I am writing this from the ER of Surrey Memorial. Just as Ben finally started to get some pain relief from the radiation (for the pain in his groin), a new pain slowly crept up in his rib / liver area. It started on Tuesday, and by Friday when Jeff flew home it became intolerable, accompanied by shortness of breath.
(Since I speak of Jeff flying home, I will take this moment to confess to being so consumed with all things Ben that I accidently drove Jeff to the Tswassen ferry terminal instead of the airport. That’s right …. I was driving along when Jeff inquired if I was certain that I was going the right way. “Of COURSE I’m going the right way” I replied indignantly. “They changed the roads to the ferry since you were last here.” “But I’m not going to the ferry” was Jeff’s answer. Duh. And there began a mad trek to find my way back to the airport on time for his flight. We made it. Sorry Jeff.)
In any case, by Friday afternoon Ben was being felled by pain in his liver area and was having difficulty breathing. I spoke with Dr H (pain and symptom management) and she encouraged me to bring him to the hospital so they could figure it out. She was incredibly helpful … phoning ahead to make sure they took him right away, and then providing me with her personal cell phone so that I could keep her updated.
Long story short, they did a ct scan and somehow messed it up. They were looking for a blood clot which was unlikely since he is taking blood thinners, but you never know. The image did not turn out well but they didn’t believe there was a clot.
Dr H told me that Ben should be admitted to hospital until the source of the pain was determined, and she spoke directly with the ER doc and told him the same. He intended on admitting Ben, but Ben so badly did not want to stay in hospital that I told them I could manage at home and asked them to release him. So they did. Unbeknownst to me, Dr H told the ER Doc to expect Ben back this weekend, and she was right.
Fast forward to Saturday night. The pain literally brought Ben to his knees last night. So I called Dr H this morn and she told me to bring him back to hospital and have him admitted. Ben agreed, which tells you how much pain he is in.
As I write this he is being admitted. He has been sufficiently drugged and is sleeping semi peacefully in the ER. The ER doc checked his CT from Friday and let us know that there are metastasis in the liver and lungs along with fluid in the lungs. They assume that is causing the pain, but I believe another CT is being ordered. Hopefully they will do it correctly this time.
It is doubtful that Ben will be able to complete his radiation, because the pain causes him to feel like he is being stabbed and it causes him to move suddenly, which cannot happen in the CT or they will radiate the wrong spot.
I have emailed Dr K to ask him to please try to access the Nivolumab right away, despite not having coverage. Ben needs that drug. I don’t understand who has to prescribe it, but Barb has just told me that Dr K said he cannot. I don’t know why. I guess I will have to follow up on that tomorrow. But the bottom line is that we need that drug. Now. It is unreasonable at this point to think that Ben could fly to Toronto, so Nivolumab it will be and I don’t care what needs to be done to get it.