Archives For grenfell tower

The 16th of June. 

I have a tiny bit of good news. I gave the ciclosporine eye drops another go last night, fully prepared for it to be awful again. But it was fine. It stung a bit, and first thing this morning was a bit tricky, but it was so much better than last time. So now that extra line of treatment for my eyes is up, let’s hope that helps. 

So it’s been a quiet day. I wrote up a blog post this morning and this afternoon I did some podcast listening and redid all the crochet I’d had to unravel. Now back to where I was, I can try to finish. Will have to do most of it tomorrow because on Sunday, new kitties come, so I will be super distracted. I need some tiny floofs. 

The more that comes out about Grenfell, the worse if gets. The Queen and Prince William visited victims today, Theresa May only went to the hospital where she could control the narrative. Then she goes to a church but nobody sees her and she sneaks out of a side door. No council-lead support; everything is being done by the volunteers. Everybody in power is doing the bare minimum, sometimes not even that. It’s inhumane. 

The 17th of June. 

So hot. So bright. Being on Voriconazole means I’m not really allowed to go in the sun (it majorly increases the risk of getting skin cancer and since we know someone who did get it because they didn’t know, I’m not taking any chances), so I can’t go outside and enjoy it, but even if I could, I’d be so photosensitive, I’d be blind. I miss being able to see without pain. 

It’s been mainly a day of crocheting. Want to finish the doily. And I’m doing very well – I’ve got one round left. Although focusing on tiny crochet hasn’t been great for the eyes. Finish a round, have a rest. Lots of drops. 

Very little to say. I iced some cakes and put sugar elephants and ducks on them. I climbed the stairs and it was fine. That was a really good feeling. It’s been so long since I didn’t need an immediate rest when I got to the top. 

The 14th of June.

It feels like we are just lurching from one tragedy to the next at the moment. Every week there is another atrocity, and it seems every single one is political. There is no doubt that the fact that this is a deprived area with poor residents, and that things have been done on the cheap will have made it worse, and the fire service were unable to tackle the blaze as effectively as they might have because they’ve been decimated by the cuts that Boris Johnson made. Heaven forbid there was a fire anywhere else in London. Just last year the Tories voted down a bill to force landlords to make buildings suitable for human habitation (surprisingly, 72 of them are landlords themselves), and Theresa May’s new top aide has been sitting on a review of fire regulations for months. They kill people. Every day. 

I had haematology clinic this morning, which was not enormously productive. I saw Praveen and updated him on my current circumstances, and he emailed Andrew. The most important thing was that we get some drugs, because my prescription got completely messed up when I was in.

I spoke to Emelda, Andrew’s secretary, and she has assured me that the paperwork has been sent and I should get a date for my next venoplasty very soon. I really bloody hope so; it was super warm today and I want to be able to show my arms without feeling like a freak . 

This afternoon, I hid from the news. I put on a sheet mask, watched Pretty Little Liars and iZombie, crocheted. I am lucky that I am able to escape from it. I can’t imagine the terror felt by those on the upper floors; if I were in that situation, I would find a way to kill myself. Absolutely petrifying. 

The 15th of June. 

I’ve been awake on and off since just before six this morning. It was too hot. Not surprising when you consider I still had my winter duvet on – it has been changed now so hopefully tonight I won’t be so warm. 

Quiet morning. Breakfast, coffee, then out to Black Sheep to get my hair cut at half twelve. Michaela was delighted by my FucktheTories necklace and immediately called Danyl over to see, who was straight in for a high five. I have decided he is going to be my colour guy now. Booked in with him next week. My hair was getting pretty long, so we decided to chop off all the back and sides. There’s only so much that can be changed when it’s this short already but Michaela can always come up with something. 

As I was leaving, I went to get in my chair and there was a lady sat by it with a great little chihuahua called Dolores. She was also a fan of my necklace and we had a photo together. 

Got home shortly before two, and this afternoon I have been crocheting, then unravelling because I changed colour and the new thread was thinner, so it has made the whole doily curl inward. Redo with a thicker one. The fluid in my arm makes it ache.