This Monday I was due to go over to Manchester again. I was supposed to have some more tests on the Monday and be given the K1-70 trial drug for Graves’ disease on Tuesday. The plan is to then have stayed in hospital and be monitored until Thursday.
Grace had been selected to take part in a Wink Designs photoshoot in Stockport so we travelled over Sunday and I stayed overnight to make getting to the hospital in Manchester early Monday morning a bit easier.
I was stupidly nervous about potential side effects and the drug potentially causing my thyroid to go underactive, but I was excited to take part in trying to find a cure from Graves’ disease.
Unfortunately things didn’t go to plan. Last week I started getting excruciating tooth ache. I had a bit of swelling in my jaw. However I didn’t think anything of it as by Sunday the pain had gone and the swelling had gone down without any medication. But when asked at the hospital about any illnesses since my last visit and I explained about my tooth ache, I was told they needed to check to ensure the trial could continue but it should be fine. A couple of hours later the lead representative for the trial unfortunately decided that it wouldn’t be advisable to go ahead with the administration of the drug incase an infection was present in my tooth.
So that was that. I’ve been asked to go to a dentist and see what they say about my tooth, which I’m quite reluctant to do as my toothache has gone and the swelling has gone down so it feels a bit like wasting peoples time, and then they asked me to call back next week and discuss alternative dates.
In all honesty I’m a bit unsure about going back. I was really disappointed to be turned away at the last minute. I understand why they needed to, but it took a lot of effort organising cover for my classes, making alternative arrangements for Oliver and then having to cancel all of that and the idea of potentially having to make arrangements to do it all again in a few weeks is not appealling. On top of the arrangements I did have to avoid a lot of food and drinks as well as exercise.
I would really like to be involved in the trial but it’s a long way to go and a lot of arrangements to make just to be sent away again. Especially as every other day I seem to have something else that could potentially put a halt on the trial. As much as my immune system works extra hard to attack my thyroid, it doesn’t seem to be great at keeping away infections and illnesses. I seem to get anything and everything going around. So it feels a bit of a really poor gamble trying to guess when I might be well enough for nothing to get in the way.
I also still seem to be finding more and more things to react to. If it’s not a skin reaction, it’s sneezing and wheezing because of the cats or dog that I’ve had around me with no issues for years. So I’m also a little concerned that I’ll react to the new drug to.
Despite the disappointment of having the trial cancelled for me, we had a really nice time in Stockport. It was the perfect time to be cancelled really. We were in the area anyway. I think if I had travelled over to Manchester on my own by train again, and then it had been cancelled, I’d have been a lot more stressed out about it.
But Grace thoroughly enjoyed the photoshoot with Wink Fitnesswear. Everyone there was lovely to her. The make up artist was fantastic, the photographer and videographer were very professional and extremely artistic. And the Wink clothing was as beautiful and as well made as ever. The outfit Grace got to wear for the shoot, and keep, was perfect for her and she had some amazing bits and pieces in her goodie bag to. The other girls at the shoot were brilliant with Grace and made her feel very comfortable and included. And the snacks provided for everyone on the day were spot on!
On top of the Wink shoot, spending time with Grace and Sean was also nice. Somehow Sean and I only fell out once over directions and the travelling as a whole was quite enjoyable. We had a mini break from our diet and exercise programmes and we needed it, but I am pleased to be back on it all again now and I quite like the idea of getting back to normal rather than having to restart everything again. But I’m not sure what I want to do now. I need to think about it much more and hopefully get a little more stable on my current medication before looking at starting the clinical trial again.
AerialEmma 