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It's Been Awhile Since......


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I have been here. But right now, I feel at the end of my rope. We have dealt with our sons brain tumor, my broken leg, my life support, a hip replacement, a recent knee replacement.....and now we found out my husband of almost 45 years has Lymphoma. When they told us, it was like my whole world spun out of control. Thankfully, it is so far only in three tumors beneath his left ear. They have found none throughout the rest of his body. When we pulled up at the Cancer Center for a PET scan, I felt like screaming.

He also has a very bad cold and now has been in bed for days. He has surgery next Tuesday.

I am doing my best to cope. Of course, there were a few calls when people found out but I'm on my own with God and Jesus to care for him, the house and our sparse finances. My son and his wife have been of no help whatsoever but I know my son.....His Dad is his best friend. My DIL couldn't care less. But our son is hurting so badly, he has started drinking. I explained how that saddens me so much but only he can use his common sense.

I feel so alone and refuse to call anyone. If they wanted to help, they would call or come over. When my sweet son posted on a social media site his pain over his Dad, he was told he was feeling sorry for himself and other people had worse problems.

Life seems so different to me. I have no one to talk to. I did talk to my sister 5 hours away and all I got was, "I'm so sorry you are going through so much but I have to run now". Maybe it's because they know bad things can happen to them and they don't want to think about it. Or maybe they are afraid if they get too close it will happen to them.

You find out who your family and friends are. I don't have any. I just ask for God's love and blessings and pray he sends his blessings. I have to get my husband to the hospital next Tuesday during a scary 45 minutes drive all congested Interstate with the terrible hip and knee pain I still have......but there is only me to do it and I will.

But I have no more tears. I usually go to my best friend.....my husband. But I can't now. HE needs ME. I will try to be as strong as I can.....and I will call no one.

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Dear Hoping,

I just finished reading your story. You seem to be going through so much right now. How is your son doing? You only mentioned that he has a brain tumor. Was there surgery? It sounds like your husband’s recent diagnosis of lymphoma was caught in time. My prayers will be for him on Tuesday.

I am sorry that people are not stepping up to help you. Sometimes we have to come right out and ask someone for what we need. They might want to help but don’t know how to ask. Others say things that can really hurt like the remarks made by people on social media.

You have said that you have been here before so you know what a caring place this is ~ there are people here who listen.

My thoughts and prayers will be with you as you once again go through yet another painful health issue.

Anne

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Hoping,

I am sorry you are going through so much, it must be very frightening to you, and yet you are trying to hold up, to be strong. I hope your son understands that drinking is a depressant...not what he needs right now. I am also wondering how he is doing physically right now. Do your son and DIL live nearby? Is there no one to drive you and your husband to surgery? A pastor, neighbor, your son? I know it's hard to ask for help, especially when people haven't stepped up to the plate, but this might just be the time to make an exception and dog them until they provide help. Sometimes people say stupid things, not knowing how to respond, we have to tell them what we need. I recently had surgery and no one helped me, I chewed my kids out afterwards for not having been there for me and told them if there is a next time, I will need to stay with one of them and have them take care of me for a week or so afterwards. What seems obvious to us apparently isn't to others.

I'm sorry people were so insensitive on Facebook. It's those times I think I would comment back and say, "No, I have all good reason to hurt...it's my dad".

I'm glad you are able to express yourself here, it's important to at least know someone hears you and gets it...I just wish we lived nearby so we could be of some physical help to you. Are you in the East where there's inclement weather right now?

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My son has a neurostimulator implanted on top of his brain that has stopped his seizures so far. He is 38 years old and ou only child. He knows he is not suppose to be drinking because of his medical condition but his Father's recent diagnosis has sent him completely reeling. My husband is blissfully unaware of the medical world but I have lived it a long time. His dr. is very nice and downplayed it but I was dying inside. He has surgery to remove three tumors under his left ear, one a bit larger then the other 2. The may remove only the larger one to see what kind of Lymphoma is is and what stage it is. A PET scan showed no other cancer in his body at this time.

For over 15 years, I had to move mountains (Actually, God moved then) to get help for my son. I had a nervous breakdown and then all my other health problems. I still have a great deal of pain from y hip and knee replacements. My husband came out one morning and said, "Honey, I found this lump when I was putting shaving cream on". The first ENT said it was benign from an FNA and surgery was scheduled. But then he retired and the newer dr. questioned. After 8 days of agonizing waiting, they called and said it was Lymphoma. The dr told me they would probably just inject the tumors, they would melt away and my husband would live to a very old age. He is 65 years old.

I said nothing but I know it's not that easy. The dr. said some Lymphoma is almost not considered cancer because it's so easily treated.

I said nothing to my husband but I see the big picture here. I don't think it's going to be that easy but I will say nothing to my husband.

Again, it feels like my whole world has imploded. I have talked to a few friends and neighbors but "they have to work". I'm on my own with God. I love my husband SO much and I always dreaded the day this healthy man would get sick. He has always been there for me. I don't want to upset my son any more then he is. He's already having trouble at work because he can't concentrate at work. He says he just drinks before he goes to bed to "take the edge off". If I try to address that, he gets too upset. I am a mess.

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Perhaps the doctor could give your son something to take the edge off that wouldn't be so hurtful to him? I understand wanting to take the edge off...but that's what doctors are for, to give us something safe when it's needed.

You have certainly had your plate full, I wish I could say something to help you, but I don't know what. I only know we're here, we're listening, and we'll walk this journey with you. Let's hope and pray the doctors can indeed get it all and you and your husband can have years left together. My husband was barely 51 when he died...that was nearly ten years ago...I understand wanting to grow old together, that's what I'd always wanted too, so that is what my hope and prayer for you two is.

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Dear Hoping,

I shall try this again. I'm not sure what I did, but my post "took off" on me. I didn't hit Post. If it takes off on me again, please overlook my mistake.

I am so very sorry that your are hurting, and are so scared. I believe I might understand something of how you are feeling. Please forgive me if I'm overstepping by believing so. I realize that no two people feel the same, and we have different situations. You have lived through so much already, and still have much ahead of you. You do have hope, as your "handle" here states. I have not lived what you are living, but I have lived through being told that my husband was going to die due to an inoperable aneurysm, which made him go into complete liver failure. We were given no hope. He did not die, but we are still told by the doctors that they are amazed that he still lives. He lives only on his hepatic vein. A few months after we left the hospital, a cardiologist friend reached out and hugged him, pounded him on the back several times, and said, "You're not supposed to be here, you know." You'd think this would be an isolated incident, but the doctors think he is so strong that he doesn't mind. Jerry just tells them, "God gave me a miracle," and smiles at them. As for me, I know they mean no harm, but my wife-heart would sort of like to kick them in the shins enough to "subtly" give them a hint. Jerry has not complained, even to me, about such insensitive statements.

My family on the West Coast (CA) consists of only my husband, daughter, and me. Jerry was in the hospital in a city where we know few people, and had no close friends nearby. There were gang members causing destruction to cars on the hospital parking lot, because one of their members had been shot, and was in the hospital. They roamed the corridors, and filled the waiting rooms. Our daughter, Amberly, works an hour and a half away from the hospital, and she worked nights at the time. Thankfully, God gave me a wonderful social worker, and many supportive hospital staff. Like you, I had few people, but I learned that "God and Jesus" were enough. Had it not been for a towel, I might have gotten rug burns from the motel room carpet on my forehead. I felt alone in my valley, but God met me there more powerfully than He ever had before. I believe He will be there for you also. I am in Anticipatory Grief, as are you.

Our nightmare began when Jerry got a nosebleed one morning that I could not get stopped. I have Meniere's Disease, so I don't drive. I called a neighbor, my friend, to ask her to help me get him to the hospital. She said, "Oh, my God, Carrie! I have a meeting!" She was meeting with a group of her sorority friends. Jerry is on Coumadin (blood thinner), and has aneurysms. He was in danger, but we didn't realize that his nosebleed was due to his having no clotting factors due to liver failure. It took a while before I could forgive my friend for not taking Jerry to the hospital. We never talked about it. Jerry and I went for a visit after he was home. She gave him several hugs, and told him that he had really given her family and her a scare. All right then. I made a conscious decision to forgive her; still, it took a bit of time.

I agree with those who have advised you to come right out and ask for whatever your needs are. I learned that one when Jerry was in the hospital. I know now to not become angry with people for not helping me, unless I ask for help and they refuse. Some people just don't know what to do, and others are afraid you will ask them for help. I think you should accept the help, even if they give it reluctantly. Sometimes we find ourselves in situations in which we must get our needs met, even if the person helping is reluctant. You might want to request a meeting with the hospital social worker. I didn't know to ask, but she had been watching me from the nurses' station. I truly believe God gives us people when we need them most. He gave me that social worker, and He led me here to this warm and caring forum. You asked for His blessings, and He led you here. You asked for God's love. You already have His love. We all have His love, even before we learn to love Him back. May He hold you tenderly underneath His "wings" until this crisis has passed.

You and your husband have been married almost as long as have Jerry and I. We will have been married 47 years on April 26. Losing him seems unbearable. This feeing I understand. It's like waiting for the "other shoe to drop," while praying it won't be today, and not soon. The uncertainty---the unknowns---are so hard to live with on a daily basis. I realize that I might die before Jerry dies. He has lived almost two years after his last surgery, after we were not given hope. I spoke with a psychiatrist after Jerry's first aneurysm surgery (15 Feb 2002), and after I my weight dropped to 99 pounds without effort (I "melted). I believed I might lose my mind if Jerry died. The doctor teasingly asked, "So, this is planned insanity?" I said, "Yes." I made arrangements with him for grief counseling should I need it. He told me that he can't do my grieving for me, but he can help me function. That will do, for I can't expect more. Jerry and I both saw him a few times together, and plan to see him sometime within the next few months. We both like him a lot.

Your statement "I usually go to my best friend. . . my husband. But I can't now . . . . HE needs ME," I can 100% understand, as do most on this forum. Yes, your husband does need you. As I read between the lines, I sense that you are a strong person, as am I (but sometimes I feel more like a child who needs a lap). You will be there for your husband now, and perhaps soon, he will be there again for you. We will pray so. Please remember that even strong people cry. Tears are good. That's why God gave tear ducts to you.

I will add you and your husband to Jerry's and my prayer list, and we will remember you especially on Tuesday. You will find the care and support you are looking for here. You have come to the right place, for we open our hearts and our arms to you.

Blessings and many long hugs,

Carrie

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Dear Hoping,

Just a note to tell you that I'm thinking of you this morning, and I now ask our Heanenly Father to hold you, to uplift you, and to meet all your needs today. I send you a warm hug.

Carrie

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Thank you all so much. I always knew people I helped would not be there for me. When I broke my leg badly, my poor husband was so stressed about losing his job, no money and my not going back to work he became furious with me. He was out of town and didn't come home for 3 days. I was in the hospital 3 days alone then he came home, still furious with me. He took care of me but he was so tired. He had to work so I was home, confined to bed. I asked a neighbor twice for help to let my dogs out. She let me know it was a bother the first time and the second time she said they were sleeping and my husband would be home soon. I was SO hurt and never asked for help again. I had to crawl on my left side and scoot down stairs to let them out then scoot on my left side up 2 steps all the way back to bed to let them out. I never asked her for help again and she never offered. I had done so much for her in the past and it was a horrible feeling to know she didn't care. She knows we need her now but I REFUSE to ask.

Then all the other things happened and I had only my husband. He is fiercely independent and gets upset if I ask him if we could ask anyone to help us get to the hospital Tuesday. He feels it's my turn to do my part and I am MORE then wiling to help him. But I am partially disabled and walking is so hard and so painful. The drive there and back is SO scary. Our son was going to take a day off to take us and my husband said no, I would do it. I will.

When I found out he had Lymphoma, I made it to the backyard and silently screamed because I really don't know how much more I can mentally or physically take. I am not as emotionally strong as my husband. And I know he has a lot of unspoken anger toward me for all my health problems. He has essentially been my caregiver.

When my parents needed me, I'm ashamed to say I acted just like my son and his wife are acting. But my Mother called constantly berating me for not being there, telling people how my sister cared and I didn't and, when I was around her, it was constant anger and insults from her. I admit, I ran the other way. This is why I haven't said a word to my son and his wife. I want them to help us because they want to....and they don't want to. To make matters worse, my husband defends them. He has always paved the way for my son in life and gets mad if I ask him if we can ask them for help. He said we don't need any help. that I can do it. My husband has always seen me as a weak person and said now it's time for me to step up to the plate. He's right. But that doesn't make it any less scary for me.

I've even gone so far as to ask God to take me in my sleep to relieve this awful emotional and physical pain. I know that was wrong. When I had my near death experience and was on life support for 5 days, I remember walking up a flight of beautiful stairs. I looked down and saw my dr. standing over my hospital bed and 3 others with him. I was in the bed with a yellow light around me with a small white light. I remember thinking, "I must be dying". I kept walking up those beautiful stairs to a white wall. The next thing I remember was waking up in the ICU and feeling so disappointed I had not been able to finish my walk up those stairs.

My only hope is maybe talking to a social worker if my husband gets sicker. Right now, they can find no cancer in any other part of his body. He fully intends to recover and I think he will because he is so strong willed.

But I'm so emotionally tired. And scared. Not knowing which way to turn. No one has called and I'm calling no one.

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Dear Hoping,

I am so very sorry all of this is happening to you. I am not qualified to advise you, but I can tell you I care very much. This is a place where you can talk with us and say whatever you feel like saying, and without judgment. We will wrap our arms around you, and will love you through it. I can't really even imagine what you are going through. Bless your heart. Were I near, I would come to help you.

Warm hugs,

Carrie

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Hoping,

I am so sorry that is the treatment you received from your neighbor. And I'm sorry your husband holds anger toward you for something you can't help. And expects more out of you than you are able to give. Do you have a church that could step up to the plate? People can't help if they don't know you need it and unfortunately, some people are obtuse and need hit over the head with it, you have to be very blunt. Not everyone is like your neighbor. Kids can sometimes think their parents are self-sufficient and don't need their help, blind to our struggles. They somehow seem to think of us here for them instead of the other way around, and it takes maturing before they realize it's come around full cycle and now we need them. I had to have a talk with both of my kids following my recent surgery as they weren't there for me and I don't have a husband or anyone to rely on. Even my sisters weren't there for me. We have to ask for help when needed, even if we've had a bad experience with it, we can still ask someone else.

I am so sorry you are going through so much. Do you have a friend you can at least talk to? Sometimes it helps just to be understood and cared about...this place has been great with that for me and I know it will for you too.

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Dear Hoping,

Just a note to let you know that you and your family are in my thoughts and prayers today. May God bless you and hold you tenderly. May He give you just the right people for you at the hospital and wherever you have need. The social worker at the hospital was compassionate and helpful to me. Perhaps you should find one to talk with without waiting until later. I'm learning to find resources for help before I need it. Come back and share with us whenever you want to and are ready. We all care.

Blessings and hugs,

Carrie

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