So, I cracked.
It’s been a rough few weeks so apologies for not putting a post out last week. I can explain: I was hiding under my duvet. I’ve mainly been there for the last few weeks. It turns out I reached my breaking point with all of this and needed some time out.
I reached out to everyone who could help me in some way including people who know neurosurgeons, my GP and my MP.
And it’s kinda worked.
The MP wrote to the neurosurgeon and I got a call from the team. My neurosurgeon needs surgery himself and will be off for a long time. His patients are being allocated to other neurosurgeons and they all have long waiting lists. The allocation meeting hadn’t taken place and no idea when that would happen. There was no timeline for me. I have a lot of questions about how this whole thing has been managed and how I’ve been lied to.
I wrote back to my MP, letting them know the outcome of the call. They followed it up with PALS. This is a really useful service for patients and they act as a liaison between you and the hospital. We worked with them initially when there was a mess around departments and appointments.
A neurosurgeon who works in the department has been advocating on my behalf as well. The allocation meeting happened. Now I get to meet my new neurosurgeon next week. Hopefully, I’ll get an idea of timelines. Some dates have already been suggested but I’m trying not to think about it. We’ve been through this already, dates suggested and then nothing.
Fuck, this is such a rollercoaster.
It’s wearing on everyone; I’m pretty sure my friends and work are sick of it. I am. Just want to be on the other side and in recovery.
Meanwhile, I’m stalking my new neurosurgeon. Scary universities, happy to take on complex tumours, and has some interesting specific interests that relate to my situation. I hope it works out.
Anyway, good things that have happened recently:
I left the house
Drank a cocktail
Managed to get last minute tickets for Aunty Donna. So worth it, despite being in the gods.
Walked on a beach
Spring bulbs have arrived for planting! Gone with more daffodils, muscati, crocuses and a white flower that I don’t remember ordering but looks like a star. Thought some early flowers would cheer us up in the dark months.
Rewatching Stranger Things. Completely forgot about Bob. Poor Bob.
Here’s to some good news soon…
Claire x
Oh god the not knowing and it all falling through and the not knowing. So many hugs for you. Glad your MP is on the case for you. Well done for reaching out. Even that in itself is draining. So glad you have a named surgeon now too. My thoughts are with you. xxx