Aliboo Posted July 7, 2006 Share Posted July 7, 2006 Hi Everybody, I haven't had much time to update or post. My boyfriend is ending his third week of radiation and chemo. So far this is the first set. It has been really hard on him. He was in the hospital last week for dehydration. It's hard to get him to eat or drink anything because of the pain. The pain is less than what it was. We still have another week of radiation and chemo. Then I think they are going to do another scan to see if it shrunk. Please pray for him (Tom) that it did. I am so scared for him. I have never seen anyone in that much pain all the time in my life. I feel totally helpless and inadequete. At the same time we are learning a lot about what to do or not to do. His Mom is here helping, but she goes home on Monday. Yesterday (Thursday) was a really bad day. I'm sure they will come and go. We all lost it at some point. The stress of worring about money and we are going into cobra Ins. Because he has used all his comp time. He's mad and of course scared, so am I. Sorry I just had to get all this out. Sometimes I feel like I just don't know what to do or even how to do it. We are super tired and sleep dosen't even help. Thank You everyone, Aliboo Quote Link to comment Share on other sites More sharing options...
cindy0519 Posted July 7, 2006 Share Posted July 7, 2006 Aliboo, I understand how completely overwhelming this diseases can be! The best advice I can offer you is to step back for a moment..take a deep breath and then reapproach things taking each day, each minute...one tiny step at a time. I found this to be the best approach to not being completely devistated by all that was happening or worse yet - by all that I thought might happen if I allowed myself to think about what was ahead of our on Dad's "journey". As far as the pain that your boyfriend is in.. if the pain med's he is currently taking are not effectively controlling his pain, insist that other medications be tried. My Dad had incredible amounts of pain to and there is NOTHING worse than watching your loved one suffer! On the other hand, there is PLENTY that CAN be done to control pain, you, boyfriend/doctors may just have to "experiment" to find the right answer. Another piece of advice, if I can be so bold..is to arm yourself with knowledge. The more you know/understand about what is happening the less overwhelming it may be. I know for me...knowledge is power! I wanted to know exactly what was going on and always made sure to ask questions and insist on answers (even if the doctors had to get back to us with them). Hope they get BF's pain under control soon! Cindy Quote Link to comment Share on other sites More sharing options...
Welthy Posted July 7, 2006 Share Posted July 7, 2006 Aliboo, Aaahhhh, you are taking the roller coaster ride of your life. I'm so sorry that you are down right now. It is so frustrating to watch a loved one struggle. Please come and vent anytime. I think Cindy had a good idea about "arming yourself with information". That seems to be the only way I can have ANY amount of control over my husband's situation. (and I'm a first-class control freak!) I always say that as opposed to taking it a day at a time, there are times where I'm down to a minute at a time. This is really scary stuff we are dealing with and it takes such an emotional and physical toll on the caretakers. I hope you start an ascent on this coaster ride soon -- and your boyfriend too! Welthy Quote Link to comment Share on other sites More sharing options...
ErinC1973 Posted July 7, 2006 Share Posted July 7, 2006 You need support...you've got it. It is beyond overwhelming to have to deal with all of this when I know, for myself, I was still in denial that it was happening, and we had to spring into action fast. You absolutely HAVE to do what you need to keep your strength up, though. I am so sorry for all of the money problems. It always breaks my heart to hear about this. My mom cashed in over $30,000 worth of stock to care for herself over the course of two years. Of course not all people have this option. Make sure that his pain gets under control SOON. There is just no reason for a person to be in that much pain. I hope and pray with everything in me that things improve and he gets good news after his rounds of chemo and rads. Take care of YOURSELF, and update when you can. We will be thinking of you here. Quote Link to comment Share on other sites More sharing options...
Tom K Posted July 7, 2006 Share Posted July 7, 2006 From all that I have read, I understand that uncontrolled pain is one of the reasons people give up this fight. You must tell his doctors about the pain and insist they provide him relief. If they can’t help him, find the pain management team at the nearest hospital and seek their help. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted July 7, 2006 Share Posted July 7, 2006 Aliboo, I'm so very sorry you are going through all this . My husband never had pain, so I can't relate to that , but I do understand from reading here that pain can be controlled. I would insist on it. Noone should have to suffer with all the different options available to patients . Wish I could offer you more than this . You have my prayers. Sue Quote Link to comment Share on other sites More sharing options...
Don Wood Posted July 7, 2006 Share Posted July 7, 2006 Prayers for Tom. LC IS overwhelming. Do vent here anytime. We know. Keep us posted. Don Quote Link to comment Share on other sites More sharing options...
Maryanne Posted July 7, 2006 Share Posted July 7, 2006 Hi Aliboo, Prayers sent to Tom for pain relief. No one should have to suffer like that. Your heart must break everytime he cries out. Speak to the Docotor and find out what they can do to alliviate this. There is a morphine patch he may be able to wear plus many other meds to help him control his pain. I am so sorry you all are going through this. We are always here to give you support or answer any questions you may have. I pray that Tom's pain gets under control and they find shrinkage in his scans. Maryanne Quote Link to comment Share on other sites More sharing options...
Kaffie Posted July 7, 2006 Share Posted July 7, 2006 I can totally understand why so many people gve up who can't get pain relief. I agree your friends needs to go to a pain relief center if his docors can't help Quote Link to comment Share on other sites More sharing options...
kamataca Posted July 8, 2006 Share Posted July 8, 2006 Lots of prayers going out to both of you. We've all had times when we've lost it. It is so hard to see someone you love suffering. I'll pray for strength for both of you! Kelly Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 8, 2006 Share Posted July 8, 2006 1) There are lots of ways to assist in pain Management. Start with basic meds 1 med for every 12 hours or so and a second for breakout pain More frequent. My wife had Oxycodone every 12 and oxycontin every 4-6 for break out pain. yours or His I should say will be different. 2) you can assist with Massage therapy or accupuncture for pain if he is up to it. Do not know a guy who would turn down a massage once in a while. And differnet types of massages. 3) If you don't lose it once in a while you do not care enough. Getr in the car and scream come here and write, go out at night before bed and talk to God under the stars. I have done these all and my Fave is outside on a nice night talking to God and occasionally yelling but always apologize afterwards. God can hear better with no roof in the way and the view is comforting as well. 4) Knowledge is power ask questions often study a lot. these are great forums and great links for Info you may need. We cover all topics. I run the new med and clinical trial forum. I lost my wife 6 months ago and I want to make a difference against this disease. I am still here helping anyone who caomes by and asks. I hope this has helped all your concerns for now. If I can help you can PM me and I will get back asap to you and Tom. Sending Prayers for strenght and stability. 5) take care of yourself. If anyhting happens to you it will be worse for Tom trying to get better and tke care of you allso. get your rest you have to be healthy and Strong to take care of Tom. Quote Link to comment Share on other sites More sharing options...
Aliboo Posted July 8, 2006 Author Share Posted July 8, 2006 Hi Everybody, Thank You all for the support. Friday was a much better day. They have been working on the pain too. i think a lot of the problem is communication. I am deaf. My boyfriens told me and his Mom to NOT ask questions. That he would tell me what I need to know.So that's why I have been looking up every single word so that I can understand at least a little of what's going on. I just lost my hearing last year. I still get a paranoid feeling that everyone is talking about me. I know they're not. It is very hard to keep my head straight. Sometimes I feel like everybody knows what's going on except me. Then I feel guilty for worring about me instead of him. I get stressed out and I get severe vertigo too. I had to tell everybody yesterday that I needed them to communicate more with me. I get little surprises like I have to drive somewhere to go get this person or go get that at the last minute. They wanted me to go pick someone up yesterday and them his Mom asked me if I minded going by myself instead of making my boyfriend ride with me. It was his son we were picking up and I didn't know I was going much less making anybody ride with me to begin with. I started a note book so I could write down all the appoinments and meds. So It's just going to take time. Thanks for letting me vent. I also have a name and E-Mail of a social worker. I just got it so I have to take the time and E-Mail her. Hopefully she will have somes Ideas on how to help. Thanks Guys, Aliboo Quote Link to comment Share on other sites More sharing options...
RandyW Posted July 8, 2006 Share Posted July 8, 2006 If you need research help PM me I am here frequently and do not mind researching things for anyone or any reason. ASK QUESTIONS. be proactive as much as possible or make sure heasks questions. Can you Communicate with his Dr over the phone I think it is TTY? would that help you at all? Just throwing out a couple of ideas. Quote Link to comment Share on other sites More sharing options...
Guest ssgg Posted July 9, 2006 Share Posted July 9, 2006 I feel like your words could almost be coming out of my mouth. It is so very stressful and upsetting to see your partner in pain and to have no ability to make it better. I second all the good advice by previous posters (arm yourself with knowledge, keep insisting on trying different pain medications if the current ones don't work and find a release for your own stress) - there are very wise people on this Board. When new issues arise, trawl through this message board because you will often find a previous post which will deal with something similar and which may help...it has certainly been a God-send for me. I wish you and your boyfriend well. Quote Link to comment Share on other sites More sharing options...
ztweb Posted July 10, 2006 Share Posted July 10, 2006 I personally believe cancer mentally drains everyone involved. It is amazing to me when I watch what it has done to our family. It is stressful. I hate to suggest this, but have you looked into antidepressants? I say this as many in our family have takent he plunge since dad's diagnosis and I can honestly say it helps so much. Best of luck. God Bless, Jen Quote Link to comment Share on other sites More sharing options...
Aliboo Posted July 20, 2006 Author Share Posted July 20, 2006 Hi Everybody, We have been busy so I have not checked in for a while. My boyfriend has been feeling somewhat better. his appetite has picked up and the pain has been graetly reduced. We still have bad day here and there. We just ended 4 weeks of radiation and chemo. In tree weeks they will do more CT and P.E.T. scans to see if this yucky stuff has shrunk. I appreciate EVERYONE'S support and prayers. This is my best souce for info because of my hearing loss. It gets really frustrating sometimes. But we are getting through it. I do have a question. They said that the pain he has is in his bones. someone said they are "Bone Mets" what exactly are they and how do they know, and how do they ease the pain from them? Thank Guys, Aliboo Quote Link to comment Share on other sites More sharing options...
ma's kid Posted July 20, 2006 Share Posted July 20, 2006 Hi Aliboo, Really glad to hear that Tom's pain is better...I know how scary all of this is and please continue to come here for support and ask any questions that may crop up! As far as your question about *bone mets*...what that means is that the cancer has spread to the bones. Radiation to the specific area is the way this is treated and the treatment (from what I have read here) helps alleviate the pain. Read Don Wood's profile on his dear Lucie (she had bone mets) and maybe that will help explain as well. I know he wouldn't mind if you pm'd him for additional info Please know that you and Tom are in my prayers and remember to take care of YOU too! This disease affects everyone, Aliboo and it's ok to vent and cry. Blessings, Libby Quote Link to comment Share on other sites More sharing options...
Darci Posted July 20, 2006 Share Posted July 20, 2006 I am glad to hear that things are going a little better, and that they seem to be able to manage his pain somewhat - I remember my FIL's oncologist saying "you don't get extra credit for being in pain", and I reminded my FIL of that on many occasions as he didn't want to be taking pain meds all the time. I hope that he continues to feel better. Take care of yourself. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 20, 2006 Share Posted July 20, 2006 Aliboo I am so glad to hear that Tom is doing some better. As Darci said (and I love this analogy!) No extra credit for pain!! He should let the dr know if the pain gets bad again as there are so many options for that. Please keep us posted and you and Tom remain in my prayers Chris Quote Link to comment Share on other sites More sharing options...
Aliboo Posted July 21, 2006 Author Share Posted July 21, 2006 Thanks Everbody, He is eating more. We are back to at least 2 good meals a day. Thats what we were eating before this started. I know this all gonna take time. We are both impatient, but he is more so. I seemed to have more pateince. Don't know where I got it from. But I hope I can keep this up. I feel bad when I have problems. Yesterday I had a severe vertigo/anxiety attack. It starts early in the morning and last all day. I get scared that I won't be able to take care of Tom when that happens. It happens without warning, except mabey a few hours. I can't drive, walk, or anything when that happens. For now I have to ride the attacks out. But the good news is he is feeling much better. There are people we can call in an emergency. I get so much help from this site. I don't know what I would do if it wasn't here. So again Thank You All, Aliboo Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted July 21, 2006 Share Posted July 21, 2006 Aliboo, I am sorry you had such a bad day. It happens, the stress of taking care of someone can be so overwhelming. Perhaps you should talk to your doctor and let him/her know what is happening with YOU and they could give you an anti~anxiety medication. You need to take care of yourself right now as Tom needs you to be strong and healthy in order to help him fight this disease. Great to hear that Tom is eating better! Hopefully that will continue now. Keeping you and Tom in my thoughts and prayers, and know that you are more than welcome to come and talk to us here anytime~ Chris Quote Link to comment Share on other sites More sharing options...
Aliboo Posted July 27, 2006 Author Share Posted July 27, 2006 Hi Everone, Just wanted to bring some updates. We finally have the pain somewhat managable. He is suffering from severe constipation. He is stubborn and waits too long to say anything. We ended up In the ER last Night. We also found out they canceled his insurance as of today. Cobra is supposed to automatically take over, But something is screwed up. It's just one more thing we don't need to worry about. If this keeps up his parents are going to take him home. I am not invited Please help me deal with this. Anybody have any Ideas? Aliboo Quote Link to comment Share on other sites More sharing options...
Don M Posted July 27, 2006 Share Posted July 27, 2006 Hi Aliboo, I don't know much about the cobra process, but I assume you have to apply for it. If your boyfriend moves in with his parents, I hope they include you in some capacity. Maybe you should all talk about it. You could be a little assertive and state that you want to share in his caregiving. Don M Quote Link to comment Share on other sites More sharing options...
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