Round one almost done.

It’s been a bit of a crazy week. After having a great Easter and getting a lot of walking in, I spoke to a nurse at the MS clinic on Tuesday morning, my chest x-rays had come back clear and I was able to continue on with the Lemtrada treatment. Very last minute,  it they were able to fit me in to the last two days on Thursday and Friday. 

Here I was again yesterday, back at the infusion room, in my same chair! So half a dose of steroids since they’ve worn off since I was here last, then four hours of infusion. Same again today (Friday) and with two rounds of blood tests. Start and end of day. 

It was really lovely to see the nurses again. Some of them were so shocked I had pneumonia and said I didn’t look sick or show any signs of it. I keep telling them, I didn’t even feel sick.  It they’ve been great and are a really good bunch of people. You know nirses have yo love their jobs. To do what they do, to get paid so little, is beyond me. They do so much more than my specialist does, and he’s the one who gets the most money for it. He hasn’t even been past. 

One of the other things which has been amazing here, is meeting all the other people in the same boat as me. We’re all in the same position, although some are worse than others.  We’re all fighting the same monster. We all have our different mechanisms of coping. Even during these long Infusion days. I have the iPad on which I’m playing a few games and talking to a few people (and writing this). Others have their movies or shows they are watching. I’m currently sitting next to a woman who is as addicted to Harry Potter as I am. She has watched the whole box set this week. 

The side effects of this are terrifying, but I wouldn’t change having done this for the world. There are far more positives of this than potential side effects. I’m looking forward to being able to get back to walking long distances again, without having to stop to rest my legs. I have noticed with this treatment my taste buds have changed. Am hoping it’s not a permanent thing.  I am also back on the listeria diet for another 4-5 weeks. Just as I was about to get off of it, I have to get back to being careful. And I was very much looking forward to some soft cheeses and a good steak. So when I am off this, we will be going to a nice steak place to gorge on steak, quite possibly with blue cheese sauce. So this now means my birthday and our wedding anniversary dinners will need to be bland. 

So that’s it. I get through today and I’m done for 12 months. Three days next year, and hopefully it will be all I need. Blood tests every month for the next four years. I can manage that. 

Arohanui 

J