A failed experiment
Well my little pain experiment was a failure after less than 24 hours, the pain in my abdomen ( I believe it's my liver) woke me up and it's terrible. Back on the Dilaudid.
I dont know what to do or where to turn. Every day is a horror now and I don't want to put my wife through months (oh God let it not be years) of this.
Right now it feels like someone ramming a broomstick into my side. Very pleasant.
Comments
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METAL PIPE!
Lee,
I often describe that as the steel pipe sticking out of the side of my chest, like I was impaled in a traffic accident. I was so worried as I have tried the weening and thinking the pain is from the pills, or they are not needed. It never worked. It is SO hard to get back on top of the pain when I have tried and that is so much worse!
I wish more than anything I could reach through this computer and pull the pain out of you like Joe Black did to the Creole woman in the movie of the same name. I would do it for you. I so empathize with what you are feeling, physically and for Chantal too. I worry for Michelle the same way, she so wants me not to hurt and so badly wants to help and feels so helpless.
YOU ARE NOT ALONE. I know that doesn't take your pain away but it is important because I want you there when I am there. YOU ARE NOT ALONE.
You NEED to call or see another doctor TOMORROW and get some relief and help with this. It is neither acceptable nor normal. YOU deserve better than this dammit.
Try (try) to focus on the good, take MORE Dilaudid as the doctor suggested (YES, that DOES work! I don't care what you think it works take more now!)
I love you and I hate this for you. Relieve the pain. Get some rest when that is accomplished and this will get better, it will not be like this every day. TRUST ME,
IT WILL NOT!!!!!
Call me if you need to I am UP I am here and I am all yours if I can help or just listen!!!
My cell is with me. If you don't have it I will PM it to you at once.
-Eric and Michelle
(BOTH here and available for either of you 24/7) CALL!0 -
chemosmoker said:
METAL PIPE!
Lee,
I often describe that as the steel pipe sticking out of the side of my chest, like I was impaled in a traffic accident. I was so worried as I have tried the weening and thinking the pain is from the pills, or they are not needed. It never worked. It is SO hard to get back on top of the pain when I have tried and that is so much worse!
I wish more than anything I could reach through this computer and pull the pain out of you like Joe Black did to the Creole woman in the movie of the same name. I would do it for you. I so empathize with what you are feeling, physically and for Chantal too. I worry for Michelle the same way, she so wants me not to hurt and so badly wants to help and feels so helpless.
YOU ARE NOT ALONE. I know that doesn't take your pain away but it is important because I want you there when I am there. YOU ARE NOT ALONE.
You NEED to call or see another doctor TOMORROW and get some relief and help with this. It is neither acceptable nor normal. YOU deserve better than this dammit.
Try (try) to focus on the good, take MORE Dilaudid as the doctor suggested (YES, that DOES work! I don't care what you think it works take more now!)
I love you and I hate this for you. Relieve the pain. Get some rest when that is accomplished and this will get better, it will not be like this every day. TRUST ME,
IT WILL NOT!!!!!
Call me if you need to I am UP I am here and I am all yours if I can help or just listen!!!
My cell is with me. If you don't have it I will PM it to you at once.
-Eric and Michelle
(BOTH here and available for either of you 24/7) CALL!
Couldn't have said it better myself. I took a True Blood break after message board surfing for like 4 hours tonight. Now I'm bummed I didn't read a few more posts before I took a break. I'm so sorry I wasn't here to chat. I wouldn't wish that pain on my worst enemy, let alone someone as kind as you. Eric's right-- get to the doc and DEMAND they figure out a new plan. This one sucks. I hope they can find an alternative pain med that doesn't cause so much other crap. 
Thinking of you, always.
Ali
(Dad - Mike, IV)0 -
Hi Eric;chemosmoker said:METAL PIPE!
Lee,
I often describe that as the steel pipe sticking out of the side of my chest, like I was impaled in a traffic accident. I was so worried as I have tried the weening and thinking the pain is from the pills, or they are not needed. It never worked. It is SO hard to get back on top of the pain when I have tried and that is so much worse!
I wish more than anything I could reach through this computer and pull the pain out of you like Joe Black did to the Creole woman in the movie of the same name. I would do it for you. I so empathize with what you are feeling, physically and for Chantal too. I worry for Michelle the same way, she so wants me not to hurt and so badly wants to help and feels so helpless.
YOU ARE NOT ALONE. I know that doesn't take your pain away but it is important because I want you there when I am there. YOU ARE NOT ALONE.
You NEED to call or see another doctor TOMORROW and get some relief and help with this. It is neither acceptable nor normal. YOU deserve better than this dammit.
Try (try) to focus on the good, take MORE Dilaudid as the doctor suggested (YES, that DOES work! I don't care what you think it works take more now!)
I love you and I hate this for you. Relieve the pain. Get some rest when that is accomplished and this will get better, it will not be like this every day. TRUST ME,
IT WILL NOT!!!!!
Call me if you need to I am UP I am here and I am all yours if I can help or just listen!!!
My cell is with me. If you don't have it I will PM it to you at once.
-Eric and Michelle
(BOTH here and available for either of you 24/7) CALL!
Hello Eric;
As a graphic designer, I find your overuse of capitals to be mildly offensive
Ironically, I watched Joe Black just two days ago.. it gave me a craving for peanut butter!
We are going to be meeting with the palliative care team (hopefully) soon, so we should be on the road to more detailed pain management. At this point I don't care if it makes me high, I don't care if I get hooked on it, as long as we can keep the pain AND the nausea under control I'll be a (mildly) happier camper.
Thanks for your support Buddy.
- Lee0 -
Hi Aliadube said:
Couldn't have said it better myself. I took a True Blood break after message board surfing for like 4 hours tonight. Now I'm bummed I didn't read a few more posts before I took a break. I'm so sorry I wasn't here to chat. I wouldn't wish that pain on my worst enemy, let alone someone as kind as you. Eric's right-- get to the doc and DEMAND they figure out a new plan. This one sucks. I hope they can find an alternative pain med that doesn't cause so much other crap.
Thinking of you, always.
Ali
(Dad - Mike, IV)</p>
Well look at you...a week on the board and you're already getting feisty...good for you! Thats what this board is all about.. freedom of knowledge. We've met with at least 20 doctors so far, and they all have differing opinions and abilities. Without CSN we'd be at their mercy and relying on those crappy pamphlets they give you.. "So, you've got cancer.."
Yeah the pain is pretty much over the top. I've just taken my second dilaudid dose in 12 hours and starting to feel some relief...hurrah I say, hurrah!
be well, and hugs to your Dad (or a manly handshake),
Lee0 -
I second Sherriunknown said:This comment has been removed by the Moderator
There is no reason a modern country should have any person in that much pain. Like Sherrie said, the pain has to be managed appropriately and in my post yesterday I said you have to be ahead of the pain once it gets ahold you cannot manage it efficiently and to your comfort. It is terrible to hear the extent of the pain you are now experiencing. How about Fentanyl patches?? Hoping like Sherrie that the palliative care can take care of this and you get some much needed relief. My prayers and good thoughts are with you, Lee and Chantal too. take care,
Donna700 -
Mini HijackLeeinLondon said:Hi Eric;
Hello Eric;
As a graphic designer, I find your overuse of capitals to be mildly offensive
Ironically, I watched Joe Black just two days ago.. it gave me a craving for peanut butter!
We are going to be meeting with the palliative care team (hopefully) soon, so we should be on the road to more detailed pain management. At this point I don't care if it makes me high, I don't care if I get hooked on it, as long as we can keep the pain AND the nausea under control I'll be a (mildly) happier camper.
Thanks for your support Buddy.
- Lee
I didn't know you're a graphic designer! Thought this might give you a good laugh.
http://www.eligr.com/2010/08/why-never-to-ask-favors-from-the-graphic-designers/ Ali 0 -
SORRY LEE I MEANT NO OFFENSELeeinLondon said:Hi Eric;
Hello Eric;
As a graphic designer, I find your overuse of capitals to be mildly offensive
Ironically, I watched Joe Black just two days ago.. it gave me a craving for peanut butter!
We are going to be meeting with the palliative care team (hopefully) soon, so we should be on the road to more detailed pain management. At this point I don't care if it makes me high, I don't care if I get hooked on it, as long as we can keep the pain AND the nausea under control I'll be a (mildly) happier camper.
Thanks for your support Buddy.
- Lee
SORRY LEE I MEANT NO OFFENSE WITH ALL THE CAPITALS!!!!!
LOL0 -
HospiceDonna70 said:I second Sherri
There is no reason a modern country should have any person in that much pain. Like Sherrie said, the pain has to be managed appropriately and in my post yesterday I said you have to be ahead of the pain once it gets ahold you cannot manage it efficiently and to your comfort. It is terrible to hear the extent of the pain you are now experiencing. How about Fentanyl patches?? Hoping like Sherrie that the palliative care can take care of this and you get some much needed relief. My prayers and good thoughts are with you, Lee and Chantal too. take care,
Donna70
Well, much to our surprise, we discovered today that there is indeed hospice care here in Canada. Our case worker was here for a visit today, and mentioned it, as well as some of the services that they can provide for Lee and myself. We are definitely on board for the at home hospice offerings, which seem to involve massage, counselling, hair care, and I don't know what all else. I imagine pain management and whatnot as well. (hope I'm included in the massage bit!!!!) They have sent a referral for us, and we should be hearing from them shortly. They also offer out of home care, but as of this point, we're not interested in having Lee leave the home.
As for the pain management, Lee has been fairly well able to manage his pain, but the side effects from those meds are what seem to be causing the problems with the hot and cold flashes, inability to sleep, nausea, vomiting. These are not being well managed, and hopefully the palliative care doctor which we are seeing on Friday will be a bit more helpful in dealing with this. It may just be that he does not handle the hydromorph contin well, and needs to be switched to something else. We are feeling optimistic that they may be more attentive to our needs. Our oc just never seemed to listen to what we were saying, and there is always a constant stream of resident doctors seeing us, so we just never felt like anyone 'knew' us. So, onwards and upwards, cheers to palliative care!
Chantal0 -
Lee, I am so sorry you areDaisylin said:Hospice
Well, much to our surprise, we discovered today that there is indeed hospice care here in Canada. Our case worker was here for a visit today, and mentioned it, as well as some of the services that they can provide for Lee and myself. We are definitely on board for the at home hospice offerings, which seem to involve massage, counselling, hair care, and I don't know what all else. I imagine pain management and whatnot as well. (hope I'm included in the massage bit!!!!) They have sent a referral for us, and we should be hearing from them shortly. They also offer out of home care, but as of this point, we're not interested in having Lee leave the home.
As for the pain management, Lee has been fairly well able to manage his pain, but the side effects from those meds are what seem to be causing the problems with the hot and cold flashes, inability to sleep, nausea, vomiting. These are not being well managed, and hopefully the palliative care doctor which we are seeing on Friday will be a bit more helpful in dealing with this. It may just be that he does not handle the hydromorph contin well, and needs to be switched to something else. We are feeling optimistic that they may be more attentive to our needs. Our oc just never seemed to listen to what we were saying, and there is always a constant stream of resident doctors seeing us, so we just never felt like anyone 'knew' us. So, onwards and upwards, cheers to palliative care!
Chantal
Lee, I am so sorry you are having so much difficulty with the pain meds.
Hopefully they can get you on a different med for your pain without all the side effects.
Julie0 -
HospiceDaisylin said:Hospice
Well, much to our surprise, we discovered today that there is indeed hospice care here in Canada. Our case worker was here for a visit today, and mentioned it, as well as some of the services that they can provide for Lee and myself. We are definitely on board for the at home hospice offerings, which seem to involve massage, counselling, hair care, and I don't know what all else. I imagine pain management and whatnot as well. (hope I'm included in the massage bit!!!!) They have sent a referral for us, and we should be hearing from them shortly. They also offer out of home care, but as of this point, we're not interested in having Lee leave the home.
As for the pain management, Lee has been fairly well able to manage his pain, but the side effects from those meds are what seem to be causing the problems with the hot and cold flashes, inability to sleep, nausea, vomiting. These are not being well managed, and hopefully the palliative care doctor which we are seeing on Friday will be a bit more helpful in dealing with this. It may just be that he does not handle the hydromorph contin well, and needs to be switched to something else. We are feeling optimistic that they may be more attentive to our needs. Our oc just never seemed to listen to what we were saying, and there is always a constant stream of resident doctors seeing us, so we just never felt like anyone 'knew' us. So, onwards and upwards, cheers to palliative care!
Chantal
Chantal,
So glad to hear you will be getting some help from hospice. At our visit to MD Anderson in February we were referred to a pain management doctor and that has made a world of difference. They prescribed several drugs for Rickie to try to deal with the pain he was having from the mets to the bones. The one that worked the best with the fewest side effects has been the fentanyl patch. He started out with 50 mg and has since progressed to 75 mg and only occasionally has to take hydrocodone for breakthrough pain. He was reluctant to take these drugs at first, but when they explained that once you get the pain under control everything else gets better, he went with it. Even though he changes the patch every 72 hours he never appears to be "drugged". So far the biggest side effect seems to be constipation, and he works with. I am sure you feel Friday will not come soon enough! Hang in there,
Cheryl0 -
This comment has been removed by the ModeratorDaisylin said:Hospice
Well, much to our surprise, we discovered today that there is indeed hospice care here in Canada. Our case worker was here for a visit today, and mentioned it, as well as some of the services that they can provide for Lee and myself. We are definitely on board for the at home hospice offerings, which seem to involve massage, counselling, hair care, and I don't know what all else. I imagine pain management and whatnot as well. (hope I'm included in the massage bit!!!!) They have sent a referral for us, and we should be hearing from them shortly. They also offer out of home care, but as of this point, we're not interested in having Lee leave the home.
As for the pain management, Lee has been fairly well able to manage his pain, but the side effects from those meds are what seem to be causing the problems with the hot and cold flashes, inability to sleep, nausea, vomiting. These are not being well managed, and hopefully the palliative care doctor which we are seeing on Friday will be a bit more helpful in dealing with this. It may just be that he does not handle the hydromorph contin well, and needs to be switched to something else. We are feeling optimistic that they may be more attentive to our needs. Our oc just never seemed to listen to what we were saying, and there is always a constant stream of resident doctors seeing us, so we just never felt like anyone 'knew' us. So, onwards and upwards, cheers to palliative care!
Chantal0 -
I'm with Sherriunknown said:This comment has been removed by the Moderator
Hi Lee and Chantal,
I'm with Sherri. The Hospice nurses would call and TELL (caps intended!!) the oncologist what they wanted. It worked very well. That's their specialty, pain and symptom management. I'm so hoping that you find relief. And the hospice nurses were right on top of dosage, switching up the meds quickly for the fastest symptom management. They are the best.
Jo-Ann0 -
pain management
Double the pain meds, do what you need to do. That's the lesson I just learned. I can't remember if you're also taking Atavan, but if not, try taking one with every pain pill. It really does a thing on nausea. It's also called Lorazapam.
We called my pain in the side Mack the Knife. Occasionally, it was so extensive we referred to it as "Jaws". Mine has no definitive cause. But whatever, pain relief is key. And it's out there. YOu just have to find the doctor willing to go all out and work with you on it.
Lu0
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