In the dark

pinsandneedles
pinsandneedles Member Posts: 8
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
My husband is half way through his treatments. He was diagnosed with stage 3 tonsillar lymphoma. He's been set to have 8 months worth of intense chemo, no radiation. He had a PET scan (results to come on the 19th). He refuses to tell anyone of his status, and won't let anyone go to or call his doctor. He did say if the the chemo isn't working, he will have to be in the hospital for 40 days. What might this be for? This is his 3rd relapse. He's had 3 blood transfusions. Cancer was found in his tonsils, adenoids, lymphnodes, stomach. He only had his tonsils and adenoid removed. We have kids... I need to know something! Can anyone shed some light? Please.

Comments

  • luvwindycity
    luvwindycity Member Posts: 3
    #2
    I feel for you and your husband
    I too didn't let anyone "in" on my stage, treatments, etc, including myself. I have envelopes filled with my results and never, ever have even come close to wanting to know. Reason being, it just doesn't matter. I don't want to know. I'm going to be where I have to be, do what I have to do, at whatever time I'm told. Knowing the particulars doesn't change the diagnosis. The only test i've ever seen the results of are the "before" tumors. My doctor urged me to see the results of that one. I had over 30 tumors in my body and my last scan was clear. I have another one in July, and hopefully that one will be clear too. I never thought I would be so uninformed about something so important that directly affects my life, but it was the best way for me. My husband, daughter, and other family know my diagnosis and that's about it. It works for me. Sometimes they try to coerce me into getting more info but I don't want to. I'm going to do whatever my doctor tells me to anyway. Knowing more doesn't work for me. Maybe that's the same way your husband feels also.
  • pinsandneedles
    pinsandneedles Member Posts: 8
    #3
    luvwindycity said:

    I feel for you and your husband
    I too didn't let anyone "in" on my stage, treatments, etc, including myself. I have envelopes filled with my results and never, ever have even come close to wanting to know. Reason being, it just doesn't matter. I don't want to know. I'm going to be where I have to be, do what I have to do, at whatever time I'm told. Knowing the particulars doesn't change the diagnosis. The only test i've ever seen the results of are the "before" tumors. My doctor urged me to see the results of that one. I had over 30 tumors in my body and my last scan was clear. I have another one in July, and hopefully that one will be clear too. I never thought I would be so uninformed about something so important that directly affects my life, but it was the best way for me. My husband, daughter, and other family know my diagnosis and that's about it. It works for me. Sometimes they try to coerce me into getting more info but I don't want to. I'm going to do whatever my doctor tells me to anyway. Knowing more doesn't work for me. Maybe that's the same way your husband feels also.

    thank you!
    Thank you so much for shedding some light on this. He got word last week, that all his tumors are gone. Apparently he had more than he led on. He still has to finish chemo and a very possible bone marrow transplant. I so appreciate you taking the time to help me better understand his unwillingness to share. So glad you're better!!!
  • catwink22
    catwink22 Member Posts: 281
    #4
    pinsandneedles said:

    thank you!
    Thank you so much for shedding some light on this. He got word last week, that all his tumors are gone. Apparently he had more than he led on. He still has to finish chemo and a very possible bone marrow transplant. I so appreciate you taking the time to help me better understand his unwillingness to share. So glad you're better!!!

    Great News!
    Pinsandneedles I'm very happy to hear that his treatment has worked! I saw your original post, but didn't have the opportunity to reply. I was going to say that the hospital stay was probably for a bone marrow transplant and that I am very cautious what I tell my family for a few reasons. One is that I can handle my situation, but some people in my family get emotional or over-concerned. That is harder for me to bear than the medical news and procedures. When they get upset, I get upset. I tell them things on a need to know basis. Another reason is sometimes the barrage of questions is too much. It's not that I don't appreciate their concern and caring, it just gets overwhelming sometimes and I need space to sort my head. Everyone handles things differently. Some people need to talk and talk to deal and understand, others need a place to make their decisions and digest their feelings in a quiet way. If he doesn't tell you things I don't think he's shutting you out or sticking his head in the sand. From the sound of your second post I would say he is also telling you on a need to know basis. Blessings to you both and best of luck in his continued success! Cat

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