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My husband has started hospice!!!! I can't believe we here.

AngKad42
Posts: 26
Joined: Jan 2011

My husband was diagnosed with metastatic melanoma in Nov. of 2010 and had to have a brain tumor removed in Dec. 2010; we are in our early 40's and have been married for 21 years. I never thought we would end up here at this time in our lives. We have 3 wonderful children, not kids anymore, oldest is 20 and the youngest is 16. Last summer we were given a shot at hope with a "miracle "drug called Zolbraf and it was working, kicking ass and taking names with the tumors he had. Now, it has stopped working. Just like that, "poof" not killing the cancer anymore. I know I should be grateful for the time we have been given, but I just feel cheated and pissed off!! He was always my big, strong hubby, never and I mean never sick, and then this crap. He keeps talking about me finding someone else when enough time has gone by and it makes me want to vomit!!! I don't want someone else, I want him. Friends and family are upset that I don't want to get on the phone and "chat" about how I feel, how he feels, how my kids feel. How do they think we feel?!!?!? I know they just want to help, but it gets annoying; they have no idea what this is like. Then I feel like a witch because I don't get on the phone with them.
The doctor said he could last "a couple months"; and hubby wants to fight it out until after the holidays but of course we have no real idea when it will happen. Part of me wants to know how long, and another part of me doesn't want to know at all. And then I have my parents asking me what I am going to do once he is gone ( he was of course our main provider) I have no idea. I'm so lost.

CANCER SUCKS!!! Why is it we can put some stupid robot on Mars and we can't cure this crappy monster that beats that hell out of people and robs us of our loved ones?!?!!?!?!?

Just needed to vent, Angie

grandmafay's picture
grandmafay
Posts: 1610
Joined: Aug 2009

I am so sorry you have come to this place and time. Vent away. It is really tough when they say there is nothing more to do. My husband survived colon cancer for 6 years. The day the doctor said there was nothing more we could do was hard even though we expected it. We both held up pretty well in the dr. office. My husband even thanked him for his care. Then he went to the car and I went on to tell the chemo nurse that he wouldn't be coming in. She walked me to the car, and we all cried together. He lasted about a month after that. We were married for 42 years. I know that is longer than you have had, but I can tell you that it is never long enough. My husband wanted to be sure I would be ok and that our "affairs were in order." He needed to talk about some of the things that I would need to do when he was gone. We had already gone over most things. It hurt to hear him talk about the distributions of his collections, etc, but I realized that it wasn't about me. It was about his peace of mind. I often assured my husband that I was a strong, independent woman and I'd be fine. I didn't always believe it myself, but I kept repeating it. I understand that you are facing the greatest fear of your life, the loss of your other half. It is really scary. Right now just do the best you can. Try to concentrate on the now. Cherish this time as difficult as that is. Believe it or not, some of my most cherished memories come from those last days. My husband had a wonderful sense of humor which helped all of us get through that time. Please feel free to private message me at any time. If you would just like to talk, I can give you my phone number then. Know that you are not alone. Sadly, many here have experience the hospice care for our loved ones. My thoughts are with you and your family. Fay

3Mana
Posts: 829
Joined: Aug 2010

Angie,
I'm so sorry to hear you have to go through this. I lost my husband in Mar. of 2010 only 2 months after he was diagnosed. He was always fit & active and never sick, so this was a shock to us when we found out he had cancer. It started with a backache which we thought was from all the yard work he had done the last summer. It had originated in his lung and spread to his back, with lesions in his brain. Radiation did wonders for the brain . Then he started chemo, of which one was Avastin. That killed him cause he had a very rare side effect.
Anyhow if you don't want to talk about it with friends or family, come here and talk cause we've all been through it, so we understand. Also like grandma fay said, you can send me a private message also. She was a big support to me cause we were going through this at the same time about.
We were just married 46 years. Tom was going to retire that June, and we had so many plans. We also knew each other since we were in 1st grade, so it was like part of me died that nite also. It's hard to go on, but my 3 kids, 2 daughter=in-laws & 3 grandsons have given me so much support and a reason to live.
Please let your husband know how much you love him, cause it means alot to them.
Take care. "Carole"

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Hi, Angie.

I understand and share some of your emotion, especially the intensity I feel in your words. My situation is different, but the pain and frustration is the same. I lost my 29 year old son to brain cancer on October 15th. The light and color is gone from my world.

David was also in perfect health--never, and I mean NEVER--sick. Then one day he had a headache that didn't go away. Had an MRI, found a tumor, next day, brain surgery. A week after surgery pathology report showed terminal brain cancer--median life expectancy 3-5 years. He was 25 years old. TWENTY-FIVE! Just graduated from college two weeks earlier, his whole life ahead of him. An athlete, in top physical shape, ripped, six pack abs.....my baby. I don't know how I will ever, ever, ever recover from his death.

The title of your post caught my heart..."started hospice...can't believe we are here!!!" I fought as hard as I could for as long as I could to keep hospice out of my home but I had to give in, for my son's sake. I couldn't subject him to any more trips to the doctor and he needed professionals who could really manage his pain medicine on a daily basis. I couldn't believe that I had to call hospice for my 29 year old son.

I also feel the same....all the things we can do, like robots on Mars, and yet it feels like we are still blindly stumbling around with cancer treatments.

I'm sorry that I don't have anything constructive to say...please forgive me for that. But please know that I understand and share your feelings.

Love and blessings and strength to you and your family.
Cindy in Salem, OR

AngKad42
Posts: 26
Joined: Jan 2011

Thank you all so much for the support, and to each of you I am sorry that cancer has taken your loved ones. My husband is hanging in there, the nurses have been great, his pain is being managed and most of the time he's very comfortable. Some times he talks as if he will be getting better, other times he is raging or crying or telling me he is sorry about putting me through this. As if he planned it?!?!? I keep telling him he has nothing to be sorry about. Had a tough time when my parents visited (we do not live close to any family, they are coming in spurts from different places); I fell apart when I heard my dad thanking my husband for taking care of me for the past 21 years. Both my parents had a hard time seeing him like this and of course they hurt because we are all hurting here. They also pulled me aside to find out what my plans for later are and what we have in the way of life insurance, etc. Well, we no longer have life insurance because my husband was laid off from his company in April; it was a company wide lay off, just that he happened to be on the list that was to be laid off. Bastards! He is on social security disability but we lost the life insurance to the lay off. I have quit working to be with my husband and take care of him, so while I have been making plans for later, there are things that will have to be worked out when he leaves us. I have had a couple issues with some of the family not accepting what is going on and I understand they want to help, but if your not here everyday, and if you have never been in hospice, you don't understand how things work. My husband has very bad lymphedema in his leg and groin, and I have ask his nurse if we could get a massage therapist in to teach me the message or give it to him, and it has been a couple weeks since I asked and his nurse said she is waiting for the hospice doctor to order it and make arrangements (they only have one massage therapist we live in a small town)and a couple of people have ask if they could call and quote "light a fire under someone " to get them out. But they don't live here and every time I call, they take my name, number, husbands name and message and have his nurse call me back. I believe that the others who want to call would get the same thing and I don't want any one trying to "light a fire" under his nurse!!! LoL anyway, I guess there is nothing easy about any of this of any one who loves him. And really we know that there are tumors blocking the area where the fluid has built up so massage may not do anything to help him.
I am frustrated because I have found a couple of drug trials that we had not seen before hospice started and I did get to talk to one doctor in one of the trials and he was very nice and very honest. The trial is in phase one and in another state. My husband would have to go to the hospital running the trial for days and weeks at a time, he would have to be able to get on a tread mill and walk fast and run. Hospice would of course be gone so that means his pain meds would be gone, he can't walk much less run. I feel angry because I feel like I would move friggin mountains to make him better and I can't get him to this other state or on a damn tread mill!!!! It is all just frustrating and scary and it sucks!!!
Thinking back to the day or evening rather that the surgeon told me the lump he had taken from my husbands thigh was cancer, I remember being in shock and then thinking," okay, well we have some work to do. He will be okay because I can not be without him and God knows that and his kids need him. He is young and strong and he will beat this damn thing." Then the recovery nurse (it was an outpatient procedure) told me the doctor had gone home before my husband was really awake and the nurses didn't want to tell him and upset him because they had to close down the out patient recovery room and "we thought it might be best if you told him when you got home. He is still out of it because of the medications." I said "You mean he doesn't know?! The doctor didn't tell him?!" "No," she said. This was as we were walking down the hall to the recovery room; my heart started pounding and my mind is racing; how the hell do I tell my beautiful, strong husband that he has cancer?!?!? Well, I swallowed my anger and fear and got him dressed and got his scripts and release papers and while the nurse put him in the wheel chair I went out and go my car. I didn't cry, I was holding it together with anger and got him in the car. I drove to the end of the hospital parking lot and stopped the car. My husband looked at me, confused and I grabbed his hand. I took a deep breath and simply said " The doctor got all of the tumor and he had to take a lymph node, and we don't know what kind yet but he said it was cancer." I watched my brave, strong husband crumble, and we both cried; he said he was too young to die, and I grabbed his face in my hands and looked him in the eye; "your not going any where.We will do whatever we have to do, and we will beat this damn thing! We don't even know what it is yet, or if it is any where else. We will go home, sit the kids down and tell them, and fight this damn thing with everything we have. I won't let you die." It was Thanksgiving that weekend and we were thankful it had been found and that he was young and strong and had lots of love around him, we would face it and we would be positive and we would beat the hell out of cancer. Ha if only, we did fight, it was a blow to hear it was melanoma and it was hell when I started researching it, it tried to beat down my resolve to beat it, but I sat and told my husband everything I had read (even though part of me didn't want to tell him everything, thinking it would beat down his resolve and destroy all the positive thinking I had instilled him in the week since we knew it was cancer. And by then I was no longer angry about being the one who had to break the news to him, I was and am glad that I was the one, that moment is ours and he didn't have to hold in his fear and anger because he was in front of a doctor or nurse. It was a moment that showed me all the years I thought I was weak and he was my rock and that I could never handle things like that, I was wrong, I wasn't as weak as I thought and while he is still my rock, I learned that I was also his rock. And I believe now, that it was just supposed to happen that way for him and for me. It is not a great,happy moment in our lives, but it was a moment that is just ours.
Okay, I think I have rambled enough.... stuff to do and he is sleeping so I should try to get those things done. Thanks again to all of you here, I don't know what I would do if I didn't have a place to vent to people who unfortunately understand me and what I am going through. Bless you all, Angie

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