Looking for support

r2424243
r2424243 Member Posts: 51
in Colorectal Cancer #1
My dad has been diagnosed with Stage 4 metastic colon cancer. It appears to be in his colon and liver. He is 60 years old and otherwise has been in great health. He has been going thru chemo for about 5 or 6 months. He has a 3 day chemo session going home with the pump and getting it off on day 3. One of his medicines are avastin. Thats about all I know for sure. He goes to chemo and everyone seems to be doing just fine. He is feeling quite alone. He is in pain most of the time despite all his pain meds. We read all this information about people with his condition that are going to the store, doing things shortly after chemo, and basically still have a life. My dad is pretty much just stuck in bed all the time watching tv. And the doctors were surprised to hear that he is not well enough to get up and move around. I am just wondering if there is anyone else out there that has been through his similar situation. I am trying to find him some other examples so he can have some idea what to expect or at least what others are going thru. He occasionally has nausea but most of the time its the pain and discomfort that keeps him homebound. That and the anxiety of the unknown, like going out and unexpectantly getting sick. Just appreciate any info. I pray for him constantly and pray that God will heal and bless all of you!

Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #2
    Hi! what kind of pain and where?
    What kind of chemo beside avastin? While on chemo , folfox or folfiri+irinotecan i was able to work every morning , then go home and watch tv the sole afternoon laying in my sofa! Since you say is doing quite fine, it cut be a kind of depression , sometimes when I'm depressed or anxious I only want to stay at bed! So to check it with a psychiatrist .would be a good idea!. Maybe some pills would help him!, and yes that kind of anxiety is very normal in our cases, but he must obligate him self to get out of home and realize nothing happens !
    Hugs! ( sorry for my English but I'm from Barcelona,Spain)
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #3
    Welcome
    I'm glad you found us, stage 4ers will chime in for sure. I just wanted to say I think your dad may be depressed, I went through something similar when I first got diagnosed. I also started to suffer from extreme panic attacks as well. Is your dad able to get online and come here, or can you print off the replies you get to your post and show him? This place is more then a forum it's like an online family, and we all support each other and I think your dad needs that as do you! Is he on any anti depressant? does he talk to anyone about his condition?

    Just want to say there are wonderful people here of all stages, but the stage 4's are a mighty bunch and you will find real inspiration from them.

    Hugs
    Sonia
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #4
    pepebcn said:

    Hi! what kind of pain and where?
    What kind of chemo beside avastin? While on chemo , folfox or folfiri+irinotecan i was able to work every morning , then go home and watch tv the sole afternoon laying in my sofa! Since you say is doing quite fine, it cut be a kind of depression , sometimes when I'm depressed or anxious I only want to stay at bed! So to check it with a psychiatrist .would be a good idea!. Maybe some pills would help him!, and yes that kind of anxiety is very normal in our cases, but he must obligate him self to get out of home and realize nothing happens !
    Hugs! ( sorry for my English but I'm from Barcelona,Spain)

    Hehe
    Pepe you beat me in welcoming our new family member and your English is better then mine! :-)
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #5
    Sonia32 said:

    Welcome
    I'm glad you found us, stage 4ers will chime in for sure. I just wanted to say I think your dad may be depressed, I went through something similar when I first got diagnosed. I also started to suffer from extreme panic attacks as well. Is your dad able to get online and come here, or can you print off the replies you get to your post and show him? This place is more then a forum it's like an online family, and we all support each other and I think your dad needs that as do you! Is he on any anti depressant? does he talk to anyone about his condition?

    Just want to say there are wonderful people here of all stages, but the stage 4's are a mighty bunch and you will find real inspiration from them.

    Hugs
    Sonia

    l apologize Sonia! hahahaha!
    By the way which is the name of our new friend? his/her Nick is really difficult to remain!.
    Hugs to both!
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #6
    Hi and Welcome.
    I am sorry to hear of your father's diagnosis and that you have to be here but, it is a good place to be with lots of caring and experienced people to lend lots of knowledge and support.

    I'm not sure what type of pain your father is having but, just the emotional pain of the diagnosis can cause anxiety and depression that can translate to physical pain for some. I totally understand his worrying about going out of the house and feeling sick. I am a stage 4 and did 7 rounds of FOLFOX before I had to stop due to extreme sensitivity. I found that I had to push myself to go out the first week after my first chemo. I mentally didn't feel ready but pushed to do it anyway. It was quite an experience and I may have done it a day or 2 early but, I made a short trip to the store and did get through it. If you click on my name you can read my blog about my chemo experiences.

    Your father sounds like he'd really benefit from joining the forum and getting some emotional support along with lots of experience from others. It's a tough diagnosis and colon cancer is a "chitty" disease but, we are all here together to support each other. The board has really made a big difference in my attitude and my ability to cope with all the ins and outs. Please point him our way so we can help.

    I will tell you that the week of chemo, I really did not do much of anything but watch a lot of TV. The week in between was better and I used it to catch up on things that I didn't do on chemo week. As treatments go on, the side effects begin to last longer and at the end, I was having severe side effects 10 or 12 days after, leaving me only a couple of days that felt somewhat normal. Everyone's tolerance is different. Some can work and carry on and some just cannot no matter how hard they try. With my extreme sensitivity, I had a really tough time and would sometimes feel quilty that I couldn't keep going the way I wanted to. My head would have all these really "important" things that it had decided I must take care of but, my body just would not agree and I'd have to listen to my body.

    Perhaps talking with his doctor about possible anxiety and depression would help. It's quite common for us to be prescribed anti-anxiety and antidepressants.

    HUGS to you and your father.
  • here4lfe
    here4lfe Member Posts: 306 Member
    #7
    Caregiver here. Be vigilant
    Caregiver here. Be vigilant and supportive. When my wife (stage 4) has complaints, I'm like CSI. Where does it hurt, when did it start, what makes it better/worse, does over the counter medicine affect the pain? Then when we see the oncologist, I know to bring these issues up. Learn all you can (this site and the people in it are very knowledgeable and empathetic). The treatment protocol has a specific, well known progression, but every patient is different. If your dad has side effects which are off the protocol, or more severe than expected, call the oncologist. That's how we caught a liver infection after my wife's liver resection.

    Be your dad's advocate. He has enough to worry about to remember to bring these issues to the doctor's attention. Take notes. But you have to do it in a way that makes him feel in control and engaged.
    Good luck. The caregiver role has no manual, and it must be done right to make sure your loved one gets the proper care, maintains a good state of mind, and a positive outcome.

    Best
  • r2424243
    r2424243 Member Posts: 51
    #8
    pepebcn said:

    Hi! what kind of pain and where?
    What kind of chemo beside avastin? While on chemo , folfox or folfiri+irinotecan i was able to work every morning , then go home and watch tv the sole afternoon laying in my sofa! Since you say is doing quite fine, it cut be a kind of depression , sometimes when I'm depressed or anxious I only want to stay at bed! So to check it with a psychiatrist .would be a good idea!. Maybe some pills would help him!, and yes that kind of anxiety is very normal in our cases, but he must obligate him self to get out of home and realize nothing happens !
    Hugs! ( sorry for my English but I'm from Barcelona,Spain)

    Thanks so much for the
    Thanks so much for the advice. I am not sure of his other drugs. I know he is on an antidressant and anxiety meds. His pain in in the stomach area. He has to sit/lay in a certain position and hold pressure on his stomach. Heating pad seems to hellp. Thanks for your advice.
  • r2424243
    r2424243 Member Posts: 51
    #9
    Sonia32 said:

    Welcome
    I'm glad you found us, stage 4ers will chime in for sure. I just wanted to say I think your dad may be depressed, I went through something similar when I first got diagnosed. I also started to suffer from extreme panic attacks as well. Is your dad able to get online and come here, or can you print off the replies you get to your post and show him? This place is more then a forum it's like an online family, and we all support each other and I think your dad needs that as do you! Is he on any anti depressant? does he talk to anyone about his condition?

    Just want to say there are wonderful people here of all stages, but the stage 4's are a mighty bunch and you will find real inspiration from them.

    Hugs
    Sonia

    Thanks so much. He is on
    Thanks so much. He is on Paxil for depression and also a anxiety medication. His pain seems to be in his stomach area. I will try to get him on the sight. I really want him to understand that he is not the only one and with the treatment now-a-days, he can get things back to normal and get on a maintainace schedule after the tumor has shrunk.
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #10
    here4lfe said:

    Caregiver here. Be vigilant
    Caregiver here. Be vigilant and supportive. When my wife (stage 4) has complaints, I'm like CSI. Where does it hurt, when did it start, what makes it better/worse, does over the counter medicine affect the pain? Then when we see the oncologist, I know to bring these issues up. Learn all you can (this site and the people in it are very knowledgeable and empathetic). The treatment protocol has a specific, well known progression, but every patient is different. If your dad has side effects which are off the protocol, or more severe than expected, call the oncologist. That's how we caught a liver infection after my wife's liver resection.

    Be your dad's advocate. He has enough to worry about to remember to bring these issues to the doctor's attention. Take notes. But you have to do it in a way that makes him feel in control and engaged.
    Good luck. The caregiver role has no manual, and it must be done right to make sure your loved one gets the proper care, maintains a good state of mind, and a positive outcome.

    Best

    Be vigilant
    I second this.

    Discovering the true source of the pain could be critical, however, if it turns out to be something the doctors cannot remedy, then a visit with a pain specialist may be in order. A certain level of activity will help him through this, but the pain needs to be dealt with to let that happen.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #11
    Lori-S said:

    Hi and Welcome.
    I am sorry to hear of your father's diagnosis and that you have to be here but, it is a good place to be with lots of caring and experienced people to lend lots of knowledge and support.

    I'm not sure what type of pain your father is having but, just the emotional pain of the diagnosis can cause anxiety and depression that can translate to physical pain for some. I totally understand his worrying about going out of the house and feeling sick. I am a stage 4 and did 7 rounds of FOLFOX before I had to stop due to extreme sensitivity. I found that I had to push myself to go out the first week after my first chemo. I mentally didn't feel ready but pushed to do it anyway. It was quite an experience and I may have done it a day or 2 early but, I made a short trip to the store and did get through it. If you click on my name you can read my blog about my chemo experiences.

    Your father sounds like he'd really benefit from joining the forum and getting some emotional support along with lots of experience from others. It's a tough diagnosis and colon cancer is a "chitty" disease but, we are all here together to support each other. The board has really made a big difference in my attitude and my ability to cope with all the ins and outs. Please point him our way so we can help.

    I will tell you that the week of chemo, I really did not do much of anything but watch a lot of TV. The week in between was better and I used it to catch up on things that I didn't do on chemo week. As treatments go on, the side effects begin to last longer and at the end, I was having severe side effects 10 or 12 days after, leaving me only a couple of days that felt somewhat normal. Everyone's tolerance is different. Some can work and carry on and some just cannot no matter how hard they try. With my extreme sensitivity, I had a really tough time and would sometimes feel quilty that I couldn't keep going the way I wanted to. My head would have all these really "important" things that it had decided I must take care of but, my body just would not agree and I'd have to listen to my body.

    Perhaps talking with his doctor about possible anxiety and depression would help. It's quite common for us to be prescribed anti-anxiety and antidepressants.

    HUGS to you and your father.

    Tell him to join us and we will have him up and running......
    well maybe up in spirits and just maybe give him some "from the trenches" stories and shortcuts that he may not be getting and need to know...You are doing a wonderful job at caregiving for your father, but bring him here, let him describe to us what he feels, and we can most likely give him some direction in what may be some issues or what he may need in the emotional journey as well as the physical journey he is traveling. They are 50/50 in equivalency when it comes to recouping times. Sometimes I think the emotional side is more of a deter than the physical side of the disease is...Keep talking to us and please, ask him to join in our conversations, it can't hurt anything at all......Love to you and yours......buzz
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #12
    r2424243 said:

    Thanks so much for the
    Thanks so much for the advice. I am not sure of his other drugs. I know he is on an antidressant and anxiety meds. His pain in in the stomach area. He has to sit/lay in a certain position and hold pressure on his stomach. Heating pad seems to hellp. Thanks for your advice.

    Hi r24
    Since it appears that he hasn't had a resection and still has a tumor, this could very well be causing pain. It is difficult for things to pass by the tumor sometimes. Tell him that if he is having gas build up or even stool build up that it seems to help if he can lie on his left side. This seems to help things pass. Sometimes lying on the left side and then changing positions or rocking back and forth can help also. Have him experiment with what might work best for him. I know from experience that the pain meds that they give us don't always work so well for abdominal pain when there is gas build up or any kind of blockage. Watch that he doesn't start to throw up soon after eating and have intense pain as it might suggest that he has a blockage. If that is the case then a trip to the doc or ER is needed. Discuss these possibilities with the doc. I'm sure that they are wanting to wait until the tumor shrinks some more before surgery. Just be vigilant about a possible blockage and discuss the pain with the doctor.

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