Having a bad day

I’m feeling a bit emotional and fragile today. That’s unusual for me. As regular readers of my blog will know my Hickman Line is playing up and not working. This means I haven’t had ECP for over a month and I feel the effects of that. Normally when a line blocks a linogramme is booked and it’s sorted quite quickly. For some unknown reason the request for my linogramme went to the wrong department. Sadly no one in that dept saw fit to return the request or direct it to the right department. This means the poor nurses in ECP have had to do all the chasing on top of everything they already do. 

I finally had a phone call this morning asking me to come in early in the morning on 4 April. It’s so annoying. I don’t cope with mornings very well and they are now expecting me to travel across London in rush hour having not been allowed to eat even though I never have sedation. I also have to take an escort with me even though I won’t have sedation. 

Sometimes I feel so fed up at being prodded and poked and always having to fit into others timetable even when it doesn’t suit me. 

On top of this my PEG has blocked and is stinging. I’m at Kings today so will mention to them and see what they want to do. I feel like crying and hiding under the duvet for a week. Not that it would help things. It’s just sometimes you can feel a bit sorry for yourself. 

I’ve been at Kings for 30mins in the queue to have my bloods taken. There are another 40 people in front of me. It’s gonna take ages. Then when I have the bloods done I will go and sort out another couple of outpatient apps and pick up some lunch. Then I need to be seen in haematology and have to keep everything crossed that the blood results have arrived. 

Tues are meant to be the day I take my beautiful granddaughter to her singing. Despite getting to the hospital 2.5hours earlier than my appointment time, I doubt if I’ll make it out of here in time to get her to her lesson. Children don’t care about illness. They are very egocentric. All she will know is that i haven’t been able to do it again. It’s these things that have a huge impact on family life and create friction. I feel trapped in a nightmare sometimes. 

I know I’m only having a bad day and this too will pass but Oh boy ain’t it time for things to run a bit smoothly...?