Need guidance

EFP18
EFP18 Member Posts: 4
edited March 2014 in Colorectal Cancer #1
My name is Liz - I am 23 years old, and I have watched my father suffer with colon cancer for the past four years. The cancer had burst through the intestinal wall when they discovered it, and he was given a colostomy bag for about a year after they removed the blockage and as much of the cancer as they could see. After he was reconnected, they discovered it had reappeared, this time on one of his kidneys, so they removed that as well. He has been on 5FU, Xeloda, and now he is taking Oxiplatin (sp) with Avastin. Lately he has just continuously lost weight and is so depressed - he has definitely lost the will to carry on. What can I do? My family is at a loss, and it is so hard to see him this way. For those of you who have situations similar to his, what gets you through the day? I feel so helpless, I just want to see him smile again, but I can't help but feel that he's getting so sickly looking on the outside because he's giving up on the inside. It's selfish of me to want him to be strong for us so we can have him around longer, but I can't help it - he's too young to stop trying... Any guidance you can give me will be so appreciated.

Comments

  • lfondots63
    lfondots63 Member Posts: 818 Member
    Hi,

    I'm glad you found this site but always sorry what circumstances brings everyone here. Maybe try printing out some of the posts or stories from other people's personal stories for him to read. It really is inspiring what some people have gone through and are NED (no existence of disease) now. Also if he is up to it, take him on something fun that he would normally do. Even getting away from thinking about what is going on for a little while can help. Also just so you know with the oxiplatin it is hard to eat/drink anything cold. Maybe he is also just having problems with eating that he is loosing weight. Being a care giver and watching someone you love suffer is the hardest. Just know we are here for you and your dad and understand. HUGS for you and your dad.

    Lisa
  • spongebob
    spongebob Member Posts: 2,565 Member
    Liz -

    It always touches me to see a family member care so much for a loved one that they come here seeking advice. You are a terrific daughter for reaching out the way you have to try and find some help for your dad.

    Let me start by saying that, as a cancer patient, your attitude plays a key role in your recovery. A positive attitude has been clinically linked to a positive outcome with cancer. I can't say that I know how your dad feels, but I can say that I hit some lows early in my treatments as well.

    Chemo has been known to cause depression-like symptoms in patients. There is also a possibility that he is clinically depressed, in which case anti-depressive meds will help a lot. That is definitely something for you to discuss with his doctor.

    In the mean time there are things that you can do; get him outside and involved in some long-term projects. Get him active - physical movement not only helps with depression, there have been studys that have concluded that there is a positive link between physical activity and colon cancer survival.

    Lastly, don't forget to take care of yourself, Liz. Do something nice for yourself. Caregivers all too often neglect themselves and suffer greatly for it.

    Keeping you and your dad in my prayers.

    - SpongeBob
  • EFP18
    EFP18 Member Posts: 4
    spongebob said:

    Liz -

    It always touches me to see a family member care so much for a loved one that they come here seeking advice. You are a terrific daughter for reaching out the way you have to try and find some help for your dad.

    Let me start by saying that, as a cancer patient, your attitude plays a key role in your recovery. A positive attitude has been clinically linked to a positive outcome with cancer. I can't say that I know how your dad feels, but I can say that I hit some lows early in my treatments as well.

    Chemo has been known to cause depression-like symptoms in patients. There is also a possibility that he is clinically depressed, in which case anti-depressive meds will help a lot. That is definitely something for you to discuss with his doctor.

    In the mean time there are things that you can do; get him outside and involved in some long-term projects. Get him active - physical movement not only helps with depression, there have been studys that have concluded that there is a positive link between physical activity and colon cancer survival.

    Lastly, don't forget to take care of yourself, Liz. Do something nice for yourself. Caregivers all too often neglect themselves and suffer greatly for it.

    Keeping you and your dad in my prayers.

    - SpongeBob

    Lisa and SB-

    Thank you so much for your fast responses. I think what scares me is that he's losing the positive attitude he once had. When he had his colostomy, he would always make light of the situation - with even inappropriate jokes. At first in his chemo, he would have such a positive attitude. Now, he's so negative. I can understand, it must be so trying to go through so many years of treatment and just get worse. It's possible there's another blockage, from scarring or more tumors, and that's why he keeps getting sick - if there is surgery involved in fixing that, I can almost guarantee he won't do it. He won't touch anti-depressants, because he's already disgusted with the amount of chemicals he's putting into his body. He used to swim 70 laps a day, now he can only do 45, and that's so frustrating to him. He has stayed as physical as possible through all this, and he still gets worse. I would love to take him somewhere different, but he's most happy on his couch in front of the TV. I now where he's coming from, but I feel like there is something I'm doing wrong to not be able to encourage him. I'm just so overwhelmed - I feel like I should be used to this by now, but sometimes I have these days where you'd think I was the one that was sick. I just want a sense of normalcy again - does that ever come back?
  • ron50
    ron50 Member Posts: 1,723 Member
    EFP18 said:

    Lisa and SB-

    Thank you so much for your fast responses. I think what scares me is that he's losing the positive attitude he once had. When he had his colostomy, he would always make light of the situation - with even inappropriate jokes. At first in his chemo, he would have such a positive attitude. Now, he's so negative. I can understand, it must be so trying to go through so many years of treatment and just get worse. It's possible there's another blockage, from scarring or more tumors, and that's why he keeps getting sick - if there is surgery involved in fixing that, I can almost guarantee he won't do it. He won't touch anti-depressants, because he's already disgusted with the amount of chemicals he's putting into his body. He used to swim 70 laps a day, now he can only do 45, and that's so frustrating to him. He has stayed as physical as possible through all this, and he still gets worse. I would love to take him somewhere different, but he's most happy on his couch in front of the TV. I now where he's coming from, but I feel like there is something I'm doing wrong to not be able to encourage him. I'm just so overwhelmed - I feel like I should be used to this by now, but sometimes I have these days where you'd think I was the one that was sick. I just want a sense of normalcy again - does that ever come back?

    Hi Liz,
    One of the greatest wishes for cancer sufferers and I have known quite a few,is to beat cancer and return to normal. Unfortunately it doesn't work that way. Once you have fulfilled the criteria for getting cancer , you are now enlisted in the front line of the war against cancer. There is no running or hiding, we just get tough. But it is not so bad because if you look left and right there is someone to lean on. There are a lot of walking wounded amongst us and we rely heavily on our mates to get us through. That is what this site is about. I'm an eight and a half year survivor of stage three colon cancer and I can tell you that as normal as life can be made it will never be they same. I still need the support of my friends . I need to be super alert to my health. I need to constantly remind myself that the parts of my life I have lost have been replaced by parts equally exciting. I don't think that we really appreciate anything until we nearly lose it and that includes life. Print out some of the posts for your Dad .We are fanatics but we are good ones. Best wishes to both of you and good luck to your Dad for the future,Ron.
  • spongebob
    spongebob Member Posts: 2,565 Member
    ron50 said:

    Hi Liz,
    One of the greatest wishes for cancer sufferers and I have known quite a few,is to beat cancer and return to normal. Unfortunately it doesn't work that way. Once you have fulfilled the criteria for getting cancer , you are now enlisted in the front line of the war against cancer. There is no running or hiding, we just get tough. But it is not so bad because if you look left and right there is someone to lean on. There are a lot of walking wounded amongst us and we rely heavily on our mates to get us through. That is what this site is about. I'm an eight and a half year survivor of stage three colon cancer and I can tell you that as normal as life can be made it will never be they same. I still need the support of my friends . I need to be super alert to my health. I need to constantly remind myself that the parts of my life I have lost have been replaced by parts equally exciting. I don't think that we really appreciate anything until we nearly lose it and that includes life. Print out some of the posts for your Dad .We are fanatics but we are good ones. Best wishes to both of you and good luck to your Dad for the future,Ron.

    Ya know, Liz -

    Ron makes a good point here. You are doing all you can, but maybe your dad needs to vent to some folks who have walked or are currently walking his road. Maybe he would benefit by sitting down at your keyboard and just unloading on us?

    Food for thought.

    - SB
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    EFP18 said:

    Lisa and SB-

    Thank you so much for your fast responses. I think what scares me is that he's losing the positive attitude he once had. When he had his colostomy, he would always make light of the situation - with even inappropriate jokes. At first in his chemo, he would have such a positive attitude. Now, he's so negative. I can understand, it must be so trying to go through so many years of treatment and just get worse. It's possible there's another blockage, from scarring or more tumors, and that's why he keeps getting sick - if there is surgery involved in fixing that, I can almost guarantee he won't do it. He won't touch anti-depressants, because he's already disgusted with the amount of chemicals he's putting into his body. He used to swim 70 laps a day, now he can only do 45, and that's so frustrating to him. He has stayed as physical as possible through all this, and he still gets worse. I would love to take him somewhere different, but he's most happy on his couch in front of the TV. I now where he's coming from, but I feel like there is something I'm doing wrong to not be able to encourage him. I'm just so overwhelmed - I feel like I should be used to this by now, but sometimes I have these days where you'd think I was the one that was sick. I just want a sense of normalcy again - does that ever come back?

    Hi Liz,

    Cancer itself--the cancer cells--can cause depression. Good for him that he's avoiding the antidepressants, but is he willing to go into counseling? He is carrying a very heavy burden right now. His health is not great and I'm sure that weighs heavy on his mind. Sometimes checking out and watching TV is a survival mechanism in itself. As long as he doesn't stay there......

    It is overwhelming. I know.

    I have been on both sides of the fence so to speak. First my sister had intestinal cancer dx'ed in her 20's (she was 33 when she died) and then 9 years later in my 30's I was dx'ed with colon cancer. I can tell you that being on the sister side was MUCH more frustrating than being on the patient side. But being on the sister side taught me a lot so when I was the patient I had already mapped out how I wanted to do this.....but I digress. anyway, in both cases nothing was ever "normal" again....in the way it had been. We defined a new "normal" and you may too.

    And by the way, tell you father that there are folks surviving on here that didn't even do the prescribed chemo. I didn't put those chemicals into my body either. I have remained NED for almost 5 years having just done alternatives and dietary healing methods. If he wants to talk, we're here.

    peace, emily

    ps. I was Stage 3 lymph pos.
  • KathiM
    KathiM Member Posts: 8,028 Member
    spongebob said:

    Ya know, Liz -

    Ron makes a good point here. You are doing all you can, but maybe your dad needs to vent to some folks who have walked or are currently walking his road. Maybe he would benefit by sitting down at your keyboard and just unloading on us?

    Food for thought.

    - SB

    Yup, as usually, SB, your food is just the right entre! I think if it is possible, a 'first line' approach..get dad online here (even tell him YOU Won't look...) to either post a thread like you did, or get into the chat rooms...we are definately family here, and the one difference between us and you is he doesn't have to put on a brave face for us...we all have had our down times, and our saviors are here.
    Please encourage him to try.
    And, if you look at my page, SPECIAL hugs to you...caregivers to me are the greatest gift of all.
    Hugs, Kathi