Thursday 15 August 2019

What a difference a day makes

The day I wrote my last blog post, Monday April 29th, was the day everything changed.

It was the last day of Luke's teens. Miss B was going to a friend's house after Rounders so the four of us could watch Avengers Endgame. (It's not that B couldn't come, she just isn't interested.) We couldn't go on the opening weekend because Z was on a camping trip so we'd been extremely careful to avoid spoilers. We had brilliant seats, we'd been looking forward to it for ages, it was going to be A Good Day.

As not monsters polite patrons, we all turned our phones off for the three hours plus trailers. It was a good film. Or at least I think it was, because I honestly don't remember much. Events rather overtook us.

In the lobby of Leeds Everyman Zach was the first to turn his phone back on. He was already ringing back a missed caller when I saw I'd missed numerous calls from Mum. "Hi, Nana, yes, she's right here - Mum, Nana wants to speak to you."

On Good Friday 10 days before, the four of us went to a screening of Monty Python's Life Of Brian with Mum, Dad, my niece and her pal. It was tremendous fun culminating in an audience singsong. When we got back to the house I noticed Mum had an awful bruise on her hand. "Wow, what happened? That looks dreadful?" Mum was startled. She hadn't hurt herself, didn't feel anything. Odd.

She mentioned the following day she was feeling really tired. She'd just had a 17 year old move in, so I thought that wasn't really surprising. Teens are ace but knackering. Over the next week she was increasingly exhausted as she carried out her normal active life - Nordic walking... I swear I'm a changeling in that family - but not being able to manage her usual number of matches at her beloved table tennis showed something was clearly Not Right.  She went to the GP on Monday morning for a blood test.

"The doctors say there's something wrong with my blood, my bone marrow isn't working. I have to go in tonight for a transfusion."

And that was it.  New rules applied.

It's not supposed to be this way. Mum is the one who is supposed to live to a grand old age. Dad's had so many health problems, he looks increasingly frail when something else hits him - he lived through sepsis and complications following surgery in the last two years alone.  Colin's 80 and had a quadruple bypass over 20 years ago, turned down a subsequent one. Marion's health has been lousy for years, and she struggles to get farther than her garden.  Mum was the youngest, the fittest, the one with the most smoking-free years, the one with the healthy lifestyle and active engagement in the world. Everything you're supposed to be. Everything that's supposed to keep you in good health.

The narrative went wrong. The wolf ate Red Riding Hood, the ugly sister marry the prince. There are supposed to be rules, damn it.

20 days from the blood test, my Mum died.

On the whole, it was a good death. 15 years too early, but good. Her illness was short with very little pain, just exhaustion really. She could make her peace with what was coming, she reflected on her life and said she'd been so very lucky. She could say her goodbyes - in person or by text to her cheering squad of friends and family on a WhatsApp group we made for her. I was able to stay overnight a few nights, thanks to the lovely staff at The Christie in Manchester, so she wasn't alone for much of it, and she was with Dad, Neil and I when she died. As her oxygen levels dropped, the morphine kept her from feeling distress and she died holding our hands.

Everyone said I'd been great. Everyone said I'd been a rock, a wonderful daughter. It's bullshit. I did it because I could, and I *had* to do something. Sitting at her side all day, getting drinks, pulling lip salve on to stop them cracking, moisturising her hands and feet in the dry hospital air, helping with bedpans and meals, drinks and CPAP masks... these were all small and achievable things. Even the travel was nice - the transpenine rail journey is a breautiful one and the tram from Victoria to West Didsbury goes through some lovely areas. That was the easy stuff. Sitting at home wondering what was happening would have been far harder.

I knew Mum was dying. So did Mum. We talked about it, which is a bloody difficult conversation to have. She didn't want to distress me, and I wanted her to be able to talk and just ignore my leaky eyes because that was OK, it didn't matter, and I couldn't stop it so let's just not worry about that and keep talking.

She was frightened of suffocating. I promised I'd intervene, I'd be her advocate and fight for what she needed when she couldn't, to make it as unscary and as gentle as possible. She remembered her own Dad's death, and how desperately she tried to hold on to him when he was ready to die. He asked her to let him go; it was so hard for her. She didn't want that for us. I can't speak for Neil, I know he and Dad were blindsided by it which makes everything harder, but I was OK. Mum knew she was dying, she knew how she wanted it to be and I could help.

We talked about the funeral. She used to want to be creamated but later decided burial, especially an environmentally sensitive woodland burial, would be better. "And don't let your brother get one of those tacky floral MUM displays. You know what he's like!" Yes, I do know, and it's OK Mum, I've got you covered.

In the immediate aftermath, I rang Mark to come and fetch me. Dad and Neil were reluctant to leave me alone at the hospital, but quite honestly it was a relief. I've never liked crying in front of people, and I was struck numb anyway. Best to have a little time to sit quietly.

I rang the few people I thought would need to know in person, then sent out a message across WhatsApp, Facebook Messanger, email and text to everyone else. That was OK too, although talking was hard, except to my cousin Al who loved Mum like a mother so was in the same boat, really. People obviously wanted to express their grief, their shock, their sympathy. I didn't want to listen - it felt like a burden I had to help them carry and I didn't have it in me. I just wanted to be quiet and still.

Dad kept crying, and yelling at himself for crying. I didn't cry, not much. I still don't. A little leaks out now and then but it's soon shushed and moved to the side. It's not like Dad, it's not that I don't think I should cry - I do! I think it would be natural and healthy. But I can't face it. I can't let it out because I don't know if I could stop, how to regain control again once I started.

Words help. Words always help. They give things form, make it possible to turn them around, inspect from different angles, reinterpret the world.

Some of the words -
It's a wood. There is a path. Mo, Kim and all the other medical staff at The Christie showed us that path, explained the obstacles and terrain we'd encounter on the way, but ultimately we'd go from Having Cancer to Remission to Transplant and then to Healthy. That made the cancer far less scary.  I took notes while they talked so I could keep on track, I could hold the information and share it to everyone as needed, so no one needed to frightened or misinterpret or feel lost. We have a path and I have the map safe.

Then there's a huge box in the path. A Pandorica, a Pandora's box, a monolith. It completely fills the path, there's no way past it. And maybe inside the box is Mum, gone, out of reach, locked away. Or maybe it's grief in the box. I don't know. But there's such an enormous block and as I walk towards it I sheer away. I swerve. We're like magnets repelling. I can't get close to it, my self-defence moves me to the side. Then I shut down. Napping, watching telly, sitting in the garden still and quiet for two hours at a time.

I don't know what the correct response to bereavment is, but I don't think this is it.  All the time I have tasks to focus on, I'm just fine. List of funeral directors, research what to ask, send out enquiries.  Research flowers, celebrants, coffins, what are normal processes, who else do we need to tell, what is the next step.

Six days after Mum died I had my long-awaited trio to London (50th birthday present) to see the Royal Ballet at Covent Garden.  At the time I'd have said I had a brilliant day in London. It was truly remarkable, so much sunshine and happiness. There were tricky moments bubbling up, but I mostly revelled in the warmth, the beautiful things, the music, the remarkable building.

As I experienced it I thought I was putting my grief aside for a few hours. However, it didn't work out like that in the long run.

The trip down was great, being handed free bouquet and a book was lovely, the Royal Ballet was as wonderful as I hoped and the Royal Opera House itself is absolutely magnificent.  But when I think back to the day it's tainted by the numbness of trying to keep the grief at bay. Of oversharing and crying at strangers on the train home. (Oh god, those poor women!) Of crying in the shop changing room as I chose my outfit for the funeral. Of the shop worker hugging me, she used to be an oncology nurse. Of pouring so much energy into keeping the door closed on grief I couldn't fully experience anything. The loss was so new and raw.

It was in a fabric printing workshop a few weeks later that it all burst out. We were supposed to be doing a moment of quiet reflection before the next project started, and I cracked. Grief poured out in loud, messy sound. I wailed, I shrieked. I locked myself in the bathroom and howled snottily until I couldn't breathe. It was hideously embarrassing to rejoin everyone, but I did feel a pressure had lifted. At least it hadn't happened at the funeral. Public displays of distress are very much not my thing.

I stopped seeing people. I knew they would want to express their condolences, to talk to me about it and I just couldn't face it. My Very Excellent Mate Kirsty was an absolute rock, bless her, and listened to my babblings for hours, administering coffee and cake regularly. I avoided everyone else, even some of my very dearest friends because I just didn't know what to say. Mark wanted to comfort me but I wouldn't accept comfort, I just wanted to close myself inwards, turn everything off.

Now we're at nearly 3 months since Mum died. Dad's done lots of the admin associated with death, and had to face his loss every minute of every day. It's heartbreaking. I'm so proud of him and I hate that he has to go through this.  I've done bugger all, except help sort some of the more personal items out - emptying handbags, sorting jewellery and toiletries, that sort of thing.  I'm not as numb, but I'm still far from accepting it. I go to ring her regularly. I take photos to send her and remember I can't.

I'm lucky. I lost someone from the right generation - not a partner, not a child but a parent, the way you are supposed to as people get older. I have friends and cousins haven't been so fortunate, and that's been just awful.

I'm lucky.  I had my Mum with me until I was 50 years old. Mum lost both her parents by 38.

I'm lucky. We argued and blew up at each other sometimes, but we had brilliant times together too, and we knew we loved and were loved. Not all people have that relationship with their parents.

I'm lucky. I didn't have to see Mum dwindle and suffer, to lose herself to dementia or be trapped in an ailing body. She was fit and active and relishing life until her final weeks.

I'm lucky that Kate Williams was my Mum. But I don't feel very lucky just now.