James Turner, 43, lives in Northumberland, England and is married to Claire. They have two children – a boy aged five and a girl aged eight.
Both James’s mother (in 2000) and his brother (in 2011) died of stomach cancer. It was only after his brother’s diagnosis that James learnt about hereditary diffuse gastric cancer and the CDH1 gene mutation that puts you at risk of developing it. Before he had genetic testing, however, a biopsy taken from a gastroscopy at the start of 2013 suggested possibly cancerous changes. A total gastrectomy (TG) quickly followed in March 2013. Here he explains what happened next and gives his advice on how to live without a stomach…
“What this basically means is that you’re cured.” These were the words from my specialist nurse as she explained the results of the analysis of my stomach a few weeks after my operation. They had found multiple sites of pre-cancerous cells around the stomach lining. But by removing the stomach, they had removed the risk of this ever developing into stomach cancer. No stomach meant no problem. I just had to get well again.
And now, a year and a half since surgery, I think I have, indeed, broadly got well again. My weight hasn’t gone down for months. The surgery scar is barely there. And the worst of the eating problems have long since passed.
But it’s not been easy, that’s for sure. One of the hardest parts has been finding advice on the practical steps to get by. Of course, the No Stomach for Cancer website is a great source of information – particularly the blogs and stories from others in the same situation. But even here, you have to do a bit of rummaging to find tips to help you manage the day-to-day.
And also these people are stomach-less super heroes: They run half marathons! They do triathlons! Kudos. I can’t read enough of this sort of thing. It’s great to be inspired and these people are truly inspiring. But I also think it’s fine not to be a super hero and just to get by.
So if you want some advice from someone who has made too many post-operative mistakes to count – and is definitely a getting-by-er rather than a super hero – I’m your man.
1. The one thing I can’t help with As far as I know, there’s no easy way to find out that you’ve got the CDH1 gene mutation and need a total gastrectomy. You either have to have cancer yourself or someone you love has to have had cancer. As you can see above, half my family died before I knew I was at risk of stomach cancer and needed a TG. You might be in a similar situation and, if you are, my heart goes out to you. My wife, Claire, was the greatest support both when my mother died and then when my brother died. The only small piece of advice I can give is that I read a book called Who Dies? and this was a help to me. It might just be some help to you, too.
2. After your operation, eat healthily but not that healthily “What the hell can I eat that doesn’t make me dash to the bathroom?” I promise you, you will think this many, many times. I also feel that people all over the Western world – stomach or no stomach – should eat more fruit and vegetables and less processed food, meat and dairy. Some of my worst food incidents, however, were after eating supposedly healthy things – melons, apples, potatoes. So what’s the answer? Well, nuts will be your friends – they are small and packed with calories without being sugary (pistachios in particular are my new BFF). I also find that home-made fruit and vegetable juices work for me. But don’t beat yourself up too much. You are recuperating from major surgery. Processed foods (biscuits, chips, popcorn etc.) might not be nutritious, but they do have lots of calories. And in the early post-operative days, that’s more important than nutrition.
3. Revel in your new found slimness There’s a bit in the 1990s remake of Cape Fear where the baddie (Robert de Niro) tells the goodie (Nick Nolte) that after the age of 21, you can’t help gaining roughly a pound a year. And, before my operation, aged 42, Bobby had it pretty much spot on for me. And then, a few months later – Zap! Pow! – it was all gone: I had the body (well, the weight, anyway) of a 21 year old. There’s not much good to be said for CDH1 and having your stomach taken out, but this is definitely the upside. Enjoy it.
4. Get some structure in your life It feels like a long time since I could say I was properly ill. But what I do get is a kind of wooziness or doziness. There are hours, sometimes days, where what I really want to do is just sleep and nothing gets done. I’ve found a cure though: a website called beeminder.com. You set up goals for just about anything you can measure (number of pistachios eaten, fresh juices made, minutes of exercise) and you have to pay money if you fail to meet your targets. Trust me, Beeminder it and it will be done.
5. Never call yourself a cancer victim I wouldn’t even call myself a cancer survivor. I just don’t want to be defined by cancer or not having a stomach. There’s a really wonderful video on You Tube called ‘I’ve got 99 problems and palsy is just one of them’. And that’s how I feel about not having a stomach: It’s just part – not the whole – of my life. If I could change just one thing in my life so far, it wouldn’t be having a healthy stomach. That wouldn’t even be in the top three – you can work out two of these for yourself and anybody that knows me knows the third.
So there you have it. If you are facing up to life without a stomach, then I know you can do it. You will almost certainly be much more of a super-hero than I’ve ever been. You can take this in your stride. Stay strong and stay positive: you are nobody’s victim.