'I visualised cancer as an ocean reef...'

June 2019: I’m sitting in my favourite chair, three months after a massive operation, just popped an Oxycontin – I’d been looking forward to it for hours (since the last one) and my wife asks me a question. ‘Give me a minute,’ I say, ‘I’m just having a blissful moment.’ Our next daily walk was down the road to return my stash of Sackler’s finest to the chemist! It wasn’t my first brush with the mind-bending joy of post cancer painkillers (but it was my last).

The drugs made me hallucinate

I was diagnosed with Oesophageal cancer in 2018, had chemotherapy for four months, then a 12-hour long esophagectomy operation to remove the cancer, part of the stomach and any offending lymph nodes. I then spent three weeks in intensive care where I got a little trigger happy with the Fentanyl. One day when my family were visiting, I had tubes snaking out of every relevant orifice – removing waste and delivering fluids, nutrition and drugs – and I’m not sure what the trigger was (maybe I thought I was an astronaut) but I became convinced my friend Deborah was in peril in the International Space Station and somehow I had to get to her so I started ripping out the tubes and trying to escape. Thankfully the nurses got to me before I could do too much damage. Still, at least there was little or no pain.

And those nurses who sprang into action were, along with the surgeon who treated me (more on him later), my absolute heroes. My overwhelming memory of my time in intensive care and, afterwards, on the ward, is being surrounded by gentleness and incredible kindness.

I ate a LOT of jelly

Post chemotherapy and surgery (and being unable to eat as a side effect of the disease) I’d lost a lot of muscle, and I was determined to get back my strength so diligently worked with the physiotherapist and walked the wards as much as I could. At this stage post-op food was delivered via a feeding tube until I eventually started on broth. Broth followed by jelly. Lots of jelly. Plus, some foul flavoured nutrition drinks. All pretty grim but at least I reached my target weight. The cancer diet plan really works but I’d recommend trying other diet programmes first!

Sleeping with the machine

And then, of course, it was time to leave hospital and get home. I was only home for three days when my lung collapsed, so I went straight back in again for ten days so they could slowly inflate it. More broth. More jelly. Then I was sent back home again with my nutrition drinks and pain killers. One of the consequences of losing a large part of my stomach and having a restricted oesophagus is that it’s harder to eat, so for a few weeks I was still attached to a feeding tube at home and connected myself to a bag of liquid nutrition every night in bed. I slept alone along with the droning and beeping and clicking of the timer on the feeding machine. I had also started a second course of post-op chemotherapy, but it became apparent that my body couldn’t cope, and they stopped the treatment.

I’m convinced visualisation really helped

And coping is an interesting thing… everyone does it differently. I always had a problem with the language around ‘battling’ cancer. When people encouraged me to fight it or said, ‘You’ve got this, you’ll beat it,’ I could never quite square that with how I was feeling. I didn’t ever see what was ahead of me as having a winner or a loser – I just wanted practical strategies to get through it. What to eat, how to exercise, meditation, etc. One thing I did do a lot of was visualisation – imagining the cancer was a rotting part of an ocean reef and little cleaner-upper fish were pecking away at it to remove the dirt and disease and restore the reef to its glorious, colourful, peaceful beauty. I’m convinced it had an impact – the mind and your will can be a powerful tool.

Eating was very difficult to begin with – soups and liquidised food (though I’d suggest drawing the line at liquid lamb stew) – and it took a good six months for me to work out how and what to eat. It can still be really challenging, and I need to be very mindful, only eating small amounts and often. In restaurants I started asking for smaller portions as I hate food waste, but they very rarely provide that option.

And then there’s the bowels – surgeons are OBSESSED with your bowels. How often? Colour? Consistency? I won’t say too much but there have definitely been changes and adjustments to be made in that area. Very common post my kind of cancer. Creon enzyme is my constant companion to make sure nutrition is extracted from food before it’s too late.

I just wanted life to be normal again

People often ask cancer patients if their outlook has changed having been treated and survived, as if it unlocks some secret wisdom section in your brain/soul/psyche. I’m not sure it did that for me. After four months off I went back to work as soon as I could (I am lucky, I love my job and my bosses were absolutely brilliant supporting me through it all) and I wanted life to be just like it was before.

Writing this has really made me wonder if I have a Seinfeld ending (‘no hugging, no learning’) or, if five years on there have been some changes. I would say – do not despair; even in your darkest moments (and there will be very dark moments) the body can recover and it’s amazing how it does. I still have discomfort eating but no pain and I am getting stronger every day. Weight training and golf might not be for everyone, but it’s worked for me. I think I have also finally (at 57) cracked the work/life balance thing. I found it really helpful to talk and share my experiences and find some cancer buddies. I now have network of fellow cancer pals at work and beyond. Helping other people through their cancer journey can help you to navigate yours.

Practicing gratitude

So, it turns out I did learn a few things on the way and get a bit of perspective on life. I wake up and practice gratitude every morning. Happy to have come through a cancer that has just a 13% survival rate and coming up for five years clear. Grateful my parents are alive and well. Grateful for my daughter and my wife. My wife who got me through the whole thing with such patience and love. And I can’t help thinking it’s as bad (if not worse) for your partner or other loved ones. While you have your head down getting through it, being treated, and attended to – the centre of attention – they are worrying they might be left on their own. If therapy is on offer they might need it just as much as you. Waking up in the morning beside her is therapy enough for me.

THE BIG PS...

There is one thing that’s happened – I realised I am resilient and can find the adventure in the weeds of adversity. One utter privilege for me is that I have become a patient advocate for some ground-breaking research my surgeon, Professor George Hanna, has being doing into early diagnosis of Oesophageal and other cancers. It means I occasionally go to meetings with PHD students who are doing mind-boggling studies and tests into micro-biological things and who do massive science presentations, none of which I can understand.

But the most brilliant thing is that the Professor has developed a breath test that picks up the early signs of this and other cancers – a simple tool that GPs could use, or you can even do at the chemist or from home. You basically breathe into a bag like a breathalyser test and that’s it. It’s undergoing clinical trials in the field at the moment and if adopted could save many lives and the health service a lot of money. If you have a spare five minutes we’d be grateful if you could fill out the attached survey which aims to assess patient attitudes to the test.

https://imperial.eu.qualtrics.com/jfe/form/SV_4ZW3G5V5TFb2O7c 

Phil Edgar-Jones, OBE, is Director of Sky Arts and Entertainment at Sky UK, looking after shows as diverse as Portrait and Landscape Artist of the Year and Rob and Rom Versus.. He took the Sky Arts Channel Free to Air in 2020, making the range of Arts programmes available to all. He is a non-executive Director at English National Opera and the National Film and Television School and was awarded an OBE in 2023 for services to the arts and TV – despite running Big Brother when it was on Channel 4! He has a wife and a grown-up daughter, lives in North London and plays bad golf on days off.