I'm worried about my husband

cbcardb12
cbcardb12 Member Posts: 84
edited March 2014 in Colorectal Cancer #1
It's been a while since I posted, so a little background: my 58 year old husband was dx with stage 4 rectal cancer (with too numerous to count mets)to his liver. He is on foxfiri w/avastin & oxy. He has been doing very well. Even his drs are surprised at how well, and have gradually backed off from the "2 years of quality life" speech that we were hearing at the beginning. But now, I have started to have really bad thoughts about his survival. I think about it all the time, and that is really not the way I wanted to live my life. I had decided that none of us can live like that; wondering when and if he was going to die too soon. So, here I was doing well, living & trying to enjoy every moment, then all of a sudden, I can't. I think part of the problem is, I've not been to one of his treatments in a while, and I'm not sure he is telling me everything. Last week he started have pain in his back on the right side. He says he may have a kidney infection because of drinking sodas & such. He had a cat scan last week & he says the drs says some of the tumors are shrinking, and some are the same size, and the largest one which was 10cm is down to 6cm, but didn't really shrink too much since he started oxy. He told our son & his brother that he was told he has arthritis in his spine, but he didn't tell me. When I asked him about it, he said he did tell me (chemo brain?). Anyway, I thought maybe the back ache is from the arthritis, but he says he doesn't think so, he thinks it's his kidneys. I'm worried that he was told something bad (cancer has spread) but he isn't telling me because he knows I worry. The problem is, I worry more when I don't know what's really going on, and I start to amagine the worse. I know that we will have bumps in the road, but now I don't know. I'm sorry, just needed to vent. Thanks for listening.

Carolyn

Comments

  • karguy
    karguy Member Posts: 1,020 Member
    #2
    Worried
    I think your husband loves you so much that he may not want you to worry,and he may also be telling you the truth.I think you should trust him,and if you really want to know,go with him to the treatments and aks the doctors.Best of luck
  • cbcardb12
    cbcardb12 Member Posts: 84
    #3
    karguy said:

    Worried
    I think your husband loves you so much that he may not want you to worry,and he may also be telling you the truth.I think you should trust him,and if you really want to know,go with him to the treatments and aks the doctors.Best of luck

    I told him that
    I was going with him. He has another cat scan in 6 weeks, and I was going with him for the treatment & the results of the scan. He likes to be able to do things for himself, but he forgets to ask questions or leaves the notes at home, and I'm just not the type to sit back and let bad things happen. On the other hand, he very strong & independent and wants to do for himself. It's hard to find a balance. Thanks for the advice.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #4
    Been there
    Carolyn,

    I know how you feel. I'm the cancer survivor, but I've also been the caregiver for my husband, who survived a sudden cardiac arrest and was implanted with a defibrillator. I used to go to all his appointments with him, and lately I haven't been able to very often. I always worry that he's sugar coating what the doctor really said.

    So my advice would be to do whatever you can to arrange to go to his appointments, and then you won't have to wonder anymore. I wish you well.

    *hugs*
    Gail
  • shrevebud
    shrevebud Member Posts: 105
    #5
    Hi Carolyn:

    I'm 49 and have been battling stage IV colon cancer for over two and a half years. I have had a backache (on the right side) nearly this whole time. In fact, I had a really bad backache before I was diagnosed - I thought I had hurt myself at the gym, but of course later found out that wasn't it at all. Sometimes my back hurts really bad and then it eases up. I complained about it so much that my oncologist ordered a bone scan the latter part of this summer just to make sure that cancer had not spread to my spine or other bones. A CT scan won't show bone involvement - it has to be a PET or a bone scan. It very well could be arthritis. In my case there doesn't appear to be a real reason as to why I have pain and certain things like driving long distances or sometimes even short ones aggravates it. I've also told my other internal medicine doc about having this pain, so everyone is aware. I take pain pills (Lortab) as I need them and they help. Possibly there is no specific reason for your husband's pain - it could be his kidneys - I asked about mine too as a possible source of pain - they are fine btw or it could be as he said arthritis in his spine. A lot of people with cancer have pain - maybe your husband needs something (a prescription pain reliever) that he can take to keep it at bay or calm it down whenever it flares up. Just a suggestion. Hope this helps. Take care. Roy
  • cbcardb12
    cbcardb12 Member Posts: 84
    #6
    shrevebud said:

    Hi Carolyn:

    I'm 49 and have been battling stage IV colon cancer for over two and a half years. I have had a backache (on the right side) nearly this whole time. In fact, I had a really bad backache before I was diagnosed - I thought I had hurt myself at the gym, but of course later found out that wasn't it at all. Sometimes my back hurts really bad and then it eases up. I complained about it so much that my oncologist ordered a bone scan the latter part of this summer just to make sure that cancer had not spread to my spine or other bones. A CT scan won't show bone involvement - it has to be a PET or a bone scan. It very well could be arthritis. In my case there doesn't appear to be a real reason as to why I have pain and certain things like driving long distances or sometimes even short ones aggravates it. I've also told my other internal medicine doc about having this pain, so everyone is aware. I take pain pills (Lortab) as I need them and they help. Possibly there is no specific reason for your husband's pain - it could be his kidneys - I asked about mine too as a possible source of pain - they are fine btw or it could be as he said arthritis in his spine. A lot of people with cancer have pain - maybe your husband needs something (a prescription pain reliever) that he can take to keep it at bay or calm it down whenever it flares up. Just a suggestion. Hope this helps. Take care. Roy

    Thanks Roy
    I am definitely taking your advice! I will start back going to his appointments, and making sure that I any and all ailments to his drs attention. He was given a pain medication precription early on, and has been taking them. They seem to be doing the job, but not for long. He is just so stubborn, that he doesn't really like taking them. The dr said he could give him another prescription if he needed it. I am also going to ask for a PET or bone scan, although this dr has never, ever mentioned a PET scan. I remember someone else on the board saying that some drs use it all the time, and in conjunction with cat scans, and some drs never use it. I think his dr may fall into that category. I will definitely ask. I have so many questions for him. I keep asking my husband what the drs goal is for the chemo etc? What happens if and when the tumors shrink enough in number and size? I really don't think this dr is thinking about a liver resection. That has been a huge problem for me. I think he is just doing chemo to get my husband to the 2 yr mark. That really frightens me, and that will definitely be my first questions. Thanks so much for the advice and insight. I must say, I don't know what I would do without this board and all the wonderful folks on here.

    Carolyn
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #7
    cbcardb12 said:

    Thanks Roy
    I am definitely taking your advice! I will start back going to his appointments, and making sure that I any and all ailments to his drs attention. He was given a pain medication precription early on, and has been taking them. They seem to be doing the job, but not for long. He is just so stubborn, that he doesn't really like taking them. The dr said he could give him another prescription if he needed it. I am also going to ask for a PET or bone scan, although this dr has never, ever mentioned a PET scan. I remember someone else on the board saying that some drs use it all the time, and in conjunction with cat scans, and some drs never use it. I think his dr may fall into that category. I will definitely ask. I have so many questions for him. I keep asking my husband what the drs goal is for the chemo etc? What happens if and when the tumors shrink enough in number and size? I really don't think this dr is thinking about a liver resection. That has been a huge problem for me. I think he is just doing chemo to get my husband to the 2 yr mark. That really frightens me, and that will definitely be my first questions. Thanks so much for the advice and insight. I must say, I don't know what I would do without this board and all the wonderful folks on here.

    Carolyn

    Carolyn........
    don't worry, we will be sending a bill for the advice..........JUST KIDDIN'....keep the chin up girl, a caregiver is a very demanding job and you are doing wonderfully at it...kuddos to you !!!...may you both be blessed, Clift
  • Janet3
    Janet3 Member Posts: 59
    #8
    Great job.
    Well, I don't have to tell you what a tough job being a caregiver to a loved one is. I'm caring for my mom who was diagnosed 30JUNE09 with Stage IV - she's 61. I go with her to all appointments and treatments. She is the type who would 'forget' to tell anybody what the dr said because she simply doesn't want anyone to worry, wants us to enjoy every day and have quality every day of our life. It's difficult when you fear losing someone you love. I would also suggest you attend with him as you've already said you will. But more than that I wonder if you are attending a support group of any kind? I have found that to be a really tremendous help. It's very insightful and informative to hear other peoples stories and get advice from others, the ones fighting the battle and the caregivers and family members. I would highly recommend that. Best of luck to you and your husband. You will remain in my thoughts and prayers.
    Janet
  • cbcardb12
    cbcardb12 Member Posts: 84
    #9
    Janet3 said:

    Great job.
    Well, I don't have to tell you what a tough job being a caregiver to a loved one is. I'm caring for my mom who was diagnosed 30JUNE09 with Stage IV - she's 61. I go with her to all appointments and treatments. She is the type who would 'forget' to tell anybody what the dr said because she simply doesn't want anyone to worry, wants us to enjoy every day and have quality every day of our life. It's difficult when you fear losing someone you love. I would also suggest you attend with him as you've already said you will. But more than that I wonder if you are attending a support group of any kind? I have found that to be a really tremendous help. It's very insightful and informative to hear other peoples stories and get advice from others, the ones fighting the battle and the caregivers and family members. I would highly recommend that. Best of luck to you and your husband. You will remain in my thoughts and prayers.
    Janet

    My Dr Said the same thing.
    I will turn 50 on 11/3, so I have started my physicals, including colonoscopy. Anyway, today I went for my regular physical and my dr told me something that was really eye opening: after telling him about the last year, finishing school, losing my father in 8/08 and then my husband's dx, and told him that there are times when I need my friends to be there for me as I have been for them. He said that in a lot of people's minds I am now tainted. I have a love one that is facing life & death and that is too real for most people. Now, last year, before all this happened, I talked to him about getting a prescription for an anti-depressant or something to take the edge off. Well, at the time he said no, that I was probably one of the most stable people he knows and didn't feel like I needed that. Well, he says, he realized that he was going by my outward appearance and that if I felt I needed it he would write a prescription. He also said to think about talking to a support group or someone paid to listen to me. Someone trained to make it possible for me to get things out in the open, the things that I can't talk to my family about, and that my friend don't want to hear. He's given me a couple of names, and my employer has an EAP (Employee Assistance Program) where I can talk to couselors and such for minimum money. I think I need that...badly

    God Bless,

    Carolyn
  • Unknown
    Unknown
    #10
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