Well it’s deja-vu time again! It’s the end of half term and I’ve got two days to go before my second round of Lemtrada. I had round 1 on the 25th of February 2018 for 5 days, this time it’s only 3 days thankfully and then hopefully that’ll be it for quite a few years!
Lemtrada/Alemtuzumab is a repurposed chemotherapy drug, it’s a much much lower dose than would have been used with chemo but still carries some fairly dangerous side effects. As a result, you are watched very closely whilst you have the dose in hospital (monitored every 15 minutes for the first hour of the actual drug and then down to every 30 mins for the next etc) and you have to have monthly blood tests for 6 years to keep an eye on your levels.
With two days to go before I get “plugged back in”, I’m busy food shopping and batch cooking like I’m preparing for the apocalypse. Not that I don’t trust Jonny’s cooking (although we’ll gloss over the risotto disaster whew he threw everything in together all at once and THEN read the method!) but looking after me during treatment week is hard enough work anyway, so I’ve working hard in the kitchen and also enlisted the help of our wonderful parents to get a weekly menu of homemade microwave meals sorted. Both freezers are absolutely rammed with food to last us for the next 3 weeks. In case anyone needs some batch cooking inspiration we have:
Moroccan Chicken, Beef Chili, Sausage casserole, Thai Chicken curry, Cottage pie, Cape Malay Curry, Courgette and Tomato soup, Pulled pork, Lasagne, Leek and potato soup.
Everything just needs veg, rice or couscous adding to it, and the ones that need mash are pre-frozen with the mash (last of my potato hoard from the summer.) I know frozen mash sounds gross but actually if you season it well before freezing it’s still passable. FYI, Cheese and chive mash freezes well, as does mustard mash.
So I’m ready, mostly for next week. I probably don’t have enough snacks to combat the steroid munchies but perhaps that’s a good thing as I managed to gain nearly a stone in treatment week last year!!
This year I’ve invested in a pair of Bose noise cancelling headphones as the neurology ward can be very noisy and with the steroids keeping you up all night, it’s good to sleep during the day! I didn’t buy new as they had a good secondhand pair available online at CEX for about half the price, so I’m rocking the QuietComfort35 model which does very nicely!
I’ve also stocked up on extra strong mints again (to take away the steroid taste) and a travel sized squeezy squash to add to my water so I drink enough to flush all the dead blood cells out.
Entertainment-wise I’ve just discovered 5 on demand (My5) which is a whole new world of absolute trash TV, (I love a fly on the wall documentary or terrible reality tv programme!) Plus I’ve got some good books and colouring books to get through. Sorted!
I have the cannula fear again after having had 14 vials of blood collected in 7 days due to a blood test muck up. My veins are not the greatest when they’re healthy, and right now they’re particularly unhealthy. My favourite phlebotomist Jane describes my arms as a garden full of weeds, I.e you have to navigate through the scar tissue/weeds to get to the good stuff. Lovely. Hope you’re not all wincing at the thought!
I will post a bit more throughout next week, I’ve decided I must be a seasonal blogger. It’s a bit tricky to type when you’re working full time but with several weeks ahead of me off for recovery, hopefully I can be a bit more of an active blogger.
Claire x
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