New here and scared too

2

Comments

  • LAF53
    LAF53 Member Posts: 60
    #22
    Wisp
    So many of us were diagnosed during a routine test.I was diagnosed stage 3 in June, I had surgery and have been on chemo for 4 months now. I have an 17 and 15 yr old at home. It's been quite difficult but doable. Stay positive and you'll get thru it all.

    I've never gone to a chat room, so I can't help you with that.

    Lydia
  • Wisp
    Wisp Member Posts: 13
    #23
    golf_gal said:

    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.

    Thanks for answering
    Unfortunately I don't have many resources for rides to chemo but the hospital is very close. I will be driving to work if no bad side effects. I really am wanting to return to work to keep busy. I'm also on folfox. How have you done on the chemo so far? I am going to check into the volunteer rides for my 5 hour chemo sessions.
    I haven't really had a chance to cry much - always too many people around and I'm afraid if I give in I will just start a pity party. I'm trying to stay strong and positive but sometimes thoughts get in the way. I was told that I can't have chemo if protein levels in my urine is +2 and mine were +1 for the first week. So I'm really praying the my kidneys behave because I really need the chemo to work.
    I'm encouraged by your progress and will definately work on the bulldog mentality! Thanks so much.
  • Wisp
    Wisp Member Posts: 13
    #24
    abrub said:

    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

    That is so good to know
    My resection was in 2 places and I'm still working on the regularity. :) My first goal is to be around to see my son graduate from college - he still has 3 years in Accounting. I think he is dedicated enough to see it through no matter what. I agree that permanent disability will just depress me. I need to stay busy because I've always worked and don't know what to do with my time at home. I'm planning my first outing to visit my coworkers today - they have all been calling me and have been very supportive. Thanks again for your encouragement.
  • Wisp
    Wisp Member Posts: 13
    #25
    eringray said:

    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 :)

    Thanks eringray
    My son is 19 and I'm an old 55 year mom raising him alone. He was hit hard at first but is being a real trooper now. I hope you're doing well in your treatments. I just started chemo yesterday and have a pump on right now for 3 days. My mother won't let me talk candidly - she won't allow me to get down at all. And the rest of the family is acting so sad and devastated that I can't really talk much with them either. I've been having to be strong for everyone, which has always been my role in this family. My brothers won't talk about it at all. So I image I'll be coming here to talk with others and try to be encouraging as well as I learn to adapt.
    Everything just happened so fast that I'm still adjusting myself. I was just diagnosed on Dec 1st and have already had resection colon surgery and started chemo. So many doctors visits, social workers, insurance contacts, etc. My head is still swimming! I'm a tough lady normally and have handled everything pretty good.
  • Wisp
    Wisp Member Posts: 13
    #26
    sammer4u said:

    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!!!

    Chemo started yesterday
    It was a breeze but took almost 5 hours. Be sure to bring a book and snacks if they let you. I applaud you wanting to get back on the Harley - go for it! I'm shooting for getting back to work late next month. They are falling apart at the job without me (I like to think so at least). :) My doctor will do another scan on my liver in 3 months as well to see how I'm doing. My tumors are very small but too many of them to remove. I just had a PET scan 2 days ago to see where else the cancer may have spread and I'm really crossing my fingers that it hasn't spread elsewhere.
    I think I'll be more positive once I can get out of the house and away from this awful daytime TV!!! I do not like being idle. I'm ready to get back into the swing of thing. Have been considering getting a small tattoo later on if the doctor okays it. Maybe that will be a reward after I get off chemo.
    I wish you good luck on your chemo. It does feel good to be doing something positive about this disease. And the powers that be are always finding new drugs so I'm hoping for good things in the future.
  • Wisp
    Wisp Member Posts: 13
    #27
    LAF53 said:

    Wisp
    So many of us were diagnosed during a routine test.I was diagnosed stage 3 in June, I had surgery and have been on chemo for 4 months now. I have an 17 and 15 yr old at home. It's been quite difficult but doable. Stay positive and you'll get thru it all.

    I've never gone to a chat room, so I can't help you with that.

    Lydia

    Good to hear from you
    I've given up on the chat room. This discussion board seems to be full of good encouragement now. I just started my chemo yesterday and so far so good. Do you have someone you can talk to? My son is wanting to be open about everything - he's being a real trooper at 19. He's growing up so fast through this. I hope your kids are doing all right with it and being supportive for you. I think we really need to try to be positive through this. Glad to hear that you are doing okay.
    Have you had any reactions to the chemo or is it going smoothly for you? I'm really hoping that I won't have any side effects that will keep me from returning to work. I was actually looking forward to getting a wig but the doctor told me that my regimen of chemo will only thin my hair out. :) I was going to be a redhead!
  • golf_gal
    golf_gal Member Posts: 69
    #28
    Wisp said:

    Thanks for answering
    Unfortunately I don't have many resources for rides to chemo but the hospital is very close. I will be driving to work if no bad side effects. I really am wanting to return to work to keep busy. I'm also on folfox. How have you done on the chemo so far? I am going to check into the volunteer rides for my 5 hour chemo sessions.
    I haven't really had a chance to cry much - always too many people around and I'm afraid if I give in I will just start a pity party. I'm trying to stay strong and positive but sometimes thoughts get in the way. I was told that I can't have chemo if protein levels in my urine is +2 and mine were +1 for the first week. So I'm really praying the my kidneys behave because I really need the chemo to work.
    I'm encouraged by your progress and will definately work on the bulldog mentality! Thanks so much.

    new
    I didn't cry, but everyone is different. If you need it, cry in the shower. My suggestion would be to get a big plastic bat and literally beat a pillow til you're tired. U have to find a few minutes alone somewhere. The folfox6. + avastin is not fun, but not horrible. My Dr prescribed marinol which is synthetic thc....helped with Compazine. After surgery they cut the avastin. I have 4more treatments. Fatigue, neuropathy, and naseau are chief complaints. But I'm alive and find a reason to smile everyday. Where are you now with your treatment. I'll pray your kidneys behave. Ask me anything, I'm an open book.
  • Patteee
    Patteee Member Posts: 945
    #29
    Hi
    I am 3.5 years out from
    Hi
    I am 3.5 years out from treatment and free of this beast. Stage 3B, Dx's May 08. First I drove myself to and from treatments almost all the time. Hospital and clinic is less than a mile- even drove myself 2 out of 3 times I was hospitalized with chemo issues. I actually preferred to go alone- when others went I felt like I had to entertain them, found it so much more helpful to me to just sleep, watch TV or read. Driving became more of an issue later in treatments and only for longer distances- walking from the parking lot was always a pain in the butt because I was so weak.

    I found my family's presence- 3 kids, a mother, 2 sisters- to be very valuable. They cooked, cleaned, ran errands, my mom would lay on the bed with me and we would watch, "Desperate Housewives". I even had a co worker come over and clean my kitchen and bathroom. I didn't have the need to actually talk to them, felt like living the day to day stuff was more than enough. As I got sicker through chemo, they were here more often. I do remember there being a sense of this was just a stage in my life to help me through. My oncologist always took the positive side, always.

    I wish you a rested and yes, even joyful holiday. You will find and experience the bumps on the journey- what helped me the most was to focus only on the moment, to not look back and to be real careful on looking ahead.
  • LAF53
    LAF53 Member Posts: 60
    #30
    Wisp said:

    Good to hear from you
    I've given up on the chat room. This discussion board seems to be full of good encouragement now. I just started my chemo yesterday and so far so good. Do you have someone you can talk to? My son is wanting to be open about everything - he's being a real trooper at 19. He's growing up so fast through this. I hope your kids are doing all right with it and being supportive for you. I think we really need to try to be positive through this. Glad to hear that you are doing okay.
    Have you had any reactions to the chemo or is it going smoothly for you? I'm really hoping that I won't have any side effects that will keep me from returning to work. I was actually looking forward to getting a wig but the doctor told me that my regimen of chemo will only thin my hair out. :) I was going to be a redhead!

    people to talk to
    This is a good place. i'm lucky I have a grown up daughter who is a nurse. I can say anything to her, guess she has heard it all. she also comes with me to dr appointments and tests etc. My husband listens but doesn't hear what i say. My oldest daughter only wants to stay positive, arrrgh. my middle daughter cries. And the 2 youngest at home try to play keep away from me. i think it scares them a little too much. I use face book I have a count down of days left of chemo. i've such supportive group there. i try to keep all the facebook stuff positive.
    you have to be positive and take care of yourself. Chemo side effects are different for everybody. i've gotten some that are unusual. right now I have such bad neuropathy in my fingers I have to wear gloves while I type. I've had 2 blood clots in my right leg, have terrible jaw pain for 12 days after infusion and slur my words to the delight of my teenage daughters. i even had pre skin cancer on my nose. i cut my hair chin length and it is quite thin, i dries very quickly now. But nobody notices. unless I drop hair in their food.
    Sorry you are a member here. Just like I'm sorry all these people have to come here. Cancer sucks.
    lydia
  • Nana b
    Nana b Member Posts: 3,030 Member
    #31
    Patteee said:

    Hi
    I am 3.5 years out from
    Hi
    I am 3.5 years out from treatment and free of this beast. Stage 3B, Dx's May 08. First I drove myself to and from treatments almost all the time. Hospital and clinic is less than a mile- even drove myself 2 out of 3 times I was hospitalized with chemo issues. I actually preferred to go alone- when others went I felt like I had to entertain them, found it so much more helpful to me to just sleep, watch TV or read. Driving became more of an issue later in treatments and only for longer distances- walking from the parking lot was always a pain in the butt because I was so weak.

    I found my family's presence- 3 kids, a mother, 2 sisters- to be very valuable. They cooked, cleaned, ran errands, my mom would lay on the bed with me and we would watch, "Desperate Housewives". I even had a co worker come over and clean my kitchen and bathroom. I didn't have the need to actually talk to them, felt like living the day to day stuff was more than enough. As I got sicker through chemo, they were here more often. I do remember there being a sense of this was just a stage in my life to help me through. My oncologist always took the positive side, always.

    I wish you a rested and yes, even joyful holiday. You will find and experience the bumps on the journey- what helped me the most was to focus only on the moment, to not look back and to be real careful on looking ahead.

    Welcome and sorry for your
    Welcome and sorry for your DX. I am also stage 4 and worked and drove to chemo and 2 hours back and forth to work. T It was hard but it can be done. At least I did it. I have been in remission (NED) for a couple years now. My CEA has been rising a bit but my scans are fine. So, there is hope out there. Take a big breath and jump in and fight. You will find lots of help here.

    Take care of your body. It's important.
  • abrub
    abrub Member Posts: 2,174 Member
    #32
    Wisp said:

    Thanks eringray
    My son is 19 and I'm an old 55 year mom raising him alone. He was hit hard at first but is being a real trooper now. I hope you're doing well in your treatments. I just started chemo yesterday and have a pump on right now for 3 days. My mother won't let me talk candidly - she won't allow me to get down at all. And the rest of the family is acting so sad and devastated that I can't really talk much with them either. I've been having to be strong for everyone, which has always been my role in this family. My brothers won't talk about it at all. So I image I'll be coming here to talk with others and try to be encouraging as well as I learn to adapt.
    Everything just happened so fast that I'm still adjusting myself. I was just diagnosed on Dec 1st and have already had resection colon surgery and started chemo. So many doctors visits, social workers, insurance contacts, etc. My head is still swimming! I'm a tough lady normally and have handled everything pretty good.

    It's tough having to be strong for everyone else
    when we are the ones who need the support. However, it's common - others need us to be strong to allay their fears. What about OUR fears? We're the ones with cancer.

    Don't feel badly if you can't be strong for others - you have to take care of yourself first. If people can't cope with your situation, that is their problem. At least you have this forum to come to - we all understand.

    I, too, was diagnosed at 55, my daughter still in college. Now, 4 1/2 years later, I've seen my daughter graduate and my son get married. So far, all is good.

    Alice
  • Wisp
    Wisp Member Posts: 13
    #33
    golf_gal said:

    new
    I didn't cry, but everyone is different. If you need it, cry in the shower. My suggestion would be to get a big plastic bat and literally beat a pillow til you're tired. U have to find a few minutes alone somewhere. The folfox6. + avastin is not fun, but not horrible. My Dr prescribed marinol which is synthetic thc....helped with Compazine. After surgery they cut the avastin. I have 4more treatments. Fatigue, neuropathy, and naseau are chief complaints. But I'm alive and find a reason to smile everyday. Where are you now with your treatment. I'll pray your kidneys behave. Ask me anything, I'm an open book.

    I'm still on first chemo
    I return to get my avastin unhooked today and will be free from this pump for 2 weeks. So far the only side effect is the tingling fingers from the cold. Maybe I don't need to cry to get it out after all. Unfortunately I can't get mad either. I'm on bipolar meds for my depression and they keep me pretty level. So I just worry alot and seeth a little. :) I have gotten in touch with a contact from CanCar and she informed me that I might be able to outlive the 2-5 years. Even a chance is worth aiming for. That made me smile.
  • Wisp
    Wisp Member Posts: 13
    #34
    abrub said:

    It's tough having to be strong for everyone else
    when we are the ones who need the support. However, it's common - others need us to be strong to allay their fears. What about OUR fears? We're the ones with cancer.

    Don't feel badly if you can't be strong for others - you have to take care of yourself first. If people can't cope with your situation, that is their problem. At least you have this forum to come to - we all understand.

    I, too, was diagnosed at 55, my daughter still in college. Now, 4 1/2 years later, I've seen my daughter graduate and my son get married. So far, all is good.

    Alice

    That is so good to hear!
    We are alike in that regard, 55 with one in college. I really am aiming for being around for his graduation and then - to see him settled in a good job. You have really encouraged me!
    I think this forum is a good place to allay some of my fears. So far, I've really been encouraged. I haven't felt like blaming anyone or railed at God or given into despair. So things are looking up. Still in a little bit of shock but I'm adjusting now. Hearing others' successes really makes a big difference to me.
    Did your daughter get a job and settle down? It's just me and my son so it's important that he be self-sufficient.
  • Wisp
    Wisp Member Posts: 13
    #35
    Nana b said:

    Welcome and sorry for your
    Welcome and sorry for your DX. I am also stage 4 and worked and drove to chemo and 2 hours back and forth to work. T It was hard but it can be done. At least I did it. I have been in remission (NED) for a couple years now. My CEA has been rising a bit but my scans are fine. So, there is hope out there. Take a big breath and jump in and fight. You will find lots of help here.

    Take care of your body. It's important.

    Thanks
    I really want to drive myself to my chemo as well as get back to work. I understand that it may be hard but if others like you can do it, then so can I. I don't want to let this beat me. Congratulations on doing so well. I hope to mirror your success and dedication.
  • golf_gal
    golf_gal Member Posts: 69
    #36
    Wisp said:

    I'm still on first chemo
    I return to get my avastin unhooked today and will be free from this pump for 2 weeks. So far the only side effect is the tingling fingers from the cold. Maybe I don't need to cry to get it out after all. Unfortunately I can't get mad either. I'm on bipolar meds for my depression and they keep me pretty level. So I just worry alot and seeth a little. :) I have gotten in touch with a contact from CanCar and she informed me that I might be able to outlive the 2-5 years. Even a chance is worth aiming for. That made me smile.

    chances
    Of course you can beat this. That's the mentality you need to have. You may feel down sometimes but hope is always there. Everytime I pass a mirror I look into my eyes and say I am healthy. And mean it. Chemo is no walk in the park, but you have youth on your side. Don't be afraid as that just causes paralysis. See yourself whole and healthy....truly embrace the idea. I forgot are you on folfox6? I have four more to go then I'm done. I've healed pretty well from lymph node removal and the path showed onlydead cancer cells. So the chemo got it in June. We are all in this together. Always reach out. Remember, too, there are those worse than you, and just know there is a mind/body connection.
  • Wisp
    Wisp Member Posts: 13
    #37
    golf_gal said:

    chances
    Of course you can beat this. That's the mentality you need to have. You may feel down sometimes but hope is always there. Everytime I pass a mirror I look into my eyes and say I am healthy. And mean it. Chemo is no walk in the park, but you have youth on your side. Don't be afraid as that just causes paralysis. See yourself whole and healthy....truly embrace the idea. I forgot are you on folfox6? I have four more to go then I'm done. I've healed pretty well from lymph node removal and the path showed onlydead cancer cells. So the chemo got it in June. We are all in this together. Always reach out. Remember, too, there are those worse than you, and just know there is a mind/body connection.

    Thanks!
    Yes I'm on folfox6. And I'm no spring chicken - I'm 55. :) But everyone's encouragement has really helped. I'm not so scared anymore and really am getting motivated to beat this thing. This is a wonderful community and it really helps to talk it out with others like me who are winners. Thanks so much for your pep talk.
  • GoBucks
    GoBucks Member Posts: 28
    #38
    Understand
    Wisp I understand, I'm a recent Stage IV too and I've been through 4 rounds of chemo. Luckily I'm tolerating it fairly well. I have an 18 year old getting ready to graduate high school and a 21 year old college senior also graduating in May, plus a wedding in Sept. I plan to be here for it all, so I'm fighting hard but I still get really scared and I sometimes think too much about this thing. My family is nothing but positve but everyone is dealing differently. They all hate seeing me cry since that is something I didn't do before the diagnosis. I've been blessed by the people who have helped me and my faith has definitely deepened. One of the most frustrating things is people say ,oh you look so good, I believe we'll both get so we can walk one day at a time.
  • abrub
    abrub Member Posts: 2,174 Member
    #39
    Wisp said:

    That is so good to hear!
    We are alike in that regard, 55 with one in college. I really am aiming for being around for his graduation and then - to see him settled in a good job. You have really encouraged me!
    I think this forum is a good place to allay some of my fears. So far, I've really been encouraged. I haven't felt like blaming anyone or railed at God or given into despair. So things are looking up. Still in a little bit of shock but I'm adjusting now. Hearing others' successes really makes a big difference to me.
    Did your daughter get a job and settle down? It's just me and my son so it's important that he be self-sufficient.

    My daughter settle down? Ha!
    As I write, she's in an airplane, heading back to northen India to continue working on educational materials for a Tibetan university. She's been in India most of the time since graduating in 2009, but plans to come back to the states for grad school in September.

    She's also an international pop star, and has been living quite an adventurous life. Settled down? Not very likely, but mostly self-supporting. However, we're very proud of her many accomplishments, even tho they are far from the "norm." She is very self-sufficient.

    Our son is nicely settled, married and in a great job. So I'm comfortable with where both kids are.

    And in the spring, for my 60th birthday, I have a major vacation planned! Look to the future - don't ever give up on it!

    Alice
  • golf_gal
    golf_gal Member Posts: 69
    #40
    Wisp said:

    Thanks!
    Yes I'm on folfox6. And I'm no spring chicken - I'm 55. :) But everyone's encouragement has really helped. I'm not so scared anymore and really am getting motivated to beat this thing. This is a wonderful community and it really helps to talk it out with others like me who are winners. Thanks so much for your pep talk.

    age
    I'll be 55 in June. That is young. So you do have youth on your side. Spring chicken....spring chicken!!! LOL. Where did your cancer spread to, Wisp, if you mentioned it I missed it. Don't even think of those numbers. Really, easier said than done. When u feel upset, log on here. It will help you. Read everything you can and know all you can. You will feel empowered. The neuropathy with hands and feet is not fun. But st least we have two and and two feet!!! I'm in your court here. My cell is 8503628035 if you want to text or call me. In the meantime have fun with the holidays. I know you are not religious, but we all have a maker, and are loved. There's lots of denominations, maybe one is your fit. Faith helped me. Well get through this, hour by hour at times and day by day most of the time. Do you enjoy walking? Your friend, Jamie Hornburg.
  • golf_gal
    golf_gal Member Posts: 69
    #41
    abrub said:

    It's tough having to be strong for everyone else
    when we are the ones who need the support. However, it's common - others need us to be strong to allay their fears. What about OUR fears? We're the ones with cancer.

    Don't feel badly if you can't be strong for others - you have to take care of yourself first. If people can't cope with your situation, that is their problem. At least you have this forum to come to - we all understand.

    I, too, was diagnosed at 55, my daughter still in college. Now, 4 1/2 years later, I've seen my daughter graduate and my son get married. So far, all is good.

    Alice

    candid
    Wisp, with your cancer being the elephant in the room, that has to be hard. But if you can somehow bring it up, I think things would get better. Everyone is scared of course, but not being able to communicate and forced to be silent doesn't help. That in itself would be more stress on you. If your family knows you are strong, that may help them. Are there any caregiver support group near? Just a suggestion.

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