Overwhelmed

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Wifenmom
Wifenmom Member Posts: 2
in Head and Neck Cancer #1

My husband was diagnosed in November of stage 2 squamous cell carcinoma of the mouth.  After scans and 3 doctors weighing in it was decided that radiation only was needed and by the time prep was done radiation started first of the year.  I was so proud of my husband, he tolerated radiation much better than most and came through like a trooper.  Then a month after radiation,his pain in his mouth was increasing and had some unusual swelling in his neck, he had another pet scan only to show radiation didn't work.   Both the ent surgeon and radiation oncologist quickly decided that surgery was needed.  Surgery took place in May with a partial glossectomy and a right neck dissection and also a trach placed. Once again he was a trooper and after a month he was talking with the trach in. Healing was slow due to radiation. Oh, did I mention he also has a rare blood disorder that makes him clot all the time?   He'a been taking blood thinners for years.  Well feeling good, he decided to clean a little around the house.  All of a sudden he started bleeding out of his mouth and couldn't stop.   Thank god my teenage daughter was there and he got rushed to the emergency room.  After emergency surgery to stope the bleeding and a blood transfusion he was ok.  Now doing much better they decided to start chemo since the margins were just too close.  

And after all of this I am just so overwhelmed with everything.  His first dose was 3 days ago and all I could do is sit by his side.  It's so hard on him.   We have two daughters and a wonderful work family ... our family is across the country and I have never wanted them to be here more than now.  

To make matters worse his pain in his mouth is increasing again like it did after radiation.   The ent is keeping an eye on a spot in the mouth, but no biopsy yet.   I just thought I would reach out and find others going through or have been through this ordeal! 

Comments

  • NJMOM
    NJMOM Member Posts: 64
    #2
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    Support

    The one thing I've found since stumbling onto this site a few weeks ago is that in order to be who you need to be for your husband, we need someone to talk to as well. I feel guilty and selfish at times thinking about how hard this is emotionally on me and how I miss the hugs, long summer night talks we used to have etc.  Then I come here and I read success story after success story and I say it will all be worth it in the end and this is just a temporary bump in the road. I'm here if you need to vent..maybe we can help each other through this ordeal!

  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
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    Hi Wife

     

    Welcome to CSN H&N, first I want to say you are a wonderful and loving caregiver in what you are doing for your husband. I like your husband don’t know what I would have done without my caretaker Wife at my side everyday. What you are going through is hell right now that was the same for all of us when we first started not knowing what to expect. Right now you need to trust your doctors and go by what they are telling you, but like Kent is saying as soon as you both are able get a second opinion just to make sure he is getting the treatment he needs. If you are here in the US get in touch with one of the major cancer institutions and make an appointment or have your doctor refer you to one of them.

     

    I am a minister so for me I also believe in the power of prayer and will keep you both in my prayers if that is OK with you

     

     All the best for you both

    Tim

  • Wifenmom
    Wifenmom Member Posts: 2
    #4
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    NJMOM said:

    Support

    The one thing I've found since stumbling onto this site a few weeks ago is that in order to be who you need to be for your husband, we need someone to talk to as well. I feel guilty and selfish at times thinking about how hard this is emotionally on me and how I miss the hugs, long summer night talks we used to have etc.  Then I come here and I read success story after success story and I say it will all be worth it in the end and this is just a temporary bump in the road. I'm here if you need to vent..maybe we can help each other through this ordeal!

    Talking does the heart and stress good

    i agree venting is good but also being there for each other! Thank you 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
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    dear wife, i'm so very sorry

    dear wife, i'm so very sorry your hubby and family are going though so much.  it is absolutely overwhelming.  i am praying for all to work this time and for your hubby to finally be cancer free.  God bless you all.

    dj

  • wmc
    wmc Member Posts: 1,804
    #6
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    Welcome to the H&N Group

    Welcome to the group, and also sorry you need to be here. I do hope they have it figured out right this time. I agree in that I hope you did go to a major center like a University hospital or one that does this all the time.

    Will keep you both in my thoughts and prayers. The Head & Neck cancer treatment is the second worse one to go through, but has very good survival rates. 

    Bill

  • littlemisskitty
    littlemisskitty Member Posts: 35
    #7
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    Thinking of you

    I too came here because of cancer coming back. I wish I had come on here during the first two surgeries she had but at least I'm here now. Welcome to the family.

    The cancer was in my mom's mouth as well. Unlike your doctor, they decided surgery was the best way to go. They didn't want to radiate the mouth so instead they removed the 5 cm tumor growing in the gum up to her sinuses. She has had three surgeries (two in her mouth, and one on each side of her neck to remove lymph nodes) and is now in the middle (by middle I mean one week done out of another 6 more) of radiation and chemo. She doesn't have the blood disorder your husband has, but had been through the waiting game with biospys and dealing with cancer coming back. Surgery is very successful in removing cancer. Last October, my mom had her upper jaw removed as well as part of her palette. They were able to reconstruct her palette although she says it feels higher in her mouth, and they made a prothesis for her and when she wears it although a few quirks in her facial features, she appears to have a normal set of teeth and a normal mouth.

    My mom recently had the cancer return on the left side but this time in the lypmh nodes. They think it leached from her prior surgery site. They removed the lymph nodes and the tumor and are radiating it to make sure it doesn't spread anywhere else. During the last surgery to remove her right side lymph nodes, they also did a few biospys in various parts of the mouth. The results all came back negative for more cancer in the mouth so surgery does do its job. It's the spreading you have to worry about. He will get through this and what seems overwhelming will be something you guys look back on as tough but that you made it through it. Just stand by his side reminding him he will make it through it. I think those statements help my mom the best as well as reminding her of what she has to live for. Reminding her of future plans we have and how she will get to do them (in her case it's moving to be closer to her grandchildren). Think positive. That is one thing this forum has taught me and I'm sure it will help you get through this too. 

  • NJMOM
    NJMOM Member Posts: 64
    #8
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    Wifenmom said:

    Talking does the heart and stress good

    i agree venting is good but also being there for each other! Thank you 

    I am here

    I am here if you need to talk. I can send you a private message with my email info if you want. I don't feel so alone since coming to this site. My family only lives an hour away and have been extremely supportive and concerned but unless you've actually had cancer touch your life personally, they really have no idea what you're going through. My husband says he believes that this is harder on me than it is on him and I think he's right to a degree. So busy trying to keep it together and being strong for everybody else that sometimes I forget I matter too! Praying for you and your husband!

  • hwt
    hwt Member Posts: 2,328 Member
    #9
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    littlemisskitty said:

    Thinking of you

    I too came here because of cancer coming back. I wish I had come on here during the first two surgeries she had but at least I'm here now. Welcome to the family.

    The cancer was in my mom's mouth as well. Unlike your doctor, they decided surgery was the best way to go. They didn't want to radiate the mouth so instead they removed the 5 cm tumor growing in the gum up to her sinuses. She has had three surgeries (two in her mouth, and one on each side of her neck to remove lymph nodes) and is now in the middle (by middle I mean one week done out of another 6 more) of radiation and chemo. She doesn't have the blood disorder your husband has, but had been through the waiting game with biospys and dealing with cancer coming back. Surgery is very successful in removing cancer. Last October, my mom had her upper jaw removed as well as part of her palette. They were able to reconstruct her palette although she says it feels higher in her mouth, and they made a prothesis for her and when she wears it although a few quirks in her facial features, she appears to have a normal set of teeth and a normal mouth.

    My mom recently had the cancer return on the left side but this time in the lypmh nodes. They think it leached from her prior surgery site. They removed the lymph nodes and the tumor and are radiating it to make sure it doesn't spread anywhere else. During the last surgery to remove her right side lymph nodes, they also did a few biospys in various parts of the mouth. The results all came back negative for more cancer in the mouth so surgery does do its job. It's the spreading you have to worry about. He will get through this and what seems overwhelming will be something you guys look back on as tough but that you made it through it. Just stand by his side reminding him he will make it through it. I think those statements help my mom the best as well as reminding her of what she has to live for. Reminding her of future plans we have and how she will get to do them (in her case it's moving to be closer to her grandchildren). Think positive. That is one thing this forum has taught me and I'm sure it will help you get through this too. 

    Stay strong

    You and your husband have had a tough go of it. As a caretaker be sure to take some "me time" and don't feel guilty about it. That little bit of time for yourself will allow you to be stonger for him. Try not to worry about the unknowns. I always say "take it as it comes and deal with it". 

    You and your husband will be in my prayers.

    Candi

  • MrsBD
    MrsBD Member Posts: 615 Member
    #10
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    Overwhelmed

    Don't ever feel embarrassed about being overwhelmed. Having cancer is overwhelming, much more so when things don't go according to plan. Please know that you can come here for suggestions, support, and prayers anytime.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #11
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    first aid

    Wifenmom,

    Have you tried Magic Mouth Wash for relief of mouth, tongue & throat discomfort?

    Matt

  • littlemisskitty
    littlemisskitty Member Posts: 35
    #12
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    CivilMatt said:

    first aid

    Wifenmom,

    Have you tried Magic Mouth Wash for relief of mouth, tongue & throat discomfort?

    Matt

    Magic Mouth Wash

    Not to highjack the thread or anything but is Magic Mouthwash over the counter or something prescribed? We are trying to get it for my mom to help ease discomfort and didn't know to go back to her doctors and ask for it. We tried looking at CVS but either didn't know what we were looking for or where, or it wasn't there.

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #13
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    littlemisskitty said:

    Magic Mouth Wash

    Not to highjack the thread or anything but is Magic Mouthwash over the counter or something prescribed? We are trying to get it for my mom to help ease discomfort and didn't know to go back to her doctors and ask for it. We tried looking at CVS but either didn't know what we were looking for or where, or it wasn't there.

    Magic Mouth Wash

    Magic Mouthwash needs a prescription from the doctor and it is well worth it.  My husband used it and it helped him.  

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #14
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