Mathew did not fall asleep until an hour or two ago.

This, in spite of him desperately wanting to. Also in spite of me giving him every medication he could have and by that I mean a LOT.

Trouble and pain were compounded when I washed his hair yesterday. He has a presumed cyst on the side of his head. It appeared months ago and grew to the size of a tooney ($2 coin we Canadians have) before it elongated and ruptured a couple of weeks ago. The day after it seemed to rupture, Mathew’s eyebrow ~ on the same side of his head ~ swelled up and then his eyelids and the area below that. It only lasted 2 days and then the swelling vanished. I asked his nurse if it was possible the fluid from the cyst (located behind his ear) could travel that far to drain and she checked with the medical staff at Extramural. There have been a few other cases that followed the same pattern.

I did notice though that the initial cyst/swelling was still there and over the last couple of weeks it seemed to be growing again. Forward to yesterday when I manhandled Mathew’s head to wash his hair… and I’ll bet I handled the cyst although I tried to be as gentle as possible.

That area of Mathew’s head hurt last night in the same pattern as it did when it last “leaked”. He could not even stand to have that part of his head touch his pillow through the night and for a lot of today. I sure hope it is draining again and will give him relief at any time. We are watching that side of his face for any swelling again too.

That pain, combined with increased pain through his chest, back and under his arms, meant he just couldn’t rest. I gave him plenty of meds through the night to try to minimize his discomfort but neither of us slept well. He worries more with increased pain and that doesn’t help either.

This morning he was in quite a state with everything hurting. So I doubled his morphine dose to 60 mg; the amount the doctor had previously determined we could go to if his pain gets too much for him. That meant watching him, for any signs of reduced breathing. On top of that he received Ativan, gravel and a sleeping pill as he was desperate for rest.

The high morphine amount gave him relief from everything but the cyst area; it stung throughout the day. You could tell he was definitely drugged but although he moved slower, he functioned normally and could enjoy his iPad. I, on the other hand, watched him like a hawk, in case of overdose. It was good to see him relax somewhat, although walking was an adventure. He had his personal assistant (me) accompany him whenever he needed to get up because he was a bit unsteady moving about.

Today was a much anticipated day for him – it was the launch of the Nintendo Switch; a new and portable gaming console. It is an early birthday present he had eagerly anticipated since it was pre-ordered some time ago. Mathew was alert enough to open the box and look at everything, but not well enough to have it connected to his tv or to sit in his chair to play it. He held it as the hand held device and put in the game he got with it. He fiddled with it for a few minutes before setting it aside.

That alone speaks volumes about how Mathew is feeling. He has a one track mind when he gets his heart set on something and has to wait for it. It is worse than Christmas Day fifty times over and there is nothing to do but to hope there are no delays in him receiving said item.

John will be camping on the cot in Mathew’s room tonight while I catch up on some sleep. Sleeping on that noisy thing is not terribly comfortable but it beats the reclining chair or the floor!