Mission Impossible

It’s been a bad week so far. And it’s only Tuesday. Maybe the worst week since my diagnosis. I’m on my second trip to A&E in three days, coinciding unfortunately with my family being away. Last night, on my fourth day of extreme side effects from the drugs and persistent weakness, I felt more lost than ever. I don’t like feeling weak and I am stubborn about doing things for myself. It’s always a difficult call knowing whether to ‘turn yourself in’. I’m trying not to see it as a sign of weakness. Just the reporting of symptoms. Two days ago in the hospital my white blood cell count was low but holding. Just. My neutrophils, a type of white blood cell that fights infection had dropped from 4 to 2 to 1.3. Around 1 it gets very dangerous and you have something called neutropenia. Ok until you get an infection. The oncology team drill into you when you start these drugs that you must report to A&E or acute oncology if you have any sort of fever or a sore throat. So I diligently report but each time I do so and if it’s fine I feel like I am overreacting or wasting their time. They always assure me I am not and to do it again. After my first visit to A&E I headed straight to my dad’s in Surrey so someone could look after me. It was a relief to be home and be around trees and fresh air. I slept a lot. Then yesterday I woke up mid afternoon to get some water and determined to go for a walk. Out of the blue I had another bad episode where my stomach burned with terrible cramps I can only describe as close to the pain of birth contractions quickly followed by a feeling of the blood burning throughout my body, I dropped to my knees in a cold sweat. Exactly the same order of things as when I was with my doctor friend on Brentford high street. Then I lost it from every opening and collapsed back into bed. Fun huh? I recovered a bit after about 20 minutes but could barely move.

Needless to say it sucks arse. Just pills I thought. This sounds easy. But what pills. Like last time the attack came a few days after getting very dehydrated in the sun. So l I call the oncology emergency line like I’m supposed to. The rather fierce nurse told me to come in and I did not. Risk of kidney or liver damage. Stupid and irresponsible I know but I was in the countryside with my dad and it was just too much effort at 8pm on a bank holiday Monday and I was so weak. So I holed up watching the rest of Zero Day – a truly excellent limited series with an all-star cast. There is nothing like a near future disaster conspiracy to make you feel better. My dad drove me to the garage and we bought all the coconut water they had and I spent the evening guzzling it. It’s supposed to be good for rehydration. In the absence of a pharmacy being open for rehydration salts the best I could do.

This morning, after a feverish night I still felt weak as if my legs would hardly carry me but I forced myself get on the train and made it back to Charing Cross Hospital. My dad had kindly offered to drive me but it wasn’t worth the three hour round trip for him and the train was fine. I arrived to the welcome arms of the war zone that is a central London A&E. The irony being you have to walk into the single most dangerous place you can visit with neutropenia to save yourself. I politely refused to sit in the waiting room as there were people vomiting. If you say the magic words at reception you get a gold pass (along with evil looks from the rest of the waiting room). ‘I’m an oncology patient and I have low neutrophils.’ They appreciate it’s dangerous so they let me stand in a corridor and whisked me through triage. The goal is to make it to a side room in under ten minutes and lie down again. Full marks NHS but it does feel like running the gauntlet every time I call the emergency oncology line and they say the dreaded works ‘acute oncology is full’. I feel like everyone in the emergency department is on ‘fly time’ (I think this cultural reference is from ‘Cloudy with a chance of meatballs’ where they have a fascinating theory that flies operate on a different sort of time where we seem impossibly slow that’s why we are largely unsuccessful at swatting them.) The nurses here are on super fly time and everyone is speaking very fast. By comparison I seem to be in slow motion and a bit confused. I have to ask them to slow down. Am I blurry? I feel like I have to do a good job of seeming suitably unwell and linguistically accurate at the same time. They just see a person presenting with words. All you have is your description and to a degree you have to manage your performance and be clear. They keep telling me I look too well. Too well for what? They say where is your tumour and I say which one there are seven! I have a tan, I smile a lot and make conversation because I am interested in people. This is not what ill people look like or do apparently. But why do I feel like I have to pass a test and fit their idea of sick to be admitted?

Each time I’ve come here it’s a race to bag a cubicle and a game of ‘stand right there, don’t move’ while your triage nurse grabs it quick before someone else does. I play along. Once I’m in cubicle 6 the usual round of obs and bloods begin. I have to stay alert enough to tell them I am allergic to Tegederm, the thin skin like tape that holds down the cannular. Sometimes you get someone a bit pissy who asks how I suggest they do it instead. Which is kind of their problem but I do at least know there are alternatives now. And I am on repeat with the information that I can’t have blood pressure or bloods taken from the left because of previous lymphodema from the last cancer. I feel like an old hand. They ask about my chest pain and I proudly tell them about recent investigations into my quadricuspic aortic valve. Most of them correct me and say ‘tricuspic’ but I ask them to look it up. They’ve never heard of it. One nurse does that and discovers that 0.013 of the population have this oddity. He says I am special and have something extra about me. I agree with him.

By 1pm I realise I’ve spent a few hours lightly dozing and waking myself up snoring. I listen to the sounds of the ward. It is a flurry of activity. There are a lot of police here and from my earwigging it seems they had a violent patient just leave my cubicle. The police are interviewing the nurses about the incidents that led up to him being restrained and removed. Mid story they decide to move me to a different cubicle in my bed. As they wheel me past I am dumped in the corridor for a minute in the middle of the action while they sort another cubicle and I make them laugh by requesting to be left with the handsome policeman because I am enjoying his story and want to know how it ends. He promises to come by and tell me later. I’m still waiting.

Cubicle 14. 2pm. I seem to have an indefinite capacity to nap and keep being comically woken up by doctors and nurses and dinner orders. For some reason I laugh whenever I am woken up as if I shouldn’t be asleep. I want to put my headphones in but the noise cancelling is so good that people sneak up and take me by surprise. I am particularly pleased with myself for remembering to make two gluten free cheese and cucumber sandwiches before I left the house and brought the rest of the coconut water because it’s hard to get something to eat once you’re admitted. I think they will send me home as none of my distress shows up in the bloods. My neutrophils have dropped again but still not at 1. So am I overreacting? I have no idea but it’s not very comforting to have extreme symptoms and be told nothing is wrong. I could barely stand for two days. It will be nice to go home but it’s reassuring to be here for now.

Over the tannoy someone announces that they are about to begin some sort of emergency simulation. With us here??? Maybe as a result of the Liverpool incident yesterday I wonder. The simulation appears to be coded to avoid patient concern with all staff announcements over like ‘Mrs Brown’s in the Disney Room’. Really?? Well I’m the Queen of freaking Narnia and it’s freezing in here. When Mrs Brown’s done her business in Disneyland could someone please discharge me!?

3pm they discharge and I walk back to Hammersmith in the rain in my flipflops. I survived another trip. I make it home, have a bath and sleep for four hours straight unsure where I am when I wake up but I feel a lot better. Like my upturned ship has flipped back over. I make it out of the house to my favourite new place, the Everyman Cinema to see Mission Impossible. It deserves to be seen in a good cinema with decent sound. What a movie. Perfectly executed and a fitting end to an amazing franchise. There are moments in it where I empathise with Ethan Hunt and I feel like I am Tom Cruise on some crazy mission where the odds are pretty slim. He makes it through fire and ice and saves the planet from an evil AI singularity. Sorry about the spoiler but did you think it would end any other way?

Four days to hell and back through fire and ice. The final words of the movie are beautiful. I close off this crappy episode with Luther’s speech. Sometimes drinking a lot of water, eating clean food and soaking in a dose of art, culture or entertainment that moves the soul is all we need to set us right and to give us hope. Forgive me for going a little mushy and putting my faith in cinema. Sometimes the simple things are the best cures we’ve got.

‘Hello, brother. If you’re listening to this, the world is still here and so are you. For the record, I never had a moment of doubt. I knew you’d find a way. You always do. I hope, in time, you can see this life is not some quirk of fate. This was your calling. Your destiny. A destiny that touches every living thing. Like it or not, we are masters of our fate. Nothing is written. And our cause, however righteous, pales in comparison to the impact of our effect. Any hope for a better future comes from willing that future into being. A future reflecting the measure of good within ourselves. And all that is good inside us is measured by the good we do for others. We all share the same fate — the same future. The sum of our infinite choices. One such future is built on kindness, trust, and mutual understanding, should we choose to accept it. Driving without question towards a light we cannot see. Not just for those we hold close, but for those we’ll never meet.