Hi all, thanks for your messages – it has been a difficult time, especially with the funeral last week.
Sharon, don't worry unduly over this, i'm sure you've looked into everything thoroughly and are aware of the side effects everyone has mentioned – I think we were very unfortunate that while my dad was admitted, the study lead was absent for a week, and in that week there seemed to be a lack of a cohesive approach to what they should do, with the trial team and pain team treatments contradicting each other (as they have different aims), particularly if liver issues develop that were not present before.
More than anything, the lack of communication at times between these teams and the nursing staff was worrying – e.g. information about the three fractured ribs that had shown up on x-ray were clearly not passed onto the nursing staff, who unwittingly moved dad onto that side, increasing unnecessary pain.
It didn't help that when initially admitted for the second time (on day 11 of the trial), that the Haematology ward that he should've been on was full, and so he was stuck out as an outlier on the Urology ward for over a week, where the doctors barely visited – which was made worse by them taking him off the Revlimid and not replacing the Co-trimoxazole (that had caused major skin rashes the week earlier at home). Not having the antibiotics or the Revlimid to help against the myeloma can't have been a good thing for the last few weeks, fighting against myeloma.
So basically my advice is that you (or your family) keep on at the doctors to keep you informed as to how things are developing while you're in there, from experience if you don't make yourself heard, they're quite happy to leave you to it, what with all the pressures from NHS cutbacks on top of the already strained service.
Don't make the mistake of just being overly polite and not wishing to put the doctors or nurses out, my dad was far too much of a gentleman and would put up with things. Make sure they keep you in the loop, it took us weeks to find out the results of some scans – just make sure they don't treat you as 'just another number on the trial' rather than a person.
Good luck to you all – I truly mean that as we've seen how devastating this can be to the families of those suffering, as well as the patient themselves – and just make sure you do everything you want to do while you can, and get any affairs in order, as if/when things do worsen, it can be very sudden with no warning, and i'd hate for you good people to leave all the heartache for your families to deal with in such difficult times.
And please as i said don't worry unduly – we may just have been extremely unfortunate to have encountered well below par care in our case, which was exacerbated by the double bank holidays, and the skeleton staff that was on. Hopefully we've taken enough bad luck for all of you.
Just make sure you keep the doctors on their toes, don't be fobbed off. And as the lady from the bereavement service at the hospital told us, if you do experience substandard care or worse, make sure you report it, as it's the only way to make sure the doctors will learn from their mistakes – just accepting it doesn't help you or those patients that follow.
Good luck all, and thanks again for your kind thoughts xx
SharonM 13 years, 6 months ago.
