This topic contains 6 replies, has 5 voices, and was last updated by 
teds31 11 years, 5 months ago.
Good afternoon all
I am hoping some of you may be able to give some peace of mind/advice/info to help me deal with the frustration I have regarding my dads treatment fr Myeloma. He is 79 and was diagnosed just over three years ago. Since i found this site i have known that it is possible to have this disease staged so at least you know where you are in the scheme of things but he has always been told and i have been told twice that they cant/wont stage it. so we have known exactly what type of myeloma he has or where he is within the disease itself. The treatment, or lack of is becoming ever increasingly frustrating and i am at a loss of what to do.
My parents are of the generation where the doctor is always right and if there is something to tell you they will. They dont ask questions and if they do they never question the answers. I have been with my dada couple of times but I just end up being made to feel small and like i am asking stupid, pointless questions and end up with no clear answers.
If it wasnt for his palliative care nurse, he would be getting nowhere at all. they have stopped doing normal checks when he goes for routine check ups, llike blood pressure and he has now only just found out after being referred by his nurse to a Macmillan doctor that he has high blood pressure, first time in his life. He doesnt seem to be scheduled for regular scans/x-rays and he wasnt physically/hands on examined for over a here despite the physical shape of his back having changed and him mentioning he was in chronic pain.
It feels as if they have kind of made their minds up as to what treatment he is going to have and thats just simply high doses of morphine, which now means he sleeps for about 15 hours a day. He has had one does of radiotheraphy and a long course of chemo but again has now had those stopped and has just been left.
I am at a loss of what to do or where to turn and my dad is unkeen to let me go with him as he feels its taking his last bit of independance away and i have to respect that – has anyone else suffered this kind of treatment, felt this way, etc?
Fi
Hi there, sorry to hear about your frustrations with your father's treatment. I don't know what to say really but have you contacted the Myeloma nurses on this site. They may help give an insight into the reasons for the lack of treatment be it age or general fitness. It is a horrible illness and is so individual as well. Please don't feel like giving up, you father deserves the same as everyone else and sometimes it may pay to remind the powers that be of that fact.
Don't give up ,I am 81 and have had MM for about 6 years but its slumbering and I don't need treatment, but I get scans when I need them etc. It could be that your Dad isn't getting treatment for some reason that you are not getting the info on. You do need to ask, I know what you mean about your Mum and Dad not wanting to ask, but if you could just get there and ask the questions I'm sure they will tell you. Ted
Hi Fi,
That sounds tough, being on the outside and wanting to know more. It's hard to comment in some ways but a few things:
– staging in myeloma isn't like in other cancers, and it's not so important, or at least it's only one of several things which might predict things for you (age and general health are relevant, also how you respond to treatment. For example, I counted as stage 3b due to the state I was in when diagnosed, but I was lucky to have a very good response to treatment, and am now in complete remission so I don't think the 3b is (hopefully) something to worry about too much.
– having some chemo sounds normal, but the key thing is do you know what effect it had and why it was stopped? maybe it worked and that's why? (let's hope so!) but equally if it didn't work and was stopped, that is different. And even if it worked well, during remission or on a stable plateau there can still be issues of pain etc which do affect your quality of life.
Good luck with trying to find a way to know and understand more about the exact situation fo your Dad. It is tricky about wanting to go to the appointment and not being able to. I don't know if you could ask to see copies of the letters afterwards? (I always get a copy of a letter which my consultant writes to my GP, it takes a week or so to turn up but it's a good way to look back over time and see what has happened). And/or if you talk to Ellen maybe she can tell you two or three key questions to ask, and you could even print them out and give them to your Dad to take in? Or if there is a Macmillan nurse they could perhaps hold a short discussion session – I always felt less bad taking up their time whereas it's true with consultants you can feel they have a very busy schedule so you only raise specific things with them.
I guess also I have been lucky in feeling very happy overall with my care, but it may be that there are issues of concern with the particular hospital in which case you are very much within your rights to raise those. Perhaps a second opinion could be useful? I'm not sure what to suggest as I suppose I haven't had the same concerns, but i've certainly read that a second opinion is one thing to consider.
Best wishes,
Helen
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
Hi Fi
I can understand you worrying,as it is obvious to you that your Dad is deteriorating ,and you are not in a position to know,what your dad wants to actually know!! I think this is very important as some people just go along with what is happening and do not want to know what the out come will be.
The one thing I do know your dad should have as much pain relieve as possible even if he is sleeping a lot,if you want to know the position,get your dad to sign a letter giving you permission to speak to consultant,then you can ask the consultant the position your Dad is in.
You must consider that your parents might prefer to not know?? Myeloma is a cancer that has no cure,and everyone comes to the end of treatment,when no more can be done.
You could always ring Ellen,she might be able to advice you better . eve
The delay in the results of tests is due to the time these take, I believe it can be a week or two depending on the tests required. Ted
The topic ‘My Dad’ is closed to new replies.
