|
|
Post by Scrapper100 on Aug 24, 2021 1:44:07 GMT
Hugs that you didn’t get the news you were hoping for.
|
|
|
|
Post by scrappintoee on Aug 24, 2021 1:58:34 GMT
Lots of (( hugs ))
|
|
|
|
Post by yodutchess on Aug 24, 2021 2:00:23 GMT
Hugs to you both.
|
|
|
|
Post by scrapbookwriter on Aug 24, 2021 2:16:10 GMT
Thinking of you with love.
|
|
|
|
Post by quietgirl on Aug 24, 2021 2:25:52 GMT
Thinking of you both
|
|
FurryP
Drama Llama
To pea or not to pea...
Posts: 7,283
Site Supporter
Jun 26, 2014 19:58:26 GMT
|
Post by FurryP on Aug 24, 2021 2:27:11 GMT
Hoping for the best for the both of you. One day at at time, remember that.
|
|
Deleted
Posts: 0
Nov 23, 2024 19:06:17 GMT
|
Post by Deleted on Aug 24, 2021 3:22:19 GMT
I'm so sorry. I don't want to be an alarmist, but when cancer spreads to the bones, it's extremely painful - and that's coming from patients who went through several years of cancer treatments. I so hope the spots are not bone metastasis - but if so, you need to be prepared - feel free to reach out if/when you need to - been there done that and I'm not going to lie to you it's tough. I'm so sorry that you've had to go through that with someone. Gary has NEVER endured pain in most of his 75 years, even through chemo and his bladder/prostate removal, etc. He had awful pain with the hemotoma in his liver a few weeks ago and I called for an ambulance. It stopped within a few hours (and almost a week in the hospital).
The oncologist asked me if he has pain anywhere (so did my brother), and he doesn't have any. I'd hate to think of him in pain with it if it is bone metastasis. He often told me that he could never endure the pain I live with daily, and I fear thinking that he'd feel pain. I WILL have to reach out if he has to endure any pain that lasts or gets worse and worse. Damn...... Thank you for the warning though.  |
|
|
|
Post by scrapmaven on Aug 24, 2021 3:29:41 GMT
@bergdorfblonde I really wish you'd received better news. Hopefully, they start chemo right away. You so deserve a huge break and I'm sad that you have to fight this nasty illness w/your dh. You have lots of support here.
|
|
|
|
Post by snoopy on Aug 24, 2021 3:31:58 GMT
@bergdorfblonde I’m so sorry for all that you and your husband are having to endure. I see you replying to other people in this thread and other threads, and you always show kindness and compassion toward others. That is something I admire about you. I know you are, and will continue to be, the best caregiver to your husband. Just remember to take care of yourself too.
|
|
Deleted
Posts: 0
Nov 23, 2024 19:06:17 GMT
|
Post by Deleted on Aug 24, 2021 3:43:01 GMT
Every cancer is different as I am sure you know. My husband's cancer spread to his bones and we did not find out as soon as we should have as the radiologist missed it. But that was over two years ago, so we have calmed down a bit since then. He tried chemo but after the second dose he turned septic. So now he takes chemo pills every day for the rest of his life, however long that will be. He has been in the hospital twice since the diagnosis, once for the sepsis, and the other for blood clots in his lungs. Now we just take one day at a time. He still is able to do everything a 79 year old man could be expected to do and then some. Just this weekend he has been out in the yard digging out around a leaking pipe in the hottest days of the summer. You can't make him slow down. We do make sure to keep on top of things and he has scans and doctor's appointments all the time. All this to say, you never know what to expect and not to expect the worst. It is hard I know, and it is hard not to try and stop them from doing things they want to do. He takes a minimal does of methadone on a daily basis to keep the pain at bay, and when it gets really bad, he has as needed meds to help. The hardest for me is the emotional swings he experiences. As it is prostate cancer, he is given shots every 6 months to suppress his testosterone, so I suspect that is what is causing the mood swings. Please know you are in my prayers and if there is anything we can do, the peas will help. Do not underestimate the impact of their support and care. {{{{{hugs}}}} This is an incredible story. Thank you so much for sharing!! I'm not sure that Gary has as much of a chance as your DH has had thusfar. We met with this GI Neuroendocrine Oncologist because his liver biopsy showed 2 lesions. The PET scan was only a few days later and 3 spots on his bones showed up. I'm hoping somehow that it's not spreading quickly, but the liver lesions popped up quickly too.
As far as sepsis, Gary has a tendency of becoming septic quickly. He's had it 3 times in the past few years. Not sure what I'll be looking out for in the future...... He's been run-down due to a number of his medical issues, so he's not that active. He does make crafts and is busy selling his crafts on eBay. He's able to stop and rest when he wants to.
Thank you for the detailed information about your husband's case. I'm surprised he's able to be so physical while on methadone. DH never got shots to suppress his testosterone with his prostate cancer. They always focused on his bladder cancer because it became highly aggressive. They removed his prostate because he had slow-growing prostate cancer too. Reading his reports made it seem like the prostate cancer was a bigger deal that we had thought (could be my interpretation of the reports though). He did take testosterone when we were first together because that's when his issues began. That created mood swings, and he stopped the shots (he did it himself) pretty quickly. Wasn't worth the side effects.
DH reaches out to cancer support groups and he's become vocal about his illness. I'm glad. He kept things very private until his bladder cancer got out of control and began reading and sharing online. He also has a therapist thru Moffitt to speak to monthly. I'm sure he could speak more often as he's going through rougher times. He also has a lot of friends that he speaks to via phone or the internet. None of our friends live closeby. He's also got my large family who he is in touch with almost daily and he opens up to them..... They adore him.
Thank you again. I'll keep a few key things that you said in mind. Every cancer is different. Every road is different too. I'm just praying that any pain will be kept to a minimum, and I could be as supportive as you are. I'm used to being in severe pain, so seeing someone else in serious pain will be a tough road for me to deal with alone. Thank you.
|
|
luckyjune
Pearl Clutcher
Posts: 2,687 
Location: In the rainy, rainy WA
|
Post by luckyjune on Aug 24, 2021 3:51:10 GMT
Big hugs and all the healing vibes in the universe are coming your way.
|
|
Deleted
Posts: 0
Nov 23, 2024 19:06:17 GMT
|
Post by Deleted on Aug 24, 2021 3:59:05 GMT
@bergdorfblonde I’m so sorry for all that you and your husband are having to endure. I see you replying to other people in this thread and other threads, and you always show kindness and compassion toward others. That is something I admire about you. I know you are, and will continue to be, the best caregiver to your husband. Just remember to take care of yourself too. Thank you SO much for saying that. It made me tear up. I've learned to have compassion for others in need from being in long hospital stays as a young teen. Back then (early 1970's) you'd go alone and family could visit during the day for a certain time. There was no such thing as a parent staying with their child in the hospital. I built camaraderies with other young patients during my dozens of surgery stays.
I try to take care of my husband, and he honestly has taken care of me over the past 13 years. I've lost count of my surgeries since we were together but it's probably 10 or more. Whomever is healthiest at the time, helps the other one in our relationship.
Caring for myself has really fallen by the wayside. I've been the main driver in our family and I'm also caring for my 33 yo DD who is bipolar and not doing too well. I could only spread myself so thin. She doesn't drive anymore and she despises it here. It's tough to give her the tools to navigate (again) when I'm busy caring for DH. So, yeah, I'm not caring for myself as I should, at all. I keep on saying I'll try when I get a break, but it doesn't come. Actually, THIS is my little break........
Thank you again for saying what you did, and I'll try to carve out even 15 min a day maybe trying yoga or something to do for myself. xo
|
|
Deleted
Posts: 0
Nov 23, 2024 19:06:17 GMT
|
Post by Deleted on Aug 24, 2021 4:08:54 GMT
Does she think the current liver cancer has possibly metastasized to his bones, or does she think it has another source? What are they doing for the bone biospy? When I had mine the went in at the back of my hip area. The first one the guy used a sort of hand drill thing. Didn't hurt much, just felt the pressure. The second one the did a punch. Oh holy fuckoly! I sweat right thru a paper gown to the point it disintegrated. I strongly recommend the drilling method. 😳 Sending him good vibes for an easy biopsy. She's not really verifying it until she goes over the bone biopsy and the 2nd PET scan on 9/2. All she said this morning was that it hasn't metastasized anywhere else, but she sees 3 suspicious spots on his bones (sternum, left shoulder and lower back in the middle). That last PET scan on Saturday (gosh, it seems like it was weeks ago already!!) was to see where the liver cancer (neuroendocrine) came from. Now she thinks that the liver might be the primary source. His bladder/prostate cancer seem to be separate from all of this and nothing metastasized from that.
Not sure where they're doing the bone biopsy, but now I'll ask. Thank you. Not sure if it's one of those 3 spots? DH had his liver biopsy just about a month ago and had pain and pressure right away. It increasingly got worse (which shouldn't have happened). Turned out he developed a hemotoma in his liver that was very painful. He's already very worried about this biopsy having a similar outcome, so he's anxious. I don't blame him!!!
Thanks for the good vibes. He and I both have had terrible experiences with our biopsies (mine was on my uterus before a hysterectomy, but those 3 or 4 attempts at getting thru to my uterus failed. We didn't know that my entire uterus was filled with a huge fibroid. OUCH. DH was right there in the room with me, seeing me scream in pain--no pre-medication for it.)
|
|
|
|
Post by catck on Aug 24, 2021 4:26:12 GMT
You’re both forever in my thoughts and glad that your DH is upbeat and feeling good. Huge hugs.
|
|
|
|
Post by lesserknownpea on Aug 24, 2021 5:02:17 GMT
Girl, I’m going to nag you again about self care. Take time to fortify yourself NOW. You know that’s what your DH wants and will need. Too much is riding in your shoulders to neglect yourself.
I’m sad about the news, and I’m glad you have people to mentor you if the bone spots start hurting. I’ve taken care of people for whom the pain was horrific. I’m not trying to scare you, but prepare. I know you say he doesn’t deal with pain well, but the point of a good plan is for him not to be in bad pain. You get on top of the pain.
But seriously, make a list of things that make YOU feel refreshed and renewed. And get cracking!
|
|
|
|
Post by hookturnian on Aug 24, 2021 5:05:03 GMT
Hugs to you both. I hope the upcoming tests provide more clarity and you can get a good treatment plan.
|
|
|
|
Post by Lexica on Aug 24, 2021 6:03:48 GMT
Girl, I’m going to nag you again about self care. Take time to fortify yourself NOW. You know that’s what your DH wants and will need. Too much is riding in your shoulders to neglect yourself. I’m sad about the news, and I’m glad you have people to mentor you if the bone spots start hurting. I’ve taken care of people for whom the pain was horrific. I’m not trying to scare you, but prepare. I know you say he doesn’t deal with pain well, but the point of a good plan is for him not to be in bad pain. You get on top of the pain. But seriously, make a list of things that make YOU feel refreshed and renewed. And get cracking! I was going to say the same thing. As you know, I live with chronic pain and back when it all started, my doctor was not good at helping me manage it. When I switched jobs, I switched medical coverage. My new doctors were very helpful and responsive, putting me on time-released morphine that lasts for 12 hours between pills. My previous medication had to be taken every 4 hours, so that gave me multiple times each day and throughout the night that I had to deal with the medication waining and the pain building. I was always anxious as the pain came back, fearing what level it would get to before it was time to take the next pill and having it kick in. It was a constant roller coaster of pain ramping up and subsiding. Now with the 12-hour pills, I take a break-through pain pill an hour before the time-release pill is due. It covers me during the switch over from one pill to the next. My stress over the returning pain has diminished considerable and my life is more normal than it was without the morphine. I know you know about this, but with all you have on your plate, it is easy to let time get away from you. I set alarms so that I don't get busy and screw up my med schedule, keeping the right dose on board at all times. Staying on top of the pain meds has seriously given me a better quality of life. I can recommend using Alexa as a medication timer. With its voice response ability it makes shutting each of the 4 daily alarms so easy. I don't even have to get up off the couch to shut it off. I have 4 weekly medication dispensers and I sit down once a month to fill them all. I used a sharpie to number them and when I get to box 4, I know to go online and order the pain meds again. It is an easy system and keeps me on schedule. It may sound silly, but sticking to a tight pain medication schedule is crucial to staying on top of the pain. If you wait until you feel the pain coming on, you're in trouble because stopping existing pain is harder than preventing pain, if that makes sense. You can use a regular alarm or smart phone of course, I just find Alexa works best for me. Do you have one? |
|
RedSquirrelUK
Drama Llama
Posts: 6,920
Location: The UK's beautiful West Country
|
Post by RedSquirrelUK on Aug 24, 2021 6:52:27 GMT
I was going to say that Gary has excellent support and responsive care, but you need to make sure you allow yourself the same consideration. Everyone else has said that better than I can, so I'll just send my hugs to you both, and to everyone who is enduring pain.
|
|
muggins
Pearl Clutcher
Posts: 2,861
|
Post by muggins on Aug 24, 2021 6:55:29 GMT
Huge hugs to you and Gary.
|
|
Deleted
Posts: 0
Nov 23, 2024 19:06:17 GMT
|
Post by Deleted on Aug 24, 2021 6:57:45 GMT
So sorry to hear about this. I can imagine you feel like you guys can't catch a break. You know the Peas are thinking of you and are always here. Big hugs to you and your family.
|
|
|
|
Post by mikklynn on Aug 24, 2021 12:51:54 GMT
DH has several bone metastasis. He had radiation treatment for them and has no pain. They have not grown since the radiation.
As always, wishing the best for you both.
|
|
|
|
Post by jeremysgirl on Aug 24, 2021 13:17:38 GMT
So, yeah, I'm not caring for myself as I should, at all. I keep on saying I'll try when I get a break, but it doesn't come. Actually, THIS is my little break........
Thank you again for saying what you did, and I'll try to carve out even 15 min a day maybe trying yoga or something to do for myself. xo I want to tell you that the last time my DD was hospitalized for a suicide attempt, she was on a ventilator for 3 days and it took her near two weeks to recover to be able to go to a mental health facility. Those were some trying times for me. I switched off the hospital visits with my mom and one thing I did when I came home was to scrapbook. Just that level of self-care made all the difference in my attitude while I was facing this crisis. You do need some self-care. And I will continue to send prayers. |
|
Deleted
Posts: 0
Nov 23, 2024 19:06:17 GMT
|
Post by Deleted on Aug 24, 2021 13:31:32 GMT
Sending you lots of hugs
|
|
lisaknits
Pearl Clutcher
Posts: 4,539
|
Post by lisaknits on Aug 24, 2021 13:33:09 GMT
Hugs, prayers, and love to you and Gary.
|
|
julie5
Pearl Clutcher
Posts: 3,621
|
Post by julie5 on Aug 24, 2021 14:27:47 GMT
Hugs.
|
|
Deleted
Posts: 0
Nov 23, 2024 19:06:17 GMT
|
Post by Deleted on Aug 24, 2021 15:54:23 GMT
Girl, I’m going to nag you again about self care. Take time to fortify yourself NOW. You know that’s what your DH wants and will need. Too much is riding in your shoulders to neglect yourself. I’m sad about the news, and I’m glad you have people to mentor you if the bone spots start hurting. I’ve taken care of people for whom the pain was horrific. I’m not trying to scare you, but prepare. I know you say he doesn’t deal with pain well, but the point of a good plan is for him not to be in bad pain. You get on top of the pain. But seriously, make a list of things that make YOU feel refreshed and renewed. And get cracking! Thank you. I appreciate honesty. I'll ask his Oncologist about the pain factor and hopefully be able to be on top of it so it doesn't get out of control.
Not sure how to fortify myself these days. I'm feeling weak and overwhelmed. Dealing with my own ongoing terrible pain is bad enough. Spending my days just trying to keep on top of his appointments and write everything down to figure it all out. I've been getting good sleep with my kitty. Hubby sleeps in another room in a big bed alone. He gets better sleep that way. (mental note to get a nanny-cam for the near future). Besides rest, there's really nothing to make me feel refreshed. I'm going-going-going, 24/7 between all of our appointments and being the only driver here. I'll figure it out eventually. For now I have Ensure to drink when I don't have the energy to cook for myself.
|
|
Deleted
Posts: 0
Nov 23, 2024 19:06:17 GMT
|
Post by Deleted on Aug 24, 2021 15:56:04 GMT
DH has several bone metastasis. He had radiation treatment for them and has no pain. They have not grown since the radiation. As always, wishing the best for you both. This sounds very hopeful. Thank you for sharing. DH has this new bone cancer (confirming it after his Friday biopsy), and his liver cancer prognosis is pretty grim. I guess the chemo will try to keep both at bay. I hope so! xo |
|
Deleted
Posts: 0
Nov 23, 2024 19:06:17 GMT
|
Post by Deleted on Aug 24, 2021 16:00:11 GMT
So, yeah, I'm not caring for myself as I should, at all. I keep on saying I'll try when I get a break, but it doesn't come. Actually, THIS is my little break........
Thank you again for saying what you did, and I'll try to carve out even 15 min a day maybe trying yoga or something to do for myself. xo I want to tell you that the last time my DD was hospitalized for a suicide attempt, she was on a ventilator for 3 days and it took her near two weeks to recover to be able to go to a mental health facility. Those were some trying times for me. I switched off the hospital visits with my mom and one thing I did when I came home was to scrapbook. Just that level of self-care made all the difference in my attitude while I was facing this crisis. You do need some self-care. And I will continue to send prayers. I'm so sorry you went through that. I'm all too familiar with that darkness. I have no one to take over my duties; I'm it! And I'm barely able to care for me lately with my own ongoing pain. We have no one here to "spot me" or help. I try to do what I can. I can't seem to even focus on doing a craft or even cleaning my house too much lately. This has left me beyond drained for months now. But, thank you so much for your words. My goal is to get time to sit in the sun for a few hours whenever I can. Haven't done it yet, but it's on my list..... xo |
|
edie3
Drama Llama
Posts: 5,684
|
Post by edie3 on Aug 24, 2021 16:01:45 GMT
I know this isn't the news you wanted to hear. I am so sorry. Hugs and prayers to you and Gary.
|
|
Deleted
Posts: 0
Nov 23, 2024 19:06:17 GMT
|
Post by Deleted on Aug 24, 2021 16:06:30 GMT
Girl, I’m going to nag you again about self care. Take time to fortify yourself NOW. You know that’s what your DH wants and will need. Too much is riding in your shoulders to neglect yourself. I’m sad about the news, and I’m glad you have people to mentor you if the bone spots start hurting. I’ve taken care of people for whom the pain was horrific. I’m not trying to scare you, but prepare. I know you say he doesn’t deal with pain well, but the point of a good plan is for him not to be in bad pain. You get on top of the pain. But seriously, make a list of things that make YOU feel refreshed and renewed. And get cracking! I was going to say the same thing. As you know, I live with chronic pain and back when it all started, my doctor was not good at helping me manage it. When I switched jobs, I switched medical coverage. My new doctors were very helpful and responsive, putting me on time-released morphine that lasts for 12 hours between pills. My previous medication had to be taken every 4 hours, so that gave me multiple times each day and throughout the night that I had to deal with the medication waining and the pain building. I was always anxious as the pain came back, fearing what level it would get to before it was time to take the next pill and having it kick in. It was a constant roller coaster of pain ramping up and subsiding. Now with the 12-hour pills, I take a break-through pain pill an hour before the time-release pill is due. It covers me during the switch over from one pill to the next. My stress over the returning pain has diminished considerable and my life is more normal than it was without the morphine. I know you know about this, but with all you have on your plate, it is easy to let time get away from you. I set alarms so that I don't get busy and screw up my med schedule, keeping the right dose on board at all times. Staying on top of the pain meds has seriously given me a better quality of life. I can recommend using Alexa as a medication timer. With its voice response ability it makes shutting each of the 4 daily alarms so easy. I don't even have to get up off the couch to shut it off. I have 4 weekly medication dispensers and I sit down once a month to fill them all. I used a sharpie to number them and when I get to box 4, I know to go online and order the pain meds again. It is an easy system and keeps me on schedule. It may sound silly, but sticking to a tight pain medication schedule is crucial to staying on top of the pain. If you wait until you feel the pain coming on, you're in trouble because stopping existing pain is harder than preventing pain, if that makes sense. You can use a regular alarm or smart phone of course, I just find Alexa works best for me. Do you have one? What you said makes sense. I"m thinking about my own chronic pain that reached new levels lately. My pain mgmt doctor took months to approve Aimovig for me. It didn't work + it made my vision blurry in my only seeing eye. NOT GOOD. I'm left with just my daily pain meds, which isn't enough to get me thru one day. I get breakthru pain daily. Not sure if I need another type of doctor, but I have no time to find one or go. Hard enough to slip away and go to this pain doctor........ I'm left in awful pain daily now, for months. I try to fight thru it and care for DH and DD's urgent needs. When I can, I just lie down and try to catch a break.
Hoping to be on top of DH's pain when it happens. I'll prepare. My pain meds/routine worked for me for over 10 years, and the 37 years before that I had a grip on it with OTC meds. Thanks for your advice though! xo
|
|
