Round 1 – Day 1

Arrival 8am. I’m here! The chair is comfy and by arriving early I have bagged a window seat so I have a tree and some sky to look at 🙂

10.30am – Observations done first, and some bloods taken. Cannula inserted and flushed – a bit uncomfortable at first but I’ve got used to it now… Steroid IV finished. Two paracetemol quaffed. Short delay getting the alemtuzumab from the hospital pharmacy, but this has arrived now and the nurse tells me they will hook it up at 11.15, an hour after the paracetemol.

A volunteer lady brought me a cup of tea and I’m steadily sipping water too. The day unit is busy – loads of people here, mainly MS patients for Tysabri I think – but nobody else on alemtuzumab. I’m sitting in the corner, people-watching and eaves-dropping while everyone else chats. (If I were a chattier person I would join in!)

Glad of the mints as the steroid taste kicked in within perhaps 20 minutes of hook-up. I’ll break open the pineapple juice in a bit.

1pm – piriton in the arm at 11.10 – but the cannula needle had shifted so it skipped the vein and went directly into the tissue. Ow! The sister reassured me that it will still work, and the drug was absorbed into my body within a couple of minutes, but injecting 1ml of fluid straight into tissue hurts! (Yes, it does.) Cannula moved to my hand, alemtuzumab drip went in by 11.15am, still chattering away now.

Really bored now, and feeling a bit groggy. Was offered sandwiches for lunch but nothing I could actually eat – they must have run out of edible ones before they got to me. And the nice lady with tea hasn’t been back either…

Bag’o’snacks it is then – will bring a packed lunch tomorrow!

3.30pm – The drip is out, and I’m told I can go home at 4pm if all is well. Thank goodness, I am proper fed up now! The steroid-induced emotional rollercoaster has kicked in, too – had a few brave tears this afternoon. And my comfy window chair is in direct hot sun, so you can add hot and grumpy to the list of feelings I am having…

The MS nurse came around about 2pm with a sack’o’drugs – antivirals, anthistamines and an industrial pack of paracetemol. Popped a couple more paracetemol straight away as I was feeling a bit rubbish – that sort of lower-back pain that presages flu-like achey fevery headachiness – so familiar from my Avonex days! – and better safe than sorry! The back pain has receded but I still feel groggy and tired, can’t concentrate on either a book or my downloaded Doctor Who, so very bored…

BUT no significant reactions and no rash. I feel well enough for the walk home as soon as they let me go!

10pm – been home since before 5pm – the walk home was hot and tiring in July heat, and I had a few more tears on the way – overcome in the park by a fit of rage and despair. Good thing I was alone or I might have sobbed or shouted at someone! A brief lie down and cool off at home saw me right, though, had all my evening drugs – still groggy and having a rubbish spell of double-leg-twitching, but otherwise fine. Amitriptylene early (6pm) but still no sleep! Steroids suck.

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