stage four small cell squermous cell cancer

Tinalipford
Tinalipford Member Posts: 2
edited March 2014 in Head and Neck Cancer #1
My name is Tina.My husband was given the news on his 38th birthday that he had squermous cell head and neck cancer, stage four .They treated him with cisplatin chemo every friday for six weeks and with 30min of radiation every day for six weeks.He was put in the hospital several times during treatment and ended up with a pic line and a feeding tube, I was not sure he would make it through the treatments.He lost a hundred and twenty pounds and became addicted to the narcotics. That was two years ago. About eight months ago he began complaining about pain behind his eye but would not go to the Dr.until the pain became unbearable.We got the news on my daughters ninth birthday that the cancer is active and in several areas of his head,including his skull base and the center part of his brain, his left jaw,his left eye, his entire sinus and some marrow infiltration was detected. My husband refuses to go through treatments again. He has put his trust in God and says that he will either live with the cancer or he would die with the cancer but it was all in Gods hands. I don't know what to do... We have a nine year old daughter and very little life insurance. I don't know what will happen. will he have a seizure or a stroke? will he live a few years or a few months? What do I need to look for? I try so hard to stay positive. We never talk about his cancer.He won't discuss it with anyone including me. His mother and father have no idea and he will not let me tell them.So, I have this terrible news that I can't talk to anyone about. He gets up every morning and goes to work. He acts like it is not real...Can someone please give me some tips on what I should be expecting, what I should be looking for?

Comments

  • DJG1
    DJG1 Member Posts: 121
    #2
    I am so sorry to hear about
    I am so sorry to hear about your husband. I dont have the answers for you, but I can say a prayer for you. I can understand how your husband feels, and I also feel for you as the care taker that has no one to talk to. It is not the answers, but this is a place that you can come and talk to and vent with people. Please do this when you need to, for your own sanity. Please keep us posted on you and your husband prognosis. May god bless both of you.
  • Pam M
    Pam M Member Posts: 2,196
    #3
    DJG1 said:

    I am so sorry to hear about
    I am so sorry to hear about your husband. I dont have the answers for you, but I can say a prayer for you. I can understand how your husband feels, and I also feel for you as the care taker that has no one to talk to. It is not the answers, but this is a place that you can come and talk to and vent with people. Please do this when you need to, for your own sanity. Please keep us posted on you and your husband prognosis. May god bless both of you.

    Echoing DJG1'a Sentiments
    Very sorry to hear of your troubles. I can't be of any practical help to you; I have no knowledge that would be useful. Sorry, too you have the added burden of not being able to talk with your hubby or family about what's going on. That has to be a nightmare. Hang in there.
  • micktissue
    micktissue Member Posts: 430
    #4
    Tina
    Hi Tina and I'm very sorry to hear about your husband's illness and his isolation.

    I'd suggest that you talk to him about how this makes *you* feel, just what you wrote here, about your fear of losing him, what it will mean to his daughter. I also suggest couple's counseling to help you both through this difficult time.

    My guess is he's really scared and this is how he deals. At the end of the day you can only control your own behavior and love him in spite of his withdrawal. Or get mad and let him know that his withdrawal is hurtful. Or empathize with is fear and pain of the real potential he will lose his life, you, his daughter, everything that is important to him.

    On my worst days I tend to withdraw and my wife and kids really feel it. They are scared of losing me but sometimes it's too much for me to handle all by myself. They depend so much on me that if I die, what will be come of them? Your husband might be in a similar place, feeling squeezed by conflicting emotions. It's hard to say without knowing more and talking it through.

    Talking it through with a pro would help even if it's just you who goes to therapy.

    Keep us posted.

    Best,

    Mick
  • Hal61
    Hal61 Member Posts: 655
    #5
    Hopes are with you
    Tina, I'm so sorry to hear of your husband's diagnosis. From what you've described, it sounds like your husband has accepted his situation, but is perhaps unable as yet to talk to you about the totality of your family's situation. Give him a little time.
    My psychologist recently shared with me a truth that Mick mentioned in his post. I was reminded that most of life is out of our control. As my psychologist put it, we can only hope to control what we put in our bodies and how we interract with people. Thank you for sharing your news, with us. I hope sharing it here can help give you some peace.

    best, Hal
  • DLS5419
    DLS5419 Member Posts: 34
    #6
    Hal61 said:

    Hopes are with you
    Tina, I'm so sorry to hear of your husband's diagnosis. From what you've described, it sounds like your husband has accepted his situation, but is perhaps unable as yet to talk to you about the totality of your family's situation. Give him a little time.
    My psychologist recently shared with me a truth that Mick mentioned in his post. I was reminded that most of life is out of our control. As my psychologist put it, we can only hope to control what we put in our bodies and how we interract with people. Thank you for sharing your news, with us. I hope sharing it here can help give you some peace.

    best, Hal

    Tina,
    I am so sorry to hear this kind of news. As a daughter of a stage 4 tonsil cancer survivor of 6 years who is getting biopsy results Tuesday that could be similar, I can only imagine what you are going through. I know if my mom is told she has "it" back, she is not strong enough, nor is she willing to endure the treatment. Cancer is horrible, but I have seen how horrible the treatment is on a patient. Quality of life can become so low. Sometimes the treatment only extends the time by a few months but leaves the person a shell. I have seen patients beg their family to accept their decision so he/she may pass with "dignity"...something we can understand but cannot convince our hearts to accept. The issue is in the "not" telling family. Family can support! Family can pray! Family makes the time he has left. It makes no since to us. I guess it is a coping mechanism, but it will HAVE to be addressed. He may be angry with you, but there comes a time when you have to let the family in on what is really going on. No matter what, they will find out. If he is not going to do treatment the he needs to spend the time he would've done treatment cherishing every moment he has left; every sunset with you in his arms, every laugh and school project with his daughter, and every basic enjoyment that we so take for granted. I do not know if you are a believer in God, but in situations like these, God shows His love through the support and love of others. As a caregiver, my heart breaks for you. It is a rarity for someone to understand the pain , frustration, and sadness that comes with "holding" a loved one who wishes to remain in solitude. If you are anything like me, you probably begged him to see a doctor about this eye pain for months as you watched him stubbornly live with it. I think some patients become more afraid of doctors and are filled with anxiety with every visit. There have been moments when my mother was literally turning blue from not breathing, but she tried to explain it as "vocal chord strain" so she would not have to go to the doctor until she almost passed out. With your husband, he is probably doing this denial thing so he is not a burden to his family...which ends up just being a burden for you to carry all by yourself. He just can't think clear and has turned his body into auto-mode with emotions on lock down. I know you are scared. It is so hard to confront someone who is in such emotional shock. If you are afraid of his reaction, you might need to write him a letter or email. Explain the situation from your eyes in the sweetest-understanding-simple way you can, and then explain how unfair it is for your daughter and in-laws to find out he is sick when it is too late to share semi-healthy moments with him. Support is not a burden, nor is it a weakness. Support should just be called: love. Every second you have with the love of your life counts, and him spending it "distant" from you is hurting you worse than living in this moment and dealing with it. Your husband is in my prayers, and so is your daughter. Also, I want you to know you are in my prayers tonight. You are not alone. Do not be discouraged. <3

    God bless,
    Dani
  • Pam M
    Pam M Member Posts: 2,196
    #7
    DLS5419 said:

    Tina,
    I am so sorry to hear this kind of news. As a daughter of a stage 4 tonsil cancer survivor of 6 years who is getting biopsy results Tuesday that could be similar, I can only imagine what you are going through. I know if my mom is told she has "it" back, she is not strong enough, nor is she willing to endure the treatment. Cancer is horrible, but I have seen how horrible the treatment is on a patient. Quality of life can become so low. Sometimes the treatment only extends the time by a few months but leaves the person a shell. I have seen patients beg their family to accept their decision so he/she may pass with "dignity"...something we can understand but cannot convince our hearts to accept. The issue is in the "not" telling family. Family can support! Family can pray! Family makes the time he has left. It makes no since to us. I guess it is a coping mechanism, but it will HAVE to be addressed. He may be angry with you, but there comes a time when you have to let the family in on what is really going on. No matter what, they will find out. If he is not going to do treatment the he needs to spend the time he would've done treatment cherishing every moment he has left; every sunset with you in his arms, every laugh and school project with his daughter, and every basic enjoyment that we so take for granted. I do not know if you are a believer in God, but in situations like these, God shows His love through the support and love of others. As a caregiver, my heart breaks for you. It is a rarity for someone to understand the pain , frustration, and sadness that comes with "holding" a loved one who wishes to remain in solitude. If you are anything like me, you probably begged him to see a doctor about this eye pain for months as you watched him stubbornly live with it. I think some patients become more afraid of doctors and are filled with anxiety with every visit. There have been moments when my mother was literally turning blue from not breathing, but she tried to explain it as "vocal chord strain" so she would not have to go to the doctor until she almost passed out. With your husband, he is probably doing this denial thing so he is not a burden to his family...which ends up just being a burden for you to carry all by yourself. He just can't think clear and has turned his body into auto-mode with emotions on lock down. I know you are scared. It is so hard to confront someone who is in such emotional shock. If you are afraid of his reaction, you might need to write him a letter or email. Explain the situation from your eyes in the sweetest-understanding-simple way you can, and then explain how unfair it is for your daughter and in-laws to find out he is sick when it is too late to share semi-healthy moments with him. Support is not a burden, nor is it a weakness. Support should just be called: love. Every second you have with the love of your life counts, and him spending it "distant" from you is hurting you worse than living in this moment and dealing with it. Your husband is in my prayers, and so is your daughter. Also, I want you to know you are in my prayers tonight. You are not alone. Do not be discouraged. <3

    God bless,
    Dani</p>

    Hello, Dani
    Hope the docs tell you Tuesday that you're not following your Mom down the cancer road, and the biopsy is negative. Please keep us updated. Blessings on you - it must've been incredibly hard at times to take care of your mom. Be well.
  • JUDYV5
    JUDYV5 Member Posts: 392
    #8
    Planner
    Tina,

    A very very long time my Mom made the same decision. 29 years later it still hurts, but it was her choice. This web site is great for emotional support. I am going to give the practical advice. Did you know that an employer can terminate if to much time is missed from work. If he has life insurance through work that would disappear if he is terminated.
    If you live in the US, he needs to apply for Social Security Disability. If it is his time, your daughter will get survivor benefits until she is 18. Some people have difficulty getting approved. I got approved in 5 weeks. (I sent in a copy of my pathology report).

    You will be in my prayers.

    Judy
  • blonde1
    blonde1 Member Posts: 8
    #9
    Tina
    I am going through a really difficult time also.
    My husband is 63 and never ill one day in his life.
    November 2009 he was dianogised with Squamous Cell Carcinoma (SCC) of the tounge.
    Had surgery, removed 1/2 of his tounge.
    Rebulit his tounge, but he has never been able to eat since the surgery.
    Living on Enusre, he has been doing really good.
    Now, follow up Pet Scan after chemo and radiation showed a tumor on the opposite side of his neck.
    Surgery done last Tuesday. Hoped and prayed it would just be a isolated lymph gland, but it is not. So now we have a terrible prognosis and chemo again and still do not know what to expect or given much hope.
    The tumor had invaded the artery and this makes a whole new problem.
    I am in shock and so worried also as the Dr's said maybe 3 to 9 months if he is lucky.
    But..................I am not giving up and neither should you!
    We have no children and not only is he sick, his youngest brother is losing his battle with brain cancer.
    I know you feel you are alone and we cannot even imagine how our husbands feel.
    All I can tell you is keep trying, keep talking to people and keep looking for help for your husband.
    I cannot say too much about miracles right now as my faith is really weak, but I am a fighter and so is my husband and he too takes this like it is nothing, so let those that love you and your family be your strength and carry you both for now.
    I wish the best for you both as I do my husband.
    Please email me anytime you wish.
    We are in California.

    Thinking of you,
    Hope
  • Tinalipford
    Tinalipford Member Posts: 2
    #10
    blonde1 said:

    Tina
    I am going through a really difficult time also.
    My husband is 63 and never ill one day in his life.
    November 2009 he was dianogised with Squamous Cell Carcinoma (SCC) of the tounge.
    Had surgery, removed 1/2 of his tounge.
    Rebulit his tounge, but he has never been able to eat since the surgery.
    Living on Enusre, he has been doing really good.
    Now, follow up Pet Scan after chemo and radiation showed a tumor on the opposite side of his neck.
    Surgery done last Tuesday. Hoped and prayed it would just be a isolated lymph gland, but it is not. So now we have a terrible prognosis and chemo again and still do not know what to expect or given much hope.
    The tumor had invaded the artery and this makes a whole new problem.
    I am in shock and so worried also as the Dr's said maybe 3 to 9 months if he is lucky.
    But..................I am not giving up and neither should you!
    We have no children and not only is he sick, his youngest brother is losing his battle with brain cancer.
    I know you feel you are alone and we cannot even imagine how our husbands feel.
    All I can tell you is keep trying, keep talking to people and keep looking for help for your husband.
    I cannot say too much about miracles right now as my faith is really weak, but I am a fighter and so is my husband and he too takes this like it is nothing, so let those that love you and your family be your strength and carry you both for now.
    I wish the best for you both as I do my husband.
    Please email me anytime you wish.
    We are in California.

    Thinking of you,
    Hope

    Thank you all
    I just want to say thank you to everyone who responded to my post. Thank you for being there to listen and taking the time to reply to me. Thank you for you're prayers.
    Michael has had a pretty good couple of weeks.He has not been in too much pain.He has however been complaining about having a lot of pressure in his head and he can only open his mouth about half an inch. Just enough to get a toothbrush in there and brush his teeth.
    I can understand why Michael is not willing to go back to any of the Dr.'s. There is nothing that they can do anyway, his ENT Dr. told me last week that chemo and radiation are not even an option, the best they may be able to do is brain surgery and there is to much tumor to be able to remove it all. So at this point quality of life is what Michael is looking at.I think the hardest part of all of this right now is the not knowing what to expect.I mean will it be fast or drawn out.I do not want to see him suffer and I do not want our little girl to see that either.
    Michael is trusting in Gods healing. I want to do that to, and I really do try. It is just so hard to have faith in healing when all the signs point to the opposite.
    Micka (our daughter) she asks me every few days if her daddy is going to die. I tell her no and that everything is fine. I tell her that because she is only nine and I dont want her to be worried or sad before she has to be.She is afraid that we will go to God without her.I'm not sure if Im doing the right thing or not.Please keep us in your prayers and I keep praying for you everyday. Tina
  • Pam M
    Pam M Member Posts: 2,196
    #11
    Tinalipford said:

    Thank you all
    I just want to say thank you to everyone who responded to my post. Thank you for being there to listen and taking the time to reply to me. Thank you for you're prayers.
    Michael has had a pretty good couple of weeks.He has not been in too much pain.He has however been complaining about having a lot of pressure in his head and he can only open his mouth about half an inch. Just enough to get a toothbrush in there and brush his teeth.
    I can understand why Michael is not willing to go back to any of the Dr.'s. There is nothing that they can do anyway, his ENT Dr. told me last week that chemo and radiation are not even an option, the best they may be able to do is brain surgery and there is to much tumor to be able to remove it all. So at this point quality of life is what Michael is looking at.I think the hardest part of all of this right now is the not knowing what to expect.I mean will it be fast or drawn out.I do not want to see him suffer and I do not want our little girl to see that either.
    Michael is trusting in Gods healing. I want to do that to, and I really do try. It is just so hard to have faith in healing when all the signs point to the opposite.
    Micka (our daughter) she asks me every few days if her daddy is going to die. I tell her no and that everything is fine. I tell her that because she is only nine and I dont want her to be worried or sad before she has to be.She is afraid that we will go to God without her.I'm not sure if Im doing the right thing or not.Please keep us in your prayers and I keep praying for you everyday. Tina

    Word Sent Out
    Prayer and hopes sent out for you, Michael and Micka, Tina.

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