Life, death, sex, drugs and a year of living with cancer

Tomorrow is the first anniversary of the surgery which both saved and fucked up my life. Since then I haven’t had a meal or been able to talk normally. (I can't sing either. But then, I never could.)

The good news is my ability to drink has improved in leaps and bounds over the last month. I may always struggle with eating, but I'm not so bothered if I can meet people for a beer or a coffee. The types of food I can swallow may be for ever limited. It should, however, be sufficient for me to stop having to be fed through a PEG tube into my stomach. I'll be able to swim again.

Beyond the practicalities, now seems a good time to look back at what the last year's taught me. Don’t expect anything profound. I'm no philosopher. Just because I'm often not that talkative doesn't mean there are great thoughts buzzing round my head. It just means I'm not always that good at small talk. Having had radical surgery on my tongue and surrounding areas hasn't exactly been beneficial either.

I do know I am uncomfortable with many of the militaristic cancer cliches. I haven't won a battle. I'm not brave as, to me, that suggests an element of choice and helping other people, neither of which is true. I've survived.

My current state of health is down to a combination of skilled medical intervention and 'luck', if that's the word, in having a treatable form of cancer. It's not the result of prayer or positive thinking. If I seem to be positive it's simply because I believe if life's shit, there's no point in adding to it by being miserable.

I have also learned that many cliches are only half true. For instance: “It’s at times like these that you learn who you real friends are.” To a point. What I've been surprised by is how numerous my friends are. I really have been reduced to tears by the sheer volume of those wishing me well and offering to help. The problem is that there’s generally not much that can be done except by those closest.

Barbara has borne the heaviest burden, but there are others who have been there when needed. It would be crass to name names. Equally, close family has pulled through in a way that would probably have been impossible for friends. The people who know will know what I mean.

The main legacy of the tumour under my tongue is dysphagia, the inability to swallow properly. I've written about it before and described how, strangely, I've got used to it. I don't get hungry any more, which leaves just the social aspect of eating and drinking. Being in a club, bar or party without a glass in your hand feels wrong. It shouldn't matter to me, but it does. It’s not going to make me stay in, but it has dimmed my enthusiasm for going out over the winter, but now I can drink there's no keeping me in.

It took until January 1 to make it to a club. Well, I wasn't going to miss DC10 on New Year’s Day, was I? And this time, for her first ever visit, I took Barbara along. We both really enjoyed it. The music was good and there were loads of people we knew. Even my oncologist was there. I probably shouldn't have been surprised. He is young and good looking. But he didn’t recognise us at first. Then the penny dropped. He quickly clicked from rave into sort of professional mode. “Es todo bien?” he kept saying. I just grinned.

Of course, perhaps I shouldn't be bothered about going to nightclubs at my age. But, I've never grown out of sex & drugs & rock & roll. I did go through a long sensible phase when I wore suits to work and all the rest of it. That really wasn’t me. It always felt as if I was acting.

My greatest pleasure has always been the joy of sharing a musical experience with other people. Often lots of other people. In my youth that experience was at rock concerts. In Ibiza it’s more likely to be dance music. As long as the shared passion of artists and audience is there, it’s the same difference to me. (Although I have become a little jaded with guitar bands that don't seem to have moved on since the 1970s.)

If you want to call my move to Ibiza, “arrested development” or a “mid-life crisis”, go ahead. I don’t care. I’m happy. (And I should say that it was me that pushed Barbara into moving here, although I think she’s happy.)

None of those feelings in the last paragraph are any different as a result of my cancer. It’s my view of what happens next that has changed. I never used to think much about the future. So when people ask, for instance, “Did you think you’d still be going to see rock bands in  your fifties?” I couldn't answer. I never thought ahead much. Or at all, really. My future concerns never extended more than a few months. I suppose that makes me immature.

I've never been ambitious or at all career-minded. As long as I've been earning something I've never worried too much about what was going to come next. “One day,” I used to think to myself, “I’ll find out what I want to be when I grow up.” It’s never happened. Of course, if I’d have had kids I would probably have been forced to think a bit more about a career, job security and a pension plan. I know some people manage to avoid feelings of responsibility even when children come along, but I know the middle-class angst weighs more heavily on my shoulders than that. Anyway, for whatever reasons, I never felt as if I was a proper grown-up.

So, when I was diagnosed with cancer, it felt as if I’d jumped from adolescence to old age in one go, missing out the middle bit. It’s not that I’d never thought about mortality before, but I’d always felt death was far enough in the future not to worry about today, or tomorrow, Or any time, really. With the cancer it became scarily imminent.  I never felt I was going to die within months, although I knew that was a possibility. It was more a matter of thinking that I’d do well to survive another 10, 20 years or whatever. But, if I look back 10 or 20 years, at the music, news or clothes, it doesn't seem that long ago.

I’m sure time is relative. After all, a week is the same proportion of your life when you’re ten as a month is when you hit your forties. It’s not surprising that things seem to happen faster as you get older.

Ideally, my cancer would have been a great motivator. Knowing I've only got a finite amount of time left should make me stop wasting what I have. Sadly, that's not the case. If anything I've become even better at procrastination.

The problem is I'm not quite sure where I'm going now. I am what I am when I grow up. All I know is I want to make up for the time and parties I missed last summer. Whether I have as much stamina in reality as I think I have. Who knows? But I'm determined to have fun trying. Just put me on that guest list.

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.

Reaching a Powerful Anticlimax

Everything’s been a bit of an anticlimax since finding out on Monday that I currently have no signs of cancer. I’ve carried on making a different sort of thick soup each day. I’m still enjoying those and discovering what works for me as food doesn’t taste the same as it used to. And there’s the challenge of getting the consistency just right.

Drinking’s more of a challenge. Liquids tend to make me cough. So I have to tense all the muscles in my neck to avoid choking. That doesn’t look too pretty, but it’s usually effective. I have enjoyed a couple of whiskies with plenty of water. (Bought a bargain 15€ Loch Lomond single malt which goes down nicely.) I also had my first coffee in six months, a cafe solo in San An on Thursday while I was waiting to get my hair cut. Coughed a few times, but it was worth it for that long-forgotten caffeine buzz.

And I’m off to Palma on the 28th for an appointment with the dysphagia clinic. They’re the ones that check my ability to swallow and who I have been totally ignoring for the last few weeks. I’m only supposed to eat crème caramel according to them. So when I see them again I shall, no doubt, just take the advice that suits me.

Best News Yet

Waited for nearly an hour and a half for my appointment at Can Misses… Then it took all of five minutes to be told by the oncologist that all my blood test and scan results were “very good”. Does that mean I’m in remission? “It means you’re not ill at the moment.” Well, that’ll do me. Next results I’ll get on Valentine’s day. Meanwhile I can stop taking the steroids I’ve been on for months. That’ll be a relief. I’d never experienced the joys of ‘roid rage before

First Supper

Just had my first meal with Barbara for over six months, my home-made broccoli and roquefort soup and a yoghurt. Doesn’t sound much, but it’s a real step forward. The only slight disappointment was I tried a few sips of red wine with it and they did nothing for me apart from making my mouth burn…

A Daal Moment

Well, I managed a bowl of my finest lentil daal. I must admit that I had to add yoghurt to get a consistency I can manage and I still wouldn’t quite classify the experience as “enjoyable”. Hopefully, if I persist it will get easier with time. It’s not long ago that a tablespoon-full of crème caramel would take me 20 minutes to eat. Now I can manage a dessert at pretty much normal speed. And, yep, it is a bit boring, but after six months of not being able to eat anything, a factory-made pudding is still a treat.

I’m also continuing with my quest to break doctor’s orders by taking the occasional sip of water. That’s a real challenge because thin liquid could go down my throat too fast and make me choke. I’ve had regular experience of that because I need to rinse my mouth out to stop it going completely dry. I’d spit out the water, but every now and then a little would “go down the wrong way”. (Of course there’s a wrong way to go down, you dirty-minded so-and-so.)

Anyway, I can now swallow the occasional sip of water without choking. I have a clear goal. A week tomorrow, on the 11 November, when I get the results of my tests I aim to have a glass of cava to celebrate being told I’m in remission. (If the results aren’t good, a glass of cava’s not going to be enough.)