Well hello again.
I was in to see Alice this afternoon. She was napping when I got there and then went to physio--so I sat by myself for the first 45 minutes or so. Doug also came in and we waited for her to come back. She was tired when she returned but glad to see us both.
She continues to move smoothly and fairly easily although her balance remains unsteady. Her speech was pretty even, too, although that seemed to waver as her fatigue mounted.
She's awfully happy to be done radiation--sounded the "I'm done treatment!" gong in the waiting area of the radiation suite. Johnathon (Glover) has video of it that we can pass around. It is 30 MB--so those of you with a slow internet connection might want to view it at someone else's house! She smiled as she told me about clanging the gong.
Many, many thanks to those of you who met her at radiation over the past two weeks. We appreciate your efforts very, very much. It made it less worrisome for us and re-assured her that there would be a friendly and familiar face waiting for her in London.
I spoke with Dianne, the Care Coordinator for the Palliative Wing. She understands that Alice's goal is to go home and thus, that is the hospital's goal for her, too. However, she will not be discharged hastily as there are many conditions to be met and supports that need to be put in place prior to this. Among them: She has to be stronger. They will not discharge her to an environment that she is not safe in. Given her poor balance currently, this means staying in the hospital. There are psw (personal support worker) hours that can be utilized in the morning and at night (for things like dressing and bathing), but seemingly not in the day time. If things go ideally during the day, this would not be a problem. However, the circumstances are such that ideal is a pipe dream. Her condition will deteriorate and she and Doug will need help trouble-shooting each loss of skill or new challenge that comes along.
So, they are supporting her idea of going home while holding the realistic view that it may (probably?) not happen. If and when she gains some more strength and resilience, she will be able to go out for the day or afternoon. I think this is a much more attainable goal. I don't think she's even been down to the gardens at the hospital, yet. Visitors: correct me if I'm wrong on that, please.
I asked Dianne if there was a chance that the docs would want to repeat the radiation, if they are pleased with the results. She was very clear: No, it is a one-shot deal. I guess the side-effects would start to out-weigh the benefits. Chemo is going on, for now, as are transfusions as needed. The hospital staff and Alice will be constantly assessing the cost-benefit balance of these interventions.
Thanks to Aunt Nancy, I learned today that you can buy parking tickets the cashier in the main lobby. I'm not sure if they have a minimum amount you must purchase, but they only cost $2 per ticket. I bought a bunch today and left some with Alice. She would love to be able to pay for your parking--it would give her such pleasure to be able to do something for the people who are doing so much for her. Please allow her to give you this small gift--if she remembers that she has them!
What else can I tell you? My cold is almost gone--have I been saying that for days or does it just feel like that!? Jo is back at work in Toronto--she may come down this weekend. I'll be here until Thursday morning of this week and I'm planning on going back to work this weekend. If I can change some plans around at home I'll return here Tues-Thurs of next week.
So--to recap--Alice is in decent shape, but tired. Hopefully her energy will come up without the fuss and bother of going to London for radiation everyday. Discharge from the hospital is not assured and certainly not in the near future. So, she is safe, her mind is intact and she seems game for visitors.
Keep your good thoughts coming. Thanks so much for all the notes--they are really important to keeping our own spirits up. I'm sorry that I cannot reply to each one individually--I hope you can feel my gratitude through these updates. Thanks for reading.
love, Robin.
I was in to see Alice this afternoon. She was napping when I got there and then went to physio--so I sat by myself for the first 45 minutes or so. Doug also came in and we waited for her to come back. She was tired when she returned but glad to see us both.
She continues to move smoothly and fairly easily although her balance remains unsteady. Her speech was pretty even, too, although that seemed to waver as her fatigue mounted.
She's awfully happy to be done radiation--sounded the "I'm done treatment!" gong in the waiting area of the radiation suite. Johnathon (Glover) has video of it that we can pass around. It is 30 MB--so those of you with a slow internet connection might want to view it at someone else's house! She smiled as she told me about clanging the gong.
Many, many thanks to those of you who met her at radiation over the past two weeks. We appreciate your efforts very, very much. It made it less worrisome for us and re-assured her that there would be a friendly and familiar face waiting for her in London.
I spoke with Dianne, the Care Coordinator for the Palliative Wing. She understands that Alice's goal is to go home and thus, that is the hospital's goal for her, too. However, she will not be discharged hastily as there are many conditions to be met and supports that need to be put in place prior to this. Among them: She has to be stronger. They will not discharge her to an environment that she is not safe in. Given her poor balance currently, this means staying in the hospital. There are psw (personal support worker) hours that can be utilized in the morning and at night (for things like dressing and bathing), but seemingly not in the day time. If things go ideally during the day, this would not be a problem. However, the circumstances are such that ideal is a pipe dream. Her condition will deteriorate and she and Doug will need help trouble-shooting each loss of skill or new challenge that comes along.
So, they are supporting her idea of going home while holding the realistic view that it may (probably?) not happen. If and when she gains some more strength and resilience, she will be able to go out for the day or afternoon. I think this is a much more attainable goal. I don't think she's even been down to the gardens at the hospital, yet. Visitors: correct me if I'm wrong on that, please.
I asked Dianne if there was a chance that the docs would want to repeat the radiation, if they are pleased with the results. She was very clear: No, it is a one-shot deal. I guess the side-effects would start to out-weigh the benefits. Chemo is going on, for now, as are transfusions as needed. The hospital staff and Alice will be constantly assessing the cost-benefit balance of these interventions.
Thanks to Aunt Nancy, I learned today that you can buy parking tickets the cashier in the main lobby. I'm not sure if they have a minimum amount you must purchase, but they only cost $2 per ticket. I bought a bunch today and left some with Alice. She would love to be able to pay for your parking--it would give her such pleasure to be able to do something for the people who are doing so much for her. Please allow her to give you this small gift--if she remembers that she has them!
What else can I tell you? My cold is almost gone--have I been saying that for days or does it just feel like that!? Jo is back at work in Toronto--she may come down this weekend. I'll be here until Thursday morning of this week and I'm planning on going back to work this weekend. If I can change some plans around at home I'll return here Tues-Thurs of next week.
So--to recap--Alice is in decent shape, but tired. Hopefully her energy will come up without the fuss and bother of going to London for radiation everyday. Discharge from the hospital is not assured and certainly not in the near future. So, she is safe, her mind is intact and she seems game for visitors.
Keep your good thoughts coming. Thanks so much for all the notes--they are really important to keeping our own spirits up. I'm sorry that I cannot reply to each one individually--I hope you can feel my gratitude through these updates. Thanks for reading.
love, Robin.
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