The listeria diet

In my time waiting for Lemtrada (alemtuzumab) treatment, I've been part of a very useful Facebook group with members who have had, or are having, or are thinking about having Lemtrada. It's a great place to get support and advice about a drug which has many possible side-effects and treatment regimens that differ wildly from… Continue reading The listeria diet

Checking in: three months after Lemtrada

The peonies in my garden are flowering for the first time since I planted them three years ago, so there's no doubt summer is almost here. The last three months since Lemtrada have passed in a blur, and I can't quite believe we're more than halfway through May. It feels like a good time to… Continue reading Checking in: three months after Lemtrada

101 Ways to be Happy #3: a day on the South Bank

Today is the three month anniversary of my discharge from hospital following my Lemtrada treatment. Since it was decided that I would have Lemtrada, a year and a few years ago, I've been on a special anti-listeria diet. It's been a challenge - no chilled ready-to-eat food, no unwashed salad or fruit, no cured meat… Continue reading 101 Ways to be Happy #3: a day on the South Bank

Lemtrada: day four

It's day four of Lemtrada, I have one more night in hospital and one more night of treatment, and the rash is here! I currently look like I have the neck of a 16-year old boy after his first experiment with his dad's razor. It started with itchy arms when I woke up this morning,… Continue reading Lemtrada: day four

Lemtrada: day three

It's getting a bit like Groundhog Day in here. I woke up at 4.30 this morning and just couldn't get back to sleep, I think thanks to the steroids rather than any disturbance on the ward. I put my Calm app on my phone and listened to a story about the Nordland Express in Norway,… Continue reading Lemtrada: day three

Lemtrada: day two

My last two entries were quite short and I didn't go into much detail because I was tired and a bit too spaced-out to get my thoughts in order. So I'm writing this a bit earlier in the day, and hopefully I will remember all the things I meant to say! I'm now hooked up… Continue reading Lemtrada: day two

The last wait

It's been a long time coming, nine months to be exact, but finally I am here in hospital ready to start Lemtrada tomorrow. It's not lost on me that I could have gestated a baby in the time I've waited for my lymphocytes to recover from the bashing that two and a half years of… Continue reading The last wait

The Riddle of the Sphinx

"What is that which has one voice and yet becomes four-footed and two-footed and three-footed?" This summer was challenging. In April I started relapsing, my fatigue becoming overwhelming and my walking getting markedly worse. I tried high-dose steroids to treat the relapse for the first time, but they didn't make any difference to my symptoms… Continue reading The Riddle of the Sphinx