I am hoping for a quiet New Year's Eve tonight, though that may be optimistic...on Christmas night, at 10:30, the neighbors started shooting off major fireworks, high in the sky booming and sending a rain of something (sparks? ash?) on our house so that I thought someone was spraying a hose at the window next to where Manford was sleeping. After listening for some time, I went over in my pajamas and asked them to be quieter (there was a party going on, also), and got a rude reply, but they did get quieter...so we will see.
The kids are at the Quaker Summer Gathering in Ngarauwahia, just north of Hamilton. I went up yesterday to take Joseph to lunch for his birthday, and it is a really nice camp with lots of activities, and they seem to be having fun.
Manford had a subcutaneous pump installed on Monday, after some advocacy, which is what we call begging and cajoling, right? on my part. I kept asking "what is the downside? are there clinical risks? why NOT do it?" because he was having to take 20-something pills a day, with increasing difficulty using a straw, and I was afraid he would choke. On Friday, when I first asked this, the big nurse in charge (in the sky, who I have never met) said no, because he could still swallow. No one could or would tell me why not do it if it could make him more comfortable, as I learned it had for our friend who is in similar straits. Then on Monday the nurses came and actually listened to me when I said I was afraid he would choke, and they may be in trouble with the big nursie at home, but it was a holiday and they didn't have to ask her. I have since gathered that the drawbacks are resourcewise, since they now have to come every day to load the pump. I didn't know this, and no one would say. Anyway, it has been helpful, as he quickly seemed much more comfortable and settled, though he slept much of the first couple of days. He was a bit more up and down yesterday, but still better than before.
Sarah left on Tuesday, and I hope is home by now...it was really good to have her.
Happy New Year's Eve Eve, for those on the other side of the dateline...
Carrie
Friday, December 31, 2010
Sunday, December 26, 2010
Boxing Day
I feel we really should be doing something with boxes, and we have plenty of leftovers, but don't think the deserving poor would really appreciate our scraps, and we don't have servants...It would not be a bad idea at all to box up the leftover toys in the family room, but no one has the energy for that...
Whereas Manford slept nearly all day yesterday, and all through the night, today he has been more wakeful and eating constantly all afternoon...strawberries (unfortunately dwindling in the garden), soup, jello, ice cream, bread, Christmas cake (fruitcake), mochi, more soup...It is helpful to have Sarah to do some of the feeding, both of him and of the hungry children...
It is cool, cloudy, lazy day. Emily has put together the train Santa brought to go around the Christmas tree, and it is in the hallway now...Joseph has gone to a friend's house to play video games.
I hope your Christmas was merry.
Carrie
Whereas Manford slept nearly all day yesterday, and all through the night, today he has been more wakeful and eating constantly all afternoon...strawberries (unfortunately dwindling in the garden), soup, jello, ice cream, bread, Christmas cake (fruitcake), mochi, more soup...It is helpful to have Sarah to do some of the feeding, both of him and of the hungry children...
It is cool, cloudy, lazy day. Emily has put together the train Santa brought to go around the Christmas tree, and it is in the hallway now...Joseph has gone to a friend's house to play video games.
I hope your Christmas was merry.
Carrie
Saturday, December 25, 2010
Merry Christmas (eve)
It's Christmas morning here, though, and we've made it through the excitement. Manford slept solidly from about 7 last night, through 6:30 stocking madness and Santa presents, Charlie playing happily with her new toy. He woke up briefly to eat a croissant and juice and take his myriad of morning pills, and went back to sleep through the present opening, so he still has a small pile of treats for when he wakes up. He hasn't slept this long in a long time, if ever, but he seems peaceful, so we are happy.
Happy Christmas to all, and to all a good night...
Happy Christmas to all, and to all a good night...
Wednesday, December 22, 2010
Almost Christmas
Defying expectations, Manford is still here, and looks like he will make it to Christmas. He is unable to get out of the bed at all, but this has made things simpler, in some ways--no more precarious transfers to the wheelchair or recliner. He is on oxycontin now, because of various increasing pains which may be directly or indirectly related to the cancer, and it is making him a bit fuzzy on reality...we have got a palliative care nursing agency coming every other night or so, and during the day for a few hours, and this is really helpful.
Two weeks ago the hospice nurse was trying to talk me into putting him into a nursing home, but I looked at what was available and couldn't send him to that hot concrete cell (the best face I could put it on was a monastic cell, but I am not sure that is the most accurate). But it spurred me to get more help, and that has been godsend. And my sister Sarah arrived last week for about 10 days, and she is also a great help, especially with the kids.
It is very hard to tell how much longer now; Manford is still wanting to eat, though not as much as a couple of weeks ago, when he was spurred to ravenousness by the steroids. He has trouble, intermittently, drinking from a straw, and with various motor tasks like turning in bed. He is ready to be done with it, and keeps saying goodbye, but his body is not finished. Our friend from the hospice art group, Glenn, who also has a brain tumor, and lives about five blocks from here, is in about the same condition; they also have children, six and fifteen, also trying to make it through Christmas.
Two weeks ago the hospice nurse was trying to talk me into putting him into a nursing home, but I looked at what was available and couldn't send him to that hot concrete cell (the best face I could put it on was a monastic cell, but I am not sure that is the most accurate). But it spurred me to get more help, and that has been godsend. And my sister Sarah arrived last week for about 10 days, and she is also a great help, especially with the kids.
It is very hard to tell how much longer now; Manford is still wanting to eat, though not as much as a couple of weeks ago, when he was spurred to ravenousness by the steroids. He has trouble, intermittently, drinking from a straw, and with various motor tasks like turning in bed. He is ready to be done with it, and keeps saying goodbye, but his body is not finished. Our friend from the hospice art group, Glenn, who also has a brain tumor, and lives about five blocks from here, is in about the same condition; they also have children, six and fifteen, also trying to make it through Christmas.
Sunday, December 5, 2010
what I forgot to say
A couple of weeks ago, someone broke into our house and took our laptops--the computers themselves are no great loss, as they were getting quite decrepit, in fact were sitting out in the living room because I was going to back them up onto the new external hard drive we had just gotten because I was afraid either or both were going to expire, with all our pictures and music on them. But I didn't back them up. Let that be a lesson to you.
I have some pictures of Manford because I had started to make a powerpoint slide show with some of them, and saved it on a memory stick. But most of our pictures for the last four years are gone. If any of you have pictures from your visits here, or our visits there, and could send them to me (maybe on disks if there are more that a few), I would really appreciate it. And I will back them up.
I have some pictures of Manford because I had started to make a powerpoint slide show with some of them, and saved it on a memory stick. But most of our pictures for the last four years are gone. If any of you have pictures from your visits here, or our visits there, and could send them to me (maybe on disks if there are more that a few), I would really appreciate it. And I will back them up.
December already
We will decorate our tree today, though I can't believe Christmas will really come this year, and can't predict what it will be like. Just after Christmas is the annual weeklong Quaker Summer Gathering, which is to be held just a half hour north of here. Joseph and I have been on the organizing committee, though me just nominally the last six months. Joseph is representative of/to Young Friends; he can go on his own, supposedly, and bunks with the YF's this year for the first time. If I can't go, Emily will go with her local honorary grandmothers, Joy Rising and Mary Rose.
Joseph has started a volunteer job, three afternoons a week, helping sort, clean, and move things around at the Hospice Shops (second-hand stuff to support Hospice). He seemed happy with this after the first day, though it was hot, since he has chosen to work in the afternoons...they close down, like 3/4 of New Zealand, between December 21 and January 10.
Emily had her school "Panto" this week--this is apparently a British tradition--the Christmas Pantomime. As she has been rehearsing and talking about this over the last few months, I have been puzzling, becuase it clearly didn't seem to be what I would think of as a pantomime...she kept singing the songs, and talking about character's lines...it was finally clarified for me by a British friend at our Thanksgiving dinner. It is an audience participation kind of play, which traditionally includes lots of booing the villians and cheering the heroes, actors playing the opposite gender, songs, and apparently always one character who actually is a mime. Emily was a cat and a cheerleader in this one, which was a version of Dick Whittington, in which he comes to Southwell school...They did a good job. I tried to take a few pictures with my iphone but they did not come out well...Emily now just has 3 1/2 days left of school.
Manford has been struggling with a urinary tract infection, and more weakness; he is tired of it all and discouraged. He did get up and join us for Thanksgiving for a few minutes, and talked with his sister Joan on the phone well that day. He appreciates your thoughts and prayers.
Joseph has started a volunteer job, three afternoons a week, helping sort, clean, and move things around at the Hospice Shops (second-hand stuff to support Hospice). He seemed happy with this after the first day, though it was hot, since he has chosen to work in the afternoons...they close down, like 3/4 of New Zealand, between December 21 and January 10.
Emily had her school "Panto" this week--this is apparently a British tradition--the Christmas Pantomime. As she has been rehearsing and talking about this over the last few months, I have been puzzling, becuase it clearly didn't seem to be what I would think of as a pantomime...she kept singing the songs, and talking about character's lines...it was finally clarified for me by a British friend at our Thanksgiving dinner. It is an audience participation kind of play, which traditionally includes lots of booing the villians and cheering the heroes, actors playing the opposite gender, songs, and apparently always one character who actually is a mime. Emily was a cat and a cheerleader in this one, which was a version of Dick Whittington, in which he comes to Southwell school...They did a good job. I tried to take a few pictures with my iphone but they did not come out well...Emily now just has 3 1/2 days left of school.
Manford has been struggling with a urinary tract infection, and more weakness; he is tired of it all and discouraged. He did get up and join us for Thanksgiving for a few minutes, and talked with his sister Joan on the phone well that day. He appreciates your thoughts and prayers.
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