New here....need advice from other Stage 4 survivors

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jk1959
jk1959 Member Posts: 4
in Colorectal Cancer #1
I was diagnosed with stage 4 rectal cancer in June. 6 treatments of chemo were tolerable, last treatmnet Oct 19 as I prepped(?)for liver re section Nov 30th. Prognosis now is better as surgery went well. neuropathy now in feet and hands. Radiation to start Jan 16th. Main reason for post is to see what others say about the extreme emotion swings I seem to be going thru. Cry at any momment then appear to recover. Serious bouts of depression partly stemming from recovery, future etc. Anyone care to comment? My wiife has been all over this site but this is my first time.....

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  • steveandnat
    steveandnat Member Posts: 886
    #2
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    Wild emotional swings
    Yea there are wild emotional swings with this cancer. Sometimes it is good to let it out emotionally just so you can bear it. You probably really appreaciate the good days and events that we use to take for granted...that causes alot of emotion. Try not to over think the future but take each day at a time. I like to set short and realistic goals. Hope everything works out.
    Jeff
  • jk1959
    jk1959 Member Posts: 4
    #3
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    steveandnat said:

    Wild emotional swings
    Yea there are wild emotional swings with this cancer. Sometimes it is good to let it out emotionally just so you can bear it. You probably really appreaciate the good days and events that we use to take for granted...that causes alot of emotion. Try not to over think the future but take each day at a time. I like to set short and realistic goals. Hope everything works out.
    Jeff

    Thanks, your right I do
    Thanks, your right I do appreciate the good days and tend to get frustrated which leads to the emotional side of things. Makes it extra hard when my daughter sees it. I need to look at how I can better manage the day at a time thing. I start back at work next week albeit in a different role which does not help matters much but it is a job and the company has been good to me throughout.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #4
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    Hi
    While I was not diagnosed as Stage 4, the emotional swings and bouts of depression can be found in many cancer survivors.

    Have you contacted any support groups?

    Have you discussed this with your doctor?

    Have you considered counseling with a doc who works with cancer patients?

    Check with your local American Cancer Society, local hospital where you get chemo or with your primary doctor.

    What you are feeling is not unusual, but it need not be debilitating. Help is out there.

    Marie who loves kitties
  • neons356
    neons356 Member Posts: 57 Member
    #5
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    Not stage 4 but...
    I'm a NED (no evidence of disease) stage 3 survivor, 53yo at the time diagnosed. Don't know what the case is for you but for me it was the first time in my life that MY mortality was standing right there in front of me. There it was- the truth of life is that we all die, and I was facing it a whole lot earlier than I was ready for. How can I die now? I don't have time to die, too many responsibilities, kids play or soccer game to attend, mortgage, a kid that I'm homeschooling. All of a sudden, there you are kinda face to face with the grim reaper and on top of it all you feel somewhat alone with it because until you're in this position you can't really understand what it's like.
    Do you think that all this just might freak a person out? You betcha! I was a stage 3, and of course the first thing we want to know is "How long do I have, Doc?" The stats for me were only 40% chance that Id be alive in 5 years. I can't imagine what it must feel like for you to probably get the feeling that your stats are lower than mine was. So, hey, you're flesh and blood, some of those emotional circuits are going to go into overload every so often. Go ahead, go into a vacant room somewhere and cry your eyes out if you have to now and then. Help your kids to understand that it's taking an enormous amount of strength, energy, and effort to beat the beast, and at the same time attempting to keep life normal like it used to be. Your present 'normal' if it's anything like mine was is total chaos. Take a deep breath, jk, you WILL get through all this, and you'll end up a better person for it. Your mettle is being tested.
    Keep in touch with this group, it helps enormously. Sorry if I've ran on too long,

    Carl
  • janie1
    janie1 Member Posts: 753 Member
    #6
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    neons356 said:

    Not stage 4 but...
    I'm a NED (no evidence of disease) stage 3 survivor, 53yo at the time diagnosed. Don't know what the case is for you but for me it was the first time in my life that MY mortality was standing right there in front of me. There it was- the truth of life is that we all die, and I was facing it a whole lot earlier than I was ready for. How can I die now? I don't have time to die, too many responsibilities, kids play or soccer game to attend, mortgage, a kid that I'm homeschooling. All of a sudden, there you are kinda face to face with the grim reaper and on top of it all you feel somewhat alone with it because until you're in this position you can't really understand what it's like.
    Do you think that all this just might freak a person out? You betcha! I was a stage 3, and of course the first thing we want to know is "How long do I have, Doc?" The stats for me were only 40% chance that Id be alive in 5 years. I can't imagine what it must feel like for you to probably get the feeling that your stats are lower than mine was. So, hey, you're flesh and blood, some of those emotional circuits are going to go into overload every so often. Go ahead, go into a vacant room somewhere and cry your eyes out if you have to now and then. Help your kids to understand that it's taking an enormous amount of strength, energy, and effort to beat the beast, and at the same time attempting to keep life normal like it used to be. Your present 'normal' if it's anything like mine was is total chaos. Take a deep breath, jk, you WILL get through all this, and you'll end up a better person for it. Your mettle is being tested.
    Keep in touch with this group, it helps enormously. Sorry if I've ran on too long,

    Carl

    Hi Jk
    Sometimes it feels so lonely. It is a long haul, no getting around it. It looks like you are about 7 months out from diagnosis. That is about when I started to get the most frustrated. But then it does get better. It does. March will be a year for me.

    Since the above replies have all been good, I'll add something different, focusing on what looks like some positives for you.
    The good thing is you were able to have your liver resected fairly quickly since your diagnosis.....i know it doesn't seem quickly to you, but in the scope of things, it is fairly soon....that's good.

    That is great that you're working, if you can. Some people are able to continue working, others find it doesn't fit. Flexibility is key, not all jobs can be flexible.
    Now..... since you have radiation coming up, that is another hill to climb. This is where people recommend that "taking one day at a time" advice, even more so.

    Finally, you've got a lot going on but the stress-level needs to be kept to a minimum. Wherever you can cut out stress....do it. Not every thing needs to get done anymore. You have new priorities, and that is you getting better, step- by- step. Everyone around you needs to get that. KEEP STRESS TO THE LOWEST LEVEL....whatever that is.

    Do more of what you really like to do with family/friends. :)
  • swimmer22
    swimmer22 Member Posts: 60
    #7
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    In life - actually everyone is Stage IV
    Try not to focus on the Stage IV ranking-- everyone, with or without cancer, is really the same. None of us know when our last day will be, if we will be killed by cancer, heart disease, an accident. Work to focus on the present and your mind will be less stressed and your overall attitude will be stronger. People are suffering from cancer, like me, yet I read terrible news of a young 24 year old being killed in an auto accident. I can strongly assume that poor young man had no idea when he awoke that morning that his time on earth was up. Stage IV is just a label of which no two people wear it the same. Enjoy life- soak up the sunshine and work to stay positive!
  • jk1959
    jk1959 Member Posts: 4
    #8
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    janie1 said:

    Hi Jk
    Sometimes it feels so lonely. It is a long haul, no getting around it. It looks like you are about 7 months out from diagnosis. That is about when I started to get the most frustrated. But then it does get better. It does. March will be a year for me.

    Since the above replies have all been good, I'll add something different, focusing on what looks like some positives for you.
    The good thing is you were able to have your liver resected fairly quickly since your diagnosis.....i know it doesn't seem quickly to you, but in the scope of things, it is fairly soon....that's good.

    That is great that you're working, if you can. Some people are able to continue working, others find it doesn't fit. Flexibility is key, not all jobs can be flexible.
    Now..... since you have radiation coming up, that is another hill to climb. This is where people recommend that "taking one day at a time" advice, even more so.

    Finally, you've got a lot going on but the stress-level needs to be kept to a minimum. Wherever you can cut out stress....do it. Not every thing needs to get done anymore. You have new priorities, and that is you getting better, step- by- step. Everyone around you needs to get that. KEEP STRESS TO THE LOWEST LEVEL....whatever that is.

    Do more of what you really like to do with family/friends. :)

    radiation
    Hi and thank you for the reply. So I have my appointment today with the radiation oncologist. For rectal cancer what can I or should I expect? I will be getting the radiation complemented with xeloda. I have a long commute to work(1 hour) will I be able to tolerate it? Time will tell for sure just wanting to here what others who have been through this before have to say.
    Thanks to all for the replies they have been helpful.
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #9
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    A little chemical
    Assistance to get over the hump might also be in order. Many of us have used it, and it just seems to even tne keel enough to get on with the business of living.

    Do you have a long term disability plan, either as an individual, or from your company? If so, now is the best time to review those documents and see where you would be if you retired. Check out the life insurance plan as well, it may have an early payout provision, as well as a provision to wave premiums. HR should know all the answers, but I found I needed to do my own due diligence, as our HR person had never dealt with any of this before and could have left me shorted several thousands of dollars if I had not pushed her in the right directions.

    Blake
  • jk1959
    jk1959 Member Posts: 4
    #10
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    neons356 said:

    Not stage 4 but...
    I'm a NED (no evidence of disease) stage 3 survivor, 53yo at the time diagnosed. Don't know what the case is for you but for me it was the first time in my life that MY mortality was standing right there in front of me. There it was- the truth of life is that we all die, and I was facing it a whole lot earlier than I was ready for. How can I die now? I don't have time to die, too many responsibilities, kids play or soccer game to attend, mortgage, a kid that I'm homeschooling. All of a sudden, there you are kinda face to face with the grim reaper and on top of it all you feel somewhat alone with it because until you're in this position you can't really understand what it's like.
    Do you think that all this just might freak a person out? You betcha! I was a stage 3, and of course the first thing we want to know is "How long do I have, Doc?" The stats for me were only 40% chance that Id be alive in 5 years. I can't imagine what it must feel like for you to probably get the feeling that your stats are lower than mine was. So, hey, you're flesh and blood, some of those emotional circuits are going to go into overload every so often. Go ahead, go into a vacant room somewhere and cry your eyes out if you have to now and then. Help your kids to understand that it's taking an enormous amount of strength, energy, and effort to beat the beast, and at the same time attempting to keep life normal like it used to be. Your present 'normal' if it's anything like mine was is total chaos. Take a deep breath, jk, you WILL get through all this, and you'll end up a better person for it. Your mettle is being tested.
    Keep in touch with this group, it helps enormously. Sorry if I've ran on too long,

    Carl

    Not stage 4 but
    Thank you Carl. well said.
    I have 3 children who have dealt with cancer and its effects for going on 8 years now when their Mother was diagnosed with brest cancer. She is a fighter and a survivor who also happened to steer me to this site. Point being our children have gone through this although my daughter(the youngest,now soon to be 15) really has not seen the effects of the treatments cancer patients go through. She is now. It breaks my heart. What you mention is exactly what I think of. Just wanted to say thanks for the comments.

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