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
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