Now I am sat in a cafe outside of the pharmacy. The wait is two-three hours. Yup, two to three hours. . . that's not the best of times.
In a new blog, Hellie chronicles her journey taking part in a clinical trial for the drug bexarotene. Part 5, where Hellie waits for drugs, for a loooong time..
Hello, I am still here! That's a good start I reckon. I have now been taking my drugs/placebo for a week. If you read my blog or saw my vlog from last week, you'll know I struggled swallowing the pills. It's still not easy, but I am getting better at it. I emailed the research nurse and told them my stomach was gurgling an awful lot after taking the pills so they suggested taking them with some food, which seems to help. So now I take the tablets with my evening meal.
How am I feeling? How considerate of you to ask! I am fine, I have not noticed any of the listed side effects . The only difference this week compared to the one before is that I am feeling very tired. There have been days when I had to sleep during the day, as I was so knackered. But that could just be the wonders of MS combined with the heat we are having. But I am normally up and down with my fatigue.
I ran the British 10K on Sunday, which went well. I suddenly thought last week, hang on I haven't spoken to the research team about exercise. It does state on the paperwork that it's important to exercise, but there's a difference between doing a little workout and running 10 kilometres in 30-degree heat. But they it was fine (and good luck!) so off I went and managed (somehow!) to have a really good run in the heat.
I am aware of every single little pain now, which is a bit annoying. I am constantly thinking 'Oh here's a tiny headache, was that on the list, do I need to remember this?' I have been a bit headachy recently, mostly due to the heat.
Sleep hasn't been great, but again, I am very bad at sleeping. In fact, on the day of the race, I woke myself up swearing like Hugh Grant in Four Weddings and a Funeral, because I thought I had slept through my alarm. I was staring at the clock seeing 7.30am and started swearing like a trooper. Turns out my brain thought it was hilarious to let me dream I had missed the alarm and that it was actually 20 minutes before it was meant to ring. So instead of waking up from a ring, I woke myself up by swearing in my sleep. Classy Hellie, classy.
Today my appointment was super quick, they took my blood, counted my pills, I got a new prescription, and told Dr Nick I was feeling fine. He showed me my previous (pre-trial) blood results saying they were all good. He was also telling me about the values they potentially could see go down. He said about 25% of people taking Bexarotene get thyroid issues.
I once again had to fast for my appointment so was longing for my coffee. Once I was done I was sent off with my prescription to pick up more drugs. Now I am sat in a cafe outside of the pharmacy. The wait is two-three hours. Yup, two to three hours. . . that's not the best of times. But I got my coffee, yay.
I guess that is it for this week. I am back again next week, to see what my blood is doing. I am kind of convinced that I am on the placebo, but I am guessing it is too early to tell yet! See you next week for the next instalment of the Bexy diaries!
MS in the Media
17 May 2019
- Statin has potential as SPMS drug
- EastEnders MS storyline
My Vespa adventure for the MS Trust
13 May 2019
For his next fundraising adventure, our supporter Nick Jolly will be riding 2,500 miles to Hungary on his Vespa scooter. He tells us about the inspiration behind his challenge.
"When you lose something, it makes you appreciate what you have"
13 May 2019
Danielle MacGillivray stars in our new film, Danielle. Here she tells us about her MS diagnosis, why she wanted to share her story in the film and learning to "appreciate the little things" every single day.