Friday 20 January 2017

Five years on...

It's been a while since I posted anything but as I have reached the five year anniversary of the first treatment of Alemtuzumab I thought I'd let you know how I am getting on.
And in one word - GREAT!
Really great actually.
In the five years since the treatment, I can confidently say that I have had zero relapses. Zilch, nada, none.
Don't get me wrong, I do get occasional bouts of extreme fatigue where I have to take time off work, hole up on the sofa and just sleep (in fact I'm currently having one this week) but it happens maybe two or three times a year. And I can cope with that - and thankfully have a very understanding employer.
But in terms of the other stuff, you know, the blurred vision, the muscle spasms, the tingles, the hand clawing, the fingers that refuse to work, the limbs that feel unstable in their sockets, the sight loss, the vertigo, the failure of your body to obey instruction to move, the confidence loss, the feeling of uncertainty and hopelessness and all those things... well I've been free of them for five years.

When I first decided to go ahead with the treatment, I said to myself: "Well if it gives me five years MS free, it'll be worth it."
And it has been.
I have been given the gift of delay.
Not to delay my life you understand. No, I've been given the gift to the delay the disease. And I am so thankful.
In that time, I have lived by the mantra that one day I might not be able to do something, so while I can, I will.
So I have run a couple of long distance events, lifted weights until I felt myself about to break wind and stopped hurriedly, worked out so my heart feels like it is bursting out of my chest and my face turned a magnificent shade of crimson, danced (only on on the odd occasion mind) until the early hours fuelled by copious amounts of alcohol, I re-sat my maths GCSE for the fourth time finally achieving a B grade, and have generally done as much as I can - because I can.

My family has grown - I now have two little boys who delight and frustrate my husband and I in equal measure with their hilarious attempts of understanding this mad world we live in.
And I am still working full time in a pretty stressful environment which (most of the time) I am happy with.
So my life is busy, sometimes hard work, often with me shouting having stepped yet again into the puddle of pee that accumulates at the bottom of the toilet thanks to little boys not paying attention. But it's a good life. And I'm happy. Especially as I have been able to have this time minus any intrusion from MS.

That said, I have of course been having monthly blood tests to monitor for any side effects from Alemtuzumab and the annual MRI head scan.
But I've reached the magic five year point so no longer have to have those monthly blood tests. Amazing!
I actually paid very little attention to the whole blood test thing.
When I first started, I was handed a blue folder by one of the MS nurses in which to record the results and was also ordered to ensure I rang up to get the results. I did it. Once.
The documents inside the blue folder remain blank. I was not interested. If there was something up, they'd let me know I figured. When I look at my lack of interest and participation in filling in the results sheet I think it's probably just an act of rebellion or maybe an act of control. It was bad enough I had MS and had to have monthly blood tests, I'd be damned if I was filling in a results sheet as well! Stupid and childish I know. But because I felt so well, to have to be reminded monthly that I had MS annoyed me. And having to speak to someone about it annoyed me even more.
So I didn't speak to anyone about the results. Because I didn't want to and actually because I didn't care. Obviously I would have cared if something had been wrong - but I just knew there was nothing wrong. I felt (and still feel) so well.

And the annual MRI head scan. Well now that's been an experience. Not for the results which have consistently showed no new MS activity in my brain since the first treatment. No that's all been fine.
What I struggle with is the actual ordeal of being in that machine for three quarters of an hour, not able to move and being deafened by the banging and whirring and tick tick ticking of the actual scan.
And the itch. There's always an itch that starts usually on the back of the leg or possibly on your ear just as the scan begins that you are desperate to scratch but that robotic voice from the control room has just reminded you to stay as still as possible. All the while the itch torments you and then the sweating starts because the itch is driving you nuts but you are not allowed to move.

With every scan I have, I have to fight the rising panic which starts as soon as start thinking about it.
I have now even resorted to using the breathing techniques I learned in preparation for birth (that is a whole other story) which if nothing else calmed me down. There's nothing like a deep breath in through the nose for a count of four before a long slow breath out through the mouth to the count of eight to quell the rising fear.

And so that is that.

Five years on and things are good. MS has little impact on my life at the moment thankfully. I am very aware that could all come to an abrupt end in a heartbeat but while the disease is in hibernation I'm in no hurry to wake it.

Sian x


  1. Hello,
    Thank you so much for writing your blog. I've just had my first cycle of Alemtuzumab treatment and found your account a great insight in preparation for, during and for the weeks after the treatment. I too had my treatment in the Heath and am a Cardiff girl! You even inspired me to write my own blog of my experience. Not that I've been brave enough to publish it yet mind.....! Anyway wanted to say thanks and how amazing that you haven't had any relapses since treatment. Onwards and upwards! Fran x

    1. Hi Fran,
      I am delighted you found my ramblings helpful and I really hope you will publish your blog. Please let me know when you do because I would like to read it.
      I also hope you are feeling well after the treatment and here's to a relapse free future to you!
      Take care,
      Sian x

    2. Hello!
      I've finally plucked up the courage to publish my blog! I'm running th Cardiff half marathon for the MS Society so thought I'd take the plunge....! Here is the link but be warned I am definitely not a writer...!!
      Good news for me too...9 months on from my first round of alemtuzumab and I am relapse-free! Hope you are still doing really well!!
      Fran x

    3. Hey Fran - really glad you took the plunge to publish your blog and I'm even more glad to hear you are still doing well after treatment.
      Super good luck to the half marathon... you are a braver woman than me!
      I really love hearing from fellow Alemtuzumab veterans and how they're getting on - it makes me feel like we are all sticking a big firm vees up at MS
      Keep on running, writing and being relapse-free!
      Sian x

  2. Wow, it is amazing to hear your story of success! I am ecstatic for you. MS can be a challenging disease and to know that a specific treatment has allowed you to enjoy life is pretty sweet. This is truly a blessing and seems deserving to you. You are an inspiration to those who could feel defeated, for you have shown them that it is okay to take a chance and enjoy life.

    Kacey @ Glendale MRI

    1. Thank you so much Kacey for your kind words - it means a lot x

  3. Fantastic to read that it's worked so well for you! ��

  4. Alemtuzumab is a humanized monoclonal antibody that is used as a drug for the treatment of chronic lymphocytic leukemia (CLL), cutaneous T-cell lymphoma (CTCL), T-cell lymphoma as well as multiple sclerosis. It acts via binding to CD52 which exist on the surface of mature lymphocytes. Alemtuzumab was approved as a second-line therapy for CLL. Alemtuzumab