Monthly Archives: February 2014

Crossing the Rubicon

Little white motherfucker the Gioblastoma Multiforme

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.2nicky

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.

This is the night We told the children that Nicky was going to die.

This is the night We told the children that Nicky was going to die.

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.

Biopsy results day

Hi all.

Biopsy results day.

Nicky Barber has a condition known as Glioblastoma multiform. It is the most common and aggressive, malignant primary brain tumour. At an hour long meeting today with the surgeon and the clinical Macmillan nurse who will now manage our case we were informed that no radiation or chemo therapy will rid her of the tumour. Any such intervention will merely temporarily delay the onset of the symptoms. The tumour is deep within her head which makes surgical intervention impossible. For those of you yet to visit she has no sense of her left hand side, can no longer walk, move or wash without significant help. Her speech is deteriorating and a crushing fatigue is ever present.

On Monday we will meet the Oncologist who may offer some form of treatment, that we may yet take. However, all the medical opinion thus far has been that radiation therapy would not offer any really benefit, and would be likely to significantly and negatively affect her quality of life. Furthermore, even if we were to find a magic bullet, a miracle cure, the damage done is such that it will never be repaired. I cannot sweeten this pill my friends. I tell you as we were told. Like me you’ll want this to be the worst of dreams from which we’ll wake, but that’s not going to happen.

The kind, funny, graceful, beautiful soul that I have been so lucky to have loved is terminally ill and the timescale is short. I am reassured that tomorrow we will be visited by the palliative care team who will help me fulfil Nick’s deeply held wish that she should be at home safely with the children and me.

Please do us a little favour, today or tomorrow please go to your friends, your partners and children and hold them. Tell them that you love them and share a little moment in celebration of the things about one another that matter, that you love, and that make your world a better place. Remember the little things that are the familiar fabric of life.

My world is torn apart. It seems as if the house itself is weeping and still there are not enough tears. We have told the children as advised. Betsy asked if it meant we would have to ‘take mum to the vets?’.

There is no good in this. The next few weeks will not be easy. I may post things here as they occur, but it’s likely to be sad, possibly angry and certainly emotional. Feel free to hide my rantings in your timelines however you choose.

I am grateful, so very very grateful, for the kindness of friends. I will need help in the short term and in the long.Today Brian Redman got us out of a big hole andSusie Sefton has been kind enough to offer to coordinate the many offers of meals.

Once more, with feeling, ‘brain tumours really fucking suck’.

sx

Brain tumours really fucking suck

Nicky with girlsNicky Barber on the receiving end of some proper home grown loving. We are coping well at home with this change in circumstances and on Monday the care of the District nurses and MacMillan nurses kicks in. Feels nice to have had a weekend of just us. Lots of people in uniform in your bedroom is not always what is wanted. Really.

There’s still a few days before we get biopsy results and know for sure what we are in for.

I’m sure everyone reading this will be wanting to know what the doctors have told us. Fact is they’re amazingly vague. ‘Everyone’s experience of the ilness, treatment and recovery is different’.

They, and we, are all in agreement and clear on one aspect of this.

‘Brain tumours suck, they really fucking suck’

Nicky comes home

Nicky Barber is in the house. Finally persuaded the Hurstwood park doctors that while we wait for the results of the biopsy there’s no reason to be in hospital. So last night we ‘sprung’ her. Wonderful to have her back in my bed and great she’s here for Betsy Bubble’s birthday. She is very tired and is struggling with moving particularly her left hand side.

Biopsy day.

Today Nicky is in surgery. A stereo tactic biopsy will be performed with a frame clamped to Nick’s head. She’ll be sedated and scanned with the frame providing precise coordinates of the lesion for the surgeon. He’ll remove samples and they’ll be analysed. Once that is done we’ll be able to plan treatment. Looking forward to that. Thank you for all your messages. I think we have a battle on our hands. It’s good to know we have an army of friends.

Hurstwood Park Neurological unit

New Post. I don’t know which is better, a new post or commenting on the old. You tell me. The beloved Nicky Barber is now at the Hurstwood Park Neurological unit in Haywards Heath. 

We’ve met the surgeon who is going to do the biopsy. He seems to know what he is doing but an anecdote about spilling his soup down an old family friend’s suit didn’t inspire confidence. In reality it’s great that we are finally in the right place, off a stroke ward of shouty, farty, sweary old ladies and into a tightly run ship where the removal of lumps from heads seems like a pretty standard affair.

Tomorrow is a rest day then Thursday brings a biopsy. This is itself a fairly major piece of surgery. The results of the biopsy may take 7-10 days to come through. So it may go a bit quiet until we know more because the biopsy will determine next steps.

When we are into that phase well be taking ALLL of YOU who have offered to help, visit, support up on your kindness.

The journey continues, thankyou again for the love and wishes. It’s by far the hardest thing we have ever been through.

Nicky is unwell

Hi all. Nicky, my beautiful wife, is in hospital tonight. She has a tumour in her head that has been identified as the cause of recent physical problems. It’s very early days. At the moment my focus is very much on making this situation ok for Tilly and Betsy. I’ll update here but my brother Philip Smith is helping me keep folk up to speed as we find out more about the journey ahead.