I am not the strong one.

Annie0813 Member Posts: 1

This is my second round of becoming the caregiver. The first round was May, 2016 when my husband was diagnosed with kidney cancer.  He had cryoablation (froze the tumor) at that time and he was sick for awhile, but it "wasn't that bad".  In his followup the end of June, 2017 we discovered the tumor has regrown and the cancer taken over part of the kidney.  We went for a second opinion and they feel the cancer may be in the bladder.  My husband goes for more testing next week to determine how bad things are and what the next step is.  He has a blood clotting disorder and a history of pulmonary embolisms that complicates everything.  

I feel very alone; none of our friends seem to really care or know how to show it.  I would love to attend a support group, but there are none in my area.  Even the hospital and doctors he goes to are two hours away.  My husband asked me to be strong for him, I feel like I can't do this.  I am not the strong one, he is.  We are both taking this very hard.  I am struggling to be there for my husband and take care of him while I take care of myself.  



  • soonermom
    soonermom Member Posts: 155
    I am so sorry

    We have no support groups either. Online was the only place I could find information.  Our friends have been great and really tried.  I think friends don't know what to say or do.  I mean they really just can't get it and they feel vulnerable when they hear the story.  It is like they think it could happen to them and our situation makes them think of that possibility.  Plus to be honest, I think I responded the same way until this happened to me.  That is what I meant by they just can't get it.  Some things in life you just can't fathom.  I have found that as the caregiver I can't be sad or have a need because compared to the person with the disease I am not entitled.  Problem is I am sad and I still have needs of my own brought on by this situation. I just try to have my breakdowns in private.  I have one friend that has a husband with cancer.  She is the only person I can talk to without being judged.  But we are both so stressed out and busy with the demands of the disease that we barely can find time to connect.  I have also found a few people online that have really helped me get through a few rough spots.  At one point I thought one or both of us needed a therapist but could not find the time to set it up or go :). Hang in there.  Hopefully you will have better days and as we know some worse days.  Part of it I just think every day I have to decide to look for whatever tiny, tiny postive note I can find and focus on that for that day.  Some days though I don't have the energy to look for the tiny positive element so I try again the next day.  Caregiving is hard.  I've tried really hard to accept it and embrace the journey we are on together knowing it, sadly, might not go the way we want it too.  You are processing a lot of new information and a hard blow to your hopes.  I hope you can give yourself time to get through this and be gentle with yourself until you can get your footing.  It is a lot to take in for anyone.  

  • JosephK
    JosephK Member Posts: 64
    Annie, I feel for you. All

    Annie, I feel for you. All you can do is love your husband and support him. If you love him by being affectionate and understanding he will feel it and that would be good enough. Just be there for him and help him when he needs it.

  • Ellie1229
    Ellie1229 Member Posts: 4
    Annie0813, I feel for you. I

    Annie0813, I feel for you. I have only been the caregiver for my husband with this disease for a short time. He was diagnosed in May with esophageal cancer. Although there are people around me and friends I message on FB I too feel alone. I pray and that helps. I cry when I am alone, because even though he's doing chemo, and even though the doctor is very positive, it's still hard to see your husband suffer. I have one friend I call when I am upset and when she answers the phone I say "Talk to me. Just tell me anything, just talk, and don't stop talking until you run out of stuff "(which she never does). So while I listen to her it gives me the chance to think of something else and to calm myself. Maybe you have a friend that will do that for you. It really does help.

  • GingerMay
    GingerMay Member Posts: 134
    edited July 2017 #5
    I can relate

    Annie I can relate to what you are going through.  I'm sorry for what brought you here, but I don't think you are alone in your feelings.  Friends disappear or say and do inappropriate things. I believe it is because they think they will catch whatever it was that brought this upon us.  And on the other side, I really don't care about someone's broken leg or wedding engagement or what seems like banal postings people put on facebook. As for support groups, I wish my experience with them was helpful but I found it to be a room of people sitting in a circle crying which wasn't what I needed.  

    If you haven't tried it, I would suggest the chat room section on this site which seems more active later in the evenings. Walking or being in nature helps me, getting sleep each night (sometimes very hard), reading a magazine for a mental break even for a few minutes helps too. Looking back, I know I was one those people who shrugged at others who had cancer because I didn't understand that they had just been hit with a cannon ball.  Blessings to you and your husband.  You can always post here whenever you need to vent.   

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    Annie -

    Sorry you have to go through this a second time. Glad you've found this forum. 

    Have you checked out the kidney cancer specific forum? You'll find a bunch of folks who are spouses, significant others, and caregivers - in addition to the folks who are patients. We patients sure are appreciative of caregivers, so there's quite a bit of connecting going on.

    Also, every year that goes by, new treatments and protocols are developed and come into use. Prognoses improve.  The "way it was" even last year is not necessarily the way things are being done this year.

    What hasn't changed, unfortunately, is how difficult the blasted waiting is. Fortunately, you know you need to take care of yourself, along with being there for your husband. 

    All the best - keep us posted - and if you get a chance, do consider hanging out on the kidney forum page here, too.