You can read part 1 of Postcards From The Ward here – and you probably should as it’s a lot more fun than part 2.
Let me catch you up…
My Friday nights normally comprise red wine, chocolate, TV, and an 80s playlist; tonight it’s an isolation ward and coughing up blood from my lung. Yes dear reader, that’s the symptom I’ve been dealing with; gross and frightening. If you don’t get how upsetting it is, you haven’t watched enough Grey’s Anatomy. Though with 72 seasons, probably everyone has now watched enough Grey’s Anatomy.
After my discharge a week ago, the bleeding got significantly worse. So I’m back in the ward.
A bronchial artery embolisation has been scheduled for Monday. The procedure carries a small risk – between 1/1,000 and 1/10,000 – of permanent paralysis, so they want to do it under ideal conditions, not over the weekend. The doctor says this several times: they want ideal, weekday conditions.
Yet he has insisted, in his gentle but firm way, on admitting me tonight. He is never alarmist but he gets his message across. ‘I’m not saying this will happen, and I don’t think it will, but sometimes things accelerate dramatically, and we want you to be where we can act quickly.’
I am settled in my room and Craig believes the bleeding, which has punctuated the long wait at admissions, will stop now that I can rest. It seemed to escalate when I became active.
Almost immediately after he leaves I cough up blood for ten minutes. An hour later, for twenty minutes.
He calls to say goodnight. I don’t tell him about the blood.
I cough up blood for forty minutes. It’s everywhere – in my hair, on my gown, in the sheets.
I know some of you like gory details and some don’t, so I’ll say only that the episodes compared to last time have gone from Wolf Creek to Evil Dead (I don’t watch splatter films so I’m relying on Google for this spectrum). The embolisation, that procedure they absolutely did not want to do under emergency conditions? They’re going to do it under emergency conditions today.
Deep breath. Okay, then.
My friend Alex calls. She is the one person I can talk to without worrying about worrying her. She also likes gore, so I spare no gruesomeness as I fill her in. She sounds strange and asks for Craig’s number. Odd time to be planning a double date, I think; but my brain has chosen to participate in this drama in a vague, distant way and I go with it.
The anaesthetic nurse preps me for the procedure and together we wait for the on-call anaesthetist and interventionist radiologist to arrive at the hospital. I ponder the disrupted games of golf for which my lung is to blame on this gorgeous Saturday. The unfulfilled destiny of small hard balls, the hastily discarded checkered pants.
It’s amazing: they will enter my lung via a vein in my thigh. An angiogram has mapped my lung in advance so they know where to go. Like when we used to MapQuest directions and print them out before traveling somewhere unknown. I picture them turning the angiogram this way and that to get their bearings and hope they have a better sense of direction than I do.
I am surprisingly calm as I am wheeled into the procedure room. I take a deep breath and let my body go limp. The nurse tells me the device that’s meant to raise me to the table is not working, so they wonder if I can climb up there myself. I de-limp my body and clamber up, and they are delighted to have a spry patient. I feel inordinately happy that they are happy as the general anaesthesia takes me under.
I wiggle my toes. I can wiggle my toes. Not paralyzed then; cool. It’s about all I can do, though. I’m overwhelmed by fatigue and nausea. Can’t close my eyes or lower the bed to horizontal without the room spinning – and not in a good, that’s probably enough vodka for me kind of way. They give me anti-nausea medication that I’m pretty sure is just a Tic Tac. Well into the night I keep myself upright and awake to brace against the vomitous waves, and every so often, just to check, I wiggle my toes. Hello, little piggies.
After breakfast I feel the urge to cough and I reach for today’s sputum cup. Each day there’s a fresh specimen jar to send to pathology and a new sputum cup for monitoring quantity, consistency, and other choice attributes. How a nurse deals with the cup reveals a lot: one kind of nurse casts a cursory glance to monitor things; the other beelines for the cup, swirls the contents like a fine wine, probably makes mental notes about the terroir and wonders about hints of plum. That second kind of nurse is so in the right profession.
I inspect the firm dark blob, entirely unlike the bright red liquid of recent weeks. I want to believe this transmogrification is a good sign, a harbinger of success. But, for a while now I’ve been studying stoic philosophers like Marcus Aurelius, Seneca, and Epictetus, and I try not to hope, I try not to attach to things outside my control.
A nurse enters and immediately grasps the cup. She peers at the bizarre globule, inspecting it with delighted fascination. Yep, she’s in the right field.
On my previous hospital visit I’d bound out of bed after breakfast each morning. I’d shower, dress, make my bed, neatly fold my hospital gown, and sit ready for the day in the chair with my iPad on the wheeled table. Today, I barely move. I remain a little nauseated, and deeply tired. The thought of standing in the shower for entire minutes is beyond me. I brush my teeth and wash my face, straighten the covers as best I can, and crawl back into bed.
Not even the vanilla custard revives me.
I lie in bed doing nothing, floating in the listlessness.
When I update Alex she confesses she asked for Craig’s number in case I didn’t make it. Unlike me, she is medically astute, and the amount of blood I was coughing up was scaring her.
Slowly it dawns on me that things were pretty, pretty, pretty dire. My doctor and his team probably saved my life.
My doctor arrives. There was no bleeding during the embolisation, he says, so they had to rely on the previous CT scans and bronchoscopy. Therefore they can’t be sure they embolised the correct artery. The fact I’ve not coughed up blood since the procedure is pleasing, and the longer I don’t, the more likely the procedure worked. Now we wait and see.
Uncertainty again. There’s no avoiding it.
They can keep me and monitor me, he says, or I can go home. I am scared to go home because I have become afraid of the blood, especially of the nighttime episodes. The nurses can’t do anything and I don’t call on them anyway, but knowing they are there is comforting.
As usual the staff are fantastic, and I get the feeling they want me to stay longer. Twice I’ve been told I’m the ideal patient, and the conscientious child in me lowers her head to savor the pat.
But there is no real comfort here. Or anywhere. Everywhere I go, there I am, with a lung that may or may not continue to bleed.
I want an answer: the cause is this.
I want certainty: the problem is fixed.
I want reassurance: the bleeding will stop.
I’m not going to get any of these, no matter where I am.
I decide to go home.
Postscript: Five Weeks Later
I see my doctor in his private rooms for my follow-up consultation. I adore this man – he is thorough and kind, he takes his time to explain all my results (lots of images, ew), integrating them with my other health information that he has already reviewed, and to answer all my questions.
The bleeding has not recurred – so we decide to assume the embolisation worked, and in a few weeks I can resume my regular exercise (barre and ballet).
None of my myriad tests show any explanation – so we decide to accept this as one of those odd things, and agree we will follow the same steps if it recurs: hospitalisation and embolisation, though hopefully not under emergency conditions like last time.
I thank him for refusing to give me false assurances. I tell him how in the past few years I have been embracing stoicism, focussing on things under my control (pretty much nothing) and learning to accept the profound uncertainty of everything outside my control (pretty much everything). He tells me this is a really hard thing to do and then he falls silent. We both have moist eyes, a moment of connection between humans, in this small sterile room, where we are playing this made-up game of doctor and patient.
As I leave he says my lingering fatigue is normal, that I’ve been through an ordeal, that people often look anew at their lives after this kind of experience.
I ponder this in the car on the way home. In recent years I have had an intense period of reflection (a whoooole other story) and have been making significant changes. My life is starting to align well with my true values.
Still, a few decisions have become even clearer.
- I’m going to write more on this blog (yes, even though no one reads it), and there’s a book I want to start. My touchstone for everything I want to write is: funny and true.
- I’m going to stop worrying so much about everyone else, to be more honest about how I feel and what I think, to trust others to deal with their own feelings.
- I’m going to buy that Montblanc white and rose gold fountain pen.
Dear friend, don’t wait to cough up blood before you buy yours.
Photo by Alizee Marchand
PS The picture on my Insta is of the rollerball, which is what I originally wanted; but I bought the fountain pen.