Chemoversary

SUBJECT: You can’t mistake my oncology
Hello!
This is a bit out of the blue, but I just wanted to let you know that I’ve been in hospital for the last two weeks having loads of tests after I did a comedy faint in the street on my way to work.
The upshot of them all is that they’ve found a malignant tumour in my bowel, so I’ve got to start having chemo for that on November 5th. I’m being discharged today, so I’ll get the rest of my treatment as an outpatient.
Anyway, it would be great to catch up with you at some point. I promise to keep the cancer chat to an absolute minimum, or possibly wail constantly about the unfairness of it all throughout — I haven’t decided yet.
Hope all is well with you!
Paul x
  • WARNING! This story contains an graphic image of my face with a really, really unpleasant rash on it that some readers may find hilarious.

Acid

It’s November 5th 2012, and I’ve arrived at the day unit for the first of six cycles of oxaliplatin with fluorocil (5FU) and folinic acid chemotherapy — FOLFOX to its friends. The word “acid” doesn’t exactly fill me with joy. It seems like a particularly sick joke that, just when your body is so ravaged that it almost gives up the ghost entirely, the only thing that can fix it is a massive dose of poison every two weeks for six months. But that’s how it has to be, so I just get on with it.

The fact that I’m starting this scorched earth treatment on Bonfire Night (well, Bonfire Day really, but that’s not a thing) strikes me as funny for some reason. But nobody else seems to be laughing as we all sit in the waiting room to be taken through by the nurse who will be looking after us for the day. I’ve already been shown around the unit and told a bit about what to expect, but as I walk through I realise I haven’t actually got much of a clue. This is probably just as well .

Bumbag

The chemo fun doesn’t end for me when I walk out of the ward at the end of a gruelling day — oh no! I’m packed off with a further, slow-release cocktail that’s pumped into me over the next three days by means of a deflating balloon. Clever, eh? Luckily, they don’t leave you wandering around with the thing in your hands, like an Ood from Doctor Who, so I am issued with a stylish chemotherapy bumbag attached to a bright blue belt, which becomes my constant companion as I try to go about my normal business. As the months pass, I become more bold, and on one occasion I even take my chemo with me to the pub and proceed to get absolutely hammered. Even better, I start to get better and put on weight, and I’m delighted to have to let the belt out several times — something I wouldn’t usually be very happy about AT ALL.

Beefy drink

“Would you like a cup of tea, my love?” asks the lovely volunteer from the hospital’s Friends charity. “Ooh, yes please,” I reply. My boyfriend’s ears prick up and he looks on, hopefully. “You can’t have one,” she says, sternly. “They’re for patients only.”

She brings the tea. It’s from a machine, and it’s disgusting, so I always politely decline when she asks after that, which she takes very personally so I feel guilty and it’s all just a BIG MESS. Later, I notice that the machine offers a “beefy drink” option that has been scribbled out with blue marker, and wonder what calamity caused it to be taken off the menu.

The Friends volunteers are amazing, though, dispensing tea and sandwiches and cakes and smiles all day. But no beefy drinks.

Fuck your Skype call

Chemo days can be long and boring, and people deal with that in their own special way. Some read, some fiddle with phones or watch stuff on their iPads, and others are so utterly knackered that all they can do is sleep — especially towards the end of a session.

One woman, however, has decided she’s not going to let a pesky all-day hospital appointment get in the way of her VERY IMPORTANT WORK, and is channelling Phoebe in that that “What If” episode of Friends by furiously typing and having endless loud, annoying Skype calls about business and spreadsheets and targets and what-have-you.

If you’re ever unfortunate enough to find yourself in a chemo ward, please do not do this because everyone else there will think you’re a massive arsehole. As someone with cancer on the outside world, you will be endlessly indulged because you’re the sick one, but in here we’re all on a level playing field, and we’re seriously thinking about staggering over there and vomiting on your laptop.

Giant telly

“We don’t have your chemo ready, I’m afraid,” said the nurse, after I’d valiantly struggled to drag my banjaxed body to the hospital for the 9am kick-off time. “In fact, we don’t have any at all, and they can’t tell us when it’ll be here.”

Lots of different things can happen in the pharmacy while they’re working hard to make up the drugs, and obviously they have to be just right before they can be administered. But still, everyone’s a bit fed up, as we know a long day is going to be even longer, so we sit around, bored, just waiting.

This is dangerous for me because my mind turns to the inadequacies of my quite small telly and how, as I’m spending so much time slumped in front of it, it would be great to have a big, shiny, expensive new one. I whip out my phone and have one on order before the drugs arrive from the pharmacy, and am happily plonked in front of it two days later, watching reruns of Hi-De-Hi and eating crisps. Isn’t the NHS marvellous?

Plucky chemo pal

Every time someone in a soap opera gets cancer, they inevitably make a plucky chemo pal on their first hospital visit. This person will dispense wisdom and kindness until, one day, they die unexpectedly, leaving your favourite character to dwell on their own, desperate situation. With that in mind, I resolve that I won’t make any plucky chemo pals — I am, after all, the star of this particular soap, and wouldn’t want to jinx anyone. And they’re the star of their soap, so if I’m their plucky chemo pal, I’ll be the one who bites it. NO THANKS.

Frustrations

Eyelashes

In addition to the chemotherapy, I have been prescribed an enzyme treatment called Cetuximab . The two are apparently very effective when administered together, so I get a big bag of that pumped into me in the mornings as an amuse-bouche, with the chemo after lunch.

“The treatment does have some unpleasant side-effects, though,” my consultant says. “You’ll probably develop a very severe rash all over your head and neck, along with mouth ulcers and nosebleed,” he warns me. “Oh fan-bloody-tastic,” I think. “I look terrible already, a very severe rash isn’t exactly going to help matters.”

Then he pauses. “And then, of course, there are the eyelashes.” OK, now I’m interested. “Yes,” he continues, “you’re likely to grow very long, curly eyelashes.” My boyfriend laughs, nervously. “Like a cow’s?” he suggests.

I think this sounds great, if slightly ridiculous, and keenly await their arrival, but months pass and they’re nowhere to be seen. Then, one day, someone at work looks at me a bit funny and asks me if I’ve been curling my eyelashes, and I could punch the air with joy, if only I had the strength to lift my arm. My new high-volume curly brushes soon become quite the talking point, and are the envy of my female friends, who regularly pay a lot of money to achieve a similar look. I even start fluttering them.

Eventually, they get a bit out control and grow so long that they end up reaching my eyebrows. With a heavy heart (not to mention heavy eyelids) I ask my mum to give them a much-needed trim, knowing that I will probably never again have such long, lustrous lashes — not without a lot of help from Maybelline.

Ham and mustard sandwich

My treatment has totally ruined my sense of taste, and I find myself craving food with a strong flavour. I start eating ham and mustard sandwiches, even though I’ve always hated mustard, just because they taste of something. Unfortunately, I had forgotten the wise words of my friend James, who advised me to consume nothing but strawberry milkshakes for the duration, because they taste as good coming back up as they do going down. Sure enough, the ham and mustard sandwiches inevitably return to haunt me by the end of the day. I’ve not had one since.

Mr & Mrs Pong

Mrs Pong is a tiny, angry woman of about 60, and she is not happy. Everyone in the chemo ward is allocated a small bay upon arrival, containing a large, comfy chair for the patient, a smaller chair for their visitors, and assorted monitors and stands. Some bays are much fancier than others, and there is great competition for the best spots.

Mrs Pong enters, surveys her designated bay, screws up her face and calls over a nurse. A different bay is allocated, right next to mine, and Mrs Pong is placated — briefly. Soon, though, the unlucky nurse is called back and ordered to assist Mr Pong in moving the chair to a sunnier position. Then she decides the machinery is getting in the way, so that has to be rearranged as well. After that, she remarks that the smaller chair would be much better on the other side of the large one. And so it goes on for about half an hour.

All this is making an almighty racket, and I have bloody cancer so I’m already in a bit of a bad mood frankly. I momentarily consider shouting over to Mrs Pong to belt up and sit down, but think better of it. Finally, Mrs Pong takes her seat, and Mr Pong settles in beside her. The nurse returns and, to my surprise, hooks Mr Pong up to the IV, ready to begin his treatment.

My boyfriend and I agree that we love Mrs Pong.

‘Tler!

I text my boyfriend, who is sitting right beside me.

“Have you seen who that is over there?” I ask. He looks over and immediately recognises an actor from a 1980s sitcom that we were both big fans of, sitting in the big chair having various needles jabbed into his arm. We’re simultaneously excited at the appearance of this unexpected celebrity guest, and sad to see him there. I think about going over to say hello, but it seems a bit weird and inappropriate, so instead I just stare at him while grinning wildly for several hours, which is obviously much better. Some months later, I’m greatly cheered to read that he’s back on stage, playing the Wizard in Wicked.

(Sam Kelly, who played Captain Hans Geering in ‘Allo ‘Allo, sadly died on 14 June 2014)

Face off

The main side-effect most people associate with cancer treatment is all your hair falling out, and I’m relieved to be told early on that this is unlikely to happen on my particular regime. That’s not to say there wouldn’t be any side-effects though — and the amazing, long eyelashes were the only ones that could be described as remotely glamorous. Much more debilitating is the horrific rash that develops all over my head, neck and chest. I look like I’ve had my head dunked in a deep fat fryer, like Lisa Faulkner in that episode of Spooks, and on one occasion actually make a small child cry in the street at the mere sight of me. If you’re ever unfortunate enough to end up with a face that looks like it’s been put through a boil wash, I strongly recommend the regular application of Aveeno lotion, and possibly putting a paper bag over your head, just to be on the safe side.

Romance

My chemo has now lasted almost half a year, and my amazing boyfriend has been resolutely at my side throughout. He’s cancelled work, given up time with friends, and generally turned his own life upside-down to make sure that I don’t have to endure a second of this on my own. As I sit there in my big chair, I’m not exactly sparkling company, and as time wears on I’m so shattered that I spend most of the day either sleeping or being sick. I tell him I wouldn’t mind if he didn’t come along to every appointment, and he responds that it’s not even up for discussion — he’s going to be there, come what may.

As I nod off yet again, I realise how lucky I am to have him, especially as we only met six months before all this started. Having cancer is a bruising and exhausting process, and he’s a cross between a PA and a bodyguard, making sure I’m where I need to be and that I’m shielded from anything that might make things even more difficult. But, crazy as this may sound, it’s also pretty romantic. As horrendous an experience as it’s been for both of us, it’s defined our relationship in a really positive way — we’re kinder and more thoughtful than I suspect we would have been in other circumstances, and have a bond that is unbreakable.

Not all superheroes wear capes — mine is usually in skinny chinos, checked shirt and a blazer. “I always dress like this to come to the hospital,” he confides one day, “because the staff in the Starbucks assume I’m a doctor and give me 20% off.”

That’s my boy.

Friends reunited

Despite my earlier insistence that I wouldn’t be making any plucky chemo pals, I end up on nodding terms with most of the people who’re in the clinic or the ward on the same day as me every week. It’s a strange kind of fellowship — people of all ages and backgrounds, chucked together in a big room together every week to go through one of the most harrowing, personal and intimate experiences they’ll ever endure. At first, I feel anxious if I don’t spot any of my “gang”, but I soon realise there’s a lot of tedious stuff that can go wrong that means schedules and treatments change. Still, there are three or four women who I seem to see most often, and we often have a little chat about how things are going, and life in general.

Eventually, my chemotherapy comes to an end and I move on to daily radiotherapy sessions. A while later, I’m back in the clinic after quite a long break to hear how effective all the treatment has been. My ladies are there, and all thrilled to see me. It was only then that it occurred to me how a familiar face suddenly vanishing might be massively unsettling — anything could have happened to me, and when you’re all in it together you feel everyone’s setbacks almost as much as you do your own.

“You look so well,” coos one of the ladies, delightedly. In any other circumstances, she’d have got THE LOOK, because everyone knows “well” means “fat”. But today I’m thrilled that a sighting of me, now bulging out of one my pre-treatment shirts, has made her day.

She looks at me intently. “Life,” she says. “That’s why we go through all this. Life is the only reason.”

Wherever she is, I hope she’s living it.

The final victory