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Feeling Alone

gabigirl's picture
gabigirl
Posts: 6
Joined: Oct 2013

On 6/13/13 we found out my husband had stage 4 renal cell carcinoma that has spread throughout his body.  The kidney tumor was the size of a volleyball and he had a lemon size tumor in right hummerous bone, cancer in his lungs, scapula, lower lumbar spine and ribs.  Now is has moved into his liver.  Why is it everyone was there in the beginning and now everyone avoids us?  It is very lonely having no one to talk to or turn to when I need to.  Has anyone else experienced this as a caregiver?  It is hard enough caring and watching my husband slowly die but to have friends avoid!

mrs_blkjak's picture
mrs_blkjak
Posts: 87
Joined: Apr 2013

I'm so sorry that you're having a rough time. My husband was diagnosed with stage 4 kidney cancer in March. Now they think its maybe not kidney cancer after all, but maybe testicular cancer. I think you should post on the kidney cancer board. The people there are incredibly supportive and knowledgable. That might help you to feel more supported. 

grandmafay's picture
grandmafay
Posts: 1614
Joined: Aug 2009

I am so sorry that you both are going through this. Caregiving is tough. I cared for my husband for 6 years before losing him to colon cancer. We were very fortunate and had a good support system of family, friends, church family. I found that many people wanted to help, but we had to tell them what we needed. Try reaching out to some of those who were there in the beginning. They may still want to support you but don't know how. Ask a friend to join you for coffee. Let them know that you might need them to stay with your husband while you run errands. Whatever you need. Your life probably feels consumed by caregiving. They have gone back to the life they know. You are in a whole new world That is scary and confusing. Come here whenever you need to talk, vent, or connect with others. I agree that the kidney board probably gets more traffic with more support.  Try it. Take care, Fay. 

twiceblessed's picture
twiceblessed
Posts: 12
Joined: Oct 2012

Cause Cancer is Contagious.....At least that's what my husband and I decided after his diagnosis (Stage 4 Papillary Renal Cell Carcinoma--unknown primary origin).  In the beginning you have all the support in the world and then slowly everyone starts to back off and disappear.  I lost count of how many times in the beginning people came to me and told me "if you need anything at all call me".  When it got to a point that I really needed help, no one was around.  There was one time that Wolfman was in the hospital for a week.  I needed help with someone to be at home when the children got home from school and sit with them until I got home or to atleast sit with Wolfman at the hospital and keep notes on what happened that day so that I could keep up with what the dr said etc.  I called someone "very close" to me and requested help and was told, sorry I don't like hospitals and I'm not good with kids can't you call someone else?.  Then when we moved I asked for help moving our 2 acres (I only have a push mower and Wolfman is physically unable to help me push mow it.)  The person that I asked for help literally said Can't you wait, I don't see where it's a big deal about getting the grass cut.  Really!!!!  So honestly I quit asking for help.  I stopped talking about it online to anyone because I was emailed and told that people didn't want to hear about bad things and I was just bringing them down.  So I don't talk about it to anyone but my therapist anymore and I don't ask for help anymore.  I deal with all the dr's appointments for myself, Wolfman and the kids alone--all the house/yard work, all the errands, all the cooking etc on my own.  I'm tired, worn out and had more than enough of hearing "if you need anything let me know".  I don't let them know because I know they will have some reason/excuse not to ask.  So I'm sorry that i sound bitter--I am.  I'm sorry that I can't tell you that people will gladly help and you won't be alone in all this.  Unfortunately I can't.  My experiences show me that once a person is diagnosed with cancer, then the people who "care" start to disappear and it's just them, the caregiver and their kids (if they have any).  I don't know what the future holds for you and yours.  But I hope it gets better for you.  Hopefully people will see that you need them to support you and not abandon you.  Hopefully, you won't continue to go through this on your own.

grandmafay's picture
grandmafay
Posts: 1614
Joined: Aug 2009

I am sorry you had these experiences. My experience was very different. My family, friends and church friends were really there for me. many of them are still here for me. I need only call and I have someone here to help. Yesterday I had three guys figuring out how to install a new battery in my electric lawn mower. they had to put it in the old housing since the new model didn't come in the same one. They fixed it. When Doug was in treatment, i had people taking turns taking Doug to radiation. They took us to lunch. I had one lady give me a list of things she could do for us that ranged from gardening to ironing. We had a great support system. I'm really sorry your friends have not come through for you. Fay

gabigirl's picture
gabigirl
Posts: 6
Joined: Oct 2013

I appreciate all the responses!

sharpy102's picture
sharpy102
Posts: 339
Joined: Apr 2009

hi Gabigirl:

 

I cannot really answer to your question "why" people leaving you when you need them. It is something I have also experienced 4 years ago when my Mom was sick (I was 12 years old trying to take care of her). It was horrible! Now that I grew older and my rage and anger has passed and I forgave them I am often reflecting back on this whole thing and I can only explain this by them not knowing how to handle the situation. They might be unsure of "should I be sorry for the person and help her in any way indicating to them that they're dying" or "should I act like they are not sick and just tell them all the my days and how my kids are, or work, or my day in the grocery store thus hurt them by indicating that life is so good that they're leaving behind". I mean this is just me thinking that this is what goes in their heads and they really don't know which one is a better way to meet cancer patients so they just avoid the whole situation. And I may be completely wrong here. But I understand you, I was very shocked and was very very frustrated at the time. My Mom was in pain, and was crying all the time, and asking me to call this and that friend, she cannot expect me to somehow take care of her. Yet, those "famous friends" have vanished. I hated them more and more for leaving my Mom behind. So I understand you Gabi girl. All I can say, forget about those things, just focus on you, yourself being there for your husband! He's all you got and you should be there for him no matter how bothering other things are. You just focus on being with him, show him that he can lose many people, but he'll never lose you! I wish you STRENGTH, and PATIENCE...lots of them!

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