[Nicola2708Participant]

Hi been reading through this site since my dad was diagnosed in august. Just need some help or advice anything anyone can offer. Dads been really poorly the last 7 weeks and has had to remain in hospital. He's now half the man we new weight loss, he also lost about a foot in height. Hes had lots of Infections and for around 5 weeks didn't know were he was or who he was. We've had him home for several days and have today had to take him bk to hospital. He's unable to pass water and not been for a poo in a week, despite being provided with a laxative solution. He's quite depressed our conversation always involves him dying sooner rather than later, he's not coping well. I'm trying to support him. Just stuck I don't won't him to see I'm upset, just want to hold him and keep him safe. Please if any one can offer any advice I would really appreciate it. Thank you Nicola x

[mhnevillParticipant]

Dear Nicola

I am sorry your dad is having such a distressing time and that you are having to watch while feeling helpless.

Sorry I haven't got any specific medical type advoce to give you, but it does strike me that you need to have an honest conversation with your dad's medical team. Although it is difficult to say it, it would be terrible to put your dad through heavy treatment if there is not a strong chance of success. However, as you will have seen from watching this site, there are many who come back from the brink.

Do badger the medical team and speak to someone who knows what is going on.

Love

Mavis x

[Nicola2708Participant]

Thanks Mavis, how very kind of you to reply. I've spoken with doctors specialist nurse, they've said while there concerned, they still want to carry out this cycle of chemo. Ive had the discussion about dad not having to go through more than needed. The first lot of chemo had no effect which was tablet form along with 6 session of radio therapy on his chest bone and spine. The treatment he's receiving now is what you would be given if you had come out of remission that's how the consultant explained it. I can't believe how aggressive the mylomea has been. My dad was so healthy, very active and still working full time as a builder. Xx

[brochoParticipant]

Hi Nicola so sorry your dad is having such an awful time, it must be so hard for you Its little wonder he is feeling down after having been through so much so try not to take it too much to heart when he talks of dying The doctors wouldnt put him through chemo if they didnt think he had a fighting chance. Did he have radiotherapy recently? That could be the reason he is having bowel and bladder problems but it should get better fairly soon if that is the reason Unfortunately a lot of the drugs we take can cause constipation , sometimes I have to take 3 different laxatives to keep things moving I hope they can sort out the cause of his infections very soon and he can start to feel better but in the meantime talk to his specialist nurse again so that you know exactly which direction they are taking with his treatment . I am sorry I cant offer any useful advice about your dads treatment but as Mavis said dont give up a lot of us have been really low and managed to bounce back again Please post when you need to , its a huge burden for you to carry and there is always someone here who can understand Hang in there and best wishes to your dad Bridget x

[eveParticipant]

Hi Nicola
Sorry you had to join this site,as for help no one would be able to help with so little information,may i suggest you ring Ellen first thing tomorrow.

Why have they sent you father out with out.with out some form of back up,How an earth are you coping ,what medication is your dad on,lots of questions,please ring Ellen, Eve

[Nicola2708Participant]

They said they were happy to let him go home, returning twice a week for his chemo injections. We were released with morphine patches, and liquid morphine which is available for him every 2hrs. The other drugs I'm not sure as there not here at the minute.. We were due a nurse out today to help arrange support in the home but I had to cancel as we were not there. To be honest eve it all goes a bit above my head, something just isn't wright. I just have a feeling. He's scared to sleep, but then when he does he doesn't want to wake up. I'm waiting for specialist nurse to call. The lack of communication at the hospital is disgusting, I've turned up and dads not eaten because he couldnt even lift his spoon or fork, medication left on his bed side table again not able to lift a glass and hold tablets. Been horrendous. Xx

[eveParticipant]

Hi Nicola
I know its hard but may be your dad is better off at home,you do need that home visit to asses how much help is needed,you do not say if he has a carer who can provide a good level of care.

I know what hospitals are like,the nurses just do not have the time,My husband spent 22 days in hospital 9 in itu,I spent 12 hours a day there making sure he was clean fed and watered,basic nursing skills,which seemed to be lacking.
My advice is get your own GP to come out. Eve

[Nicola2708Participant]

Thanks eve, that's my plan. We don't have a carer at the minute, I've been granted flexible hours, so between me an my husband we've managed. But we do need a little extra help. Which was what assessment was for, but will need to wait again now. Thank you for you help xx

[tinkerbellParticipant]

Hi Nicola
Sorry to read about your Dad.

My sister is a ward manager and having been an in patient myself I know the limitations on the nursing staff in hospitals but the majority of complaints result from relatives or patient's not speaking up. My advice would be speak to the ward manager about the meds etc and they can in turn ensure that the nurses don't leave him to take these himself.
I hope that you all find some peace through this journey and wish you strength to help your Dad. He's really lucky to have the support of a loving family. Pamela xx

[Nicola2708Participant]

Thank you Pamela, I've spoken to ward manager several times and the consultant as well, I no the nurses are busy but there is such things as basic care, it's really helping being on here every ones been so helpful.

Love Nicola xx

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