Death and the Elephant
Ever since I was 11 years old I have vowed to keep a diary. I am 48 now. One day I am going to do it. It takes discipline and clarity plus the ability to be properly open and honest. On second thoughts, maybe it’s not for me! Twenty years ago, in the period I was ill, I didn’t keep an actual diary but I did process my thoughts in a periodical and methodical way. I think it helped me to experience the detail of the moment in the moment, however mad or hateful it was. Not to drift numbly through this experience, in other words, but to try to experience it to the max. After all, if I survive, I might end up writing a book about all this. Stranger things have happened. So whilst I didn’t write down the following chemo experiences at the time, it reads in my head as if I did so it’s only fair to share them with you in a first person, present tense 1995 kind of a way:
1) Today is Chemo day. I slept well last night. Like a child on Xmas eve. Excited about going to sleep in order to wake up to get his presents but with a knotted feeling of fear about the possibility of his presents being shit. Although I am not sure a seven year would have quite so much insight about his inner psychological make up.
2) Today is Chemo day. I try to open my eyes but they seem to be glued together. As I wrestle with my eyelids, I notice that I can’t really breathe. I have a granite bowling ball lodged in the back of my throat forcing down on me every time I try to open my larynx. My skin feels like it has turned itself inside out. My body is ganging up on me. I am lying in an Olympic pool of sweat.
3) Today is Chemo day. I might just lie here quite still forever. If I don’t move, try not to breathe and don’t try to open my eyes, all this might disappear. All this. Not just this. This now. But. ALL THIS. And up to now I have been dealing really well with all this.
· I have made countless bad cancer jokes about all this.
· I have had lots of hats bought for me, to cover the side effects of all this.
· I have continually stuck two fingers up at all this.
· A fucking breeze. Was. All this.
Until all this.
4) Today is Chemo day. As I lie here motionless, my heart is beating out of my chest. I know that all this is just the beginning. I know that the road ahead is way longer than I will allow myself to imagine.
5) Today is Chemo day. As I lie here motionless, my whole body sweats and shakes in equal measure. I may as well have stepped onto a mine. There is no escape from the reality of all this.
6) Today is Chemo day. I need a goal today. I need something to keep me going. My chemo appointment is at 10am. The casino opens at 2pm. If all goes swimmingly, I might make it to the blackjack table by 3? I will have only lost an hour of proper playing time. What a beautiful reward that will be. My breathlessness as a result of having non-Hodgkin’s lymphoma between my lungs is only appeased when I am in my blackjack bubble. It’s replaced by another kind of breathlessness. The breathlessness of adrenaline, hope, fear and self disgust. Mmm, now that’s a juicy nourishing cocktail to savour.
7) Today is Chemo day. I haul myself out of bed. I do my best to ignore the gambling monster slamming its fist in my face constantly. It hates being ignored. But I have another mistress today. I launch myself into some ill-fitting clothes and eventually make it to the Royal Marsden in one piece. Sweating profusely like someone with cancer, but pretty much in one piece. The first nurse I see doesn’t quite manage to conceal her ‘oh fuck, he looks like shit’ look. She sends me down for my ‘bloods’ straight away. The same woman always takes my blood. She never smiles. She always sighs. Loud and long sighs. She taps and prods and anaesthetizes and pricks and pulls and labels with steely cold efficiency. I am used to it by now. I quite like it in a perverse kind of way. This is no time for needle phobia. If you have been given a cancer diagnosis, a few pricks are the least of your worries (stop it!).
8)Today is Chemo day. I am sitting in the waiting room. I am waiting (that’s what you do in waiting rooms) to see the consultant before embarking on my third course of chemo. Everything seems to be taking a slow motion amount of time today. My skin throbs and sweats. My head spins. My world’s in a blur. I endeavour to read something to pass the time but every time I try focusing on an individual word, it leaps off the page and pulsates
around the room, taunting me and goading me to catch it and nail it down. I don’t have the focus or the desire to even begin to try to return it to its rightful place. The best I can do is just look at the weird glossy pictures of the obligatory hospital Hello magazine type things. Or OK? Er, right now, NO.
Seconds and minutes hang around like they are going out of fashion.
9) Today is Chemo day. Eventually, the junior oncology blah blah comes and sits down next to me and as gently as she possibly can muster tells me that the reason I feel fucked is because I am fucked and the chemo routine I have been having is just not working and the dark shadow between my lungs has decided to grow rather than shrink and they need to attend to this right now and the only way they can do that is by admitting me right now in order to work out how to reverse the situation and there isn’t a minute to waste and my immune system is in serious danger of shutting down completely and if that happens then it could be very serious very serious indeed and there really is no time to waste and would I like to call someone to fetch some things for me and If I just wait here she will get a porter and a nurse to take me to a ward and she or one of her colleagues will be down to see me in the ward later and not to worry because this is what happens at the beginning of chemo to some degree it’s trial and error and they need to learn what works and what doesn’t work with this particular case and they can only do that by monitoring me and the situation and that I am likely to be in hospital for no more than ten days and by then they will be sure to have found a cocktail more suited to my needs by then and I will just go and find that nurse to look after you.
Now, to be fair, she did talk slightly slower than that. She did take one or two breaths. She was looking me in the eye when she was telling me this. She was really gentle and seemingly caring. She delivered the news like it was fresh just for me rather than just something she has delivered to countless patients this week. I was nodding like an ever nodding thing and doing a bad impression of someone who was taking all of this in.
It begins to creep up in me during the bit where she is talking about my immune system. It slowly fills me up and fills me up till I am fit to completely fracture. And the straw that finally breaks cancer boy’s back isn’t the fucked immune system or the growing mass inside me or the serious danger.
It’s the ten days.
· Ten days of hospital.
· Ten days of incarceration.
· Ten days without gambling satiation.
· Ten days of being reminded of the reality of this right now situation.
· Ten days of not taking the first show I have ever directed to the Edinburgh Festival. Something I know absolutely has to happen. For my sanity. For my soul. Saying no to Edinburgh would be like the future slamming the door in my swollen face. An acceptance that this is my future now. And believe me, I am not ready for this.
10) Today is Chemo day. I sit in a corridor in a hospital in south London and shake my head and mumble and shake my head and sob. I am grieving for my now. I am grieving for my present.
The oncologist is more than adamant that any course of action other than being admitted would be dangerous for my health.
I am not an oncologist but I know that isn’t true. Through my crazed hysteria I have the clarity to see that the symbolism of letting go so easily will haunt me for the rest of my illness. And that won’t be helpful or healthy. I know I have to fight this. Just this once. I know that I am right. I know that going to Edinburgh is much healthier right now than staying in hospital.
I know I am right. Know I am right. Know I am. Won’t budge. Won’t budge. Won’t budge. Won’t. Can’t.
10) Today is Chemo day. It takes a while, but there comes a point when the nurse and the oncologist look at each other and agree to my demands. They know what has to be done. They go into situation management mode:
My medical contract
a) Accommodate his need to get to Edinburgh
b) Make sure he doesn’t die along the way.
And the doctors and nurses’ flexibility and understanding just underlines my newly discovered understanding that the National Health Service is an incredible institution. I was given the option to be treated privately at the beginning of this saga but my instinct told me I would feel safe in the hands of the NHS. And I do.
11) Today is chemo day. One of the up sides to spending so much time in hospital is to be able to watch the human machinations of the place in action. I have become fascinated by its natural ebb and flow, its routines and most of all by the working relationships of the Doctors and Nurses and especially how defined they are in their roles. It is like watching a 3D version of E.R. As a general rule the nurses are more empathetic and doctors/consultants are slightly more aloof but that doesn’t feel wrong. It feels like the optimum way to maximize their skills. It also means that often, when they are working together, a magical synergy occurs that can produce extraordinary and surprising results. Such is the case here. It feels incredibly moving to watch the nurses and doctors kick into action around me. It makes me feel important and unique and cared for and most of all, it makes me feel listened to. And that is the single most essential medicine at this point. The reality is that they are just doing their job and being fucking brilliant at it. And young George Clooney is in charge of course. No, scrap that. They are all Clooney as far as I am concerned.
12) Today is chemo day. There is definitely a debilitating disease called second-opinion-itis. I understand that people want to be sure, want the confidence of more than one diagnosis, but where does it end? Whose opinion DO you end up trusting? For me, I just want to get on with it and second and third opinions take an awful lot of time.
With my diagnosis and pretty much all my treatment so far, I can’t find a rationale to doubt what is being said to me. I put myself and my life in the hands of professionals and I have no reason to think I know better than them. Medically speaking anyway. And in moments like now for instance, when I need to be heard, that mutual trust that we have built allows a dialogue and a creative solution to be found to a rather tricky, delicate, and difficult problem.
The word ‘grace’ was invented for moments like this. Moments where everything falls into alignment. Everyone is working together at the same tempo and at the maximum of their abilities to produce an outcome that is best for everybody. It’s a bit like the most creative moments in a technical rehearsal in the theatre. There’s a kind of quiet and profoundly pro-active hum in the air. The calm is interspersed with moments of mania.
Good mania. Rewarding mania. Creative mania.
13) Today is chemo day. The medical staff have a plan. And we all sit round a table like adults and talk through the plan. I say ‘like adults’ because through most of this illness I have felt like a five-year-old, an eight-year-old and a fourteen-year-old respectively:
· The five-year-old doesn’t understand enough to know more than something hurts and he needs to cry about it.
· The eight-year-old knows too much. He sorts of understands. He knows things are bad but is too shy to ask the scary grown ups for stuff that might make him feel better.
· The fourteen-year-old is trying desperately to be grown up about it all. He is working very hard to hide his pain and his fear.
Today, because of the generosity and spirit of the doctors and nurses I am a young adult taking everything in and trying to work out what my opinion on all this stuff might be. It’s both daunting and strangely calming all at once. Daunting because you are being given a little bit of control back of your life and you better not fuck it up, but calming because you have been given a little bit of control back of your life back and you better not fuck it up.
The plan is quite simple. If I allow them to admit me now, they will give me intensive treatment over the next two days. They will then discharge me. I will fly up to Edinburgh for three days armed with a case full of drugs. In four days time, I will return to London and be admitted again for further intensive treatment. What occurs after that can be discussed at a later date.
14) Today is chemo day. My heart almost explodes with admiration and thanks for the amazing way they have dealt with difficult young me. The adrenaline that I am feeling at this instant is a brilliant mask for any fear that might be lingering around inside. I have a focus and a purpose for the next seven days and that’s just awesome. I immediately kick into action, changing flights, accommodation etc. A smog of tunnelled activity surrounds me. I am allowed home for an hour to get some stuff, talk to some people and return. I don’t even have to resort to crying to get my own side room. The nurses are on my team. We are all in this one-off feature length episode together.
15) Yesterday was chemo day. And Debbie comes to visit and she brings stuff. I always like it when close friends come to visit because the stuff they bring is normally good stuff. Debbie wrote the play that I am directing in Edinburgh. She is also in it. She is also a uniquely caring, empathetic and understanding woman. She is also a lover of the finely crafted cheap gag. As some of you may have already discovered, so am I. She is the perfect visitor for this moment. We are on the same Edinburgh team so it feels like she understands. She is a close friend who has been there from the beginning so I never feel the need or the pressure to explain anything. More importantly, in the moments where the harsh reality of the now starts to rear its ugly head, she has a unique ability to find the right bad gag for the right bad situation. Which never fails to cheer me up.
I spend two hard-core days in hospital with every possible drug being pumped inside me. The doctors are trying to arrest my decline at the same time as attempting to make a decision about the best course of treatment from now on in.
Through the Cancer Glass
At times like this, despite putting all my faith and trust in the hands of the Marsden medical team, I get lost in the vortex of the cancer looking glass. The huge world above me spins. I can no longer distinguish people’s voices. It is just one constant droning chatter. I have the fisheye lens POV and the massive men in white coats are surrounding me, scribbling notes, being madly scientific. I am sure that if I can discover the secret passageway, I will find the secret chemo development lab.
Huge vats of bubbling chemicals. Thousands of Bunsen burners.
Men and women with huge goggles on darting about. Speaking at a million miles an hour in a language only comprehensible to themselves.
I will be in a curtain of soft focus. As I walk through the laboratory, the boffins will nudge each other and point towards me with me with their heads. They will look me up and down and re-calibrate their potions accordingly .
Every decision is being relayed to me and a plan for my temporary release is being drawn up. And despite feeling like a tiny gravity-free molecular speck in a gigantic world, I am invigorated, liberated and empowered.
16) Three days ago was chemo day. In the blink of a crusty eye I am on a plane to Edinburgh. I am exhausted and exhilarated. The exhilaration isn’t really excitement for what is to come; it’s a bit more complex than that. I think it’s to do with the power of knowing I have wrestled back a bit of control. I have stared into the abyss that life was offering me, stood up to it and refused to budge. I am not laughing in its face because there isn’t a great deal of laughter going on but I sure as hell am not backing down. In the Cancer ‘who blinks first competition’, I’m not blinking. And I’m not blinking. Not blinking. Not blinking. My eyes are watering to fuck. The rest of my face is over contorted with the extreme effort of it all but there is no way on god’s earth that I am going to blink right now. If I blink now, I may as well die. If I blink now I surrender and that’s not an option.
As the great boss says, (Bruce Springsteen. Not God. Though they may be one and the same.) ‘No retreat, baby, No surrender’.
17) Five days ago was chemo day. I am sat alone at some trendy café just off the Royal Mile. In Edinburgh. My table is swimming with flyers for a thousand shows. People in strange costumes are shoving yet more flyers at me and shouting things.
‘‘Not altogether shit’ says the Scotsman. Two-for-One this afternoon only.’’
What normally would just annoy the total fuck out of me, now becomes this strange aching thing of beauty. A symbol of all I am about to be forced to give up. And I breathe it in. Try to make it last. But it didn’t. Last. It doesn’t. Last. It wouldn’t. It can’t. And nostalgic sadness envelops me and starts to strangle me. Tomorrow disappears. I stop breathing. The world goes white noise. I sit here. And I sit here. And I sit here. Paralyzed in a moment of ice-cold time. However hard I try, however hard I scrunch my face up and squeeze my brain, I just can’t breathe. I can’t see into the future. I try. I try so hard but the future is a blank to me. And I can’t breathe. I can cry but I can’t breathe
And it isn’t to do with death. It’s to do with the unknown. It’s to do with the realisation that from this day forward I have nothing ahead of me. And I am not just talking literally (on a weekly chemo cycle, I daren’t plan more than a week in advance). Ahead of me there is just a void. A simple, hissing void. The world around me seems miniscule and every second feels like a lifetime. And I sit here forever. And I don’t move. Don’t want to move. Don’t even think I know how to. But eventually I have to. Move. I have a show to direct! And that’s the point. I have to try and find a way to go beyond the paralysis and keep on moving.
You put one foot in front of another and in small, slightly unsteady footsteps, you move to the next phase in your life. And however treacherous those footsteps might be, you do have to keep going. Got no choice. And that’s what bravery is. Keeping on going, however many obstacles life tries to put in your way. However paralyzing life might try and make you feel.
And you get five stars in The Scotsman for that.