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  • Posted by Rhea on February 24, 2010 at 5:21 am

    My hubby is 45 I am 37 we have a 4 year old son. My hubby has mestastic BC in the lungs and LN. He has been under chemo for the past 2 years and there has been no decrease of tumors. I know I was told there was no cure but I guess I am hoping for a miracle, as I guess all of you are. I dont know what is my question, but I am having such a hard time dealing with all of this. Having to take care of my child, home and my hubby. I have to push him to speak up to the doctors and make sure he is doing all he should. I guess its extra hard bec I am IT, his parents are old and live in another country, he has 2 brothers with kids here but they are busy with their own lives. I am an only child and my mom works full time and lives an hour away. Do most people have more support around them? I guess I try to focus on my son and take him places on the weekends to have fun. sorry so long, thanks for listening, Rhea

    sara.anne replied 13 years, 11 months ago 4 Members · 8 Replies
  • 8 Replies
  • sara.anne's avatar

    sara.anne

    Member
    March 23, 2011 at 2:46 pm

    Rhea, this has been so hard on all of you. Wish there were something I could do, but all that is possible is to wish you
    comfort and support.

    Sara Anne


    Diagnosis 2-08 Small papillary TCC; CIS
    BCG; BCG maintenance
    Vice-President, American Bladder Cancer Society
    Forum Moderator
  • rhea's avatar

    rhea

    Member
    March 23, 2011 at 3:44 am

    Gosh, I have just read my post from a year ago and my life sounds so terrible. It’s a year later and I still have similar issues. Unfortunately, we are on the 10th chemo, brain mets, brain radiation. This past chemo has been really harsh. My husband is in bed for 4 days before he has any energy to get up and he would only drink banana milk shakes.
    I still am taking it one day at a time and try to do whatever I can. The doctor said that this may be the last chemo she would give him and then suggested “supportive care”. I had to finally corner her and ask how much time do we have and she said 6mths to a year.
    We have been dealing with this for almost 4 years. I never thought I would say this but thank G-d my MIL is coming to stay with us next week :blink:
    Rhea

  • stephany's avatar

    stephany

    Member
    March 5, 2010 at 4:27 am

    Just remember that we are here, if you want to talk, or want to hear how we handled something ourselves, or just to complain about the things we all complain about!

    Stephany

  • rhea's avatar

    rhea

    Member
    March 5, 2010 at 2:10 am

    Thank you Stephany, I dont think my hubby is at the hospice stage. The doctor has not had any discussions about time. His cancer has seemed to grow at a slow steady pace. I know that can change at any time. The doctor just seems to feel that chemotherapy is the only method right now.

    I feel like the tazmanian devil the way he whirls around. The 2 things that keep me going is that I know I have to work and take care of my son. I try to take care of my hubby as much as I can. And of course taking care of myself comes last. I know, I know you cant take care of others unless you take care of yourself. :)
    I am trying to take things one day at a time. I feel that I will handle things as they come up. As with anything there are good days and bad days.
    Thank you for your support, Rhea

  • stephany's avatar

    stephany

    Member
    February 24, 2010 at 11:58 pm

    I don’t know a lot about the effects of only Gemzar, but I know the Alimta was very hard on my husband. After he had that treatment, he pretty much gave up, and had nothing but low white counts, etc. I still think that the chemo was what did the most damage, instead of the cancer, but that is not all bad, because his last days were fairly peaceful, for him, and for his family.

    Have you contacted hospice? You will find that there are a lot of discussions about hospice on this site, and I fought and fought with myself about whether or not to call in hospice, but when I did, I wondered about why I had waited. They were wonderful, and made his time easier. They have a lot of help, both for patients AND families. I still hold dear one of the printed works that they gave me when he entered hospice care.

    It is wonderful that your son can participate in his illness and journey. He will remember these days with love. Are you taking lots of pictures for him?

    And there is an upside to your having the responsibility for all the family details that you will cherish in your future. I, too, was the caretaker of the family finances, etc., and when I saw the problems that other widows faced during the illness and aftermath, I could at least be happy with my facility in the finances.

    Are you able to talk with him about “what to do if…?” And does your doctor speak clearly about prognosis and end of life matters in place?

    Forgive me if these questions cause you discomfort. I speak only from my heart after going through this journey with the help of others on this site.

    Stephany in Iowa

  • rhea's avatar

    rhea

    Member
    February 24, 2010 at 10:32 pm

    Thank you George and Stephany for your responses. George- I have tried to explain to hubby how I am feeling but I guess he may feel there is nothing he can do. In our time together, I have been the one who handles most everything, so maybe it’s expected. Also I am afraid to make him feel bad or to find out how much “pain” I am in. He is not very verbal to me and he never seems to understand why I need some time to myself.

    Stephany- I am sorry for your loss. Hubby is under the 5th chemotherapy of Gemzar and he seemed to be ok this week. His last chemo- Alimta was really harsh on him extreme fatigue and nausea. It has only been a week on Gemzar so I dont know if the symptoms will get worse. He pretty much cant walk around much like at the mall, he gets tired. He thankfully has a wonderful relationship with my son and they spend a lot of time together. I worry about that too, if later on it goes downhill.

    My son is pretty good, he knows daddy is sick and is somewhat understanding. He does act up a bit, he is very active and full of energy, so I take him out if hubby needs to rest and he is in school most of the day.
    The doctor is ok, she is not very warm and when I ask questions they are short answered.
    I did find cancer care.org and went to a social worker but it is hard to make weekly appointments.
    Thank you again for listening. I feel better today! I have to keep up my strength.
    Rhea

  • stephany's avatar

    stephany

    Member
    February 24, 2010 at 3:55 pm

    Rhea, I was just on my Facebook page when I received news of your post. Cynthia suggested I log on and see if I can be of help. The first post you received was a very good one, and one that we caregivers do not hear loudly enough. You must take care of yourself, and your son, and, believe it or not, it will help your husband’s state of mind,

    Men do tend to go into their “nothing box” when they are hurting or scared or depressed, and the more we try to drag them out, the more they resist. If you can find the strength to show him that you will be OK with whatever happens, it may give him what he is neeeding right now, peace of mind to be able to cope with what is happening to him.

    Tell us a little more….how is his doctor treating him, what kind of state is his health now, and how are YOU? Do you have any cancer support? How is your son doing? Is your husband able to interact with him? That meant SO much to our son.

    Have you found any resources that will give you more information? Have you looked around this site?

    A little about me….my husband died two years ago from metastasized bladder cancer, after fighting for over a year. He went through an RC, blocked ureters, nephrostomies, etc, etc.

    Please, keep writing, and we’ll do what we can to answer your questions.

    Stephany in Iowa

  • gkline's avatar

    gkline

    Member
    February 24, 2010 at 3:24 pm

    Rhea
    I thought I might be of help to you. I am looking at this from the patient’s viewpoint to the caregiver.
    We DO NOT want you to give every waking thought to us. We know you are hurting and, your pain is usually much more painful than ours. I remember wanting soooo badly to get better so I could ease my wife’s pain! I wanted her to have a happy life. I spent time planning small excursions for her to go on with her friends.

    Even though your husband may not do this…. He doesn’t want you to continue to be hurting. Talk to Him. He will tell you that you must find some Joy in your life. Lean on your friends a little more; real friends will quickly come to your side. I am not really a religious person, but I was visited by almost every denomination of minister when I was sick. They did NOT try to convert me. They just talked. They know how to ease your pain. Don’t be afraid of them. this is what they do. GO TO THEM. They will welcome you.

    I am sorry you had to wait almost a day for a response. But your plea is heartwrenching for almost all of us. We feel so helpless to help you in your time of great need.

    May GOD bless

    George


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

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