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  • christinecarl
    christinecarl Member Posts: 543 Member
    #22
    Hi
    Hello Karen,

    When I think back to how scared I was when I was first diagnosed (Dec 2, 2008) I can't believe how far I have come. It is so hard to deal with the news at first, but in time you will find a new normal. Everyone always talks about how hard it is on your body to go through this, but they never talk about emotionally what a roller coaster it is. I am glad you decided to see a counselor, I think most people could use that when they get this kind of news. I hope that you continue to come here whenever you need support or to rant. We have all been there, you are not alone.
  • shincy
    shincy Member Posts: 9
    #23
    Hi
    Sorry to hear you had to join our group. My husband has stage 4 colon cancer so I know how scared you are. If I have to give you a piece
    Of ad ice I would say it would be learn all you can about your cancer. Because with knowledge comes power to handle what you will go through. This is a great plan e to start because a lot of what you need to know is here. Please keep us informed on how you are doing. Lots of prayers coming your wy. God Bless. SHEILA
  • Nana b
    Nana b Member Posts: 3,030 Member
    #24
    shincy said:

    Hi
    Sorry to hear you had to join our group. My husband has stage 4 colon cancer so I know how scared you are. If I have to give you a piece
    Of ad ice I would say it would be learn all you can about your cancer. Because with knowledge comes power to handle what you will go through. This is a great plan e to start because a lot of what you need to know is here. Please keep us informed on how you are doing. Lots of prayers coming your wy. God Bless. SHEILA

    I'm wondering have you had a
    I'm wondering have you had a pet scan, and/or a CT scan? Have they told you, your CEA markers? This is all good information to have. I would think the liver surgeon already did a CT and he just isn't going in fir a look without it.

    I had my colorectal surgery, 3 months of chemo, then one month off of avastin, then 60%liver resection, then healing and back on chemo for 3 months.

    I have been NED (no evidence if decades for three years) but my CEA is going up again. CEA is our cancer markers. accurate for some and not for others.

    I'm glad you found us.
  • steved
    steved Member Posts: 834 Member
    #25
    This is better than a psych consult!
    Sorry to find you here but in truth it sounds like you are in a position where a board like this can be of great value to you. I too have stage 4 cancer and in fact am also a psychiatrist in the UK. I am well down this journey having been diagnosed 8 years back and can understand the mental journey you are beginning to get your head around. In truth professionals can be helpful to some going through this but really what you need around you is people who you can talk to, off load to and can understand your situation which this board is great for. You also need time as it is all very early and new.

    Be patient. You may find that a bit down the track having a professional to talk to or even psychitric input may help but for now give yourself time to simply digest the huge change that has happened and adjust to the fact you have this diagnosis. By the sounds of your posts over the last fews days I can hear you are beginning to do that.

    Be patient.
    steve
  • Karen63
    Karen63 Member Posts: 25
    #26
    maglets said:

    Dearet Karen
    Karen you are doing so well.....so so well. Yes the protein of course contains all the amino acid building blocks that you need to heal. A wee bit of cheese, shakes, eggs if you are eating those things all good.
    It may be folfox but again I think just getting the liver behind you is the next step. May 22 is soooo soon .....you are really movin there girl. Sounds like you have a good team and lots of family support too.

    It will be all right in the end and if it is not all right, then it's not the end"

    ask away on liver surgery when you are ready...

    with love and support

    mags

    liver surgery
    Mags and all: thanks for all your info. Yes - liver surgery this Tuesday. The surgeon said they could remove up to 40% of my liver which will regenerate (we hope :). I have 2 definite colon cancer spots, a 3rd may be a lymph node. All three show to be on the surface and not deep into my liver from the PET scan. The surgeon says he will make "game day decisions" after he gets in there and really sees my liver. The good news is that my colon surgeon decided to do a colonoscopy this past week to look at a "questionable area" of my sigmoid colon which lit up in the PET - that turned out to be a false positive. Hurrah! I was looking for some good news. And, now that I am beginning to adjust (do you ever really adjust to having cancer?) to the knowledge of where I am really at now - my new reality - I see how fortunate I am in many regards. I plan on being a real fighter. I have two granddaughters - 7 and 8. In the older one's Brownie meeting a few weeks ago they were all supposed to share their "delights and concerns". My Grandaughter said she was delighted I was out of the hospital, but concerned that I had cancer and was worried about me. These delightful little girls will keep me going! Love and thanks to all of you!

    -Karen
  • Karen63
    Karen63 Member Posts: 25
    #27
    maglets said:

    Dearet Karen
    Karen you are doing so well.....so so well. Yes the protein of course contains all the amino acid building blocks that you need to heal. A wee bit of cheese, shakes, eggs if you are eating those things all good.
    It may be folfox but again I think just getting the liver behind you is the next step. May 22 is soooo soon .....you are really movin there girl. Sounds like you have a good team and lots of family support too.

    It will be all right in the end and if it is not all right, then it's not the end"

    ask away on liver surgery when you are ready...

    with love and support

    mags

    liver surgery
    Mags and all: thanks for all your info. Yes - liver surgery this Tuesday. The surgeon said they could remove up to 40% of my liver which will regenerate (we hope :). I have 2 definite colon cancer spots, a 3rd may be a lymph node. All three show to be on the surface and not deep into my liver from the PET scan. The surgeon says he will make "game day decisions" after he gets in there and really sees my liver. The good news is that my colon surgeon decided to do a colonoscopy this past week to look at a "questionable area" of my sigmoid colon which lit up in the PET - that turned out to be a false positive. Hurrah! I was looking for some good news. And, now that I am beginning to adjust (do you ever really adjust to having cancer?) to the knowledge of where I am really at now - my new reality - I see how fortunate I am in many regards. I plan on being a real fighter. I have two granddaughters - 7 and 8. In the older one's Brownie meeting a few weeks ago they were all supposed to share their "delights and concerns". My Grandaughter said she was delighted I was out of the hospital, but concerned that I had cancer and was worried about me. These delightful little girls will keep me going! Love and thanks to all of you!

    -Karen
  • Karen63
    Karen63 Member Posts: 25
    #28
    maglets said:

    Dearet Karen
    Karen you are doing so well.....so so well. Yes the protein of course contains all the amino acid building blocks that you need to heal. A wee bit of cheese, shakes, eggs if you are eating those things all good.
    It may be folfox but again I think just getting the liver behind you is the next step. May 22 is soooo soon .....you are really movin there girl. Sounds like you have a good team and lots of family support too.

    It will be all right in the end and if it is not all right, then it's not the end"

    ask away on liver surgery when you are ready...

    with love and support

    mags

    liver surgery
    Mags and all: thanks for all your info. Yes - liver surgery this Tuesday. The surgeon said they could remove up to 40% of my liver which will regenerate (we hope :). I have 2 definite colon cancer spots, a 3rd may be a lymph node. All three show to be on the surface and not deep into my liver from the PET scan. The surgeon says he will make "game day decisions" after he gets in there and really sees my liver. The good news is that my colon surgeon decided to do a colonoscopy this past week to look at a "questionable area" of my sigmoid colon which lit up in the PET - that turned out to be a false positive. Hurrah! I was looking for some good news. And, now that I am beginning to adjust (do you ever really adjust to having cancer?) to the knowledge of where I am really at now - my new reality - I see how fortunate I am in many regards. I plan on being a real fighter. I have two granddaughters - 7 and 8. In the older one's Brownie meeting a few weeks ago they were all supposed to share their "delights and concerns". My Grandaughter said she was delighted I was out of the hospital, but concerned that I had cancer and was worried about me. These delightful little girls will keep me going! Love and thanks to all of you!

    -Karen
  • Karen63
    Karen63 Member Posts: 25
    #29
    Momof2plusteentwins said:

    When are you starting chemo?
    I am also newly diagnosed 4/11/2012 after a colonoscopy, no family history was having blood in stool and small stools and urgency, Started radiation and chemo 5FU 24/7 and radiation 5 days a week for 5 weeks. Surgery will be scheduled about 3 weeks after completion of treatment, not sure when they will cut liver tumor out. Then 24 weeks of chemo after. When do you start chemo? I am scared everyday, and cry everyday. I have 4 kids, 2 married and twins that are 14 - I want to see them grow up.
    Good luck on your treatment,
    Sandy

    chemo
    Sandy: you are just abut where I am on DX. It is still such a roller coaster, isn't it! Some days I just can't believe ths has happened. They have me slated to begin chemo 4-6 weeks after my liver surgery. The surgeon gave me an option: 3 months of chemo and then liver surgery - a month off and another 3 months of chemo or (the option we selected) liver surgery first, and then 6 months of chemo. So here we go, Sandy. Let's keep up with each other! -Karen
  • Karen63
    Karen63 Member Posts: 25
    #30
    Momof2plusteentwins said:

    When are you starting chemo?
    I am also newly diagnosed 4/11/2012 after a colonoscopy, no family history was having blood in stool and small stools and urgency, Started radiation and chemo 5FU 24/7 and radiation 5 days a week for 5 weeks. Surgery will be scheduled about 3 weeks after completion of treatment, not sure when they will cut liver tumor out. Then 24 weeks of chemo after. When do you start chemo? I am scared everyday, and cry everyday. I have 4 kids, 2 married and twins that are 14 - I want to see them grow up.
    Good luck on your treatment,
    Sandy

    chemo
    Sandy: you are just abut where I am on DX. It is still such a roller coaster, isn't it! Some days I just can't believe ths has happened. They have me slated to begin chemo 4-6 weeks after my liver surgery. The surgeon gave me an option: 3 months of chemo and then liver surgery - a month off and another 3 months of chemo or (the option we selected) liver surgery first, and then 6 months of chemo. So here we go, Sandy. Let's keep up with each other! -Karen
  • Karen63
    Karen63 Member Posts: 25
    #31
    Nana b said:

    I'm wondering have you had a
    I'm wondering have you had a pet scan, and/or a CT scan? Have they told you, your CEA markers? This is all good information to have. I would think the liver surgeon already did a CT and he just isn't going in fir a look without it.

    I had my colorectal surgery, 3 months of chemo, then one month off of avastin, then 60%liver resection, then healing and back on chemo for 3 months.

    I have been NED (no evidence if decades for three years) but my CEA is going up again. CEA is our cancer markers. accurate for some and not for others.

    I'm glad you found us.

    PET/CT scans and CEA
    Nana: yes. I have had CT and PET scans. I also had a CEA - which showed 7. The oncologist said that the CEA's are not necessarily accurate, but just another piece of the puzzle they try to use. The PET showed 2 definite areas on my liver (which were biopsied by the colon surgeon during colon surgery and are colon cancer areas) and another spot which the liver surgeon thinks may be a lymph node - we will find out in a couple of days now. You and others give me much encouragement - that you are living with colon cancer, but are not totally consumed by it. You still have lives! thank you so much. -Karen
  • Karen63
    Karen63 Member Posts: 25
    #32
    steved said:

    This is better than a psych consult!
    Sorry to find you here but in truth it sounds like you are in a position where a board like this can be of great value to you. I too have stage 4 cancer and in fact am also a psychiatrist in the UK. I am well down this journey having been diagnosed 8 years back and can understand the mental journey you are beginning to get your head around. In truth professionals can be helpful to some going through this but really what you need around you is people who you can talk to, off load to and can understand your situation which this board is great for. You also need time as it is all very early and new.

    Be patient. You may find that a bit down the track having a professional to talk to or even psychitric input may help but for now give yourself time to simply digest the huge change that has happened and adjust to the fact you have this diagnosis. By the sounds of your posts over the last fews days I can hear you are beginning to do that.

    Be patient.
    steve

    psych consult
    Steve: thank you. I was feeling adrift without seeing a psych until early June, but you are making me understand that it might be an advantage to settle down a bit first. I think I am beginning to understand my cancer diagnosis. I know the surgeon told me that I would need to stop thinking about the past and start moving toward the future (a great and caring surgeon) and I think I am beginning to manage that a bit. I am also beginning to laugh at some of the things that happen in life - even in context of cancer. I am beginning to get anxious about my liver surgery on Tuesday - but I guess that would be normal enough. Thank you for your support and hope you are also doing well -karen
  • bspangler47
    bspangler47 Member Posts: 145
    #33
    Karen63 said:

    psych consult
    Steve: thank you. I was feeling adrift without seeing a psych until early June, but you are making me understand that it might be an advantage to settle down a bit first. I think I am beginning to understand my cancer diagnosis. I know the surgeon told me that I would need to stop thinking about the past and start moving toward the future (a great and caring surgeon) and I think I am beginning to manage that a bit. I am also beginning to laugh at some of the things that happen in life - even in context of cancer. I am beginning to get anxious about my liver surgery on Tuesday - but I guess that would be normal enough. Thank you for your support and hope you are also doing well -karen

    Karen
    Hi Karen.

    My name is Barbara, and i no longer colorectal stage 3. Have a total of 5 kids, first 3 are 26, 23, 18, 12 and 20.

    Had my first surgery in March of 09. When I woke uo I was so pissed at the world, I didnt want to survive with they I was. I even seen drs in the hospital to speak to me but that didnt help. I would alo attended church, had people bring over food for us. friends came over to help etc. I also started to writing in a jorunal that help a great deat. There were time I would scream and yell. you are in my prayers

    please keep us posted u r in my prayers

    Barbara Spangler
  • Karen63
    Karen63 Member Posts: 25
    #34
    bspangler47 said:

    Karen
    Hi Karen.

    My name is Barbara, and i no longer colorectal stage 3. Have a total of 5 kids, first 3 are 26, 23, 18, 12 and 20.

    Had my first surgery in March of 09. When I woke uo I was so pissed at the world, I didnt want to survive with they I was. I even seen drs in the hospital to speak to me but that didnt help. I would alo attended church, had people bring over food for us. friends came over to help etc. I also started to writing in a jorunal that help a great deat. There were time I would scream and yell. you are in my prayers

    please keep us posted u r in my prayers

    Barbara Spangler

    diagnosis
    Thanks, Barbara. A journal is a good idea. I bought one and then couldn't make myself write. I will try again. I understand your anger, too. thanks so much - Karen
  • maglets
    maglets Member Posts: 2,576 Member
    #35
    Karen63 said:

    diagnosis
    Thanks, Barbara. A journal is a good idea. I bought one and then couldn't make myself write. I will try again. I understand your anger, too. thanks so much - Karen

    journal
    karen a journal can be daunting at first. How could you possibly write down all the emotions you are feeling. At one point in my cancer journey I started to write down one thing I was grateful for on the day.....no matter how crappy the day was I would record a single smile a flower anything .....it kinda gets you out of yourself just for one second.

    also later it is great to record tests or meds or cea.....things you think you are going to remember but don't

    you are doing well kiddo...hang in

    mags

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