Sometimes I just need.....
In November of 2015 my husband of 21 years finally decided it was time to go to the doctors. He should have gone five years earlier. It was on a Sunday so to the emergency room we went.
A CT scan showed a baseball sized tumor just above his colon. His red blood cell count was so low its a miracle he made it to the hospital. He had to have emergency surgery for a colostomy. He had to get a nephrostomy because the tumor had in effect pinched off the tube from his kidney to his bladder. In the hospital about three weeks total because of two perforations in his bowel made by the tumor that were hidden. He looked like a walking skeleton. They didn
t feed him because he wasnt pooping. They finally located the problem and he was in for another emergency surgery. He came out of that with a 25% chance to live. We called the family in. After seeing his children and grandchildren he did an about face and started fighting to recover.
It is terminal, stage 4, liver full of tumors, its in his lymph system.
He has completed 8 rounds of infusion therapy. Platelets kept dropping, bone marrow biopsy, found CLL. Now its a balancing act to deal with the colon cancer and the CLL. My husband is dieing. Not a matter of if but of when. The only upside is that I know he has a relationship with the LORD and he isnt afraid to die although he does want to be around for a while longer.
I wish I could be his cheerleader....but Im not built that way. Sometimes life just hands you things you just have to deal with. So much has happened in my life that this has become yet another thing we have to get through. Prepare for the worst, hope for the best, and dont jump to conclusions good or bad along the way. A lot of this cancer experience has been wait and see and try not to let your thoughts cause you to use the limited time you have bound up in despair.
I apologize if this sounds selfish. Im pretty tired most of the time. I havent had a break since the day we went to the hospital. My husband isnt the only one who needs care. We have a two year old who needs me as well. I love them both very much.
I just needed to vent. I would delete this if I knew how. It sounds pretty selfish. I just dont dare express my questions at home. My husband doesnt want to know them. Our 19 year old that lives with us cant handle it. Questions like will he die in his sleep? I have to go. I cant really even find time to type this. It took two times.
Thanks again
Comments
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It's okay-in fact I hear
It's okay- I hear where your'e coming from. There comes a point for me where I just want to throw up my hands and say "God, this is really unfair. Yes, I know about eternity and the bigger purpose, but right now, this is how I feel."
For what it's worth, I feel God is okay with us being honest with Him.
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It's not selfish@:GIMD
I don't think venting is selfish. We caregivers have a difficult journey and it seems like we're expected to put on a happy face and shut up about our own feelings. My husband has stage 4 pancreatic cancer and just started Hospice. It's been almost 2 years since his diagnosis, and I'm tired most of the time, emotionally and physically. I love him very much, but he really has no clue about my feelings and what I'm experiencing. I just registered for this site because I finally decided I need to talk to more people who are in my situation. No one in our lives should be making us feel bad for saying this is HARD!
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it is NOT selfish!
Like Bekah, I just signed up so I have somewhere to vent. My 21yo son is in end-stage brain cancer. I am his sole caregiver. My hubby can't deal with it, and my other 2 sons (17 & 19) just don't know what to do or say. I also get so tired and worn out. My other kids need me, my hubby needs me, and this has been going on for over 4 years now, with it getting really bad in just the last year. Recently I asked for a friend to arrange meal delivery for us, just 1x per week for now, knowing that as he gets worse I will be upping the frequency. Just knowing that I don't need to decide & cook dinner that one time is a relief, and I won't wear out my friends with too much too soon. Do what you can, and let other things go. My home is not a showroom, don't like it a little dusty? The supplies are under the sink, knock yourself out. I prioritize what truly matters to me, and to my family, and that's what gets done. Occasionally I do lunch with a friend, or just go windowshopping. It's amazing what an hour or two away will do for my own attitude. It will get worse and the burden will grow as he gets sicker, but for now I focus on building memories with him and assure each of us that we will always have these times to remember fondly!
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Caregiving
Caregiving is hard and you have to take care of yourself too. My husband fought cancer for five years before passing last July. I did everything even though we have 4 grown children but it seems they didn't have the time to help or offer any kind of help but they all had time for their vacations and families which always made me mad and now I have 2 that are suffering for the way they treated their father. My husband was very grateful for everything I did. He used to tell the doctors and nurses that if it wasn't for me, he would have already died. Now I'm not saying I didn't get mad at him and scream because I did. Thankfully he did well on in-home hospice for almost 2 years and they were great. I always tried to get away for an hour or two a week even if it was just grocery shopping. As his end drew near I never wanted to leave and I am thankful that when he went downhill he went fast. Yes he was afraid and so was I and I still am now. I have regrets for the way I would get mad but I always told him that I loved him, that I wasn't mad at him that I was mad at the situation.
Venting is good, getting mad is good too but taking care of yourself is very important and you must remember to do that. I remember asking my doctor for something for my nerves during the last year because I wasn't sleeping and was depressed over the situation. Men don't really like to talk about their health problems. Mine didn't not even with me and I would have to tell the hospice nurses the truth because he would lie about how he was feeling, his pain level, his food intake, etc. I remember one time at the end he told me he was afraid and I told him I was too but that we never know if we will wake up in the morning and that is how I wanted to go.
Wishing you peace and comfort
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Not selfish at all
I just joined this site on a recommendation from a friend who explained I was going through caregiver syndrome,as I'm ready to snap on any given day.
One year ago we sold our house in NJ and moved to SWFL, 1300 long miles from family and life long friends. I didn't want to move here, not a big FL fan, but my husbands dream was to live here on a canal, buy a boat so I gave in.
In late January, 6 months after moving here he was diagnosed with stage 4 renal cancer with mets to hip, liver,lungs and brain. It's been awful, first medical care here is not like what I was used to in NJ. After getting frustrated I took him to Moffitt Cancer in Tampa, a 130 mile one way trip. Then the awful costs and co pays for his chemo sent me into a tailspin. On the recommendation of same friend I asked for an oncology consult at VA as he is a veteran. I'm pleased with them and my co pays have drastically dropped. They also have a clinic here in Cape Coral so for CT scans etc I don't have to schelp to St Petersburg which is also about 130 miles one way.
My issue is I have no one to talk to face to face, all our family and friends are back in NJ and I just get over whelmed at times. Sometimes at night I'llpour a glass of wine sit on the lanai and just cry.
We have no social life and doubtful we ever will as we don't get out much to even meet people.
I only wish it reared it's ugly head before we moved as instead of watching him sleep all day I would at least be able to slip out once in awile and meet a friend for lunch or visit my grand kids.
Now while he sleeps I binge TV on Netflix, real exciting...lol
I guess my point is we need to vent and what better place then here where the people reading will have an understanding.
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Caregiving IS Hardnjkate07 said:Not selfish at all
I just joined this site on a recommendation from a friend who explained I was going through caregiver syndrome,as I'm ready to snap on any given day.
One year ago we sold our house in NJ and moved to SWFL, 1300 long miles from family and life long friends. I didn't want to move here, not a big FL fan, but my husbands dream was to live here on a canal, buy a boat so I gave in.
In late January, 6 months after moving here he was diagnosed with stage 4 renal cancer with mets to hip, liver,lungs and brain. It's been awful, first medical care here is not like what I was used to in NJ. After getting frustrated I took him to Moffitt Cancer in Tampa, a 130 mile one way trip. Then the awful costs and co pays for his chemo sent me into a tailspin. On the recommendation of same friend I asked for an oncology consult at VA as he is a veteran. I'm pleased with them and my co pays have drastically dropped. They also have a clinic here in Cape Coral so for CT scans etc I don't have to schelp to St Petersburg which is also about 130 miles one way.
My issue is I have no one to talk to face to face, all our family and friends are back in NJ and I just get over whelmed at times. Sometimes at night I'llpour a glass of wine sit on the lanai and just cry.
We have no social life and doubtful we ever will as we don't get out much to even meet people.
I only wish it reared it's ugly head before we moved as instead of watching him sleep all day I would at least be able to slip out once in awile and meet a friend for lunch or visit my grand kids.
Now while he sleeps I binge TV on Netflix, real exciting...lol
I guess my point is we need to vent and what better place then here where the people reading will have an understanding.
I just found this place and I am glad that I did. I need to hear that other people are going through the same things that I am going through. My husband was diagnosed with multiple myeloma two and a half years ago. Caregiving has become the major part of my life although I am also trying to work fulltime (we need my insurance!) and take care of our 60 acre dream farm which now feels like a nightmare some days. There are so many things that he could do that I just can't. I am tired and overwhelmed.
One thing that has kept me going was a study I looked at when my husband was first diagnosed. It said that more than 50% of the patients who have a stem cell transplant (standard treatment for MM) have post traumatic stress disorder afterward because it is such an arduous process. At the time, I was spending every waking minute researching and so I looked at the study. The part no one was headlining -- 100% of the caregivers who help someone through a stem cell transplant have PTSD. So, this IS hard.
Watching my husband suffer is hard. Being responsible for everything is hard. He leans on me to know about treatments, dole out pills, research what to do next, take care of the house, the farm, the family, the cars, the dogs -- you name it and it is my job. For me, the worst of all thing is having to constantly be a source of comfort to others -- the coworkers who want to insist that this will end well, the friends who tell me this is God's will or that this will go away if I pray harder (Like don't you think I've prayed as hard as I can alraedy!?). I get tired of pretending it's going to be okay when I know it is not going to be.
njkate07, you might try to see if their is a caregivers support group meeting in your area. It might be a way to get some human connection.
WV_Farmgirl
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Chat Roomjorola said:try the chat room most nights between 8 and 10 pm mountain time
we are there chatting, survivors and caregivers. sometimes about cancer and treatment and sometimes about nothing much at all. We laugh we cry we listen. come join us
Good to know if ever I'm awake. So tired now I'M usually in bed by 8 Eastern time...lol
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You said "I'm ready to snapnjkate07 said:Not selfish at all
I just joined this site on a recommendation from a friend who explained I was going through caregiver syndrome,as I'm ready to snap on any given day.
One year ago we sold our house in NJ and moved to SWFL, 1300 long miles from family and life long friends. I didn't want to move here, not a big FL fan, but my husbands dream was to live here on a canal, buy a boat so I gave in.
In late January, 6 months after moving here he was diagnosed with stage 4 renal cancer with mets to hip, liver,lungs and brain. It's been awful, first medical care here is not like what I was used to in NJ. After getting frustrated I took him to Moffitt Cancer in Tampa, a 130 mile one way trip. Then the awful costs and co pays for his chemo sent me into a tailspin. On the recommendation of same friend I asked for an oncology consult at VA as he is a veteran. I'm pleased with them and my co pays have drastically dropped. They also have a clinic here in Cape Coral so for CT scans etc I don't have to schelp to St Petersburg which is also about 130 miles one way.
My issue is I have no one to talk to face to face, all our family and friends are back in NJ and I just get over whelmed at times. Sometimes at night I'llpour a glass of wine sit on the lanai and just cry.
We have no social life and doubtful we ever will as we don't get out much to even meet people.
I only wish it reared it's ugly head before we moved as instead of watching him sleep all day I would at least be able to slip out once in awile and meet a friend for lunch or visit my grand kids.
Now while he sleeps I binge TV on Netflix, real exciting...lol
I guess my point is we need to vent and what better place then here where the people reading will have an understanding.
You said "I'm ready to snap on any given day." and that's exactly where I am right now. That's why I'm here. I reached out looking for others in the same position and found myself here. I don't have time for along post since I've been up almost 23 hours, but I'm consistently going through moments of happy to sad, depressed, terrified and even angry. And when I realize I'm getting angry, it just makes me even angrier... mad that I'm doing so much, mad that no one seems to want to help the way I need them to, mad that I'm in very real danger of losing my mom and my best friend, mad that the things that happened have happened to lengthen this battle that should have been over already.
Falling asleep at the keyboard and still have a few more things to do before bed. Will definitely be back with more since I found the blog area. I'm a writer in one of my jobs, and I know that will be a great way to express not only everything going on, but how I'm feeling along the way. Looking forward to chatting with all of you more in the future.
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My husband was diagnosed with
My husband was diagnosed with Stage IV adenocarcinoma of the lung, with mets to the brain, spine and shoulder, in May, 2016. Our Primary Care Physician saw the original mass on a CT scan in 2014, but didn't encourage us to pursue it further as "it is the size of a grain of rice, and in a difficult spot". The radiologists at the hospital were looking at "old" films, and called us to see what treatments had taken place. Needless to say, we were shocked. It is just me to care for him, and I am overwhelmed. I have depression that is now out of control and there isn't anyone around to help me care for my husband. I feel completely consumed by him and his disease. I am ashamed to say it and feel it. I don't really know what to do.
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Am reading more and more
Am reading more and more comments, and you all are describing exactly what I am going thru. The fear, the anger, the finances, having to become a nurse......some days I just can't stop crying. I have been hesitant to reach out to a support group as I didn't want people to think I was a whiner or that I couldn't care for my husband. We live in the woods, with no social life and no family. I am so scared at time that I cannot breathe.
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Here's the thing
You ARE breathing and you will continue to do so. Take a deep breathe and then exhale.
Some days are harder than others and some nights seem impossible. Your fears and worries and what-ifs and whys can really get the best of you.
There is a chat room associated with this site and someone is on it most of the time. Try journaling. It can be very beneficial.
If there is a church near you, whether you attend or not, call the office and ask for a visit by the minister or the church staff.Get some different people in and out of the house. Call friends and neighbors and anyone who might come for a brief visit. Call the Avon lady! If your husband qualifies for home health have them come even if you think there is nothing for them to do.
When you are isolated you lose your perspective. That's not good ever.
You need to own this thing. Alinore, instead of letting it own you. This may not happen all at once but it WILL happen.
Lots of hugs.
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Yes. Care giving is hard
It is such a relief to hear other people's experience of care taking. I am feeling exhausted, over whelmed and alone. My x husband was diagnosed with stage 4 pancreatic cancer on Christmas eve. My 2 teenaged boys (16 and 19) were with him when the ER doctor came in with the news. We have been divorced for over 10 years, but I am still all he has. I need to take care of him because I can't have my 16 year old carry the burden. My 19 year old is off at college, constantly wondering if that was a good idea and worrying. It was what we wanted for him.
Steve had emergency surgery in the beginning of April for a bowel obstruction and complications from that. He wasn't supposed to make it through surgery, but he did and evnetually recovered fully. Although the amount of care the 3 of us had to give was off the charts. I know you all understand. We had a little reprieve with the liver tumors shriking and the pancreatic tumor staying pretty much the same. However, 3 weeks ago he got a bile duct obstruction and we are back on the roller coaster. ER. Hospital stays, procedures....tests. And he wants me to be with him as his advocate. I am tired. I don't have a significant other and get home and have no support. You can only talk so much with friends and frankly, no one I know has had to deal with anything remotely like this. In addition, I lost my cloest friend to breast cancer in August. Diagnosed on June 5th and gone by August 23rd. I was there for all her stuff too. Wow. I am really telling my story here.
I am tired and I bring him to all his appointments. I am constantly worried about him and my boys. I wake up and wonder what will happen that day. I have stopped taking care of myself and frankly, too tired to even figure out how to jump start what I need to do.
Thank you all for listening. I needed to get this out. I try to be upbeat and present for my friends, but I have nothing left to give and it's leaving me pretty isolated. I have always been the one to counsel and listen to others and now I can't be and find that the people you think are your friends, many times can't show up.
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