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Post by scrappintoee on Sept 6, 2021 2:49:06 GMT
He's having pain in his back (1 spot of his bone cancer), and I'm reminded that this is only the beginning. Trying to get ahold of his Oncologist regarding pain meds, but no one is available due to the holiday weekend Well, that is just UNACCEPTABLE !!!  The oncologist / their staff didn't give you ANY way to reach them during this holiday? Maybe you could try calling one of his OTHER doctors,and get him some pain meds !!!!!! I cannot believe they wouldn't have addressed his pain and ALREADY prescribed meds to cover him over the holiday !!!! Also, with the pain he is having, and his diagnoses, I think they need to set you up with a hospice nurse !!! I wish they already had! Those nurses would be able to come to your home 24/7 !!!! Once you get ahold of SOMEONE, demand that they start hospice care !!! This will also help YOU to get some sleep !!! (( hugs )) |
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Post by jenjie on Sept 6, 2021 3:04:42 GMT
scrappintoee thank you. It’s such a hard time for them. I had so many who walked in my shoes turn back and support me when it was my turn. I hate that I need to, same as with our sweet Donna. Because I hate to see my friends hurting. But it’s my honor to be part of the blessing.
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Post by jenjie on Sept 6, 2021 3:09:12 GMT
He's having pain in his back (1 spot of his bone cancer), and I'm reminded that this is only the beginning. Trying to get ahold of his Oncologist regarding pain meds, but no one is available due to the holiday weekend Well, that is just UNACCEPTABLE !!! The oncologist / their staff didn't give you ANY way to reach them during this holiday? Maybe you could try calling one of his OTHER doctors,and get him some pain meds !!!!!! I cannot believe they wouldn't have addressed his pain and ALREADY prescribed meds to cover him over the holiday !!!! Also, with the pain he is having, and his diagnoses, I think they need to set you up with a hospice nurse !!! I wish they already had! Those nurses would be able to come to your home 24/7 !!!! Once you get ahold of SOMEONE, demand that they start hospice care !!! This will also help YOU to get some sleep !!! (( hugs )) This is a really good idea. Hospice is such a scary word, especially when you’ve been slapped in the face with this unexpected news. @bergdorfblonde I know you don’t want to go there in your mind, but you need the help. I was told hospice doesn’t hasten or prolong death, it just makes the time leading up more comfortable. It’s something worth considering. |
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Post by christine58 on Sept 6, 2021 3:11:26 GMT
@bergdorfblonde. Hospice care also doesn’t mean death is imminent. Please contact them. They will help with meds etc.
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Post by nlwilkins on Sept 6, 2021 3:33:50 GMT
Hubbie has been seeing a doctor from the palliative care unit for almost two years. It does not mean he is about toe die, but that he has a terminal diagnosis. She is the one who prescribes his pain medications. We have a number to call for refills for the pain medications and don't have to go in every month for refills.
If he has pain in a particular place in his back that a spot that cancer has settled in, he can get radiation to ease the pain. The radiation reduces the size of the spot of cancer, and thus eases the pain. They did that for my husband and it was amazing how well it worked. It took just ten doses of radiation and it was about a year and a half ago and the pain in that location has not come back. The thing to remember is that while the doctors may not be able to cure him, they can keep him pain free in numerous ways. If you do not communicate with him as soon as possible, it will take more time to get the treatment he needs.
Call your hospital's after hours nurse, and see what she has to say. He should not have to wait til Tuesday for relief
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Post by tryingtobewise on Sept 6, 2021 4:27:32 GMT
I am saying prayers for both of you @bergdorgblonde.
@jenje I’m largely a lurker (since the old board) but I try to keep current. Thank you for the updates you provide.
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Post by Deleted on Sept 6, 2021 21:59:49 GMT
Just popped on quickly, so I'll update. Thank you all for your words!! Today Gary did see his Home Health Nurse. She was assessing if he improved enough to stop seeing them. This was from his local hospital stay 1 month ago with his hemotoma pain. I updated her about his recent liver/bone cancer diagnosis and tests. She DID mention Hospice. She put in for it immediately, and they called me back within the hour. Hospice said that because he's about to begin chemo this week (even though it's merely to attempt to shrink some tumors and it's NOT a cure), they'd have to check all paperwork with Moffitt and his primary doctor first. It'll take at least 1-2 weeks.  I'm aware that Hospice is used for situations like his and it sounds like they'd be even more helpful than the Home Health people were. We'd really appreciate that!! As far as the pain meds, no one from Moffitt would give an Rx without seeing him first. His primary doctor had a referring doctor call me back and they said they weren't updated on Gary's conditions. It infuriated me. We wound up just stretching out the Oxy that he had for his knee (hard to keep up with his medical stuff lately!). I'll continue calling Moffitt tomorrow and hope that SOMEONE from his team is back from their super-long weekend. He's supposed to start chemo on Wednesday but I'm not sure if it'll happen. He's been pretty weak and in pain. Good news is that his appetite is still good though! xo Chris
nlwilkins : That IS the nurse we've been calling. She will NOT prescribe any meds for him without seeing him. That means I somehow get him in our car, ride for at least 1 hour, and then most likely wait for 12+ hours to be seen. He's physically not up to it! His primary and even Moffitt doctors, specialists and urgent care all seem to be on a very long weekend, and the people covering for them are too busy or uninformed to help. Even the Home Health nurse today (from his hospital stay last month!) couldn't help. She only said that she'd put in for Hospice, which apparently doesn't happen overnight here because he's beginning chemo.
jenjie : Thank you SO much, again, for relaying messages. My mind is more muddled every day and it's filled with more worry and attempts to plan his care. It's a lot, but I'm still trying my best. Thank you, my friend!!!!!!!!
Thank you all for your suggestions and support. xo
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Post by ntsf on Sept 6, 2021 22:05:05 GMT
do not waste precious energy on sending individual responses to us.. direct it all to yourself and your husband. we are here to uphold you two and not to get acknowledgement
prayers and hugs!!
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Post by auntiepeas on Sept 6, 2021 22:19:02 GMT
I’m so sorry to hear your latest update - that sounds so stressful and frustrating but also like you’re doing all you can.
Sending up still more prayers for the help you and Gary need, and gentle hugs to you both.
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Post by mom2rjcr on Sept 6, 2021 22:20:00 GMT
Continuing to pray for you both. Hugs.
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huskergal
Pearl Clutcher
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Post by huskergal on Sept 6, 2021 22:22:20 GMT
Praying for you and your husband!
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Post by jenjie on Sept 6, 2021 22:33:02 GMT
@bergdorfblonde you don’t feel like it but you are doing SUCH a good job being such an awesome caregiver for Gary. I’m sorry you’re getting so much of a runaround.
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Post by kiera on Sept 6, 2021 22:35:33 GMT
@bergdorfblonde I'm frustrated on your behalf about the long weekend and crickets. I hope that Gary can manage his pain soon and get some more answers, and that you can get some help with getting some of this off of your plate so you can focus your attention on other aspects - as well as yourself. Hugs to you both!
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Post by peanutterbutter on Sept 6, 2021 23:06:55 GMT
@bergdorfblonde I am so sorry to hear about all of this, and your husband is very lucky to have you in his corner! Not to add one more thing to your list, but have you ever contacted his insurance to see about complex care management? www.aafp.org/family-physician/practice-and-career/getting-paid/coding/chronic-care-management.htmlIf you google Medicare (I'm assuming medicare?), Medicare and complex care management there is a 14 page pdf with more info that I can't link here. It might be worth calling to see if he can get that, it would add another layer of oversight nad support to his care. Sending big virtual hugs and lots of prayers your family's way. |
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Post by tealpaperowl on Sept 7, 2021 12:28:34 GMT
Oh no, my heart goes out to her. I can't imagine this situation. Many positive thoughts going her way.
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Post by Deleted on Sept 7, 2021 15:37:46 GMT
@bergdorfblonde you don’t feel like it but you are doing SUCH a good job being such an awesome caregiver for Gary. I’m sorry you’re getting so much of a runaround. Thank you SO much!!!!!! Now it's Tuesday. Party weekend should be over, but I still cannot get ahold of anyone on his team at Moffitt. Just called his Primary doctor. Waiting for a call back from there too......... Answers and direction would be nice at this point.
On a sweet note, a friend of mine wanted to come over today to meet Gary. I met her 3 years ago when I visited my mom on LI. She's also from LI and she was going back to yearly go to her husband's favorite beach with family and friends and celebrate his life. It's the date he passed (from cancer). She's friends with Gary online and insists on now meeting him and bringing one of her incredible seafood dinners. Just checking to see when we'll actually be home (if we ever get to see a doctor today).
Gary is still in pain. It's only relieved when he's lying down. I'm trying to work on getting him pain meds and seeing what the plan for pain mgmt will be + check into getting Hospice asap. xo
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Post by Deleted on Sept 7, 2021 15:56:01 GMT
@bergdorfblonde I am so sorry to hear about all of this, and your husband is very lucky to have you in his corner! Not to add one more thing to your list, but have you ever contacted his insurance to see about complex care management? www.aafp.org/family-physician/practice-and-career/getting-paid/coding/chronic-care-management.htmlIf you google Medicare (I'm assuming medicare?), Medicare and complex care management there is a 14 page pdf with more info that I can't link here. It might be worth calling to see if he can get that, it would add another layer of oversight nad support to his care. Sending big virtual hugs and lots of prayers your family's way. While I'm waiting for Gary's primary doctor to call back, I did check your link. They said this, "The American Academy of Family Physicians is a membership organization and does not provide medical advice. We assist our members who are family physicians with their continuing medical education and other membership matters." It doesn't apply to us, sadly. |
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Post by librarylady on Sept 7, 2021 16:00:52 GMT
@bergdorfblonde you don’t feel like it but you are doing SUCH a good job being such an awesome caregiver for Gary. I’m sorry you’re getting so much of a runaround. Thank you SO much!!!!!! Now it's Tuesday. Party weekend should be over, but I still cannot get ahold of anyone on his team at Moffitt. Just called his Primary doctor. Waiting for a call back from there too......... Answers and direction would be nice at this point.
On a sweet note, a friend of mine wanted to come over today to meet Gary. I met her 3 years ago when I visited my mom on LI. She's also from LI and she was going back to yearly go to her husband's favorite beach with family and friends and celebrate his life. It's the date he passed (from cancer). She's friends with Gary online and insists on now meeting him and bringing one of her incredible seafood dinners. Just checking to see when we'll actually be home (if we ever get to see a doctor today).
Gary is still in pain. It's only relieved when he's lying down. I'm trying to work on getting him pain meds and seeing what the plan for pain mgmt will be + check into getting Hospice asap. xo
There is Palliative Care as well as Hospice for Gary's situation.
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Post by Basket1lady on Sept 7, 2021 16:07:25 GMT
Is Moffit the VA or a clinic on base? In my experience, it’s almost impossible to get a military doctor after hours. I’ve had them call me back after the dinner hour, but it’s impossible to contact them after the reception desk has closed for the day. You just use the ER. At this point, I’d wait for his primary to call back. If you haven’t heard from them, call back about 3pm and tell them that Gary is unable to stand or get out of bed due to the pain and that you are running out of pain meds. Also mention how many pills you have left. Be very honest and don’t sugarcoat it.
Unfortunately, resources are being allocated in your area and doctors are likely floating departments. Hopefully Gary’s doctor isn’t one of them. If nothing else, he’s likely swamped with a backlog of calls from the long weekend.
Doctors deserve time off. But the lack of care after duty hours makes me crazy. It’s frustrating to be just left waiting when someone that you love is in pain.
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Post by Deleted on Sept 7, 2021 16:41:40 GMT
Thank you all. basket1lady : Gary is a Veteran and occasionally went to the V.A. for behavioral health and general health, but he goes to Moffitt Cancer Care for his pressing cancer journey. They've NEVER been this lax at answering important calls before. I've written on their patient portal also; no response. Waiting for a call back from his oncologist there (Gary called) today. He has an appt with his primary care doctor to check out his backpain, at 2:20. Hopefully I'll have some info by the end of this day. (Checking into the pallative care and hospice and will continue to push for it). Thank you all for your advice. xo |
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Post by peanutterbutter on Sept 7, 2021 16:58:53 GMT
@bergdorfblonde I am so sorry to hear about all of this, and your husband is very lucky to have you in his corner! Not to add one more thing to your list, but have you ever contacted his insurance to see about complex care management? www.aafp.org/family-physician/practice-and-career/getting-paid/coding/chronic-care-management.htmlIf you google Medicare (I'm assuming medicare?), Medicare and complex care management there is a 14 page pdf with more info that I can't link here. It might be worth calling to see if he can get that, it would add another layer of oversight nad support to his care. Sending big virtual hugs and lots of prayers your family's way. While I'm waiting for Gary's primary doctor to call back, I did check your link. They said this, "The American Academy of Family Physicians is a membership organization and does not provide medical advice. We assist our members who are family physicians with their continuing medical education and other membership matters." It doesn't apply to us, sadly. Try this link instead. It is the pdf I referenced. I figured out how to copy the link for it this time, the first one was just meant to be some general info www.cms.gov/outreach-and-education/medicare-learning-network-mln/mlnproducts/downloads/chroniccaremanagement.pdf |
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Post by ntsf on Sept 7, 2021 20:04:24 GMT
it must be something in the air.. my dh was at the doc this morning..(specialist...) and they said they would call in new pain meds. 3 hours later.. crickets. he left a message with clinic as they don't take phone calls..
hope you get it those meds today. no one should suffer and wait.
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Post by merry27 on Sept 7, 2021 20:22:50 GMT
I’m so sorry to hear about this. You have been such an amazing caregiver. When we dealt with Hospice you couldn’t receive any chemo or treatment at all. We had to stop all of that immediately. I will add that Hospice is such a wonderful organization. I think with palliative care you can still receive chemo?
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Post by Deleted on Sept 8, 2021 0:25:13 GMT
it must be something in the air.. my dh was at the doc this morning..(specialist...) and they said they would call in new pain meds. 3 hours later.. crickets. he left a message with clinic as they don't take phone calls.. hope you get it those meds today. no one should suffer and wait. Sorry about your DH. Hope he finally got his pain meds!!!
DH met with his PCP's R.N. She examined his back, and said that she believes this pain is separate from bone cancer pain (too soon). She did order him Apap/Codeine (300mg/30mg) and Tizanidine 24mg. Gosh, neither of them would even touch my pain, but I didn't say anything....... She said that this is a good start and he has to meet with a pain mgmt doctor either with Moffitt or thru his PCP, asap. The R.N. also is putting in for Hospice and trying to push it through. I'm grateful!
He took 1 apap/codeine and it helped him a lot. Phew.
His Moffitt Oncologist called while we were out and left a msg saying that maybe tomorrow's chemo should be postponed 1 day and we should have a meeting with her about his "choices". Leaves me very worried.......... If the chemo will only bring him a short time more, I don't think he'll opt to do it.
BRIGHT NEWS: A friend of mine (I met her at the airport in Tampa when I last went to visit my mom) came over our place and brought Gary a HUGE container of fresh spaghetti with clams, shrimp and mussels that she made. He LOVEDDDDDDDDD it, and he loved meeting her!!!! Such a special, happy visit!!! It's amazing how time slips by, but I haven't seen her in over 3 years since we first met! We'll make it a point to see her more often. She's also from Long Island, and she lost her dear husband from cancer 7 years ago. She wanted to meet Gary and brighten up his spirits. She did just that! 
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Post by snoopy on Sept 8, 2021 0:37:32 GMT
I’m so glad to hear you had such a nice visit with your friend! How sweet of her to bring a homemade meal. I can’t imagine how frustrating and upsetting it must be when Gary is in pain and you are waiting for a response from his doctors, but you are truly a warrior. You are doing an amazing job of fighting for him and being such a great advocate for him.
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Post by ntsf on Sept 8, 2021 1:02:41 GMT
glad you have a bit clearer path and your husband is getting some of what he needs (ps, my husband got his meds after 5 hours.. but he is nowhere is near serious)
hugs and prayers..continuing always.
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Post by hookturnian on Sept 8, 2021 5:22:37 GMT
Hugs to you both. I hope the pain meds help, and that the oncologist visit goes well. Can you access respite care so you get some time to see to your own health too? You guys have been through so much in the year or so I've been on this board.
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Post by Skellinton on Sept 8, 2021 12:43:42 GMT
@bergdorfblonde. Hospice care also doesn’t mean death is imminent. Please contact them. They will help with meds etc. Yes, hospice technically means a patient has a prognosis of 6 months or less to live, but that obviously is not a concrete date. Hospice patients can live much longer then that on hospice. The services hospice can provide are invaluable. Please consider bringing them in. |
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Post by Deleted on Sept 9, 2021 3:30:33 GMT
I’m so sorry to hear about this. You have been such an amazing caregiver. When we dealt with Hospice you couldn’t receive any chemo or treatment at all. We had to stop all of that immediately. I will add that Hospice is such a wonderful organization. I think with palliative care you can still receive chemo? He just got approved for Hospice. They're meeting with us tomorrow night. They got his records fromMoffitt and are aware that his chemo is to possibly extend his life for a bit. He is terminal. I'm sure we'll learn more tomorrow night, but it sounds like they'll be a huge help. Gary begins chemo tomorrow, Friday and Saturday. Then he has 3 weeks off and we see if he's up for another round, etc. His oncologist spoke with us via Zoom today and answered all questions. His recent back pain doesn't sound like it's due to his bone cancer. She said it would be ongoing and wouldn't subside. She explained his possibilities much more clearly. The chemo is up to 60% effective at shrinking the tumors and extending his life for a few months. Some people have lived a year or longer. He's a bit more hopeful today. I'll be busy with his chemo sessions until Sunday and hope it'll go well. It's amazing how much we've both blocked out of our memories about chemo. I'm about to look it up to see if he had any restrictions before tomorrow's chemo, and then head to bed. As far as his back pain, we saw his primary Doctor (nurse, actually), and she prescribed Tylenol 2s for him and tizandine for muscle relaxer. He's taking it more often, as prescribed and seems to be in a bit less pain. I'll explain it all to Hospice. Xo |
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Post by lucyg on Sept 9, 2021 3:37:56 GMT
Thanks for the update, @bergdorfblonde. Wishing him comfort and peace.
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The oncologist / their staff didn't give you ANY way
I'm aware that Hospice is used for situations like his and it sounds like they'd be even more helpful than the Home Health people were. We'd really appreciate that!!
