Saturday, September 30, 2006
Yesterday was Penny’s 49th birthday.
Today I can start telling her she is almost 50.
Thanks to everyone for the birthday wishes, and your messages.
I just remembered today that Penny had been using a yahoo account for her email and logged in to peek. There were almost 300 messages in her inbox since she last logged in there. I have only been checking her Telus account for her. And I said I was reading all her mail to her…apparently not.
Penny is looking a little better since Wednesday. Her pallor is noticeably improved. She is still having a lot of trouble with the nausea, and it is worse today because they changed her medication for it but she won’t let them put another needle in just yet. They actually want to put 3 more in, to make a total of 5, plus the IV in her hand for a total of six. One for each medication she is currently taking. Sounds like a bit much, but I suppose it beats getting a needle every time you have to take meds. Had a bad night with the pain again, and is struggling a little today. They switched her back to morphine last night, and every time they switch the meds it takes a while to adjust the dose just right to keep her comfy. She is holding out to see the Doctor before she gets poked again.
Noon
Doctor was just in. Going to try and give more of her meds through IV for now, but will eventually have to put the other needles in. A temporary reprieve.
Took her for a spin around the fifth floor in a wheelchair Thursday night, and got her into the shower for a shampoo as well. And after doing all that nice stuff for her she kicked me out of her room, sent me home for a nap. Friday night she was up for a visit with Peter and Tanya, and Mom and Dad are here for hours every day to visit. There are maybe two hours out of 24 in intervals that Penny is up for anything. She sleeps, or tries to, for the other 22. She mentioned this morning how nice it would be to have just a little bit more energy.
Penny called me at home last night to say the palliative nurse had been for a visit. She said we should know by Monday night or Tuesday about being admitted to hospice. I will try to read her birthday greetings to her when she is up for it.
Michael
Saturday, September 30, 2006
Thursday, September 28, 2006
Yesterday was a good day.
Thursday, September 28, 2006
Tuesday night was uneventful, and peaceful, and we caught up on some rest. Mom and Dad came again in the morning, Wednesday, and stayed until Penny got back to the room around 5. It took about 4 hours to get it all done
The procedure was a success, but it was a long difficult afternoon for her.
When Pen woke up around 11PM tonight for her four hour med nurses visit, I asked her if she wanted to add anything to the blog today. She said no, just to thank everyone again, and that tomorrow when she felt better she was going to type herself and tell everybody what the experience felt like.
They had to guide a needle through her abdomen, liver, bile ducts and into the intestine, and then wheel her down to another room where they did the ERCP again, found the wire inside and used it to guide the stent into place to open up the bile ducts. They don’t put you out for this thing. You need to be semi conscious. They used a different term like comatose consciousness or something, but the point is you are aware for this little adventure. They don’t want you to hurt too bad, but they need you to be able to move around a little during this to help them guide their instruments around in there. Penny’s head was dripping with sweat when she got out of there. I got in to have a peek at the picture on the monitor with Penny just when they finished up. The image of the stint in place in the duct, along with surrounding organs, bones, etc. was crystal clear. That is amazing stuff they do in there. Penny was awake and talking as soon as it was done, and the first thing she said was, ‘it was awful’.
She seems to have tolerated it all very well though, and recovered nicely so far.
She slept for a bit when she got back to the room. Then she got up and dressed in her own nightie and relaxed in the reclining chair for a visit with Pete and Julie, and enjoyed the sunset view at the same time.
It is almost 2 in the morning now, and Pen has only had 1 BT med all night, and that was hours ago, so it looks like another peaceful night. Huge thank you very much to all the staff here again for your efforts and kindness yesterday. Everyday.
Yesterday was a good day.
Michael
Tuesday night was uneventful, and peaceful, and we caught up on some rest. Mom and Dad came again in the morning, Wednesday, and stayed until Penny got back to the room around 5. It took about 4 hours to get it all done
The procedure was a success, but it was a long difficult afternoon for her.
When Pen woke up around 11PM tonight for her four hour med nurses visit, I asked her if she wanted to add anything to the blog today. She said no, just to thank everyone again, and that tomorrow when she felt better she was going to type herself and tell everybody what the experience felt like.
They had to guide a needle through her abdomen, liver, bile ducts and into the intestine, and then wheel her down to another room where they did the ERCP again, found the wire inside and used it to guide the stent into place to open up the bile ducts. They don’t put you out for this thing. You need to be semi conscious. They used a different term like comatose consciousness or something, but the point is you are aware for this little adventure. They don’t want you to hurt too bad, but they need you to be able to move around a little during this to help them guide their instruments around in there. Penny’s head was dripping with sweat when she got out of there. I got in to have a peek at the picture on the monitor with Penny just when they finished up. The image of the stint in place in the duct, along with surrounding organs, bones, etc. was crystal clear. That is amazing stuff they do in there. Penny was awake and talking as soon as it was done, and the first thing she said was, ‘it was awful’.
She seems to have tolerated it all very well though, and recovered nicely so far.
She slept for a bit when she got back to the room. Then she got up and dressed in her own nightie and relaxed in the reclining chair for a visit with Pete and Julie, and enjoyed the sunset view at the same time.
It is almost 2 in the morning now, and Pen has only had 1 BT med all night, and that was hours ago, so it looks like another peaceful night. Huge thank you very much to all the staff here again for your efforts and kindness yesterday. Everyday.
Yesterday was a good day.
Michael
Tuesday, September 26, 2006
Almost Wednesday,,,,,,,again.
Sunday, September 24, 2006
It is noon, Sunday, and Penny is sleeping comfortably.
She had a peaceful night again, but is very tired today. I mentioned there were no visitors that I knew of that were coming today except Tanya, and she said ‘that’s good, I just want to sleep.’ She has no energy at all. The doctor mentioned that this morning too. Said they are pretty good at pain management, but there is not much they can do about the energy level. Pam came and spent the afternoon with Pen.
11:00 PM Sunday.
It was not a very good night. When I came back to the hospital a little after 8 to spend the night again I found Penny sitting up in bed, crying and in pain, her IV line was tangled in one side of the bed and she was nauseous and throwing up. They were 3 people short staffed yesterday and got behind on her meds a little bit. Got her untangled and the nurse came in shortly afterward with the extra pain meds. Ten minutes later she was comfy again, hair brushed and all tucked in, drifting off to sleep.
10:00 AM Monday
We didn’t get a lot of sleep last night. At 2 this morning they had to change one of the injection sites. Only took ten minutes but Penny finds it painful. She has been complaining for a long time, months, about how much her skin hurts all over, and when they tear that special tape off that holds the butterfly needle in she struggles with it. Well, they don’t tear it off, but rather peel it back slowly. Takes at least 5 minutes to get it off and she grimaces for every second of it. She has 3 or 4 of those needles in her all the time in different places for the different drugs they inject. Plus the IV in her hand. Poor girl must feel a little like a pincushion. And she was worried about the procedure that is being done today so that didn’t help either.
I read a few emails to Penny. Mom read some letters to her this morning too. Helped take her mind off things a little. She seldom opens her eyes but she does smile often when read to She has been comfortable and resting/sleeping since about 4 AM. I am glad they are running a little late this morning. Give her a chance to rest up a bit for it.
So, almost time to go downstairs for the ERCP.
10:00 PM Monday
They took Penny down for the ERCP about 1 and she was back in her room by 3. It didn’t work out today. Constricted space caused by one or more of the tumors, and partly because Penny has some tremors from the meds meant that they will have to try a different method. They have that booked for Wednesday.
Mom and Dad spent most of the day here, and Tanya was here this evening till I got back. Penny had a sleepy afternoon.
8:00 AM Tuesday
Had a pretty good night. Little confusion over wrong meds at 3 in the morning and they had to change the IV to her right hand but pretty comfortable otherwise. They woke us up at midnight saying our daughter was just on the phone complaining that her mom had a bad rash on her ass and that she wanted it fixed right now. Wrong room, but they almost had us convinced it was Tanya even though Penny has no rash problem anywhere. We did have a chuckle about that one.
Penny’s blood pressure was very low yesterday and her energy levels have dropped to pretty much zero. Her skin hurts and she finds even the loose hospital gowns constraining and irritating, so she drapes it instead of wearing it. Her oral fluid intake consists of a piece of ice no bigger than the size of a pea every few hours or so. They also started her on oxygen yesterday. They have the worst of the pain under control, but with the extra BT meds last night, her spasms have returned. They are almost as bad this morning as I have ever seen them. Her breathing pattern is changing when she is sleeping. And the jaundice is remarkably noticeable.
8:00 PM Tuesday
Almost Wednesday again.
It was a week ago I started doing this for Pen. The night she was admitted to hospital.
Feels like a month, at least. Lots of ups and downs during the day, and night. For everyone.
Mom and Dad spent the afternoon with her. Paula and Dennis popped in for a quick visit this evening.
Hope she has a good night. They are trying again tomorrow to insert the stent, and it is a more invasive procedure than the first one. She gave up wearing the gown altogether this afternoon. Having large fluctuations in her blood pressure, and the tests they do for oxygen are showing a steady decline.
Penny woke up for a moment, so I opened the blinds on the window beside her bed to give her a view of the sunset. Her room is on the 5th floor facing west, and it was especially pretty tonight. I asked her if she would like to have any input into the blog today.
She did. She said “ to say thank you to everyone for keeping in touch and for caring.” And then she went back to sleep.
Michael
It is noon, Sunday, and Penny is sleeping comfortably.
She had a peaceful night again, but is very tired today. I mentioned there were no visitors that I knew of that were coming today except Tanya, and she said ‘that’s good, I just want to sleep.’ She has no energy at all. The doctor mentioned that this morning too. Said they are pretty good at pain management, but there is not much they can do about the energy level. Pam came and spent the afternoon with Pen.
11:00 PM Sunday.
It was not a very good night. When I came back to the hospital a little after 8 to spend the night again I found Penny sitting up in bed, crying and in pain, her IV line was tangled in one side of the bed and she was nauseous and throwing up. They were 3 people short staffed yesterday and got behind on her meds a little bit. Got her untangled and the nurse came in shortly afterward with the extra pain meds. Ten minutes later she was comfy again, hair brushed and all tucked in, drifting off to sleep.
10:00 AM Monday
We didn’t get a lot of sleep last night. At 2 this morning they had to change one of the injection sites. Only took ten minutes but Penny finds it painful. She has been complaining for a long time, months, about how much her skin hurts all over, and when they tear that special tape off that holds the butterfly needle in she struggles with it. Well, they don’t tear it off, but rather peel it back slowly. Takes at least 5 minutes to get it off and she grimaces for every second of it. She has 3 or 4 of those needles in her all the time in different places for the different drugs they inject. Plus the IV in her hand. Poor girl must feel a little like a pincushion. And she was worried about the procedure that is being done today so that didn’t help either.
I read a few emails to Penny. Mom read some letters to her this morning too. Helped take her mind off things a little. She seldom opens her eyes but she does smile often when read to She has been comfortable and resting/sleeping since about 4 AM. I am glad they are running a little late this morning. Give her a chance to rest up a bit for it.
So, almost time to go downstairs for the ERCP.
10:00 PM Monday
They took Penny down for the ERCP about 1 and she was back in her room by 3. It didn’t work out today. Constricted space caused by one or more of the tumors, and partly because Penny has some tremors from the meds meant that they will have to try a different method. They have that booked for Wednesday.
Mom and Dad spent most of the day here, and Tanya was here this evening till I got back. Penny had a sleepy afternoon.
8:00 AM Tuesday
Had a pretty good night. Little confusion over wrong meds at 3 in the morning and they had to change the IV to her right hand but pretty comfortable otherwise. They woke us up at midnight saying our daughter was just on the phone complaining that her mom had a bad rash on her ass and that she wanted it fixed right now. Wrong room, but they almost had us convinced it was Tanya even though Penny has no rash problem anywhere. We did have a chuckle about that one.
Penny’s blood pressure was very low yesterday and her energy levels have dropped to pretty much zero. Her skin hurts and she finds even the loose hospital gowns constraining and irritating, so she drapes it instead of wearing it. Her oral fluid intake consists of a piece of ice no bigger than the size of a pea every few hours or so. They also started her on oxygen yesterday. They have the worst of the pain under control, but with the extra BT meds last night, her spasms have returned. They are almost as bad this morning as I have ever seen them. Her breathing pattern is changing when she is sleeping. And the jaundice is remarkably noticeable.
8:00 PM Tuesday
Almost Wednesday again.
It was a week ago I started doing this for Pen. The night she was admitted to hospital.
Feels like a month, at least. Lots of ups and downs during the day, and night. For everyone.
Mom and Dad spent the afternoon with her. Paula and Dennis popped in for a quick visit this evening.
Hope she has a good night. They are trying again tomorrow to insert the stent, and it is a more invasive procedure than the first one. She gave up wearing the gown altogether this afternoon. Having large fluctuations in her blood pressure, and the tests they do for oxygen are showing a steady decline.
Penny woke up for a moment, so I opened the blinds on the window beside her bed to give her a view of the sunset. Her room is on the 5th floor facing west, and it was especially pretty tonight. I asked her if she would like to have any input into the blog today.
She did. She said “ to say thank you to everyone for keeping in touch and for caring.” And then she went back to sleep.
Michael
Saturday, September 23, 2006
Almost a year older.
Penny has a birthday coming up next week.
She had a great visit with her sisters and Tanya last night, up and chatting for an hour.
When I arrived at the hospital this morning she smiled and said she had a good night. Slept well.
Must have, because she threw her glasses on and grabbed the laptop and did a little reading for about ten minutes. Had a bit to eat for lunch today too. The most I have seen her eat in two weeks.
Her jaundiced pallor has improved, and we had a pretty good visit this morning.
She looked better than she has for several days. She was up and happy to see Mom and Dad and Trish arrive for the afternoon. She had half a dozen more visitors this evening.
I don’t mind writing this so much today. This is all good stuff.
The nausea and pain control are still a work in progress, and cause her some distress, but it is much better. The frequency of the attacks has diminished and she doesn’t have to wait long for relief. They increased the pain meds a little last night, and seem to be doing a really good job keeping the pain under control.
The muscle spasms she had been having a thousand times a night have also almost stopped. Some of them were quite severe and it is a big relief to see them evolve into just a little twitch now and then. The spasms were a result of becoming a little toxic from all the drugs, and not getting enough fluids.
It is eight in the morning now, Saturday, and she has been sleeping peacefully since eleven last night. Very nice to see after all the tough nights that she has been having lately. The day shift nurse just came in to check BP and give meds and Penny said her pain was zero. That was so good to hear. I have not heard a zero for months. The staff here is doing an awesome job of keeping her comfortable.
The doctor was just in and confirmed the ERCP will be done on Monday. Even shifted the schedule a little bit so Penny can get this done ASAP.
At this rate, Penny might soon be typing her own blog again. I’m hoping.
11:30 AM Saturday, September 23, 2006
Tanya, Kylie and Neressa were just here for a visit. Penny had a good morning and is just settling in for her noonish siesta. She read this before I posted it and drifted off to sleep.
Michael
She had a great visit with her sisters and Tanya last night, up and chatting for an hour.
When I arrived at the hospital this morning she smiled and said she had a good night. Slept well.
Must have, because she threw her glasses on and grabbed the laptop and did a little reading for about ten minutes. Had a bit to eat for lunch today too. The most I have seen her eat in two weeks.
Her jaundiced pallor has improved, and we had a pretty good visit this morning.
She looked better than she has for several days. She was up and happy to see Mom and Dad and Trish arrive for the afternoon. She had half a dozen more visitors this evening.
I don’t mind writing this so much today. This is all good stuff.
The nausea and pain control are still a work in progress, and cause her some distress, but it is much better. The frequency of the attacks has diminished and she doesn’t have to wait long for relief. They increased the pain meds a little last night, and seem to be doing a really good job keeping the pain under control.
The muscle spasms she had been having a thousand times a night have also almost stopped. Some of them were quite severe and it is a big relief to see them evolve into just a little twitch now and then. The spasms were a result of becoming a little toxic from all the drugs, and not getting enough fluids.
It is eight in the morning now, Saturday, and she has been sleeping peacefully since eleven last night. Very nice to see after all the tough nights that she has been having lately. The day shift nurse just came in to check BP and give meds and Penny said her pain was zero. That was so good to hear. I have not heard a zero for months. The staff here is doing an awesome job of keeping her comfortable.
The doctor was just in and confirmed the ERCP will be done on Monday. Even shifted the schedule a little bit so Penny can get this done ASAP.
At this rate, Penny might soon be typing her own blog again. I’m hoping.
11:30 AM Saturday, September 23, 2006
Tanya, Kylie and Neressa were just here for a visit. Penny had a good morning and is just settling in for her noonish siesta. She read this before I posted it and drifted off to sleep.
Michael
Thursday, September 21, 2006
Almost the weekend
Thursday, September 21, 2006
Almost the weekend.
Our plans to spend a quiet week at home before Penny went to hospice have gone awry.
She is however, much more comfortable in hospital. They give a lot of her medications through the IV now instead of orally, which was getting difficult. Quite often at home she would throw up soon after taking the meds, and it was tough deciding whether to give her more or not. Getting her fluids hooked up through IV has also helped a lot. It works much faster than the setup we had at home. Even the pharmacist there comes to see her personally and checks to make sure all her medications are working well for her. She is as comfortable as can be and is surrounded by caring people. The hospital staff couldn’t be any nicer and Penny has a family member or two or three with her around the clock.
Penny received the results of yesterday’s tests this morning. There are tumors on the liver and pancreas. A specialist is going to review the tests and decide whether or not to attempt an ERCP and insert a stent.
It may make things more comfortable for her.
Thank you for all the kind messages.
I am sorry I can’t read them all to Penny anymore because she doesn’t have the energy to listen for very long. We only chat for a few minutes during a day. I do try to tell her who wrote, but I keep it short and simple and tell her they all say the same thing.
We love you Penny.
Michael
Almost the weekend.
Our plans to spend a quiet week at home before Penny went to hospice have gone awry.
She is however, much more comfortable in hospital. They give a lot of her medications through the IV now instead of orally, which was getting difficult. Quite often at home she would throw up soon after taking the meds, and it was tough deciding whether to give her more or not. Getting her fluids hooked up through IV has also helped a lot. It works much faster than the setup we had at home. Even the pharmacist there comes to see her personally and checks to make sure all her medications are working well for her. She is as comfortable as can be and is surrounded by caring people. The hospital staff couldn’t be any nicer and Penny has a family member or two or three with her around the clock.
Penny received the results of yesterday’s tests this morning. There are tumors on the liver and pancreas. A specialist is going to review the tests and decide whether or not to attempt an ERCP and insert a stent.
It may make things more comfortable for her.
Thank you for all the kind messages.
I am sorry I can’t read them all to Penny anymore because she doesn’t have the energy to listen for very long. We only chat for a few minutes during a day. I do try to tell her who wrote, but I keep it short and simple and tell her they all say the same thing.
We love you Penny.
Michael
Tuesday, September 19, 2006
Almost…..Wednesday September 19, 2006
Penny got settled in at the hospital tonight.
Another little communications problem with our health care providers but the people at the hospital have been very good about it and I am sure she will be as comfortable as can be for the rest of the night.
The paperwork will catch up, and it sounds like they know what’s going on.
Pen’s sister Paula came over to keep her company and let me get home for a few winks before I come back in the morning. And Mom and Dad came to check up on them both.
Feels like a lot of things being home alone though. Kinda hard to sleep. The last time we spent a night apart was last year when she picked up an infection during her down days on chemotherapy and got stuck in isolation at the same hospital she is at now. Had to cancel our vacation south. Got to go later though and the upside is the hospital had her on file. Made things easier tonight.
I have typed the last few posts for Pen. Since Trish last did. I read them to her before I posted them to be sure they were ok. I felt a little odd doing it at first for a number of reasons. Firstly, because Pen didn’t have the strength to do it anymore. That hurt. A lot.
The second reason is that I have never read her blog. I will, but I haven’t yet.
This one is just from me.
I read the first few, and stopped for a number of reasons. Some are personal, some were obvious, or so I thought. I live here, I don’t need to read the blog to know what is going on. People I work with, or friends who have told me where and when I am going before I knew frequently confronted me. It was in the blog.
They knew things about me I didn’t know.
I guess the moral of that story is that living here doesn’t necessarily mean you know what’s going on around here.
I do know for sure though that Penny is in good hands tonight. I hope she gets some rest.
Michael
Another little communications problem with our health care providers but the people at the hospital have been very good about it and I am sure she will be as comfortable as can be for the rest of the night.
The paperwork will catch up, and it sounds like they know what’s going on.
Pen’s sister Paula came over to keep her company and let me get home for a few winks before I come back in the morning. And Mom and Dad came to check up on them both.
Feels like a lot of things being home alone though. Kinda hard to sleep. The last time we spent a night apart was last year when she picked up an infection during her down days on chemotherapy and got stuck in isolation at the same hospital she is at now. Had to cancel our vacation south. Got to go later though and the upside is the hospital had her on file. Made things easier tonight.
I have typed the last few posts for Pen. Since Trish last did. I read them to her before I posted them to be sure they were ok. I felt a little odd doing it at first for a number of reasons. Firstly, because Pen didn’t have the strength to do it anymore. That hurt. A lot.
The second reason is that I have never read her blog. I will, but I haven’t yet.
This one is just from me.
I read the first few, and stopped for a number of reasons. Some are personal, some were obvious, or so I thought. I live here, I don’t need to read the blog to know what is going on. People I work with, or friends who have told me where and when I am going before I knew frequently confronted me. It was in the blog.
They knew things about me I didn’t know.
I guess the moral of that story is that living here doesn’t necessarily mean you know what’s going on around here.
I do know for sure though that Penny is in good hands tonight. I hope she gets some rest.
Michael
Tuesday, September 19, 2006
Last night was very difficult. Again. Getting to be a bad habit.
Sleep or doze or lie quietly all day, little bit of energy to visit in the afternoons, and then later in the evenings it becomes more difficult to control the pain. The nausea, vomiting, and diarrhea didn’t help much either. It has been almost a week since I have had a bite of anything that resembles solid food. It takes me all day to eat a Popsicle, one bite at a time.
The Doctor came to do the assessment today and said that I can’t go to hospice at the moment because they consider my condition unstable because of the liver. So. I am being admitted this evening at hospital to intensive care until they can run a ct scan and do some more blood work to find out what the problem is.
Treatment options vary depending on what they find out, and then we will know where we are going from there.
Last night was very difficult. Again. Getting to be a bad habit.
Sleep or doze or lie quietly all day, little bit of energy to visit in the afternoons, and then later in the evenings it becomes more difficult to control the pain. The nausea, vomiting, and diarrhea didn’t help much either. It has been almost a week since I have had a bite of anything that resembles solid food. It takes me all day to eat a Popsicle, one bite at a time.
The Doctor came to do the assessment today and said that I can’t go to hospice at the moment because they consider my condition unstable because of the liver. So. I am being admitted this evening at hospital to intensive care until they can run a ct scan and do some more blood work to find out what the problem is.
Treatment options vary depending on what they find out, and then we will know where we are going from there.
Monday, September 18, 2006
Monday, September 18, 2006
Had a nice visit today with Mom and Dad, Tanya and the girls. Jesse came with them today too.
The home care nurse was also here and gave us the results of the blood tests. It confirmed what we already knew about the liver involvement. It was not a surprise. My jaundice has gotten noticeably worse in the past week, with my eyes and skin turning yellow. The nurse also confirmed that my family physician has registered me with regional palliative care, so I should be hearing from them tomorrow about hospice.
Had a nice visit today with Mom and Dad, Tanya and the girls. Jesse came with them today too.
The home care nurse was also here and gave us the results of the blood tests. It confirmed what we already knew about the liver involvement. It was not a surprise. My jaundice has gotten noticeably worse in the past week, with my eyes and skin turning yellow. The nurse also confirmed that my family physician has registered me with regional palliative care, so I should be hearing from them tomorrow about hospice.
Sunday September 17, 2006
Michael is staying home with me this week, and is going to type for me so I can catch up a little. I am very happy he is home because I have missed him so much when he has been gone to work.
I have lost more time in the past few days. It was a bit of a shock to realize this was Sunday already. Understandable though too because it has been a difficult weekend. I had my first ambulance ride just after midnight on Friday. Spent the wee hours in the hospital again for pain control and Michael got me home at about 5:30 Saturday morning.
It has become a daily struggle from hour to hour to get through the pain. Never thought I would say that I would be looking forward to going into hospice. I keep thinking that I will be better there because the pain will be more manageable, that I will be better able to enjoy the time I spend with people visiting. All I can focus on right now is the pain. Michael does not want me to go to hospice and would prefer I stay home with him but feels helpless when the pain gets out of control. His only option when it get bad is to call the 911 operator to have EMT’s come give me a shot of morphine. Then they are required by law to transport me to hospital, and as soon as the hospital has my pain under control they discharge me and Michael has to get me home again in the car, which is very uncomfortable now. At least in hospice, pain relief is just a push of the button away and I don’t have to go on any excursions. Home is better, but hospice has better drugs. We don’t really have a choice.
Tanya brought me a gift today. It was a book of pictures of her at different times in her life that meant a great deal to her. She wanted me to know how much of an inspiration I have been for her. I am glad we had the time together to snuggle in bed today.
Peter and Julie stopped by too, but by the time they arrived the pain had taken over again and it was too difficult to talk. Hope we have a better visit next time they come.
Tomorrow, Mom and Dad are coming for a few hours for a visit.
Michael is reading all my emails to me and I enjoy hearing about what everyone is up to.
Thank you all for your kind thoughts and messages.
Penny
I have lost more time in the past few days. It was a bit of a shock to realize this was Sunday already. Understandable though too because it has been a difficult weekend. I had my first ambulance ride just after midnight on Friday. Spent the wee hours in the hospital again for pain control and Michael got me home at about 5:30 Saturday morning.
It has become a daily struggle from hour to hour to get through the pain. Never thought I would say that I would be looking forward to going into hospice. I keep thinking that I will be better there because the pain will be more manageable, that I will be better able to enjoy the time I spend with people visiting. All I can focus on right now is the pain. Michael does not want me to go to hospice and would prefer I stay home with him but feels helpless when the pain gets out of control. His only option when it get bad is to call the 911 operator to have EMT’s come give me a shot of morphine. Then they are required by law to transport me to hospital, and as soon as the hospital has my pain under control they discharge me and Michael has to get me home again in the car, which is very uncomfortable now. At least in hospice, pain relief is just a push of the button away and I don’t have to go on any excursions. Home is better, but hospice has better drugs. We don’t really have a choice.
Tanya brought me a gift today. It was a book of pictures of her at different times in her life that meant a great deal to her. She wanted me to know how much of an inspiration I have been for her. I am glad we had the time together to snuggle in bed today.
Peter and Julie stopped by too, but by the time they arrived the pain had taken over again and it was too difficult to talk. Hope we have a better visit next time they come.
Tomorrow, Mom and Dad are coming for a few hours for a visit.
Michael is reading all my emails to me and I enjoy hearing about what everyone is up to.
Thank you all for your kind thoughts and messages.
Penny
Wednesday, September 13, 2006
September 13, 2006 From Trish
Penny said I could post before heading home. So I'm sitting here not wanting to go at all and have been putting it off. How I wish I could stay.
It seems Monday was a little too much for her. She had gotten up for a while and Michael wheeled her out on the deck where we had supper. She even had a few bites of corn on the cob, potatoes and roast. Unfortunately that night was a very difficult one. Michael was up all night giving her break through meds every hour starting at 10:00pm taking her last med for breakthrough pain early the next morning. She was in a lot of pain.
In the morning things calmed down somewhat. She slept all morning and most of the afternoon. The nurse came late in the afternoon and I was impressed by how long she stayed with Penny. It was at least two hours if not longer. During this time, Penny asked the nurse about going into a hospice. She also talked to Michael last night about it and it appears that's what will happen over the next while. She will need to have an assessment done which determines whether she is at a point to be in a hospice but from the impression I got from the nurse, it doesn't look like there will be a problem with that. I asked what the criteria was and although she didn't go into to too much detail, she did say that they will accept anyone who they feel doesn't have more then 2 - 3 months. Also, since Penny is quite jaundice this week and she is pretty much bedridden these factors will be taken into account as well. The nurse will be stopping by today to take blood to get a better assessment of the liver.
I asked her how she felt about going into the hospice. She said to me that everything has been in stages and that this was the next one and that she's ready for it. She also mentioned how it's funny she can have little hopes of things like trips to BC or even going on a cruise but realistically she knows that's not going to happen. But I can see that the little fighter in her sure would like to try her darndest to make it happen. :) The positive thing about the hospice is that it'll give her a sense of relief knowing there are health care professionals around, hopefully getting her pain under control and that she can come home on the weekends as well. I think all round it's the right and best thing to do at this point.
Yesterday evening we had a nice time. A friend stopped by and we gathered in her bedroom and listened while he played a few tunes on his guitar. I think she really enjoyed it. Little things like that take her mind off the pain for a time.
During the night, it was better in that she wasn't up all night but this morning she's been in more pain again taking the meds for the breakthrough pain twice this morning. Night time and mornings are the worst for her so hopefully this afternoon is better and she can enjoy the pedicure that our younger sister, Paula, is planning on giving her. :) The difference between how she is between morning and late afternoon can be quite the change.
I'm not sure when she'll be able to post next. I'll mention to the family to ask her from time to time if they could type something for her so as all those that have expressed so much care and concern will continue to be updated from time to time.
On a personal note, I want to thank all those that continue to have her in their thoughts and prayers and have supported her and the entire family through all of this. It's meant so very much.
I hope I did ok sis!! :)
It seems Monday was a little too much for her. She had gotten up for a while and Michael wheeled her out on the deck where we had supper. She even had a few bites of corn on the cob, potatoes and roast. Unfortunately that night was a very difficult one. Michael was up all night giving her break through meds every hour starting at 10:00pm taking her last med for breakthrough pain early the next morning. She was in a lot of pain.
In the morning things calmed down somewhat. She slept all morning and most of the afternoon. The nurse came late in the afternoon and I was impressed by how long she stayed with Penny. It was at least two hours if not longer. During this time, Penny asked the nurse about going into a hospice. She also talked to Michael last night about it and it appears that's what will happen over the next while. She will need to have an assessment done which determines whether she is at a point to be in a hospice but from the impression I got from the nurse, it doesn't look like there will be a problem with that. I asked what the criteria was and although she didn't go into to too much detail, she did say that they will accept anyone who they feel doesn't have more then 2 - 3 months. Also, since Penny is quite jaundice this week and she is pretty much bedridden these factors will be taken into account as well. The nurse will be stopping by today to take blood to get a better assessment of the liver.
I asked her how she felt about going into the hospice. She said to me that everything has been in stages and that this was the next one and that she's ready for it. She also mentioned how it's funny she can have little hopes of things like trips to BC or even going on a cruise but realistically she knows that's not going to happen. But I can see that the little fighter in her sure would like to try her darndest to make it happen. :) The positive thing about the hospice is that it'll give her a sense of relief knowing there are health care professionals around, hopefully getting her pain under control and that she can come home on the weekends as well. I think all round it's the right and best thing to do at this point.
Yesterday evening we had a nice time. A friend stopped by and we gathered in her bedroom and listened while he played a few tunes on his guitar. I think she really enjoyed it. Little things like that take her mind off the pain for a time.
During the night, it was better in that she wasn't up all night but this morning she's been in more pain again taking the meds for the breakthrough pain twice this morning. Night time and mornings are the worst for her so hopefully this afternoon is better and she can enjoy the pedicure that our younger sister, Paula, is planning on giving her. :) The difference between how she is between morning and late afternoon can be quite the change.
I'm not sure when she'll be able to post next. I'll mention to the family to ask her from time to time if they could type something for her so as all those that have expressed so much care and concern will continue to be updated from time to time.
On a personal note, I want to thank all those that continue to have her in their thoughts and prayers and have supported her and the entire family through all of this. It's meant so very much.
I hope I did ok sis!! :)
Monday, September 11, 2006
September 11, 2006From Trish
My first morning with Penny, she mostly slept until about noon when she was more lucid and able to sit up for a while. She had a little fruit to eat in the morning and a tiny bit of peanut butter on a bun and some more fruit at lunch. That's probably the one thing that stood out right away is how little she is eating but thought she did pretty good at lunch time in that she ate both.
Shaving her legs, arm pits and then rubbing her feet and legs down with lotion seemed like a small thing to do and yet to her it meant the world. I'm sure also that part of the emotions involved stemmed from feeling like she's losing her independence. I hope she's realizes that it meant the world to me that I was able to do that for her. And that being able to touch her and rub her legs and feet gave me a sense of connection to her and a moment that I will cherish.
Shaving her legs, arm pits and then rubbing her feet and legs down with lotion seemed like a small thing to do and yet to her it meant the world. I'm sure also that part of the emotions involved stemmed from feeling like she's losing her independence. I hope she's realizes that it meant the world to me that I was able to do that for her. And that being able to touch her and rub her legs and feet gave me a sense of connection to her and a moment that I will cherish.
September 11, 2006No Sense of Time
Trish is typing this for me because I wanted to be sure people knew where things were at but it's just too hard to type and takes too much energy.
The radiation put a damper on the pain control again. We've had to up the meds for about a week and just now have dropped them a little bit. The radiation stopped the bleeding. The lumps are still there but I can tell they're starting to go away and aren't hurting quite so bad. I have the pain I think under control where it doesn't get much over 5 out of 10. I just have no strength and spend most of the day laying in bed. To get up to go to the washroom is my major undertaking in the day. So Micheal had to give me my first shower which was really hard. It's hard not having that independence. But now it's been a week and have gotten used to it. It felt so good today when Trish came and did the other important things like getting my legs shaved. Made me feel fresh and clean.
So now what? I don't know where this goes next. It seems like each week something new comes up that tells us time is getting shorter. So I guess this week the new thing is the jaundice that looks like it's here. So the nurse is going to come by tomorrow and do blood test. So we'll find out about that. My understanding is that it's probably the cancer moving into the liver. I have someone coming every day now which takes some pressure off Michael. It's hard to realize that this is probably the rest of my life. That there's not going to be alot of outings. Just visitors. People coming to see me. I'm very tired all the time and that can be from the radiation too. So hopefully that will get better by the end of this week. I'm still going to try to make a trip to Cranbrook to see my Grandmother one more time and hope to go by the end of the week, if all goes well.
I asked Trish to post on here anything that she might see while she is here visiting or that people might be interested in.
The radiation put a damper on the pain control again. We've had to up the meds for about a week and just now have dropped them a little bit. The radiation stopped the bleeding. The lumps are still there but I can tell they're starting to go away and aren't hurting quite so bad. I have the pain I think under control where it doesn't get much over 5 out of 10. I just have no strength and spend most of the day laying in bed. To get up to go to the washroom is my major undertaking in the day. So Micheal had to give me my first shower which was really hard. It's hard not having that independence. But now it's been a week and have gotten used to it. It felt so good today when Trish came and did the other important things like getting my legs shaved. Made me feel fresh and clean.
So now what? I don't know where this goes next. It seems like each week something new comes up that tells us time is getting shorter. So I guess this week the new thing is the jaundice that looks like it's here. So the nurse is going to come by tomorrow and do blood test. So we'll find out about that. My understanding is that it's probably the cancer moving into the liver. I have someone coming every day now which takes some pressure off Michael. It's hard to realize that this is probably the rest of my life. That there's not going to be alot of outings. Just visitors. People coming to see me. I'm very tired all the time and that can be from the radiation too. So hopefully that will get better by the end of this week. I'm still going to try to make a trip to Cranbrook to see my Grandmother one more time and hope to go by the end of the week, if all goes well.
I asked Trish to post on here anything that she might see while she is here visiting or that people might be interested in.
Subscribe to:
Posts (Atom)