Stage IV's please respond...

marym29
marym29 Member Posts: 71 Member
edited March 2014 in Colorectal Cancer #1
WOW... where do I begin here...

Well hi everyone! My name is, Mary, and my mom was diagnosed with stage IV colon cancer at the end Jan. 06 with met to her liver and lungs. I plan on being there for her every step of the way; and am trying to keep a positive outlook in all of this... it's really hard you guys! Plan on seeing/hearing A LOT of me from her on out!

For at least a year she was having cramping and irregular bowels (yeah, yeah, she should have said something... we all know this now).

She was at work when she was getting weird symptoms: heart palpetations, the sweats, a slight heart burning feeling, and her color was really off. Her boss had her rushed to the hospital. After a CT scan, MRI scan, and blood work; she heard the word "cancer" - she prefers to call it "cancun" (now that's a word, huh?) ;)

They attempted a colonoscopy; to find a blockage (the cancer) in her colon. That night she was admitted to the hospital. Never having surgery in her life; that Wed. she had surgery (colon resection & no bag) and sailed through it with flying colors. Went home that Sun. and for the next couple of days seemed to be doing OK.

The following week she started having nausa, the chills, and running a fever. We were scheduled to go and see her oncologist that next Mon. to discuss treatment. But from her symptoms and the way she looked; he decided to admit her and do another CT scan and MRI scan.

Poor thing, from her surgery an abcess formed (answers to those earlier symptoms). They tried with putting drains in her and it wasn't working like they had planned; so they did surgery again and she now has a colostomy bag (she's not liking this at all; but we've managed to tell her that it is really keeping her alive; and giving her colon a "major" rest for the time being). Plus, I watched the ostomy nurse clean and change her bag; not a big deal at all (I told my mom as she was getting it changed for the first time and I was holding her hand!)

It's Tues. 3/7/06 and I see and talk to her everyday. She said that her surgeon said she could probably go home tomorrow. She's scared of this bag, she's scared because her husband isn't well all of the time either. We almost lost him last year (pancreatic attack) and lost his son to suicide. But isn't it true that "God doesn't give you more than you can handle?"

This woman worries "more" about everyone else but herself. I'm scared from what I've read about the various kinds of chemo treatments related to this type of cancer. She seems SO weak now and I just hope and pray that she will be strong - mentally & physically - for these upcoming chemo treatments.

During her first surgery they inserted a "port" for chemo so they don't have to stick her everytime; we all like that. And from the beginning of all of this I haven't once seen her cry. She still has a very positive attitude, wants to be here, and talks about the future all the time.

I call her husband all of the time, too - he needs the support just as much, I feel. I've also decided to attend support groups with my husband regarding this matter - since I have been a real "bear" lately! ;)

OMG...sorry to babble on and on here everyone! I'm just hoping to make some life-long friends here and create a support system for me and my family so...

Chapter (2) coming soon! ;)
Mary

Comments

  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #2
    Hi Mary and welcome to our family. I am in oz but don't let that scare you off gal. I cannot help with the colostomy questions...I am one of the luckier ones....but hey, plenty here have been down that road and I am sure their advice will be forthcoming.
    "it's really hard you guys!".....sure is Mary and I can tell you that being a carer, spouse or family member is just as difficult as being a patient.Just coming here and sharing with us is a great step towards understanding many of the things that are still unknown to you which you will face in the future. You have also shown the courage to join a support group and I think the benefits will help you cope. It is also said many times here that the people like yourself trying to comfort and support the person with cancer also need to be aware that this can be a draining experience.
    Unfortunately, there is generally no quick fix as with other diseases and the length of time for ongoing support can really take its toll. This means that YOU must also look after yourself and your own family, personal matters. You will be of no value to your mum if you neglect your own life....nor would she want you to do so. You said, " This woman worries "more" about everyone else but herself". Not unusual for a loving mum...my mum was the same as she battled a brain tumour.
    What you must do is affirm to her that you are keeping yourself active, healthy and will be able to cope with her illness. At the same time Mary....don't supress your emotions...a few tears are a healthy thing...then you get on with things. Be as open as you can with your hubby, her hubby....and her as well. Your mum seems to be a very strong lady but also be aware that "we all" from time to time have "hit the wall". As time progresses emotions can change...look out for this and compensate for it.
    I often use the word "understanding"....now that is a very elusive word to deal with...it all takes time and a lot of patience.
    Btw....I was stage 2, resected, 6 months chemo. It was not fun but endureable with the support of everyone including our wonderfull "family" here on CSN. Good luck, best wishes and keep us informed.
    huggs, Ross and Jen ......from "upside down land"
  • fedester
    fedester Member Posts: 753 Member
    #3
    hi mary,
    welcome to our family. you have come to the right place for support and knowledge. we have alot of great people here fighting this dragon. i had a bag for approx 4 months while my colon rested. it does take getting used to. thru this whole adventure a positive attitude goes a long way with dealing with this disease. come here often and ask questions, come here to vent and cry, we have all been there.
    all the best
    bruce
  • helpjoy
    helpjoy Member Posts: 7
    #4
    Hi Mary. My name is Joyce, a colon cancer survivor in remission now three years. I too had similar systems and the emergency surgery although I woke with the colostomy bag. This has been a very difficult road. My youngest Son Mark has been my caregiver through the rough times. I am sure he would like to give his feelings may be to help you also. Please let me know your Mother's name. Just take one day at a time, or one moment. Take it slow. I hope you will have the best medical team along the way as I did and still do.Right now my prays are with you, your Mother and your family. I will try to keep in touch with you and respond to your any questions or concerns as you follow each day. Take care. Joyce
  • Unknown
    Unknown
    #5
    This comment has been removed by the Moderator
  • nanuk
    nanuk Member Posts: 1,358 Member
    #6
    Your post brings back many unpleasant memories-especially right after my surgery, and the adjustment to my permanent colostomy. Bottom line: a person with a colostomy can do everyting they did before the surgery. It took me a long time to adjust, but there are many ostomy sitesout there that helped me with product troubleshooting, support, and general information that helped me "tweak" my appliance, and make the necessary adjustments which eventually made my ostomy trouble free. two references to get you started: www.ostomy.evansville.net and www.ostomyinternational.org/forums.htm

    bud
  • aussiecrawl
    aussiecrawl Member Posts: 15
    #7
    Hi Mary,

    It's understandable that your mum is worried about her colostomy bag. I'm not sure what they do where you are from, but when my dh had his colostomy (permanent), the hospital arranged for a stoma nurse to visit at home, until he felt confident enough to maintain the bag himself. It didn't take him long, but I think it really helped that he had the stoma nurse visit to make sure he was doing everything right.

    He calls it his bumbag now (anyone over 40 will remember what a bumbag was) and he is very confident with it.

    Don't forget to take care of yourself as well, it can be very difficult at times being a carer.

    Take Care
    Maria
  • jerseysue
    jerseysue Member Posts: 624 Member
    #8
    I have stage IV and also have a bag. I felt just like your Mom I was disgusted by the bag and told my husband that I couldn't change it and I didn't want to touch the thing. My husband was the best while in the hospital he cleaned the bag and was so loving and tender. I can laugh now because I remember even if there was a tiny bit coming out I would say ok clean it out and he would. After a few weeks yes it took me a few weeks (more like a month) I came out of the bathroom and told him that I cleaned it myself and he was a bit hurt that I was taking care of myself. Now it is there and a part of me. I can tell you that I still hate the thing but I know it is there for a reason. Now about the cancer after chemo I started eating really healthy all kinds of veggies I eat them raw, steamed, roasted anyway you can think of I eat them. I don't eat any meat and as of now I'm not missing it. So keep posting and you'll find most of the answers to all of your questions and also your Mom's. Take care and lots of luck. Sue
  • Kanort
    Kanort Member Posts: 1,272 Member
    #9
    Welcome Mary,

    First, I am sorry for your mother's diagnosis but how blessed she is to have you as her advocate. The road you both are beginning to embark is not one without bumps. However, we will be with you all the way....sometimes with answers to questions and sometimes with just comforting words. I think going to a local support group will also be benficial. I attended one for a year and have just recently stopped due to work and family obligations that keep me away. I will keep you and your mother in my heart and prayers.

    Hugs,

    Kay
  • scouty
    scouty Member Posts: 1,965 Member
    #10
    Mary,

    You will find this is a great site with wonderful people where there is always someone who has gone thru or going thru what your and your mother will.

    I am a fellow stage iv survivor with mets to liver (3) and lung (1). My colon perforated before my cancer was found and I got a tempy colostomy bag. I was dx Feb 2004. Did folfox 6 with avastin for 8 months. It was not longer shrinking anything and the side effects were really getting to me. I found a clinical nutritionist (she is also a naturopathic doctor) and stopped chemo and completely changed my lifestyle starting with my diet. That was mid Nov 2004. August 2005, I heard the word NED for the first time as the tumors shrunk out of sight for the CT scan to pick up. I was never able to have any cancer surgery due to how spread out the tumors were until Jan. of this year.

    The surgeon removed the foot of my colon that included the original rectal mass, all lymph nodes, gave a thorough look at my liver, and reversed my colostomy bag. My liver was clean, as were all the lymph nodes but they did find a very small tumor where the original mass had been but it was 1/20 of it's original size (we will never know if it was shrinking or growing......bottom line, it is GONE).

    I must admit that living without the colostomy bag is much more difficult then learning to live with it was!!!!!!!!!!! Every once in a while I actually miss it.

    Tell your mom, the bag is an incovenience but it does make chemo easier and you get thru your CT scans quicker. Also be sure and tell her how many stage iv survivors you are meeting on this site. I am one of many!!!!!!!!!

    Lisa P.
  • KathiM
    KathiM Member Posts: 8,028 Member
    #11
    Mary, Stage II here. But many of us start the same way. Scared to death. I agree with all here. And isn't it great to have such a group of experts that have actually "been" there! What a great daughter you are! My daughter dropped everything and supported my rough travel thru surgery, chemo, rad. What a blessing you guys are!!!!
    A note for your mom...let go, stop trying to help everyone else, they will wait for you. I learned that it doesn't make you less of a strong person to ask for and accept help. It NEEDS TO BE ALL HER for her now. Not selfish, just self saving!
    All my love and prayers.
    Kathi
  • jana11
    jana11 Member Posts: 705
    #12
    Mary, welcome... sorry you had to come, but we are so happy you found us. Your mom is very lucky to have you there for her.... never forget that. One of the hardest adjustments I had to make, was accepting help; admitting that I needed help at times. Give your mom time for that. Just be there.

    I am a stage 4 survivor with a colostomy. I picture the bag as my option for life. It gets MUCH easier with time. It took me several months to get the hang of it. Now - no biggie. And my friends can't even tell! When I am on chemo I get diarrhea - different story, but otherwise I can wear fitted clothing without problems.

    What you need to do, is remember to take deep breaths and simply appreciate time together and life in general.

    As my onc once told me, "cure is always an option. We just have to deal with what we have right now." Even if only 1 in 100 can live - your mom is that 1. NEVER loose hope. If your mom feels better worrying about others, let her worry. Make sure both she and you take care of yourselves and try to identify limits.

    We are ALWAYS here for you. Come anytime you have questions.

    FYI: my husband has a much harder time with my disease than I do. I appreciate him soooo much, but I know he feels helpless. Tell your mom how much you care on a daily basis... help her enjoy every single moment..... that is how I battle my monster. I am doing great!!! :)

    You and your family will join my list of prayers. Take care, jana

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