I’m writing these notes in the ER blitzed off my tits on Vicodin and synthetic heroin. Outside in the corridor some poor bastard who got crushed by a bowling ball stacking machine is screaming like a baby with Tourette’s.
I should be experiencing compassion but instead I’m feeling disappointed. I’ve been brought up by American TV to expect the stabbed, the gut-shot and the Mafia-kneecapped to be fistfighting with the gangbangers, the crack addicts and the self-mutilating anorexic Goth chicks in ER waiting rooms. Instead there’s just lots of very fat people feeding McDonald’s to even fatter children.
Maybe we should start the story here.This is the tale of a smartarse Brit getting lost in the Philadelphia health system. The highlights include cockroaches, urine-drenched bathrooms, Kafkaesque data chases, a scrotal sac swollen to the size of a football, the horror of the catheter they stick down your c*** (and this is legal — why?) and nightmare compacted faecal matter that was so hard to shift that I collapsed and had to be given oxygen the first time I tried.
Plus more love, affection and staggeringly efficient professionalism from amazing doctors and incredible nurses than you could possibly believe. And more really, really, really great free drugs than you could shake a stick at. That bit I just wrote about the “free drugs”? Total nonsense.
The wife and I are in the elevator in our apartment building when she opens the bill from our insurance company.
“How much?” I giggle. “$51,000,” she snorts. It might as well be 51 gazillion billion bazillion trillion. We both start laughing like hyenas on helium.
Late April 2006 After months of back pain, I’m sitting in my doctor’s office for the results of an abdominal CAT scan.
The doctor and his assistant are nervous — really nervous.
“Growths consistent with cancer,” I’m told. How do I feel?
We’ve just bought a house, signed the contract. X-rays reveal massive amounts of fluid around my lungs caused by dripping cancerous lymph nodes. Cue ER and drugged-up draining. Then a surgeon and half a dozen baby surgeons prod me and we get a date for the surgeon to slash my neck open and take out a lymph node.
We’re let out of our contract by the couple selling the house — the first of many acts of utterly unselfish kindness I will experience. (We really are an OK species.) May 2 It’s a few days before the surgery, and I’m back in the ER, wheezing like an asthmatic geriatric.
More drugs. More draining. A squidgy bag full of Satan’s bloody mary mix. But this time I’m not going home for a long time. The hospital claims me.
I’m in a two-person room. Co-patients come and go — including one poor sod whose entire life has been screwed by a dementedly exotic cancer he caught from a pet parrot. But they all like watching the TV with the volume turned all the way up all day.
The good news is I’m going to be getting my own room. The bad news is it’s the room recently occupied by a just-evicted cussing geriatric, and he’s whizzed all over the bathroom. The place reeks. My wife attempts to use it and runs out screaming when she’s attacked by a giant cockroach.
“Perhaps it’s a former patient,” I muse, referencing the Franz Kafka story. It’s become clear that this is a totally dysfunctional ward — a rest home for nurses who’ve long stopped giving a toss.
They don’t all suck, of course. One of the good nurses asks me how I’m doing. So I tell her about the piss stench and the cockroach and a nurse who just wandered off in an apparent trance halfway through a request for painkillers.
“Oh, you’re so funny!” laughs the good nurse. “No, this place is a total s***hole.”
“S***hole! Ahahahaha!” laughs the nurse, clutching her sides. “You British guys are just so funny!”
Beyond Kafka lies Monty Python.
May 4 It’s time for the biopsy surgery. My first ever. The anaesthesiologist and his team of baby anaesthesiologists question me.
“Have you seen my latest chest X-ray?” I ask.
“What chest X-ray?” they say.
May 5 Back in the Hell Ward, my bags are packed, and my back and recently slashed-open neck are aching like bastards. Eventually we escape and go home. But then, a few days later, a nurse friend checks my lungs out and tells me to go back to the hospital.
I weep. In fact, I bawl my eyes out.
Everybody we know in Britain has offered money to help us to pay our medical bills, convinced that the American health system caters only to the stinking super-rich while the poor are left to rot in diseased piles. I tell my fellow Brits that this is only partly true. They refuse to believe me.
“You know what the real difference between a private health system and a public health system is?” I ask my dad over the phone. “What?”
“F*** all.” This makes him bark like a seal. I think it’s the first time I’ve ever made him laugh. This makes me cry. I’m crying a lot. Partly I’m crying in relief, because after yet another bloody mary mix removal, the hospital moves me to a ward where the bathrooms don’t stink of piss and the nursing staff give an enormous toss. They roll their eyes and smile knowingly when I tell them my Hell Ward war stories.
“We call it the ’hood,” whispers one.
Isn’t that amazing? A hospital so big that it has neighbourhoods, including some where the poor people and really crap service providers are shoved in together.
We’ve decided to bank a sperm sample in case the chemo makes me infertile. But drugged up to the eyeballs, totally knackered and totally emotionally pancaked, I’m utterly unable to masturbate to orgasm. I pull the curtains around the bed, flick open the porn mags and start.
“Time for your tests!” chirps a nurse, ripping the curtains aside.
I quickly cover up my semi-tumescent todger and hugely swollen testicles. The interruptions continue. The old bloke in the next bed — obviously a man of the world — jacks up the TV to drown out the sound of my desperate grunting. For the rest of the morning he’ll stare at me with a mixture of pity and horror. The specimen jar remains empty. I think of asking him to fill it for me. But I don’t.
May 10 It’s my birthday! It’s also the day they drill into my backside and suck out the insides of my bum-bone so they can do a bone-marrow biopsy. Top fun.
May 13 It’s chemo time.
A brew of three super-deadly cancerkilling death chemicals today. The last one nearly kills me.
First come the shakes (cue frightened staff furiously pumping in life-saving drugs), then vomiting, then sleep — complete with the insane heart rate and panic-breathing of a wolf-chased doe. I’m dying.
I wake up in intensive care, and these bastards — there’s no other word for them — are twisting white-hot corkscrews into my neck, chest and arms so they can pump me full of the magic juju juice. They’re just trying to save my life.
Which they do — leaving me to spend all night hallucinating grim-looking Meat Loaf-video death-biker metaphors every time I close my eyes.
Nearly dying sucks. But not as much as being in intensive care. Being held prisoner by loads of wires really sucks. Having a tube stuck down your c*** really sucks and really hurts. But having to s*** in a bedpan is downright humiliating.
After three days the top half of my body resembles an emaciated Jesus — complete with beard, mad staring eyes and the belief that I can communicate directly with God. The bottom half of my body is like an elephant.
All the life-saving fluid I’ve had pumped into me has gathered in my legs. All my hard-won gym muscle has melted away.
I have gruesome bedsores where my hideously swollen scrotal sack is rubbing against my hideously swollen thighs. I have a tube sticking out of my ridiculously shrivelled c*** and am in excruciating agony every time I pee. I stink like a long-term homeless person’s sneakers and, oh yeah, I’m constipated to the point of insanity.
The good news — the pornographers have been lying to us. Not all nurses are nymphos desperate to jump into bed with any and all male patients. This comes as a massive relief.
May 19 I once again escape the hospital. I’m emaciated, I’ve got a mad beard and nutcase hair. I’m as weak as a ricketsstricken kitten.
The chemo has severely screwed with my testosterone levels. As a result, I sound like my mother and cry at absolutely everything. My fluid-filled legs look like telephone poles, so I sleep with my feet up.
What happens next is horrific.
The fluid flows into my already swollen ball bag, making it enormous. It gets so big that I have to carry my balls around the house in my hands when I’m not wearing underpants. Seriously.
And when the fluid drains out of your scrotal sac, guess where it goes next? That’s right, for about a week I sport a huge, fluid-filled fringe under the head of my penis, making it look like some weird skinhead Gila-lizard from Hell. I tell every male I meet about this.
They are all, without exception, appalled. One says: “Cancer victim or not, if you don’t shut the f*** up right now I’m going to punch you.”
• Steven Wells had a further type of lymphoma diagnosed earlier this year and died on June 23. This is an edited extract from his columns for the Philadelphia Weekly, philadelphiaweekly.com.
The fee for this article was donated to the Leukemia & Lymphoma Society (leukemia-lymphoma.org) at his family’s request.
