annanotbob2's Diaryland Diary

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All this too

These are the other bits from the blog around the time of Sam's death that I've chosen for the display at the grief event:

1. But now I must go to bed. The girl is OK, though I am getting mixed messages from staff so I'm going to demand a doctor's visit. One said, best not plan a birthday party too far ahead, with only two weeks to go till birthday, and another is saying let's get tickets for a gig in October/November. I can't be doing with hope, hope is a cunt that kicks you when you're down.

2. it's Sam's birthday on Tuesday and I don't know how I will not just sob and weep and howl all day like a dog.

1. What wasn't so good was the morning. I'd finally decided to get her a quality soft toy from M&S, but when I paid for it the cashier said, "Ooh, someone's lucky, getting this!" Which sadly just sent me straight into meltdown, loudly, incoherently, in the middle of Marks and bloody Spencer, first thing on a Tuesday morning. The poor woman was only being friendly, but the idea of Sam being lucky was more than I could bear, for a moment or two - long enough to give chapter and verse on the ways Sam has been the opposite of lucky - before getting a grip, wiping my tears and snotty nose on my sleeve, apologising and fucking off double quick. Awful. It came out of nowhere but had obviously been sitting there, primed, just below the surface, waiting for the starting pistol. Which is quite enough of a mixed metaphor for one sentence

4. In Waitrose just now, I bumped into a nurse I recognised, and who recognised me, from St Barnabas (the hospice). She very seriously asked me how I am, how are 'things'. I told her that things were good, that somehow Sam didn't die and is actually as well as she's been for ages and her face lit up like the sun bursting through the darkest clouds. Ah, it was wonderful to see and to feel that joy - for us it's been a creeping, day by day, realisation that Sam's still here, still with us all these weeks and now months later. No guarantees, in fact an appointment with the urologist looms, but hallelujah and hooray for our Sam

5. In order to not think about any of the difficult shit in my life I've run around like a demented idiot all day today. Then I found myself blurting out a poem on twitter in response to a tag about loss.

MS stole my daughter

She hides in her body
Silent
Unmoving

Except her eyes
which follow me
As I fidget around in her room

Wishing these nightmare days will never end

6. She was smiley, in her usual vague way, but cool. I never thought I'd be able to take comfort from such tiny things, but it's been over four years now, since the MS took her so far down, and in the end you do just get used to it. The thing that really stirs me up is when someone posts a story about a cure for MS, none of which are ever true, but if I let myself imagine her being cured and coming back to us, I can't escape how much she and we have lost. But hey ho, she's still alive and smiles sometimes, which is better than it could be.

7. Sudden jump to Aug 2019 Bad, and getting worse. If I don't keep my mind busy all I can think is wanting to shake ED, to grab her by the shoulders and shake some sense back into her, to shout at her to stop pissing about and just come back, come back, come back. I could smack her, I'm just so angry so tired so broken at the endless hours sat with her, or not sat with her, feeling I should be, unbearable to think of her alone, unbearable to do anything, but somehow still able to be distracted, especially by a stupid word game I have on my phone. Then the stats came up - I've been using the phone for an average of seven hours a day this week - fucking hell, seven hours. I am just broken and don't know how to mend myself.

8. I've not known how to live this week. I wake up and phone the care home at once. Sometimes how they speak makes me rush down there - not because they've said she's worse but because I think they don't love her enough, but when I get there she's asleep so I sit for a bit, or wander about being a nuisance, then decide I have to keep living my life, so I go off and do things. Today, as well as going down there three times I've been to a yoga class; picked up tickets to see Hannah Gadsby; met my writing mentor to discuss this fucking free read of my work I'm still in line for; went for a drink in a wine bar (I know! Me!) with the ex-manager of the care home, got a bit pissed on one (big) glass of red wine with lemonade because I am now such a fucking lightweight; gone to the private view of the art exhibition at the 'other' recovery centre and made four quid from my postcards. 

9. The care home is in the centre of town, with a small courtyard and nowhere to cry in private let alone sob. Yesterday when the therapist came to give ED some reflexology I went for a walk and stepped out of the home directly into British-cheap-holiday-land - loads of fucking people, all laughing and pissed and shouting and I nearly exploded with the awfulness of it all. I ended up standing facing the wall of a shut down shop, crying and crying as I couldn't keep it in and there was nowhere to go with it. I was ignored by everyone - they probably assumed I was some piss-head - but it was terrible and made me feel it would be even worse if we were here right through to the end. [This was written the day before she died – there’d been a big meeting about an end of life plan]

I'd sent this to J, my therapist, as part explanation for why I'm so tired and had decided not to do EMDR this week, as I feel too vulnerable. This morning when I arrived for the session J said it had made her cry, reading it. Yeah, made me cry too. I'm going to try really hard to look after myself properly at last until after the grief event on Tuesday as I'm quite done in. To this end I emailed this file to Bloke and explained that this was what was making me feel so emotional. Just now I asked him if he'd read it. Yes, he said, quite indignantly. But you didn't say anything! He never does say anything. He never said anything or asked anything while all this was happening. I try not to expect him to, but it is hard.

And I'd made dinner this evening, being supportive of him, or trying to. His radiotherapy is going along, seemingly OK, but he's tired, hence me making dinner. I had a brainwave about all the carrots and courgettes we got in the veg box this week and made a big batch of spicy fritters, with a yogurt sauce and a potato salad with the mad mayo I finally managed yesterday (though Bloke did a lot of the whisking). bright yellow and very strong flavour of extra virgin olive oil, OK but a bit alarming looking. 

Tomorrow I'm meeting with H, a bereaved swimmer, to rewrite the song. It took me ages to listen to it properly as I was overwhelmed at the whole thing - it sounded amazing as SJH has such a fabulous voice and had written perfect music. I just cried and cried until yesterday when I listened properly and realised she'd made a few little changes and found a chorus which was just wrong, didn't represent where we are now, any of us. It was so hard telling her this - I mean, how rude - so I dithered and panicked and made myself do it. I texted to ask if I could call and we had an honest but kind chat and all is good and he'll do a new recording when we've rewritten it. Amazing. 

11:28 p.m. - 17.05.23

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