Been running myself to death and its just the first month

wishing_onstars
wishing_onstars Member Posts: 18 Member
edited March 2014 in Caregivers #1
My fiance was diagnosed with extragonadal mediastinal germ cell tumor (yolk sac) 4 weeks ago stage 3 (possibly stage 4). He has been put on a ventilator to help him breathe because the tumor is blocking his airway and collapsed his left lung. It is causing pressure on his heart that caused pericardial effusion. They admitted him to a hospital that is 1 1/2 hour drive from my home. His mom and I have been switching out staying with him. Every day after work I drive to the hospital then head home late at night. The first couple of days/weeks no one thought he would make it. Everything seemed to keep going wrong. He got a massive blood clot in his arm, ended coding/crashing on them about 2 or 3 times. They called in the family to tell us to get there as soon as possible because he took a turn for the worse. He was in ICU for 2 weeks, and now is on a regular floor that deals with ventilator patients. I am overly exhausted, trying to sleep in a hospital chair that does not lay flat unless you cram your feet in between the seat and foot part to keep it laying flat. I found a neck pillow to be very handy in chairs like that. Everyone is giving money to his mother, but only one person gave me some money for gas. I've been with him for 4 years and we were getting married this year... I really don't care about the money. Somehow, I am making it ok. My family tries their best to help me out (either driving me over there to keep me from falling asleep some nights or bringing me food to eat).

I'm just running to death. I just can't help it I want to see him every day. Just wanted to vent a little... sorry. I just don't know what to do. I can't stay over there because I have to work, but I get to work as early as I can so I can leave early and go see him.

Anyone else feel this way?

Comments

  • SonSon
    SonSon Member Posts: 174
    I feel you...
    Yes - I feel run down and wrung out many (most) times.
    Ask for help - talk to the social worker at the hospital, speak to someone in your religious community, ask a family member of friend for a specific thing that will help you. If it is money, then ask for it. If it is rides then ask for it.
    To just expect people to recognize what you would benefit from without discussion is unrealistic.
    Fatima
  • cowman
    cowman Member Posts: 61
    Running....
    You have much to be exhausted from. It is overwhelming to even think about...at home I am checking on my hubby, working on information updates, bills; when I am at work I am thinking of him and everything that is ahead of us, how he is doing at that moment, etc. It is constantly in the back of my head whirring around if not in the front! Mine hasn't been in the hospital yet but the initial diagnosis, going from test to test, the emotional rollercoaster, figuring out a surgeon - the BEST surgeon..it is very draining. I believe that the emotional drain is worse than the physical. The best advice I got was to take each day as it comes and breathe. I also agree with the first reply that you need to let people know what will help you in the best way. I have learned alot from this and as an outsider, they just can't know what we need until we tell them. My thoughts are with you.

    Diane
  • newbride
    newbride Member Posts: 142
    wishing_onstars
    I'm wishing on those same stars as you are!!! My husband of 2 months has undergone 2 MAJOR surgeries since March to remove an agressive tumor. The first removed 8 weeks before our wedding - the second tumor re-appeared on the next to last day of our honeymoon. He's been in an out of the hospital and has to keep going back for follow ups, etc. The hospital and doctors are an hour from us -- it is physically and emotionally exhausting! Hang in there. If you need to talk or vent....I'm here for you. It's hard enough having to go through this when you've been married several years, etc. But it's that much harder when you are trying to start your new life together and not sure where it will take you (we were together 3 years before the wedding).
  • carolinagirl67
    carolinagirl67 Member Posts: 153
    newbride said:

    wishing_onstars
    I'm wishing on those same stars as you are!!! My husband of 2 months has undergone 2 MAJOR surgeries since March to remove an agressive tumor. The first removed 8 weeks before our wedding - the second tumor re-appeared on the next to last day of our honeymoon. He's been in an out of the hospital and has to keep going back for follow ups, etc. The hospital and doctors are an hour from us -- it is physically and emotionally exhausting! Hang in there. If you need to talk or vent....I'm here for you. It's hard enough having to go through this when you've been married several years, etc. But it's that much harder when you are trying to start your new life together and not sure where it will take you (we were together 3 years before the wedding).

    Husbands
    I feel your pain. My husband was diagnosed when we got back from our honeymoon. He didn't feel too good while we were gone and when we returned he had an ear infection that wouldn't go away. Turned out to be a tumor on his right tonsil and had involved his lymph nodes. Great way to start out our new life together but I do thank God we have each other. Lean on the people that you know will help you. Sometimes I feel so alone. But I have learned to ask for help. My mom will do what ever I need her to I just have to ask her. Hang in there. I will keep you in my prayers.

    Take Care,
    Donna
  • wishing_onstars
    wishing_onstars Member Posts: 18 Member
    newbride said:

    wishing_onstars
    I'm wishing on those same stars as you are!!! My husband of 2 months has undergone 2 MAJOR surgeries since March to remove an agressive tumor. The first removed 8 weeks before our wedding - the second tumor re-appeared on the next to last day of our honeymoon. He's been in an out of the hospital and has to keep going back for follow ups, etc. The hospital and doctors are an hour from us -- it is physically and emotionally exhausting! Hang in there. If you need to talk or vent....I'm here for you. It's hard enough having to go through this when you've been married several years, etc. But it's that much harder when you are trying to start your new life together and not sure where it will take you (we were together 3 years before the wedding).

    thanks everyone
    I really need someone to talk to that is inspirational and not negative all the time. I thank everyone that has responded on here. There are some people that come to visit Chad because they are saying their "last goodbyes" and not really saying anything of hope. It's been almost 5 weeks since he's been in the hospital (will be Thursday). I've been over here ever day, and drive back every day back to go to work through the weekday. I stay here on the weekends. I know I am not married to him, but I might as well be. I feel so helpless now. The chemo he's got now is making him sick and is throwing up and looks so pitiful. I do what I can to help, I'll give him a bath, shave him, help him get things he wants. He can't talk since he is on a trache and I've been trying to read lips, and get pin and paper when he is strong enough to write. My faith has got stronger since all of this has happened. I think that is the only thing that is keeping me going right now.

    I know how everyone feels probably like me, or feel like your the only one that is going through such an ordeal. I hope and pray everything works out for all of us. I just was wanting to talk to anyone that wanted to be encouraging to each other. If that makes sense.

    Talena