I want to do the right thing

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My Wife (55) just got diagnosed with aggressive invasive squamous cell carcinoma along with Perineural invasion. This is the same thing that took her mother after 3 years. She is terrified, distraught, angry. I want to help her in any way I can I just do not know what to say other than, "Yes this sucks, No its not fair, and, Of course, you are going to beat this, you are not your mother". What should I do to help her, what should I say or not say?

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  • rsp
    rsp Member Posts: 103 Member
    edited May 2017 #2
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    So sorry!

    Being a caregiver is so difficult.  I am the caregiver for my husband who has SCC on his tongue.  He is almost 15 weeks post radiation.  While my husband does not get on this site, I do.  I have found it filled with wonderful suggestions and lots of inspiration.  Maybe it would be good for your wife to join?  People are wonderful, and I find myself coming here almost every day.  I get on the Head and Neck Cancer section mostly.

    Just knowing there are others in the same boat as your wife might help her a bit (as well as the wealth of other information on here).

    Best of luck.  Sounds like you are doing everything you can.  Sometimes just being there to listen is all we can do.  

  • Concernedone
    Concernedone Member Posts: 5
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    rsp said:

    So sorry!

    Being a caregiver is so difficult.  I am the caregiver for my husband who has SCC on his tongue.  He is almost 15 weeks post radiation.  While my husband does not get on this site, I do.  I have found it filled with wonderful suggestions and lots of inspiration.  Maybe it would be good for your wife to join?  People are wonderful, and I find myself coming here almost every day.  I get on the Head and Neck Cancer section mostly.

    Just knowing there are others in the same boat as your wife might help her a bit (as well as the wealth of other information on here).

    Best of luck.  Sounds like you are doing everything you can.  Sometimes just being there to listen is all we can do.  

    Thank you so much for your

    Thank you so much for your post. Have you discovered what works for your husband? i.e. talking about it, not talking about it, listening, making plans to distract him... I am finding that it is easier to speak with her about the emotional stress than it is to discuss the disease and the treatment.  Any other ideas?

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited May 2017 #4
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    Things that work (or not)

    Sounds as though you're on the right path, looking to figure out what works as well as what doesn't. 

    Men tend to go for the details and doing stuff, women for the emotions and wanting to talk about it (And of course in saying that, we are all exceptions to at least some rules and/or patterns, YMMV and all that). 

    That you want to do what's helpful is great. Someone who'll listen, not try to "fix" things, follow up with a hug PRN is a wonderful gift. I'm not sure distractions are always helpful (the sink backing up, the dog getting into the chicken bones in the trash, the car not starting), but events and things that add beauty, love, joy, peace, kindness, patience, and goodness to life are a great way to be reminded that we ARE still living life even when it's not always under the best of circumstances.

    Keep us posted as you're able. 

  • rsp
    rsp Member Posts: 103 Member
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    Thank you so much for your

    Thank you so much for your post. Have you discovered what works for your husband? i.e. talking about it, not talking about it, listening, making plans to distract him... I am finding that it is easier to speak with her about the emotional stress than it is to discuss the disease and the treatment.  Any other ideas?

    Ideas?

    My husband never really wanted to talk about treatment.  So, I tried to respect that and only "added" to the conversation when he brought it up.  In the beginning of treatment, he liked to spend time alone in the recliner, so I let him go.  

    He had a few breakdowns, and like your wife, didn't seem to want to hear what I had to say, so I learned to sit next to him and silently listen.  It was very frustrating for me because I am a talker! 

    It frustrated me that he was not interested to get on this site (even after I read him several entries that were related to what he was going through).  So, I learned to do things that were helpful to me in this process.  Like I said, I get on just about every night.

    I have been pleading with my husband to get on an anti depressant, but he said he didn't need one.  Well, at the last dr. visit I mentioned it to the dr. and my husband was silent.  He didn't refuse, so I think we are making proress.  The dr. put him on 4 new medications, so we are going to revisit the antidepressant at the next visit.  Maybe you can bring this idea up to the dr. (You might have to do it without your wife there as she may get angry at you.)

    I have two grown daughters, and they seem to be able to get through to my husband better than I can.  So, if you have someone like that in your life (a friend, sibling, etc.) they might be helpful when it comes to talking to your wife.

    I don't know if any of this can be used with your wife, but please know there are other caregivers going through the same things.  This is a great place to vent.

    Have a good week.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
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    rsp said:

    Ideas?

    My husband never really wanted to talk about treatment.  So, I tried to respect that and only "added" to the conversation when he brought it up.  In the beginning of treatment, he liked to spend time alone in the recliner, so I let him go.  

    He had a few breakdowns, and like your wife, didn't seem to want to hear what I had to say, so I learned to sit next to him and silently listen.  It was very frustrating for me because I am a talker! 

    It frustrated me that he was not interested to get on this site (even after I read him several entries that were related to what he was going through).  So, I learned to do things that were helpful to me in this process.  Like I said, I get on just about every night.

    I have been pleading with my husband to get on an anti depressant, but he said he didn't need one.  Well, at the last dr. visit I mentioned it to the dr. and my husband was silent.  He didn't refuse, so I think we are making proress.  The dr. put him on 4 new medications, so we are going to revisit the antidepressant at the next visit.  Maybe you can bring this idea up to the dr. (You might have to do it without your wife there as she may get angry at you.)

    I have two grown daughters, and they seem to be able to get through to my husband better than I can.  So, if you have someone like that in your life (a friend, sibling, etc.) they might be helpful when it comes to talking to your wife.

    I don't know if any of this can be used with your wife, but please know there are other caregivers going through the same things.  This is a great place to vent.

    Have a good week.

    Getting through (or not)

    RSP,  you have some great points. 

    I was a caregiver for my mother, then my father, finally my spouse. Mother was angry, seeking control, worked with medical care team and HIPAA to limit my knowledge (Although, if her oncologist had been willing to tell her she needed to keep me in the loop, she probably would've); father was depressed / withdrawn, refusing treatment and food until he was put on hospice, at which point he perked up and rallied; spouse was depressed and not wanting to bother anyone.

    I didn't know about this site at the time. My mother would've been on it if she'd found it first. Father was terrified of computers (he refused to use the book search catalog at the library because he knew he'd somehow erase all the library's data bases with a wrong keystroke), besides he pretty much went with the theory of the less you know the better. Spouse was very up on computers but not so much on medical stuff, so might have used it.  I sure as heck would've been on this site! 

    BTW, my father spent a great deal of time sitting clutching a blanket over his head. Couldn't get him to let loose of it. One day I did what should've been obvious and asked, "Why the blanket?" His muffled reply, "It's a b*ll sh*t protector." "No kidding! You really need that?" "Oh, if you only knew." We did manage to convince him that the dog also served a similar purpose. There are days when each of us needs one. I know I do. This site is my current BS protector, along with naps, TV, reading, grocery shopping, and walking the dog being secondary ones. 

    Oh, and for getting through to them? With my mom, it was one of my cousins. With my dad, it was the dog, although her communication abilities were a tad lacking when it came to specifics. With my spouse, it was nurses and PAs. 

    Being there for our loved ones in ways that nurture both them and us is tough. All the best -- !

  • Concernedone
    Concernedone Member Posts: 5
    edited May 2017 #7
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    rsp said:

    Ideas?

    My husband never really wanted to talk about treatment.  So, I tried to respect that and only "added" to the conversation when he brought it up.  In the beginning of treatment, he liked to spend time alone in the recliner, so I let him go.  

    He had a few breakdowns, and like your wife, didn't seem to want to hear what I had to say, so I learned to sit next to him and silently listen.  It was very frustrating for me because I am a talker! 

    It frustrated me that he was not interested to get on this site (even after I read him several entries that were related to what he was going through).  So, I learned to do things that were helpful to me in this process.  Like I said, I get on just about every night.

    I have been pleading with my husband to get on an anti depressant, but he said he didn't need one.  Well, at the last dr. visit I mentioned it to the dr. and my husband was silent.  He didn't refuse, so I think we are making proress.  The dr. put him on 4 new medications, so we are going to revisit the antidepressant at the next visit.  Maybe you can bring this idea up to the dr. (You might have to do it without your wife there as she may get angry at you.)

    I have two grown daughters, and they seem to be able to get through to my husband better than I can.  So, if you have someone like that in your life (a friend, sibling, etc.) they might be helpful when it comes to talking to your wife.

    I don't know if any of this can be used with your wife, but please know there are other caregivers going through the same things.  This is a great place to vent.

    Have a good week.

    Ideas?

    Thank you so much for your thoughtful reply. I can imagine, relate, to how frustrating it is when you want to talk it through and your mate has no interest. Today I convinced my wife it was time to tell the kids. It was almost an argument but in the end we agreed and it was the right thing to do. I hate the subterfuge. I am not cut our for it. I am glad to say she is not currently a candidate for anit-depressants but she will be taking a valium tomorrow when she does per Cat and MRI scans.  Seems like we are either doing radiation or immunotherapy from here. Does anyone have experience with Keytruda from Merck? It is the drug the used on President Jimmy Carter. It looks promising but it is oh so early in development. 

     

    I applaud you for your patience with your husband. I think we all need a hyper dose of that. 

     

    Thanks to all of you for being such an amazing source of strength and insight. We are all stronger together. E Pluribus Unum. 

  • Concernedone
    Concernedone Member Posts: 5
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    JerzyGrrl said:

    Things that work (or not)

    Sounds as though you're on the right path, looking to figure out what works as well as what doesn't. 

    Men tend to go for the details and doing stuff, women for the emotions and wanting to talk about it (And of course in saying that, we are all exceptions to at least some rules and/or patterns, YMMV and all that). 

    That you want to do what's helpful is great. Someone who'll listen, not try to "fix" things, follow up with a hug PRN is a wonderful gift. I'm not sure distractions are always helpful (the sink backing up, the dog getting into the chicken bones in the trash, the car not starting), but events and things that add beauty, love, joy, peace, kindness, patience, and goodness to life are a great way to be reminded that we ARE still living life even when it's not always under the best of circumstances.

    Keep us posted as you're able. 

    JerzyGrll, Thank you so much

    JerzyGrll, Thank you so much for providing the feminine oerspective. I agree. Men want to fix, women want to chat. This defines my relationship fairly accurately. I will do my best to listen and be patient. I'm reminded that I am not an oncologist so there is only so much I can fix anyway. Just focused on being there, as I sit in the radiology center at the moment, and being a shoulder to cry on. It  is interesting how different we all are. I am quite systematic and practical when it comes to addressing the disease and she is imagining and worrying about horrors i'd just rather ignore. If it has ever happened to anyone my wife will imagine it will happen to her only worse. The imagination is both impressive and disturbing.  I suppose its one way to cope. There is no right way or wrong way there is only her way.  Thanks again for the note and best of luck to you.