Emotional Rollercoaster

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newbride
newbride Member Posts: 142
edited March 2014 in Caregivers #1
This week has been insane. First last Thursday the nurse saw my husband and told me she is concerned that the tumor on his neck was ready to break though the skin and also that the tumor in his mouth is getting larger each time she sees him and she’s concerned it will rupture and we won’t be able to stop the bleeding so she suggested the hospice doctor come by to see him.

On Monday evening the hospice doctor came by – now mind you he did NOT know my husband's medical history at this point regarding the major surgeries he already had. I went over everything with him from January forward to catch him up. So now he looks at the tumor and tells us he is concerned that this thing can rupture and if it starts bleeding while he is sleeping he can choke on his own blood (pleasant visual doc). So he asks him how he would feel about having surgery to debulk the tumor and cauterize it. He even goes as far as telling him that this can slow down the growth of the tumor and maybe buy him some time. Of course my husband is thrilled with this news and I am fuming because this was what I has specifically asked the surgeon if they can do and was told it is not an option – so where does this guy who is not a surgeon nor a cancer doctor feel the right to make false promises? We leave it with he was going to call my husband's surgeon and I was to call him the next day.

Tuesday comes and I call three times to be told each time to call back later – the third time they tell me to call on Wednesday. Wednesday same thing. But now the nurse has come to visit my husband and tells him she is concerned about the bleeding and suggests he is moved to the in patient facility at hospice so he can be watched 24/7 and also their doctors there can evaluate him to see if they can debulk the tumor. He is all for this and we make the arrangements. I get a call 9:00 on Wednesday night – all is arranged he will have a private room, with a pull out couch so I can stay with him if he wants me to.

Thursday morning we move him over, and get him settled in – I still cannot get hold of the hospice doctor --- BUT the surgeon’s office called me in the morning telling me they got a call from the hospice doctor and wanted to know if this was my husband's idea or hospice doctor's because the disease is so far progressed that the debulking really won’t give him more time at all. I told them this thing is about the size of an egg in his mouth and probably will be more comfortable if it is removed and explained about the bleeding, etc. Teh surgeon is willing to perform the surgery if and only if my husband wants it and that he is aware this is only to relieve the symptoms not prolong life and because of the other surgeries will again need a trach. Ok – hello – you think I am telling him this --- NO WAY – the jerk who made false promises will be telling him –TRUST ME ON THAT ONE……unfortunately these idiot doctors do not know who they are dealing with at all.

Ok….so now my husband is all settled in at the facility and is telling each nurse that he is there to have the tumor debulked and live a year longer and they are all looking at him like he’s lost his mind. By the end of the day he is very tired and I’m exhausted and starved so I tell him I am going home and he’s fine with this. I get about 10 minutes from home (20 minutes from the facility) and I get a call on my cell phone – it’s my husband telling me to turn around and get him. I ask what’s wrong he says he doesn’t want to talk about it to just come get him. I turn around and he’s visibly upset. He tells me that the in patient doctor (another new one) came to see him and asked how to relieve his pain – he tells the doctor he didn’t have pain and was there for debulking surgery and the doctor told him that hospice does not do surgery and the in patient unit is for those who have 5-7 days to live (no wonder he’s so upset). Ok, so I get him home and run out to do some errands…meanwhile I can his nurse to tell her what happened and told her to get in touch with the idiot who came over Monday night immediately as I needed to speak with him. The nurse told me she specifically told them at the in patient facility that he was not dying and that he was being admitted for safety reasons.

The other doctor finally called me and I told him what was going on. He told me he called several surgeons in NJ and NONE were willing to do the debulking due to my husband's history and progression of the disease ONLY his surgeon is willing to do it because he was his patient from the start. I told the doctor that he had better find a way to get to my home Friday and tell this to my husband himself because he is the one who blew up this false balloon of hope and I certainly am not going to be the one to deflate it --- that is now HIS job!!

How on earth can doctors make suggestions without knowing the entire history.

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  • pattynonews
    pattynonews Member Posts: 176
    #2
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    you have to stop the rollecoaster
    ok let see to put him through another surgey that is not going to prolong his life is crazy once they open him up they are letting infection in and the infection could take him faster than the cancer, He will have to have a trachea regardless if the tumor is growning that is what happen to jack the tumor grew blocked his airway so it was trachea time, You have to think about everytime they open him up ( like with jack first the port your body is open for infetion ( well Jack got a bad infection after that, then the trahea aftr that it was continus infections, YOur husband can get around the clock nursing at home, and it is the tumor will continue to swell there is no stoping it, poor jack woke up with eyes swollwn shut and they told us the tumor would bleed which it did, from his nose, mouth and trachea we were constantly cleaning him the fluid has no where, We had to make the decison quanlity over quantity keep Jack comfortable was the main thing, it was the hardest thing but i seen what Jack face looked like at the end it was the size of a basket ball it was bad but we kept him comfortable as for hospice i would not trust a hospice doctor to make a decision to cut in to my husband face we did not even trust the nurses they always fell a sleep that is why we did not take him to the facilty we wanted jack to have one on one care with love at the facily yuou dont have that, but really think about letting them cut in to him his immune system is already so bad I think with Jack that is when he went down hill when they put the trachea in we did not have a choice ithad to be done but his body could not fight the surgery of it,

    my prayers are with you I know what you are going through, is just said the hospice doctor gave him false hope and think about why is there no surgeon non willing to do it the isk of infection is so high, I wish you can convience you husband quality over quantity , keep me posted i know how you feel Jack and I were together 18 months 16 months were fighting cancer we were only together 2 months before we found out
  • newbride
    newbride Member Posts: 142
    #3
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    pattynonews said:

    you have to stop the rollecoaster
    ok let see to put him through another surgey that is not going to prolong his life is crazy once they open him up they are letting infection in and the infection could take him faster than the cancer, He will have to have a trachea regardless if the tumor is growning that is what happen to jack the tumor grew blocked his airway so it was trachea time, You have to think about everytime they open him up ( like with jack first the port your body is open for infetion ( well Jack got a bad infection after that, then the trahea aftr that it was continus infections, YOur husband can get around the clock nursing at home, and it is the tumor will continue to swell there is no stoping it, poor jack woke up with eyes swollwn shut and they told us the tumor would bleed which it did, from his nose, mouth and trachea we were constantly cleaning him the fluid has no where, We had to make the decison quanlity over quantity keep Jack comfortable was the main thing, it was the hardest thing but i seen what Jack face looked like at the end it was the size of a basket ball it was bad but we kept him comfortable as for hospice i would not trust a hospice doctor to make a decision to cut in to my husband face we did not even trust the nurses they always fell a sleep that is why we did not take him to the facilty we wanted jack to have one on one care with love at the facily yuou dont have that, but really think about letting them cut in to him his immune system is already so bad I think with Jack that is when he went down hill when they put the trachea in we did not have a choice ithad to be done but his body could not fight the surgery of it,

    my prayers are with you I know what you are going through, is just said the hospice doctor gave him false hope and think about why is there no surgeon non willing to do it the isk of infection is so high, I wish you can convience you husband quality over quantity , keep me posted i know how you feel Jack and I were together 18 months 16 months were fighting cancer we were only together 2 months before we found out

    Thanks Patty
    My husband definately is not having the surgery. He does not want to go through another one knowing that it will not give him any time or any more quality. I don't want him to go through another one either. I just want him to be comfortable. I have already come to terms that I am going to lose him and have been preparing myself for it. I know it will be the hardest thing ever to go through and I will miss him terribly. I keep reminding myself that "30 minutes of wonderful is better than a lifetime of nothing special". I have been getting little sleep since I am worried that he will get up in the night and fall. My step daughter offered to come stay with me for a few nights so I am going to take her up on the offer so maybe I can sleep a little better knowing someone else will be here with us.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #4
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    First, I am so sorry you
    First, I am so sorry you went through what sounds like the week from, H**l. Just the "normal" roller coaster ride is bad enough without all the extra turmoil. I hope you made enough noise about it. We were very fortunate to have our own primary care physician monitoring my husband's hospice care. She was wonderful. I hope things settle down some for you now. I'm glad you are going to ask your step-daughter for help. It will be good for her, too. I think our sons were better able to handled their dad's death because they were there. It will give her a chance to understand what is happening and say her good byes. Take care, Fay
  • pattynonews
    pattynonews Member Posts: 176
    #5
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    newbride said:

    Thanks Patty
    My husband definately is not having the surgery. He does not want to go through another one knowing that it will not give him any time or any more quality. I don't want him to go through another one either. I just want him to be comfortable. I have already come to terms that I am going to lose him and have been preparing myself for it. I know it will be the hardest thing ever to go through and I will miss him terribly. I keep reminding myself that "30 minutes of wonderful is better than a lifetime of nothing special". I have been getting little sleep since I am worried that he will get up in the night and fall. My step daughter offered to come stay with me for a few nights so I am going to take her up on the offer so maybe I can sleep a little better knowing someone else will be here with us.

    there is no preparing
    There is no preparing yourself for what you are going to feel when he goes I thought I was strong, but I lose it everyday, I cried ,I get angry at Jack for leaving me, and I would do anything to have him home, I never felt so bad I feel like somedays Im going to die from a broken heart, and yes get help to relieve you at night, Jacks sister and I took 4 hour shifts at night because we could not trust the hospice nurses, those nurse get 32 a hours to sleep ,I lost all respect for hospice, Jack Ipod was stolen by one ( i bought it special for him, ) and hospice even sent a nurse out who had no experience with trachea or peg tubes,so what was the point, one nurse would tell you something and another one would tell you something else, I did not let them suction Jack give him meds or nothing, I did not trust them with the care , and you have to be careful what you say to each nurse they talk to each other We even had Jacks guitar player come in and help us through out the nights at the end, So if you have someone to help you please bring them in, on Jacks last two weeks i was lucky to get 3 hours a sleep in a 24 hour period, the last week jack was bed bound, it broke my heart and we believe he was in pain and as soon as his dad whisper in his ear it is ok to go home jack, Jack passed, I miss him so much, Jack had continues care at the end but we were there watching everything, some day i wish i can just meet Jack on the other side now, but it does not work that way, but the most thing is to keep him comfortable with the pain meds, and at the end jack stayed a sleep but we always talked to him

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