Day 4 & 5 of Lemtrada and accidentally getting high!

Before I began writing this blog I read quite a few other Lemtrada blogs to see what to expect on the journey and I noticed that several wrote little to nothing on day 4. Having now gone through it myself, I can totally understand why. 

During the first 3 days of treatment you receive an IV dose of 1000mg of Steroids (methypredisolone) to lower your chances of getting a serious infusion reaction (https://www.lemtrada.com/what-to-expect/during-treatment) before they give you the usual cocktail of Piriton, Lemtrada and Saline flushes. On day 4 and 5 however, you don't receive any steroids, which is probably why no one is well enough to write a blog on those days because we're all asleep! Steroids definitely made me hyper for the first few days but they do also have the downside of preventing you from sleeping through the night which many of my Lem buddies experienced during treatment week.

From what I can remember of Day 4, it mostly went without a hitch. I'd had a fairly good night's sleep despite the evening of Day 3 being rather uncomfortable, (the rash was fairly prolific at this point and I had to be plastered from head to toe in Eurax cream to combat the itching.) 

I arrived at the JR bright and early on Day 4 to be greeted by the lovely Sue (partner of my Lemtrada buddy Pete) who told me that Jane the Phlebotomist was on her way, cue instant calm and relief! Sue knew my daily panic was usually when and how I was being stabbed so to be told this straight away was just fab. Pete told me he'd had a bad flare up of the rash the night before and was still pretty intense that morning. I started to say "oh mine's all gone!" and then spotted the familiar little buggers appearing on my arms, bah. Spoke too soon! Sue and I both agreed it was just as well that Eurax sold a super-size tube as well as the normal size as we were both going through it at quite a pace. I have a habit of slapping it on like sun-tan lotion until I'm caked in it, not entirely sure it makes much of a difference but it certainly made me feel better.

So due to our Dalmatian impressions we needed the cannulas in ASAP to get the fast acting IV piriton into our systems. I seem to have suppressed the memory of the cannula experience of Day 4, but I'm fairly sure it went into the left arm for the 3rd time without much of a problem, courtesy of Jane who we repaid with cake for her services to stabbing us. After Pete and I were all needle-d up it was straight onto the IV Piriton to keep the rash at bay, a few flushes and then onto the Lemtrada. 

The most noteworthy thing for Day 4 was probably the fact that we had a change of scene due to our room being needed by the group of people known as the "Tysabri Team". This is another infusion treatment for MS and one that I was actually offered at the same time as Lemtrada. Tysabri is administered once a month as a 2 hour infusion at the JR with I think 2 hours of monitoring afterwards (don't quote me on that one, see the MS Society website for more info). Interestingly one of our MS nurses mentioned that he thought Tysabri was considered to be the most effective MS drug, both Sue and I thought that it was Lemtrada at the top but there we go. Tysabri is a great drug nonetheless but seems to have far more of an impact on your working life than Lemtrada in my opinion, I certainly wouldn't want to be trotting up to the hospital once a month for the rest of my life! Very happy to have had the choice between the two though.

So the rest of Day 4 was pretty mundane, I slept on and off for quite a lot of the day and so did Pete. My Parents came to visit for the afternoon which was nice for them to meet everyone. And although the journey home was seriously lengthy (leaving at 4:30pm and travelling down the A40, it was bound to be terrible!) my lovely friend Glyn let me tip my seat back and snooze, which was just the ticket. I felt incredibly heavy limbed when we got home and got a bit teary about having to go through another long day of treatment the following day. 

Day 5

I woke up feeling much the same as the night before and could barely lift my head from the pillow. Even getting myself to sit up to drink water felt like a marathon, cue more tears as I told Jonny that I couldn't do it, there was nothing left in me to give. However I somehow found enough energy to put myself in my hospital clothes (joggers, t-shirt and super loose cardi), scraped my hair back and dragged myself down to the sofa to glug down all my various tablets. 

Speaking of which, I would highly recommend either investing in a granny-style weekly tablet dispenser with labelled compartments for each day or writing a really clear list. By the time you have to take Omprezole daily, Anti-virals twice a day, anti-biotics twice a day on Mon/Wed/Fri and enough supplements to single-handedly keep Holland and Barratt afloat - it gets hard to keep track of what to knock back when!! 

So Glyn arrived to take me to hospital for the "last time" (I wasn't counting on this being the last just in case something went wrong) and I was lucky enough to be able to sleep on the way to the hospital which was lovely. Glyn is such a lovely person and a fantastic driver (with a great car - Toyota Auris Tourer Hybrid, you know how I love a Toyota!) so I really have appreciated the lifts and the chats this week. 

For Day 5 we were back in our usual space, room 23. Pete bless him was plastered all over with the rash again, mine was much less angry so I really did feel for him, he was coping well with it though - super strong fella! 

Sadly Jane the Phlebotomist was not on duty so we had a nice Doctor instead who managed to put the cannula in my pesky right arm super quick with little pain. Hooray! It flushed fine, (which indicates it is working) so all was well, right? NO of course not! Because my right arm is basically utterly useless and the veins are vindictive little wotsits. Chris attempted to put some Piriton through the cannula and I knew instantly from the sharp pain that it wasn't going in so out came the Cannula and back came the Doctor. Thankfully because I'd been fidgeting and fussing around for a while, I'd managed to plump up the veins in my hand and that is where Cannula #8 of the week ended up. Which freaked me out something chronic but actually it was way more convenient than having it in the crease of my arm. 

So business continued as usual until I suddenly felt a bit sick. Well a lot sick actually, Sue kindly ran off to find me a cardboard bowl and I must've looked quite green because Pete the nurse decided I needed an anti-sickness drug and went off to fetch some stuff called Cyclizine. He warned me that it can hurt as it's pumped in, and it didn't particularly hurt, but did feel quite spiky which was a little unpleasant. My sickness feeling disappeared almost instantly, and then so did my sanity...

What ensued I'm not sure I can even put into words as I genuinely can't remember half of it, but it was like an out of body experience. I don't remember what order things happened in, but I basically went loopy for about 20 minutes. And yes to those of you thinking, "well she's loopy anyway" - EVEN MORE LOOPY THAN NORMAL! My first symptom I think was an overwhelming headache that made me cry out in pain and panic, it came in waves and seemed to be this enormously tight band that moved positions constantly. I couldn't decide it I wanted to sit up, lie down or put my head on one side. Then I felt like my eyes were too big for my head and were open really wide and I definitely remember asking Pete if they were. I saw myself running around the room and crawling along the walls, that was entertaining! I was laughing hysterically, I think at myself? I wanted to burst out in song when I came out of the loo (specifically the gay anthem "I am what I am" and "Shiny" from Moana) and I suspect I possibly sang something at some point. I think I also got very excited about the Ibruprofen Pete offered me (to calm me down perhaps?) because they were bright pink. I also repeatedly asked if I was high and said I felt amazing - despite this, I will NOT be requesting Cyclizine EVER AGAIN! How on earth anyone managed to keep a straight face I don't know - Sorry Sue and Pete! 

I'm just glad I didn't try to escape or generally cause chaos, because I certainly wasn't in control! Very odd thing to experience that's for sure. It seems to be quite a rare side effect but not uncommon.

So after that fun little episode I unsurprisingly felt totally wiped and promptly enjoyed a very good snooze, (after copious amounts of chocolate which practically had to be fed to me by Sue as I was feeling pretty shaky, what a diva I am!) in fact I was so tired in the afternoon that when lunch arrived I was distinctly uninterested and had to give up eating it halfway through. I was enjoying my bread roll one minute and then practically face down in my pasta carbonara the next. Sleep was most definitely the first priority on day 5! 

With my drug induced high adding an hour onto the day's proceedings it was no surprise that Pete finished first for the day by about an hour. Saying goodbye to him and Sue was actually really hard and ridiculously emotional. Having spent 5 very long, very intense days together I felt like they were family by the end of the week and I'm pleased to say that we're still in touch now, having a support network is SO crucial to fighting MS and I really hope we get to go through Round 2 together again. We'll also hopefully be with another MS warrior called Izzy next year, whom I was due to share my treatment week with too but didn't in the end as she had hers brought forward. I think the three of us together would be quite entertaining so here's hoping we can get the timing to work. 

I finished my treatment just in time for my friend Sid to arrive to pick me up and I must admit I didn't really feel anything as the last cannula was removed. (Well pain obviously but not elation surprisingly). If anything I felt slightly sad not to be coming back in for more treatment the week after, how bizarre is that?I think in reality it all comes down to the people, I feel the same about my nurses Pete and Chris as I did about Sue and Pete. The best news I had all week was that Chris is now my designated MS nurse rather than Ana the clinical research MS nurse as Ana is undertaking her clinics in Banbury more often than in Oxford. I love the idea of seeing someone twice a year who has seen me at my lowest, held my hand whilst I sobbed, massaged my back when I couldn't breathe and made me cake on my birthday - I will most definitely look forward to my appointments with her, she is a very special lady indeed. 

It's 2 days post treatment now and I have honestly spent nearly the whole weekend asleep. I'll do a "post-lemtrada" blog post next as the weekend has been fairly rife with symptoms and the recovery period is certainly in full swing.

For now, it's over and out, thank you again for all the messages of love and support. I really appreciate them and feel so very loved.

C x

What did I get for my 30th Birthday? Lemtrada Day 3!

What. A. Day.

Last week I had a sudden urge to google "things you should've completed before you hit 30" and I was surprised to find that it was a fairly tedious list and that I'd actually completed a fair amount of it anyway. I'd like to think that based on suggestions from friends this is because actually 30-40 is the decade for big exciting things and dramatic new experiences. That's probably having kids isn't it? Oh crumbs...

...So with the theme of trying dramatic new experiences in my mind, I started my day by having a battle with a Cannula because the last two days had gone far too swimmingly and it was about time we had some drama. 

Those of a nervous disposition please skip down to the starred section because I will go into details here. I'm sorry to do so but actually this blog is first and foremost about the MS journey and this bit is an important part of Day 3.

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The registrar came round to our room on the ward nice and early this morning, about 9ish I think which was fab, the quicker we start, the quicker we finish. I'm not sure what it is about the Doctors at the JR on our ward, perhaps they have to pass some kind of extra exam before they let them join but they are all lovely, cheery and super glam. 

Registrar lady attempted to put the cannula in my right arm as I'd had it in the left for the last two days and the veins seemed reasonable. She was incredibly gentle so I didn't really feel much at all, great I thought! Nope. I was feeling nothing because the veins were most definitely winning at hide and seek. So back to the left arm which admittedly wasn't looking particularly rosy by day 3, more of a cabbage-y purple and green palette. 

I was pretty tense by now and not coping as well as the previous two days. Luckily I had Sue and Pete by my side and Chris the nurse too for moral support. How Sue has any skin left on her fingers I'm not sure after my manic hand squeezing and finger rubbing! Jonny returned from his trip into the main hospital to search for a nail file and better colouring pencils (Yes I'm a diva, but flaky MS nails are a real pain and I was determined not to do my fantastic colouring by numbers book a disservice), just in time for cannula attempt #2. 

Cannula attempt #2 was not fun. We tried the Left arm again and my veins resisted the needle and every attempt was uncomfortable, not awful but very different to the previous days. I mentally wrote it off as just bruising pain and held on. Chris my nurse flushed some saline through which was again uncomfortable but definitely went in. So away with the steroids we went, hooray! My arm hurt but not terribly, Chris asked me multiple times if it was unbearable and I told her I just wanted to get on with it, I could cope and I was going to plough on through. I think I lasted possibly 10 minutes if that before that idea went totally out of the window. 

The pressure in my arm reduced me to tears and I felt hideously panicky and then faint too. The pain was about 8/10 and just not something I could endure, thankfully the cannula also started leaking so it was clear that the steroids weren't going into the vein anyway. Chris was amazing, very matter of fact and said "nope we're not having this, let's get it out", the moment the cannula came out the pressure began to ease. I felt some relief but very little as I knew we'd need to make another attempt. 

I've been lucky enough to meet some really great people online and I speak to a few other Lemtrada patients who started treatment on the 19th on a daily basis. Sioned our lovely welshy Lemtrada warrior had had similar Cannula disasters on day one and had several hours of this before they managed to plug her in properly. I very much had this in the back of my mind (was it 6 attempts Sioned?) but I also knew that she'd battled through and succeeded so I pushed that to the front of my mind and clung onto the hope of being stabbed successfully - oh the things you wish for on your birthday!

Cannula attempt #3. 

Pete and Chris the MS nurses offered me a break before the next Cannula attempt which I definitely would have taken, however they had a cunning trick up their sleeve. I heard the whispers of there being a option to be stabbed by the one and only Jane the Phlebotomist. Jane is marvellous, gentle and carries a vampire themed tourniquet around with her on her stabbing duties - what is not to like? The moment I caught wind of the possibility of having Jane, I perked right up and told Chris and Pete that I didn't need a break and I'd prefer to have Jane. I think this MAY have caused a little upset as really the registrar could have been used again but I was pinning all my hopes on Jane and her vampires. 

In the 15 minutes it took to wait for Jane I sent out as many texts as I could asking for emergency prayer. It's all about safety in numbers when you're going through a battle and I felt I needed all the help I could get. 

Jane appeared (I nearly cried with relief!) and took a look at the right arm again. The veins were indeed behaving like absolute buggers. Jane wasn't flummoxed by this and sat gently tapping the veins, massaging my arm and wedging my knee against the chair and her knee to stop me jiggling. She had the cannula in the fleshy part of my arm ready (not painful, AT ALL) and told me she was just waiting for the vein to come out to play. It felt like hours but was probably just a minute or two before she shook her head and said "it's not wanting to join us". I sent up the quickest, most ferocious little prayer thought of "OH COME ON PLEASE GOD!" and she instantly said "It's in!". 

I have honestly never felt such relief in my life. Jane is seriously jolly lucky I didn't kiss her. It didn't hurt and I happily sat and watched the little plastic compartment fill with blood while she completed the task. Considering I hate watching anyone take blood, in real life or on the TV - for me this is massive. I was that happy about having the Cannula in me I wanted to examine it in all it's glory. 

After I was plugged back into the Steroids again I got through them in just over an hour, had a quick flush of the Cannula and then I was free to go for a little wander downstairs for 20 minutes with Jonny before my daily dose of IV piriton. 

As I got up I felt like absolute rubbish. Faint, panicky, fed up and most definitely in need of fresh air. We got outside and I just sobbed in Jonny's arms, probably the shock and relief more than anything else! I rang Mum for a pep talk as she's the queen of Cannulas and well, anything painful really (after all this is the woman who accidentally had fluid removed from her lungs with a massive 6 inch needle without any anesthetic by a slightly frazzled but enthusiastic nurse last year!) I have no idea what Mum actually said to me and Jonny, sorry Mum, but it did the trick as I was ready to head back up to level 2 ready for the next step of the day. Hooray for parents!

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No more squeamish bits from here on in I promise!

Thankfully after all that drama, the rest of the day was fine. What I failed to mention was that when I reached the room first thing I was greeted by such a lovely sight. Sue and Pete had bought me a pot of Freesias (my fave!) a card and a chocolate Lindt rabbit, the latter of which got me through the Cannula chaos. Chris the MS nurse had also baked not one but two yummy cakes for us all to nibble on! What a legend! Very lucky to be surrounded by such caring people, I am SO glad to have been made a day patient and not an in-patient like some of my other Lemtrada buddies, as the team is what makes this all the better. I was also grateful for the company of my In-laws for a little bit today, who then left early to clean the house along with Jonny after I had a steroid-rage strop last night about the most random things like door handles, clean bedclothes, toothbrush heads and bacteria risks. Thank goodness he's laid-back and knows when it's not worth taking on a MS monster in full 'roid-rage! I am one lucky lady.

By the end of Day 3 I have totally lost my taste buds so lunch and dinner were erm, fun. Semolina pudding was not even worth attempting, can you imagine? BLEURGH! Pete tells me the Lasagne was pretty good though. 

Pete and I also managed to finish the day with a touch of the Lemtrada rash, (literally just before it was time to take the Cannulas out for Pete, one minute later and it would've been a whole to harder to get IV piriton down him!) Just a few spots thankfully so nothing too bad, but you do have to watch your skin like a hawk as it's a very stealthy transition from normal to Dalmatian. Mine has spread a little further tonight so I'll be taking oral Piriton in the next half an hour to hopefully prevent it from going wild overnight. It's not itchy yet thankfully, just a little disconcerting as I've seen the pictures on the Lemtrada forum and I know how bad it can get. Hope yours has stayed fairly calm too Pete and any other Lem buddies!

Thank you all again for the messages of support, (Thanks Homegroup for the MASSES of flowers!) and Birthday messages. I must admit it's rather entertaining to read a few of them and I can't tell if they are tongue in cheek or just oblivious. "Hope you're having a wild time and the best day of the year so far Claire!" Erm... Well it's been dramatic and perhaps a sort of wild day and I suppose I can genuinely say I've spent the entire day drugged up to my eyeballs, legally. 

I've also spent at least £9000 of Jeremy Hunt's money. Win?

C x

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

5 days to go!

Hello!

It's the final countdown til my MS treatment begins on Monday 19th Feb. I've chosen a drug called Lemtrada and I will be treated as a day patient at the John Radcliffe in Oxford. 

I met my lovely new Neurologist Dr Gabe DeLuca back in December last year and we went through my entire medical history and discussed treatment options where he offered me three possible drugs: Tysabri, Lemtrada and Cladribine.

I also endured another hilarious physical examination, this time led by his two medical students where I discovered that I cannot tightrope walk backwards (Surely this isn't that unusual?) and they picked up that when I walk I don't swing my right arm. It was fascinating, entertaining and at least this time no one told me I had a wonky face! I particularly enjoyed egging the students on to whack me harder when testing my reflexes, they were a bit too gentle to get my limbs moving bless them.

The drugs discussion in the appointment did come as a bit of a shock though, (WARNING - This bit may bore you!) to explain first, the drugs available for my type of MS (Relapsing Remitting) fall into three categories which correspond with how active your MS is. The categories are: 

• CIS (Clinically Isolated Syndrome) where you experience one episode but may not go on to develop MS 
• Active RRMS (Relapsing Remitting Multiple Sclerosis) two relapses in the previous two years
• Very Active RRMS - highly active despite treatment OR rapidly evolving severe where you have two or more disabling relapses in the previous year and show new areas on damage on two consecutive MRI scans.

The drugs themselves are then categorised as Moderately effective - reduces relapses by 30%, More effective - reduces relapses by 50% and Highly effective - reduces relapses by two thirds 70%

I was very much anticipating that I would be firmly in the Active RRMS category as although one of my relapses (or episodes in my language) WAS disabling for a short period, it hadn't left any lasting damage. I had pretty much planned to ask to be given Tecifdera which is a tablet, because I liked that it wouldn't interfere with work and the side effects weren't too bad.

However, Dr DeLuca dropped a bombshell and showed me my MRI scan pictures. The lesion on my brain is pretty sizeable and active, and there were too many little active lesions on my spine for me to count from the picture. He also felt that I have actually had 4 relapses in 18 months - hence the classification as Very Active RRMS. Gulp.

Although I have minimal symptoms right now, (not even fatigue this week hooray!) he explained that my body could spring another relapse on me at any point, and the next episode could cause lasting damage. So I was offered two highly effective drugs and one brand new drug called Cladribine which was only released in the UK this January. 

I was worried at first because I wanted to keep the strongest drugs in reserve. Kind of a "if this doesn't work, then we've got something else left to try". So to have the strongest possible drugs recommended right now was a massive shock. I do understand though that it's important to hit MS on the head early, to stop it creating any more damage.

After a LOT of googling and talking to people online I picked Lemtrada, the reasons for which I will explain in the next post. What also swung the decision was that my amazing 2nd Cousin Rachel has just had Lemtrada and she was able to talk me through the pros and cons of each treatment. Yay for fab family members!

So my treatment next Monday will entail 5 days of IV infusions, roughly 6 hours a day, which is repeated again a year later (only for 3 days) and monthly blood tests to monitor my levels for the next 5 years. 

The picture above is taken from my very swanky Lemtrada handbook which came in it's own purple leather wallet - no expense spared here! I love the picture though, it makes it much easier to understand what this drug actually does. Basically it completely resets my system and gets rid of all the hyperactive white blood cells that are nibbling away on my much needed Myelin. 

As I will have ZERO white blood cells for a while I've taken some time off work (both school and repairing) and I will have to stay away from anyone who is even the tiniest bit ill. I've also just paid to have the house "deep cleaned" by an awesome local cleaning company who specialise in Military march-out cleans. Thank you Sam! Pressed for Time Cleaning Company

Must head back to the prep now, I'm currently in the process of planning 4 weeks of music lessons, filling the freezer and getting things ready for next week. So much for half term!

Much love,

Claire x

My MS Journey so far..

Hello hello. 

The purpose of this blog is purely for me to keep a record of my MS journey, I would love to think that other might find it interesting but equally if it's just me using this page as a diary then I'm quite happy with that too. I am about to commence on one heck of a treatment journey that will last 5 years so I thought it was probably a good idea to reflect on what goes on when etc. This is also inspired by another blog I've been reading by a fellow MS warrior woman who has had the same treatment that I will soon be starting. Read her blog here - Tracy's Lemtrada Journey

So most of the ramblings on this blog will be about MS, and if you've ever met anyone in the MS community you will know that we LOVE to support each other and we're all desperate to hear stories about treatment/symptoms/progression etc. Why? Because this disease is terrifying and any tiny piece of information that gives us comfort that what we're feeling is actually "normal" is massively important.

A little background on me - My name is Claire, I am rapidly approaching 30, married to my lovely husband Jonny and we live in Oxfordshire with our cat Callie. I currently work 0.6fte as a secondary school music teacher and I repair woodwind instruments part-time for the local music service and various local musicians. I also regularly play clarinet/flute/sax for several musical theatre companies and a few amateur orchestras. Finally I also have several private woodwind pupils because I'm a workaholic and I don't know when to stop! In my small amounts of spare time (that I should spend resting but rarely do) I love to cook (not bake, that's a disaster) grow fruit and veg, make homemade presents/decorations and drink lots of wine. Basically I want to be Barbara from The Good Life - hence the title of this blog! MS and the word good are potentially a bit of an oxymoron and I'm sure during the journey I will certainly not feel that this is a "good life" at times but I do have a very positive outlook and I fully intend to make the most of my situation and to continue to have a "good life".  

So that's me - now for the important bit. My MS journey started in November 2016 when I lost all feeling on the left side of my face. It started in my lips and I figured it was just because I was teaching in a FREEZING cold classroom (our school often sits in the "heating is for wimps" mindset). I already have something called Raynauds phenomenon where you lose blood flow to your extremities and they turn white, so I figured it was just something like that.

Funky huh? I love freaking people out with this, "dead fingers" look. It does however, get quite annoying when they start to go numb. And then blue.

Anyway, so I thought very little of the numb lips until it turned into a numb face. I mentioned it in passing to our the office staff at school who are very good at looking after me and pretty much made me ring the doctors there and then. So off I trotted to see the emergency doctor who checked me out, decided it wasn't a stroke or Bell's Palsy and referred me to a neurologist.

The Neurologist appointment wasn't until March (classic waiting times on the NHS!) and I saw a fantastic Neurologist who put me through my paces in a physical examination that felt more like an aerobics session! Lots of "lift this arm up, touch your toes, walk backwards, walk forwards, smile, frown, stop laughing!" It was mad. The facial numbness had only lasted a week so she was rather cross that she hadn't seen me when the actual episode was occurring but NHS waiting lists sadly are what they are.
After the examination she declared almost instantly that I had a wonky face but I had mostly normal responses. I felt a little bit surprised but according to my dear friends and family who are so encouraging all the time and not at all insulting, (ha!) I've apparently been lopsided all my life! Cheers folks. I must admit I spent a good week trying to smile normally and evenly but I looked even more odd than before so I've embraced my lopsidedness and carried on! 
Now the next part is where I stupidly delayed my own treatment as I got very confused between what an MRI is and what a CT scan is. The neurologist asked me at the appointment if I would be willing to have an MRI scan, I said "is that the Polo" and she of course said yes. Because to any Doctor, yes an MRI does look like a Polo I suppose. What I should've said was, "is it the super noisy hideous tunnel version of a polo that will send my claustrophic self into a meltdown rather than the nice machine where you can see out the other side?"

So after agreeing to have one of these hideous scans, I realised my mistake via a quick chat with google and luckily got it rescheduled for an open MRI scanner. Lovely, or so I thought...

So normality resumed for several months while I waited for the scan. Then in early July I suddenly lost all feeling in my right shoulder which rapidly extended down to my arm, hand and fingers. I went to A&E straight away this time and had a CT scan (rather pleasant, not scary at all - because it's a polo!) and my first ever canula. The canula was hilarious in itself, I'm not a huge fan of needles and I honestly thought the nurse was just taking a blood test until she slapped a massive plaster on my arm and menacingly announced "that will do, FOR NOW!" I was packed off to the waiting room with Jonny who practically had to hold me down whilst I freaked out about being able to see a tiny plastic capsule of my own blood attached to my arm. Luckily the waiting room was mostly empty but Jonny was in hysterics as my wails of "This is not what I signed up for!" carried on. 

The numb arm/shoulder/hand lasted 4 weeks in the end and sadly I still have numbness in my hand today (Feb 2018). Luckily it hasn't stopped me playing but it has taken me a while to get used to it, especially as I can't particularly feel pain or temperature in that hand any more. 

So fast forward now to August 2017 where after a lovely weekend in the New Forest we arrived home and upon getting out of the car I realised I couldn't feel my knee. I knew it wasn't just numbness from travelling as I tour Europe twice a year both with school and with an orchestra I work for and 24hr coach journeys are the norm for me - 2 hours in a car was nothing. I got Jonny to do a touch test down each leg and realised that I had numbness from the knee to the toes on my left side. By the next morning it had extended to my left armpit.
As a result of episode 3, I had to wave goodbye to any hopes of waiting for an open MRI scan (the waiting list is huge) and had to bite the bullet and have a brain MRI one Sunday and a whole spine MRI the weekend after - God Bless the NHS for working weekends! The MRI scanner was terrifying. I had no sedation as I got confused and thought it was IV but apparently I was meant to request tablets from the doctor, oops. The radiologists  however, were lovely and to help with the claustrophobia they let me have Jonny in the room with me as long as he wore ear defenders and didn't get in the way of the scanner. Jonny stroked my hair for the brain scan from one end of the machine and held my hand for the spine one. I listened to him rambling on about carpentry in between the "music" of the machine (very minimalist!) and I prayed my absolute socks off, and survived!

A week later I had THE call from my neurologist who told me very gently that they needed to see me within a week. I asked if they'd found anything and she was kind enough to let me know that it was what they had suspected, I had inflammation show up on both scans. As I am an avid fan of doctor google, which I know isn't great but I like to have a bit of an idea, I sort of knew what that meant. 

So in we went to the JR where I met my neurologist and my new MS nurse. When she said the words "It's MS", I must admit I didn't really feel anything. I think perhaps because I knew it was likely to be that. I asked to see the scans and she refused which was a shame but at the time it was probably for the best. I was sent away with a flyer for the MS team and told to take some time to get my head around it and do some research before I told family, work etc.
For once I actually did and I can totally recommend being educated on MS before you utter anything to anyone. I read every website, every leaflet and wacthed every video I could get my hands on. And it paid off! I had several friends get confused with MND and MS and also ME, so I was able to gently explain the differences to them. I also was able to have a fantastic meeting with my headmaster early on where I gave him the MS information for employers document and we had a really honest and open discussion about the future. I asked for a few reasonable adjustments such as a high backed stool for when I was conducting and to have an occupational health appointment at the earliest instance as I wanted to protect myself for the future. In my mind, it was good to see occ. health early while I was mostly well to have that down on my record. The link to the document I gave my Headmaster is below - well worth a read. 
MS information for employers

So that is MOSTLY my MS diagnosis in a nutshell. I have left out lots of details about the symptoms I had in between my episodes (I call them this because they were pre-diagnosis so in my mind they don't count as a relapse, although medically they do). But this is already an incredibly long first blog post and I shall save the rest for another day! 

Last thing to say today is that I have already been prescribed a treatment for my MS called Lemtrada which will start on the 19th February. More on that and how I chose the treatment later.

Love and hugs,

C x