Caring for a sick husband

morecoffeeplease
morecoffeeplease Member Posts: 12
in Caregivers #1

I am new to this discussion group but after reading the posts I already feel less alone.

My husband was diagnosed in September 2013 with leiomyosarcoma, which is a kind of cancer that is about as rare as it gets. He had surgery to remove a 9 cm tumor from his intestine and after his follow up scan was told he was cancer-free. That changed this past June when his routine scan showed a small mass in his liver, and the biopsy confirmed that the disease had metastasized. His local oncologist wanted to perform surgery immediately to remove the new tumor but we had done our homework and knew that it is better to have sarcoma specialists treat this cancer. So we went to Memorial Sloan Kettering and they said that it would be better for him to have chemotherapy first, to shrink the tumor and hopefully eliminate the undetectable microscopic cells that could cause a re-occurence, followed by surgery. Since our local oncologist/hospital has an alliance with MSK, we are able to get his chemo done locally while our local doctors work in partnership with the specialists at Sloan.

Thats where we are right now. I would like to just say that it is always a good idea to get a second opinion, especially if the disease is extremely dangerous and rare like my husband's is. The patient may just want to "get it over with", but in our case it would have been a bad idea to go with the first treatment recommendation. Do your research, read about the disease, and follow your instincts.

Secondly, I agree with so many of you that caring for a husband can put a real strain on the marriage. My husband is going through mood swings and his constant whining about how he feels starts to really get to me. I load him up with love and sympathy since this is all about "for better or worse". But my husband can be a big baby when he feels lousy and now that he is going through chemo he feels lousy most of the time. Sometimes I just want my old husband back.  (I would NEVER tell anyone I know about this - which is why I appreciate getting to vent here.)

Finally, I have read about how many of us on the caregivers board feel isolated and alone. I am starting to feel that way, too. I am retired so my husband has turned into my full time job, but I have noticed my friends and family are oddly silent about this big change in my life. Nobody wants to talk about depressing subjects, and having a husband diagnosed with stage IV metastatic cancer is pretty grim. But when nobody is looking I find myself starting to feel really depressed. I am starting to suffer from extreme insomnia and like several other people on this board, my stress-eating is causing me to gain weight. I don't really have a question - it is what it is - but I am very relieved that there is a place to come where I feel a little less alone and am surrounded by people who "get it". 

I feel better already! Thank you for listening and good luck to all of you going through the same thing.

Comments

  • Barbaraek
    Barbaraek Member Posts: 626
    #2
    Hang in there

    morecoffeeplease,

    I hear you. I am caring for my husband aged 55 who is battling stage IV nasopharyngeal cancer. He actually trained at MSKCC as a surgical oncologist. You will get excellent care there. Try to take a little bit of time to do something you enjoy...reading, a craft, anything. For me it's quilting or reading...especially when I can't sleep. Try to talk a walk or change your scenery for a short time. We are 6 hours away from any family, but have found support through some online groups and people from our church. You are not alone although sometimes it may feel that way. 

    Wishing you the best,

    Barbara

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
    Fulltime job

    It is a fulltime job caring for your loved one regardless of whether you are still working or retired.  And no one really understands what you go thru except those that have been thru it or are going thru it.  We were both retired and enjoyed camping when my husband was diagnosed five years ago with cancer.  No more camping because treatment became a fulltime job and then afterwards the first year he was too tired to go and I couldn't pull our five wheel camper let alone hook it up and unhook it and set it up.  Then when the cancer came into a second primary it was more treatment because surgery was ruled out.  After that he was NED for about 6 months when the second primary returned and spread to one of his lungs.  He said no more, he had had enough.  From then on out he had maybe 2 1/2 years of fairly good times being able to do for himself and go.  When he couldn't drive anymore due to pain medication, he sure didn't like it but I became the driver and took him wherever he wanted to go when he felt like it. 

    It does wear you down, but I wouldn't trade it for anything, well yes I would if I could have my husband of 53 years back healthy.  The last 6 months of his life were horrible but he never complained, something his hospice nurses didn't understand -- no pain and he was always extremely nice to everyone me included.  I had no help even with 4 grown children and grown grandchildren.  They were too busy with their lives and none of our grown children lived around us well one did and he would show up occasionally to do something.  Even friends were too busy to call and see how things were going.  Even one sister who lived closed by couldn't stop in.  Guess they couldn't deal with it.

    Now with him gone, I really do feel isolated and alone.  I have my two small dogs but it isn't the same.  One thing you have to remember is to take care of yourself and that means taking time for yourself.  My doctor did put me on Xana to help me sleep and to calm me down and it did.  Although some nights there was no sleep and others good sleep, the way it is now too.  It is hard, don't let anyone tell you otherwise and especially those that have never been in your position.  But above all take care of yourself too.

    Wishing you peace and comfort.

  • ted-n-ellie
    ted-n-ellie Member Posts: 3
    #4
    I am so excited to find a

    I am so excited to find a place where other care givers can express their thoughts and what they are going through.  I have been caring for my husband now going on 6 months.  Some days are good and most are not.  I still work full time and am lucky to have a job that allows me to take time off if I need to.  Taking him to and from all his treatments and doctor appointments is exhausting.  Nothing is done for yourself.  I too have been gaining weight because I know I don't eat right.  He can't eat by mouth and it's very difficult to fix a decent meal for one person.  So I just snack.  I don't even feel like I have time to fix me something good.  When I come home from work I am constantly helping him.  I'm tired.  I am very very depressed.  I would feel really guilty to go "shopping" or get away.  And I'd worry about him the entire time.  He sometimes can't even get out of bed so I have to feed him round the clock.  And he isn't getting better.  He takes one step forward and 10 steps back.  Just when we see the light at the end of the tunnel something happens to set him back.  It's frustrating.  I'm no help to anyone but I want to read about other people and what they have done that helped them cope.

  • cheatinlil
    cheatinlil Member Posts: 197
    #5
    ted-n-ellie said:

    I am so excited to find a

    I am so excited to find a place where other care givers can express their thoughts and what they are going through.  I have been caring for my husband now going on 6 months.  Some days are good and most are not.  I still work full time and am lucky to have a job that allows me to take time off if I need to.  Taking him to and from all his treatments and doctor appointments is exhausting.  Nothing is done for yourself.  I too have been gaining weight because I know I don't eat right.  He can't eat by mouth and it's very difficult to fix a decent meal for one person.  So I just snack.  I don't even feel like I have time to fix me something good.  When I come home from work I am constantly helping him.  I'm tired.  I am very very depressed.  I would feel really guilty to go "shopping" or get away.  And I'd worry about him the entire time.  He sometimes can't even get out of bed so I have to feed him round the clock.  And he isn't getting better.  He takes one step forward and 10 steps back.  Just when we see the light at the end of the tunnel something happens to set him back.  It's frustrating.  I'm no help to anyone but I want to read about other people and what they have done that helped them cope.

    Ted-n-Ellie
    you are in my

    Ted-n-Ellie

    you are in my thougts and prayers.  You are a strong person.  Hugs to you.  Sorry you are here :(

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