Super Scared... please help.

TracyP

My dad (age 60) was diagnosed with stage 3b lung cancer on Dec 8th 2009. The tumor is in his left lung and also in his lymph nodes in his chest. The tumor is also pushing on his vocal cords and his voice disappered almost instantly.
Anyways, he has been undergoing radiation for 5mins a day/ 5 days a week for approx 3 weeks. He has 8 more radiation treatments to go. He also has had Chemo at the same time: monday 6 hrs. Tues-Fri 2 hrs. Mon 6 hours again. Then a break for 3 days and has one for 6 day treatment like that to go starting this monday. Problem is as of this weekend he is in EXTREME pain to the point of being constantly doubled over, crying and unable to eat or drink anything!!!
I'm terrified. He hasnt eaten much in the past week and now refuses to because it hurts so bad. We would like him to go to the hospital to atleast recieve fluids but he refuses. He has become disoriented and confused, can barely walk or talk and cries out in pain every 5 mins tops! Please, I'm only 26 and havent had my dad for nearly long enough! Please, is there any hope?
He has pain patches, anti nasuea meds, oxycodone, magic mouthwash, anti anxiety meds, bottles of maalox, mylanta and prilocec otc. NOTHING IS WORKING! I'm afraid that he's going to give up and stop treatment. He only has 8 more days of radiation and chemo left but he looks like he's losing this battle.
Oh please help, I'm soooo scared words cant even describe it!

congoody

please help
dear TracyP - if your Dad is disoriented and confused, then he cannot make a sensible medical decision for himself at this point and perhaps it is time to get him to hospital - --for proper pain management,nutritional support if he is not eating or drinking,and for directions for you and for his caregivers - sounds like you need more help girl - it is there for you - ask for home health or hospice - ask for specific instructions - ask for the number of someone you can call when you are home with him so you do not have to feel this helpless and alone - you are not - good luck and let us know how you are both doing ----connie.

TracyP

congoody said:

please help
dear TracyP - if your Dad is disoriented and confused, then he cannot make a sensible medical decision for himself at this point and perhaps it is time to get him to hospital - --for proper pain management,nutritional support if he is not eating or drinking,and for directions for you and for his caregivers - sounds like you need more help girl - it is there for you - ask for home health or hospice - ask for specific instructions - ask for the number of someone you can call when you are home with him so you do not have to feel this helpless and alone - you are not - good luck and let us know how you are both doing ----connie.

Hi Connie,
Thanks for your
Hi Connie,
Thanks for your input. I'm definetly not alone, we have an amazing family support group between my mom, husband, sister and brother in law. The problem is that as of Friday the chemo nurse checked my dad's blood levels and said everything looks good to continue treatment on Monday even though they were aware of our concerns about his nourishment. My mom plans on taking him on Monday to radiation to discuss with them our concerns again. He has been driving himself to treatment up until now.
I think that he thinks going to the hospital is giving into the cancer and giving up. I dont feel that way at all but it's also not my body, it's his. I will accept whatever decisions he makes but I cant watch him suffer like this.

nanaof7

TracyP said:

Hi Connie,
Thanks for your
Hi Connie,
Thanks for your input. I'm definetly not alone, we have an amazing family support group between my mom, husband, sister and brother in law. The problem is that as of Friday the chemo nurse checked my dad's blood levels and said everything looks good to continue treatment on Monday even though they were aware of our concerns about his nourishment. My mom plans on taking him on Monday to radiation to discuss with them our concerns again. He has been driving himself to treatment up until now.
I think that he thinks going to the hospital is giving into the cancer and giving up. I dont feel that way at all but it's also not my body, it's his. I will accept whatever decisions he makes but I cant watch him suffer like this.

pain
is it the pain medicine making him disorientated? as far as the not wanting to eat, I know that when I was going through radiation there came a time when all I could eat was otter pops everything else was so painful that I really thought if this is what it was going to be like I would rather die. I know that sounds terrible but the pain was so severe when I swallowed that I couldn't eat or drink. 'the pain shot right through my neck and head. let the drs. know what is happining with your dad it was the radiation to the esophagus that was the problem I feel so sorry for him, please let us know how things turn out.

augigi

nanaof7 said:

pain
is it the pain medicine making him disorientated? as far as the not wanting to eat, I know that when I was going through radiation there came a time when all I could eat was otter pops everything else was so painful that I really thought if this is what it was going to be like I would rather die. I know that sounds terrible but the pain was so severe when I swallowed that I couldn't eat or drink. 'the pain shot right through my neck and head. let the drs. know what is happining with your dad it was the radiation to the esophagus that was the problem I feel so sorry for him, please let us know how things turn out.

What sort of pain does he
What sort of pain does he have? Does he have any quick-acting pain medicine? Oxycontin is sustained-release and doesn't kick in fast. Maybe he needs some oral morphine? Agree to get the number of palliative care people so you can call them - they've helped me at 3am when I didn't know what to do with my mother.

cobra1122

TracyP said:

Hi Connie,
Thanks for your
Hi Connie,
Thanks for your input. I'm definetly not alone, we have an amazing family support group between my mom, husband, sister and brother in law. The problem is that as of Friday the chemo nurse checked my dad's blood levels and said everything looks good to continue treatment on Monday even though they were aware of our concerns about his nourishment. My mom plans on taking him on Monday to radiation to discuss with them our concerns again. He has been driving himself to treatment up until now.
I think that he thinks going to the hospital is giving into the cancer and giving up. I dont feel that way at all but it's also not my body, it's his. I will accept whatever decisions he makes but I cant watch him suffer like this.

Your dad
I understand your feelings about watching your dad suffer and with everything else that he and your family have been going through.
I have suffered some delusions and mental confusion brought on by the medication and by the chemo, if you read my bio you will understand. My Docs had to be talked to rather abruptly to change my meds and rethink the chemo treatment levels. I have a very complicated health status, so things finally got where we had to stop the chemo, tho it did buy me more time, it took a toll on my body. (but I would do it again).
But think things through as far as what he wants and what everyone else wants, quality or quanity of life. He has a chance to live for time still, many have last years, as myself I am a 2+yr survivor, but my family knows my wishes and tho they sometimes disagree, they support my decisions.
No one can tell anyone forsure how long, I have outlived every Prognosis I have been given, even now I am on Hospice at Home, the best thing we could have done because they have been a God send for us, they gave me 6 months in Jan 09 and I about to celebrate a year on Hospice.
I wish I could give you some golden answer to make everything alright, but there is none.
We are all born in this life to eventually die, but it how we live that defines us, and even now my wife and I cherish everyday and life it to the fullest. The future is just that the future and we cant live in it, we can live in the here and now and cherish the time we have with our children and grandchildren.
Your Dad needs all the support and positive input he can get, and he needs to realize that he is here now and to love this time, there is always Hope, and you all need to live today, tomorrow will be here soon enough.

Our Prayers and Best Wishes to Your Dad, You,Your Family,and everyone else,
Dan(cobra1122) and Margi Harmon

soccerfreaks

Pain Management
Even if dad is in a bad way diagnostically, I would suggest that if his doctors are offering treatment of the kind described then they have hope that dad can, at the very least, live through this or with this for a sufficient amount of time to make the treatment worthwhile. After all, his doctors know that chemotherapy and radiation tend to degradate living conditions, implying, I hope, that they would only offer such treatment if they thought it promised some hope of improvement in quality and/or quantity of life.

As has been indicated, pain management is a critical component of survivorship. If dad is in excruciating pain, he is less likely to pursue options that would assist him in moving forward. So, it is imperative that his doctors find ways to reduce or eliminate the pain while allowing him to enjoy a certain level of quality in his daily life, even if not like he was formerly used to.

I would say, based on your narrative, that management of dad's pain needs to be as high a priority as cancer treatment right now, because it seems that dad will quit the treatment if the pain is not alleviated. His doctors need to be advised of his problems with pain and they need to be alerted that, frankly, pain may end up killing him rather than cancer if they do not correct this (which is to say, he will probably quit the treatment if the pain persists).

Pain management is often a puzzle for doctors because we are so different from one another. Oxycontin works for many folks, but for me it was like M&Ms: it did nothing. Personally, I found the fentanyl patch to be the best of my pain meds. But, again, dad's docs will need to base their decisions on dad's health, among other things.

Still, it should be at the top of their list of things to do for dad, in my non-medical opinion.

Best wishes to dad and his family.

Take care,

Joe

TracyP

soccerfreaks said:

Pain Management
Even if dad is in a bad way diagnostically, I would suggest that if his doctors are offering treatment of the kind described then they have hope that dad can, at the very least, live through this or with this for a sufficient amount of time to make the treatment worthwhile. After all, his doctors know that chemotherapy and radiation tend to degradate living conditions, implying, I hope, that they would only offer such treatment if they thought it promised some hope of improvement in quality and/or quantity of life.

As has been indicated, pain management is a critical component of survivorship. If dad is in excruciating pain, he is less likely to pursue options that would assist him in moving forward. So, it is imperative that his doctors find ways to reduce or eliminate the pain while allowing him to enjoy a certain level of quality in his daily life, even if not like he was formerly used to.

I would say, based on your narrative, that management of dad's pain needs to be as high a priority as cancer treatment right now, because it seems that dad will quit the treatment if the pain is not alleviated. His doctors need to be advised of his problems with pain and they need to be alerted that, frankly, pain may end up killing him rather than cancer if they do not correct this (which is to say, he will probably quit the treatment if the pain persists).

Pain management is often a puzzle for doctors because we are so different from one another. Oxycontin works for many folks, but for me it was like M&Ms: it did nothing. Personally, I found the fentanyl patch to be the best of my pain meds. But, again, dad's docs will need to base their decisions on dad's health, among other things.

Still, it should be at the top of their list of things to do for dad, in my non-medical opinion.

Best wishes to dad and his family.

Take care,

Joe

Thank you all
Thank you all for your support and suggestions. We made it through the weekend and finally got dad to atleast eat a couple bites of yogurt. My sister brought over her children (the loves of his life) to visit and my husband and I spent time over there as well. On Sunday he was more coherent and even joking around a little bit. At one point while he ran his hands through his hair to reveal massive clumps coming out he started to cry. I gave him a hug and asked if this is what he want, or if he wants to stop treatment. He told me that he wants to live, whatever that takes and that he's scared. My dad WANTS TO LIVE! I went to visit him today durring his 6 hour chemo treatment. He looked much better which I think is in part to the IV fluid they pump into him.
In the meantime, he refuses to let any of us drive him anywhere. And takes all his anger out on my mom. (they've been married for almost 28 yrs. I know that he doesnt mean to take it all out on her and that it's just easier that way for him, but she's taking it pretty bad. She's sick of being the bad guy.
But today, I have hope. I'm still scared and wake up each morning hoping that yesterday wont repeat itself. And most of all, I finally feel like there's someone out there who REALLY understands. Again, thank you all and I would greatly appriciate any additional information/tips/ help anyone has to offer. -Tracy

TracyP

soccerfreaks said:

Pain Management
Even if dad is in a bad way diagnostically, I would suggest that if his doctors are offering treatment of the kind described then they have hope that dad can, at the very least, live through this or with this for a sufficient amount of time to make the treatment worthwhile. After all, his doctors know that chemotherapy and radiation tend to degradate living conditions, implying, I hope, that they would only offer such treatment if they thought it promised some hope of improvement in quality and/or quantity of life.

As has been indicated, pain management is a critical component of survivorship. If dad is in excruciating pain, he is less likely to pursue options that would assist him in moving forward. So, it is imperative that his doctors find ways to reduce or eliminate the pain while allowing him to enjoy a certain level of quality in his daily life, even if not like he was formerly used to.

I would say, based on your narrative, that management of dad's pain needs to be as high a priority as cancer treatment right now, because it seems that dad will quit the treatment if the pain is not alleviated. His doctors need to be advised of his problems with pain and they need to be alerted that, frankly, pain may end up killing him rather than cancer if they do not correct this (which is to say, he will probably quit the treatment if the pain persists).

Pain management is often a puzzle for doctors because we are so different from one another. Oxycontin works for many folks, but for me it was like M&Ms: it did nothing. Personally, I found the fentanyl patch to be the best of my pain meds. But, again, dad's docs will need to base their decisions on dad's health, among other things.

Still, it should be at the top of their list of things to do for dad, in my non-medical opinion.

Best wishes to dad and his family.

Take care,

Joe

Thank you all
Thank you all for your support and suggestions. We made it through the weekend and finally got dad to atleast eat a couple bites of yogurt. My sister brought over her children (the loves of his life) to visit and my husband and I spent time over there as well. On Sunday he was more coherent and even joking around a little bit. At one point while he ran his hands through his hair to reveal massive clumps coming out he started to cry. I gave him a hug and asked if this is what he want, or if he wants to stop treatment. He told me that he wants to live, whatever that takes and that he's scared. My dad WANTS TO LIVE! I went to visit him today durring his 6 hour chemo treatment. He looked much better which I think is in part to the IV fluid they pump into him.
In the meantime, he refuses to let any of us drive him anywhere. And takes all his anger out on my mom. (they've been married for almost 28 yrs. I know that he doesnt mean to take it all out on her and that it's just easier that way for him, but she's taking it pretty bad. She's sick of being the bad guy.
But today, I have hope. I'm still scared and wake up each morning hoping that yesterday wont repeat itself. And most of all, I finally feel like there's someone out there who REALLY understands. Again, thank you all and I would greatly appriciate any additional information/tips/ help anyone has to offer. -Tracy

soccerfreaks

TracyP said:

Thank you all
Thank you all for your support and suggestions. We made it through the weekend and finally got dad to atleast eat a couple bites of yogurt. My sister brought over her children (the loves of his life) to visit and my husband and I spent time over there as well. On Sunday he was more coherent and even joking around a little bit. At one point while he ran his hands through his hair to reveal massive clumps coming out he started to cry. I gave him a hug and asked if this is what he want, or if he wants to stop treatment. He told me that he wants to live, whatever that takes and that he's scared. My dad WANTS TO LIVE! I went to visit him today durring his 6 hour chemo treatment. He looked much better which I think is in part to the IV fluid they pump into him.
In the meantime, he refuses to let any of us drive him anywhere. And takes all his anger out on my mom. (they've been married for almost 28 yrs. I know that he doesnt mean to take it all out on her and that it's just easier that way for him, but she's taking it pretty bad. She's sick of being the bad guy.
But today, I have hope. I'm still scared and wake up each morning hoping that yesterday wont repeat itself. And most of all, I finally feel like there's someone out there who REALLY understands. Again, thank you all and I would greatly appriciate any additional information/tips/ help anyone has to offer. -Tracy

Mom
The most important thing right now may be to make sure that MOM has an outlet. I am fond of saying that to be a good caregiver one has to take good care of the giver. This means that mom needs an outlet. Right now, everyone seems to be focused on dad while mom is probably having just as hard a time of it.

It may be understandable for dad to be 'taking it out' on mom, but that doesn't make it any easier for her!

You and your family are to be commended for looking out for dad, but please make time for mom, too. Arrange to take her away from IT if only for a couple of hours, for a movie or lunch or dinner, or something else that you can share with her. She will be better for it and so will dad as a result of her positive attitude.

Best wishes to dad and his family. It sounds like he is lucky enough to have a most caring family.

Take care,

Joe

TracyP

soccerfreaks said:

Mom
The most important thing right now may be to make sure that MOM has an outlet. I am fond of saying that to be a good caregiver one has to take good care of the giver. This means that mom needs an outlet. Right now, everyone seems to be focused on dad while mom is probably having just as hard a time of it.

It may be understandable for dad to be 'taking it out' on mom, but that doesn't make it any easier for her!

You and your family are to be commended for looking out for dad, but please make time for mom, too. Arrange to take her away from IT if only for a couple of hours, for a movie or lunch or dinner, or something else that you can share with her. She will be better for it and so will dad as a result of her positive attitude.

Best wishes to dad and his family. It sounds like he is lucky enough to have a most caring family.

Take care,

Joe

You're right Joe. I went on
You're right Joe. I went on a couple errands w/her tonight. Then stopped by her house to shave Dad's head completely! So far today, everyone is in good spirits! Dad did tell me today that the reason why he wouldn't go to the hospital this weekend is because people die in the hospital. he has hope, and that gives me hope! 6 more days of treatment to go and then maybe the oncologist will let us know if all this hell was worth it!