So the day starts of awfully slow. I’ve to be at the hospital for 10am. Who would have thought parking at a hospital with 4 car parks 2 of which are multi stories would be so difficult!
We must be about 15 or 20 minutes late because of this. But I have a feeling it won’t really matter from what I’ve heard from others as I’ll probaby start around 2pm. Around about 10.30am I’m checked in officially and asked all the usual hospital questions.
I’ve to provide a sample, I’m getting desperate so that’s not going to be a problem. Then they will phone the lab to get the treatment set up. Apparently it’s £1000’s for the medicine so they want to make sure we turn up and are suitable for the treatment before it’s made up. This should take a few hours.
I have to say day 1 has been pretty uneventful. The cannula was put in, saline solution flushed through, and then the steroids around 2pm. No one can prepare you for what the steroids taste like! I had sweets and mints from advice of others who complained of the same issue.
So around 3.30 I was ready to go, my first dose of lemtrada. What a boring day. Nothing really happened, there was nowhere to go! I had to just sit still and wait. It takes about 4 hours and then another saline flush. So I was finished around 8.30pm.
The only difficult I really seemed to have was every time I moved the cannula would start to bleed. But I was assured this was okay. I got a touch of a sore head. But I’ve blamed the strip lighting rather than the lemtrada for this.
I had 30min ish observations. It was our job to remind the nurses to take these obs. Just blood pressure and temperature. But I think this made the whole process feel slower as I was watching the clock for every 30 minutes coming around. Without this I could have tried to loose myself in a book or even rest. I didn’t realise when this was my only job how difficult it would be. I kept forgetting when it was supposed to be. It wasn’t until later that I realised why this was confusing me. We agreed I would call the nurses at half past and on the hour. But by the time they found a machine and did the readings it was quarter past and quarter too. This then messed up the next time unless I called them back through 10 minutes later.
Already my days and hours are rolling into one. I’m not sure how I managed to pass the whole day yesterday. I know that I read for a little while. Chatted to the others on the ward, played some games and spoke to a few friends, family and my youngest on the phone and via text. Well hopefully it’s a good night’s sleep and on to day 2.
Drinking fluids is important through this treatment to prevent headaches. I can’t say I’m trying to drink more but I am thirty. I thought it might be useful to record how much I’ve drank each day. Day 1 – 2lt