Help Simon fight his Cancer for his Kids

Hi from the trenches! We have had a bumpy few weeks including our newish car shitting itself but thats all sorted now (or rather it will be in 3 months time once a new transmission is fitted!). Cycle one involved introducing the trial drug - small, medium and a large dose (the large will be the usual dose). After the third dose, along with the usual fevers, his skin has dried out and is peeling, and, most painfully, he lost the top layer of his tongue, and inner mouth. His tongue was fire engine red and looked so painful. We are told this is the worst and it will gradually improve, and it is albeit slowly. This makes eating near impossible (think of when you burn your tongue on a hot drink - except that feeling stays with you and its your WHOLE mouth). So its protein shakes, smoothies, ice blocks, custard, yoghurts, dairy foods, anything cold. He's dropped 10kg since the start of the trial.

We have oral steroids, steroid mouthwashes and little tablets that can coat the inside of his mouth and tongue which provides some relief. We know it will improve and hopefully go away completely - and its not just Simon suffering this either, its at least 3 of the other 5 participants.

On Tuesday he had a second drug introduced called carfilzomib which will be used in this cycle with the study drug.

So, thats just an update from us. Laying low and trying to make Simon as comfortable as possible! Thank you all for reading my very long essay!

Love Libby x