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John's story (oesophageal cancer)

On December 17 2014 I was formally diagnosed with oesophageal cancer (adenocarcinoma). This narrative is intended to provide a personal perspective of the efforts undertaken by the National Health Service to treat the disease, and the effects it had on me and my family.

I think it’s useful to describe some of the events leading up to this diagnosis.

I should note up front that I’ve never smoked and that I’ve always been a moderate drinker, mainly of wine. Around the middle of 2013, I began to experience excess stomach gas and some acid reflux, and I began to take antacid tablets fairly frequently to combat the symptoms (first big mistake!).

It wasn’t until May 2014 that I went to see my GP about these symptoms. The GP, a junior member of the practice staff, prescribed Gaviscon Advance for stomach gas. The medication helped a little, but was no cure, so in the following October I went to see the GP again, and he prescribed Lansoprazole for severe stomach gas. I also mentioned to him that I had had some difficulty swallowing for a short time. However, the medication immediately relieved the symptoms.

I began experiencing more difficulty in swallowing sandwiches for a short time, so I went to see my GP again in late November because my Google searches suggested that this could be a side effect of taking Lansoprazole. My GP, a more senior member of staff, advised me to stop taking the Lansoprazole and to make an appointment to see him again in a couple of days. During the follow-up consultation, I informed him of my stomach problems and he examined my abdomen, but found nothing abnormal. He prescribed a gastroscopy on an urgent basis and ordered blood tests prior to the procedure.

I underwent the gastroscopy at Leighton Hospital in Crewe on December 4th, when I learned that there was a tumour in my oesophagus and that it was likely malignant. I was also told that a CT scan would be undertaken as soon as possible, followed by a Multidisciplinary Team Meeting with specialists to determine the next course of treatment. I have to admit that I was a little taken aback by the matter-of-fact diagnosis, and I’m not sure if this is necessarily the best way of telling the patient he has cancer.

However, I was fully aware that the outcomes for oesophageal cancer are not terribly good, having been a fan of Christopher Hitchens, the polemicist, and John Thaw, the actor of Inspector Morse fame, who had both succumbed to the disease, and immediately following the gastroscopy I felt as though I’d walked into a brick wall, and I felt really low. However, I was also in the situation that I was taking care of my mother, and so I had to pull myself together to carry on caring for her and to just get on with life. This was the beginning of a long, but very structured, system of treatment.

I also think it’s worth noting that I’d been experiencing a runny nose for several weeks prior to the diagnosis. I’ve mentioned this to a number of medical professionals, but none have thought it at all relevant. However, I can say with some certainty that quite a few oesophageal cancer patients I’ve spoken to have experienced exactly the same thing, and I have to conclude that this is no mere coincidence.

Following the gastroscopy, on December 10 I had a CT scan at Leighton Hospital followed by a meeting on December 17 with Mr David Corless, Consultant Surgeon, and Vicky Woodall, Specialist Nurse. Mr Corless was very professional and explained the situation clearly and outlined a road map for my treatment. Vicky explained her role in the process and provided her contact information, which was very comforting.

Fortunately, the CT scan showed that the tumour had not spread from the oesophagus into other organs, only into several local lymph nodes, so it was judged that I might be a candidate for surgery. To confirm this, I had to undergo a PET scan, an abdominal inspection using keyhole surgery, and an endoscopic ultrasound examination.

The next day, December 18, I had an endoscopic ultrasound at the Royal Stoke University Hospital in Stoke-on-Trent, which confirmed that the tumor was in the T3 stage, but had not infected other organs, just localized lymph nodes.

Vicky Woodall called me the next day to tell me that the CT scan results did not rule out surgery, but that the final decision would be based on the PET scan results.

On December 31 I had the PET scan at the Christie hospital in Manchester.

I had a laparoscopy on January 8 at Leighton Hospital, which involved an overnight stay. The examination confirmed that the cancer had not spread to adjacent tissue or organs and that it had entered only a few immediately adjacent lymph cells.

On January 19 I had a full cardio-pulmonary exercise test at the University Hospitals of North Midlands in Stoke-on-Trent to assess my ability to undergo major surgery.

I began EOX chemotherapy treatment on January 21 at the Macmillan Unit at Leighton Hospital. I had few side effects: a frosty sensation on my lips when drinking cold fluids; ends of fingers sensitive to cold; and slight nausea. However, these side effects disappeared after four or five days.

On February 11 I began my second cycle of EOX chemotherapy treatment at the Macmillan Unit. This time, there were more side effects, including:

  • Cracking of skin on the ends of my fingers
  • Foot swelling
  • Cramp/muscle pain in lower legs
  • Problems focusing my vision
  • Constipation
  • Frequent urination during the night
  • A general feeling of wooziness

 

These additional side effects persisted, however.

My third cycle of EOX chemotherapy treatment took place on March 4 at the Macmillan Unit. The side effects were similar to those experienced following the second cycle, and these likewise persisted.

I should note here that the chemotherapy caused numbness in my fingertips, and I cut my fingers several times in the kitchen when preparing food because I couldn’t properly grip onions when slicing them.

On March 26 I had a CT scan at Leighton Hospital. On April 1 was advised that the CT scan showed that the tumor had decreased slightly in size, that there was no indication of the tumour spreading and that based on this there appeared to be no reason not to perform surgery.

On April 17 I had a PET scan at the Royal Stoke University Hospital in Stoke-on-Trent. A week later I was advised that the PET scan results were fine and that surgery had been scheduled for June 1 at the Royal Stoke University Hospital. At this time I was told that Mr Corless would not be performing the surgery.

I received this news with great relief, not only because there was a glimmer of life at the end of the tunnel, but because after all of this treatment I wanted to get the surgery over and done with.

I underwent the oesophagectomy at the Royal Stoke University Hospital, as scheduled. I fully understood that this is a very complicated and dangerous surgery, and I’d made sure to get all of my affairs in order. I was apparently on the operating table for over 10 hours. I was, however, somewhat disappointed not to have met the surgeon, Mr Beardsmore, before the surgery. This, in my opinion, should be standard procedure.

Following surgery, I spent time in the High Dependency Unit, before going to a standard ward to recover. I met Mr Beardsmore and his team on the wards and was very impressed with his professionalism and his bedside manner. The nursing staff on both wards were very professional and friendly. I have to say that I experienced virtually no pain at all while I was in the hospital, and I was very happy with the standard of overall care in the hospital. I spent two weeks in hospital, and my opinion is that I could have been discharged after about a week.

Following surgery, I was scheduled to undergo more chemotherapy, followed by combined chemotherapy and radiotherapy. On July 29 I underwent my fourth cycle of EOX chemotherapy treatment at the Macmillan Unit at Leighton Hospital, and on August 28 I underwent my fifth cycle of treatment.

On September 16 I underwent the first of 25 radiotherapy treatments, every week day for five weeks, at Royal Stoke. The radiotherapy, while non-intrusive, causes extreme tiredness, and I did an awful lot of napping during the day during this five-week period. The staff in the radiotherapy unit was great – very friendly and very understanding. On September 21 I underwent OX chemotherapy treatment at the Royal Stoke Hospital.

During the radiotherapy treatment, there were a number of times when I became very unsteady on my feet, causing me to collapse with no warning. On two occasions, I broke my foot in the same place, which did nothing for my mobility, particularly since I used to walk everywhere.

On October 20 I underwent the last of the 25 radiotherapy treatments at the Royal Stoke Hospital, which was a great relief. Not only because the treatment had finally been completed, but because the travelling to and from Stoke was very, very tiring. I have to say that the NHS transportation system is in need of an urgent overhaul. It’s not at all convenient and it’s very inefficient. This system was equally as draining as the radiotherapy treatment. However, because I was living by myself and did not have a car, and because none of the neighbours I knew had a car, I was forced to use the system.

I have attended a number of the support group meetings, and I’ve found them to be very useful and informative, for no other reason than you’re able to see people in the flesh who have survived for years, which gives real hope.

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