James, 44, lives in Manchester with his partner Andrea and sons Ben and Daniel. He was diagnosed with a neuroendocrine tumour, with the primary in the pancreas, in 2015.
“There’s no other way to say this…you have cancer”
Me? No, it cannot be me. I’m never ill…this was not part of the plan. It was 9 September 2015, and I was 42. Immediate thoughts turned to my partner, Andrea, on her way to the hospital, and my two boys, Ben and Daniel. I looked out of the hospital window. The pendulum had not just swung, it had thrashed round in a wide circle and tipped me upside down. What happens next?
I’d arrived at the hospital that morning for what I thought was a simple stent procedure. I’d been feeling ill for some time, yet at no point did I think I was a conscript to the band of cancer sufferers. Having been relatively active (rugby/cricket/gym), I had put on quite a lot of weight after our second boy was born as I became less active and was eating unhealthily. In September 2013 I weighed 24 stone. Hitting 40, I spent the best money I’d ever spent on a personal trainer, and lost nine stone.
At the turn of the year I’d noticed that my metabolism seemed to have changed. At the start of 2015 I was pooing seven times a day. My diet regime of fresh veg and lots of white fish/meat had lapsed over the Christmas of 2014, and I was back bingeing on the crisps, chocolate and cheese and pickle sandwiches. I was knackered too. I just couldn’t lift my head off the pillow. At lunch I was often dropping off again, and at night I’d be falling asleep at 7.30pm. Previously I’d be up at 5am and off to work.
As 2015 progressed my bowel habits were like rusty tap water, seven times a day. Sometimes I couldn’t manage the drive to work without an emergency stop. What the hell was happening? Despite being back to my bad eating habits I was still losing 2lb in weight a week. I’d come home from work, exhausted. Andrea would say, “You look grey”, or my skin would sometimes have an orange tinge. People would say, “You’ve lost so much weight!” (This would make me feel good). Some would say, “Is everything all right?”. Yes, I’d breezily reply, I’m back pounding the gym, I’m thinking of making a rugby comeback. In my head, I would be thinking – I’m knackered, my stomach is wrenching itself out of my body. I’m drained.
Nothing to be seen
By May 2015 it got bad. I took a rare trip to my GP where blood tests showed high blood sugars. He told me I was borderline diabetic. I was losing weight though and by changing my diet, I thought I would sort it. My GP sent me for a colonoscopy to see why I was having problems. The camera never lies, and there was nothing to be seen. The colorectal surgeon said that I either had irritable bowel syndrome or ulcerative colitis, most likely to the former. He wrote ‘fodmap diet’ on a scrap of paper, and told me to google it, follow it and accept my new way of life, eating bland, tasteless food.
In late May 2015, I walked the Yorkshire Three Peaks with some friends. This will be easy, I’d thought, I’m lean and fit. But after the first ascent I feel unsteady on my feet, then we stopped at a pub to eat. Embarrassed, I said, “I can’t go on”. I was thirsty like Alec Guinness in Icecold in Alex, downing about four pints of orange juice and lemonade. There was a strange taste in my mouth. I fell asleep in the pub. The lads completed the walk, I didn’t. I felt awful, not just for the walk, and letting them down, but so drained.
Shoulders back, chest out
In August 2015 we took a family holiday to Cornwall, near Falmouth. I was so tired, my bowels were all over the place, I didn’t want to eat. And I was SO cold. I’d sit in the sun in my puffer jacket, shivering, glowing orange. I was so miserable, I was never ill. I didn’t tell anyone how much pain I was in, until one night in the holiday cottage my stomach felt like it was going to explode. I announced to Andrea, “I’m so sorry for ruining the holiday, but I’ve got to go to the doctor.”
I love my family, and we love Cornwall, and I thought I was ruining it. I went to the GP, he was semi–retired, and he recognised my surname. He asked me if I knew Roger Dadge. “Yes,” I said proudly, “He’s my Dad, well he was, he’s no longer around.” The GP trained under him when he was out of med school, how strange? “I’m sorry to hear he’s passed,” he said. Then, “Oh, your blood results, your sugars are through the roof. You’re jaundiced, you’re anaemic. You need another referral. Right away.” The holiday was ruined.
September 2015, in hospital, with a different colorectal surgeon. He’d been so diligent, test and scan, scan and test. He spotted something on my ampulla, he thought it was a mass, or an adhesion. So far the tests had shown it was “nothing nasty”. I was there for this minor operation to put a stent in which should clear the way so that my pancreas could start working properly again. Since I’ve always been ‘Mr Indestructible’, I’d always attended all the tests and consultations on my own. We’re a busy family, I’ve a busy job, and I just wanted to go in and out to these appointments.
I was dressed in the gown, ready to go down, and the consultant came in. “You’re always on your own. Can someone come?” he said. “There’s no easy way to say this, you’ve got cancer…” Andrea came right away. I’m sorry, I’ve ruined everything.
The pendulum swung right round, and I was off to the brilliant Christie hospital. The people were amazing, BUT I HATED IT. I could smell rotting flesh, everyone else was ill, NOT ME. Shoulders back, chest out, I’m not one of you, I’m not ill.
I met the oncologist for the first time. Andrea was with me. I’d looked him up, triple first from Oxford. He told me I had a cancer on my pancreas – a neuroendocrine tumour, with the primary in the pancreas. It was a big one; he said they needed to shrink and peel it away from some major blood vessels so they could operate. “You can start chemo next week,” he said. It was my son Daniel’s birthday the next week. I didn’t want to ruin a seven–year–old’s party, so we started the chemo the day after. Don’t look at the internet, the oncologist said. I looked at the internet. The screen might as well have said ‘Your life is over’.
Tell me what I need to do
I had so many questions; how long have I got, how long have I got, how long have I got? It turned out no one knew. Just like before really. How much information do I need? Bloggers, other sufferers, other carers, they all know the minutiae of their illness. K scores, blood counts, up down, in out, shake it all about. I couldn’t cope. Just TELL ME WHAT I NEED TO DO! The oncologist said he would give me a prognosis in years if I wanted. Yes, of course I wanted that. He told us, Andrea wept. She didn’t think it would be that short, she said. I got around the conversation by saying, “Get me 11 years, Daniel will be 18. I just want to see him to adulthood and my job is done.” That was the deal.
I had the chemo. I tried to read the list of side effects, but it was too long and I was so tired I couldn’t concentrate. “It’s basically anything up to but excluding my head falling off,” I joked. I got on with it, “Shrink and peel, shrink and peel” I’d chant. My GP said the chemo would be tough, he said I might be able to get out once in a while, in the car. WHAT NO WALKING? I was off out, walking on the moors. Every step, “shrink and peel”. My chest was exploding, I couldn’t breathe. I had to phone Andrea to pick me up.
We told the boys. I looked them in the eyes, glistening, so clear, wide–eyed and full of hope. I saw a light going out. Ben was playing the trombone in a carol concert. How many more of these would I see? He told me he’d thought of a cure for cancer; all he needs to do is find a virus which will attack the cancer cells, and it can be injected in to me. Great idea I say, I’m doing my best not to ruin it. The next week immunotherapy was in the news. I was thinking, “This was Ben’s idea.”
Christmas came and went. The shrink and peel chant was not working, although the tumour had stopped growing. I still don’t know all the detail. Some people told me I should know everything, get copies of my notes. I couldn’t bear it, I just wanted to know what I needed to do.
The treatment hasn’t worked
Nothing was stopping me, I was running up and down the beach with the boys, laughing, playing touch rugby, jumping off hedges, kicking footballs. I’M NOT ILL, I’d tell myself. At night I could hear my heart beating in my ears, louder and louder. How many Christmases had I got? How many heartbeats?
In April 2016, the chemo was over. The tumour was still big, and still too close to the major vessels. It was too risky to operate. The doctors said they could put me on another chemo drug, to try and stop the cancer spreading. I agreed, found myself lying face down and a massive needle was put in my left buttock. No operation. Back at work, people asked how I was. I’d never say, “The treatment hasn’t worked and I don’t know how long I’ve got. Maybe see you next week, maybe.” I didn’t want to ruin it for them too.
I googled my tumour again, and discovered I had a celebrity co-sufferer. Everyone needs a celebrity to keep up with these days. Mine is Steve Jobs, and I saw a picture of him in his final days. I’m Mr indestructible, shoulders back, chest out. I’m NOT going to end up like that. I noted that my tumour was bigger than his, but I’d opted for chemo rather than relying on meditation as my treatment course.
Give me strength
I ran the Manchester 10km for charity, with my mates. I’ve always been a cart horse, plodding along. The kids were watching with their mates. They’d made a banner, I love them. Shoulders back, chest out, run like it’s easy, you’re a thoroughbred, I told myself. I stumbled over the line, hugged my mates, kissed the boys, they said they were proud of me. But I thought I was ruining it for them, it’s not their job to give me strength, it should be the other way around.
My oncologist said that the buttock injections would continue for as long as I could stand them, but that I should see the surgeon who would explain why I couldn’t have the operation. So off I went, on my own as I didn’t want to ruin another day for Andrea. The surgeon, Saurabh, was there, and he disagreed about my operation. He said he could operate, but he hadn’t done it before, and it was a big one. He’d assisted to a surgeon in Cambridge though, and he wanted to give it a go. A trip to Cambridge to see ‘The Man’ later, and we were ready to go.
Saying my goodbyes
I said goodbye to work, made a will, wrote letters to Andrea, Ben and Dan. I made more specific arrangements about songs and poems for my funeral. I wanted everything to be settled when I was on the operating table. I got fit, fitter than I’ve ever been. I out–trained my personal trainer. He was on the floor, not me. Every bead of sweat was the cancer screaming in pain.
‘The Man’ and his team were up from Cambridge, but I wanted Saurabh to do it all, I liked him, a lot. In the car Dan was singing ‘Wonderwall’, by Oasis. He sang the line “…I said maybe, you’re gonna be the one that saves me.” You are my saviour Dan, I thought. I’m getting through to your 18th, both my boys will be men. It’s all going to be fine.
We bought a new house, with a conservatory looking over a wood, which we would move into after the operation when I was fit enough. It was a new build, so “if things go wrong there’s scope for single level living”, we don’t say as we were being shown around. It was Dan’s birthday after the operation, so we have a massive party before my operation, but we don’t say “just in case”.
We told the boys about the operation. I would be away, doing my best, as I’ve always tried to do. I told Ben that as the eldest he would be the man of the house while I was in hospital, and I told Dan that he must help Ben with Mum. Chest out, shoulders back boys, you’ll be fine. I heard them cheering me in the run, all the way round, and I’m always cheering them on.
I have faith in you
Andrea dropped me off at the hospital. I told her I was ready, that she could go. I didn’t want her to ruin the boys’ evening by being late, she couldn’t do anything there and Ben had homework. My sister had the letters to give to her, just in case.
Saurabh came in to see me, he was ready too, all the contingencies were in place and ‘The Man’ was there. He asked me again if I was happy with him doing the procedure. “Absolutely,” I said. “I have faith in you.”
I was in a gown, and the anaesthetist told me to expect a sharp scratch. A junior doctor nervously put a cannula in and it bursts. “Don’t worry,” I say. “These things happen.”
…I’m playing cricket, at my local club. I’ve not played for seven years, but I’m fit enough to return. I’m batting, on 96, and the ball is pitched short enough for me to caress it through the covers off the back foot into a gap for a 4, when, “Wake up James, sit up, that’s right, breathe”…
I’m alive, I AM ALIVE! Saurabh arrived, and said, “I got it all out, as far as I could see, but tests will confirm.” I asked if he did it all without the need for “the man”. He did, I knew he would, I was so happy. I lay back in bed in the high dependency unit. Andrea came in to see me, I sat up, shoulders back, chest out. YOU ARE NOT ILL. As she talked to the ward nurse, I mouthed “I’m so happy, I love you.”
I’m sitting typing this in my conservatory, looking over the woods. I’m still under surveillance. there’s still a chance I will end up looking like Steve Jobs, but I’m not in pain like I was.
Cancer grabs you, but it can never take you. As trite as it sounds, everyone is different, we all have different family circumstances, support networks, treatment facilities, approaches to information. What you need to work out is the best way to approach the fight, and the treatment.
What is constant is hope, for that is the only thing which will keep you going, for there will be dark days. Hope doesn’t just come from within; you will find it all around. Live for the moment right now. After all, everything is terminal, it’s just how you make use of your time before reaching the terminus. Do not be frightened to be honest, with yourself and with others. Keats wrote, ‘Beauty is truth, and truth beauty, that is all ye know, and all ye need to know’. I never knew the true meaning of that until now.