Mathew is in Palliative care at the hospital.
It isn’t smooth going there either.
The ambulance trip ended up going well for Mathew. I was permitted to sit in the back with Mathew and that did everything to allay his fears!! The paramedics were sympathetic, kind men who were gentle and explained everything to Mathew. The one in the back with us kept up a conversation about music, so Mathew was in his happy place!
At the hospital Mathew was taken straight up to his room on the Palliative care floor and friendly faces were waiting for us. Mathew’s pain pump was switched to the hospital version (same thing just belongs to the hospital and not Extramural!) and shortly after 5 pm he was switched to Dilaudid.
The starting dose ended up being too low for Mathew and he suffered more than usual through the night, even with the break-through doses. As we were both up all night (although he told his Dad I snoozed pretty good) my mind is a little foggy about specific times…. Around 6 am the doctor switched up the dose and after that Mathew could rest better.
He then started to feel just dreadful and nauseous. Since then he is receiving a lot of anti-nausea medication and is pretty loopy at the moment! He is still getting break-through but he is sleeping today. His whole chest heaves in and out which makes it hard to watch. You can tell breathing is no easy feat for him anymore.
The Radiation Oncologist came to see Mathew this morning. She looked him over then we spoke out in the hallway. In the end we agreed Mathew will receive radiation to his right hip and the top of his right femur. I don’t know how big or small those tumours are; I’ll ask in the next couple of days. Mathew will go down to Radiation tomorrow, for his skin to be marked where the beams will be concentrated. When there is an opening, he will go down again to receive one big dose to those two areas. There is a concern that the cancer eating into the weight-bearing bones can cause fractures. Well, shoot. Hadn’t worried about that until now! The idea of the radiation is to slow progression of the cancer and the mineralization will help strengthen the area. Or, I could have heard everything wrong in my sleep-deprived state and am feeding you hogwash. This is how I remember it though!
There will be no radiation to either area along Mathew’s spine. Either the lower area or the T11-T12 area. Those lesions/spots are close to the spinal cord; in the lining surrounding it and any radiation there would have to be carefully managed over 8 small doses. Mathew won’t do anything beyond one dose. The one area, at the L3, was already blasted with as much radiation as could safely be given him so anything else there is quite a risk.
The possible side effects of the radiation Mathew will receive is possible sunburn look to the skin….and pain. Apparently 4 out of 10 people who get this radiation develop worse pain for 3 or 4 days following treatment before it goes away. Mathew has NOT been told of that potential effect and neither will he be advised ever!!
The radiation, combined with potential side effects, plus managing his complicated pain supports Mathew’s stay at the hospital to a possible week or more… *sigh*…. It is quiet there, he has his own room and the chairs fold out into cots and the staff is very friendly and helpful. Still. It isn’t home.
John and I are trading off every day unless something big comes up at which time we will both stay at the hospital. It is imperative for us to take turns to properly rest, undisturbed at night.
I am updating frequently on Facebook but on here only when I am home.