My third course of Campath (Alemtuzumab) is over and I am now back home from hospital. Yay!
The last three days have been a humbling, bonkers, strange experience. Third time around, you kind of know what to expect. And yet, I didn’t. Not really.
When I checked in on Monday morning, I felt like an Experienced Patient as I was shown to my bed. I unpacked my two pillows (essential), my blankie (a must-have), a selection of healthy snacks (mostly left uneaten once the steroids kicked in), a pile of paperbacks (overly ambitious), two towels, an array of miniature toiletries and a pen and notepad. Sorted.
The first surprise was being sent for an MRI before the first infusion. Ah. Right. Didn’t see that one coming. No time to go through my deep-breathing-yogic-anti-claustrophobia exercises, so I happily accepted half a Diazepam.
I therefore floated down in the lift, through the MRI waiting room and gently bobbed towards the hard plastic tray, humming to myself. Then afterwards, floated back up again, ready to be hooked up for the first lot of steroids and then, after being flushed through (really), the Campath.
So far, so good. Then, the same thing happened as before; that all-consuming, incredibly painful, every nerve ending on fire sensation, when the Campath first hits your system. I crawled into a ball and held my hand out for anti-nausea tablets and painkillers, whimpering ‘this too shall pass‘ to myself.
It passed. I ate a lot, read not a lot and dozed on and off. Luckily I had a steady stream of visitors who kept my chin up and brought me even more carb-laden snacks to feast upon. At the end of the first day, I was flushed out once more with saline and unhooked. It was 7.30 pm. Gah.
The second day was pretty much the same, although without the painful Campath-Hit thank goodness, but then the steroids did their job and kicked in. So I spent the second night wandering the corridors, eating toast with a nurse at 4am and offering to help clean some tables. I had a crazy amount of energy and had already packed and unpacked my bag twice.
This morning, after two hours sleep, I went bleary-eyed to the hospital Starbucks before my infusion and started hallucinating. I could have sworn I saw The Boss moving determinedly towards Starbucks at exactly the same pace as me. I stopped and stared. The vision stopped and stared. I waved. It waved. Gah. It really was my boss. He’d done a pit-stop to buy me a coffee and muffin before heading to Screwfix. As you do. It was lovely and we had a good old catch up, slurping away on our lattes, just as if I was back in work.
Third infusion and I realised, not just how lucky I am to have access to such an incredible treatment, but that I no longer have that same level of fear. If that makes sense. The first two rounds, I was fearful of the future, of everything. Now, I feel much more in control. Which is odd as it is my re-activated MS which sent me back here.
Anyway, now I am home and I have used up the rest of the steroid energy by sorting the house out, ready for the inevitable crash.
Tomorrow is another day. But at least the fridge is stocked, the bins are emptied and I have a huge pile of paperbacks to get through. Result.
You’re so lucky to have access to an effective drug!! When I was diagnosed I was working in Japan and went to the US for the diagnosis of ms. I didn’t believe it ’cause I felt fine. Now it’s 2015, spms has kicked in and I’m too old(!) for dmd or bioavailable hormone therapy. What’s left? Ever so pricy stem cell therapy? Tried it a few months ago and it was good. Now I need my fairy godmother or sugar daddy to please buy me some more.
Love your writing. Take care!
Wow, thank you so much for your lovely comment, but sorry to hear your story.
I always remind myself how lucky I am, not because I’m big-headed, but because I truly realise just how fortunate I am to have been living in a place where my hospital took part in the first trials for Campath.
I am now reaping the benefits of a whole lot of people who went before me, without a lot of the information I now have, so I am eternally grateful to all of them.
I really hope you will find some sort of treatment?
Bx
Take care xx
Thank you!
I will try 🙂
x
Keep it up lass!! 🙂 you’re doing great! 😀
Aw, thank you!!
X
Good to hear the treatment went well.
I haven’t heard of anyone else experiencing pain as the Lemtrada (the current name for what you call Campath) is infused – what rotten luck.
Hope it all helps and your symptoms recede to a more acceptable level. Don’t try to do too much all at once!
Missed your posts while you were ‘away’. Take care xx
Thank you! Missed writing the blog too.
It’s a weird sensation, that Campath ‘hit’ and yup, get it every time :-(. But in the grand scheme of things, it’s minor!
Today the steroids have definitely left the building and have just managed to escape the sofa. Onwards and upwards though.
x
It sounds like you’ve had a terrible time. I know we don’t know each other but I’d like you to know that I’m thinking of you. I think you’re doing brilliantly xx
Thank you so much!
It’s been a trying first day, post-hospital, but am so lucky to have great family and friends around. My sister just drove down from Birmingham this morning and took me out for lunch 🙂
X
Wow, thank you for sharing that wonderful piece of writing x
Thanks Kiran!
X
Well done for getting through it again. Really pleased for you. Hope the nurses were nice. Hope the next couple of days are ok. X
Thank you!
The nurses were amazing and luckily I had the same one as the previous two timés. Plus my MS nurse came up each day to see me and even my neuro popped in. I was totally well cared for. Got to hand it to the NHS!
X
nice to see you considering the circumstances. you did look well from where i was standing 🙂 – hope this time it works for you. x
Thank you, you’re too kind! It was great to see you too, shame we didn’t have much of a chance to catch up.
Fingers crossed this round lasts a bit longer than last time. Feeling completely rubbish right now, but it will pass 🙂
x