A difficult couple of days with my feelings ranging from confusion, frustration and even anger. Having been much brighter after the last transfusion D has been looking increasingly pale and has become more breathless. I spoke to the chemo nurse yesterday and she said to get a blood test urgently which she would check that afternoon and sort out a transfusion. Having rushed round to get him up and myself ready she then phoned back and unusually he picked up the phone. He said that she'd talked to the consultant who'd said NOT to have a blood test, there were no slots for transfusions anyway and that she's referred him to the hospice. David is a man of few words and I couldn't get any more out of him. Today he was much more breathless so I phoned the hospice nurse.
He was as confused as me about David being given stilboestrol as he like me thought that there were no other options after Abi in David's situation. His feeling was that this was the beginning of a transfer to hospice services which is what I had suspected. He also suspected that the stilboestrol was a shot in the dark and not really expected to make much difference. I am not very happy that this has all happened second hand and that the consultant has not shared her reasoning directly with us for the new medication, the halt on transfusions and the hospice referral. I know this has all happened between appointments with her but she was around when we were at the hospital last week. We don't see her again before 4th April. Somewhere there has been a breakdown in communication, I've always quite liked the consultant but I've felt quite upset about all this. David has been quite passive about it all.
However I am very happy with with the hospice response - they are going to arrange an assessment with one of their doctors next week and can organise transfusions as needed. The nurse talked to me for ages and although it was bad news I felt better for his honesty and support. He did feel though that we were talking weeks now. So hard to try to behave normally knowing that, but David makes it quite clear that he doesn't want to know. His psa was 133 last week and 212 this week!
He has stopped eating again - one banana and 3 Ensure drinks a day - and he is drinking less. Even his voice is much quieter when he does speak which is not much. Tonight I really struggled to get him off the sofa and upstairs. I think we may be approaching a bed downstairs very soon. After struggling up the stairs tonight his hands and feet had a definite bluish tinge.
Then my daughter came home all excited as she'd got the job she really wanted. So at least there's some good news.
I'm feeling very wobbly tonight - thank goodness my mad friend is coming over tomorrow.
Rosy