Mum news

My mother has changed since the beginning of July.

On 7th July, she was laughing and lovely, at my father's side, at her brother's 70th birthday, smiling at all his friends who had come to Norwich to see him.

On 8th July, she was pale and tired, but thrilled, as her whole family waited to eat lunch in the scented courtyard garden, her baby grandson playing at her feet in the sunshine, the lillies about to open.

She told me how excited she was about my book launch that Thursday: she had just started to read the book, and she wanted to come to the party in London later in the week, with Dad. I kissed her and Dad goodbye and J and I headed back to London in the late afternoon.
Later that night I spoke to her as we ate a late dinner. She was still so excited about Out of the Tunnel, and its very first reader reviews ever. And she had just been reading my blog and she wanted to warn me about a troll who had been leaving obnoxious comments. I thanked her, told her I'd put comment moderator straight back on, how I was sorry it had upset her.

On Monday 9th July, before 8.00am, (the time you never get calls, unless it is terrible news), I got a call from my uncle, her brother, to say she had a severe stroke, totally out of the blue.

My husband, my sister and I ran to get back on a train to be at her side.

Mum has never smoked, she is fit, and only in her early sixties. The only time she has been in hospital is to have her three children. Oh God, why her, why now? It did not make sense.

In the first few hours after her stroke, there was this great leaping spike of hope that carried us on, as we rushed to be with Mum and Dad in Norwich. We had heard, through Dad, who was at Mum's side in hospital, of a chance to give her a new clot-busting, effects-reversing drug, TPA. It was being trialled at the hospital where she was. There was a tiny chance she might die if she had it, but a strong chance she might massively improve.

It had to be administered intravenously, by a neurologist, within 3-6 hours of the stroke.

I remember that moment: how my desire for a miracle hardened into a white hot rock in my chest. I remember how I had spent the train journey to Norwich telling my sister, it's okay, go on, you can cry, but then dry your eyes, because Mum and Dad need to see you, looking normal, not distraught. They need to know there is hope; show them.

I remember how there was no time for me to cry: I was too busy finding out about strokes online, ( via a borrowed Blackberry). Talking to Amar, my sister's beloved companion, who is a senior registrar at an A&E, staying clear-eyed, focused, technical: tell me everything, all I need to know, what can I do, what can I say, to make sure they save her? This miracle drug: tell me, tell me it all. Costs. Risks. Benefits.

(This is what I do in a crisis. I go ice calm, seek information, and hells bells, it all goes in, like it never does normally. My memory becomes photographic, everything becomes hallucinogenically, inhumanly clear. Every detail, every breath, every thought: I remember it all, then and after.

The trouble is - afterwards - when the shock fades. The over-intense memories loop, loop, jam and fast-forward, and my real-time short-term memory crashes out completely. But still. It is a damn useful state to be in whilst it lasts.)

Dad called whilst we were an hour away from the hospital. He had signed the consent forms.

J held me. He held my hand and my sister's hand: he had bought the train tickets, bought tea, made us drink it, found a taxi to the hospital; held me together just by being there. I love him so much.

As we arrived at the hospital we found my father, grey-faced, shaking, telling us the ''computer says no'' to the mum having the drug on trial. My uncle, mum's brother, was with him, looking straight into my face. There was nothing much to say.

The randomised trial-allocating software had disallowed mum getting the treatment.

But I had already prepared for this possibilty with Amar.We got to the hospital and I went straight to the desk. 'Please', I said. 'I need to speak to the consultant, the neurologist, about our mum'.

'Your mum, she's in there', the desk nurse told me.

'I know, but can't go and see her yet, not until I have spoken to the consultant,'I said, 'I am so sorry, but what we have to say, is too important, even to wait five minutes. We can't even see Mum 'til we have seen him. Please. We are running out of time. There is a drug that could save her, but it has to be injected in the next twenty minutes. Please. Please, can we talk to him?'

The consultant came. His face was kind.

I begged. Very calmly. Still dry-eyed.

Please, sir. We would pay, if it was a paying thing, please, it didn't matter about money, we would find it. My husband was a lawyer, he would draft a waiver, a disclaimer, whatever, there would be no comeback, no blame if it failed. Please. My sister's partner was a registrar, he was suggesting Mum had the drug on compassionate grounds....Please, please . Please...

He was so kind to us, us, the worst kind of patient's families, I expect, with a little knowledge, and desperate enough to argue, to beg. He explained, carefully: Mum had heart problems. She had in fact been due for an EPG the next day. After a month of explaining to her GP about chest pains and water retention and breathlessness, they had finally got around to doing the damn obvious, and checking her heart out. But the stroke had struck, twenty four hours too early: it was too late now to diagnose the minor heart attack.

The heart attack that should have been picked up earlier.

If she had the EPG 3 weeks ago.

When she first complained of chest pains and breathlessness and swollen ankles.

How I hated Mum's GP at that moment.

Amar spoke to the consultant. Fast, technical language was exchanged: I struggled to follow, with my new knowledge that I had inhaled so greedily about strokes on the internet in the last three hours, and my basic anatomy and physiology from years ago. The consultant smiled at me sadly, passed the phone back over.

'I agree with them, he is right, I'm sorry', Amar said, his voice cracking. 'They can't give the drug to your Mum'.

And so, we went in to see her.

When I first saw Mum in hospital, she could not speak, nor move her right side, not focus, only try to hold our gaze, as her eyes, flickered, as if she was watching railways tracks pass through the a window of a fast train. Flick-flick. Flick-flick.
The light inside that was Mum was still there, but the candle guttered.

We were not sure, then, if she would live. We were not sure if she would speak, or walk, or do anything for herself ever again. We were too scared to hope. We were too numb to pray.

And now the hope about the drug was over, and that was that. No miracle.
Dad was blank-faced, frozen, terrified. Looking at him, I could see that he wanted to die at Mum's side. The shock and grief was too much: hope had gone.

I walked into the cupboard where Mum was being kept, next to the nurse's station, and I stared it down: a future without her, whilst I held her hand.

But.
Wait. There was hope after all.

By the end of week one, she was drinking tea, with the wrong hand, looking straight into our faces. She could say 'yes' and 'hello'.
By the beginning of week two, she could sit in a chair, then stand, with support, briefly, and wriggle her toes on the right foot. Say a few words, and smile, and wave. (Always smiling: she smiled and waved from the second day: Princess Mum, eyes shining with dignity and humour, determination. )

And now. Week three. You know what she does?

She walks. She damn well walks. 40, 50 steps. Her arm is still paralysed, but her legs work again. She walks with a stick, careful as a ballet girl on a trapeeze wire, smiling at me, proud.
She speaks, she talks, she listens.
Words, sentences, laughing.
Conversations. Slow, but they are there.

Oh, sweet Lady Lazarus. Dad believes in the future now; his love is returned. All is well, and all shall be well, and all manner of things shall be well.
Her heart is swollen, but her spirit is bigger.
Mum is back and we are so damn proud of her, so thankful, so grateful.

I know how many of you have been reading this blog and thinking of her. How many have sent emails, texts, cards. flowers, love. So I am sharing the news.

Thank you.