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!
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 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
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!
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!
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:
It’s been difficult for me to write this blog, hence why this one has taken a little longer to come compared to the others, which have more or less been churned out. The difficulty being, that my most recent appointment didn’t really go as I expected it to go, with a combination of both good and bad news. This has lead to a lot of questions and some huge decisions for me to make. It’s definitely easier to write these blog posts once the dust has settled a bit!
It’s been a blur of appointments since I first stepped into the Optician’s back in June. Following my last appointment where I was diagnosed, I’ve had a further two. Early March, I met with my MS Nurse, Danny. I like Danny. He definitely knows his stuff!
My first meeting with him wasn’t much more than an initial introduction and confirmation of what I already knew about the condition. He talked me through what I could expect from him, which included three monthly appointments. He also shed some light on my next appointment, in a further 10 days, with an MS Specialist. Last Friday I had that appointment with my specialist.
My appointment was at 9 am at Salford Royal. I was a bit miffed as it’s a bit of a trek (my other appointments had been in Wigan), but the way the dates fell, Dave was working a Saturday so was able to take Friday off to be with me, which was a huge relief. I was really struck at what a lovely, warm hospital Salford is. I get the impression that this is fairly recent, but compared to my experience of hospitals historically, this one felt far more fresh and modern.
I was called in for my appointment by an MS Nurse, Danielle, who sat me down and told me she needed to get me to do a couple of tests prior to meeting with the specialist. I was used to being prodded, poked, liquids taken from me and liquids added to me as well by this point so I wasn’t phased. But it wasn’t those types of test.
You know the show with Philip Schofield, The Cube? It was like that! I had to put all these pegs into holes and take them out again with one hand, and then do it with the other hand, all the while Danielle was sat with a stopwatch in her hand. Oh the pressure! She explained to me that she was just testing how long it took me so that a benchmark was set. That way they could test how long it took me next time, and check for degeneration. She also timed a 25 metre walk, again, to set a benchmark for next time I was in.
Following a ten minute session in The Cube, I was then sent to wait to be called in.
If there’s one thing that sticks in my mind about all the medical professionals I’ve encountered, it’s how kind, friendly and reassuring they are, and this specialist was no exception. I went into the consultation room, and took a seat. He asked me to give him a timeline of my symptoms and everything that had happened (I was getting very well rehearsed in this by now!) and reviewed my scans.
He looked through pictures of both my brain and spine, then asked me to sit up on the bed. He did all the reflex tests just like Dr. Tyne had. He tested my eye sight (then started laughing at me for making the letters up when I couldn’t see them!), and did the tuning fork thing as well. This one was particularly concerning, as he’d whack the thing that looked like a tuning fork, then touched it on my foot asking me to tell him when I couldn’t feel it anymore. Within roughly two seconds I could no longer feel it. This didn’t really bother me until he repeated it on my hands and lower arms and I could still feel it about 10 seconds later. Definitely something wrong with my lower limbs there…
Once all the tests were finished, he sat me down, made notes on what had just happened and then told me that I’ve clearly had this going on for a very long time. He said that my brain wasn’t causing him any concern, but there were so many lesions on my spine that it suggested that my MS was very active. One more relapse, could result in irreversible damage. Equally, that might not be the case. But I may not continue to be as lucky as I have been. He even said that he was surprised that in spite of all the lesions that I had, I was still as mobile as I am.
He then went on to tell me, that in terms of medication, he wanted to hit it hard and aggressively.
This came as a shock. Perhaps even the toughest blow I’ve had so far. I was almost expecting to go into that appointment and be told that it wasn’t bad enough to medicate (you only qualify if you’ve had two relapses in two years and I thought that I might have missed that slightly). Having read all sorts of horror stories on forums (bloody forums!) about them, I thought there was a chance I’d even make the conscious decision to not medicate. But not this.
He presented three options to me. Mavenclad, Tysabri and Lemtrada. All come with their own risks and varying levels of effectiveness. There are pros and cons to all. Mavenclad for example is only about 60% effective in terms of halting progression. Tysabri is about 80% effective but it involves a day in hospital for an infusion every 28 days. Lemtrada is the one that medical professionals seem keen for me to go on. It’s intense, but it’s also the one that although on paper it’s the same level of effectiveness as Tysabri, in practice it’s a touch more.
I was really overwhelmed with all the information. This is something I’ve struggled more and more with – if I can get the same information by reading it somewhere, please just stop talking to me, and give me the written stuff! I asked if there was any written material, leaflets or websites available. Anything with everything I needed to know in a written down format so that I could digest it at my own pace.
As it happened, Danny was at the hospital that day, and not out and about visiting patients. After he took some of my blood (they needed to prove that I’ve had chicken pox and apparently my word isn’t enough!) he grabbed a free room and talked all the options through with me. Dave and I probably could have made a decision there and then that Lemtrada was the option that I wanted to go with, but in spite of the urgency to make a decision, he still wanted me to take a week to reflect before confirming what I wanted to go with.
I’d planned to work from home that afternoon, but honestly, my brain was a mess! I didn’t have a flipping clue what I wanted to do. I was in shock from finding out my MS has caused more spinal damage than anticipated. I was scared, but equally reassured by the treatment options available to me.
My Dad is the absolute voice of reason so although through discussing it with Dave and Danny, my mind was pretty made up on Lemtrada, I needed his opinion. I sent him an email detailing the basics of each. He read through it but ultimately felt that we needed to go with medical opinion.
So Lemtrada it is. I’ll be confirming this choice to Danny on Monday.
Lemtrada works by killing off your white blood cells – your immune system. I’m being switched off and on again! The idea is that the new white blood cells don’t do what my current ones are doing (which is attacking my nerves). You have two rounds of it, 12 months apart. Probably within the next two months, I will be an in patient for five days at Salford whilst I receive my first round of infusion. I’ll get sent home with a sick note from work for about six weeks and all the antibiotics as I won’t be able to fight infection. Then I go back again in another year for round two, which only goes on for three days this time.
The only other snag is that I’ll have to go for monthly blood and urine samples at Wigan Infirmery for five years. This is just to keep on top of the more serious possible side effects such as thyroid problems, clotting issues and kidney failure. I can stomach a needle in me every month though to keep on top of that!
And in amongst all of this, the good news is that I still don’t need a lumbar puncture!