Update on Scott

Btrcup Member Posts: 286
edited March 2014 in Colorectal Cancer #1
Hi all, it's been a while since I've posted. Things have been hectic with the kids going back to school.

Well Scott had a meltdown last night. I felt so helpless! He has another fistula and this one is leaking bad. The wound nurse gave him ostomy bags to collect the fluids, but they break easily. He is just getting more and more upset about things. He asked me how many bags he had left and said he was hoping the bag he had on did not break...then he just started crying. All I could do was hold him. He is getting so frustrated with all the problems (besides the cancer) that is happening to him. But the fistulas are the worst. The liquid that comes out of them is basically poop and it smells horrible. I have to walk out of the house because I start gagging and the kids speak their minds and say "Daddy you smell" and that upsets him too.

Every time something new happens, we both get so scared that "this is it." His feet have swollen again and he has a terrible pain in his groin area and he has had a slight fever on and off all week. His oncologist told him to take ibuprofen and put heat on it and if the pain persists, call him back. You would think when new things develop the docs would want to see him right away.

I wish I could make everything go away, but I can't. I watch him sleep at night and his breathing looks so labored and it's scaring me the sh** out of me. He said he has these terrible dream at night and he wakes up with his heart racing. As I watched him last night, I could tell he was dreaming and he started to twitch really bad. I wanted to wake him up, but he hasn't been sleeping well and I want him to rest.

Monday he has chemo. His onc has been admitting him to the hospital after his treatments because he's afraid his body won't tolerate it as well as the last time. He was down to 118lbs. When he weighed in the other day, he was 124lbs. I think this may be fluid retention. Who knows....we don't know what to think anymore.

Well I've rambled enough. I'm glad I can come here and relate my fears. I'll try to keep everyone posted. Prayers to all.



  • goldfinch
    goldfinch Member Posts: 735
    I am so sorry for what you, Scott and the kids are going through. One of the most frustrating things about this disease, for me, is how ill the treatments make us feel. It is just not fair that you have to suffer all these set backs. I'm praying for hope and strength for both you and Scott.
  • bsrules
    bsrules Member Posts: 296

    My thoughts and prayers are with all of you!!!! As everyone always kept telling me to come and vent anytime!!! I know to well what you are going through. You are doing everything right!!! Yes, Scott is going through the toughest fight that he every has and so are you!!! Some people don't realize that it is just a hard for you and even sometime harder as all you want to do is take care of you husband and take everything away and make everything right again. I is very hard watching Scott go through this know that all you can do is be there and hold him. Please know that I am thinking of you guys often!!!!

    I know that I haven't been around lately but that doesn't mean that you are not important to me. A day doesn't go by that I don't think of you guys. Time hasn't made anything easier for me as the reason I haven't posted as I think you guys are tired of hearing the same thing all the time.

    I just check the posts and saw your and wanted to let you know it is ok to feel as you do!!!! I hate the idea of this MONSTER hurting anyone else as it did Bob.

    Best Wishes and Prayers heading your way!!!!

  • rthornton
    rthornton Member Posts: 346 Member
    I don't even know what to say, your situation sounds so difficult. Just know that we are all pulling for you and Scott, and we wish you the absolute best. This must be amazingly difficult for you. We're all here for you.

  • CAMaura
    CAMaura Member Posts: 719 Member
    Hi Linda -
    As ever, I am so sorry to hear that Scott is so sick. I know it is hard on him as well as you and the family. Would you entertain the use of a home-health-care nurse? It could help all the way around: caring for Scott, taking pressure off of both of you, and even being a 'heads-up' if something happens which might warrant a call to the doc or a trip to the hospital. I can understand Scott having a meltdown.....he is tired, weak, and in no shape (mentally or physically) to be cleaning up after himself. My thought is that some professional help will allow him the dignity that he needs - as well as the care that is not pleasant for any of you to handle. My thoughts are with you; wishing you the best - Maura
  • alihamilton
    alihamilton Member Posts: 347 Member
    Oh Linda, I am so sorry to hear about all you and Scott are going through. I can imagine his despair and your own fears and helplessness. He is so lucky to have you by his side through all this.

    I agree with Maura...can you get some help? It is too much for you to deal with on your own, especially as you have young children to look after too.

    Thinking of you.

    Take care,

  • nanuk
    nanuk Member Posts: 1,358 Member
    Linda: You need help, both physically and emotionally..call your Dr or the hospital social worker, or someone who knows what resources are available to you and your family. You especially need respite in order to deal with this. Bud
  • themis01
    themis01 Member Posts: 167
    I am so sorry that things are so tough right now. I hope that you are able to find some help that can take a little bit of pressure off of you both.
    I think of you often.
  • jsabol
    jsabol Member Posts: 1,145 Member
    At times like these, I am sorry for the limitations of our virtual community. I wish I could come over to sit with Scott while you and the kids have a break. Bud is right; can you call in more help? I know you have a large network of friends who care; perhaps they need to be asked to help with specific things? I know that so many people often want to help, but just don't know what to do. I hope you have a friend/clergy/social worker/confidant who can get the word out.
    You and Scott and the kids are in my prayers. Judy
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  • 2bhealed
    2bhealed Member Posts: 2,064 Member

    (((((oh honey)))))

    I am going to echo nanuk: Please seek outside help with this.

    This is really more than one mom/wife can do.

    My heart goes out to you, Scott and your family. Just curious how his parents are doing with this yet. Still in denial???

    At these times one wonders how much more physical misery can one human take?? And then a new day begins and we are thankful for that day.

    I knew it was getting to the end with my sister only when she said for the first time, "I can't take this pain any longer." Then I knew. Two days later she started going catatonic, went into the hospital on a Sunday and died on a tuesday. Less than a week after she had made that statement to me for the first time. I think her spirit had given in and the fight was gone.

    One day I would pray that she go soon and be taken out of her horrendous pain (dying from intestinal cancer can be violent and extremely disturbing) and the next day I'd pray for her to please have one more day with her baby girl. It was a very trying time.

    Then after she died we had to deal with feeling relieved that she was gone and it was over. That allows guilt to creep in.

    Cancer can really suck.

    Ok, so everyone, I'll say it again.....throw away the pop, the sugary cakes, the potato chips, the fast food, and feed your body with wholesome real live foods that heal.

    When you go to the chemo clinics and they want to serve you donuts and coffee or pop (or Ensure) look appalled and tell them you prefer to NOT feed your cancer thank you very much!!
    Tell them that if you were dealing with lung cancer you SURELY would NOT be handing out cigarettes to their chemo patients now would they????

    sorry. I just get so fired up at INTESTINAL CANCER @*#&^$%!!!!!

    peace, emily who will not rest until doctors quit feeding the cancer they purport to be trying to get rid of. HA! (sorry to go off on your thread linda! Scott's suffering pains me more than you know).
  • Kanort
    Kanort Member Posts: 1,272 Member
    Dear Linda,

    Thanks for coming here and sharing your difficult times with us. This appears to be bigger than the two of you and additional resources are certainly appropriate at this time. Please know that we are praying for Scott and for you.


  • kangatoo
    kangatoo Member Posts: 2,105 Member
    Kanort said:

    Dear Linda,

    Thanks for coming here and sharing your difficult times with us. This appears to be bigger than the two of you and additional resources are certainly appropriate at this time. Please know that we are praying for Scott and for you.



    Hi Linda. I agree with everyone here. We all know from your posts how difficult things are for you. That is why we care so much.Asking for help Linda is not an admission to not being able to cope. No matter how much love we feel for our loved ones who are suffering we all need to be able to seek some help from outside assistance. Maybe you have already sought that help....maybe not. Either way Linda you project that there is more that can be done to help you here. Don't feel that you are failing and cannot cope. I am sure that your courage and strength has limits sweetie. Look for help anywhere you can get it!
    Love always, Ross and Jen