Rage, rage . . .

My sister could not stop crying once Dad told us he was dying. She got into a routine of getting up at five every morning and walked the dogs along the Norfolk strand so that she could howl and wail and weep without anyone listening.

I couldn’t cry. I wanted to. I expected to. After all, I was the one who always cried. I could cry at the drop of a hat. I cried at films, at books, at good news and at bad. I cried at weddings and baptisms and funerals. I cried during arguments. I even cried when my husband proposed to me.

But I couldn’t cry about my dad having terminal cancer. Instead, I raged.

It was not a specific rage. It was not directed at the cancer or at the doctors or at the dying of the light. It was an indiscriminate rage which reared up when I least expected it: white hot and roaring and not a little bit mad.

The first time I experienced it was the day after Dad called me with his news. I was due to get a train at midday to go on my book tour, but I needed to go for a run before I left. I had so much pent-up energy. I put it down to feeling nervous about the tour.

I was running along the towpath near where I live. I was running faster than I usually do. As I ran, I became aware of a small black and white dog, sitting in the middle of the towpath ahead of me. Its owners were standing by a narrowboat, calling it to them, ‘Daisy, Daisy!’

I remember vaguely thinking that I hoped the dog would return to the boat and would not jump up at me, as small dogs are wont to do, and I slowed my pace a little. As I approached the dog, it remained sitting cutely, right in the middle of the path, ignoring its owners. I swerved to avoid it.

At that very moment, it jumped and pawed my legs. I slowed some more and waited for the owners to be more insistent in their calling, but they simply stood and watched as the dog jumped higher, dug its claws into my thighs and then dived under my feet. It all happened quickly, as these things do, and at once I was flat on the ground, my hands out in front of me, my skin stinging.

I got up, aware of a sharp pain in my knees, and walked stiffly to a nearby cafe where, in the ladies, I peeled off my running tights and inspected the damage: two large gashes on my knees, gravel embedded under flapping skin, blood pooling darkly in the wounds. My hands were only grazed, but they too were hurting. And I was three miles from home.

That is when the rage came. It welled up, racing through my veins, like the blood pumping from my knees, dark and hot and violent. I hobbled out of the ladies, my head full of the words which then streamed from my mouth at the two astonished men, standing by their boat, their sweet little dog at their feet.

‘You should have your animal on a lead! What if I had been a small child or an elderly lady? My knees are bleeding, I am three miles from home. I have a train to catch!’

I ranted. And as I ranted, another part of my brain was saying, ‘They are two old men. They are Dad’s age. They are saying sorry. They look mortified. Stop shouting at them.’

The trouble was, I wasn’t really shouting at them.

There has been a lot of rage since that day. There have been tears too – they did come, at last. Tears are more understandable, more acceptable. I still have two deep purple scars on my knees to remind me of that day. I look at them and feel ashamed. Maybe if I had broken down and cried in front of those men, that would have been OK. But the rage is a natural part of grieving too. I know that now. I just wish I hadn’t taken it out on two white-haired old men and their tiny cute dog. I wish I could find them and explain: ‘I was grieving.’

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Guardian Angels

What a difference the diagnosis ‘terminal’ makes. Almost the second after the ‘terminal’ button was pressed, Operation Cancer went into top gear. The care and attention for which my sister and I had been fighting for months was suddenly there in abundance for Dad. We  weren’t in the dark any more, shouting and screaming for help. It was as though all the lights had come on, as though a gag had been removed.

Dad was assigned his own personal guardian angel in the form of a Macmillan nurse: a woman whose very voice was a balm in those panicky, unreal days of coming to terms with ‘terminal’. She was there, on the end of the phone 24/7. She was a lifeline to our family while we squared up to death and looked him in the eye.

Up until this point, every aspect of Dad’s care had been a battle. This was because Dad’s home situation had not been adequately assessed. Dad was therefore discharged, barely a week after his tumour was removed, into a world of chaos.

‘Dad, you can’t go straight home after a major operation like that. You need some respite care.’

‘I will be fine.’

‘What about bathing? Going to the loo? Preparing meals?’

‘I will be fine. Mum’s there.’

‘Dad. Mum is mentally ill. You are her carer.’

‘We will be fine.’

Turns out Dad had told everyone he ‘would be fine’. No one knew that he was going home to someone on the autistic spectrum; someone crippled with anxiety and depression; someone Dad had been caring for himself until he had fallen ill. No one knew that he was going home to someone who was more worried about him ‘oozing pus and blood’ on to her carpet than she was worried about his personal wellbeing. No one knew that he was going home to someone who would insist that he sleep on the sofa on a piece of plastic sheeting that she had dragged out of the garden shed; that she would eat and prepare nothing but lettuce and ham; that she would not let any carers in, not even the District Nurse. No one knew what a nightmare home had become since Mum’s first psychotic episode nearly two years before.

Within the week Dad was back at Stanmore being treated for post-operative infections. He  stayed there for the next three months until it was found that no more could be done for him. Until his cancer had spread and taken hold throughout his body. Until his guardian angel stepped in.

Mum, meanwhile, was at home, her own mental health deteriorating.

The right understanding of any matter and a misunderstanding of the same matter do not wholly exclude each other.

This quote from Kafka’s The Trial could easily be a line from the Mental Capacity Act 2005. Once you enter the hell that is mental illness, whether you are the patient or the carer, you enter a world that is pure Kafka. Because, unlike Macmillan Cancer Support, it turns out that Mental Healthcare does not provide guardian angels. There are only judges and jury and prison guards advising that you grope along the wall in the dark until you feel a door. A door which you can bang and scream at to no avail, because the lights don’t come on and the gag isn’t removed.

There is no Operation Mental Health, just as there is no ‘terminal’ button – not in the form of diagnosis in any case. You can find a way of making one and pressing it yourself. Mum tried. Luckily she failed. Unluckily, even that was not enough to get her the help she needed. We had to wait until Dad died for that.

Because Mum did have a guardian angel. It was Dad. And now he’s gone.

How Long Does it Take?

‘It takes a year,’ people tell you. ‘The grief passes after a year. Once you have been through all the anniversaries. You’ll start to feel better then.’

Some of these are people who are in the know; who have loved and lost themselves, who want you to understand that you need to be kind to yourself, to go gently.

Others just say it, easily, as though it is a magic formula, the implication being: ‘It takes a year, and then it will be over.’

Strictly speaking it has not yet been a year since Dad left us: it has been a year since he told us he would be leaving. But we have already had our first Christmas without him, his birthday, our birthdays. We have watched our kids do things we would have loved to have told him about, heard things on the radio we would have loved to have shared with him, watched new seasons of his favourite TV shows and wept that he wasn’t there to enjoy them too.

The Victorians had a formal timescale for mourning. This, I feel, along with their black dress and black armbands, were helpful social signifiers. They said, ‘Tread carefully, because you tread on my grief.’ They said, ‘I might not be having a good day today.’ They said, ‘If I am angry or irrational or clumsy or absent-minded it is because I am still mourning.’ They said, ‘I am not over it yet.’ The Victorians might not have liked public displays of emotion, but they knew the emotions were there and needed to be respected.

We are all about emotion these days, but we have no idea how to handle mourning. I still, eight months on, have days when I would like to slip on a black outfit that acted as a shield. I would like to wear a suit of armour against those well-meaning people who think all I need is ‘cheering up’. I would like to slap a band of black on my upper arm which clearly says to the world that I am not to be approached today.

Instead I have to keep working, keep smiling, keep doing the school run, keep eating and breathing and speaking and doing and being.

‘It takes a year, and then it will be over.’ Maybe once all the anniversaries have been and gone for the first time, the pain will lessen. But perhaps we don’t want it to be over, my sister and I. Perhaps we don’t want to forget what it was like to sit with our father in hospital; to share conversations we had not been able to have before; to be there for him when he most needed it; to be there at the end, kissing him, talking to him when he could no longer hear, and, yes, even singing to him in the last hour of his life. Perhaps we don’t want to obliterate the image of his passing.

If I’m honest, I don’t want it to have been a year already. The time has gone too fast. I don’t want to wake up and realise it is a year to the day since he has gone. I need to replay it, to talk about it over and over and over again, because to erase it, to let it go, is to let him go. And I am not ready for that.

The Call

I was hurtling towards a deadline when the call came.

A year ago today.

I was writing flippant dialogue between snippy teenage girls, making up scenarios about irrelevant, bitchy arguments. I was inventing stories, creating worlds, a million miles away from the real one which was about to rear up and kick me in the face.

‘It’s me.’

I knew straight away why he was calling. I had to turn away from the computer screen, bend over with my head between my knees, stare at the carpet. Focus.

‘Dad.’

Silence.

‘How did it go, Dad?’

He gave a whimper. An alarming, childlike noise. My sister and I both say that a year on we still hear that whimper.

Focus. Focus.

He started to babble. ‘I’m so sorry. I’m sorry to disturb you. I know you are working. I wanted you to know. I wanted to tell you. I’m afraid I don’t have much time left.’

Take this in. This is important. This is bad. Feel. React. Say something.

‘Not much . . .?’

‘I’m so sorry,’ he repeated, as though he had caused some offence. ‘The cancer has gone to my spine, my lungs and my collar bone. They think I have got three months. It is so upsetting for everybody.’

‘It is so upsetting for everybody.’

All those apologies, as though death were a bad choice on his part.

I can’t remember what I said next. I must have told him to stop apologising. I must have said I couldn’t believe it. I must have said I loved him, that I would go through it all with him. What did I say? My diary is not much help. I was about to go away on a book tour. I was worried about going away before being able to see him. I was worried about how Mum would take the news. I was inadequate.

Words failed me. Always irritating, to say the least, when you are a writer.

I do know that I closed the document on my computer, because the next time I opened it, after he had died, the date indicated that the last time I had worked on it was around 2pm on 27th April 2015.

He died on 28th July. Three months and a day later.

How can they be that accurate? I still think about that. If I had known on that day that we really, literally only had that amount of time left, what would I have done differently? Would I have cancelled everything? Stopped all the clocks? Cut off the telephone?

What should I have said on 27th April 2015? What should I have felt? A year on, I still ask myself.

Because the thing is, no one tells you the rules for grief. No one tells you that it is OK to go through it in your own way. That it might start on the day your father tells you that he knows that he is dying. Or it might not. That you might be struck dumb with disbelief – possibly for days, weeks. Or that you might roar with rage, or that you might cry and cry until you make no sound, or that you might feel sick to the stomach, or that you might not be able to sleep, or that you might want only to sleep – sleep forever so that you don’t have to wake up and feel all these physical, sharp, deep, painful things. No one tells you that any and all of this is ‘normal’ and ‘all right’ and ‘allowed’. No one tells you.

No one tells you, because unless they have been through it themselves, these days, they don’t know or talk or want to talk about grief and death and our possible daily proximity to these things. No one tells you, because it is better not to think about it. And because sometimes there are no words.

Sometimes there is only a whimper.