Latest Caregivers discussions http://www.cancercompass.com/message-board/caregivers/1,0,122.htm Thu, 15 May 2008 00:00:00 GMT Thu, 15 May 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am a caregiver to my spouse with Stage IV Colon Cancer with liver mets.  Friends and family have been asking how to help out.  Since you are a caregiver, what types of things do you request?  Someone told me yesterday I need to put my pride aside.  It is just so overwhelming to me because it just seems that so much is falling apart around us 'literally'.  Keep up your strength!!  I sure am trying. http://www.cancercompass.com/message-board/message/all,23842,0.htm Norma50 Thu, 08 May 2008 00:00:00 GMT Hi everyone, My Dad was diagnosed with esophageal cancer with mets to the liver in October.  When he was first diagnosed, we thought that conventional western medicine was the way to go, and that people who chose the "natural" route were crazy.  That is what our society has got us believing.  Now I feel the opposite, but that is neither here nor there at this point.So Dad had 5 months of chemotherepy.  This did not work.  He was so sick when he was on chemo but the 2 weeks in between treatments he was ok.  But after 5 months, we realized the chemo was not working.  They offered him another type of chemo with a 10% chance it might help, but Dad declined.  We started going to naturalpath.  Since a month ago, Dad has been taking hemp oil (phoenix tears hemp oil), apricot seeds, vitamin C infusions, and other supplements.  He has gone from being able to go for short walks to not being able to get out of bed except to go to the bathroom in the last 2 weeks.  He's loosing weight, struggles to talk, has fevers around the clock unless he is on tylenol, which he is a lot.  His abdomon and ankles are swoolen and worst of all, he's always nausious, and throwing up many times a day.  Cannot eat much because of this.I always had hope through all of this.  Even last week when his medical doctor told him he had a few months to live (he did not know that Dad was doing any alternative treatments)  But we have tried what seems like everything now and nothing is making this any better, he's just getting worse and worse.  Is it time for me to give up hope and accept that he is going to die?  I cannot see how he can come back from being this ill.  I can't see how the treatments he is on could work now that it's been over a month and there is NO sign of him getting any better.  At what point do you give up hope and just accept? http://www.cancercompass.com/message-board/message/all,23824,0.htm lland Wed, 07 May 2008 00:00:00 GMT Just wanted to post that my lovely beautiful Dad has lost his battle with cancer and passed over today. He was diagnosed in September 2007.  I have used this board many times to post messages to help me cope and without it I dont think I would have.I have to say the diagnosis is much worse than the passing.  No more horrendous suffering. so anyone out there coming up to this point don't be afraid.My prayers are with everyone who is suffering from this disgusting disease and all I can say to the carers is keep strong. Regards Gail (England)  http://www.cancercompass.com/message-board/message/all,23821,0.htm Gaily Wed, 07 May 2008 00:00:00 GMT I hope this isn't an insensitive or dumb question but I'd like to know how others have approached this. If and when there comes a point that the treatment is taking such a toll on quality of life that it's not worth it, how do you recognize this point??  Do you let the doctors tell you first that they've done all they can?  Do you just "instinctly" know?  I want myself and my husband to fight this cursed disease with all we have but at the same time, doesn't this have to be weighed against quality of time and living life on one's own terms?  I really don't have any answers right now.  In fact, I pray we never get to this crossroad. http://www.cancercompass.com/message-board/message/all,23798,0.htm rose01 Tue, 06 May 2008 00:00:00 GMT Hello:My mother has lung cancer (adenocarcinoma) stage IV and has fluid on the lung. Presently she has a portable container which collects the fluid coming from her lung.Does anyone have suggestions for helping her find comfort. The tube seems to stab and burn which is very painful.Thanks, Yvonne  http://www.cancercompass.com/message-board/message/all,23603,0.htm RunningNana Wed, 30 Apr 2008 00:00:00 GMT Two weeks ago my girlfriend had an ovarian cyst removed (she's 43), and will begin chemo soon for a period of about 6 months.  She will receive the 'most aggressive' version through an abdominal port in one session and into the vein in another. My question:  We've heard that the side-effects can range from almost none, to very severe.  I would like to know if the community here has any ideas for reducing side-effects of chemo?  The doctors will give her medications, I'm sure, but you people that have been through this may have advice for me to pass along.  All replies appreciated.Good Health, tallcliff   http://www.cancercompass.com/message-board/message/all,23539,0.htm tallcliff Tue, 29 Apr 2008 00:00:00 GMT In my previous postings I spoke of my Dad wanting to quit chemo due many bad reactions he had to the chemo. April 1, 2008 was his official last treatment. April 3 he was we had to rush him to the hospital because he was shaking, dizzy, weak, and had extremely low blood pressure. The paramedics had to shock him. He was in Intensive Care for a few days and they think it was sepsis. THINK is the key word. These Doctors have no idea what they are doing!!! The Oncologist even went as far as to say my Dad had BAD LUCK!!! What kind of a person says that? Well he was discharged on broad antibiotics. Last week he was rushed again to the hospital for the same symptoms. He was discharged in Thursday and we had to take him again last night. Once again, no answers!!! My dad is on a medicine only order per his wishes. It is so hard knowing what he is going through. He has suffered so much. I find myself crying daily. Anything can trigger it. My kids think that he is going to be better because everytime he used to come out of the hospital he "felt" better and was self reliant. Sadly, that is not the case anymore. Their Papa has made a decision to be on Hospice and might not be here 6 months from now. We support his wishes but I will be honest with you, it is tearing me apart. I can't imagine life without him. He is our rock. I look at him everyday and cherish the time we have with him, yet in the back of my mind I cringe at the fact time is againt us. Time dictates how long we are all here. I wish I could stop the clock, make him free of cancer and let my kids have their Grandpa forever. BUT I can't. All I can think of is how much he means to us, how he will be greatly missed and how much our lives will change. I find everything even harder because I am his primary caregiver. He divorced 11 years ago and I am responsible for caring for him. It is so hard emotionally and physically on my body. I have Fibromyalgia and when I stress out, get depressed or don't sleep, my body reacts. I deal with it and keep looking forward because I know my Dad needs me to be strong. I feel like I am burning out. If I feel like this now I dread how I will react when he passes. I am so scared to say goodbye. http://www.cancercompass.com/message-board/message/all,23487,0.htm welovedad Sun, 27 Apr 2008 00:00:00 GMT I want to help my friend with cancer, but there are forces at work here greater than me. It's not just cancer. That sounds like a cakewalk, just cancer.  In reality, she's a complex person. It's all so logical to me: Someone has cancer so you make their lives super-comfortable and give them all they need so they can get better quickly. That's what I'm thinking. She's thinking let's keep things as normal as possible. Let's try to make this as minimal an interruption. Let's not bother anyone. Somehow I've crept through that brick wall and she leans on me. But no one else can know, that's her dream. She doesn't want to do anything weak. She doesn't want to feel like life is passing her by. My paradigm cannot survive in her paradigm.Have you run into this paradox?  http://www.cancercompass.com/message-board/message/all,23103,0.htm spaceponynumber7 Tue, 15 Apr 2008 00:00:00 GMT My fatherinlaw was diag'd w/gastric adenocarcinoma in Mar '07- underwent partial gastrectomy....then in June due to stricture complications took the rest of his stomach. At the beginning of Mar this year, he'd gone to ER for what he believed to be rib issue....cancer is back, in liver too many masses to count including one that measures 9.5 cm. found spot on lung as well. Has opted not to do chemo, because it would only (maybe) reduce symptoms....extend life 1 month (again maybe)He has to have someone with him at all times, I stay during day, my husband an only child stays evenings.....the motherinlaw is in end stage chf and at this time is in a rehab facility.....Sorry so long, but I'm just wondering what additional symptoms to anticipate, and how to help him. We're just getting started on this journey, and he hesitates to accept any help, even though he's too weak to walk without staggering. Admitted to hospice care this past week, but wont even try the walker they provided. I would sure appreciate any input from those of you who have been through, or are going through this.Thanks so muchTommy  http://www.cancercompass.com/message-board/message/all,23000,0.htm grltommy Sun, 13 Apr 2008 00:00:00 GMT To JW,Hopefully you are doing better after posting your letter.  I am the caregiver for my husband of 38 years.  We, too, do everything together and travel when we can.  His treatment hasn't caused him the problems your wife is experiencing, but there are times when he just doesn't feel up to doing anything.  We did spend last week in Gatlinburg with our son, daughter-in-law, and grandsons.  He kept on the go and was tired when we returned home, but he did enjoy the time away from home. Keep encouraging your wife to be up and about.  It's normal for you to feel depressed, but talk with your family physician about it and get help before it gets too bad.  I am on Lexapro for depression, and it has helped.  There are times when you just have to get help, now may be the time for you.  You need to be strong and upbeat for her.  When you feel down, don't let her know.  Get away by yourself (the park is good), walk, vent your frustrations outloud, and do whatever you need to do to clear your mind and return to her care.  If your spirits are good, hers will be, too.  Good luck to you both.Jenny http://www.cancercompass.com/message-board/message/all,22917,0.htm jennypot Thu, 10 Apr 2008 00:00:00 GMT Hi everyone, I'm new here.  Around August of last year, my dad was diagnosed with Stage 4 oral cancer.  He immediately began chemo and radiation for a total of about 8 weeks.  Initally he was very positive about the whole situation, was determined to "beat" the cancer, etc.  However, after the treatment, he said he was done.  He would not go back for the follow up PET scan to see if the cancer was indeed gone.  Now, (6 months later) he is determined that the cancer is back.  He says he can "feel" it.  And maybe he can.  But the problem is, he doesn't know for sure......and he's given up.  He says that he is ready to die, he wishes he would die, he's tired of fighting, etc.  He hardly eats, sleeps constantly, says he has no energy and is dizzy all of the time.  He is convinced that the cancer is back and has spread to his brain.What should we as his family do?  I hate to see him give up like this!!  And we don't KNOW if the cancer is back, because he won't go to the doctor!  How are we supposed to just sit and watch him waiting to die??It's so hard.  Has anyone been in a similar situation?  We are at a loss.  Sorry this was so long. http://www.cancercompass.com/message-board/message/all,22767,0.htm Daddysgirl01 Mon, 07 Apr 2008 00:00:00 GMT Shaved husbands head before he started his chemo treatments. When will it startt to grow back? Any tips on what I can do to help it while it's growing back? Like, scalp treatments etc.?Thanks http://www.cancercompass.com/message-board/message/all,22685,0.htm michael55 Thu, 03 Apr 2008 00:00:00 GMT I just want to thank you all for replying to me so quickly and giving me so much information. I thank you and will be calling these numbers and contacting the websites. http://www.cancercompass.com/message-board/message/all,22562,0.htm makeit Mon, 31 Mar 2008 00:00:00 GMT Both of my parents where diaignosed with terminal cancer 7 weeks apart.  I am their only caregiver as of yet.  I have twin 15 year old daughters, and a 13 year old son.  I have a brother, but he lives about 250 miles away.  I was laid off from my job in October.  Soon my unemployment will be coming to an end.  I don't know how I will keep taking care of my parents, and work too.  Even if I got a job, how could I work and worry about my parents at the same time?  Not to mention take care of my children too.  Does anyone know what I should do when my unemployment comes to an end?  This whole thing just makes me ache inside.  I don't know what to do anymore.  They are both so sick, and I can't help but to think about what things will be like this time next year.  I try to only look at one day at a time, but the holidays make me wounder if it will be my last one spent with them.  I am divorced, and my parents are my best friends.  How will I ever live without them? http://www.cancercompass.com/message-board/message/all,22264,0.htm kareng Sat, 22 Mar 2008 00:00:00 GMT My mom is having chemo for the first time on Wednesday.  (taxol/carboplatin) She has stage lV lung cancer with mets.  My concern is the night before she goes in she has to take FIVE decadrons at midnight and another 5 at 6 am.  She already acts VERY different when she's on this steroid, I just can't imagine what 10 will do.  Does anyone have any input with this situation?  I've already talked to the doctors office and if she wants the treatment on Wednesday she has to take the steriods.   Thank you, Bobbi http://www.cancercompass.com/message-board/message/all,21083,0.htm bobbi678 Mon, 18 Feb 2008 00:00:00 GMT My dad has cholangiocarcinoma and has reached a stage where the end seems relatively near. He was diagnosed in 2004. I have a mother who is good hearted but very controlling. She makes it hard for us to be together and be happy because she is constantly venting her anger at me. I try to tell myself that she doesnt mean half the things she says when she's angry but thats getting harder to do as sometimes all she says to me all day is angry stuff. I feel like the support we give each other is minimal and thats really crap because we really need each other right now. I had a very negative thing happen to me two years ago and feel like she has never been there for me because she is so busy obsessing over my dad. Before July 2007 my dad could walk around, eat pretty much do whatever he wanted but my mother would constantly try to confine him to the house in an effort to 'make him better'. 'Over exertion might lead to further spreading of the disease.' I have really resented this but he always let her do it to him so one day I just stopped interfering. If he allowed it to happen then there was only so much I could do to stop it.But in this whole process I feel that she has completely forgotten about me and my needs. I know her husband and my father is going through a really difficult time right now but that does not mean her role as a mother is completely wiped out. I admit that in the past four months he has needed a lot of care but I have moved in with them to help too. I dont want to sound selfish and I definitely know that not everything is about me but I just feel that we should be supporting each other right now. We have both had our differences from the start but this is one situation where only the other knows what we are going through. When I think of life after my dad what scares me as much as his death is my mother. I don't see us mutually being there for each other. I'm going to have to take care of her. But then who will take care of me?  Who can I lean on? She is very controlling and manipulates me through her guilt. I have stopped seeing almost all my friends unless they come around because when I go out she sees it as a sign of me not caring.And she feels resentful that she is at home doing all the work while I'm out 'having a ball', even if I'm just grabbing a quick dinner with an old friend.I come from a very conservative Indian family where moving out while living in the same city as your parents is not acceptable. And moving cities just to move out might may well be what I end up doing one day but if something happens to my dad there is no way I can just leave my mother in the lurch. I have offered many times to stay at home with my dad while she goes out to do her thing, I've tried to get her to just go for a half an hour walk to clear her head but she wont leave his side.I don't know what to do.Maybe there is nothing I can do..Is anyone going through anything similar?Does anyone have any words of advice?Is any mother in a situation where she feels she might be doing this to her child?If yes, I would love to hear from you.As you guys can probably tell from the lack of structure in my message, my brain is everywhere right now. Just hearing from someone who knows how hard cancer can hit people who dont even have cancer would be nice.Thanks  http://www.cancercompass.com/message-board/message/all,21020,0.htm xyz123 Sat, 16 Feb 2008 00:00:00 GMT I would like to hear from patients and caregiver/spouses of Multiple Myeloma. My wife was diagnosed with Multiple Myeloma March 04 1996. She was 33 yrs. old. We were told that there is no cure and she also had Kidney failure.She was not expected to live past the weekend. I can assure you that there is hope in fighting and surviving this terrible disease.The road is hard and very emotional.Is there anyone else who has survived this long or longer? I need Info on treatment for someone with this Bone Cancer this long.My wife's Multiple Myeloma Is now in remission,but she has several collapsed vertabrae.Any Suggestions on controlling pain. http://www.cancercompass.com/message-board/message/all,20981,0.htm BIGELO13 Fri, 15 Feb 2008 00:00:00 GMT Does anyone have any experience with Hospice houses?  My mother has had home hospice, as well as 24 hour care for almost three months.  When I arrived today from work, she told me that she was thinking of going into a hospice house, and had spoken to the hospice nurse about it today.  I know that one of the people who is taking care of her (a friend of mine) told her last night that we need to hire more people because it was becoming too difficult for my brothers and me to continue as we are.  Now I'm troubled that my mother's decision is based on her worrys about being a burden.  I never wanted her to feel that way.  Would she be more comfortable in a hospice house?  In some ways it would be easier for me, in other ways more difficult.  I just don't want that to be a factor and I've worked very hard to try to keep her from worrying about me.  I can't undo what has been done so I think it's going to happen. http://www.cancercompass.com/message-board/message/all,20890,0.htm Rosalind Tue, 12 Feb 2008 00:00:00 GMT My dad was diagnosed with cancer on June 1st of 2007 and we lost him on June 23rd. Not a day goes by that i dont' wonder if there is something I could've done to save him. I miss him more than I ever thought physically or emotionally I could ever miss a human being. I feel robbed by this cancer and robbed by how fast it all went down. Some days, I'm not sure what I can do to feel better. http://www.cancercompass.com/message-board/message/all,20841,0.htm nyazgirl Mon, 11 Feb 2008 00:00:00 GMT I recently found out that my mother has been diagnosed with colon cancer. It was a big blow to the image I had of my mom. She's so tuff, so... unbreakable. For the last 3 yrs. she has refused to talk to me due to a disagreement even thoe I call and stop by. And on this day, out of the blue, I got a call. What made the pain even worse was that, not only did she have this potentaly fatal desies, but that she was diagnosed 2 yrs. ago, underwent surgery and chimotherapy and THEN called to tell me. My mom has always been pretty simple. I think the biggest thing shes ever asked for was a $10 bottel of body wash that she liked the smell of. All I want to do now is be with her. I don't care about the fights or the diffrences between us. I just want her to get healthyer and happyer every day. My mother is very religious. I have always admiered her conviction and faith. But I want to figure out a wa to tell her she should lean on her children for strength too. Don't just talk to god, talk to the kids god gave you. We love you too. http://www.cancercompass.com/message-board/message/all,20730,0.htm smerk Thu, 07 Feb 2008 00:00:00 GMT My husband had Modified radical neck dissection a year ago and still having pains in his neck.  Also, he has no feeling on his neck, face and ear after having surgery but there are times he gets shooting pains were he had the surgery.  Please help.  How long do these side effects last.  He can be feeling good and than out of no were he gets shooting pains.  He told his doctor about it and his doctor said it's the nerves in his neck growing back.Thanks,   http://www.cancercompass.com/message-board/message/all,20575,0.htm spizzakid Sat, 02 Feb 2008 00:00:00 GMT As others have said before me...this is my first post, so forgive the rambling.My Mom has had Non-small cell lung cancer for over 7 years.  She has had Leukemia for 10 years, but was never symptomatic will either disease for several years.  Her lung cancer was originally discovered as small shadows on a chest x-ray in 2001.  Nothing was done for several years - the cancer, (I mean shadows), never advanced. Yeah, I know - great doctors!  Finally, during another chest x-ray it was discovered the cancer (oh, did I mention it was cancer) had indeed spread across both lungs.   She's been through 3 rounds of chemo, radiation to her lungs and shoulder (metasized to her bones last year) Tarceva, Iressa, and nothing has stopped the incredibly slow progression of this cancer.  It's been a  miracle that it's moved so slowly.  For so many years, she went without any treatment at all.  Living a very independent life as  a painter. She started up again with radiation for her bone cancer, which she tolerated pretty well.  In April, she had a bone strengthening drug that just about killed her.  So, I moved her into our home with my husband and 5-year old where we could care for her.  My mom had a g-tube in June and has steadily gained her weight back.  Nothing but water and a couple pills since then.  We had hoped she would feel better with the weight gain.  But, steadily, she declines.  Just very, very slowly.She stays in bed sleeping and watching tv 95% of the time.  In the last month, she develop fluid under her lung, which I understand is a common symptom of lung cancer.  The doctor has given her liquid Vicadin for her pain and cough, which seems to help but only for a few hours.  Her cough is so deep that it can cause her to vomit.  I've propped her up on 2-3 pillows, but any other suggestions are greatly appreciated. The doctor doesn't want to move her to hospice since Medicare won't pay for a chest tube to remove the excess fluid.  I'm at a loss here because I don't know what I'm doing.  I feel as though it's not enough.  Does anyone have any suggestions as to when is the best time to call in Hospice?  I need some support in caring for her in the best way possible. Thanks for allowing me to ramble.  As you all know, it's difficult to find support for everything you go through as a caregiver of someone you love so much.     http://www.cancercompass.com/message-board/message/all,20522,0.htm daughterpatti Thu, 31 Jan 2008 00:00:00 GMT I too, need to vent. It's been almost 2 years of me "taking care" of mom. She didn't go to the doc's until she was stage III - or IV because she has an innate fear of doctors. She watched her sister die while under the care of doctors and chemotherapy when she also had breast cancer. Long story short - the first half year she let the family in on her illness, I was driving back and forth multiple times a week to her place to make sure she had what she needed. It finally got to the point where the only option was to move her in with me. So for the past year, she has been living with myself and my boyfriend. Now she's actually better than she was a year ago - put it this way, she's no longer on oxygen - but she's far from okay without me. She's still undergoing chemo - it has recently spread to her liver.  I feel horrible for feeling the way I feel, but the only way I can describe this is that I am tired of taking care of her. Mind you, I'm a positive person and I've been alright with all this so far...I take it as my eldest daughter duty. By the way, my younger sister is living abroad, no other family, no ex-husband, no one else but me is available to take care of her. All of a sudden, I feel resentful that my boyfriend can't support me financially so that I can spend the time I need to to properly take care of her and just be with her without the anxiety that I'm not working and making more money (that's needed as well), AND on top of that, becoming resentful that  I even have to  be at someone's beck and call, and I can't believe  I even feel this way. I feel imprisoned.  But I do.  I just hope it's passing...and that I'll return to  what was a very mature and loving mother/daughter/friend/friend relationship and feeling with my mom.  I try taking time for myself and for my bf and i, but everytime I leave for any extended period of time, a night, a big event, etc...I come back to my mom having developed some (Psychosomatic?) extra issues that I'll need to tend to intensely until she's better...then I try to take some time for myself, then again, the cycle.  I feel horrible for feeling horrible and resentful. I have every intention of taking care of her as long as needed...not sure why I feel different all of a sudden.  Will this pass?  http://www.cancercompass.com/message-board/message/all,20064,0.htm merrielou Thu, 24 Jan 2008 00:00:00 GMT Just need to find a way to vent. I was on the phone today for 45 minutes trying to make an appointment for my mother-in-law with her cancer doctor. She has Stage 4 lung cancer, refuses treatment but also refuses to go on hospice. She loves to go to doctor appointments, and so we are going again just to find out the same information for the umpteenth time. She is having constant back pain, and we have been to several docs-all of whom have recommended yet another specialist, none of whom have just said "it's the cancer".  She is 78 and just buried Pop in October who also had lung cancer, but he put himself on hospice (what a blessing!)  I am the closest child(in-law) and have the most flexible job so I do all the driving and home care. It is the frustration of me knowing there is nothing really left to do for her, and yet we continue to go to doctor appointments because she is still looking for a magic cure. We live in a large metro area and mom will only see doctors affiliated with a university hospital that is nearly one hour away. Each visit takes about 5 hours out of my day with getting her in and out of the car and huge medical center. She still lives her house but cannot do any of the cleaning-i get to do that also.  I think I am just tired today, but wonder if anyone had some magic for me?! http://www.cancercompass.com/message-board/message/all,19988,0.htm verdh70 Tue, 22 Jan 2008 00:00:00 GMT What is your experience when the cancer patient is an alcoholic and resorts back to it in an effort to cope?   http://www.cancercompass.com/message-board/message/all,19444,0.htm Aaaaaaa Sun, 06 Jan 2008 00:00:00 GMT