New to Group. Stage IV looking for support

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Good morning. 

I have been searching for over a week to find a group where there were other Stage IV colon cancer patients.  I was diagnosed at age 34 with Stage 2B in my colon.  Had that lovely surgery we all hated followed by FOLFOX for 12 treatments.  The likilihood of it coming back was less than 15%.  Well back in July (only a year and half after I finished my treatments), it had come back.  But it moved into my lungs and on my adrenal gland.  At 37, as a single mom of a wonderful 10 year old, I was told I had a few months to a few years to live.  So now I am fighting to make it to my kid's graduation from High School, and that is a long shot.  I am on FOLFIRI now.  My PET scan at 3 months into treatments was at least a 75% reduction in energy uptake.  My 6 month CT scan showed the masses had shrunk slightly or stayed the same.  So they took me of the Iritatican (sp?).  Friday I will be going onto treatment #15 of a lifetime of treatments. 

I would really like to talk to other Stage IV patients.  How do you deal with being in this situation?  I am managing fairly well.  But it would be nice to know I am not in it alone.  It would be nice to know that I am not the only one fighting for every day.

Thanks for welcoming me into the group!  I look forward to being a member. 

https://hopeinallforms.wordpress.com/

Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Welcome to the forum

    You are definitely and sadly not alone in your journey.  There are many in life and many here on the forum who are Stage IV and fighting to live each day. 

    Most of us are not as young as you are. My heart goes out to you, being a young mother. Being a mother myself, I remember too many nights of weeping at the thought of leaving my two boys, even though they are both adults. 

    I'm in a little different situation as you are, being NED.... well, I hope. I get my scan and blood work results on the 13th.....

    How do I cope? I decided early on that if I was going to die (you know its all about thinking you are going to die, when you are first diagnosed) then I was going to do my best to LIVE until I died. I decided that I would LOVE life. I live in a remote and small Nevada communtiy; not much opportunity to travel, so I found myself a wonderful little canyon and I have made it mine (in my head). I go there as much as I can because it rejuvinates me. In my humble opinion, it keeps me alive. 

    I believe it is important to find something that you absolutely love and enojoy it. Of course, you have to take your age and responsibilities into perspective. I'm old, so I can up and out whenever I want. Being a young mother, no doubt working as well, you have commitmnets that you have to take into account.  But, even with that, you can find something that brings you joy. 

    The bad thoughts will come, so you have to roll with them, but not for long. I made a goal to weep and worry for 10 minutes a day and then I made myself get past that by using guided meditation, meditation. 

    Find what works for you personally.  

    Life is about living. 

    I look forward to getting to know you. 

    TRU

     

  • IcyMoonstone
    IcyMoonstone Member Posts: 41
    edited February 2017 #3
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    Trubrit said:

    Welcome to the forum

    You are definitely and sadly not alone in your journey.  There are many in life and many here on the forum who are Stage IV and fighting to live each day. 

    Most of us are not as young as you are. My heart goes out to you, being a young mother. Being a mother myself, I remember too many nights of weeping at the thought of leaving my two boys, even though they are both adults. 

    I'm in a little different situation as you are, being NED.... well, I hope. I get my scan and blood work results on the 13th.....

    How do I cope? I decided early on that if I was going to die (you know its all about thinking you are going to die, when you are first diagnosed) then I was going to do my best to LIVE until I died. I decided that I would LOVE life. I live in a remote and small Nevada communtiy; not much opportunity to travel, so I found myself a wonderful little canyon and I have made it mine (in my head). I go there as much as I can because it rejuvinates me. In my humble opinion, it keeps me alive. 

    I believe it is important to find something that you absolutely love and enojoy it. Of course, you have to take your age and responsibilities into perspective. I'm old, so I can up and out whenever I want. Being a young mother, no doubt working as well, you have commitmnets that you have to take into account.  But, even with that, you can find something that brings you joy. 

    The bad thoughts will come, so you have to roll with them, but not for long. I made a goal to weep and worry for 10 minutes a day and then I made myself get past that by using guided meditation, meditation. 

    Find what works for you personally.  

    Life is about living. 

    I look forward to getting to know you. 

    TRU

     

    Thank you.   I like the

    Thank you.   I like the weeping 10 minutes every day.  I have been in this battle for over 7 months now (friday is #15 treatment).  I have made a bucket list and am trying to get some of the local things done, like going whale watching, taking a cooking class, etc.  I am working on my Will and my Advanced Directive now.  I am still responding well to treatments but I think I will feel better having that done. 

    I love horseback riding.  The anemia got so bad that I needed to drop the lease on the horse I was riding.  However a friend is letting me help with her horse.  It isn't the same but it is the best I can do right now. 

    I am trying to live and love each day.  I am trying to give my kid as many memories as she can have with me.  I am starting a journal to keep letters to her, just in case.  And also include a scrapbook of the fun stuff we have done. 

    I am working full time as a safety manager.  Trying to balance everything is tough. 

    I guess I just need to know there are some that have beat the statistics.  I need to know that I am not the only one out there doing this fight.  I don't know anyone that is currently doing this fight, only those that lost it and they are gone.  I need to feel that there are ways to beat the odds. 

    And I am glad to have found this place where I can do such things.  Thank you all!! 

  • blessed39
    blessed39 Member Posts: 90 Member
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    "How I Beat Stage Four Colon Cancer"

    Dear Icymoonstone.

     If you would be interested in reading my story "How I Beat Stage Four Colon Cancer" just go to my page

    blessed39 and click on blog and my story will come up. I don't give medical advice, just what worked for me. God bless

    blessed39

  • IcyMoonstone
    IcyMoonstone Member Posts: 41
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    blessed39 said:

    "How I Beat Stage Four Colon Cancer"

    Dear Icymoonstone.

     If you would be interested in reading my story "How I Beat Stage Four Colon Cancer" just go to my page

    blessed39 and click on blog and my story will come up. I don't give medical advice, just what worked for me. God bless

    blessed39

    Thank you

    Thank you!  I use my blog to minster to people as well.  I am painfully honest about my struggle and hopes and fears.  I admit that it is in God's hand and if His will is for me to not survive this, then He has an amazing awesome reason for it.  But there are times of weakness and I need to be reminded that there is a possible good outcome for this.  I have responded well to 6 months of treatment.  I am now in maintenance treatments.  But being a single parent of a young-ish (she would yell at me for saying that of her) makes me so scared of what can happen to her. 

    I took 2-3 months to mourn and come to grips with the fact that I might die.  I took that time to be honest with myself and those around me.  I am just coming out of that.  I don't cry at the thought of it any more.  I am putting things in place.  I am working on a journal/scrapbook for kiddo incase this doesn't end with me getting to ring the cancer survivor bell.  Then she will always have my words and love with her. 

    I just need to be reminded sometimes there are good results out there.  I know noone doing the same fight as me.  I know noone with colon cancer.  I am in a bubble with no one to look to remind me that the fight is worth it. 

    So I thank you for your words of encouragement.  I thank you for reaching out! 

  • Joan M
    Joan M Member Posts: 409 Member
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    There are many survivors on

    There are many survivors on this forum, and reading their stories has been very helpful to me.  I was diagnosed at stage 4 last year, and have been very lucky to have good results from the chemo I recieved with very few complications. 

    It sounds like you have had good results too.  The doctors and researchers are always developing new treatments, so maybe they will find a way to cure us. 

    I sympathize with you worrying about your daughter.  I have 4 children, 3 are adults, my youngest is 15 years old.  It has been hard on him, and I worry about what happens to him if I die before he graduates.  He has always been so close to me, being the baby of the family.  I have encouraged him to stay busy and enjoy his highschool years as much as he can.  It is fun for me watching him in his activities.  He loves choir and theatre.  He is growing up so fast, and will be traveling with his theater group to New  York City next month, and to Scotland this summer.  I didn't want him going to Scotland, but it is in his heart to travel the world, just as I have wanted to do throughout my life.  I don't want to hold him back, he is so full of life - I want him to enjoy everything as he would if I were not sick.   

    I also enjoy time with the rest of my family, especially my grandchildren.  My granddaughter has spent the night with me this week because she has a new baby sister who gets all the attention at home.  She has really brought joy to my life!   I got really lonely being home alone all day recovering from my liver ablation the last couple of weeks.   I live in North Dakota, and we have another cold spell, so it is not very pleasant to go places when the temps fall below zero.  I am lucky to have such a sweet granddaughter who likes to spend time with me.  She wants to bake this afternoon, so I better get on that before the day is gone.

    I heard the same dismal prospects as you last year - 6-18 months, maybe 3 years if you are lucky.....

    My doctors now say they expect that I will live for many more years.  That is my hope and prayer - that I have MANY years of life ahead of me! 

    Good luck to you in your treatments! 

    Joan

  • IcyMoonstone
    IcyMoonstone Member Posts: 41
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    Joan M said:

    There are many survivors on

    There are many survivors on this forum, and reading their stories has been very helpful to me.  I was diagnosed at stage 4 last year, and have been very lucky to have good results from the chemo I recieved with very few complications. 

    It sounds like you have had good results too.  The doctors and researchers are always developing new treatments, so maybe they will find a way to cure us. 

    I sympathize with you worrying about your daughter.  I have 4 children, 3 are adults, my youngest is 15 years old.  It has been hard on him, and I worry about what happens to him if I die before he graduates.  He has always been so close to me, being the baby of the family.  I have encouraged him to stay busy and enjoy his highschool years as much as he can.  It is fun for me watching him in his activities.  He loves choir and theatre.  He is growing up so fast, and will be traveling with his theater group to New  York City next month, and to Scotland this summer.  I didn't want him going to Scotland, but it is in his heart to travel the world, just as I have wanted to do throughout my life.  I don't want to hold him back, he is so full of life - I want him to enjoy everything as he would if I were not sick.   

    I also enjoy time with the rest of my family, especially my grandchildren.  My granddaughter has spent the night with me this week because she has a new baby sister who gets all the attention at home.  She has really brought joy to my life!   I got really lonely being home alone all day recovering from my liver ablation the last couple of weeks.   I live in North Dakota, and we have another cold spell, so it is not very pleasant to go places when the temps fall below zero.  I am lucky to have such a sweet granddaughter who likes to spend time with me.  She wants to bake this afternoon, so I better get on that before the day is gone.

    I heard the same dismal prospects as you last year - 6-18 months, maybe 3 years if you are lucky.....

    My doctors now say they expect that I will live for many more years.  That is my hope and prayer - that I have MANY years of life ahead of me! 

    Good luck to you in your treatments! 

    Joan

    Giving Hope!

    Thank you so much.  I had been looking for a support group around me for Stage IV, and all I could find was things for breast cancer.  I actually became quite angry about it.  Granted colon cancer isn't as "pretty" in advertisement. (chuckling) 

    It is so helpful to hear other people with the same report make it out alive.  All I can find is the horrible statistics of survival.  When I look on the internet for good news, I can't find any.  I do use mindfulness and it helps a lot.  But want some real life encouragement to keep fighting and trying.  I just want to see my girl graduate High School, but that is over 7 years away.  And right now that feels like an impossibility.  However, with hearing from all of you, it is feeling more possible.  I feel like the fight I am doing is worth it. 

    Another pet peeve is how stories like to use cancer as a plot point on TV and movies.  I watch those things to help me forget, not to get reminded about the horrible possibilities. 

    It could also be because I am struggling with Anemia.  I have plenty of iron, but the anemia isn't low enough yet for the "beesting shot" as I call it.  I go to bed at 630 most nights and sleep for 10-12 hours, but it is never enough.  They tell me there is nothing I can do, it is a side effect of the chemo and cancer.  But I would love to have energy back and to not feel so cold all the time!

    Sorry I am grumbling now.  I am getting tired as it is the end of the work day here.  Just have to fight through the next hour and half. 

    Thanks for listening

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited February 2017 #8
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    Hi Icy, I was not initially

    Hi Icy, I was not initially diagnosed with stage four but now have mets so in my mind that's stage four. For some reason they don't change the diagnosis from the initial one. The anemai sound rough. I've also been struggling with fatigue and being cold and have pretty much kept myself at home so far this winter unless I haveto go to work. And at work I have a little heater sitting by me or I'm so cold. My onc said it's from metabolism changes. Apparently it's also why I don't lose weight. I'm about 35 pounds heavier than I should be but hardly eat and have no appetite and it doesn't make any sense. Stupid cancer, it affects so many other areas besides the original one.

    Try to read what you find on the internet with a skeptical eye. Much of it is old information, dramatically written, or not even true at all. There are some really great people on here who have done their research and have good information. And much of it is pretty positive. I'm not great at doing research so I count on the people who are good at it. Other mebers on here are also a good source. It's much better to hear it from someone who has experienced something than your doctor who only draws from their pateints and likely didn't have the time to hear the whole story if they were told it and many patients dont tell them everything.

    There is always hope. There are new ideas coming up all the time and people are working on it daily. I just read yesterday that the university of Calgary has just identified a protein that is responsible for metastasizing cancer cells from the original tumour. This L-plastin spreads cancer cells and they've found a molecule within it that they say can be switched off using an inhibitor peptide. They think it will be useful in preventing the spread of a number of cancers including colon.

    I agree with you about the stories and movies where someone has cancer. I think they see it as the ultimate sad story and so its easy to use. I get all 'oh yeah, of course they have cancer' in my head when I see this. I wish they could come up with something new to use. I remember when my mom was diagnosed with pancreatic cancer. A couple of nights later I was reading a Steven King book and that exact cancer was mentioned and the character was thinking 'well, at least that's a quick one'. It was like a punch in the gut. I'd been trying to tell myself that my mom was going to beat it. 

    And, yeah, I get annoyed with all the breats cancer stuff. Every cancer needs to be represented but I get sick of the pink crap. Sure, boobs are sexier than bums when it comes to cancer, but there are plenty of other cancers out there! I will sometimes joke that I never thought I'd have anything in common with Farrah Fawcett but now I do. Our cancer colour is royal blue. So the first year after I was diagnosed I got a deep blue betta fish, a Siamese fighting fish. I kind of feel like he's my little totem. 

    Anyway, welcome to the board and I'm sorry you have the need to be here but I'm glad you found it. There are really good people on here and several with stage four who've been around for a long time. You may never get to say your beat your cancer, you might have to live with it. I so wanted to beat mine but recently realized that living with it is what my life is going to be and I've had to accept that that's okay. As long as they can stay on top of it and I'm still around at least I have that. My life will never be the same as it was but that's my new normal and it's okay. I used to be a person who couldn't sit still, I had to always be busy and always getting things done. I could never understand people who sit around watching TV and being lazy. Now I'm one of them. I am learning to accept it but it's hard. I kept thinking that one of these days I'll get some energy and start working out and get myself healthy again and it's not going to happen. I try not to dwell on it. The worst part is that I'm often too tired and weak to feel comfortable to ride my horse. I've had him for fifteen years. I don't like not wanting to go out and ride or even to just visit him many days. It makes me angry at myself and sad that one of my greatest joys has been affected. He came to visit me at the hospital when I was in the ICU after my blood clot/stroke/cardiac arrests which I get into the details of but my daughter brought him to see me. How cool is that?

    Jan