JoniRobertWilson Posted May 24, 2004 Share Posted May 24, 2004 I'm sitting here, wondering if I have the strength to fight this one more day. My husband (41) is suffering from SCLC. He had to have fluid drained out of his body Thursday ( 2 1/2 liters) and it appears that the fluid has returned again. He is in severe pain tonight. We have an appt with the doctor tomorrow a.m.. He's suppose to have his chemo Mon/Tues/Wed. I just keep thinking, we had this great life before 3/17/04. We didn't think we took anything for granted but trust me we did. Even the little things, like getting to sleep together in the same bed, him taking out the trash and empyting the litter box. We have a great 8 year old son who looks just like me but is just like his dad and he needs him to be well. I would rather me go through this than my husband. I'd take it ten times harder if he just didn't have to go through this. I rarely cry in front of him because he has enough to deal with so I'm unloading on a faceless crowd with hearts of gold, who I know understand. We have a big Faith in God which I know allows me to get up and start each day. This a.m. it was so hard ot even get up because I knew the day would be long and I had so much to do that I didn't even want to start. If I just knew everything would turn out all right I know I could see this through but we don't have those guarantees do we? I just want it to be ok. I read your postings and you all seem so upbeat...sorry I'm a downer tonight but I feel hopeless and that scares me. We get the pathology from the fluid tomorrow. I hope and pray that there is no sign of cancer in the fluid. Good night. Quote Link to comment Share on other sites More sharing options...
Margaret Posted May 24, 2004 Share Posted May 24, 2004 Hi, Your faith will provide the strength for yet another day...the love for your husband and son will give you strength. There can be good times ahead and now you know to appreciate each moment. Come with your tears, your fears, your hopes and you will find support. I pray that your morning will be better than your night. Margaret Quote Link to comment Share on other sites More sharing options...
tess Posted May 24, 2004 Share Posted May 24, 2004 It is so hard to see our husbands (or wives) go thru this horrible disease. It does make me wish there was more I could do for him. He says I do plenty, but I don't feel like I am sometimes. All the emotions that go with this are wearing me out too. I am so sad you have such a young son to go thru this too. We don't have any kids,(my second marriage and his 1st) I have grandkids who are here a lot (5 & 7). They love grandpa and sometimes don't know what to say to him. He just assures them he loves them and they love him too. I just wish we all could just wake up from the nightmare and say, "It was only a bad dream." Unfortunately we can't. Somehow God gives us the strength to go on...... and on ...... and on.... You are not alone.. We are all here for each other. Take care, Tess Quote Link to comment Share on other sites More sharing options...
ginnyde Posted May 24, 2004 Share Posted May 24, 2004 Joni, My husband has been dx'd over 20 months now. Fortunately our children are grown, it must be very, very difficult to deal with this with a small child. This disease is a roller coaster ride emotionally. There are good days and bad days and, like you, I have unbelievable frustration that I can't do anything to make my sweetheart better. You take life one day, sometimes one hour, at a time. Try to live as normally as possible. Laughter is a requirement. Make sure to take time for yourself, you have to keep yourself physically and mentally healthy. I hope you get good news this morning. Ginny Quote Link to comment Share on other sites More sharing options...
Ry Posted May 24, 2004 Share Posted May 24, 2004 Joni, It's hard, no getting around it. We may all seem upbeat but trust me that's not always the case. There are major ups and downs and sometimes I really have to fight like hell to get myself out of those deep places no one should be. I've been doing this for almost 2 years and have finally decided to make an appointment for anti-depressents. Now I could just strangle one of my in-laws and probably get the same result but I think I better go for the meds. We have 3 kids at home and I think that helps keep us focused and our minds off the cancer. Hang in there Joni, we've all been there, just let out anything you want. Rochelle Quote Link to comment Share on other sites More sharing options...
Elaine Posted May 24, 2004 Share Posted May 24, 2004 Joni Joni, I cant really understand how it must be to be the caregiver as I am the patient. But I do think I know how it feels to not believe I have the strength to face it another day. Several weeks ago, I stopped posting because I felt so hopeless and everyone else on the board seem so full of hope and upbeat. I felt unworthy of being here. But I came to accept that if we on the board are truly family, then we will accept each of us in each's own individuality and each of us no matter what spot on the road we are on. I am praying for you both. Elaine Quote Link to comment Share on other sites More sharing options...
Snowflake Posted May 24, 2004 Share Posted May 24, 2004 If I just knew everything would turn out all right I know I could see this through but we don't have those guarantees do we? I just want it to be ok. Joni, There are no guarantees and we all feel hopeless at some time or another. Besides, if you knew it would all turn out right, maybe you wouldn't be so vigilant on the treatments....and you'd stop looking both ways when you cross the street, just taunting that beer truck! Don't wish yourself on the other side of the fence. The road over here is different, but not easier. I'm "The Mom" and I'm the patient - my boy is 12...and there are issues over here, as well. I can understand the frustration with not being able to "fix" what is wrong (I'm "The Mom", the Superwoman who should be able to fix all, mend boo-boo's, etc.) and the EXTREME frustration with not knowing the future. Just take it one day at a time, it's not over until it's over. There are new medical advances, new treatments, minor and major miracles...don't despair. (....and if it really IS getting to be too much, talk to your doctor about possible medication and/or counselling - it helps.) Geez, it sucks to be "normal"! Remember that you are not crazy and life really IS upside down... Take care, Becky Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted May 24, 2004 Share Posted May 24, 2004 Joni, I think the most important thing to do is to have good days. The fog gets thicker the further we look into the future. A couple of years ago I thought I would know what our lives would be like in ten years, except I was wrong in basically every way. Today, I have no clue what life will be like next year, let alone more than that. We have little control over how many days we have left. We should exercise that control we have - please look both ways - but then all we can do is maximize the brief flicker of time we have. One of the things I told Becky all of the time was how lucky I was and we were. There was literally only one thing wrong in our lives, and now only one thing wrong in my life. But I have a beautiful daughter, some measure of financial security, a supportive system of family and friends. Even as Becky finished living with this disease, we were able to enjoy each other and have good days. Keep the focus small and on the short term. Good luck, and keep in touch. And while we are upbeat on this site for the most part, we have all cried and cried. We have all raged at the cursed fates, and we have all leaned on each other. There is nothing you are going to do that we haven't and wouldn't understand. I know that I have posted when I was at my worst and most stricken and also when I am most upbeat. Becky did the same. So do not be afraid to share any of what you are feeling. Curtis Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 30, 2004 Share Posted May 30, 2004 Joni, you are very normal. We all have down times. It is good to express it here. We caregivers are not superhuman -- we are human. We have to be sure we are taking care of ourselves so we can take care of the patient as well. I have said it is a three ring circus for the caregiver -- we do what we normally do, we do what our spouse normall does and we most of all take care of the patient. It wears us out. I have had screaming times along the way, just to get the tension out. I think we have to show some emotion to our spouses to let them know we are real, because they know we are undergoing a lot. There have been times when I thought I couldn't go on, but my faith and the support of many have given me the will to go on. It is so hard to watch the person we love the most sturggle so. And we have to be strong so they can lean on us when they need it. However, we need to reach out to family and friends and let them help us. Otherwise, we can "go down the tubes" as well and not be good for anyone. Hang in there -- you are in good company. I have felt the tremendous struggle has shown me I'm much more capable of coping than I thought, and Lucie and I have drawn so much closer together -- something we thought not possible. I believe trials are to test us and show us with God's help that we can meet the challenges. There is more in us than we give credit for. And there is so much in true friends who reach out to help us. There are many right here on this board even though we have never met. Blessings. Don Quote Link to comment Share on other sites More sharing options...
IIIp0 Posted May 31, 2004 Share Posted May 31, 2004 Hello Joni - My name is Beth, and my husband has extensive small cell cancer and believe-you-me, I do so understand how you must be feeling right now. Some days really ARE much harder than others and that's just the way that is. I've come to accept it, and to allow that to be "OK". I was just telling a friend today that I find it particularly difficult to just "cry" the way I'd like to but I've got no where to go! I can't cry in front of my husband, or our daughter, or at work, or to family. So I have to find ways to "get away" even if it's pulling over somewhere for a few moments. I do though, so try to look on the bright side of all of this; and for you I suspect it's easier to do were it not for your eight-year old. But the reality is that no matter WHAT the scenario, the situation or the particulars for any of us -- we are all only guaranteed the same amount of time here, and that is today. That's it. And for anything else, our job is to continue to find the gratitude, and hope, ya know? That we'll each see another day, and to be thankful for these 24-hours. Believe me, there are so many times when I'm 'not there', either. Something someone told me today, is that the "gift" in all of this, is that my OWN daughter of 17, though she's in her own world most days, it's true -- is learning from ME "how" to get through these tough times. And that helps me to stay focused; to watch my own anxiety and words, and to remember that I have to be the example -- and together, we're all going to walk through this no matter what the outcome. The greatest thing I have to be careful of, is to not "project", "anticipate" or get tooo ahead of myself because if I do -- then I'm already trying to PLAN for an outcome I have no control over and could be totally way off base. Hang tough my friend, we're all with you~~ and miracles really ARE made every single day. I know cause I 'see' them, and hear about them right here in these rooms! Big Hugs - Beth ============= husband diag. 12/03 w/Extensive SCLC mets to bones, liver femur 13 sessions of carbo/taxol; neuropathy switched to CPT-11 blood transfusions, have to wait... Spine and Whole brain radiation starting next Tuesday. Praying and looking for those miracles~ Quote Link to comment Share on other sites More sharing options...
MommaL Posted June 2, 2004 Share Posted June 2, 2004 Joni, It is hard to keep upbeat when your husband is having such a hard time right now. Like others, I have been up and down and the downs are really low when they strike. I often think it would be easier if it was me too, in that, it is much harder to see your loved one feeling so sick. My husband's fluid retention has not been as bad as your husband's but right now, he is in bed, and the fluid retention is making it difficult for him to move. He has gone through this before and for him, it usually means more bed rest and lots of gatorade. Please keep us posted on the results. I am here for you...... Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.