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
The possibility of myeloma of the fluid surrounding the brain was something we only found out about a few days prior to death – the man in charge of the trial had been on holiday for a week, and when he returned my father had deteriorated significantly, only able to say odd random words, no real eye movement (but lots of arm and leg movements) – the brain fluid myeloma was something he suggested was a possibility for why that had happened, or could've been a brain bleed or a stroke, they couldn't perform a CT scan to confirm this.
He did say that if it had been any of those things, they couldn't have done anything to correct it anyway… though as it turned out it wasn't in our case. But he then said they'd recently had a similar case, and that the risk was about 5%, but didn't elaborate on it further, i'm afraid.
Glad to hear you were able to get married and that he's still in their fighting, as for the confusion my dad had been confused/dazed quite regularly prior to the last week, not surprising with the mass of tablets he was on, and the effects of the steroids when he was first in (seeing all sorts of disturbing things at night that really scared him).
As for whether it was terminal or not, what I meant was that we were told it was treatable with tablets, and should be looking at the bare minimum of a year or more (certainly not 3 months!), dad was pretty fit and healthy apart from back pain. Had they said at the time that he'd not see out the year, we could've prepared ourselves and him for that, and sorted out his affairs etc.
Good luck and make the most of all the time you have, particularly while you're able to communicate properly with each other – nothing worse than not knowing if someone you love even knows you're there, or if they're in pain, for a whole week.
My dad was diagnosed with multiple myeloma in January, and following a biopsy, was offered the chance to be on the Myeloma XI trial at one of South Yorkshire's leading hospitals. It was sold to him as if it was the only real option, and that it would add as much as 10 years onto life expectancy. As my dad wanted to be with us as long as possible (and relieved he wasn't diagnosed with terminal cancer), he believed in this and signed up in late March.
He was randomly selected to be on the Revlimid arm of the treatment (rather than CTD), and after the first day taking the treatment in hospital, returned home to continue it there. on the morning of day 11, we contacted the hospital as he was feeling unwell (high temperature) and he returned to hospital, where he remained. He had been taken off the co-trimoxazole antibiotics the previous Thursday as they'd made him come out in a severe rash across his head (at first some thought it was shingles).
In mid-April, after having been in good condition (apart from some minor concerns about the liver and kidneys), he deteriorated rapidly, and was unable to communicate with anyone apart from odd random words. After a week of this, and appearing to be in severe pain, he passed away over the Easter weekend, with the doctors feeling it was a reaction to the trial drugs (Revlimid, Dexamethasone and/or the antibiotics), and the post-mortem confirmed this was a contributory factor (the chemo treatment and the myeloma).
The reason i'm posting is just for those who haven't committed to the trial yet – just make sure that whoever is trying to sign you up is doing it for the right reasons – and that ALL potential risks are examined. The man in charge of my dad's trial admitted to us last week that they wouldn't/couldn't tell us all of the likely or possible problems of going on the trial (as opposed to just taking the standard treatment) as it would 'scare people off going on the trial', including a recently diagnosed case of myeloma of the brain fluid they'd had, which they didn't make us aware of as 'it was only a 5% risk of happening'.
And one thing I have learnt from this horrible experience – if you are unfortunate enough to be diagnosed, just hope that a) you're not in this area, and b) that you don't have to deal with a specific McMillan nurse – I was led to believe McMillan nurses were well trained in dealing with relatives in these difficult situations, which when you're being told there's nothing else they can do for your dad, you really don't need to see the McMillan nurse sat alongside grinning away as if she's watching a tv comedy.
Good luck to all of you on the trial, hopefully ours was one really unfortunate freak outcome and you'll all receive better care and luck – I would hate for any of you to suffer as we have, particularly the conflicting information being given depending on which doctor is present.
