Update from the Blogger / Player

January 22, 2016

Update from the Blogger / Player

Fourth Wall Break - 1 — From the player:

In my last update, I said I’d hope to make at least one story post a week. That hasn’t happened.

Since Joe returned from the aborted drug trial in December, we had a lovely Christmas with the family, followed by a horrific week in the hospital during which he ran scarily high fevers and was pumped full of antibiotics in an attempt to flush his system from all possible infection before beginning a course of palliative chemotherapy meant to ease his symptoms.

At the end of the hospital stay, we had a meeting with the Haemotology nurse/admin who’s assigned to Joe and one of the doctors on the team.

Basically, we were told that Joe needs to get his affairs in order, pronto. When we told Orla (the nurse/admin) that the top of his bucket list was a trip to Sligo, she shuddered visibly and told us this would be a risky trip for him, that he should arrange it within the next two weeks.

So that we did. We made plans to leave for Sligo on the 15th of January, a Friday. On Thursday, he went in for routine blood tests running a high fever and they decided to give him a blood transfusion. All day his temperature had been dropping, but it suddenly spiked during the transfusion, and hospital policy when this happens is to stop the transfusion and test for an allergic reaction.

Orla and the palliative care team fought to keep him out of hospital, but we had to delay the trip for a day as they wanted him the next day to finish the blood transfusion.

I’d like to say the trip to Sligo was magical, and on many levels it was. It was great to see many wonderful cousins and two of Joe’s siblings and some of their children. Staying with cousins Noel and Margaret is always a treat, and Sligo Town and environs are so beautiful even in a bare, windy January. I made pilgrimage to Drumcliffe and saw Yeats’ grave again, found a beautiful harp shawl pin, and we made a couple of trips to Strandhill, which is such a lovely place to walk.

The trip was a real eye-opener for me, however. Joe was really sick the whole time with a few high points where he was able to interact with people. He was not really able to get around much without the wheelchair we rented in advance of Kings Occupational Therapy bringing round a permanent one (that was meant to happen today but didn’t).

Since we’ve been home, his level of sickness has been about the same as it was in Sligo. We have a rescheduled appointment for another round of palliative chemotherapy on Monday and we are hoping it will do a bit to relieve some of his symptoms.

But the truth is, for the first time I’m learning what it’s like to live day to day with a dying person. He’s frustrated, I’m frustrated, we’re both on edge, and there is very little he can do, even little normal things, without my help. We are getting to the point where he’ll need much more care than I can give him, so from next week, the palliative care team have arranged to have someone from the regional nursing team come round as often as three times a day to help with things like assessing his condition, getting food in him and keeping it down, and controlling his increasingly high fevers.

At this point, my pie-in-the-sky dream will be for him to be able to come to Germany with me and celebrate my 50th birthday with the rest of the wonderful DFDF community, but weeks like the past couple make that seem like a longshot. I’m even a little worried about the upcoming UK filk convention, but I have too much invested in that event to miss it at this late date.

So, remember how I said I couldn’t promise anything? I guess I meant it.

Faerie Queen Gwyneth’s life continues, I’m sure of it, I just can’t reach it right now. It’s something I can watch through a window, not something I can connect with.

So I’ll do something I don’t think I’ve ever done here. Some of you know I write songs from time to time.

Here are the lyrics to my latest one. It’s called “Fade Away”.

Fade Away