At the weekend Jayne and I went across to deepest Surrey for the launch event of a new charity. This is not something we routinely do, but this one has a special significance for us. The charity is called Progress, to quote its website:

“The PROGRESS charity was established with the specific purpose of supporting people diagnosed with oesophageal-gastric cancers, and to improve the public’s understanding and knowledge of symptoms.“

The charity was started up by the people who treated me at Guildford hospital, and the launch was held at the Gate Street Barn in Bramley, which I had never heard of. I knew Bramley, of course. We pass through it on the way to Guildford. But this barn is on an estate at the end of a tiny one-lane road just outside the village. It is mainly a wedding venue and I imagine it would be brilliant for that. Jayne was very taken with the family of cows in the adjoining field, and made friends with a group of piglets in their pens next to the overflow car park, but she is a sucker for any sort of animal. I think the venue provided the facilities free of charge, but I might be wrong.

It is very early days yet, but I have a lot of confidence in this venture. Of the four medical professional trustees, three were involved in my own treatment and apart from being very good at the medical side, you could tell that they really believe in what they are doing. The fact that they are all still together on the team 6 years after my own stay there is a good sign.

The whole thing was quite informal. They took the opportunity to get loads of photos for their website, held a raffle (of course), passed around trays of delicious snacks, and gave a series of short presentations about the charity and an update on recent and forthcoming improvements to care, treatment and diagnosis.

That might not sound too exciting, but some of the stuff that is going on is absolutely mind-blowing. There are a couple of new developments in diagnosis, one of which more or less a breathalyser, which seems so much more comfortable than the endoscope that I had.

Surgery has been improving a lot too. The last time I saw my surgeon, when I got my five-year final appointment, he told me that he had been doing more robot-assisted surgery, and we got some more details of that. Basically, the 12-hour operation I had is now down to more like 8 hours. And instead of the two huge scars with 28 staples in each, you just get half a dozen small scars. Because it is all keyhole surgery they don’t need to break several ribs and collapse a lung to get to where they need to go, which is what I had. Guildford is becoming a a bit of a centre of excellence for this sort of surgery these days, apparently.

Apart from that, they have been building exact copies of individual cancer cells, to help develop individual chemotherapy tailored to the specific DNA of a patient; another area where Guildford have been taking the lead somewhat.

It is all very exciting, though hopefully nothing that will impact me directly.

One thing that made the event useful, especially to Jayne, was talking to other people who have been through the same thing as we have. I say we, because although I had the cancer it was Jayne who was possibly affected more. She was travelling across to Guildford nearly every day for a month, and stressing about me. I was drugged up to the eyeballs half the time and deliberately trying not to be stressed. One lady we talked to had her treatment and operation ten years ago, and another only had her operation in the last year. She had the robot-assisted surgery and it was interesting to compare experiences. She said that she was only in hospital for a week, and it would have been six days except she had to get training for the food pump thing before going home. I was in there for a month, with a couple of weeks of that being in ICU.

Actually that is not strictly true. I was in for two weeks, but then had to go back after two days because of complications leading to pneumonia, which saw me back in ICU for a week, then a week on the ward. Even so, it was a great example of the improvement in treatment even in the last few years.

I will be interested to see what happens with this charity. I know they are looking at some practical things, but even the awareness-raising could make a big difference. If I knew the warning signs better I could have got diagnosed a lot earlier and needed less aggressive and invasive treatment. As it is I think I was very borderline as the cancer had spread to within millimetres of the trachea which would have made it untreatable. I do know that I would have died in 2018 without intervention, so I have had an extra seven years already, and they have been among the best seven years of my life.

They did refer to oesophageal cancer as being one of the less well-known cancers, and less common, so it gets less awareness. That is surprising as it is responsible for the deaths of Chas Hodges, David Lean, Jet Harris, Walter Becker, John Thaw, Carl Perkins, Jonathan Demme, and Ed Sullivan, and quite a few other prominent people, but if anybody can raise its profile then I think the team from Guildford can, and I look forward to seeing that happen.