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. 

 

Doing Cancer Wrong

For whatever reason, I never seem to cop on to the right ways of doing things - socially I mean - especially if there isn’t a written set of instructions. I have an innate tendency to do precisely the opposite of what society expects from me. If I am supposed to smile and be sweet, I scowl and swear. If I am supposed to frown and shake my head, I tip my head back and laugh.

Most of this is unconscious, but then I also accept that I engage in deliberate divilment quite frequently too.

I just can’t help it.

It has been dawning on me over the past 11 years (slow learner) that I may be approaching the cancer patient lark the wrong way.

Let me try to elaborate:

• I never wore the wig/turban/headscarf. Even when my hair looked like something you’d find at the end of a very manky plughole, I still persisted in convincing myself it was grand. I assumed that bald cancer patients waited until they had actually lost all of their hair before they reached for the expensive headgear, but I have now surmised that they in fact shave it quite a bit before that, thereby looking less like an electrocuted mountain goat and more like a demure, stoic, and oh-so-brave beacon of strength.

• I didn’t complain much (I can hear my family guffawing in disagreement, but bear with me). I kept my public discussions about the misery of cancer treatment relatively sparse and tried to have a good ratio of 3:1 of positive to negative posts.

• I failed to big up the amount of chemo and other treatments I was getting. Triple, quadruple, high-dose chemotherapy; I never really got into the numbers. I took a load of drugs, they worked (mostly) - super.

• The biggest mistake, probably, was the failure to cash in. Not a single free #gifted experience in a luxury spa, not one complimentary cashmere scarf, no community fundraisers to pay for my Leonidas addiction. It goes without saying that I got some absolutely gorgeous and heart-wrenchingly thoughtful gifts from friends and family, and even from people I didn’t know very well, but the bleeding dry of commercial entities with a huge corporate social responsibility budget passed me by.

• I could have thought of all the ways my cancer could have been prevented, and then gone after the people who failed to prevent it. Hot dog manufacturers. Sir Henrys. Murphy & Sons. Surely one of them should be held responsible? And pay up?

• I could definitely have milked the social media market and got myself a squillion followers, and then sold them tiny packets of curcumin to cure all their ills. If only I had seen the Belle Gibson documentary sooner.

• I could flog a badly written book.

The possibilities are endless and I have walked right past them.

Dumbass.

Speaking Up

I'm about to do it again. 

Parade myself and my cancer-ness around the place. 

Flaunting my flaws. 

Dribbling on about myself, my wellness, my illness.

Exposing myself to accusations of bravery, or resilience, or miraculousness.

Exposing myself to the possibility of no one caring less, or throwing their eyes to heaven.

Would she ever shut up. 

Yeah yeah we know we know, stop going on about it. 

Oh well.

Too late now. 

I have cancer, you know. 

 

Still Working

I tell people I am getting chemo every two weeks, but that is not entirely true. 

I am often tempted by my innate tendency to divilment, to write things that are not fully veracious, just for the giggle. I could tell people I have been cured by angels, or that I take ivermectin every second day, or that tequila slammers have been the key to my recovery.

None of those things is true. And in the spirit of full disclosure, I am not actually getting chemo. I am getting cetuximab, which is a monoclonal antibody and therefore known as a targeted therapy, rather than a chemotherapy. 

Collectively, the various gunks that they administer to knobble cancer are called Systemic Anti-Cancer Treatment, or SACT. 

As in, your cancer gets sacked. Out on its ear. (Unless you have ear cancer, in which case out on its something else).

Redundified. Severanced. Forcibly quitted. 

Or, if you are of a more medieval mindset, pillaged. Ravaged. Destroyed.

That is the plan anyway. 

"Medieval" comes to mind when I feel the teeny but acutely painful paper cuts around my fingernail as they greet an unexpected drop of lemon juice or try to press on an unyielding remote control button. Persistent, consistent, insistent shoots of pain all day and night, from pathetic little scars that look so insignificant. 

This is the main side effect from the cetuximab. Other little joys include ridiculously long eyelashes which brush off the inside of my glasses, and a lovely pustular rash on my face, back and chest. I may have mentioned this before, but don't at me, as they say. 

It doesn't cause my immunity to drop or make me particularly tired. It takes about 4 hours to administer and I pop into the lovely "chemo" ward people every two weeks where they sort me out. (I think the chances of them changing the name to the SACT Ward are small). 

I had scans before Christmas which show a sustained improvement in my liver tumour and nothing new anywhere else, so all is good. 

I have come to accept the likelihood that I will need to stay on some maintenance treatment into the future; like, looonnnggg into the future. I was ferociously lucky to get away without it before. Nearly every other Stage 4 bowel cancer patient I know has needed some kind of ongoing therapy to keep them ticking over. I was special but now I am definitely not.

It's fine, like. 

It messes a bit with my thoughts about returning to active duty as a GP.  I will have to ponder that. 

For the moment, I am delighted to keep working with the wonderful people in the National Screening Service, while the wonderful people in the Mercy University Hospital are still working to keep me alive and well.