Tag Archives: tongue cancer

Why I don’t miss eating and drinking… But I do miss being hungry and thirsty

When I was a kid I remember indulging in deep and meaningful debates about which disability I’d least like to have. Would it be worse to be blind, deaf or unable to walk? We never discussed what it would be like if you couldn’t eat or drink. But that’s my position now. I haven’t had a meal or even a glass of water since my cancer operation last April.

Until then I would have found it as hard as anybody else to get my head round the concept of “nil by mouth”. If you don’t eat or drink and you’re not on a drip, just how do you get sustenance? Why don’t you get dehydrated.

I’ll explain the actually very simple mechanics of “Percutaneous endoscopic gastrostomy (PEG)” in a moment. It’s not uncommon but, like me, you’ve probably never knowingly come across anybody with dysphagia, to give “inability to swallow” its posh name.

The whole nature of this impairment is socially isolating. It makes it hard to think of a reason for going out. Just try and think of something you do with friends that doesn’t involve eating or drinking. You’ll find there are precious few activities that don’t include one or both. Even going to the cinema usually involves a pint or a meal before or after. And, although I have stood empty-handed in more than one bar, it still doesn’t feel right.

At the moment it’s this social dimension I miss more than actually eating and drinking. That’s certainly not because I’ve ever regarded food as anything less than one of life’s most important pleasures. I’m definitely a live to eat rather than an eat to live person. In fact, one of the last pieces of work I did before being diagnosed with cancer was on Sid Shanti’s beautiful book Glorious Ibiza Food (& Music!). But, now I find it hard to remember what it was like to eat and drink normally.

As promised earlier, here’s how PEG works. You know that saying, “My stomach feels as if my throat’s been cut”? Well, my throat was cut in a big way when they operated to remove the tumour from under my tongue. Now, my stomach pays no attention. I never get hungry. Or thirsty. Instead, I’m fed and watered according to a timetable.

My food comes from the chemist in the form of half-litre pouches of high-energy liquid. My daily allowance is 1.6 litres of this stuff along with two litres of water, two cartons of yoghurt and a glass of orange juice. All this is pumped into a tube going straight into my stomach using a large syringe. There’s nothing complex about this. Essentially, it just misses out the first phase of digestion which normally consists of chewing to mix food with saliva.
There have been some improvements over the months. Now I can eat foods with the texture of yoghurt, creme caramel or fruit puree, but only in small quantities. I can’t say it’s an enjoyable experience.

Incidentally, it surprised me initially and still seems odd to people, that I can manage these foods but not water. The problem is my swallow reflex is very slow. So if I drink it often “goes down the wrong way” and leaves me coughing and spluttering. Thicker liquids travel more slowly down my throat so they don’t, generally, start me coughing.

My swallow reflex is getting better, but only very, very, slowly. In a number of ways this bothers me a lot less than I feel it should. And it’s taken me a while to work out why I’m not desperate to get back to eating and drinking. Partly it’s because the process is not the straightforward pleasure it once was. But that’s only part of the story. I can enjoy the flavour of some foods provided I avoid anything with a less-than-smooth texture and, even a hint, of vinegar or chilli. For instance, a couple of days ago I made myself a soup using roasted butternut squash, onions and garlic with a vegetable stock. I really liked the taste, but the experience of eating it was distinctly so-so.

The thing that is missing is hunger. I never feel hungry or thirsty any more and that’s made me realise what vital components they are in the enjoyment of food and drink. Obviously I knew that even mediocre food can seem wonderful if you’re ravenous. But that’s hardly a daily occurrence. It seems at least some pangs are necessary to make food a pleasure.

In other words: I don’t miss eating and drinking as much as I do being hungry and thirsty. Strange.