bergdorfblonde - update 9/13 Gary health top of OP
Aug 24, 2021 17:47:41 GMT
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Post by jenjie on Aug 24, 2021 17:47:41 GMT
9/13 update from this thread:
Regarding Hospice: Gary signed up last night and they began coming today. The intake guy (I think he's an RN) was very pleasant and personable. We made it clear that Gary was going in 3 weeks for another round of 3-day chemo. He said he'd put it in his notes, and if Moffitt's oncologist wanted to do more scans, we'd have to let them know ahead of time. Fine....... Sounded all great.
A chaplain came today and Gary appreciated it greatly. Then his head nurse from his team came for a long visit. She was quite frank and it was all a bit too upsetting. She said that he should think about even doing any more chemo or going to Moffitt since his prognosis was dire. She said it takes too much out of patients and in the long run it shortens their life. UPSETTING. We have full faith in Moffitt and really wanted to see if this chemo and the next round would shrink the tumors and give him a bit more time. If not, we'd re-think Moffitt.
My question to all of you people who have hospice experience: Was it that frank and upsetting to you??? They've cut out almost all of DH's meds except for a few. They added stronger pain meds, which I understand. They did explain a lot of the benefits of their hospice, but said they'd do chemo or treatment on their own if needed. They won't have a lot of the meds and things that Moffitt has to offer though. Moffitt has oncologists in each department. Hospice has a very experienced oncologist but it scares me a lot. It's as though we're saying that we give up and we're just asking them to make Gary comfortable. It ALMOST sounds like they want him to enjoy life as much as he can and not worry about "more time". That scares me.
When our pharmacist (who is a wonderful friend and extremely knowledgeable guy!!) asked about refilling Gary's monthly meds, I informed him about all of his meds that were stopped and he was shocked. That alone gives me pause.
Any thoughts??
Regarding other assistance: Hospice's social service person will call. We've tried via Moffitt's social service dept, and they said that transportation didn't work out because we were "too close". They DID get Gary a walker. That was about it......
Regarding churches, etc., if an assessment is via phone, I'm fine with that, but at this point Gary isn't going anywhere and he's been in bed most of the time. I've tried Catholic Charities here (no go). I've gone down a huge list given to me by our Congressman's office and hit dead ends with each one. Luckily we DO get some food delivered via The Volunteer Way (a local charity) once a month-mostly canned items and pasta/rice, etc...... They are very sweet.
I'll try to figure my way through this. I've been preoccupied with Hospice for the past few days. I haven't even gotten to shower or wash my hair and I thought that today was going to be a calmer day. I've been on the phone, answering the door and sitting with people since 9 am. Phew!
TIA.
P.S.: Gary has had a rough day today. Must be the chemo finally hitting him, so he's been in bed a lot. He's having a lot of side effects, so we're trying to deal with each one as they come. He's nauseous and hurt and tired. I have a feeling that it's going to keep getting worse quickly.
9/1 update on Gary’s health… @bergdorfblonde texted me this morning with disheartening news:
“I might not get online today. We just got word that Gary's cancer is worse than expected. He only has a few months to live (with chemo!!). Thinking thru so much, praying, making end of life plans. 😢”
She added, “I will. Unfortunately I have to begin clearing out the apt to move quickly or I'll get evicted wn he passes. Wish I cd just focus on him but these worries are pressing.”
I know she will appreciate our prayers and kind thoughts for them both.
Update from Gary’s FB: “ Well, in a blink of an eye, things do change. Got my bone biopsy results this morning and things are getting real. The bone cancer is the same as my liver cancer and very aggressive. I asked straight out, what is my life expectancy. WITH treatment, just months. That's a big change from the 2 to 5 years that they were giving me when it was just my liver. However, I still believe I'm going to beat this thing or at least go down fighting. I thank you all for your prayers and well wishes, but please don't give up on them now. Tomorrow another PET scan and chemo starts on the 8th for 3 days in a row, a little break, than do it all over again.
For those of you that believe in the spirit world, PM me if you want to send a message to someone, if it can be done, I will do it.“
***
I’ve received private messages from several people wanting to support @bergdorfblonde and her dh Gary after this update:
2peasrefugees.boards.net/thread/123749/dhs-pet-scan-results
If anyone would like to send a card or gift of some sort, please peamail me for her address.
She has told me more than once that she shares updates as our friend, not looking for tangible things but for friendship, prayers, good wishes, advice, etc. What an added blessing that some would like to do more.
I believe she is working on an Amazon list right now, but in the meantime my thoughts have leaned toward doordash GC, visa GC, amazon GC in order to relieve a bit of the burden. A card with good wishes would be equally appreciated!
Love you friend!
ETA here’s her amazon link:
www.amazon.com/hz/wishlist/ls/4BV5X2I7MJ2W/ref=nav_wishlist_lists_2?_encoding=UTF8&type=wishlist
Regarding Hospice: Gary signed up last night and they began coming today. The intake guy (I think he's an RN) was very pleasant and personable. We made it clear that Gary was going in 3 weeks for another round of 3-day chemo. He said he'd put it in his notes, and if Moffitt's oncologist wanted to do more scans, we'd have to let them know ahead of time. Fine....... Sounded all great.
A chaplain came today and Gary appreciated it greatly. Then his head nurse from his team came for a long visit. She was quite frank and it was all a bit too upsetting. She said that he should think about even doing any more chemo or going to Moffitt since his prognosis was dire. She said it takes too much out of patients and in the long run it shortens their life. UPSETTING. We have full faith in Moffitt and really wanted to see if this chemo and the next round would shrink the tumors and give him a bit more time. If not, we'd re-think Moffitt.
My question to all of you people who have hospice experience: Was it that frank and upsetting to you??? They've cut out almost all of DH's meds except for a few. They added stronger pain meds, which I understand. They did explain a lot of the benefits of their hospice, but said they'd do chemo or treatment on their own if needed. They won't have a lot of the meds and things that Moffitt has to offer though. Moffitt has oncologists in each department. Hospice has a very experienced oncologist but it scares me a lot. It's as though we're saying that we give up and we're just asking them to make Gary comfortable. It ALMOST sounds like they want him to enjoy life as much as he can and not worry about "more time". That scares me.
When our pharmacist (who is a wonderful friend and extremely knowledgeable guy!!) asked about refilling Gary's monthly meds, I informed him about all of his meds that were stopped and he was shocked. That alone gives me pause.
Any thoughts??
Regarding other assistance: Hospice's social service person will call. We've tried via Moffitt's social service dept, and they said that transportation didn't work out because we were "too close". They DID get Gary a walker. That was about it......
Regarding churches, etc., if an assessment is via phone, I'm fine with that, but at this point Gary isn't going anywhere and he's been in bed most of the time. I've tried Catholic Charities here (no go). I've gone down a huge list given to me by our Congressman's office and hit dead ends with each one. Luckily we DO get some food delivered via The Volunteer Way (a local charity) once a month-mostly canned items and pasta/rice, etc...... They are very sweet.
I'll try to figure my way through this. I've been preoccupied with Hospice for the past few days. I haven't even gotten to shower or wash my hair and I thought that today was going to be a calmer day. I've been on the phone, answering the door and sitting with people since 9 am. Phew!
TIA.
P.S.: Gary has had a rough day today. Must be the chemo finally hitting him, so he's been in bed a lot. He's having a lot of side effects, so we're trying to deal with each one as they come. He's nauseous and hurt and tired. I have a feeling that it's going to keep getting worse quickly.
9/1 update on Gary’s health… @bergdorfblonde texted me this morning with disheartening news:
“I might not get online today. We just got word that Gary's cancer is worse than expected. He only has a few months to live (with chemo!!). Thinking thru so much, praying, making end of life plans. 😢”
She added, “I will. Unfortunately I have to begin clearing out the apt to move quickly or I'll get evicted wn he passes. Wish I cd just focus on him but these worries are pressing.”
I know she will appreciate our prayers and kind thoughts for them both.
Update from Gary’s FB: “ Well, in a blink of an eye, things do change. Got my bone biopsy results this morning and things are getting real. The bone cancer is the same as my liver cancer and very aggressive. I asked straight out, what is my life expectancy. WITH treatment, just months. That's a big change from the 2 to 5 years that they were giving me when it was just my liver. However, I still believe I'm going to beat this thing or at least go down fighting. I thank you all for your prayers and well wishes, but please don't give up on them now. Tomorrow another PET scan and chemo starts on the 8th for 3 days in a row, a little break, than do it all over again.
For those of you that believe in the spirit world, PM me if you want to send a message to someone, if it can be done, I will do it.“
***
I’ve received private messages from several people wanting to support @bergdorfblonde and her dh Gary after this update:
2peasrefugees.boards.net/thread/123749/dhs-pet-scan-results
If anyone would like to send a card or gift of some sort, please peamail me for her address.
She has told me more than once that she shares updates as our friend, not looking for tangible things but for friendship, prayers, good wishes, advice, etc. What an added blessing that some would like to do more.
I believe she is working on an Amazon list right now, but in the meantime my thoughts have leaned toward doordash GC, visa GC, amazon GC in order to relieve a bit of the burden. A card with good wishes would be equally appreciated!
Love you friend!
ETA here’s her amazon link:
www.amazon.com/hz/wishlist/ls/4BV5X2I7MJ2W/ref=nav_wishlist_lists_2?_encoding=UTF8&type=wishlist
