I would like to think that, whatever outcome this trial has, I have participated in something that brings hope to fellow MSers.
In a new blog, a person with MS chronicles her journey taking part in a clinical trial for the drug bexarotene. Part 6, where Hellie chats to other people on the trial and ponders what it feels like to take part in research.
It's once again Tuesday and I am back in Cambridge! It's starting to feel like a routine now. In order for me to get to the hospital, I have to get my kids taken to the childminder early. Thankfully my husband can drop them on his way to work, as I have to set off at 7am to get to the train station. 7 o'clock in the morning, after a bad night's sleep without breakfast or coffee is not fun. I should probably have an 'approach with caution' sticker on me. Why no coffee you ask? Well if you have read my other blogs, you will know I have to fast before my blood gets taken at my appointments.
Today was actually really interesting, when I arrived at the research clinic just before 9am, the waiting room was really busy. Before there has only been one or two other people there. Dr Nick (I am sorry, as a long time Simpsons watcher, I can't write that without hearing "Hello everybody" in my head, sorry Nick, you must get it all the time and don't find it remotely funny) had warned me that this clinic would be a busy one. The doctors all popped out and said "hello" and let us know that it was indeed going to be busy. Actually it was ok, because I got a chance to chat to some of the other people in the waiting room. Most of them on the same trial as me, or waiting to start it.
We got chatting, first topic, the size of them pills, everybody chuckling a bit knowingly. We exchanged tips on how to take them, with a bit of food and plenty of drink seemed to be the consensus. One of the people there was on his last visit and had already finished the trial. I had to stop myself from really grilling him, but it was very interesting to hear what he had to say. His thyroid values had changed a lot, so it was clear that he was indeed on the drug and not the placebo. I was very interested to hear he had been fine otherwise with no big side effects. The rest of them, I think weren't sure if they were on the drug or not. But we all seemed to agree that, whether we were on the drug or placebo, it was a good thing we were doing, as seeing research in action like this is a very positive thing. It really gives you hope for the future of MS drugs.
The rest of my appointment was rather uneventful, not much to report, blood work from last week was fine. They asked how I was feeling (I have been very fatigued), counted my pills and gave me a new prescription. Waiting at the pharmacy, I was reunited with my beloved coffee.
I got to meet a new doctor who I hadn't met before, who also had a guy with him who had been working on the trial for two years, but hidden away in the labs. I jokingly asked him if he had cured any mice. But I don't think that was what he was working on. They were both really nice, everybody involved in the trial is lovely. I find it all so interesting, I could quite happily stay around at Addenbrookes and just chat to these awfully clever people about the work they do all day.
In all seriousness though, one thing that has surprised me with being in this trial is the way the doctors talk to you. It isn't at all like when you go to your GP and you can sometimes feel a bit belittled. All my interactions so far have been fantastic and you almost feel like you are part of the team. Even if you are the lab rat. There's no talking down to you, you don't feel stupid for asking questions and what I find best of all, is that they are all so enthusiastic about the trial. Which again brings me back to the point above about feeling like you are doing something good, being part of something that can change things. I would like to think that, whatever outcome this trial has, I have participated in something that brings hope to fellow MSers.
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