November 17, 2007 at 11:40 pm #17486
Hi Jerry, I loved what you wrote. What a great attitude you have! It sounds like you have been through about every treatment. I think that’s key too, having hobbies and keeping busy. Thanks for your encouragement. Charlie is doing well after surgery. Looking forward to a wonderful Thanksgiving. I wish that for you and your big family too!
CarolNovember 17, 2007 at 11:37 pm #17485
Hi Alison, I hope your Mom is getting along well. Thanks so much for your kind words. Charlie is doing well, just very sore. Love to you.
CarolNovember 17, 2007 at 11:34 pm #17484
Dear Jean, thank you for your prayers. We could feel them. Charlie’s 2 sisters waited with me all day on surgery day. So glad to have them with me. Love will always be here just like you said. You’re a blessing!
CarolNovember 17, 2007 at 11:32 pm #17483
Kris, I’m just now getting back to you. The constipation is a problem, isn’t it? Your pillow idea against the incision is brilliant! You’re exactly right about the surgeons that perform this. We heard from others that the surgeon, Dr. Calvo is exceptional and performs surgeries others won’t touch. He was great. You’ve been so helpful during my dark times. Let us all be here for you during yours. Prayers and Best Wishes!
CarolNovember 9, 2007 at 4:15 am #17482jerry-dMember
I can’t add much to all the posts in support of you and your husband. Certainly they give excellent advice. I too have been through and continue to go through all the challenges you and others have mentioned (I always use the word “challanging” because it is more positive than nasty words used for this challenging condition).
Fortunately my family (wife, four kids and nine grandkids) have been very supportive, but not in an overly emotional way. They avoid letting their emotions get the best of them and they try not to let me get that way also.
I’ve also been fortunate to have a wide range of hobbies which can keep my mind occupied in a positive way. One of those hobbies was all consuming for the first two years — so that I told the oncologist he’d just have to hold up on any bad prognosis he had since my wife could deal with the hobby — which in my case was putting back together a car I was restoring and which was still in 257 jiffy bags with parts scattered all over the house. I knew my wife couldn’t get the car back together so I just concentrated on that for two years, and worked through the surgery and many treatments while inhaling lacquer thinner at the body shop. (Maybe it was the lacquer thinner that scared the tumor growth!)
But, the main think I keep thinking as I face the ever-changing challenges, is that this my life to live the way I want. And I think: do I want to spend the rest of my remaining, days, months or years feeling sorry for my self? I quickly decided the answer was No. Life is too short and I’ve still got too many things to do, so I better get on with it and stop moping about the house. Of course that is easier said than done — especially after a treatments that don’t work or have stopped working.
One other thing someone mentioned — clinical trials. I’ve been on many clinical trials throughout the past six years. Some worked, some didn’t work. But, I’m certain the ones that did work have kept me around. As it turns out I don’t have lots of choices other than most trials because I’m on Medicare and the last time I checked they only approved three drugs for CC. Additionally some of the major medical gap insurances will only cover what Medicare approved. A chilling example is one drug was so successful that I was taken off the trial. But, not unexpectedly, the tumors came back in about three months. But I was ineligible for a trail since I’d been on one, which is normal protocol. Medicare, however, declared the drug, approved for other cancers, could not be approved for me even though it had been working. It was an “Off Label” drug in their nomenclature, so I either had to persuade my secondary insurance to pay for the treatmentsl, or negotiate with the drug company, or pay them myself — which, if I took it for a year, would have cost me $200,00!. Fortunately the insurance ran it past all their medical staff and decided to pay the cost. This experience also showed me the “retail” vs. “wholesale” price of the drug. It would have cost me $12,000 per treatment, but the hospital rate to them was $3,400. I only mention this because in my case, being on Medicare, introduced yet another challenge!
I’m glad to hear your husband is in better spirits now. Keeping a positive attitude is extremely important. Again, easy to say, hard to do, but just as necessary, I think, as all the treatments. Again, do I want to spend the rest of my live being sad? No, I think it is much more fun to be happy and positive. Even when I fake it, I try to convince myself to be positive.
Best of luck, stay positive, and stay busy.
JerryNovember 7, 2007 at 5:58 am #17481malliegParticipant
At times my Mom will become distant…especially when she’s in pain or gets bad news. When this happens I give her space but not before I tell her how I love her and how amazing she is for having to go through this terrible illness. I also try to make things normal for her…by talking/ BSing about everday things….just like I would before she got sick. We can only imagine what goes on in our loved ones minds that are sick. Support, Love, Patients,Kindness, and a sense of humor, seems to work for my Mom.
I hope this helped you. I pray for your husband stays strong as do you.
Today, My Mom had her second external drainage bag attached. Two bags and four internal metal stents…which are not working anymore (metal stents)…she still makes us smile.
Seeing a loved one suffer in pain is the hardest thing anyone can experience. Please stay strong…for your husband will seek your strength and guidance!!
Love and Happiness…AlisonNovember 7, 2007 at 5:25 am #17480seashellerMember
Dear Carol — My thoughts and prayers are with you and Charlie and will be on Thurs. Nov. 8 when he has his surgery. So glad to hear that he seems to be looking on the brighter side as he awaits this day. God bless both of you with strength, comfort for your fears and love in your hearts for one another. Just remember, that love will always be there — the illness has put a strain on it, but it’s there!!!!! God bless! Love & hugs, JeanNovember 2, 2007 at 6:36 pm #17479jeffgMember
Prayers coming your way Charlie and Carol!! Charlie they don’t let ya lay around after surgery anymore. Two days and they had me up walking the halls. Just don’t over due it.
Jeff G.November 2, 2007 at 3:16 pm #17478devoncatParticipant
Just to help you start preparing for Charlies surgery. Not trying to tell you what do to, but thinking that organizing things might take some of the fear away and put you and charlie somewhat in charge.
Remember to bring a pillow to hold against the incision when he coughs. It sounds silly, but it was the one thing that offered relief for me.
Stock up on drinks he likes to help flush all the biliruban and chemicals from his system.
The pain medicine can really make you REALLY constipated. Think about bringing things like coffee and fruits (figs and prunes!) to Charlie when the doctor says its ok. I cannot tell you what they all did to me to help things along and it required 5 extra days in the hospital, so please look out for that so Charlie can get home as soon as possible. I might also suggest books on tape or cd. I was too tired to read, but needed something to do. Little things can mean the world. My mom brushed my teeth for me because i was so drugged and had no coordination-it felt wonderful!
I know surgery seems scary and it is major surgery but in some ways I think that is beneficial. Only the best and most experienced surgeons attempt this so no matter who you have, he is most likely going to be very skilled and experienced-not so with easier surgeries. Keep your chin up and please do something besides wait around the hospital by yourself. It is just too much. Have a friend at the very least-my parents went to a museum for a bit (sounds odd but I think that helped them relieve stress).Best of luck on the surgery and prayers will be said for both you and Charlie.
KrisNovember 2, 2007 at 2:07 pm #17477
Dear Jules, thank you for writing. I’m so sorry about your Dad. I’ve been following your posts and have been so heartsick, I just haven’t known what to say. I hope and pray you’re doing alright. I liked what you said about focusing on simple pleasures and just sitting with Charlie and being there as a comfort. I’m going to remember that.
He is feeling better this week and in a much better state of mind about the upcoming surgery. He has gained some weight, is walking and doing a few things. We’re both dreading and looking forward to the resection if that’s possible. We know it’s going to be rough on him, but it’s a miracle any surgeon even wanted to try this and hopefully will give Charlie a chance to live longer.
Jules, I wish you peace and comfort as you go forward in your life without your precious Dad. What you wrote me was from your heart and most definitely helped!
CarolNovember 2, 2007 at 1:56 pm #17476
Dear Southwind, thank you for sharing your story. I’m so sorry you’re having to go through this too. Charlie has come out of the darkness this week. I think the chemoembolization was so hard on him. He had never experienced anything like that before. Gemzar once a week for 14 weeks was nothing compared to that. He tasted metallic and smelled chemo for 3 full weeks after, no appetite, extreme fatigue and aches. It seems people have different reactions to chemoembolization. Some get along really well and some have a harder time. He was so tired of feeling bad all the time and not able to do anything, it really made him depressed and snappy. I’m so happy to say he’s coming out of that, feels better and is more like himself now. I guess his depression along with mine was just too much for either one of us to see our way out. With our faith in God and so much encouragement from the wonderful people here, we’re both doing much better.
Thank you so much for sharing your point of view. It really helps! Blessings and Best Wishes to you and your family.
CarolNovember 2, 2007 at 8:15 am #17475julesParticipant
I am sorry to hear that your husband is so low. My Dad suffered terribly with depression during his illness and I used to try so hard to lift him out of it – chattering away most of the time about anything and everything, desperately trying to distract him, it was exhausting. He was very bitter and angry and really he had every right to feel that way and he would get snappy with me. Sometimes I would just sit with him and hold his hand and we would curse this disease together, I would tell him that I was sorry, that I would do everything I could to help and that I would be there for him. I tried to focus on simple pleasures. My dad hated the cold – I would light a fire for him, he loved that. We would sit and drink a cup of tea together, watch a favourite TV programme, I would encourage him into the garden if it was a nice day, when my Dad was very low he wasn’t very chatty although he seemed to like me to sit next to him, to just be there.
Carol, I know that this is the hardest time ever for you right now, there is no right or wrong way, we just try to do our best faced with this nightmare situation that is all we can do. I remember once saying to my Dad that I was sorry for always trying to cheer him up, that I recognised that my attitude must leave him very alone with his fears.. that opened him up to talk a little, although I think that he was always thinking of me and only telling me as much as he thought I could cope with. I regret now that he had no outlet for his darkest fears. Is there anyone outside of the family who could talk to your husband?
I don’t know if anything I have written will help you – I just wanted you to know that this is a recognised state of mind with this disease (and any other cancer I suppose) – I would try to look at it that it is the cancer he is mad at not you (if he gets snappy) and try to find an outlet for his fears and to accept that he might not want to talk, that by just being there, sitting with him is a comfort I am sure.
I hope that the surgery goes smoothly for him and that this can give him some hope for the future, as you rightly say a successful resection offers real hope in the fight against this disease, I hope that this will lift his spirits a little.
Thinking of you both,
JulesNovember 1, 2007 at 7:28 pm #17474southwindMember
I’m pretty new to this site and have been reading your posts about your husband. I do wish him succuss with his upcoming surgery. I have a neuroendocrine carcinoma of the liver-numerous tumors, some pretty large, both lobes of the liver involved, so its unresectable. My doctor wants to do chemoembolization, which I’m real hesitant about, but I’m afraid I will have to do it. I was diagnosed 1-07, although the cancer has probably been growing for 20+ years. Like I told my husband, I’m glad I didn’t know about it sooner because I would have just had longer to worry. I was taking Thalidomide, then stopped to participate in a clinical trial (BIG waste of time) and am now back on the thalidomide. It seemed to help before, although the doc said it wasn’t doing much but I sure felt better. Anyway, I guess the real reason I replied to your posts has to do with how difficult this all his for you and your husband. I can relate to his pain and state of mind in some ways, being a patient myself, but I can also see how much pain this is causing you. When I was first diagnosed, I would get pretty weepy at times, although I tried not to let anyone see. My husband has been supportive, although there just isn’t much he can actually do about it. I have 2 grown children, and they kind of go back and forth between being worried and kind of forgetting that Mom just can’t do everything she used to be able to do. I still work, even though some days it takes about everything I have to come in and get things done. I know it’s a bad day when I start counting the hours until I can go home from the time I get here. I made me sad to read that your husband has kind of given up, I hope that feeling won’t last for him. I do know that on days when I don’t feel well, the last thing I want to hear is someone telling me to keep a good positive attitude. I have to bite my tongue to keep from telling them where they can shove their advice. I’ve had a lot of people tell me how well I’m handling this, but there are days when I feel like a whiny little girl, so I’m not sure I’m really handling it all that well. After all, the cancer I have is incurable and inoperable and can only be slowed down and somewhat managed. In many ways, I’m angry, and I think your husband is (or was) also. However it sounds as though the anger has kind of worn him down into resignation. I don’t know exactly how for you to help him through that, but I think the tough love approach is a good way to start. I know I can’t really “beat”this, but I intend on living with it for as long as I can, I don’t ask why me, because there is no answer for that, it just happened and now I have to deal with it. So, anyway, I do hope his surgery is successful and he begins to feel better. I don’t know if this post helped you any, but I guess it’s just another take from a patient’s point of view. Again Best wishes for you and your husband.October 30, 2007 at 1:37 am #17473
Not too heavy at all Jeff. Thank you so much for opening up and sharing this. You have helped me tremendously. You always do and so many others here too. I promise to share it with Charlie soon. He is coming out of his despair a little and this will help when he can hear it. Needs to be a little less defensive I think because then he shuts down and it’s just more heartache for me and the kids. I did have to pull some “tough love” on him when it got so bad. I told him he has a much better chance of beating this or living longer than anyone ever thought because of the resection surgery scheduled for next week and to be thankful for that. Some may say that’s heartless or too much, but I’ve been married to this great guy for 25 years and I think I know him pretty well. We learned about the cc diagnosis on May 29th of this year – our 25th wedding anniversary! Not much of an anniversary, but in July, just out of the blue, he got me 25 pink roses for our anniversary. He says we should celebrate all year. My biggest roadblock and something I need to pray about and change my perspective is how do we move on? How to get over that feeling that you’re in limbo, waiting, waiting. I hope that feeling will fade and be replaced by enjoying each day and living fully in the moment because it doesn’t feel too good living like there’s something bad getting ready to happen. This is something I’ve got to work on.
Your point about not feeling useless is well taken. Charlie mentioned that he was so tired of feeling bad and having so many days of “nothing”. Now that he’s starting to feel better, he’s starting to do things he enjoys.
Prayers from anyone and everyone for Charlie’s surgery on the 8th and recovery are greatly appreciated. Jeff, we’re all in the palm of His hand and He will take care of us! Thank you again for writing.
CarolOctober 29, 2007 at 5:44 pm #17472jeffgMember
Hi Carol, I have been where your husband is at. It is not a good place. It is lonley and very depressing. I just wanted to be left totally alone and have nothing but peace and quiet. I know my odds of beating this disease up front is not good in the long run. I’ve been at the point of feeling so guilty for being so irritable and snappy that I even at one time thought of ways to end the pain. Not my pain but the pain I was causing others, my loved ones! Carol he really doesn’t mean to be the way he is acting but that chemical imbalance of the mind working overtime takes control. It took Months for me to snap out of it. When he understands there is hope and when he can see his life is worth fighting for he’ll dig deep and give it another whirl if you continue to show the love and support. The one thing that brought me around is my wife inviting relatives to visit and getting me to laugh and come out of my shell. Yes I was frustrated at that as well. But I overcame that and started to remember the good times and laughter. It is hell not being in control of your own body and destiny. At least that is what I thought. The bottom line is you do have control over your body and destiny to more extent than you realize. Going back to the little train chugging up the big hill “I know I can Do it!” is the attitude to take and stop feeling useless. I get up and make my wife breakfast before work, doing the laundry and vacum the floors and do the errands she my nort have time to do, make dinner. You will see just how usefull you are charlie! Your to darn young to be throwing in the towel yet! Yes it’s hard but by God and with his help I’m going to do the best I can for as long as I can and if I leave this world I’m going to leave it happy. After all it was a gift to begin with and I want to show my gratitude and see smiling faces when the time comes and I emphasize “when” heck we don’t know. I say all this and make it sound so easy . It isn’t by a long short. I may fall back into that trap of isolation again but I pray not as it is to lonely and sad and creates to much heart ache for those who I love!!! Love!!! Love!!! This come from the heart Charlie with the Lords guidance as I’m not one who shares so opening as this. You can now make a choice and bark at this post or be happy!! I’ve got a 9 year anniversary coming up in March. Nine Years that I thought I would have never been around to see. I’m sorry Carol if this has gotten to heavy . If Charlie is receptive please let him read this . If you think he wouldn’t like it , Heck show him anyways. He is still a man with a heart full of love! Love in his name to you both!!!!!
No , I’m not an every Sunday church going person, but I still read my Bible that I got in my fifth year of Sunday School. Yes I do believe in spite of more obstacles that will probally come my way.
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