Tuesday 1 December 2020

Part 1 of Round 1 Ocrevus done, pink hair and life is good

Last Friday was the first part of Round 1 of Ocrevus - they break the first infusion into 2 parts 2 weeks apart just to see how it goes. 

It was all rather uneventful apart from my natural reaction to the sight of a blood pressure machine which immediately puts my pressure through the roof ..... it took a while for them to get a natural reading from me .... this involved putting the cuff on me letting me nod off then sneaking up and pressing the button which returned normal LOL ..... after they got one normal all the others were fine, it's just watching them roll it over - it's like it's judging me - daring me - laughing it's head off at me .......

A very long day all told, I was up at 5am to drive into London and even arriving at 07:20am I got the last available disabled bay out the front. Nice big well distanced room, reclining chairs which in reclined mode were quite comfortable (not so much so in upright)

My pee test failed (Wednesday's Urology appointment will be asked about that) so they had to do some bloods too which took a while hence it becoming a very long day. I was honestly more worried they might tell me I was pregnant with that pee test - being pregnant at 48 would be very EEK - I'd be retired and a child would still be at school and that's without all the being a VERY elderly Prima thing.

Like Lem it's steroids, anti histamine then infusion followed by a flush, some paracetamol for the inevitable infusion headache because our bodies really don't like having extra stuff dripped into it.

I finally got away about 4pm and drove home, I was quite grateful I'd had the foresight to make sure there was extra coffee waiting for me in the car - cold black coffee isn't offensive thankfully.

I'd slept quite fitfully all week in the lead up to it so by the time I was home and settled I was ready to just settle in for a sofa snooze. It took me until Monday evening to catch up on all that missed sleep but I'm now feeling great.

I've been quite vocal over the years about how much I dislike steroids, all the horrible side effects they have are deeply unpleasant. That said, they do give you a boost, my energy levels (even being so tired) are higher than they've been for a long time, with it my balance feels better and I feel good. It's temporary, I know that, it's just a little boost from them, and I'll probably be picking loads of extra hair out of my brush and bursting into tears randomly temporarily too - why can't they just be nice instead of giving with one hand and taking away with the other.

I spent time on Sunday with two ladies who also have bugger all immunity .... yes I know that's against the rules, but even with Ocrevus running around my system depleting me of B cells - I still have more immune function than they do - when you see what full on chemo does to someone then Lemtrada or Ocrevus in comparison is no more serious than taking an aspirin. We made a decision that with our friend being terminally ill this is where our bubble needs to be - so sorry to family and friends, but this is where I need to be right now.

I'm back for Ocrevus Part II on Monday 14th and hopefully it will be smoother now we've got the first one over and done with - perhaps an eye mask so I can't see the wretched blood pressure machine rolling towards me.

December is here, Christmas round the corner, a few more gifts to sort out and of course delivery of them to those we love.

Oh and just for fun ..... I have pink hair again - LOTS and LOTS of pink hair since it's now so much longer thanks to lockdown so here you go latest scary picture xx

All is well, hope you're taking care of yourself, much love



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