caregivers please respond

Hi, I know exactly how you feel. My dad has stage 4 and how I deal is I try not to think of the future because I too know what it will bring. I take day by day and enjoy him while he is here. I let him talk about it when he wants and tell him about all you wonderful people on this support group and I believe it gives him hope. He is not doing well mentally and I try to give him encouragement so he will start to think more positive. I to get jealous when I see other people not going through this. His chemo at this point is shrinking the tumor and my husband is like oh thats great but deep down inside I know what the inevitable will be. I dont think I will be able to handle that day. I saw my best friends mother go through it right to the end and I couldnt even handle that and I only saw her once a month and did not have to be there day in and day out. I hope for the best to your husband and I hope you have many more days with him. Mindy

Hi Bev,

I know how you feel. My husband has Stage 4 to the liver. Our children are 5 and 8. They really can't comprehend what's happening to their dad. I feel anxious when he is resting because the children are loud. I, like you, are trying to maintain a "normal life". I try to keep them quiet, but sometimes it is impossible. Plus, I don't want them to stop being kids because their dad is sick. It's not fair to them.

I have tried to protect them from seeing or hearing my husband when he is throwing up in the bathroom. It is so hard to keep them away and take care of my husband at the same time.

He feels guilty and tries very hard to play with them like he did before. He is doing a great job and I admire him so much. He is a wonderful husband and father.

My advice to you is to not be so hard on yourself. It is normal to feel jealous of people who don't have the stress that cancer patients and caregivers do. You are doing the right thing by discussing your feelings on this site. So many people can relate, just look at all who have responded.

As far as your husband's emotional needs are concerned, I suggest that you listen when he wants to talk, cry when you feel like crying, and if you are having a great day, let it show. Good feelings are contagious. Just be honest and he will to. It's okay to talk about your fears with him. I'm sure he has the same ones as you and it would give him an opportunity to "vent" as well. I hope this helps.

Stacey

OK somehow you have been at my house and have read my mind! I too am a caregiver for hubby with stage 4 with mets to liver and lung. Dx in Sept 2003. It has been a long long struggle and then last week we were told that the chemo isn't working and there isn't anything else to do. Well that is when I knew it was ok to cry. I held it until just a few minutes at our church service and I lost it! I feel stupid but curiously relieved! I know exactly what you mean about trying to live a normal life for my daughter. She is 10 and doesn't know why she can't have friends over etc.
I have turned it over to God cuz I frankly can't deal any more.
I too could go on and on forever but I shall not. God bless each of you and your families. We are only given what we can stand (thank goodness).
Venting in the fabulous room helps. Please don't ever stop. We learn from your strength and share in your pain.
God Bless

Hi Bev - I feel guilty since I am not a caregiver - instead I am the "patient". Sorry for "snooping".

You all are wonderful people doing wonderful things. I can only imagine how difficult it can be at times. I shouldn't even be responding here, but as "the patient" I thought I might be able to lend some perspective.

Be upbeat, please. But not so upbeat that you won't go along, sometimes, when your spouse wants to talk about the possible darker side of things.

We depend on you so much and are so incredibly grateful for your support. My kids are grown (relatively) and out of the house, so thankfully I didn't have to put on any sort of "face" for them. I really empathize with those of you who do.

All that said, I have to say that there is theme here that I think needs to be addressed. So many of you have said that "you know what the future holds" - implication being not at all good - in fact very bad. You all actually do not know what the future holds. Metastatic colon cancer is a horrible thing - but not, these days, necessarily a death sentence. There is much hope. I really believe that a good positive attitude is part of the "cure". The best thing you all can do is to encourage your spouses to have a good attitude and also, PLEASE, have one yourselves. It is NOT crazy to believe that a Stage IV colorectal patient can live a long life - not these days. Is it scary - of course - terrifying actually. But it really is scientifically the case that positive outcomes can be achieved.

So, love your spouses, go with your gut in terms of your responses, protect and love your kids, but PLEASE also don't assume the worst will take place. The BEST thing you can do is be positive in an informed (not naive) way.

I hope this helps and I sure hope I have not offended any wonderful caregivers as that was surely NOT my intent.

Betsy

Hi Bev,
My father is also stage IV with liver mets. He is on the same chemo as your husband and has had about 12 rounds now. I know how you feel. I hate seeing him go through this. It does not seem fair. He is a good person also and has worked hard all his life, he's in his early 60's. This is supposed to be a time to retire soon and relax and enjoy life.
My mother feels like you also. She was commenting recently on how everbody has good things happening in their life and basically was thinking why did this have to happen to us.
This is like a living nightmare and I try not to think too far into the future.
I'm hoping he beats the odds which seemed hopeless until I found this board and read all the NED stories. Now I feel much more hopeful.
Take care,
Sue

Bev, I was caregiver to my husband, Scott, for 18 months. He was diagnosed in Feb. 2004 with Stage IV colon cancer which metastasized to his peritoneal cavity. The only advice I can give you is when he cried, we cried together... when he laughed, we laughed together. The last 18 months were probably the closest we were in a long time. I can say one good thing about Scott being diagnosed with cancer...it made me realize how much I loved Scott and brought us so much closer together.

Linda

Hi Bev et al,

Well, I have been on both sides of the fence so to speak. My sister was dx'ed with intestinal cancer when she was 29 and I was just 27. Though I was not her major caregiver, I was definitely on her cheerleading squad. It was dang hard work, I need not tell you caregivers. Living in close proximity to cancer created a rollercoaster that I resented being on. My sister was also the Queen of Positive Attitude. That in itself was incredibly frustrating because I needed her to be "real" with me and not put on a happy face 24/7. My other sister, who was one of her main caregivers, kept having to remind me that this was HER gig, not mine. I did not get to call the shots. It wasn't about what I needed. But I so needed her to open up and allow us to cry together. She never ever allowed this. It drove a wedge between us. That makes me so sad since I no longer have her. :-(

All this experience with her gave me quite the perspective when I was dx'ed with colon cancer 4 1/2 years ago. I was determined to be real at all times no matter who saw or heard my tears, my joy, my despair, my hope, my frustrations, my determination to live. Granted, I scared my kids a few times with my wailing and weeping, but I wanted them to know what was happening and not have to be wondering. At the time my kids were 15, 13, 11, 9 and 20 months. I really appreciated it when my hubby could cry with his own fears. It made me relieved when everyone didn't have to pussyfoot around me. But I also didn't have time for normal. I needed them to step up to the plate and go to bat for their mama who was not able to do all and be all anymore. Thank You Jesus that my parents moved up to our town to take care of my kids so I could focus on taking care of me and my hubby could continue to work and hold down the fort.

Anyway in a nutshell, for me the best was to have people support me and my decisions no matter what, never lose hope, be real, allow the process of talking about my potential death but not treat me like I was dying, be understanding that I may come across as "selfish" when really it was self-preserving, allow me some morbid moments but be able to laugh about it too, and give me encouragement and applause for all that I was doing to live. And, drum roll please.....making me laugh. Afterall laughter IS the best medicine.

I much preferred being the survivor over the caregiver anyday. Sounds strange? Nope. Not to me. It was awful being the caregiver/cheerleader. Talk about guilt. One day I would pray for God to take her since *I* could not take it anymore and the next I was praying she would have many days of life left. I must say though, when she finally died it was relief that I felt before the deep deep agonizing grief set in. That's an icky feeling. But true.

peace, emily who doesn't ask Why Me but Why Not? Let's make the best of it!

Lindyloo said:

Hi Bev and (everyone else) I'm new to the site & this is my first response. I know exactly how you feel, my husband's diagnoisis of Stage 4 was 18 mos ago, and I keep thinking its a nightmare I'll never wake up from. After 3 good PET scans of the liver (he had liver surgery same time as colon re-section) we found out he had tumors in his lungs. Chemo did shrink them. We were told by one surgeon they were inoperable. We found another surgeon who said he could "cherry pick them out". I can only tell you that after 3 surgeries (last one on Jan 3) my husband is doing very well. He went back to work 2 weeks ago, and will start chemo again on 2/28. The only thing I can say to you is not to give up hope. When I am really down, and I think things look hopeless, I remind myself of all the new medical breakthroughs happening every day, and I think if we can just hold on, maybe a cure is on the horizon. And yes I do envy other people who are not going through this, and seem to be enjoying life. (just today I declined a shopping trip with my girfriend because I knew she would be buying things for her trip to Aruba in 2 weeks and I really could not bear it). And although you may feel like you are on this island all by yourself, with no one else going through it, think again. Cancer is everywhere, and we all need to work together and support one another. My advice to you is to try to enjoy what you can each day - the thing about cancer is that it's so in your face, it's hard to concentrate on anything else in life. Please don't give up hope, and know that people are there for you.
Best regards,
Linda

To Lindyloo and others--
hi, Linda (and everyone else)--I am also quite new to this site and appreciate everyone's perspectives. I'm glad to hear that your husband is doing well. I am a caregiver for my daughter, age 34, whose history seems similar to your husband's. The original tumor in the colon metastasized to her liver and lungs. The liver mets and the original tumor in the colon have been resected, but the lung mets remain, and have thus far been resistent to all of the chemotherapy regimens that she has gone through (Folfox; Folfiri; Avastin; Erbitux; and even one clinical trial). The lung surgeon said that her lung mets were inoperable. I would appreciate learning the name of the lung surgeon who operated on your husband. If you would be so kind to respond, I would greatly appreciate it. You can also respond via e-mail through this site. Were his mets in both lungs? How many were there?
We know what all of you are going through and though it is difficult, we try to remain strong and keep charging ahead, praying that the next regimen will provide the cure. We wish all of you the best.
Best regards,
Lloyd