Thanks all for you fab comments – I am hoping to go and see my dad this weekend and have a discussion with him abut maybe me getting to see/speak to his care nurse or even try and get some time with his consultant. I am trying to stand up for him but he sometimes sees it as getting too involved.
I have already gone through this before when an earlier partner had prostate cancer and I nursed him from diagonis to death so I know how hard it is but its harder when you dont have that involvement and information. My dad opted to not receive copies of letters "as they have all they need on file so I dont need it, if I need to know anything they will tell me".
I know get the staging thing so am not concerned about that but I know there are different types of myeloma – we dont even know what type he has. He has had chemo and the first lot he just seemed to sail through and his condition improved but he wasnt followed up to see if it was in remission – just watched. then when the results changed and the levels got bad again he was put on a higher dose for longer, again sailed through, had no bone pain at all but lost weight rapidly. Again treatment was stopped as the levels lowered which I hope is good. He now spends 3/4 of the day asleep cos of the illness and the fact that he is on large amount of oramorph and morphiin patches as well as nerve pain drugs. He is still in pain, more so some days than others. The appearance of his back has completely changed, its more dipped at the bottom and more hunched at the top. I just hate seeing like this and feel so so helpless.
I try and have the same attitude as them of just go with it and so long as they dont hear anything bad assume all is good but I am not that kind of person. I like to know facts and information so I know where we are, again I guess that comes from my previoous experience. Also, and I know this may sound morbid, I dont want to waste time as we dont know how much we have. And again I know from experience how precious time is – my partner went from normal to dying in less than a month so I know how quick things can change. I just want the best for my dad but he doesnt always see that.
The lack of checks he has is probably the most frustrating and also the fact that they never have the most recent tests results. How can you give the most appropriate treatment for the cancer now if the blood results you are using are the ones taken a month or so ago rather than the ones taken today? Also when a patient comes to see you and you can see he has physically changed and he tells you are in pain – how can you just say oh its part of the illness without actually examining him? It just doesn't make any sense to me.
Thanks again all for taking the time to reply, its all so greatfully received.
hugs
Fi
