Against the Dark

I sit with my Mum.

She is dying.

‘All our Neurosurgeons have operated on your mother’ 

We all agree Mum has had enough. 

The need for surgery to remove a large bleed on her brain is the resting point. 

She has fought. And fought. And fought some more. 

Enough is enough.

No more suffering.

It’s a unanimous decision.

Not even a hard one.

It is so clear, to both family and Neurosurgeons.

And we turn another corner. A final corner? 

Walking away from a meeting with the Palliative Care team with a cup of tea in my hand seems somehow poignant.

I will be drinking tea for my Mum now.

No longer hiding the imbibing of the treasured liquor from her.

Drinking it for her.

Post Mum’s first surgery all she wanted – so very badly – was a cup of tea. 

She was so feisty – not a word I would previously use to describe her, but so much fun! 

‘Kate, would you squeeze my hand please?’ ‘Only if you give me a cup of tea!’

This evening the nurse hands us packets of biscuits.

Gingernuts.

Mum’s favourites.

We sit around her bed together and toast her with tea and her favourite biscuits.

How do you pass the days sat around a loved one waiting for them to pass?

It feels like a time to be so treasured.

Losing someone is so very hard, and suddenly without warning or goodbyes impossibly hard.

But here we are. 

As a family.

Sharing the good times we have had.

So very very many of them.

We have laughed today about her last few words. 

She had a ‘good day’ with Dad and Anna, the day before her birthday. 

HDU. C Bay. Bed 2 – the numbers important as we’ve played many a game of bed bingo as Mum has moved around the hospital.

She was trying to climb out of bed.

This may sound fair, or even positive progress, but she really wasn’t up to it – physically at least.

Dad told her she really couldn’t get out of bed and go home with him.

‘Bullshit!’ She shouted loudly to the entire HDU bay.

Oh how we laughed!

The next day was her birthday.

Friends and family around the world had recorded video messages.

She was beginning to struggle to keep her eyes open, or talk on this day – to be taken for (emergency) surgery number 5 that night.

But later in the evening Tom replayed the birthday video.

None of us knew everyone on the video – who knew Mum had so very many friends and people whose lives she has touched? – but in amongst them there was a musical rendition of Happy Birthday. 

‘Hmm… That’s Tim, and that’s…’ Tom thought out loud. 

‘Mrs Tim, teacher at Westley… Erm…’ 

‘FRAN’ Mum barked (I use that so affectionately).

Her last word.

Memories too – both of Mum and of our own grandparents.

And carpets with swirls (yup – it was the seventies), and Blake Seven and the chip van and Brownies (the gnome-elf-sprite type, not the chocolate ones) and the noisy very scary boiler in the new house and Tom being born, and Dad going to pick up his new born sister from somewhere on Eastern Avenue in Gants Hill.

Mum’s body is slowing down now – 8 breaths a minute yesterday, just 4 or 5 today. 

Long stretches of not breathing – ten seconds go by while you wonder if maybe that was the last.

You find you too have stopped breathing.

We are learning to ensure you keep breathing while watching – the breath pattern of someone winding down towards death is not a good one for a healthy adult. 

Mum has had no painkillers – bar one dose of paracetamol – after 3 months of fighting to live, one could not have hoped for a more peaceful parting. Just slowly slipping away from life. Surrounded by family, with friends dropping into the equation every now and then (especially appreciate the one who arrived with cake – though to be honest if I don’t have some soon it’ll be gone before I get a chance!)

Mum’s friends trickle in and out. Dad tells them the trouble is he is losing his soul mate.

The friends tell us that, as leader of all the local orchestra since she was in her 20’s, she has been such an inspiration. Has touched the lives of so many. Taught hundreds of people (many now in the profession). There’s a message from a man who Mum taught the violin the ‘wrong’ way around – he had some damage to his left hand that meant he would never be able to finger the violin, so she taught him using a mirror, in which he looked the ‘right’ way round. We all remember her at home learning how to do this.

A lovely lady (an old colleague of mine) leaves Mum a beautiful message remembering she was probably one of her first pupils. Tolgate Primary School – Mum’s first teaching job after leaving the Royal Academy of Music. 

The love is overwhelming. 

If we could only wind the clock back four months and tell her the overwhelming love that has been displayed since she has been ill.

How touched she would be – though modesty and human nature would probably not allow her really hear the words – for how many of us would that be true?

The Dean was to visit on Sunday evening. Both we and the Palliative Care team were surprised at rate of slowing down – so we messaged him to come sooner if possible.

He was here within the hour.

As he left the most stunning sunset appeared.

Though unconventional to add Acknowledgments before you reach the end, now feels like the right moment. And you can do worse than ignore a right moment.

The literally hundreds of staff at Addenbrookes who have fought to save Mum’s life continues to astound me. And those who are gently seeing her out too.

But there are a few who have guided us along the way who will never be forgotten. 

Who have particularly stopped to explain patiently – especially to Tom and I as we have studied so hard to gain medical qualifications along the way – now experts in drains, shunts, CFS, GCS, Bolus-ing (or specifically ‘DO NOT BOLUS’ing), EEG’s, Trachees, Fisher and Peykel, yankers, secretions, Swedish Noses, flowtrons, NG’s and all the various types of ‘salad cream’ Mum has been kept alive on (we remain in hope to persuade a nurse to smuggle a glass of sherry into the bottle now).

There’s scans – CT and MRI – and reading them, menigioma’s (the 1.6cm tumour – known as ‘the bugger’ for quite a while) that started all of this fuck awful rollercoaster ride, pic-lines, redline brain functioning monitor, sodium levels, potassium levels, brain fluid levels, both negative and positive. And the basics – Respiratory levels, ECG, oxygen levels, Co2 levels and the one that has remained an enigma to me – I’ll never get this brownie badge – blood pressure?!

But less of my achievements (so easily distracted) and back to the awesome team that we are so eternally grateful for:

‘Big Mr G.’ (Matthew Guilfoyle) and his team of Neurosurgeons.

The long list of amazing NCCU Doctors – including Laura, Wang and Nick.  

And the seemingly endless nurses that have cared for Mum. 

After around 8 weeks of one-to-one nursing care we would still, 5 or 6 out of every 7 days, meet nurses we had never met before.

Rebecca Pink, Kristie, Dana, Irene, Emily, Malavika, Eben, Prescilla, Melissa and (living up to her name on so many occasions) the very lovely Angel.

Before we left Mum late last night, my siblings and I sat around Mum’s bed and I finished reading James and the Giant Peach. Darkness slowly moved in and only the book was lit up.

We switched on the Faure Requiem for Mum to listen to, said our goodbyes (again…) and crept away for the night.