Gems
Adult Guinea Pig
Sorry I just want somewhere to moan. Steven got his appointment through for when we have to go down to Birmingham to discuss this drug trial so thats Tuesday coming at the royal orthopaedic hospital. He's got a CT scan at 11.20 in the morning so we don't know whether it's just going to be easier going the night before as it's a 4 hour drive without traffic and we've been told there's limited onsite parking so I don't want to get there and have to drive around trying to find somewhere to park when we don't know the area.
The drug trial is being run by a company called amgen and it's ultimately their decision whether he gets on this trial or not. He was sent over all the info on it that he has to read through before consenting to the trial and there's only 250 people globally going to take part, though I'm not sure how many people have been put forward for the trial.
It's pretty scary reading some of the side effects, and one of the points is we aren't allowed to have children for the duration of the trial and 10 months after he has finished the injections as tests on rats showed that it affected bone growth so they're unsure what effect this would have on a baby. The trial could go on for 3 years, and although we hadn't necessarily decided we wanted to have children over the next 3 years, it's a little scary to think the decision has been taken out of our hands.
There's also possible side effects like osteporosis, cataracts, pain in the extremities, headaches and the list goes on and on. We were told it would be 6 months but the documentation says a minimum of 12 months plus a further 12 months of monitoring.
We still don't know whether the hospital is going to cover travel expenses and have just been advised to keep all receipts as "these things take time" which is all very well saying that but doesn't help that we're going to have to be forking out for petrol and hotels and we aren't made of money. I'm getting completely fed up of people acting as though this is all nothing and being blase about it all. I just really want to get away from it all at the moment.
The drug trial is being run by a company called amgen and it's ultimately their decision whether he gets on this trial or not. He was sent over all the info on it that he has to read through before consenting to the trial and there's only 250 people globally going to take part, though I'm not sure how many people have been put forward for the trial.
It's pretty scary reading some of the side effects, and one of the points is we aren't allowed to have children for the duration of the trial and 10 months after he has finished the injections as tests on rats showed that it affected bone growth so they're unsure what effect this would have on a baby. The trial could go on for 3 years, and although we hadn't necessarily decided we wanted to have children over the next 3 years, it's a little scary to think the decision has been taken out of our hands.
There's also possible side effects like osteporosis, cataracts, pain in the extremities, headaches and the list goes on and on. We were told it would be 6 months but the documentation says a minimum of 12 months plus a further 12 months of monitoring.
We still don't know whether the hospital is going to cover travel expenses and have just been advised to keep all receipts as "these things take time" which is all very well saying that but doesn't help that we're going to have to be forking out for petrol and hotels and we aren't made of money. I'm getting completely fed up of people acting as though this is all nothing and being blase about it all. I just really want to get away from it all at the moment.