T Day

It’s Day One. It’s finally here and I was nervous as anything. 

We woke up and got ready and packed my day pack with all the necessities; book, iPad, headphones, water bottle, snacks, colouring book and pens and the very important strong no mints for the steroid taste! 

On getting to Charing Cross we were greeted by a nurse and told we couldn’t go in as the room was still locked and they were understaffed and waiting on additional nurses to turn up. Bad start. 

Second bad start was not finding any of my veins to get into. And this after drinking copious amounts of water for the past couple of days. I ended up hiding in the bathroom to do a few wall push ups to see if that helped. It worked! 

Blood tests done and I was ready. A saline push then the hour long steroid. Steroid finally went in about 10:45. Another saline wash and finally the grail of drugs! The Lemtrada. Four hours to sit and do nothing. This went on just after 12. 

My headphones were a godsend as it meant I could block out bad day time TV, including Neighbours, Home and Away and TV movies! 

It gets a bit much after a while, doing nothing. Finding things to keep you occupied and entertained. A bit like flying for long periods of time. You think I would be used to that by now. 

The metallic steroid taste was pretty gross. Thank goodness there’s only two more days of this. 

The nurses have been brilliant and easy going. They must be so used to people on R1 D1 not knowing what to expect. I almost got my first blood pressure spot on. It was 122/74. I guessed it to be 120/73. Not far off. I finished on 111/65. Still in range but a lot lower than the usual. 

I started my lymphocyte count on 1.5. It’s dropped from January, which is a little strange. Be interesting to see what Day 2 is like. 

So the listeria diet started hardcore today! Fish and chips for dinner since we are in a hotel and hard to figure out what is safe and not. And it’s even more stricter than the pregnancy diet. :( very hard core. 

The amount of people who have messaged me on Facebook or messages is amazing. My heart is overflowing with the amazing support I have around me. And my husband, Tony, the support and city driving you are doing is amazing! Thank you from the bottom of my heart. 

Bring on day 2.