New here and scared too

Wisp
Wisp Member Posts: 13
Hi. I was just diagnosed with stage 4 colon cancer. I didn't have a clue that I was ill - it is apparently growing fast. Doctor is starting me on chemo after the holidays. Trying to stay brave for my 19 year old son. I'm not sure what my journey will be like but trying to stay positive.

Does anyone ever go into the chat room here? I have not been able to get in although the ACS rep said it is a good one. Just want to hear others stories and be able to share ideas and get encouragement from others. There are too many things I can't discuss with my family for fear of bringing them down. I'd appreciate any feedback.
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Comments

  • tommycat
    tommycat Member Posts: 790
    Wisp, you will find many
    Wisp, you will find many people here, alive and kicking, who are went through Stage 4 cancer and its treatments. There are also many Stage 4 people who are currently in the fight.
    I was dx Stage 3 rectal in 2009, so your exp. will be different than mine, but what we all have in common is a desire to beat this horrible disease. I will support you in any way I can.
    Your Friend in California
  • plh4gail
    plh4gail Member Posts: 1,238
    Wisp
    Wisp, you have found the right place. We will be here for any questions and all the support you need. From from treatments, pain, foods, and even favorite brands of TP (which by the way will become very important to you). We share smiles and tears.

    plh4gail
  • abrub
    abrub Member Posts: 2,174 Member
    I used to be active in the chat room
    but reached the point several years ago where it was no longer useful. However, it was useful and a great resource for me for quite a while.

    I'm one of those stage 4 success stories, albeit with a colorectal cancer variant: appendix cancer. 4 1/2 years later, multiple surgeries, multiple chemos, and I'm doing great, with an excellent long-term prognosis.

    Your head is spinning - you will eventually settle down. Use all the resources available to you. We'll all answer any questions on any topic to the best of our abilities.

    You've found a group of understanding friends.

    Alice
  • buckeye2
    buckeye2 Member Posts: 428
    Wisp, i am sorry that you
    Wisp, i am sorry that you are having to go through all this. My husband and I are 7 mths post diagnosis and the days immediately following diagnosis were the worst thus far. After that there comes a point where the focus is more about living than dieing. During one part of this, our 19 year old daughter complained that we were leaving our kids out because like you, we didn't want to worry them. They want to be included so now I try to share more with her. One experienced wife told me I would get used to my new normal. I didn't believe her but the day to day responsibilities have a way of insuring that you keep moving one foot in front of the other. Here are my two favorites quotes that I learned on this Board that keep me going. "Feed the faith,starve the fear" and "This is a marathon, not a sprint". Lisa
  • tanstaafl
    tanstaafl Member Posts: 1,299 Member
    getting to know us, all about us
    A good way to generate relevant stories and suggestions is to tell your story and medical encounters. Anyone who answers, you can click on their "name" and see if they have posted their cancer story, their struggles and their progress. What continent are you from?
  • herdizziness
    herdizziness Member Posts: 3,624
    Hello there
    I didn't know I was ill either, I think a bunch of us didn't know when we were diagnosed at stage 4. I found it difficult to get into the chat room as well for months actually and I've been told it's working fine, so I don't know if it's the internet browser or what, then sometimes it worked just fine.
    I told my son the first week about my cancer, I brought up how far I was along into it (my doctor had given me 4 to 6 months with chemo, after chemo and surgery and more chemo, here I am, one year and 10 months later doing just fine and dandy) over the next week, we cried together, I told my daughter about 3 months later how bad it was, she was living in Ohio and I didn't want to tell her I was "dying" over the phone. We cried a lot when I did. But they all helped encourage me to keep going, to survive, along with the people here on the colorectal I received plenty of encouragement.
    I stayed strong for my family and they stayed strong for me, and we also all had our moments,(I don't know how many times I cried myself to sleep)nothings perfect in cancer land, and they would appreciate your discussing these things with them. For instance your chemo's, after you learn what they are and possible side affects you might have, it's always best to let the family know before they see it. Could be a shocker if mom's hair was to fall out and they had no idea (and no, not everyone's hair falls out, I still have my long hair that I had in the beginning)or if you lose weight (again, not a problem I had but many do)you don't want them thinking it's the cancer eating you up, you need to let them know it was the chemo causing loss of appetite, etc., in other words its best to discuss these things with them and even your worries, otherwise everyone is worried in their heads; too scared about bringing everyone else down to talk to one another. You have to let them know by talking, that it's okay to talk about it, so that they aren't just thinking about it, sometimes things are best discussed then held back.
    That's just my bit of advise.
    I'm sorry you have to be here, but you've found a good place for information about what is happening, to ask questions about side effects that others have experienced for the particular chemo's you are going to have and to just talk about it or even other things.
    My heart to you,
    Winter Marie
  • Goldie1
    Goldie1 Member Posts: 264 Member
    Hi Wisp...
    So sorry you had to come here but in the short time I have been on here, I have found this board to be full of the most helpful, compassionate, people you could ever talk to.

    My 53 year old husband is stage iv colon cancer with mets to the liver and was diagnosed last June. He also had no clue that he was ill. He has had radiation, chemo, and is now on a break as he waits for colon resection surgery at the end of January. Our children (19 & 24) are told everything about his treatment. They want to know and have been incredibly supportive.

    I have never been on the chat room here but I have found that if you ask anything on this board, you will get replies and a shoulder if needed.

    Take care,

    Ellen C.
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Welcome
    So sorry that you had to find us but you will get a lot of support and knowledge here so feel free to ask away. I've tried the chat when first joining, but it's all different types of cancers and thought (for me personally) that the message boards were best suited for what others could help with. We are here to help you.

    Kim
  • Wisp
    Wisp Member Posts: 13
    tommycat said:

    Wisp, you will find many
    Wisp, you will find many people here, alive and kicking, who are went through Stage 4 cancer and its treatments. There are also many Stage 4 people who are currently in the fight.
    I was dx Stage 3 rectal in 2009, so your exp. will be different than mine, but what we all have in common is a desire to beat this horrible disease. I will support you in any way I can.
    Your Friend in California

    Thanks
    I'm still learning my way around on this board. I haven't even gotten my port but that will be inserted in 2 days. They want to start chemo after the holidays. Not sure what side effects to expect but i'm hoping i'll be able to drive myself to the chemo as my son still doesn't like driving and just has a learners permit.
    I've noticed my family won't let me talk about it much because it gets them down. i realize that it's probably harder on them right now because i'm still a little in shock. but the doctor said he might be able to give me 2-5 years with the chemo. I really want to see my son graduate from college so that's my first goal.
    i want to be a fighter and not settle for the doctors diagnosis. And i'm not very religious so don't have that to turn to. How did you learn to accept and be positive about your diagnosis? I really want to enjoy the years i've got.
  • Wisp
    Wisp Member Posts: 13
    plh4gail said:

    Wisp
    Wisp, you have found the right place. We will be here for any questions and all the support you need. From from treatments, pain, foods, and even favorite brands of TP (which by the way will become very important to you). We share smiles and tears.

    plh4gail

    Thanks
    What is TP? I guess i have alot of lingo to learn. :) I really haven't had a chance to cry yet - my mother won't allow it and I'm currently having to stay with her while my home plumbing is being repaired. I feel like i want to cry at times but don't want to get caught up in self-pity. I'm afraid if I give in i won't be strong for the upcoming battle.
    As far as foods go, I'm still figuring that out. i had 2 sections of colon removed and everything seems to work differently now. But no pain right now thank goodness. It is in my liver but doctor says the chemo should help. I still need to attend a chemo class to find out how long chemo is effective and what my possibilities are. Do you get chemo several times?
  • Wisp
    Wisp Member Posts: 13
    abrub said:

    I used to be active in the chat room
    but reached the point several years ago where it was no longer useful. However, it was useful and a great resource for me for quite a while.

    I'm one of those stage 4 success stories, albeit with a colorectal cancer variant: appendix cancer. 4 1/2 years later, multiple surgeries, multiple chemos, and I'm doing great, with an excellent long-term prognosis.

    Your head is spinning - you will eventually settle down. Use all the resources available to you. We'll all answer any questions on any topic to the best of our abilities.

    You've found a group of understanding friends.

    Alice

    Thanks Alice
    I find that i really want to hear from others going thru this as well. I'm encouraged by your success and really hope for the same. Did you set goals to keep you positive? one of my goals is to see my son graduate from college in 3 years. Then of course I want to see him land a good job and be self-sufficient. It's just me and him and he needs to be able to take care of himself. I want to know that he'll be all right. This really hit him hard.
    My doctor doesn't want me to return to work since I had a very high stress job. So now i'm on short term disability for the duration of my chemo, when it starts. Then he wants me to go on permanent disability. i really don't know yet what i will do. i will miss working - all of my coworkers are friends. But it is stressful. I have a sister nearby and her family who are very supportive but i think it's going to be me who will have to be strong thru this.
    Sorry this is so disjointed. And thanks for your response.
  • buckeye2
    buckeye2 Member Posts: 428
    Wisp said:

    Thanks Alice
    I find that i really want to hear from others going thru this as well. I'm encouraged by your success and really hope for the same. Did you set goals to keep you positive? one of my goals is to see my son graduate from college in 3 years. Then of course I want to see him land a good job and be self-sufficient. It's just me and him and he needs to be able to take care of himself. I want to know that he'll be all right. This really hit him hard.
    My doctor doesn't want me to return to work since I had a very high stress job. So now i'm on short term disability for the duration of my chemo, when it starts. Then he wants me to go on permanent disability. i really don't know yet what i will do. i will miss working - all of my coworkers are friends. But it is stressful. I have a sister nearby and her family who are very supportive but i think it's going to be me who will have to be strong thru this.
    Sorry this is so disjointed. And thanks for your response.

    I think what you decide to
    I think what you decide to do at the work place is a personal decision but for my husband it was necessary to make a decision so that we could apply for the disability as it takes a minimum 6 months to process. We didn't want there to be a gap between end of sick leave and collection of disability. Because he made the decision early, there will be less than a couple week gap. I still have hopes that one day he will return to a workplace because I think that will help his emotional health. Lisa
  • plh4gail
    plh4gail Member Posts: 1,238
    Wisp said:

    Thanks
    What is TP? I guess i have alot of lingo to learn. :) I really haven't had a chance to cry yet - my mother won't allow it and I'm currently having to stay with her while my home plumbing is being repaired. I feel like i want to cry at times but don't want to get caught up in self-pity. I'm afraid if I give in i won't be strong for the upcoming battle.
    As far as foods go, I'm still figuring that out. i had 2 sections of colon removed and everything seems to work differently now. But no pain right now thank goodness. It is in my liver but doctor says the chemo should help. I still need to attend a chemo class to find out how long chemo is effective and what my possibilities are. Do you get chemo several times?

    TP=toilet paper :) that darn
    TP=toilet paper :) that darn chemo can cause some diarrhea like you've never known to have. But you may already know because of your surgery/resection. Not to scare you my dear, just all information I promise so cross that bridge and whatever other bridges you come to as they come. Everyones experience is different. Some people are able to work and go about their lives with much less symptoms. Glad to hear you already had surgery, do you have a colostomy? Or a temporary iliostomy? I had a temporary iliostomy which was reversed.

    Please allow yourself time to cry if cry is what you want/need to do. This is your cancer and you need to be able to help yourself through it. Don't they say a good cry is good for us from time to time? So cry and be sad you got cancer, then when the tears stop, you will straighten up and say I can do this, I am strong and ready to give it my all. I think we all have our pity party days and we often come here to vent it out and share our fears and ask questions.

    I also have children and I tried not to cry in front of them but some of my closer friends shared some tears with me, and it as healthy for them as it is you. Remember your friends need a way to get through your cancer too. They love you and are scared too. Let them help. And personally, I might encourage your son to practice driving. That can be the way he helps if you do need it. I was not able to drive after, but Raquel on here drove herself.

    For foods after resection? Everytime I think I have it figured out, I'm proven wrong. What or what not to eat, times to eat, how much to eat....I think when it's going to happen it's just that time. I don't know, and I'm still working on that.

    well, hugs to you and I will be here for you with the others, plh4gail
  • lauragb
    lauragb Member Posts: 370
    Wisp, I'm sorry you needed
    Wisp, I'm sorry you needed to join this forum. I am married and I have one child, a
    21 year old daughter. We have always been very close so my diagnosis (Stage 3 rectal) was
    very hard on her. To me, this is the hardest part, the worry about others being okay.
    You sound strong to me and you have goals to be here. I hope this forum gives you the support you need. Like others have said, the days surrounding the initial diagnosis were the worst for me. I didn't know how I'd get through. It is okay to cry and grieve for your life before cancer. For you, there are many Stage 4 survivors on here, amazing people. I hope that you have support from some friends too. Everyone needs someone to cry to before they pick themselves back up.

    Laura
  • abrub
    abrub Member Posts: 2,174 Member
    Wisp said:

    Thanks Alice
    I find that i really want to hear from others going thru this as well. I'm encouraged by your success and really hope for the same. Did you set goals to keep you positive? one of my goals is to see my son graduate from college in 3 years. Then of course I want to see him land a good job and be self-sufficient. It's just me and him and he needs to be able to take care of himself. I want to know that he'll be all right. This really hit him hard.
    My doctor doesn't want me to return to work since I had a very high stress job. So now i'm on short term disability for the duration of my chemo, when it starts. Then he wants me to go on permanent disability. i really don't know yet what i will do. i will miss working - all of my coworkers are friends. But it is stressful. I have a sister nearby and her family who are very supportive but i think it's going to be me who will have to be strong thru this.
    Sorry this is so disjointed. And thanks for your response.

    See if there is a Gilda's Club near you
    That is a wonderful organization for support and ideas.

    In answer to your questions, I don't know that I set any goals other than to get through the trials of treatment. However, I was told pretty early on by one of my drs that I should do well for the long term. My kids were either in college or had graduated when I was diagnosed, and very independent, which made me feel more secure. I knew that they could take care of themselves, and would take care of each other. I also have a wonderful husband who stayed by my side every step of the way.

    Regarding work - do what you can, and what is best for your mental state. The problem with permanent disability is it can change how you see yourself. I'm hoping that with treatment, you can get back to living the life you love.

    By the way, regarding resections: my colon was resected in 3 places. It took a while, but everything works perfectly now.

    We're cheering you on,
    Alice
  • lisa42
    lisa42 Member Posts: 3,625
    Hi Wisp
    Hi Wisp,

    Welcome to the board, even though it's not a place you want to have to be.
    I have three kids, ages 18, 16, & 11. I was diagnosed stage IV 4-1/2 years ago, so my youngest was just barely 7 then. I have found being honest and open with my family and also my kids was the approach that worked for my family and me. I don't burden the kids with all the details, but they've seen me cry and they've seen me be very strong. Most of the time I am pretty strong and positive, but it's just not good to keep everything inside you, Wisp. If you can't let it out around your mother, then it would be a good idea to see a counselor. I did for a short while & it was helpful for me to have a safe place to get my emotions out. Then I felt like I could go home and do a better job of holding it together with my family.

    Hugs and blessings to you-
    Lisa
  • eringray
    eringray Member Posts: 19
    hi wisp, i was
    hi wisp,
    i was diagnosed stage IV last year. i have two kids, 1 and 2. obviously i dont let my kids know anything about my cancer, they wouldn't undertand anyway. my mother is really the only person i talk to candidly about my feelings. i too dont want to burden people with my depressing condition. i found that most people cant handle it anyway. these forums are a huge help because you can vent, be angry, and say whatever you want without feeling guilty. just know there are people here willing to listen and offer advice if you need it :)
  • barbebarb
    barbebarb Member Posts: 464
    Don't be scared!
    Hi Wisp:
    I was diagnosed Stage IV in October by surprise! Stage I - 2008
    This forum is great for encouragement and knowlege which is
    power against this disease! It helped me to read encouraging stories,
    meditation, prayer and to go forward.
    A comfort level with your doctor is so important and surrounding yourself
    with supportive people.
    I am new to this but would love to chat.
  • sammer4u
    sammer4u Member Posts: 37
    barbebarb said:

    Don't be scared!
    Hi Wisp:
    I was diagnosed Stage IV in October by surprise! Stage I - 2008
    This forum is great for encouragement and knowlege which is
    power against this disease! It helped me to read encouraging stories,
    meditation, prayer and to go forward.
    A comfort level with your doctor is so important and surrounding yourself
    with supportive people.
    I am new to this but would love to chat.

    Diagnoised November
    I have through a bunch of similar stuff and waiting for Chemo to start next week. I was diagnosed with stage IV and was a shock to me as well. Currently I have an ostomy, just got a power port installed Wednesday and waiting for Chemo next Tuesday. The port was simple, I honestly do not recall anything. The last thing I recall is the doctor spreading out the surgery paper on my chest and then being back in my room. I was told I would be awake for the procedure, but not sure if I was. I feel like I was completely out. I was sore and sensitive in the chest area all day yesterday an today I have very little discomfort. Still know it is there but not bad. My process is going thru Chemo (F5U and Oxiplat) for two months, then a scan to check out the size of the tumors on the liver. They will perform surgery on the liver (hopefully a reversal of the ostomy at the same time) and then more than likely more chemo. My goal is to be back riding the Harley in late May early June. No plans so far as keeping me from it.

    Good luck with your procedures, keep your chin up... and always think positive thoughts. That is what I have been doing and that is what is keeping me motivated to move forward. I am actually anxious to get the chemo started.. which means things are starting and will be over quicker...

    Have a good weekend, and chin up!!!
  • golf_gal
    golf_gal Member Posts: 69
    Wisp said:

    Thanks
    I'm still learning my way around on this board. I haven't even gotten my port but that will be inserted in 2 days. They want to start chemo after the holidays. Not sure what side effects to expect but i'm hoping i'll be able to drive myself to the chemo as my son still doesn't like driving and just has a learners permit.
    I've noticed my family won't let me talk about it much because it gets them down. i realize that it's probably harder on them right now because i'm still a little in shock. but the doctor said he might be able to give me 2-5 years with the chemo. I really want to see my son graduate from college so that's my first goal.
    i want to be a fighter and not settle for the doctors diagnosis. And i'm not very religious so don't have that to turn to. How did you learn to accept and be positive about your diagnosis? I really want to enjoy the years i've got.

    scared
    Wisp, I'm sorry you are here. I'm new, but think I can say this. You should not drive to chemo. Many places prohibit it. It's not s good idea. Also, take charge and stand tall. Be in the best hands you can find. Trust is important believe me. Take notes, be calm, and ask anything and everything. Get your armor on and go kick butt. Have a bulldog mentality. The mind profoundly affects your body. Be gentle. Cry if u need to..no one can stop you. I'm on my second round of folfox6. Rectal in 08, met to lymph nodes in April. I'm here for you.