New to this board...Need Support

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iVillage Member
Registered: 03-30-2003
New to this board...Need Support
18
Sat, 09-30-2006 - 1:48am

Hi everyone. I am very happy you all are here for support -- I really need it. I just hate having to come to a cancer board.

You see, I lost my husband about 2 years ago after a long, terrible battle with kidney cancer. The grief I went through was so much more than I ever imagined. The first 6 months I literally did NOTHING but stay in my home and lay around...I only got up to feed & let my dogs out. I had a couple very dear friends who kept coming over & calling to make sure I would eat & eventually got me to go out of the house every once in a while for a yoga class, then eventually for lunch.

Then some months ago I talked to my exhusband, who lived 50 miles away, on the phone and we eventually met for lunch a few times,and then seeing each other regularly. Then 3 months ago he is diagnosed with esophageal cancer. It seems he was just fine -- big, strong & active -- and then within a few weeks of feeling some pain & trouble swallowing, he was diagnosed and had lost over 25 pounds. By now I had left my home to come down & stay at his home with him.

Then his esophagus closed completely up, he couldn't even swallow his own spit & was aspirating it at night & not able to even take in liquid nutrition. So he had a feeding tube put in. But that didn't help the "can't swallow spit" problem & he kept getting sicker & sicker. He finally was transferred to a hospital 100 miles away to have a special stent put in his esophagus to hold it open.

He is now so sick & had lost about 50 pounds. He's completed radiation treatment & was undergoing his 2nd round of chemo when his heart started to go wacko. Now we find out he has a blood clot on his mitral valve. It just seems that it's one thing after another...and so quickly.

When we first got the diagnosis I couldn't believe it...I really felt like I went into shock, then when he came home from the hospital I felt like I was going back into that "robot" like behavior of just taking care of him & turning off my feeling like I kinda ended up doing alot towards the end with my husband. I don't want to do that again...Even after this time I still sometimes feel the guilt thinking during the times I did that I should have talked with him more & more during those times. I don't know, I guess some of us always feel there were always things left unsaid...

I know I'm rattling on. I'm just having a VERY difficult time with this. I'm so scared. Everything I've read & everyone I've talked to is not too positive about this type of cancer. And he just seems to be getting so much sicker so much faster that I can't think straight. And even though he had that stent put in so he could eat, he's already to the point that he doesn't even care to. He is living on ensure and he wouldn't do that or even drink any fluids if I didn't remind him.

Thanks for "listening". Everyone take good care. Karen

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iVillage Member
Registered: 03-22-2003
Mon, 10-02-2006 - 3:40am

Karen welcome to the board :)

Judy

cl-ivhjude

Avatar for klmuc
iVillage Member
Registered: 03-30-2003
Tue, 10-03-2006 - 7:39pm

Thank you so much for your response, Judy. You are very right, it is extremely difficult to go through this after just going through a death from cancer a couple years ago. My husband died after a 2 yr long battle -- so that was a long, scary road. I went to Hospice bereavement therapy after his death & in the 10th month of therapy, my mother died (not from cancer, but unexpectedly).

Here lately I've been feeling like I just want to rip off my clothes & run down the street screaming! (I know they'd put me in a place where someone would take care of me then, but it wouldn't be a place I'd WANT to be!) So, I know it is time for me to go talk to someone again.

We went to the onc. yesterday & I picked up a ACS handout that lists groups, etc. But the dr explained that he can not treat my ex right now because his health is so compromised, the blood clot in his heart keeps him from being able to continue with any chemo. So he referred us to Hospice. He did say if his health improves enough he can be discharged from Hospice & come back in for treatment.

I was so afraid of this. I've just noticed changes in his behavior that I've seen before, they started a couple months before my husband died. But, as you said, it probably is very difficult for me to be able to look at any of this very possitively cosidering my past experience.

He will still be taking medications to try & dissolve the blood clot so I guess his health could improve, right? And perhaps the heart issue is causing some of the symptoms I'm seeing. I know after heart attacks & such most people go through depression & other things. We see the cardio Monday so maybe I can find out.

The onc said he felt we really needed Hospice, that I looked totally worn out and he felt I just couldn't do it all anymore. And so long as my ex isn't receiving treatment we're eligible.

Thank you so for the thoughts & prayers as I pray for all those who are going such difficult times here.

Karen

iVillage Member
Registered: 03-22-2003
Fri, 10-06-2006 - 2:23am

Karen I continue to send positive thoughts and energy your direction, your life has had too much tragedy in it so catch some of that positive energy coming at you and use it.


Hospice is a wonderful program and the doctor is right in that at any time your ex wants to continue with treatment as his health improves he can do so.

Judy

cl-ivhjude

iVillage Member
Registered: 03-19-2003
Fri, 10-06-2006 - 2:37am

Hi Karen:


You are a very special person to step up and take this on.

Hope everyone has a great Summer!

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Avatar for klmuc
iVillage Member
Registered: 03-30-2003
Sat, 10-07-2006 - 12:30am

Judy, Thank you -- I will work on catching as much of that positive energy you are sending and use it. And for the prayers, we have friends, family & friends of family all praying & I believe that prayer does help.

Hospice has been here to visit & has already been a great help. They will be a great support since, while I have a great family, none of them live nearby. The closest is our son who lives almost 2 hours awayand visits as often as he can. But all of them have said just a call and they will come. But of course they can not be here on a regular basis as Hospice can be.

I am praying for some calmness amidst this chaos also. I was always one who did relaxation exercises & meditation on a daily basis -- I taught my son to do this when he was very young to help him cope with everyday stresses. But when my husband died I found my mind so scattered that what I had mastered so well was just gone...I had gotten a little better but it has been much more difficult lately. I have bought an excellent cd to help guide me -- I find with a little guidance I can accomplish a little.

Thank you again. I am not giving up hope.

Karen

Avatar for klmuc
iVillage Member
Registered: 03-30-2003
Sat, 10-07-2006 - 12:56am

Hi Philly. I am just thankful that we got back with each other before this happened -- if we were not back together he would be going through this all alone. And we had some nice times together before he got sick.

When he learned my mother had become very ill & was in the hospital he called right away & said he was coming to get me to go to Alabama so I could see her in the hospital. We knew she was pretty sick but never thought she was going to die -- thank God he did that for me, I couldn't have driven up there on my own (I have MS & can't drive far distances) that was the last time I saw her. And it does me good to know that she was VERY happy to see him with me -- she always loved him so.

It is very difficult, overwhelming at times, but I can not imagine not being here for him. I just sometimes look up at the heavens and have to ask "why?" I can't understand why again? And so soon. But I guess there is no understanding, huh?

It is encouraging to hear about your friend surviving this cancer since I've heard so much bad. And his brother just died last year after having the surgery for this same cancer. (yet another tragedy...geesh, sounds like a soap opera as I write this).
I need to tell him I heard of someone who survived -- when we got the diagnosis he looked at me and gave me the thumbs down and said "that's it I'm dead". He talked about how long his brother lived from diagnosis to death (5 mos)& said that's probably the road he'd go down. Sometimes I think he still has that in the back of his mind & may just allow it to happen, with little things he says & the way he acts.

We've talked about it & he says he wants to live but he doesn't seem to have much fight in him. It's looking like he's giving up. I'm really afraid. I pray every day & night that he will think more positively. The grandkids are coming over tomorrow so maybe that will help.

Thanks Philly & Hugs back, Karen

iVillage Member
Registered: 03-19-2003
Sun, 10-08-2006 - 2:30pm

Hi Karen


I just wrote a long post to you............cyber space ate it!!!

Hope everyone has a great Summer!

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Community Leader
Registered: 10-22-2001
Tue, 10-24-2006 - 2:19pm
Hugs!
Nightangel
Community Leader
Registered: 10-22-2001
Thu, 10-26-2006 - 12:05pm
Dear Karen,
My heart goes out to you.
My aunt is going through a similar situation.
My uncle (my beloved mom's brother) died of cancer and her second husband (my ex-husband's uncle) was diagnosed with cancer.
She too is having a hard time dealing with it due to losing other family members.
The best part about this place is just knowing you are not ALONE.
Just waiting to hear the results about a skin biopsy I had and I have found so much comfort in coming here.
I think you are an amazing woman for being there for him.
Hopefully, we can be here for you.
God bless you I will remember you in my thoughts and prayers.
Lorie
Nightangel
Avatar for klmuc
iVillage Member
Registered: 03-30-2003
Fri, 10-27-2006 - 9:10pm

Oh Lorie, thank you for the hugs! Can always use those. You're so very thoughtful.

It is very difficult to be going through this again -- I'm sure your aunt is having much of the same emotional upheavals I'm having. I hate to hear someone else is going through this. I know there are others out there, but it does feel like you're all alone when you're going through something like this. So, you're right about knowing you all are here for me -- and that I'm NOT alone -- means a lot to me.

When do you get your results back? I will be praying for good results.

Thank you for being there.

Karen

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