 hours , but they managed to save a very small part of the pancreas, which was grafted onto my stomach.

Over the next few days I recovered quickly, leaving intensive care after 48 hours, and moving up to the normal ward. By day 3 I was out of bed, and attempting to walk, so it all looked good. Then on day 5 I had severe pain in my left shoulder. In hindsight, this was the start of an internal bleed from the stump of an artery. Over the next 24 hours my condition rapidly worsened, and by Sat morning my oxygen level was dangerously low, my temp very high, and my blood pressure very low. I also had a very distended belly (the result of bleeding into my abdomen).

I was quickly taken down to radiology, where I had an emergency angiogram. Amazingly they were able to put a stent inside my artery to block the stump, and thus stop the bleeding. This was an extremly traumatic experience, something I have still not come to terms with fully. I could actually feel the catheter passing up inside my body till they could locate it on the bleed site. In all it took 4 hours, all the time I was having blood tranfusions to keep me alive.

I spent that night in intensive care. The morphine made me very disoriontated, and I remember thinking I was on a film set, and wondered why I could not just get up out of bed and walk home. The next day I spent in a ct scanner as my medical team inserted a catheter to drain the hematoma. At this point it was about 2L of fluid sitting in my abdomen. Imagine swallowing a 2litre coke bottle whole, and you will start to imagine what it felt like.

Over the next 5 days, I slowly recovered in intensive care, and was finally taken back to the normal ward. Here I stayed for the next 2 weeks, each day feeling stronger. At this point the results came back on my tumor. Unfortunately, and to everyone's surprise it was positve, an ampullary cancer was diagosed. This is a very rare cancer, affecting only about 70 people a year in the Uk. For a 36 year old to get it was unheard of . Trust my luck.

So after another 4 weeks in hospital, I finally left hospital in late May. Back home in Norfolk I started my chemo regime of 5-FU. After two sessions I moved back to Brighton, and after 9 months returned to work. Due to a different health authority, I changed chemo to Xeloda. I am now on session 5, with only 4 weeks to go. When I finish it will mark 1 year from when I first became ill.