Today I crossed the Rubicon. A step on this journey that has taken me to a place I could never have ever imagined being. It’s truly a ghastly, fearful place. It is against nature, against love, against all that I have ever held dear. This small step signals the beginning of the end. An end as certain as the night. For now I am in the twilight, a half light, full of hollow demons, and dark, lonely nighttime sobbing. For the time being I am all cried out, shivering by the fire. Today I have taken an unwilling step towards the void, sanctioned by medics, enabled by pharmacists, and as numbing for me as I hope it is for Nicky Barber. Since when did an act kindness cause so much anguish, pain and despair?
Today is day 19 of a living nightmare. It is not yet three weeks ago that I walked into A&E with my wife. From that day we have received nothing but an endless stream of ever worsening news. Symptoms, a brain thing, a lump in the brain, a tumour, a malignant tumour, an inoperable tumour, an aggressive tumour, a spreading tumour. A tumour that has damaged the brain such that it can never be repaired, a tumour that will not respond to treatment, a tumour about which nothing can be done, a tumour that for my beautiful, talented, actor wife will lead to one, inevitable, final, curtain. This scan (below) reveals the extent of the little white motherfucker.
Those of you lucky enough to have met Nicky, worked with her, been her friend, colleague, or fellow school run mum will not need to be reminded of her grace, nature, and spirit. The wonderful comments on FB about her attest to that. Those who know us as a couple will I hope understand, as we do, the meaning of ‘The whole being greater than the sum of the parts’. We were made for each other, we delighted in our love of each other, we constantly made each other laugh and we felt our happy, sporty, funny children reflected not just us as individuals but us as a team. In 2009 I was working away a lot, one night I had to leave home to travel North so i wrote her a love letter whilst on the train. Five years on it’s as true as it was then. I can’t begin to explain how lonely life without her is just beginning to feel.
So how does one respond to this news. How do you make sense of it? In truth there is no sense, no reason. In three short weeks I have turned from lover to carer. Nicky’s deterioration is, inline with the medical news, consistent, rapid and bad. I remember as a child running too fast down hills and feeling my feet unable to keep pace…the fear of being out of control was both thrilling and terrifying. At times i recognise in Nicky’s face that look of terror. Wide eyed, she looks at me. I try to give reassurance but what can I possibly give? She is on the brink of death and I am broken. We cling to each other. “I love you, I love you, I love you”. Our children hold her up in bed, wipe dribble from her face, move and stroke her two lifeless, useless limbs, and all the while they yearn for their Mum to sweep them up and giggle into their necks. Right now my friends our world is totally and utterly fucked. As Nicky explained to Betsy the realities we face i stole a picture.
I would like to start collecting memories and anecdotes for the children to remember her by, that are NOT of this time. If you have story to share please do it here: http://bit.ly/wordsaboutnicky
To a person the medical staff we have been treated by have been professional, open, pragmatic and kind. The system leaves something to be desired though and it is a tragic insight into the malignant power of the ‘grade four glioma’ that at last we feel as if we are being treated by people who know, understand and can deal with us appropriately – the hospice at home care team. A kindly palliative care consultant explained the prognosis. As the thing takes hold over the coming weeks there are still uncertain routes we can take before we reach the destination. We love surprises. If it is below the head and, because she’s bed bound ,we might expect a pulmonary embolism or a chest infection to take hold, a chest infection, how fucking prosaic. Above the neck we might look out for a sudden seizure, or bleeding on the brain to deal a swifter blow. If neither of those release us we can expect a slow decline, she’ll sleep more and more as the brain switches off her ‘non vital functions’. Finally the effects of the tumour will mean her brain can no longer sustain her ‘vital’ ones.
Until then we must as my friend Edward Eddie Morgan said ‘Put life in her years if we can’t put years on her life’. Sunday is a Pamper party for the girls, Monday brings David Rumelle and his panto dame of personal care. In her waking hours we make films, do plaster casts of hands and faces, cuddle and try hard not to think of the long steep hill we are running down.
Nicky has never drunk, smoked, used drugs. She’s led an exemplary life of health. Tonight as she lay with her head in her hands she implored me to open up the packet of oral morphine. I obliged. Morphine, the stuff that dreams are made on. Poor beautiful Nicky yearns to sleep. It is breaking me apart.
Sorry, I did warn you.