Hi Judy and everyone, thank you so much for your kind words. Unfortunitely, a very poorly dad was moved to the local Douglas Macmilan hospice yesterday morning. He is on no medication at all and hadn't eaten for over a week. The hospice is lovely and the nurses are wonderful. He is still quite "with us" and he has asked for his favourite girl, Jessica to go and see him (she is my very nearly nine year old cocker), to go and see him. I was a total nervous wreck when I got there last night and luckily my OH drove for me. The nurses had to take me into another room as a broke down when dad asked for a drink of water. I managed to feed him some ice cream and jelly and he even managed a cup of tea, although my OH said that as a dog person I make a hopeless nurse! One of the head nurses has offered to refer me to councelling and I think that that is a good idea as I just can't cope with the fact that if he had stayed on the trial or at least dialysis then we would be planning his homecoming. I think that his fate was sealed when my stepmum would not have him home and I think that he decided then that noone wanted him. It all just seems so unnesessary. You are all wonderful people for fighting this illness x
Hi Tom and Min, thank you so much for your kind words re dad. I've just realised how bad my spelling is! It's all down to the Fibromyalgia so I do apologise for that! I'm really cross today as I've got a chesty cough and a the start of a cold. I don't want to go onto the ward as I know that the folks there are really poorly and I don't want to pass anything on to them, or to my dad. We've now had another think through and think that dad has his good days for the day/days after dialysis, or at least we think that that is the connection. It must take it out of him, plus with the effects of the myeloma he has a double whammy. Stepmum and eldest sister have been to see him and say that he is brighter. I feel so selfish to say that I can't wait to have him home!
Hi folks, I'm so sorry to be only just updating re dad.
The good news is that I've received my file from the office and am working my way through it now. It's taking time as I have Fibromyalgia and since dad was diagnosed the old "brain fog" is causing me some problems!
Well, last Sunday we vistited day on the way home from a cocker club show. We gave him a surpise as we weren't planning on visiting but his favourite girl, Jessica had won a rosette so we thought we would call to show him. When we got there was in his clothes instead of pjs and had had a busy day with a walking stick that the ward had given him! My stepmum had visited in the afternoon and dad and relatives had gone for a walk around the hospital grounds. He managed so far with the stick and then hired a wheelchair for the rest of the way. He was up and down with his stick when we got there and was really enjoying himself. However, they have started him on Oxycontin this week which has made him really drowsy. He is continuing on his 3 sessions of dialysis a week and I'm pleased to say that most of the the fluid seems to have gone and his hands, etc look "normal" now. My stepmum told the hospital and dad at the beginning of the week that she didn't want him home but rang me the day after to say that she had had a sleep;ess night and couldn't get is pleading eyes out of her mind. She told the hospital that she had changed her mind and that whatever she wants him home. This week the hospital have introduced him to the ward where he will be going for dialysis once home and they are getting everything in place with his care plan. However, I say him last night and he said that he wants to come home but there's no point as he is so tired and is still not eating well. I had a quick word with his nurse and she says that the problem we have is that he had the kidney problem paired with the myeloma so he will be tired and they can't improve his eating any at all. He just need to eat what he wants when he wants. I then spoke to stepmum who has also said that there is no point in him coming home either! Everything is so "up in the air" again.
You are all wonderful and a great comfort to me knowing that we aren't on our own. One of my elder sisters and my partner visited dad this afternoon while I was away at the dog show. He was in great spirits again and was just having an extra two hours dialysis. I think that they are trying to get more fluid off him. We now have had two good days so I hope I aren't speaking too soon when I say that there seems to be a light at the end of the tunnel.
Gina, you have especially helped me telling me about your mum. I thought that we had days left with dad and you have given me hope saying that your mum is in her second year. I know that every case is different but it does help me to have hope.
My main concern now is about dad leaving the hospital. I really don't want him to go into a home but accept that my stepmum is worried about what might happen. I now know that we need to introduce ourselves to the McMillan nurses but am scared stiff of "treading on my stepmums toes". When dad was first diagnosed the haematologist gave us some leaflets re the Myeloma which my stepmum snatched and took home. I asked my dad to ask her if I could have a look at them but she still hasn't allowed us too. When sister and partner visited this afternoon there was a DVD on dads table called "coping with kidney failure". My sister asked what it was and my stepmum snatched it off her and put it in her bag saying "that's for me, not you". It's really hard to stay calm. I accept that my stepmum may see the "looking after dad" situation as up to her but we really love our dad and want to help all we can. I really feel at the moment as if he will be in a home without the family having a say at all. It's such a difficult situation and we really want what's best for dad.
Hi folks, thank you so much for your kind words. It's really helped me to know that we are not on our own. We visited dad this afternoon and he was much "chirpier". We are at a dog show tomorrow and I have had my orders that we have to bring him a rosette back!
We have had a good talk to the nurse in charge of his care and also one of the doctors. He says that dad will be having one lot of chemo a month and steroids two days before chemo and two days after. Dad will also continue on the dialysis three times a week. He also has some fluid on board, not in his lungs but surrounding them which adds to his breathlessness. The scan this morning cofirmed no blood clots (much to our relief).
Our major problem now is his homecoming. My stepmum is 79 and is bad on her legs herself. She has said that she doesn't want him home but wants him to go into a home. The hospital said this afternoon that he is nowhere near the stage for palliative care, in their opinion, can lead a full life before things "move on". They have suggested that, with their help, we sort out care four times a day for him when he comes home. However, my stepmum had a scare on New Years eve when he was allowed home. His body swelled, his face looked as if he had been in a boxing match and he was very breathless. I have offered to do nights once he is home but she has said that that is irrelevant as we would wake her anyway. I just don't know what to do. I just don't want my dad to go into a home where he would probably give up anyway.
I forgot to say, my dad seems to have good days and bad days. He's struggling with breathlessness and the versions we've had so far is:-
1. it might be a chest infection
2. in Myeloma your blood is very think and he may have blood clots on his lungs (he was having a scan this morning for these).
Do the hospitals give up on you if you get this over 70? The family feels as if the hospital have given up on him since dad told them that he wanted to come off the clinical trial. Any advice would be much appreciated.
