Autumn Leaves

I wonder why so many people like autumn. Long before we had heard of hygge and pumpkin spiced lattes, many of my friends would say things like “thank god for tights” and celebrate when the heating spontaneously sparked up on a random September morning. 

I think it’s because summer is just too much pressure. MUST enjoy ourselves. MUST get out in the sunshine. MUST be all golden and glowy and active and lithe. MUST HAVE FUN!!

We had quite a topsy turvy summer. 

It began with our youngest daughter being sicker than any child of mine has ever been before. She had a perforated appendix and we spent five nights in hospital. It was horrific. 

She’s better now, thank goodness. 

Her main concern was that her scars would be healed in time for our massive family holiday in Mallorca in July. A gathering of nearly two dozen Fitzgibbons+ in one place. Yikes. 

It was lovely – hectic, but lovely. We celebrated my mother’s 80^th birthday, in the same place we celebrated other family birthdays before, and it is humbling to think how lucky we are to still be able to come together in this way, without illness (or homicide) coming between us. 

I was feeling a bit off while we were there, because my belly had mysteriously swelled up in the few days before our departure. I had had my routine surveillance scan just a couple of weeks earlier, and that was stable, so I figured my guts were just reacting to the anticipatory anxiety of the big get-together. It didn’t stop me from swimming every day or clambering over the hot rocks, so I wasn’t too concerned. 

When we got home I assumed things would settle down. Instead my belly button kept bulging more and more – I have a hernia there since one of my operations, and it is like a little sentinel of bloating, a reminder to lay off the white bread. But this time it was staying stuck, and I started to worry that it might be incarcerated (which is not a good thing for a hernia). I have an inguinal hernia too, and that was beginning to bulge alarmingly. 

I decided I better do something, before my entire guts burst out of my abdominal wall. I went to the Emergency Department, which actually isn’t as bad as people make out. I met some lovely nurses and doctors, who very gradually and carefully let me know that my pregnant-looking abdomen was not due to an overdose of baguette, or a strangulated loop of bowel, but was in fact a result of litres and litres of fluid filling my peritoneal cavity. This is called ascites, and if you say that word to a medical person they are physically incapable of stopping their face from saying “oh shit”, even if they try to shrug it off and smile a fake smile. 

Ascites is generally a result of liver failure, or else a few other things that are even worse news. 

My liver was fine. 

The word “curtains” went through my head a number of times.

This was unlikely to work out well. 

I had a drain inserted to relieve the pressure, which was by now pretty excruciating. 

Many many litres of apple-juice-looking fluid came out of me. I felt, and looked, a lot better. 

None of the apple juice had any cancer cells in it. Weird. 

Still though, it was very likely to be from the cancer. 

I left hospital and entered full-scale denial. Off camping for the week. Lovely. 

I felt so good I declined the offer of returning early from our week away to have a permanent abdominal drain inserted. Sure wasn’t I grand? Not a thing wrong with me. 

A couple of days later I was bursting again. Unable to move in the bed without severe pain. Feeling about 50 weeks pregnant. I had to go back to the ED. 

This time my hospital stay was quite a bit grimmer, for a number of reasons. Mostly because I felt like an idiot for not pre-empting it by having the drain put in when it was offered. 

Anyway, the very kind people didn’t hold my stupidness against me, and gave me lovely drugs while they tunnelled a tube into my belly flesh. This device allows me to attach a bag to myself whenever my tummy swells, so that I can harvest another litre or two of apple juice and prevent the pain and waistband-bursting expansion. 

I’ve been doing this now every couple of days for 5 weeks or so. It’s a strange sensation, like a tiny vacuum cleaner swooshing around in my innards. The fluid even flutters and rumbles, very similar to the feeling of a baby moving around in there. But this time I have no idea of my due date. 

I had a PET scan which was expected to confirm that my cancer had spread to my peritoneum (the lining of my abdomen). This was the most likely cause for the ascites, and even though there were no cancer cells in any of the many samples of fluid that were sent to the lab, we still assumed that the PET scan would show little shiny white spots of metastases in my belly sac. It didn’t. 

It showed some bits of something that could be metastases, but they didn’t light up like my liver had last year. My liver is all calm and quiet now, subdued by my last round of chemo. And these peritoneal nodules are not “avid” (that’s PET-scan speak), they are more like Ferris Bueller in a chemistry class. Languid. 

Right now, I don’t really know where I stand. 

I will have a laparoscopy, where a learned chap will look into my abdomen with a camera and see if he can spot some nasties. And if he does, he is a dab hand at eviscerating them. Only thing is, that often involves excavating quite a few innocent viscera too. Peritoneal surgery is no walk in the park, and has to happen in Dublin which is an additional urgh for me. But of course I will be grateful and happy that learned chaps are willing to do what they can to continue to prolong my life. 

So autumn has begun with me regularly harvesting apple juice from my own tummy, and pondering the march of time. 

Winter is ahead. Let’s get those cosy pyjamas out. 

None of This is Easy

 I don't usually admit that. 

I don't usually state the obvious, that having cancer for a long time is actually quite hard work. 

Because the alternative (in my case) would have been having cancer for only a few months, and then landing in a satin-lined coffin in a cold and draughty funeral home on a Tuesday evening. 

So I persist in my relentless positivity and life continues on. 

Guinness Envy

If you knew you were dying, what would you do? 

Would you take out a huge loan, buy a crate of expensive champagne and a red convertible, and drive off into the sunset to have the biggest party of your life?

Would you smoke a load of Cuban cigars, snort a mountain of Colombian cocaine, and tell your boss exactly what you think of him? 

Would you head to Vegas and place your life savings on a random number on the roulette table? 

You could do all that, and then find out that the diagnosis was wrong and in fact you had another 20 years in front of you with not a penny to your name, massive debt, a very unsympathetic employer, and a savage hangover. 

How do you know when the time is right to stop frantically trying to live, and just enjoy dying? 

The World Health Organization has this fancy infographic to show how many cases of each cancer are "preventable". They mean that those cases are caused by things like smoking, alcohol or obesity and are therefore life choices rather than, say, genetics or age, which a person cannot change. 

So let's say you get a cancer that is usually or often associated with a life choice. Lung cancer is the classic example, with most people rightly associating it with smoking. This means that people who have lung cancer either spend their time feeling guilty and ashamed that they smoked and gave themselves cancer, or they are in the smaller group of people who get lung cancer but never smoked, and spend their whole time explaining to people that they are different and special. 

What if you get lung cancer and continue to smoke? You could say to yourself, well it's too late now, the horse has bolted, I didn't want to give up before and I don't want to give up now. You could say to yourself that my prognosis is so poor I might as well enjoy my last few months. You could say to yourself that I deserve to have the small pleasure that cigarettes give me, because I have to endure the horrors of anti-cancer treatment and the only thing that gets me through the day is the fragrant waft of a Marlboro Light. 

What if you get lung cancer and you immediately throw out your half-empty packet? You are determined to do everything you can to live as long as possible, now that the threat of death is over your head. You juice all the vegetables, buy all the crystals, pray to all the gods. You do all of the Right Things. And yet you still find yourself on your deathbed three months later, yearning for one last smoke, but you are too ashamed to ask your loved ones to wheel you outside. 

There are lots of things that I have changed in my life to give myself the best chance of living as long as possible. I try to exercise as much as I can, even though my body is pretty wrecked from numerous surgeries/radiations/toxic gacks. I was smug as a bug when a paper was published recently showing how effective exercise can be for preventing recurrence of bowel cancer. Except then I stopped to think, and I realised that all of my 10,000 stepses and downward-facing dogs had not prevented my little hiccup last year - the cancer still came back. 

I stopped eating red meat and processed pig, even though I really like them both. 

I stopped drinking more than 1 or 2 units of alcohol at a time, and never more than a couple of times per week. 

I checked the radon levels in my home.

I changed my working life to try to minimise my stress levels. 

I do all of these things because I feel obliged to do the best I can for my children. If I don't do the Right Thing, they could rightly feel that I didn' t do enough to stay alive as long as possible.

But recently I find myself feeling overwhelmingly jealous of people who can do what they like, because these thoughts aren't in their heads. 

They can enjoy the mellow wondrousness of 3 glasses of wine. They can hurl into the fifth pint of Guinness, thinking "NOW we're having fun!". They can make their way through a massive charcuterie sharing plate, all by themselves, and lick their chorizo-y fingers in delight. They can have the odd rollie because it's only the one, and sure it's all natural anyway when it doesn't have a nasty industrial filter on the end. 

I know of other bowel cancer patients who haven't changed their consumption habits in any significant way, and tuck into a nice Full Irish whenever the fancy takes them. I am in awe of that detachment, that nonchalance. Other people have livers which have been invaded by metastases, and belted into submission by surgery or radiotherapy, and yet they blithely knock back the Moët without seemingly another thought.  

I cannot decide what bit is making me jealous. Do I want to neck a bottle of cava? The last time I did that, I had palpitations for a week. Do I want to eat a load of processed pig meat, that is mostly mechanically-reclaimed?

Or am I just jealous of their stress-free little brains, with no existential crises about how long they will live or how their children will survive without them? 

And then I realise how stupid that sounds. Every one of us has these anxieties niggling away at the back of our minds. I am probably luckier than most, that I get to face up to them now and learn ways to cope. 

A pint of stout could really take the edge off, though.