Im New here (Natalie)

braelee2
braelee2 Member Posts: 130
edited March 2014 in Colorectal Cancer #1
Im 37 I have 4 children (20,14,11,&3) I just got colon cancer in August they removed it and I start chemo on Oct 4th. I get my port in about a week. this has been such a big blow. I feel like I can't even breath or sleep. I am so scared whats to come. Im really scared about loseing my hair. Everytime I talk or think about it I cry. Im trying to stay strong and positive for my family but it is really hard...
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Comments

  • PGLGreg
    PGLGreg Member Posts: 731
    You have our best wishes.
    You have our best wishes. You might not lose your hair during chemotherapy -- not everyone does. So you've already had surgery to remove the cancer?

    --Greg
  • big hug
    I know just how you are feeling. I was diagnosed in February and have now just finished cycle 11 of my chemo. I cried a lot at the start as I have 2 children and all I could think about was staying well for them. Chemo has been tough. My hair didn't all fall out. It just thinned and now that has even stopped even though I am still having chemo. I have rarely been able to post on this board as I have been too tired but reading the daily posts has really given me the strength to get through the chemo. You can do this and you are not alone. I have been completely open with my children from the start and they have been fantastic. I have my last chemo in 2 weeks and then we are off on a family holiday to the South of France (we live in Switzerland).
    Big hugs, Anne xxxxxx
  • biglaur
    biglaur Member Posts: 72 Member
    I'm sorry you had to find us
    but you will find lots of compassion and information and friendship here. The unknown is difficult...it becomes less frightening as you become educated. This site will be helpful. I had so many misconceptions about chemo...I thought my hair would all fall out and I would throw up all the time and that would be it...well, my hair "thinned" but never all went away and I didn't throw up one time. Lots of other fun things happen...but stay strong and take 'em on one at a time...you'll do great! Keep asking questions...it's the best way to prepare yourself for what comes next. Laurie
  • Nana b
    Nana b Member Posts: 3,030 Member
    biglaur said:

    I'm sorry you had to find us
    but you will find lots of compassion and information and friendship here. The unknown is difficult...it becomes less frightening as you become educated. This site will be helpful. I had so many misconceptions about chemo...I thought my hair would all fall out and I would throw up all the time and that would be it...well, my hair "thinned" but never all went away and I didn't throw up one time. Lots of other fun things happen...but stay strong and take 'em on one at a time...you'll do great! Keep asking questions...it's the best way to prepare yourself for what comes next. Laurie

    You will be fine! Keep
    You will be fine! Keep posting we are here for you; you are not alone. We have all been there and done that...and most of us are still here, please focus on most of us. Yes, for whatever reason, we lose our friends, can't change that. I honestly believe most of us are living then dying...hang in there. Hugs and Hugs again!
  • mark440
    mark440 Member Posts: 63
    Welcome!!
    You have come to the right place!!!! So many questions ,concerns, fears will all be answered here... Good luck! These are the best people in the world!!! They will be your second family...
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Hi Natalie
    So sorry for your diagnosis, but you have landed in the right spot by stopping in here.

    We can all relate to the fear this brings. I have no experience with chemo (personal choice) but there are lots of folks here who can help you with any questions you have.

    As for your hair, it is not a foregone conclusion that you will lose it. But if you should you there are some organizations which help cancer patients get wigs. Who knows you may be one of those people who looks great bald!

    Seriously, there are lots of wonderful folks on here who will be glad to help you navigate thru this.

    Wishing you best results with the chemo. Keep coming back here so we know how you are doing.

    Hugs

    Marie who loves kitties
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    Hi Natalie
    Just wanted to welcome you to the site. Your amongst great people, please dont be afraid to ask any questions you need to. Hugs Sonia
  • iluvmms
    iluvmms Member Posts: 134 Member
    Sonia32 said:

    Hi Natalie
    Just wanted to welcome you to the site. Your amongst great people, please dont be afraid to ask any questions you need to. Hugs Sonia

    hello
    I was diagnosed at 38 in july of 2009, i didnt loose my hair, thined some though. I wa stage 4 and had bowel resection, and liver resection, and I am done with chemo and in remission, so keep your chin up!! We are all here ofr you and in the same boat.

    Christy
  • taraHK
    taraHK Member Posts: 1,952 Member
    Welcome
    Welcome to this board although I am sorry you have cause to be here.

    Your fear and anxiety are of course completely normal. Keep breathing OUT as well as in! Don't be afraid to ask your docs for some mild/temporary medicine for anxiety or sleep if you feel that might be helpful.

    Do you know yet what drug combination you will be on? Most of the chemo "cocktails" for colorectal cancer do NOT cause complete hair loss. Many people experience some hair thinning.

    I found it helpful to be open with my children when I was diagnosed. They were 10 and 12. They are now turning 18 and 20 and boy have I loved every minute of being with them these past 8 years -- even all the horrors of raising teenagers! They have been my prime motivation in my fight.

    Strong and positive is GOOD. The occasional meltdown is also good. Lean on your loved ones and allow them to give you the support you need and deserve -- and which of course they want to give. (OK - I am really bad at that part! But trying and getting better)

    I wish you all the best.
  • lizzydavis
    lizzydavis Member Posts: 893
    taraHK said:

    Welcome
    Welcome to this board although I am sorry you have cause to be here.

    Your fear and anxiety are of course completely normal. Keep breathing OUT as well as in! Don't be afraid to ask your docs for some mild/temporary medicine for anxiety or sleep if you feel that might be helpful.

    Do you know yet what drug combination you will be on? Most of the chemo "cocktails" for colorectal cancer do NOT cause complete hair loss. Many people experience some hair thinning.

    I found it helpful to be open with my children when I was diagnosed. They were 10 and 12. They are now turning 18 and 20 and boy have I loved every minute of being with them these past 8 years -- even all the horrors of raising teenagers! They have been my prime motivation in my fight.

    Strong and positive is GOOD. The occasional meltdown is also good. Lean on your loved ones and allow them to give you the support you need and deserve -- and which of course they want to give. (OK - I am really bad at that part! But trying and getting better)

    I wish you all the best.

    Natalie,
    You can do this!

    Natalie,

    You can do this! It seems awful when you first hear about it but you will get through this. Concentrate at the light at the end of the tunnel. You will go through this treatment and look back at it when it is over. Yes, you can get through it. We are here for you!

    Lizzy
  • sasjourney
    sasjourney Member Posts: 395 Member
    Hi Natalie
    I am sorry that you had to join our board, but this board has been such a help for me and I have met some wonderful people. These people really understand what you are going through. I am 44 and have 2 daughters (14 and 9) and was diagnosed in March 2010. I have good days and bad, but I try to focus on the present and my blessings. The "what ifs" are too painful so you have to just focus on today and you will get through. Ask any questions and you will find answers here. There are lots of long term survivors that are great to hear from, too.

    Hugs,
    Sara
  • Kerry S
    Kerry S Member Posts: 606 Member
    old man advantage
    Natalie,

    Yeah this cancer bit sucks big time. We all have two options here. One is to convince yourself that it is all over but the shouting. The right option is to look at the monster straight in the eyes and fight like hell.

    You will also find that we have lots of loving folks that will provide you comfort on this site. Some, like me, will give you a kick in the **** if we don’t feel your positive attitude vibes coming through.

    This is a fight you can win as you are young and strong. Hell, I am winning and I am an old guy. Now old guys never worry about how we look or smell. We don’t even shave if we don’t feel like it. I would wear a pair of jeans until they will stand up by themselves, but the scary old woman hides them from me. I call that the old man advantage.

    Don’t worry about things like your hair. Spend your body’s energies wisely and spend them on only what is really important. Like your life!!!!

    Your hair can’t hug your kids. Only you can hug them.

    Kerry
  • lisa42
    lisa42 Member Posts: 3,625 Member
    hello
    Hi Natalie,

    I'm glad you reached out here on this board. Yes, it's very scary at first, but know that here on the CSN board we've all been through what you have been going through. What stage are you? It doesn't sound like it's spread to anywhere but the colon since you didn't mention it- is that right? If it's caught in the early stages (especially stages I and II), you have a very, very good chance of complete recovery. I know it's still very scary, though.
    I was diagnosed in August 2007 at age 41 as stage IV rectal cancer. I'm also a mom- my kids are 17,14, & 10. The cancer was already in my liver and both lungs at the time of diagnosis. Now, three years later, I'm still here- God continues to sustain me and I still feel pretty normal most of the time other than a handful of days after chemo. I have a neighbor who had stage I colon cancer 8 years ago and is cancer free today. She actually had rectal cancer, not colon, so they did radiation on her and her tumor disappeared. She gets follow up checks and scans and has remained fine to this point.

    So far as losing your hair, it may thin some, but most do not lose all their hair on the chemos used for colon cancer. Are you going to take Folfox (oxaliplatin, leucovorin, and 5FU)? That's what is usually given when first fighting colon or rectal cancer. Sometimes Folfiri is given (irinotecan- also called Camptosar or CPT-11-, leucovorin, 5FU). Honestly, the oxaliplatin in the Folfox is harder to deal with than the Folfiri is. The oxaliplatin can cause neuropathy (tingling, numbness in hands and feet) and oversensitivity to cold. You'll need to be careful on that. Start taking vitamin B-6 and alpha lipoic acid capsules to help prevent the neuropathy.

    You will be okay- you will get through this- keep coming back here for support, questions, and to vent anytime you need to.

    Take care and God bless-
    Lisa
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    Welcome Braelee2
    Just wanted to welcome you and tell you that we all understand how scarey all of this stuff can be. We have been there/done that and we are here to help you and others have a little more ease going through chemo etc.

    The very best of wishes for you.

    -Pat
  • khl8
    khl8 Member Posts: 807
    Jaylo969 said:

    Welcome Braelee2
    Just wanted to welcome you and tell you that we all understand how scarey all of this stuff can be. We have been there/done that and we are here to help you and others have a little more ease going through chemo etc.

    The very best of wishes for you.

    -Pat

    Welcome! You will find the
    Welcome! You will find the people on this board to be an inspiration during your fight. We are at all differnet stages here, some new, some old, some still in treatment, some done. Anything you want to know and there will be answers here for you. Come to get answers and you wil find that you end up with true friendships and supporters. You are not alone in this fight!!!
    Kathy
  • braelee2
    braelee2 Member Posts: 130
    Kerry S said:

    old man advantage
    Natalie,

    Yeah this cancer bit sucks big time. We all have two options here. One is to convince yourself that it is all over but the shouting. The right option is to look at the monster straight in the eyes and fight like hell.

    You will also find that we have lots of loving folks that will provide you comfort on this site. Some, like me, will give you a kick in the **** if we don’t feel your positive attitude vibes coming through.

    This is a fight you can win as you are young and strong. Hell, I am winning and I am an old guy. Now old guys never worry about how we look or smell. We don’t even shave if we don’t feel like it. I would wear a pair of jeans until they will stand up by themselves, but the scary old woman hides them from me. I call that the old man advantage.

    Don’t worry about things like your hair. Spend your body’s energies wisely and spend them on only what is really important. Like your life!!!!

    Your hair can’t hug your kids. Only you can hug them.

    Kerry

    Thanks
    Kerry
    Thanks you made me laugh and cry. but alot u said hit home.
  • braelee2
    braelee2 Member Posts: 130
    lisa42 said:

    hello
    Hi Natalie,

    I'm glad you reached out here on this board. Yes, it's very scary at first, but know that here on the CSN board we've all been through what you have been going through. What stage are you? It doesn't sound like it's spread to anywhere but the colon since you didn't mention it- is that right? If it's caught in the early stages (especially stages I and II), you have a very, very good chance of complete recovery. I know it's still very scary, though.
    I was diagnosed in August 2007 at age 41 as stage IV rectal cancer. I'm also a mom- my kids are 17,14, & 10. The cancer was already in my liver and both lungs at the time of diagnosis. Now, three years later, I'm still here- God continues to sustain me and I still feel pretty normal most of the time other than a handful of days after chemo. I have a neighbor who had stage I colon cancer 8 years ago and is cancer free today. She actually had rectal cancer, not colon, so they did radiation on her and her tumor disappeared. She gets follow up checks and scans and has remained fine to this point.

    So far as losing your hair, it may thin some, but most do not lose all their hair on the chemos used for colon cancer. Are you going to take Folfox (oxaliplatin, leucovorin, and 5FU)? That's what is usually given when first fighting colon or rectal cancer. Sometimes Folfiri is given (irinotecan- also called Camptosar or CPT-11-, leucovorin, 5FU). Honestly, the oxaliplatin in the Folfox is harder to deal with than the Folfiri is. The oxaliplatin can cause neuropathy (tingling, numbness in hands and feet) and oversensitivity to cold. You'll need to be careful on that. Start taking vitamin B-6 and alpha lipoic acid capsules to help prevent the neuropathy.

    You will be okay- you will get through this- keep coming back here for support, questions, and to vent anytime you need to.

    Take care and God bless-
    Lisa

    Hi
    Im at stage 3B and the tumor went through my colon wall and attached itself to my pelvic wall. I'm going for a Cat Scan and A Pet Scan on the 13 to make sure its no where else.
    And on Oct 4th I start Chemo (Folfox).Thank you for all the info.
  • CherylHutch
    CherylHutch Member Posts: 1,375
    Hey Natalie!
    Sorry.. in the other post of yours asking about hair, I called you Braelee and now see your name is actually Natalie :)

    Girl, you have come to the right place! You are really scared, the fear of losing your hair, although may sound like vanity speaking is actually a very real and normal fear. Every time you think about "I have cancer! I have to go on chemo! I am going to be sick and weak!", is it any wonder you break down and cry every time??

    The good news is, you are here on a support board where we all have been through the exact same fears and have been terrified. Until most of us found this board and found there are a LOT of people who were going through the same thing we were and came out just fine, there was nothing to ease those fears. Family and friends are great... but they don't really know what we are feeling and there's nothing they can say or do to ease those fears so we feel isolated. But you have made the first step to getting rid of those fears... and that is finding this board.

    So, first things first... breathe. Big deep breaths. Allow yourself to admit that you have cancer... but cancer is no longer the end of the world. If you were diagnosed with Diabetes in August, would you be terrified that you were going to die? No. Because you know diabetes can be treated and monitored so there's not need to be scared, you just have to buckle down and do what needs to be done to get the diabetes under control... and yes, you will have to live with it for the rest of your life but you will be living WITH diabetes not dying from it.

    That is how you have to look at your cancer. You are young. You have a long road of work as a mother ahead of you, so you have to buckle down and either get rid of your cancer (depending what stage it is) and if it is Stage IV, then fine... you have to just learn to roll with the punches and make sure you are getting the treatments you need to keep this monster under wraps and in control :) Diabetes is a monster, so is cancer... both have to be tamed and kept under control at any given time :)

    So, in the other post you mentioned you will be getting a port put in and then chemo starting in October. Here's a few pointers to ponder:

    1) The insertion of the port is a "day surgery"... you go in, they give you the sleepy meds where you wake up not realizing you've had the procedure done. Some people go right to sleep and don't remember the procedure at all. If you are like me, I was wide awake for the whole procedure despite the meds... but they freeze the area so well, there was no pain involved until later when the freezing came out. Then, it wasn't so much "pain" as an "ache" that lasted a couple of days. I couldn't lift my arm without causing the ache... but like I say... that only lasted a couple of days. After that, you will be SOOOOO GLAD your oncologist ordered the port to be put in. When you are getting hooked up to the chemo, there were others in the chemo unit who didn't have the port and were getting their chemo via intravenous in their hand or arm... and they looked SOOOO uncomfortable. You will be thankful for your friend, the port :)

    2) The chemo unit. This is where you go for a couple of hours every two weeks to get intravenous chemo before they hook you up to a little portable pump that looks like a baby bottle that you get to wear for 48 hours. The chemo unit staff (chemo nurses/technicians) are absolutely fantastic!! Seriously, they are the most caring, wonderful people who know their business and know what to look for. If you have ANY questions, no matter how small or insignificant... do not be afraid to ask them.. they are a wealth of information. When you finish chemo, it never fails... you are going to miss the staff and the chemo unit like you wouldn't believe. You won't miss the chemo... but you'll miss the caring and wonderful attention of these guys and gals.

    3) The chemo pump. Hate it... it's a pain! Nothing wrong with it, it doesn't hurt, nothing like that... it's just a total pain and inconvenient. You are hooked up to it for 48 hours every two weeks so that you can go home. Oh sure, you can walk around with it, leave the house, drive, whatever... just get yourself a fanny pack so you can carry it around in a fanny pack. Or, one of those water bottle holders that you can attach to a belt and the pump goes in, just like a water bottle. But it's the little things that are annoying... trying to shower with it and not get it wet. Sleeping with it (whoever thought sleeping with a baby bottle was so annoying??) But, knowing that the meds in this bottle are killing off cancer cells... you just put up with the inconveniences of the bottle.

    4) Chemo reactions. Everyone is different. Some are really affected by it and others are not. I fell in the middle. It didn't stop me from doing anything I wanted to do. There were a couple of days each cycle that I was more tired than usual, so I'd make sure I allowed myself to take naps as needed. Nausea was not a big deal for me... it never really got bad but then at the sign of nausea I would take meds so that it wouldn't develop into anything. I had no hair "loss" per se... just thinning that I noticed, but no one else did. I did get neuropathy in my feet which is a numbing/tingling feeling... that did get worse over time. The Oxypilatin is the nasty one... it can give you a real sensitivity to cold while you are on it... but as soon as you are on a break after the 48 hours, that sensitivity goes away. So you really are only putting up with it for 2 days or so.

    Ok... that's the basics. As you think of it, you are going to have lots of questions... so feel free to ask them here. ALSO... BIG TIP... when you go to your various doctors' appts (of which there will be many), take a notepad, and better yet, take someone with you. It will be amazing how much you DON'T hear, yet a second set of ears will pick up on and remind you what the doctor said or didn't say. As you come up with questions, write them down... trust me, you won't remember them when you go to see your doctors, so take your notepad with them to the appts.

    Welcome aboard... although I really wish you didn't have to join us!

    Cheryl
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    khl8 said:

    Welcome! You will find the
    Welcome! You will find the people on this board to be an inspiration during your fight. We are at all differnet stages here, some new, some old, some still in treatment, some done. Anything you want to know and there will be answers here for you. Come to get answers and you wil find that you end up with true friendships and supporters. You are not alone in this fight!!!
    Kathy

    Natalie...This is the Old Man of the North...
    and I did the Folfox myself....Didn't lose my hair, it did thin a little as others have said but only a little. Now, as you settle in with the knowledge that this is very manageable after you get your head wrapped around it you will be much more sane...Its the fear of the unknown that haunts you, but if you stay in here and read, study, ask plenty of questions, you will find that you can have peace and comfort living with this.
    First off, it really soothes your soul if you find the times to vent, but try and make them minimal if possible. Don't keep from venting , just try and "control" it. The biggest problem I had with all of this is loss of control. But, with the knowledge of all the people in here and the time spent within I gained enough knowledge to understand my disease much better and the ways of dealing with it that helps me continue to live and be for the most part happy in my "new normal". Its just something that you have to come to terms with. Your kids will be fine as long as you are fine, and when you get a grasp on things you will be ok. You just have a lot of processing and a lot of reading..(in here ) to learn all you can about what your doing and how to go about it.
    Do Not and I repeat Do Not go out in cyberspace and read survival rates and percentages...they are mostly all 3-8 years old and there are new medicines and practices coming for this everyday so "out there " will scare you to death, stay away. You will find all the correct information you need in here to aid you in the flurry of Dr appts that come with this, and in hopes of opening up a new verbage that you can share with your family, Drs and Nurses, and even with your subconscious that actually makes you feel better because now you have answers, in other words, you have your "CONTROL" back.
    Attitude is a large amount of how your journey will be through this. We will laugh with you, cry with you, share all of our stories with you, but mostly we will support you and your family. When you enter through these gates you become instant family, and we are very protective of our family. All of us here will be with you in every step and help guide you so that your journey is as easily done as possible with as less stress as possible. There is a caregivers thread, a spirituality thread, all different types of threads for the whole family that helps in sharing information on how others cope with this and the effects that this disease has on family members other than the actual patient. All these grouped together make the finest condensed version of " The Layman Medical Journal" that you could possibly ever have access to. Use it to your advantage and you will be much happier and a lot more detailed in what to look for and what to expect in this journey.....
    Now as we tell everyone else that comes in here, BREATHE, and we will start the task of kicking this "little turds butt" and get on with our life....and never stop planning for anything, for to stop planning is to quit, and we don't take no for an answer in here......Now, let tha butt kickin commence !!!...Love to you and yours, Buzz
  • braelee2
    braelee2 Member Posts: 130
    Buzzard said:

    Natalie...This is the Old Man of the North...
    and I did the Folfox myself....Didn't lose my hair, it did thin a little as others have said but only a little. Now, as you settle in with the knowledge that this is very manageable after you get your head wrapped around it you will be much more sane...Its the fear of the unknown that haunts you, but if you stay in here and read, study, ask plenty of questions, you will find that you can have peace and comfort living with this.
    First off, it really soothes your soul if you find the times to vent, but try and make them minimal if possible. Don't keep from venting , just try and "control" it. The biggest problem I had with all of this is loss of control. But, with the knowledge of all the people in here and the time spent within I gained enough knowledge to understand my disease much better and the ways of dealing with it that helps me continue to live and be for the most part happy in my "new normal". Its just something that you have to come to terms with. Your kids will be fine as long as you are fine, and when you get a grasp on things you will be ok. You just have a lot of processing and a lot of reading..(in here ) to learn all you can about what your doing and how to go about it.
    Do Not and I repeat Do Not go out in cyberspace and read survival rates and percentages...they are mostly all 3-8 years old and there are new medicines and practices coming for this everyday so "out there " will scare you to death, stay away. You will find all the correct information you need in here to aid you in the flurry of Dr appts that come with this, and in hopes of opening up a new verbage that you can share with your family, Drs and Nurses, and even with your subconscious that actually makes you feel better because now you have answers, in other words, you have your "CONTROL" back.
    Attitude is a large amount of how your journey will be through this. We will laugh with you, cry with you, share all of our stories with you, but mostly we will support you and your family. When you enter through these gates you become instant family, and we are very protective of our family. All of us here will be with you in every step and help guide you so that your journey is as easily done as possible with as less stress as possible. There is a caregivers thread, a spirituality thread, all different types of threads for the whole family that helps in sharing information on how others cope with this and the effects that this disease has on family members other than the actual patient. All these grouped together make the finest condensed version of " The Layman Medical Journal" that you could possibly ever have access to. Use it to your advantage and you will be much happier and a lot more detailed in what to look for and what to expect in this journey.....
    Now as we tell everyone else that comes in here, BREATHE, and we will start the task of kicking this "little turds butt" and get on with our life....and never stop planning for anything, for to stop planning is to quit, and we don't take no for an answer in here......Now, let tha butt kickin commence !!!...Love to you and yours, Buzz

    Thanks
    Thanks Buzz your comment went straight to my heart,