do I take him to the ER?

CJ21

My dad is entering his 6th week of chemotherapy and radiation. He's had a really rough go of it in general- lost 40 pounds, can't eat, lots of pain/burning/bleeding and bli.sters from the radiation, etc. The latest development is that his arm started swelling up- the arm closest to his port. According to my step mom they assessed him yesterday, looked for a blood clot, couldn't find one and released him. I spoke with him on the phone last night and he is not in a good place. In part, the pain meds are responsible for this. They seem to make him crabby (well, anyone going through this suffering has every right to be crabby, but if you knew my dad you would know what I mean- he is the kindest, sweetest man- but when on the pain meds sounds like an angry drunk.)

I'm going to be his primary care person tomorrow as my stepmom just needs a break. On the phone he was telling me he doesn't think he can go one more week. He is in so much pain. At what point do I take him to the ER? We have never been through this before so I have no "normal" to measure the amount of suffering he is experiencing.  It just seems more severe than it should be. Plus my stepmom mentioned that he gained 24 pounds of the weight he had lost in the past 8 days but hasn't been eating, so it seems like it might be water weight.

Any feedback would be appreciated.

mp327

CJ21

I just saw your post and OMG, I am so sorry your dad is in such bad shape.  Have you contacted both his radiation oncologist and his medical oncologist to ask what they want him to do, such as go to the ER?  I realize it's the weekend, but at least one of them should have a doctor on call.  If you can't get in touch with anyone, I would say yes, take him to the ER.  The arm swelling would be a big concern for me because of a potential blood clot, even though one was not found yesterday.  Did they do an ultrasound or anything?  Also, the fact that he lost so much weight then rapidly gained a large amount of it back in just a short time is a concern.  I would definitely get him checked out ASAP. 

My last week of treatment was absolutely horrible.  I am so sorry he is having such a rough time, but hopefully, getting him to the ER will result in some relief.  Please let me know how things go.  Sending prayers.

Martha

CJ21

mp327 said:

CJ21

I just saw your post and OMG, I am so sorry your dad is in such bad shape.  Have you contacted both his radiation oncologist and his medical oncologist to ask what they want him to do, such as go to the ER?  I realize it's the weekend, but at least one of them should have a doctor on call.  If you can't get in touch with anyone, I would say yes, take him to the ER.  The arm swelling would be a big concern for me because of a potential blood clot, even though one was not found yesterday.  Did they do an ultrasound or anything?  Also, the fact that he lost so much weight then rapidly gained a large amount of it back in just a short time is a concern.  I would definitely get him checked out ASAP. 

My last week of treatment was absolutely horrible.  I am so sorry he is having such a rough time, but hopefully, getting him to the ER will result in some relief.  Please let me know how things go.  Sending prayers.

Martha

Thanks- I just spoke with my

Thanks- I just spoke with my stepmom again and we are going to take him to the ER. It's all complicated because he lives in a small town so his radiation dr. is in a town one hour away and his main oncologist is right here in town but they belong to two separate medical system. I can not get over how the care here works- or doesn't work at all. He started doctoring for his symptoms last April and even though he reported that his dad died of colon cancer nobody even did a colonoscopy until August. They all kept saying it was hemmhoroids and that it couldn't be cancer because he had had a clear colonoscopy within the past three years. It's infuriating.

We are taking him in in a bit- we just wanted to get our "plan of attack" down because they have patted us on the head and sent us away one too many times.

Thanks so much for your response and care!

eihtak

CJ21 said:

Thanks- I just spoke with my

Thanks- I just spoke with my stepmom again and we are going to take him to the ER. It's all complicated because he lives in a small town so his radiation dr. is in a town one hour away and his main oncologist is right here in town but they belong to two separate medical system. I can not get over how the care here works- or doesn't work at all. He started doctoring for his symptoms last April and even though he reported that his dad died of colon cancer nobody even did a colonoscopy until August. They all kept saying it was hemmhoroids and that it couldn't be cancer because he had had a clear colonoscopy within the past three years. It's infuriating.

We are taking him in in a bit- we just wanted to get our "plan of attack" down because they have patted us on the head and sent us away one too many times.

Thanks so much for your response and care!

CJ21.....

Hi, I am so very sorry for the situation you are all in! This treatment has challenges for both patient and caregivers as well!! 

My reccommendation is the same as Martha has said and I am glad to see you are getting your dad into ER. Know that the pain however CAN be excruciating and it is difficult for me to compare to any other I have ever had! I was curious what type of pain management your poor dad is on??? By the end of treatment and for a couple weeks after I was taking a time released high dose of oxycontin 2x's per day with a fast acting oxycodone in between for break-thru pain.....these meds do not generally cause feelings of "anger" in someone who is normally not,.....not even in this situation. Although we do all react differently.

I will have your dad (and you and mom) in my thoughts for some helpful answers as you continue. Please keep us posted.

katheryn

CJ21

eihtak said:

CJ21.....

Hi, I am so very sorry for the situation you are all in! This treatment has challenges for both patient and caregivers as well!! 

My reccommendation is the same as Martha has said and I am glad to see you are getting your dad into ER. Know that the pain however CAN be excruciating and it is difficult for me to compare to any other I have ever had! I was curious what type of pain management your poor dad is on??? By the end of treatment and for a couple weeks after I was taking a time released high dose of oxycontin 2x's per day with a fast acting oxycodone in between for break-thru pain.....these meds do not generally cause feelings of "anger" in someone who is normally not,.....not even in this situation. Although we do all react differently.

I will have your dad (and you and mom) in my thoughts for some helpful answers as you continue. Please keep us posted.

katheryn

Thanks, Katheryn. I think at

Thanks, Katheryn. I think at this point part of the problem is just the mental game of it all. He feels such excruciating pain that he is having trouble imagining how he will make it through five more radiation treatments. I'm wondering, can anyone give me a timetable for when you started feeling better post-treatment? I think I need to help give him a "finish line" in his mind. He has felt awful for so long I think he just can't imagine the other side and what he is fighting for anymore. Did you all feel that way?

mp327

CJ21

I hope the ER visit resulted in getting some answers and some pain relief for your dad.  Please update when you are able.  I did not take as much pain medication as I should have during treatment and I now realize what a mistake that was.  I hope your dad will be given something that will help significantly.  As for how long after treatment ended when I began feeling better, it was about 10 days.  I know that sounds like an eternity, but just knowing that I was done with treatment and that there would not be any further damage helped me tremendously to keep moving towards recovery.  I am sending prayers for your dad and your mom and for you too.

Martha

CJ21

mp327 said:

CJ21

I hope the ER visit resulted in getting some answers and some pain relief for your dad.  Please update when you are able.  I did not take as much pain medication as I should have during treatment and I now realize what a mistake that was.  I hope your dad will be given something that will help significantly.  As for how long after treatment ended when I began feeling better, it was about 10 days.  I know that sounds like an eternity, but just knowing that I was done with treatment and that there would not be any further damage helped me tremendously to keep moving towards recovery.  I am sending prayers for your dad and your mom and for you too.

Martha

We did take him to the ER.

We did take him to the ER. They were able to give him injected dilaudid which got him to a pain level that was at least tolerable. Once we got home I made sure he stayed on top of every pain pill allowable and it has been better. He is still in pain, but at least he's not rocking on the floor. : (

I'm making him a chart so he knows exactly when to take what. They hadn't done that yet and it makes me wonder if things might go much better if he just takes everything on the hour when he can whether he feels like he needs it or not. Just five days left of radiation. Thanks for your prayers!

horsepad

I am sorry your dad has to go

I am sorry your dad has to go through this.  I had terrible burns and alot of pain.  The worse of the pain started at the end of treatment.  I was on different pain pills that didn't help.  My last pain meds were morphine and that helped me alot.    I felt like your dad.  The pain was so terrific, I didn't think I could tolerate another day.  I took my pain pills faithfully.  It will get better, he's in the worst of pain now.

mp327

CJ21

I'm glad your father has gotten some relief from his pain.  You are absolutely right--he needs to take the pain pills on a schedule, whether he feels he needs another dose or not, so he can stay ahead of the pain.  I hope he can get through the next 5 days and then be in recovery mode.  He will probably not feel better for a few days, but it's important to recognize each and every little improvement.  I wish him all the very best.

Martha

CJ21

horsepad said:

I am sorry your dad has to go

I am sorry your dad has to go through this.  I had terrible burns and alot of pain.  The worse of the pain started at the end of treatment.  I was on different pain pills that didn't help.  My last pain meds were morphine and that helped me alot.    I felt like your dad.  The pain was so terrific, I didn't think I could tolerate another day.  I took my pain pills faithfully.  It will get better, he's in the worst of pain now.

Thanks for taking the time to

Thanks for taking the time to write this. I can't tell you how comforting it is to hear that this is "normal" even if that "normal" is horrific. I'm sorry you had to go through that. It's not fair that anyone has to go through this at all. I wish I could straight out ask for morphine for him, but in this small town illegal drugs have been a HUGE issue and they wouldn't take kindly to anyone asking for anything pain-killerish. At one point in all his doctoring they actually denied him pain meds at all because a surgeon had suggested a treatment and he turned that treatment down BECAUSE he was in too much pain to imagine going through it.  Then they said he had "denied treatment" so he couldn't have pain meds. How illogical is that? It's really difficult to put all my feelings regarding the treatment he has received aside because so many mistakes have been made. So. Many. Mistakes. Sorry to vent.  I know that's not really the point here. I probably need to go find a therapist. Or a lawyer. Or both.

CJ21

mp327 said:

CJ21

I'm glad your father has gotten some relief from his pain.  You are absolutely right--he needs to take the pain pills on a schedule, whether he feels he needs another dose or not, so he can stay ahead of the pain.  I hope he can get through the next 5 days and then be in recovery mode.  He will probably not feel better for a few days, but it's important to recognize each and every little improvement.  I wish him all the very best.

Martha

Thank you! I'm happy to say

Thank you! I'm happy to say he is sleeping soundly- so soundly that he is snoring. I never knew snoring would be such music to my ears; at least when he's this sound asleep I know the pain must be tolerable. Thanks again for your support. It feels so good to "talk" to someone who knows exactly what this is like.

mp327

CJ21

I'm so happy to hear he is feeling better!  I hope the next 5 days go fast for him and that he has a speedy recovery!