Well here is my update for those who like to keep up with me and hope and pray in the background.
I came out of hospital on thurs after 4 weeks and 3 days incarceration in that tiny hot room.
Friday night, much to the shock and surprise of my long suffering partner, I asked to be taken to A&E. I never voluntarily go to A&E so it just shows what a state I was in. The problem that took me there was the most excruciating all over itching I have ever experienced. I was beside myself. I couldn’t talk or sit still. I tried to get in the bath with my PJs on. I got in a cold bath but it didn’t help. I wrapped my legs in wet towels but that didnt help either. I used cool packs from the fridge, moisturisers and steroid cream - nothing worked. I doubled up on the very strong anti itch medicine I had been given before and even that didn’t stop it. It took 6 hours of agony to subside. You wouldn’t think such an innocent thing like an itch could create such a huge problem. I’m now having to take so much medication to keep it at bay that I can’t drive. I’m finding that really difficult. If anyone has any tips for dealing with extreme itching I’d love to know what works for you.
I’m managing my feeds at home relatively well. My biggest problem is I have to have 1200mls but the bottles only come in 500mls. This means a change over in the early hours. It’s like torture having to wake every night. Like having a baby, sort the feed then back to sleep! Lol
Tomorrow I’m having a new Hickman Line inserted. The one that was removed is healing nicely. I can’t say I’m looking forward to it. It’s like being stung by a swarm of bees as they give you all the local anaesthetic injections. I had 5 to get this one out. Each in a different place so you feel each one. I wonder how many it will take tomorrow?
I am also going to be reviewed by the haematology team and will hopefully know whether I can go on my planned holiday to Ireland. Please keep everything crossed that every aspect of what i must endure goes smoothly.
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