In a perfect world, no one would choose a holiday at the Hilton*. Unfortunately, the world is not perfect, so we are frequent flyers at the Hilton. We have a Hilton routine and we are practiced at falling into the rhythm at a moment’s notice. Dave has been holidaying for 10 days so far and is slowly picking up.
Our experiences this week have given me lots of opportunities to think: this is what the Hilton’s all about.
It’s all about sharing a room with three other people. These people are generally old and they have generally lost a few marbles, and sometimes, control of their bladders and bowels as well. They have a tendency to refuse to learn what the call buzzer is for and a penchant for calling out “Nurse!” or “Help!” in a quavery, but surprisingly loud voice throughout the small hours of the night. They are often unsteady on their feet but don’t let their entire lack of balance prevent them from trying to travel to the toilet on their own. Sometimes they topple over and land on top of you on your bed. They also love to watch TV or listen to the radio at a ridiculously high decibel and they are very generous about sharing their germ ridden newspapers with you.
It’s all about hearing the tea trolley coming down the hallway and quickly priming Dave The Patient to sweetly ask for “A bottle of water, two packets of sweet biscuits, a cup of tea, and milk in a separate cup please” for Janette The Visitor (who is technically not allowed to partake of the morning tea offerings).
It’s about gathering to watch the rescue helicopter land, checking out the good-looking pilot and even more good-looking flying doctors, and then watching it take off once their critical cargo has been delivered safely.
It’s about seeing a tomato sauce packet on the food tray and instinctively knowing, beyond a shadow of doubt, without even lifting the lid, that there are hamburger patties for dinner. It’s about enjoying the hospital toast which is unlike any other toast, anywhere else, ever. It’s crispy on the outside but still fluffily moist on the inside and it’s served at room temperature. I have learned to love it and I just don’t feel like a day at the Hilton has really started if I don’t have my hospital toast.
It’s about seeing 6 different doctors and having to recite each and every time what has brought you in for an admission, what medications you take, what you do for work, your marital status, if you have any kids or pets that need looking after etc. etc. ad nauseam. Do they not write any notes? Can they not read? Do they not talk to each other about your status and care?
It’s all about sitting in the foyer one evening having an Italian dinner party, complete with wine, provided by good friends.
It’s about sitting in the same foyer the next morning having Campos coffee with fellow PWCF* and swapping stories – comparing, sharing, learning. It’s about making the nurses come down to find us in the foyer where we’re all sitting to give antibiotics, medications, take observations, ask questions and check blood sugar levels. It’s about me giving an impromptu genetics lesson about the chance of having a kid with CF when a PWCF and a CF carrier get together, or in our case, two PWCF get together.
“So, if you and Dave have a kid together, your kid would definitely…..?”
“Be good-looking and incredibly intelligent? Yes, yes, they would.”
It’s all about finding out how old other PWCF are, because when you have a life expectancy of 40-ish, age plays on your mind a bit.
“So, how old are you Dave?”
“No, really. How old?”
“63. I’m telling you, I’m 63.”
“Yeah, right. Seriously.”
“Ok, I’m actually 49. Scout’s honour.”
“Come on. There is NO WAY you’re 49. You don’t look 49. No way.”
– I pipe up: “And he doesn’t act it!” –
“I am. I’m telling the truth this time. Planning a big bash for my 50th next year. Wanna see my license?”
– Pause while license is examined… –
“Well then, can I get an invite to your big bash?”
It’s about answering silly questions from dodgy nurses over and over and over again.
“Have you had your Creon tablets?”
“No, not yet. I take Creon with food as I need it to digest my food. I’ll have it with dinner.”
“It’s charted for 3pm so you need to take it.”
“You see, the doctors chart Creon for an arbitrary time at an arbitrary dose just so it’s on our list of meds, but they know I’ll have it with food. I’m not having any food right now, at 3pm, so no, I don’t need to take it.”
“Well, that’s what the chart says, so you’d better take it.”
“But it’s for digesting food. And I’m not having any food right now. So, having it now would be pointless. Wouldn’t it?”
“If you won’t take it I’ll have to write down that you declined it.”
– Sigh –
The next day at 3pm:
“Have you had your Creon tablets?”
– Big deep breath, pause, prepare to tell a lie… –
– Sigh –
– It’s easier to lie. –
It’s about bantering with physios for hours on end doing chest clearance. It’s about training up the newbie physios. It’s about wondering why physios are always a good-looking bunch. Always. It’s about knowing when to be a couch potato to gather strength or when to start hitting the gym to prevent your muscles turning into useless pockets of mush.
It’s about having a laugh with the old-timer nurses with hearts of gold. The ones who have known Dave for 24 years and me for 13 years. The ones who include us in the coffee run or Thai take-away order, who track down IV poles with functional wheels and turn a blind eye and let Dave stay in a single room even though he’s not infectious anymore.
It’s about very bizarre things happening. Like a guy lighting up five separate cigarettes in his hospital bed, absolutely refusing not to smoke, swearing at the nurses and then running away from security and leaving the hospital in the middle of the night. Or, like the time a patient was having an anaphylactic shock due to a new medication. The crash cart was dragged out and put into liberal use and every man, woman and their dogs were gathered around trying to stabilise her. The lunch lady arrived and put a lunch tray down on top of the crash cart. When I got up and moved the lunch tray so the doctors could easily access the crash cart, and you know, save someone’s life, I was told off by the lunch lady for touching another patient’s food tray against hospital policy.
It’s about having a patient in the bed next to you desaturating* and needing to leave the room because you have just had a good friend die in the same way and you are floored with distress.
It’s about clearly remembering which bed I was in and which bed Dave was in when we met, or when he had his last sinus surgery, or in my very first admission, or when he had a single room for almost three weeks before he was moved to enable a very sick friend of ours to die in peace.
It’s about having witnessed a bunch of doctors arrive at a neighbour’s bedside and chat for a while. Over the course of the chat, the patient became more and more short of breath and more and more distressed. All of the doctors could not for the life of them work out why, until they suddenly all realised – at exactly the same time – that the senior doctor was standing on the oxygen tubing and cutting off the flow.
It’s about needing a second chest tube inserted in your left lung but having the doctor absolutely convinced it needs to be inserted in your right lung. Then it’s about having a very prolonged and frustrating conversation back and forth, before the doctor embarrassingly realises they have had a very large, and potentially very serious, blonde moment.
It’s about all of these things and so many, many more. It’s about a countless number of admissions that are not fun, no way, but we step up and make the best of it. Again and again and again.
*Hilton = our phrase for “admitted to hospital”.
*PWCF = people with CF.
*desaturating = a condition of very low blood oxygen concentration needing immediate medical intervention to stabilise.