need words of hope
Life Goes On
Join Date: Jul 2012
Location: Baltimore, Maryland
Posts: 6,069
Hawk is right - there are people who can help arrange transportation - all you need do is ask your doctor or nurse. They may set you up with a person (sometimes known as a "navigator") as a matter of course, but if that doesn't happen, do speak up. Upon arrival at any medical facility, you should be able to ask for assistance with getting around the building. They should have people for that. It works out even better if you arrange that with the scheduling person before you arrive.
A word about the medication: I'm not a doctor, but I was in the pharmacy business for a very long time and have had some personal experiences with pain meds. Taking too much Advil cost one of my kids a trip to the hospital for horrible stomach pain, so taking "lots every four hours" sounds like it may actually worsen your pain over the long haul. One method I've found effective with bad pain is to alternate - Advil every six hours as needed, with Tylenol in between every four hours. I don't know about you, but I'm not an equal opportunity addict. I've never been tempted to overdo narcotics (or anything aside from booze), so would definitely take the stronger medication as needed and only as prescribed. Only you can know if that's a danger to you, but please don't think that taking narcotic medications for legitimate pain is an automatic pass to new addiction.
It's all about balance...
How did your appointments go?
O
A word about the medication: I'm not a doctor, but I was in the pharmacy business for a very long time and have had some personal experiences with pain meds. Taking too much Advil cost one of my kids a trip to the hospital for horrible stomach pain, so taking "lots every four hours" sounds like it may actually worsen your pain over the long haul. One method I've found effective with bad pain is to alternate - Advil every six hours as needed, with Tylenol in between every four hours. I don't know about you, but I'm not an equal opportunity addict. I've never been tempted to overdo narcotics (or anything aside from booze), so would definitely take the stronger medication as needed and only as prescribed. Only you can know if that's a danger to you, but please don't think that taking narcotic medications for legitimate pain is an automatic pass to new addiction.
It's all about balance...
How did your appointments go?
O
Member
Thread Starter
Join Date: Jan 2014
Posts: 3,293
Originally Posted by Obladi 
Hawk is right - there are people who can help arrange transportation - all you need do is ask your doctor or nurse. They may set you up with a person (sometimes known as a "navigator") as a matter of course, but if that doesn't happen, do speak up. Upon arrival at any medical facility, you should be able to ask for assistance with getting around the building. They should have people for that. It works out even better if you arrange that with the scheduling person before you arrive.
A word about the medication: I'm not a doctor, but I was in the pharmacy business for a very long time and have had some personal experiences with pain meds. Taking too much Advil cost one of my kids a trip to the hospital for horrible stomach pain, so taking "lots every four hours" sounds like it may actually worsen your pain over the long haul. One method I've found effective with bad pain is to alternate - Advil every six hours as needed, with Tylenol in between every four hours. I don't know about you, but I'm not an equal opportunity addict. I've never been tempted to overdo narcotics (or anything aside from booze), so would definitely take the stronger medication as needed and only as prescribed. Only you can know if that's a danger to you, but please don't think that taking narcotic medications for legitimate pain is an automatic pass to new addiction.
It's all about balance...
How did your appointments go?
O
A word about the medication: I'm not a doctor, but I was in the pharmacy business for a very long time and have had some personal experiences with pain meds. Taking too much Advil cost one of my kids a trip to the hospital for horrible stomach pain, so taking "lots every four hours" sounds like it may actually worsen your pain over the long haul. One method I've found effective with bad pain is to alternate - Advil every six hours as needed, with Tylenol in between every four hours. I don't know about you, but I'm not an equal opportunity addict. I've never been tempted to overdo narcotics (or anything aside from booze), so would definitely take the stronger medication as needed and only as prescribed. Only you can know if that's a danger to you, but please don't think that taking narcotic medications for legitimate pain is an automatic pass to new addiction.
It's all about balance...
How did your appointments go?
O
Member
Thread Starter
Join Date: Jan 2014
Posts: 3,293
Actually I'm a pretty lucky guy. My pension and social security is enough to pay my bills since working right now is impossible between all the appointments and being so weak. And I have some money saved if I need it. Don't know what I would do if I needed to work to pay my bills. John
Member
Join Date: Oct 2013
Posts: 11,417
Being able to concentrate on recovery instead of worrying about covering bills is a blessing— one you earned through the hard work of a lifetime. Your focus on gratitude at what you have is inspiring and helpful not just to you but all of us.
I think it is a good idea to arrange in advance with your doctor / hospital for someone to get you around in the building before your first appointment next week, as O suggested. Four appointments sounds exhausting even for someone at full health
.
I also got a temporary parking pass to hang from my rear view mirror from the hospital whenever I was taking my mom (who had severe breathing issues) that allowed us to park close to entrance. This is invaluable if you are going there with any frequency. Maybe check on that too—let them know you are driving yourself and not getting dropped off by someone else. Makes a difference.
I think it is a good idea to arrange in advance with your doctor / hospital for someone to get you around in the building before your first appointment next week, as O suggested. Four appointments sounds exhausting even for someone at full health
.I also got a temporary parking pass to hang from my rear view mirror from the hospital whenever I was taking my mom (who had severe breathing issues) that allowed us to park close to entrance. This is invaluable if you are going there with any frequency. Maybe check on that too—let them know you are driving yourself and not getting dropped off by someone else. Makes a difference.
Member
Join Date: Jan 2020
Location: NC
Posts: 5,154
Originally Posted by 2muchpain
Actually I'm a pretty lucky guy. My pension and social security is enough to pay my bills since working right now is impossible between all the appointments and being so weak. And I have some money saved if I need it. Don't know what I would do if I needed to work to pay my bills. John
So Awesome you still feel it!
Definitely the right mindset for this battle.
Keep fighting!
Member
Thread Starter
Join Date: Jan 2014
Posts: 3,293
Originally Posted by MantaLady
Sorry to hear your diagnosis, I am going through chemo at the moment and wishing you all the best xx
Member
Thread Starter
Join Date: Jan 2014
Posts: 3,293
Originally Posted by Hawkeye13
Being able to concentrate on recovery instead of worrying about covering bills is a blessing— one you earned through the hard work of a lifetime. Your focus on gratitude at what you have is inspiring and helpful not just to you but all of us.
I think it is a good idea to arrange in advance with your doctor / hospital for someone to get you around in the building before your first appointment next week, as O suggested. Four appointments sounds exhausting even for someone at full health.
I also got a temporary parking pass to hang from my rear view mirror from the hospital whenever I was taking my mom (who had severe breathing issues) that allowed us to park close to entrance. This is invaluable if you are going there with any frequency. Maybe check on that too—let them know you are driving yourself and not getting dropped off by someone else. Makes a difference.
I think it is a good idea to arrange in advance with your doctor / hospital for someone to get you around in the building before your first appointment next week, as O suggested. Four appointments sounds exhausting even for someone at full health
.I also got a temporary parking pass to hang from my rear view mirror from the hospital whenever I was taking my mom (who had severe breathing issues) that allowed us to park close to entrance. This is invaluable if you are going there with any frequency. Maybe check on that too—let them know you are driving yourself and not getting dropped off by someone else. Makes a difference.
Meanwhile, I am holding off on taking the oxycodone for the pain. They didn't give me much of course. I'll only take it if the pain gets unbearable. I'm looking into buying pain pills on line if I run out but that is a last resort option. Just trying to plan ahead. Doctors can and will do so much. Have a good one, John
Life Goes On
Join Date: Jul 2012
Location: Baltimore, Maryland
Posts: 6,069
Please don't go to the internet for pills, John! Why would you do that?? (Isn't that just like squirreling away an extra bottle of booze in case you can't get to the store?) The doctors will help you to make sure your pain is managed. You should definitely be sure to talk about this when you see them. Tell them about your own history with alcohol. They will give you advice on when the pain is "bad enough" that you should take the oxycontin and they will also be able to help you to watch for signs of addiction.
I am concerned about your insistence that the pain has to be unbearable before you take your medication as prescribed. And I'm real concerned that you are thinking about a secondary source for meds you're not even taking yet. There are on-call professionals at the VA. Maybe give them a call today to ask for their guidance and support? You're worth it. You won't be 'bothering' them - they get paid a big chunk of change for on-call duty.
O
I am concerned about your insistence that the pain has to be unbearable before you take your medication as prescribed. And I'm real concerned that you are thinking about a secondary source for meds you're not even taking yet. There are on-call professionals at the VA. Maybe give them a call today to ask for their guidance and support? You're worth it. You won't be 'bothering' them - they get paid a big chunk of change for on-call duty.
O
Member
Thread Starter
Join Date: Jan 2014
Posts: 3,293
Originally Posted by Obladi
Please don't go to the internet for pills, John! Why would you do that?? (Isn't that just like squirreling away an extra bottle of booze in case you can't get to the store?) The doctors will help you to make sure your pain is managed. You should definitely be sure to talk about this when you see them. Tell them about your own history with alcohol. They will give you advice on when the pain is "bad enough" that you should take the oxycontin and they will also be able to help you to watch for signs of addiction.
I am concerned about your insistence that the pain has to be unbearable before you take your medication as prescribed. And I'm real concerned that you are thinking about a secondary source for meds you're not even taking yet. There are on-call professionals at the VA. Maybe give them a call today to ask for their guidance and support? You're worth it. You won't be 'bothering' them - they get paid a big chunk of change for on-call duty.
O
I am concerned about your insistence that the pain has to be unbearable before you take your medication as prescribed. And I'm real concerned that you are thinking about a secondary source for meds you're not even taking yet. There are on-call professionals at the VA. Maybe give them a call today to ask for their guidance and support? You're worth it. You won't be 'bothering' them - they get paid a big chunk of change for on-call duty.
O
Life Goes On
Join Date: Jul 2012
Location: Baltimore, Maryland
Posts: 6,069
Ok, I'm a former pharmacy technician who supports clinicians in the world of cancer treatment. If the prescription says take twice a day for five days, that's what they want you to do.
They probably wrote the prescription for five days because that will be enough to get you through until your first appointment when they will do a full assessment. At that point, they will feel that they have enough familiarity with you to be able to write a prescription for the appropriate medications and a proper schedule for taking them. They may decide to only write for 5 days of pain meds at a time until they are sure you are taking them responsibly. If so, that would likely be due to the oversight the VA put in place to comply with the government's (too late and not entirely practical) response to the opioid crisis. I promise - no oncologist worth their salt is going to let you suffer any more than you have to.
I'm 100% sure that doctors intend for us to take medications as they are prescribed. But I also realize that I'm just a person on the internet, so please put a call in today to confirm this with a person on staff at your medical center if I'm you're not convinced. Anticipating pain is a major stressor and can actually make the pain worse.
xo
O
They probably wrote the prescription for five days because that will be enough to get you through until your first appointment when they will do a full assessment. At that point, they will feel that they have enough familiarity with you to be able to write a prescription for the appropriate medications and a proper schedule for taking them. They may decide to only write for 5 days of pain meds at a time until they are sure you are taking them responsibly. If so, that would likely be due to the oversight the VA put in place to comply with the government's (too late and not entirely practical) response to the opioid crisis. I promise - no oncologist worth their salt is going to let you suffer any more than you have to.
I'm 100% sure that doctors intend for us to take medications as they are prescribed. But I also realize that I'm just a person on the internet, so please put a call in today to confirm this with a person on staff at your medical center if I'm you're not convinced. Anticipating pain is a major stressor and can actually make the pain worse.
xo
O
Member
Thread Starter
Join Date: Jan 2014
Posts: 3,293
Hi guys!! Just wanted to stop by to say hello. Lots going on. Have many appointments next week. Have a consult appointment next Tuesday to go over test results and come up with a plan. One doctor told me it looks like the cancer has not spread to my brain, lungs and I think the liver. She said right now it looks like the cancer hasn't spread outside the pancreas so it might be possible to have the tumor removed and I would be cancer free, but I know that possibility is pretty low. I think she was just trying to give me some hope. Don't know when chemo starts yet. Was told once getting chemo, that things are gonna get tough. Doctors concerned that I live alone and have no local support during that time. They do provide both in and outpatient services. Pretty hard staying positive because no matter how I look at it, it just doesn't sound good. Still in a lot of pain, tired all the time. Doctor said they will probably change my pain meds to something that lasts all day. That would help. Hopefully, they will have a clearer idea of what my life expectancy will be next Tuesday. Pancreatic cancer is almost always a death sentence. Just a question of when. Sorry guys, just feeling a bit down tonight, but coming here always helps. John
Glad to see your post this morning and sending support.Member
Join Date: Oct 2013
Posts: 11,417
I think you beat it once you can do it again John.
The lack of local support worries me though—my mom got daily home helpers / nurse support after hospital for some time.
Any options like that, or short term live-in care at rehab?
The lack of local support worries me though—my mom got daily home helpers / nurse support after hospital for some time.
Any options like that, or short term live-in care at rehab?
Member
Thread Starter
Join Date: Jan 2014
Posts: 3,293
Originally Posted by Hawkeye13
I think you beat it once you can do it again John.
The lack of local support worries me though—my mom got daily home helpers / nurse support after hospital for some time.
Any options like that, or short term live-in care at rehab?
The lack of local support worries me though—my mom got daily home helpers / nurse support after hospital for some time.
Any options like that, or short term live-in care at rehab?
Member
Join Date: Oct 2013
Posts: 11,417
Hope you had a pain-free day John and built up a little strength with rest. Can you order in some food for tomorrow or heat up something easy? If you are hurting please use pain meds as directed and let them know—sleep is so important but nearly impossible with too much pain to manage—
Looking forward to your update Tuesday—do just pull up to the door and have them either move car or give you a sticker to park there. No major walking!
Looking forward to your update Tuesday—do just pull up to the door and have them either move car or give you a sticker to park there. No major walking!
Currently Active Users Viewing this Thread: 1 (0 members and 1 guests)
