My partner was treated last week with clofarabine and cytarabine and poor guy seemed to have every side effect going. Unfortunately, the staff aren't familiar with the side effects of these drugs. My partner thought he was a goner, he got Acute Inflammatory Response (soaring temperature, sweats) from one and the flu like symptoms of the other. After five days he got hand-foot syndrome. Thanks to the MacMillan treatment information I could see that he was having side effects but the staff kept talking about him having an infection. He has had dreadful nausea and couldn't keep anything down, at last he is going to be fed by TPN (nutrients into blood system via a drip). I am very relieved about the TPN as I asked about it over a week ago as I was extremely worried about him not eating.
If the staff were aware of the side effects I think he might have been less anxious and I wouldn't have felt like I was talking to a brick wall...
His hands and feet are looking a lot less swollen, but he still can't walk and we have to wheel him about at the moment.
When I got to the ward tonight, I looked through the door to his room and he wasn't there, another patient was sat on the bed, nearly had a heart attack, thought he'd been sent to HDU without them telling me. It turned out the ward is being deep cleaned due to a superbug. He'd been put in the room next door.
Asked him how the consultant's ward round had been and he said he hadn't been listening. Going to take a voice recorder in so that we have an idea of what is going on. I think my partner was probably very drowsy with the drugs and fatigue, but have no idea really where things are up to.
So I'll just have to keep hoping and praying that he's going to be OK.
