Just as you think it’s safe to go back in the water….I came into A&E today with a chest infection and I’m kept in for a suspected heart attack! Rubbish. I’m fine. On these drugs I am supposed to report anything more than a minor sore throat. Paris and a few social occasions proved a bit much and so I was trying to rest up at home (painting, writing, cleaning, not resting)…but decided after a rough night that it would be sensible. I mentioned that I had been very tired and struggling a bit with my energy and getting around. Some heaviness on the chest and tingling in the arms. Heavy legs. You may remember my shock discovery a couple of months into treatment that I have a congenital heart defect. And that my aortic valve is quadricuspic. Something only common to extra sparkly unicorns. And today they found some evidence of possible myocarditis. Perhaps the beauty and exuberance of Paris and jazz made my heart explode with joy. Or, more plausibly, the charming cocktail of the four drugs I’m on can cause stress to the heart but I prefer my version. So I am staying in Charing Cross spa hotel overnight to see cardiology and have a few more tests tomorrow. I am cursing as I couldn’t find my AirPod case so have no means of shutting out my fellow patients. Let us see what the night brings…More later…let’s hope no one brings their late night corn snacks this time.
5pm. I try to find humour whenever I am at A&E. I’ve been here about 5 hours and the only thing that has made me laugh is a confusion of Angelas (they lost me for a bit as I was asleep with my headphones in and there are three Angelas in the waiting room.) And an elderly black man who pretended to be called Monica so they would let him go home. I pointed out that this is a risky strategy as he has no idea what Monica is being treated for and we got the giggles.
6.06pm. No one fed me and even the lure of my own lazy boy chair could not keep me there. Have escaped to buy wired headphones, eye mask and wax earplugs. Buying emergency chicken teryaki from my favourite Japanese place across the road. This has cheered me up no end. If you spend enough time in hospitals as I do you get to make up your own rules. I am finding the loopholes. Hopefully they will let me back in. Currently wandering around Hammersmith like an escaped convict with tell tale red plastic wristband grinning from ear to ear and swinging my fancy dinner.
19.06 I have caused havoc in the same day emergency ward by telling others who are waiting to stay the night that I was allowed out to get food. We have bonded over this secret knowledge and the sharing of my box of new wax earplugs. Several of the people in the comfy lazy boy chairs are old hands here. I am not sure how I have joined this elite but I whinged about the hard chairs in the waiting room being hard on spinal tumours. Cancer tax. Me and the overnighters discuss that as long as we have a toothbrush and toothpaste, something to sleep in, earplugs, maybe an eye mask and headphones we are happy. I have discovered I am not the only one who comes with overnight kit ready. The evening staff have arrived and I am slipping into passive patient mode. I listen to a podcast about breathwork and snore myself into oblivion.
22.08 I finally make it to a ward somewhere in the bowels of the emergency department so that the cardiologist can see why my troponin levels are high and rising and check if there is anything going on with this big old heart of mine. Some days it feels ready to burst but I think that’s just an excess of feeling. They tried to put me back in the A&E waiting room earlier as same day emergency care was closing for the night but I resisted on the basis of risk. I tell them I an neutropenic and it would introduce unnecessary risk for me and I may as well go home. My Jedi mind games work and they let me stay in my lazyboy chair until it’s time, transporting me out in a wheelchair to get me a bed.
On my arrival on the ward I experience an extraordinary moment of circularity. The junior doctor who was my GP at the end of last year is here on his final placement seeing to a patient in the next bed. He told me he was coming to Charing Cross to work in ITU so I’d been half expecting to bump into him at some point as I am here at least three times a week. A truly lovely young man who was persistent and caring and curious enough to chase down my weird blood results and keep suggesting new lines of enquiry. I knew something wasn’t right but I couldn’t say exactly what. He knew it too. A nasty feeling. Some mild breathing problems. A heaviness. My poetic descriptions probably didn’t help but what else do we have? I’d been paying for private scans from the fanny up (this is technical terminology) but it would have taken me a long time and a lot of imagination to get as far as a lung scan by myself. He encouraged me to come back into the NHS so they could follow through. And he listened and he believed me when I said I knew something was wrong and he’d call me on a Friday night with a new theory to test. Eventually he sent me to the rapid access chest clinic at St Mary’s and they sent me for the cardio angiogram where they found my lung tumour as an incidental pickup. And tonight I had the chance to tell him what happened next. And more importantly to thank him for indirectly but quite definitely saving my life. When I was first diagnosed I was angry that my cancer had been missed for so long but now I see how hard it was to spot. I was largely asymptomatic and still am. I just needed someone to listen. And he was listening beyond the words I found to articulate my pain and my distress. That’s an amazing skill in itself.
So Dr TC if you are reading this (as directed!) …you did that. My three kids might not have a mother if it weren’t for your incredible compassion and persistence. You have no idea how empowering it was to be taken seriously. And when you tell me you are probably leaving the NHS I find it really, really tragic. Not enough training positions for junior doctors. For someone that good and that committed? The NHS is brilliant and broken. I’ve worked in talent development long enough to know what a waste this is. There is not enough of anything it seems. He’s finding me a pillow as they are in short supply. Please don’t leave the profession I say. You are brilliant. And you saved my life. Thank you. How often do we get to say that? To really tell someone what they have done for us and express our heartfelt gratitude.
I don’t think there is anything wrong with my heart today. I think I was just brought here so I could tell him that. From the heart. Don’t leave.
Breathe 
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