I was diagnosed on the 21st December 1994. I had been experiencing severe chest pains and had wondered if I was having a heart attack. Unbelievably, I ignored it at first, thinking it was just one of those things. After the second severe episode, it dawned on me that both times it had happened just after eating. I was very fortunate in that my GP sent me quickly for an endoscopy. I have since heard of many patients' diagnoses being fatally delayed at this stage. After the endoscopy there was talk of biopsies. I had already begun to suspect something serious because of the severity of the pain. I now know that is is not typical, and that I was fortunate to have this symptom. Usually, the first thing people notice is that they cannot eat properly - the food won’t go down. Oesophageal cancer tends to be silent, and sometimes it is discovered too late.

They gave me two follow up appointments, for four days later, both on the same day. I was to have Barium meal X-rays in the morning, then to see the Gastroenterologist in the afternoon. In the event, I also had a CAT scan. They had suggested I could bring someone with me. I had taken the hint and my husband was with me when they gave us the bad news. The gastroenterologist drew a diagram for me, as I had no idea whereabouts the tumour was. He used the diagram to explain to me how the surgery might be done if it were possible to have the surgery. At this stage we didn't know.

As it was Christmas, I had to wait until the day after Boxing Day to find out whether or not my tumour would be operable. If not, I would definitely have to put my affairs in order, (which I did anyway).

By now, I was having real difficulty in eating, throwing food back unchanged and often making this happen, to relieve the pain. I went into hospital the week after Christmas. All the other people on the ward were there for heart surgery, and I felt that I was the odd one out. The surgeon said yes it was operable but asked if I would like to take part in a clinical trial involving pre-op chemotherapy. I said yes please.

I had 100 hours continuous chemotherapy (Cisplatin and 5FU) from 17th to 21st January as an in-patient, followed by a two week rest at home, then a further 100 hours from 8th to 13th Feb. Another rest and I then had the surgery on the 3rd March. The day before my surgery, two men came into the ward from the local heart support group. One came to talk to me, and when I said I wasn’t having heart treatment, he asked what I was doing there! There were no oesophageal support people visiting, and I actually thought that they must have all died! By then I had discovered that it has one of the lowest survival rates of all cancers.

The surgery involved removing my oesophagus, and using the stomach to form a new oesophagus. This means that my 'stomach' is now only a few inches from my mouth! The only thing that keeps stomach contents from coming back is gravity, so I cannot bend or lie down after eating. I have my last meal about four hours before going to bed at night. Acid reflux is obviously a problem, and I am permanently on Proton Pump Inhibitors to keep acid production low. Oddly I didn’t suffer the acid problem until about a year after surgery, when I began to eat better and put some weight back on. Oesophageal people are rarely overweight! Most people never fully regain their former weight, but I did eventually.

After the surgery I was in intensive care for about 24 hours (I'm not sure exactly as I don't remember much – I was 'out of it'), then I was on the high dependency ward for a week, then on the normal ward for a few days, before going home.

Two months later, we went on holiday to France. We stayed in a farmhouse, self catering. By this time I could eat quite a few things, but in very small quantities. Up until then, I had been completely unable to eat bread, but I discovered that French bread was possible! I still could not manage cake. I had also developed some kind of phobia about potatoes, beef and sausages. It was presumably because of sickness during chemo, although I still do not eat beef or sausages. It was a couple of years before I ate pastry! Things just improved gradually over the next few years. I kept trying to eat things I previously couldn't, just to see if the situation had changed, and this policy paid off handsomely. I kept discovering that I could eat things that had been 'out of bounds' to me.

A few months after surgery, I began to have problems once again with food sticking, and suspected the worst. I remember walking through a shopping mall weeping like an idiot, behind my sunspecs. However, I had been given some contact telephone numbers of the Humberside Oesophageal Support Group. I rang Derek, who told me that it is often necessary to have a 'stretch'. That is to have the join dilated as scar tissue grows and partially blocks it. All the same, I was worried until after the dilatation. It turned out that it was indeed scar tissue and I was able to eat better again. After that I joined the group and have been with them ever since.

I had another of these dilatations in September 2004, when I was investigated for an increase in acid problems. The acid problems were due to another cause. I hadn't realised that I needed a 'stretch', but I can eat a little more easily now. I know some people who need these 'stretches' regularly.

I can eat just about anything I want to now, although I am careful not to eat too large a meal. I must chew everything very well, and this means that I can be slow, especially with foods that require much chewing. Quality of life is really good, and most people are completely unaware that I have any disadvantages at all. I have an electric adjustable bed to enable me to sleep on an incline. I use wedge shaped cushions when away from home, and I have an inflatable one of these, which is easy to pack. These are to prevent acid reflux.

I am thankful that I had such a brilliant team of people to help me, especially such a highly skilled thoracic surgeon. I was also fortunate in that there was a local support group. There were only two groups in the UK at the time of my cancer, the other being in Birmingham. There are still great swathes of the country, particularly in the south, where there is no local support for this cancer. One man is attempting to put people in touch with one another in the south of England via the telephone, and I wish him every success! The Birmingham group has now become the national group, and is forming new branches in other places, so I hope that soon, everyone with oesophageal cancer will have the advantage that I had a local support group.