C is for Chemo – Turn to Face the Strange

Everything I used to know about chemo I learned from film and tv. As it turns out, the reality bears very little resemblance to the popular Hollywood portrayal.

Chemo is not generally an impossibly beautiful woman poncing around in a Pucci headscarf. Chemo is not generally a shared group therapy exercise where a set of ‘interesting’ individuals find inner truth and enlightenment around an IV drip. And chemo is not generally – unless I’ve been doing it wrong – a fertile ground to meet your next romantic interest. Seriously, someone pass me the standard issue grey cardboard sick bowl. Except don’t, because I’ve literally never seen anyone using one of those either. Less ‘Love Story’, more ‘50/50’, chemo is normal, everyday people, taking their medicine and trying not to let it get too much in the way of real life.

‘Chemo’ is a big, nasty name for hundreds of drugs used to treat cancer. Administered in various doses, frequencies and combinations, the key thing they have in common is that they attack fast growing cells. Which means they do an awfully good job at killing cancer but other, innocent, fast-growing stuff gets caught in the crossfire. And that’s why your blood, guts, nerves, skin, nails  and, of course, hair all take a bit of a battering. Some of the drugs have been in use for decades – several are descended from mustard gas – but in recent years there have been remarkable inroads in how the side effects are managed, both medically and cosmetically, which means the chemo patient is no longer necessarily singled out for the inquisitive and sympathetic stares of strangers. That girl you see in the coffee shop with the full head of hair tucking greedily into the plate of eggs benedict could well be on chemo right now. In fact, I know that she is. That girl is me.

There is a place, like no place on earth. A land full of wonder and mystery and danger! – Lewis Carroll, Alice in Wonderland

Whilst there is a long list of ‘common’ side effects, chemo affects everyone differently. What defines the experience is it’s innate strangeness. This is the anti-wonderland. It’s time to fall down the rabbit hole…

Perhaps the hardest thing to accept about chemo, is the contradiction that lies at its core – what heals you is going to do you damage. Cancer, at least in its early stages, is a silent assassin, which is why you can be walking around completely oblivious to the fact that you have it. Chemo, on the other hand, is essentially a poison; a chemical weapon that is going to turn your otherwise ‘healthy’ body against itself. It’s for that reason that many people reject chemotherapy, and I can understand their view without subscribing to the philosophy. Personally, I’m of the expansive “let’s nuke the b***ard whilst also giving acupuncture a go” school of military thought, and am therefore going to use any and all weapons in the arsenal (“My name is Maximus Decimus Meridius, Commander of the Armies Against My Cancer”). And I accept that, however marvellous I may feel, my body can’t be considered ‘healthy’ while there’s a bunch of maverick multiplying cells getting dangerously big for their boots. Chemo requires your long term survival instinct to win out over your shorter term defensive impulses. It means holding your ground in the face of the charging tiger instead of running like prey; suppressing every screaming urge to flight, and standing there to fight. It means reconciling yourself to the fact that things will have to get worse before they can get better, and trusting that what is about to make you feel very poorly, can ultimately make you well.

You have no idea how your own personal side effects will manifest themselves until you start. In fact, you have no idea from one day to the next exactly what not-so-delightful surprise chemo might have in store for you this morning. Will I wake up with all my hair on my pillow? Possibly. Will I wake up at 2am with incurable insomnia? Probably. If there is one thing you can guarantee, it’s that you can’t guarantee anything. The senses that you have relied on your whole life can no longer be relied upon, and everything you know is wrong. Or is it? On chemo you generally feel a bit unwell – to some degree or another – most of the time. Whether its nausea and nosebleeds, tiredness and tummy ache, or anaemia and arthritic joints, your body spends a lot of the time complaining to you that there’s something wrong. Except of course, this is right. This means the treatment is doing something. How you feel is no longer a meaningful measure, and so you rely on the absolute indicators: temperature and blood counts. If your temperature is normal, you’re ok. If it’s not, you’re not, and in the immuno-suppressed a hitherto harmless ‘cold’ can swiftly deteriorate into an ER kind of situation (except, it should be noted, without anyone who remotely resembles George Clooney). One minute you’re curled up on the sofa with a hint of a sniffle, enjoying your Saturday night Strictly like the rest of the population; 2 hours later you’re lying on a hospital trolley being pumped full of IV antibiotics in your own real time episode of ‘Casualty’. That’s why we struggle not to run away screaming if you sneeze in our presence, and why the BEST gift you can ever give your friends on chemo is to cancel your plans to see them if there’s any chance at all you might also be bringing them the winter flu.

Don’t mind her; she’s got Pre-Chemo Tension

Like all the unpleasant trials in life – exams, interviews, going to work – the hardest challenge with chemo can simply be to show up. Once you do, then the machine will kick into gear, and you’ll do what you gotta do, and at worst it will probably only be exactly as dreadful as you anticipated. I personally developed a hitherto undocumented condition – Pre-Chemo Tension (PCT). A particularly intense form of Sunday night blues, this manifests itself in moodiness, irritability, and a tendency to wild and irrational overreaction. Example:

 “We’ve run out of honey”

“What do you mean we’ve run out of honey?! HOW have we run out of honey?? Fine, well isn’t that just kick-you-in-the crotch spit-on-your-neck fantastic? I might as well just check myself into intensive care RIGHT NOW, because that’s where I’m going without the SPECIAL ANTI-BACTERIAL PROPERTIES of the HONEY. There’s no point even eating the porridge if there’s no honey. No one talk to me.” (Door slams)

On bad chemo days I can inadvertently regress to a sullen 90s teenager. But, there are other days, the days when your physical and emotional reserves are spent, when simply showing up feels like too much to ask. When showing up feels like forcing yourself out of the relative respite of the rank trenches, back into the firing line of no-man’s land, and you don’t know how you are going to find within you what it will take to actually walk to the ward and voluntarily subject yourself to another round of this onslaught. Those days are thankfully few and far between, and they are the ones when you definitely need your porridge for breakfast.

Curious and curiouser!

As brutal as chemotherapy is on the body, it can be equally unforgiving on the mind. Whether it is the chemotherapy itself, or the cocktail of drugs to manage the side effects, your brain does not escape unscathed. For someone who hasn’t previously spent a lot of time on mind-altering drugs, I can only assume that this is the equivalent of a ‘very bad trip’.

First there is the ‘chemo-brain’ – only recently recognised as ‘real’ side effect, chemo-brain was discovered through patient crowdsourcing as thousands of breast cancer patients compared their experiences of mental fog and forgetfulness, wondering if it was real or a figment of their imagination. Science is just now starting to catch up, but in the meantime the cancer community have been there, seen the funny side, and worn the t-shirt (“I’ve got chemo brain, what’s your excuse?”). However, as someone who’s always enjoyed the gift of instant recall, this has to be one of the less hilarious things that has ever happened. During chemo I regularly find myself mid-sentence grasping for a word that I know that I know but finding there is nothing there. Blank. Days later I am still trying to remember this word and it simply will not come. Forget mist and watercoloured memories, the corners of my mind have gone distinctly dark. There is simply NOTHING THERE. Help! I have gone from being able to quote every episode of Friends, to not being able to recall that Ross is a ‘palaeontologist’! Why isn’t it there? And will it ever come back? Or am I going to have to start writing words all over my body in order to remember them?!

More frustrating and frightening than this, though, is the transient but deep sense of dissociation that some of the drugs can induce; the feeling that everything around me is somehow not quite real. Time is distorted, and I feel like I am orbiting the sun at a different rate to the rest of the planet. My mind is racing, as though it is on some kind of incomprehensible high speed dubbing, and whoever you are, and whatever you are saying to me, I feel that we are not somehow in sync. I am in a bubble. A giant teacup-shaped bubble, spinning on a revolving carousel, while you are standing still. The lights are jarring, and the noise is roaring but muffled in my ears, and all I can do is sit back and let myself turn. And eventually, as the drugs start to wear off, the spinning starts to slow, and finally – FINALLY – it stops. I can’t really tell you what the last few days have been about, but I am mighty glad to be able to step dizzily off this ride, back into the crowds of normality – until the next treatment. Like I said, mind-altering drugs; really weird trip.

My dear, here we must run as fast as we can, just to stay in place. And if you wish to go anywhere you must run twice as fast as that – Lewis Carroll, Alice in Wonderland

It is the sheer ‘otherness’ of the chemo experience which makes it hard to explain, and even harder to understand. The best analogy I have for what it feels like for me is running a marathon. This is nothing if not an endurance sport. It’s long, it’s monotonous, and it’s unrelenting. It is a fundamentally solitary pursuit. No one can do this for you – though there are plenty of loving supporters who would gladly turn it into a relay if they could. And, like any long distance run, there comes a moment when you don’t think you can go any further; you are running on empty and your body is screaming at you to stop, but you still have about a third of the race left to go. Completing this course is every bit as much about mental toughness as it is about physical fitness. And when you do finally cross the finish line, you look back on the distance you have run, not knowing quite how you have made it, but with a deep sense of pride and relief that you have.

So, it follows, if you are supporting someone having chemo you need to approach it like a marathon supporter. And, as anyone who has dashed frantically from Canary Wharf to Westminster clutching a banner and a bag full of runner paraphernalia will be aware, the role of the marathon supporter is a serious one that requires energy, strategy and total commitment:

1. Get familiar with the route, and make sure you’re spread out well across the course, because there’s nothing worse than getting all your cheers in the first hour and then having to battle on alone for the rest of the race.
2. Help your runner with their ‘playlist’, so they’ve got the equivalent of some soaring 80s anthems to keep them going through the boring bits.
3. When you cheer for them do it really really loud, because sometimes in the midst of it all they might struggle to hear you, and don’t be offended if they don’t always acknowledge the support – they clocked you, and it made the difference, but right now all they have the energy to do is keep their head down and concentrate on the race.
4. Be waiting at the finish line for them with a foil blanket of love and a sturdy shoulder to lean on, because they are going to be physically knackered and emotionally exhausted.
5. Finally, throw yourselves with gusto into the post-race partying when they are ready, because they just had a therapy that didn’t involve any essential oils, and they deserve to celebrate.

Links

From mustard gas to chemo: http://scienceblog.cancerresearchuk.org/2014/08/27/mustard-gas-from-the-great-war-to-frontline-chemotherapy/

Chemo-brain: http://www.cancerresearchuk.org/about-cancer/cancers-in-general/cancer-questions/chemo-brain

Chemotherapy Explained: http://www.macmillan.org.uk/information-and-support/treating/chemotherapy/chemotherapy-explained

References

[1]https://www2.rsna.org/timssnet/media/pressreleases/pr_target.cfm?id=629