Aliboo Posted December 6, 2006 Share Posted December 6, 2006 To All, I haven't been here in a while. We have been extremely busy and had so much #*%! going on. My boyfriend and I, some that will not co-operate. He was just diagnosed with NSCLC this past summer. I just lost my hearing and have mild to severe vertigo with it. His son will not do what he needs to take care of himself and his FIVE children. My family on the other hand, thinks I can just get up and do all the running around they want me to. My boyfriend is in so much pain still. It was a little better for a while. They found another little spot on his liver. But it hurts mostly in his bones. I am tring to cook meals to help him gain weight. He was thin before, but he has lost way too much. Communication is difficult because I cannot hear. I'm frusrtated. I'm trying to do it all and I don't think I can like I used to. His parent live far away.I just don't know what I'm doing right or wrong. My family tells me I live too far away to come and see us. I only live on the other side of the city, not another country. It takes just as long for me to go see them. For the Holidays he wants to be at home. His family is coming over Christmas Day. My Mother is mad that we aren't going out that day. I can't even drive halve the time because of this vertigo. Why do the have to give me so much grief if I don't do it their way for one Christmas. They don't even talk to me there. My kids are healthy and so are most of my brothers and my sister. We are the ones who are sick. But they expect Us to get up of our lazy butts and go see them. Non of them have been here but mabey one time in the last tree years. Sorry but I neede to vent here. I don't understand any of this to begin with. I feel like I'm the only one who feels like this. Aliboo Quote Link to comment Share on other sites More sharing options...
Ry Posted December 6, 2006 Share Posted December 6, 2006 Families....boy you gotta love em, don't ya? Don't feel guilty -- I am a little ahead of you in this journey and found out (like you are) that you just have to say no-- just say no (I sound like Nancy Reagan). If you're asked to do something just explain why you can't-- he wants to be home, he is in too much pain, I can't drive- whatever and then forget about it. If they want to see you they can come to you. Life has changed for you both and everyone needs to adapt. Quote Link to comment Share on other sites More sharing options...
Nick C Posted December 6, 2006 Share Posted December 6, 2006 Vent all you want. Praying for understanding finding its way to you by those around you. Quote Link to comment Share on other sites More sharing options...
Flowergirlie Posted December 6, 2006 Share Posted December 6, 2006 I agree! You have enough on your plates and do not need the family stepping in and making demands, you need support if anything, not extra stress. It is OK to say No. Cancer certainly has proven not to accommodate our schedules and also isn't convenient but unfortunately is a part of our lives, so everyone has to adapt to how things are now. Holidays are to at least try and enjoy so remind everyone of that and then go on with your schedule and the way all of you want to spend your special day and if your family would like to join, then it will have to be on your terms. Happy Holidays! Quote Link to comment Share on other sites More sharing options...
Don Wood Posted December 7, 2006 Share Posted December 7, 2006 You've got the right priority for you right now -- go with it. If the others don't understand, it is their problem, not yours. Sorry you have to put up with so much on top of the disease. Don Quote Link to comment Share on other sites More sharing options...
Tracey Huguley Posted December 7, 2006 Share Posted December 7, 2006 I'll keep you guys in my prayers... Do what you need to do for yourselves first....you are the priority right now... Love, Tracey Huguley Quote Link to comment Share on other sites More sharing options...
Aliboo Posted December 7, 2006 Author Share Posted December 7, 2006 To All, I really don't know what I would do without this website. It's the only place that I can explain what is going on and get support. Sometimes I think I can't handle it and I come here. I always get a positive responce. I also belong to Alldeaf.com, They aren't as supportive as you all are. I really don't live that far from everybody. It only takes 20 minutes for me to get to them. But I told them he was in too much pain to go anywhere. The cold is bothering him too. We are sorta thinking about moving someplace warm. I grew up with this guilt thing. So I guess I shouldn't expect anything to change now. We have been so busy with family problems that I haven't had a chance to come here. Then He lost another 8 pounds. I have tried EVERYTHING. I told him I was gonna have to get tough with him and he just laughs that off. So I guess that part is good. But he serously needs to gain some weight. I appreciate All the support, Aliboo Quote Link to comment Share on other sites More sharing options...
Flowergirlie Posted December 8, 2006 Share Posted December 8, 2006 I don't know if it will help, but my husband couldn't eat much of anything but he could eat omelettes with American Cheese and M&M's for desert. It is not a healthy diet really but it put ALL of the weight back on and then a little extra (and my husband had lost 35 pounds!). His oncologist said it is better to have the weight no matter how he puts it on (some may not agree???). Good Luck! Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 8, 2006 Share Posted December 8, 2006 Aliboo: I'm all too familiar with the vertigo and nausea -- usually occurring without warning and in the most inconvenient places -- associated with Meniere's Disease and other vestibular conditions such as your apparent variety, Autoimmune Inner Ear Disease. Fortunately my hearing loss is limited to one ear and, after 12 years dealing with Meniere's, my vertigo and nausea are pretty much under control. My best friend, always in my pocket, is meclizine (aka Antivert), which I take 3 times a day "whether I need it or not." Many people can't take meclizine because of the extreme drowsiness it causes them, but I'm not affected in that way. You certainly have my sympathy. Being a caregiver is hard enough without having the "unreliability" factor thrown into the mix -- not knowing if you'll be able to drive, walk, or even stand 5 minutes from now or for your boyfriend's appointment 2 weeks from tomorrow. And the vast majority of people, including family, simply don't understand. They see you on your good days, when you're out and about and looking the picture of health -- never on your bad days, when you're curled up in a corner somewhere wondering when and if this episode will ever end. Send me a PM if you think I can help in any way. My very best wishes and Aloha. Quote Link to comment Share on other sites More sharing options...
Suzie Q Posted December 8, 2006 Share Posted December 8, 2006 Ali, If he is really having a hard time with the weight loss, ask his doctor about prescribing Megace. It enhances the appetite, though it won't make the food taste better. That's not a slam against your cooking skills, but the taste sense is usually affected by chemo. ~Karen Quote Link to comment Share on other sites More sharing options...
Lisa O Posted December 11, 2006 Share Posted December 11, 2006 You have so much in your life that is difficult. It is that much more important that you and your boyfriend release ALL GUILT and make sure you enjoy the little things you can every day. The guilt is not yours, it is your families.... so you must try hard to let it go. Do every thing you can to make things pleasant for YOU and YOUR BOYFRIEND. If others choose to join you for happy and joyous times.... great. Otherwise, they are making their own choices. Quote Link to comment Share on other sites More sharing options...
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