The beginning of the end in The C Word

What a couple of days.

Christmas was as nice as it could have been under the circumstances, we did the running round in the morning, V and I opened her presents in our house, she had time to play with her toys before we had to go to Joey’s.

I stayed for her to open her presents from him, then he took her to his parents and I went to see my grandma. I’m struggling a lot with the injustice of his mum being the one who’ll watch V grow up when she shows no interest and makes no effort, and my mum absolutely adores her and won’t be here for any of it.

I called to the hospital to see mum and Joey dropped V after his mums. Mum was able to have a really good visit with each of the kids yesterday. V sat on the bed with her and they had a cuddle. She told her she loved her, and mum teared up, so obviously in turn so did me and my dad. She knows she’s going to miss out on it all, it’s the first thing she was worried about, V is her first grandchild, we lived with mum and dad for 9/10 months from when V was 4 months old and they just think the world of each other. I’m sad for V that she’ll miss out on that relationship with my mum too.

I think we were all relieved to get to mum and dad’s house. My brother and sister, their husbands and wives, the three kids, and my dad came home for presents and Christmas dinner before returning to the hospital. The kids played nicely, and were both in bed by 8pm. My little niece was good too, she’s only 2 months old and she went to bed too. We sat around chatting and had a couple of drinks, just the 5 of us. We foolishly stayed up until 1.30, we haven’t really had much of a chance to just sit and chat, it’s been so much rushing around and shifts to visit mum. V was up at 6am this morning and I wish I’d had more than 4 hours sleep!

Dad messaged at 10pm last night to say mum had spiked a temperature. She had had IV paracetamol and settled again. Phone was on by the bed but it seems they had a fairly settled and peaceful night, although her temp was high again this morning and she was sick. She’s had a syringe driver with pain relief, anti anxiety meds and anti sickness meds for a while now, to try and reduce her oral medication as she was taking a ton of tablets and struggling with them. She’s had extra anti sickness medication and they’ll likely increase the meds in the syringe driver today.

The doctors came to cast an eye over her and she told them she just wants it to be over, she doesn’t want antibiotics starting. I think while she loved seeing the kids yesterday, it really hit home just how poorly she is and that she probably won’t see them again. She desperately wanted to see them and asked to see them but I think it was also really difficult for her, I can’t imagine what it must be like to love people so much and know that the time is fast approaching when you have to leave them behind. She’s ready now I think, she’s seen Christmas, we’ve made the best of it. She missed the kids last year too because she was in having the transplant so she was determined to see them this year.

It’s such a weird limbo to be in, where you don’t want to say goodbye but you also just want it to be over quickly. We desperately don’t want her to suffer or linger. We’ve been lucky to have a really good week last week with her, and a fairly decent one this week.

Dad is there right now, I said I’ll swap a bit later if he wants to try to get some rest, have a shower etc. He has got a recliner chair but said he woke up every hour worrying. He wants to wait for the doctors, they’re round each morning, then see what he thinks after that about coming home for a bit. I hope it’s not long, I hope she goes quickly and peacefully. I hate that it’s happening at all but it is, and we can’t change that unfortunately.