Category: lemtrada

1 year on.

10th June 2017. Somewhere between 9am and 10am on a dreary Saturday morning at Poppy’s play date, I thought I’d got some rain water stuck behind my contact lens.

I gave it a little wiggle. Nothing changed. Maybe I’d smeared some foundation on the lens in my haste to get ready. It wouldn’t be the first time.

That didn’t fix it either though.

A week later, 17th June, I was in hysterics, fearing the worst and desperately trying to get an appointment at Specsavers to see an optician. I still managed to squeeze in a selfie in between the tears of me modelling the “four eyes” look, as featured below!

That was what got me to here. On a Sunday evening exactly one year later, waiting to go into hospital in the morning.

This evening, I’m feeling nervous. I’m not scared but I’m well aware that I have chosen to have my immune system wiped out. I’m starting to feel the anticipation bubbling away inside of me.

Having reflected on the last year, what can I tell you?

I’m no longer scared of needles and blood tests, of which I know they’ll be many from tomorrow. I take CBD oil, which having grown up as VERY anti-drug was something I never thought I’d do. I blog. I put myself first. I don’t obsessively diet. I’m no where near as focussed on career progression. I try and live in the “now” more. I’ve got lots of new friends. I have MS.

Doesn’t a lot change in a year?

5 more sleeps.

Less than a week to go!

It’s gone so quickly. Hopefully this time next week Day 3 will be complete.

I think I’ve got everything on my “hospital packing” list now, so I’m ready! I had to make sure I had some respectable pyjamas – you honestly don’t realise how much of a slob you are until you need clothes to go into hospital 😂

I’ve been warned about this vile rash that you get as a reaction to the infusion on Day 3 or 4 so I’m loaded up on Eurax cream and Aloe Vera gel. 1 in 10 manage to avoid it, but I’m not counting on me being one of the lucky ones! I’ve had warnings of offensive tastes from the steroids too so I’ve stocked up on mint imperials. I also succumbed to ordering a Love Island water bottle too- hopefully it’ll arrive before I go in. If I’ve got to drink about 10 gallons of water a day, I might as well make it sassy!

This week when asked about how I feel, I’ve answered that I’m just looking forward to a really long break from work and a lot of sleeping. Dave’s fuming – he thinks it’s a huge waste that I’ve been signed off work for the duration of the World Cup as I’m really not a football lover. I can’t even find it in me to be slightly patriotic towards my country. Not a fan.

Yesterday I thought I was going in to see Danny, so I was armed with a tonne of questions. Turns out I was just getting some pre-Lemtrada blood tests. I dunno what they were for exactly but as usual, they took loads.

Having caught up with Danny today I’m feeling really reassured now. He said he’ll pop in to see me next week, so I know I’ll be getting at least one visitor.

As it turns out, they’re really flexible on visitors which is good. I’ve told Kat and Steph to come on Thursday so that they can laugh when the sexy rash appears!

I’ve got more of an idea of what Day One holds now. On Monday, I need to be at Salford Royal for 8 am. They’ll start off with some blood tests and a urine sample followed by sending me off to the cafe for an hour as they wait for the results to come back. Then providing they’re all ok, they’ll request the lab to mix the Lemtrada and then I’ll be hooked up to an hour of intravenous steroids before they move onto the Lemtrada. I’m bracing myself for a LONG day.

In the meantime, I’ve got a nice a weekend planned with a Poppy play date on Sunday and Dave and I are going to an Evening with Eddie Hall Saturday night.

The next time I blog, Day One will probably be done! Eeeekkk!

Me and my Girls! We went out for Pre Hospital cake on Sunday 😊
Said cake.

Re-brand!

Tomorrow, 30th May, is World MS Day and it felt right for me to honour it.

I’ve decided to do this by re-branding my blog. I’ve changed the website address to something that’s a bit more reflective of what I write about. I was keen on the play on words which reflects both the fact that MS is totally misunderstood but also nods to the fact that my blog is about me making my MS, understood.

I’ve also decided to try out a new theme, although I can’t say I’m convinced by this new one. But perhaps I’m just having a bit of an aversion to change!

Either way – I’m trying out a new look!

 

3 weeks to go…

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I’m extremely conscious that I’ve not written for about two weeks again. I sort of feel like there’s not a lot to say at the moment, despite the fact perhaps the biggest thing to ever happen to me is imminent!

The countdown is very much on for my trip into hospital. It’s three week today until I’m in hospital starting my first round of Lemtrada treatment. In preparation for this, I’ve taken a couple of days off work to “declutter”. Although not 100% sure where I want to spend my recovery time yet (Essex, with Mum and Dad is an option), when I am at home, I want to have as little “stuff” around me as possible.

Last Monday, something strange happened. I didn’t wake up with my first thought being “I’ve got MS.” Ok so that being my first thought is perhaps a slight exaggeration, but I’d be lying if I didn’t say that over the last 8 months since I got told that I might have it, I’ve been very conscious of it. There’s been an MS cloud. Not necessarily a big grey cloud, but a cloud has been hanging around. But now it’s gone.

It got me wondering why this might be the case. I have a theory that I’ve toyed with for a while now. Had I attended my appointment with the specialist back in March and been sent home with a prescription, that would have been it. Something would be being done about my condition and life would have to go on. I feel as though whilst waiting for all stuff to happen, I’m back in Limbo again (and we all know how much I just LOVE it there!) Now I have a date that yes I am waiting around for, but it feels more proactive. So I’m getting on with life as much as I can.

So cloud gone! Yay!

I couldn’t believe how quickly my date came through following confirmation that I was agreed as suitable for treatment. I spoke to Danny last week and he explained it. I was on an urgent list! It seems insane when I have no real disability in terms of my mobility. I think that’s the point though. Nobody wants me to get to that stage.

Now I’m in the throes of hospital bag planning. I’m so well prepared based on everything I’ve read in the fab Lemtrada group on Facebook. Apart from the obvious stuff, I need to be prepared with mints and cordial. Apparently you need to drink copious amounts of liquid (easier with dilute mixed in) and mints help the revolting taste that steroids leave.

I’m taking my laptop so I can continue my current binge watching of Grey’s Anatomy (no spoilers please – I’m only on Season 6), and I’ve got plenty of other things on the binge watch list! I’ve got books to take, journalling to do and of course I’ll be continuing blogging and writing to my fabulous pen pals.

Now all there is to wait for is the big day itself, which from what I hear, is a massive anti climax!

Watch this space. I’ll definitely be keeping you posted!

I’ve got a date!

Well – I’m blown away!

I mentioned just earlier this week that I have been approved for Lemtrada treatment, and today I received a phone call from one of the MS Nurse’s at Salford Royal with a start date for Lemtrada of 11th June. I am so happy at
how quickly I’ve been given a date to start.

So that’s it. The countdown is on!

For the first time in my life, I’m going to be an inpatient at hospital. I feel a real mixture of excitement and nerves at the moment. The adrenaline is definitiely pumping as I think about what this means. It’s moments like this that I
realise that even though I feel mostly ok, I’m not. The treatment I am having is really aggressive. There’s a reason for that.

I think I’ve talked about what Lemtrada is before, but here’s a quick recap:

  • Four weeks prior to treatment I start the Listeria Diet (basically can’t eat/drink unpasteurised products, uncooked meats, pre-prepared fruit and salads, Mr Whippy, soft eggs and
    cheese)
  • Inpatient in hospital. The treatment is five, four hour infusions. One a day. The treatment basically wipes out my white blood cells as they are what’s causing the demyelination / attacking
    my nerves. Think of it like a system reboot of a computer!
  • Following last infusion, sent home with all the antibiotics and a sick note
  • Four weeks later, start monthly blood and urine tests to monitor possible delayed side effects
  • Six weeks later, finish Listeria Diet
  • 12 months later – go in for Round 2!
  • Five years later – finish monthly bloods

That’s a real whistle stop tour of the treatment, but it gives you the general idea.

This is exciting. It’s huge. This treatment could halt my MS, or at the very least slow it right down. There’s even evidence to suggest that it could reverse some symptoms (although this isn’t common).

I’m excited. This is going to be a long five and a half weeks!

Little Update!

I’ve not blogged for about ten days, which for me is quite a while! I’ve felt like there’s not been much to say over the last couple of weeks.

So what’s been happening?

Last Sunday, my lovely friend Karen ran the London Marathon for MS-UK. As she had a charity spot, she had a £2000 target to hit, which I’m pleased to say she did. She didn’t have the race she’d been planning because of the heat. But she did it! What an absolute champion!

Lou dragged me to Body Pump on Monday, then I spent the subsequent five days not being able to walk. I found this particularly amusing as I’d shared my story on our work intranet in aid of MS Awareness Week. All I could think was that people will have read my story, then seen me walking really strangely. Then put two and two together and ended up with five 😂. It certainly gave me a little chuckle!

The last couple of days, Dave and I have been glamping! When I found out about going for Lemtrada this year, I knew we’d have to get a break in sooner rather than later. We had thought about trying to get over to Athens for a couple of nights, but it’s just not going to he possible. So instead we’ve found ourselves in a “Pod” on a campsite between Blackpool and Preston.

Although the weather was abysmal, it’s been so lovely to just recharge. I actually prefer the bad weather to it having been roasting. Plus, as the weather was bad, it was nice to not feel compelled to do something just because it was nice. I think I needed to just more or less stop!

I’ve had increasingly itchy feet again – you know what I get like when I’ve not heard from my specialists for a bit. Today I came home to some fab news though.

I’VE BEEN APPROVED FOR LEMTRADA!

This is such a relief. I know I got told that the evaluation panel thing is “just a tickbox exercise” but it was still worrying me a bit. So now it’s just a case of waiting (oh there’s a change!) for a date.

On the plus side I’m still avoiding a lumbar puncture, YAY!

Finally, I’ve started reading a book called “The Unmapped Mind.” It’s written by a guy who has relapsing remitting MS, and has also had Lemtrada. It’s a combination of his memoirs along with everything he learned along the way. I’ll be giving a full review once I’ve finished!

Today, is a good day!

Following my last appointment, where my Specialist and Danny told me all about my treatment options I’ve had a lot of thinking to do. My decision hasn’t changed from what I had decided in my last post.

Today, I confirmed to Danny that the route I want to go down, is Lemtrada.

In the time since my last appointment, I’ve been in touch with Ana, a patient of Danny’s who has responded well to treatment. Ruth, a new friend who also has MS, added me to a group on Facebook for people who are thinking about Lemtrada as a treatment option, or already going through it. I was a bit wary of this at first as we all know my prior experience of forums kind of sucks. I’ve found it a very real, balanced environment though. It’s not full of whingers. It’s really supportive and feels far less “toxic” than some of the other forums that I had previously come across. If anything it’s helped me confirm my decision.

So that’s it.

Next steps are my case going to an evaluation panel where my Specialist applies for funding. From what I gather, this is more of a tick box and with the story that my spine is telling with so many lesions, it’s without question that he’ll be successful. After that I’ll hear from my Specialist, with a date.

Then it’s just sitting tight and waiting (yeah, waiting again!) for a date to go into hospital. The challenge is waiting for a bed, but Danny thinks that I should be in by June.

I need to start thinking of all the questions to ask him, because here’s how good my questions were today:

– Can I travel to Essex if I decide to spend some of my recovery down there?

– Are you going to put me in a cotton wool house?

– Can I still hang out with Poppy (the dog)?

– Can I still drink gin?

No. I don’t need to be wrapped up in cotton wool, and I can live a reasonably normal life in the period after treatment within reason (i.e. keep away from “germy” folk). I can have gin, hang out with Poppy and go to Essex if I decide to do that.

Today, I actually feel elated. I feel like I’m getting somewhere. And as I said to Louise the other day:

“Bring it the f*ck on!”