Lemtrada Days 1&2

Bit of a delay on posting this due to a hectic few days but I thought I'd better jot a few things down tonight!

So I have just completed 2 out of 5 days of Lemtrada (my chosen MS wonder drug) and I'm pleased to say it hasn't been as scary as I thought it would be.

Last Friday I pulled the full waterworks on poor Jonny mid-way through a film we were watching called 'Bright', I think there was a needle in a scene somewhere and I just lost it - all the fear came out in one big outburst of seriously primal crying. Good job I'm already married and not in the attracting a mate stage any more - this was enough to send anyone running for the hills! Jonny was great and just held me as I let the waves of panic, grief and just sheer terror wash over me. I wailed for about 20 minutes and then was fine and we watched the rest of the film. Brill.
I think it was probably the result of bottling things up for quite so long. I'm proud to be seen as strong and very 'matter of fact' about my MS and Mum's Cancer journey but actually sometimes you need to show the vulnerable side too. In fact I once really upset Mum because I made sure NOT to cry in front of her every time she had bad news about her cancer progressing to the point where she thought it just wasn't affecting me. It really was, I just chose to wail at home! We do sometimes cry together now but she's my inspiration and she knows that now. We were lucky enough this week to have the fantastic news that she's being offered more Cyberknife treatment at St Barts for her Brain mets and possibly immunotherapy and a drugs trial - this all happened on Monday, the same day I started my Lemtrada treatment, it's been tense I tell you!
So yes, a real inspiration for me. 3000 steps on her step machine is apparently the key to battling metastatic Breast Cancer and fighting hard every step of the way. Love her :-)

Anyway sorry Mum, back to me! 

So after an awesome surprise 30th birthday party on Saturday (Thanks Jonny!) I spent most of Sunday prepping for my treatment. I packed my bag with lots of things to do, most of which were presents from my friends such as colouring books (I've never tried them until this week and my goodness are they good), word games, puzzles and things to read. 
I also packed an absolute mountain of food, in my usual 'Barbara' fashion I was roasting mixed nuts with garlic and thyme at 9:30pm Sunday night and decanting tinned pineapple into tupperware containers ready to combat the nasty steroid taste, as you do! Mum and Dad also kindly gave me a cosy throw and a cushion to take in with me which I have very much made the most of.

Sunday night was a pretty patchy night's sleep but not too bad, up bright and early at 6am ready to leave at 6:45am to get to the JR with our brilliant Chauffeur for the week Glyn Rees (my friend Sid's Dad who is the most lovely chap and has a huge fan base in my family as he's an ex RAF Pilot with a pretty star studded list of planes that he's flown!). The trip to Oxford was reasonably quick, (cheers A40) and after a few sessions up and down in the lift where I cursed myself for not writing down directions to the ward, we eventually found our way to the Neurosciences ward, room 23. There I met our two wonderful nurses Pete and Christine and my Lemtrada buddy Pete and his partner Sue. 
We all clicked instantly which has been my saving grace this week, it feels like a real team and I actually look forward to going into the JR each day because I feel so well supported.

Day 1
I was pretty tense about the cannula being put in having only had one once before, but it went in like a dream, hooray! The Doctor actually asked me where I wanted it which threw me a bit, (should've thought of a witty response for that one, maybe tomorrow!) but I had it in the crease of my left elbow. To those of you who are squeamish - I PROMISE I WILL NOT POST PICTURES! We signed upteen consent forms and as both Pete and I had agreed to be part of a clinical trial, we also had to complete quite a few questionnaires and a brain puzzle. I took the puzzle incredibly seriously (a timed codebreaker) and properly went for it which took the researchers a bit by surprise I think! LOVE A PUZZLE! Not bad for a fairly foggy brain. They and my husband were impressed!

We had an hour of steroids which tasted of metal but this was quickly eased by extra strong mints. Other Lemtrada patients had recommended Pineapple which did ease it a bit but nowhere near as well as the mints. Then a half hour break, time for a quick wander down to Pret a Manger and breath of fresh air before it was back up to the room for a dose of IV pirition and a flush to clear the system. Then at 11:49 we got our first dose of the good stuff- Lemtrada! 

At £9,000 a bottle (1.7ml in a dilution I think?) every drop is precious so it does drip through slowly. On day 1 it took 4.5 hours. I had to have regularly stops for loo breaks as I was drinking like a fish and downed 2.5L of water on day 1, woohoo! We had 15 minute observations for the first hour, which includes blood pressure and temp, then down to half hourly and finally hourly. It does make it hard to sleep but I had hyperactivity brought on by the steroids all day and found myself jiggling around and practically doing chair aerobics rather than sleeping anyway.
- By the way, if this blog post is more fast paced than usual and lacking in punctuation, it's because I'm still pretty hyper now!
Lemtrada finished at 4:15pm and after 2 hours of further observations and a saline flush, it was time to take the Cannulas out and send us home. I was pretty wiped by that point and very much ready to collapse in a heap on the sofa with Callie the cat and Jonny :-)

I luckily had a fairly goods night's sleep and slept from 11pm-4:30am, not bad considering the steroids are meant to cause huge sleep disruption! Slightly puffy face the next day but nothing much to report in terms of symptoms from the drugs.

Day 2
Today we got a bit held up as the Doctors didn't come round to put the cannulas in until 9:30am. It was a bit of shame but they do have a whole neuroscience ward to attend to so certainly understandable. In the end the Phlebotomist took pity on us and although it hurt a bit more today (same position as Day 1) she managed a one attempt job, yay! 
Today however I did have a bit of a mare with the steroids. I had my old housemate Sid Rees with me as my entertainment buddy as Jonny went back to work today and while I was in the middle of playing good old 'dots and squares' with her I felt my breathing change. It was hard to breathe in without coughing and it made me panic a bit as although breathing out was easy and very normal, it was really hard to take enough air in. The nurses Chris and Pete were AMAZING and watched me like a hawk, even my Lemtrada buddy Pete#2 was concerned for me and was providing moral support which was lovely. We got my breathing under control by stopping the steroids for 10 minutes and standing me up to do some steady breathing. It thankfully passed quickly but the Doctor came down in the afternoon to examine me and has ordered an inhaler as a result in case it happens again tomorrow. Possibly a touch of pleurisy apparently or simply just a reaction to the very strong dose of steroids - 1000mg each day Monday-Wednesday! 
The rest of the day went without a hitch and felt a lot quicker than Day 1. I didn't get hyper until I got home which was a nice change but my legs are very heavy tonight. 
I should also mention that the meals at the hospital have been REALLY good, thanks to our lovely housekeeper Pete#3 (The JR likes to collect Petes) who comes round with our menu choices each day and encourages us to tick the entire list of puddings to help with the steroid munchies. I'm not tending to eat dinner at home at the moment as I've usually spent the entire day snacking, if I'm not the size of a house by the end of the week it will be a miracle. They actually ask us our weight each day to check we're on the right dose of drugs, and I'm strongly considering adding 1kg on per day, as that is approximately the amount of mixed nuts and chocolate I'm consuming in between each meal! 

As I sign off tonight the dreaded Lemtrada rash MAY be starting to make an appearance but I've had extra Piriton and will take some more before bed which should help, it will also knock me out - added bonus there! 

Thank you to all those sending messages of support, if I don't reply quickly it's because my brain is a muddle or I'm in the middle of chair aerobics sorry!

Much love,

Claire x