Caregivers and loved ones also need assistance when it comes to coping with cancer. Our online forum resources at CancerCompass.com are a helpful place to turn to for information and support. http://www.cancercompass.com/message-board/caregivers/1,0,122.htm Tue, 18 Jun 2013 00:00:00 GMT Tue, 18 Jun 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi all, I was having a discussion with a good friend.  So that I don't impact the results of this, I'll explain the conversation after I get a bunch of answers here.  :)  I hope everyone replies and BEFORE YOU READ ANYONE ELSES' ANSWERS, PLEASE THINK OF YOUR OWN ANSWERS AND ANSWER HONESTLY.  Thanks!!  :) These 5 quick questions are just for caregivers (not patients, sorry) Also, when you write and answer, please JUST answer these questions and DON'T quote the original message (that way we can all read the answers quickly and easily)  xoxo thanks!!!!  Sarah   1) What type of cancer is/was your loved one fighting? (please don't abbreviate, half the time I have no idea what the letters stand for, lol) - please just say "Brain" "Pancreatic" "Stage 3 Breast", etc.. 2) On a scale of 1-10, how easy or difficult is/was your loved one's cancer battle?  (1 means very EASY and 10 means very DIFFICULT) - please just answer with a number from 1 to 10 3) How long has your loved one been fighting their cancer battle? (or how long did they fight before passing?) 4) What is your loved one's cancer/life status right now? - please answer one of the 5 choices: remission, still fighting & well, still fighting & unwell, hospice, passed/deceased 5) As a caregiver, knowing what you know now, if YOU develop cancer, what will you choose to do?  - please answer with one of the following 3 choices:  fight 100% until the end with chemo/radiation/etc, only use natural methods/homeopathic/naturalistic cures, or not fight at all and let nature take its course   THANKS SOOOO MUCH EVERYONE!!!!!!!!! http://www.cancercompass.com/message-board/message/all,72232,0.htm SarahGrey Sat, 15 Jun 2013 00:00:00 GMT I haven't seen her on the board for 2 days worried. I hope she is doing ok. just worring about her. Cathy http://www.cancercompass.com/message-board/message/all,72278,0.htm cb531 Tue, 18 Jun 2013 00:00:00 GMT I've been looking for a forum for a while and finally find this one.  I wanted to share my story.  My mom will be 74 next week, and has Stage 4 PC.  After reading all of the statistics and posts here, I feel very blessed that I've had my mom around for 4 years and 3 months.  Her cancer was discovered by chance during a liver checkup.  She had surgery, (but not quite the whipple), one round of preventative chemo and then we had "quiet" for about a year and a half/two.  Sometime after that, we saw her numbers start going up in her 3 monthly checkups, but there was nothing visible in her scans. It took many months till there was something visible, and by then, there was one lesion in her liver and several small in her lungs.  It was very frustrating to find out that you can't just blitz a person with chemo without actually seeing something. About 10 months ago, she started on Gemzar, then Gemzar and Xeloda, and then on Gemzar and Abraxane.  All in all, my mom has been super strong, just living her life, and most of the chemo was fairly effective.  Only in the past several weeks, my mom has suddenly taken a severe turn for the worse.  Mainly due to the increasingly large amount of ascites and with that, pain.  The pain is what really has "doomed" her.  With the pain came immobility, weakness, and deterioration.    Leaving out a lot of details but, to make a long story short, she is now at home, bedridden, being taken care of by my dad, me, my 3 siblings and her 2 siblings.  Thanks god for family!  She is stable at the moment, but it feels like possibly the end.  I'm so sad now.........she put up such a good fight.  We have not thrown in the towel yet, and neither has she.  In fact, it's not even clear whether she can actually admit to herself that she is so fragile.  I guess it is better this way, that she stays positive.  We are still investigating several options of having a permanent drain put in, or to give her added nutrition at a hospital.  She also has diabetes, so this complicates things.  Basically now, we are just sitting by her side, rubbing, massaging, talking and saying "I love you".  The most important thing, which I wish I would have known before, is that she would not be in pain, and that she is comfortable.  I kick myself that if we would have succeeded in getting the correct meds beforehand, she would not have deteriorated so quickly.  Anyway, thanks for listening.  I hope my experiences can possibly help someone else.   PunkyD http://www.cancercompass.com/message-board/message/all,72279,0.htm PunkyD Tue, 18 Jun 2013 00:00:00 GMT On may 31 I had an 8 cm cyst removed from my left ovary,My doctor had took tissue samples from the cyst and the gross descripition was 100 ml of cloudy red fluid,then the cytologic diagnosis was rare atypical cells,and cannot rule out neoplasm.So why does he want me to see an oncologist then http://www.cancercompass.com/message-board/message/all,72270,0.htm redblue39 Tue, 18 Jun 2013 00:00:00 GMT As hard as it is to be a caregiver .It is an honor to have the time to spend with your love one and take care of them . Just want to tell you make every day count it is a blessing I was so glad I told  Larry every day I LOVE YOU !!!  I give anything for one more hug one more kiss I give my own life for it. I loved him more than life itself. http://www.cancercompass.com/message-board/message/all,72258,0.htm BAILY Mon, 17 Jun 2013 00:00:00 GMT Please talk to me. I feel so bad!!!!!!!!! I will think of you as I go through my PT every time now. I love your cheer. Do you have like animals on your farm ,like cows and goats and stuff? I mean you know like the ones they have in movies. Ok here goes........you are my sunshine.....my only sunshine......you make me happy when I am blue....please don't take my sunshine awayyyyyyyyyyy!!!!!!!! Much love , Carolyn http://www.cancercompass.com/message-board/message/all,72272,0.htm Carolynbmaes Tue, 18 Jun 2013 00:00:00 GMT I hear some frustration today on the site and completely understand.   Some days, just some days, I am so hopeful about the future.  I am strong, I am courageous, I can handle it all.  Then other days I am weak, a crying mess, afraid and feel very, very lost.  My self esteem is nil.  When those days happen my mood is so very black I can hardly function, let alone reach inside myself to help others.  A few times I have hovered over my key board and say to myself, "I got nothin" On those days, in relation to this site, I am relieved to read how others are coping.  I gain strength and wisdom from their sharing and I just "listen."  On those days I need to take and can't give.  Sometimes I laugh out loud. It gives me hope when I read, "Hey, Kelly, where are you?"   It's kind of like AA, we need to share our experience, strength and hope.    I see those new babies out there and want to wrap my arms around them and give them a big hug.  So hang in there people, we all need each other!!!! Hugs to all.  Especially Oldgal and mg1957 today.  KellyC http://www.cancercompass.com/message-board/message/all,72017,0.htm KellyC Sat, 01 Jun 2013 00:00:00 GMT As you most know,my loving husband has pancreas cancer,a tumor in the head,after 30 radiation treatments and 5 months of chimo,the tumor is still shrinking,and all is good,this terrible disease hasn't moved anywhere like they think it might. . It's been 8 months since they gave him 6 months to live,so glad we went to ctca where they know what there doing. The next step might be to take out nodules in lungs so he can have the nan knife ,but we will have to see. Thank you for the comments about my husband,he just always sees the positive in life no matter what,I am the one that worries,but always trusts GodGod bless kathy http://www.cancercompass.com/message-board/message/all,72212,0.htm Kjohnchas Thu, 13 Jun 2013 00:00:00 GMT This is for the newbies out there...... We all start out in life/marriage/relationships, etc. with blind hope for good fortune and daydream about the great things to come.  It isn't ever in the cards to become a caregiver to a terminally ill loved one.  I, for one, when I thought about death at all, it was after a long and happy life, lying down to sleep and waking up in heaven.  Ah......great thought still.  I have been lucky to have had a pretty good 2nd marriage even though we are now going through his cancer battle.  It has been an intense 4 years with cancer and another 6 years with his heart condition.  As things decline it is certainly  the most painful thing I have ever faced.  I am terrified of what's to come. But....the absolute worst time was right after diagnosis.  The knowledge that everything wass radically changed was like a punch to the gut.  All my dreams and plans went right out the window and were replaced with a nightmare.  Often I had hope mixed in with sheer terror.  It was a bizarre mix of emotions and for me they cycled rapidly.  Then throw in anger and frustration.  I think I may have been a little crazy. As time and circumstance have progressed, occasionally I feel peace.  It is peace I am most grateful for.  When my soul is quiet and the storm stops raging, when I can forget for a minute......This is what I wish for you.  Hugs, KellyC     http://www.cancercompass.com/message-board/message/all,72265,0.htm KellyC Mon, 17 Jun 2013 00:00:00 GMT Softly, I will leave you softly for my heart will break. If you should wake and see me gone . So I leave you softly. Long before you miss me. Long before your arms can beg me to stay for one more hour or one more  DAY. After all the years .I can't bear the tears to fall so softly . As I leave you there.   http://www.cancercompass.com/message-board/message/all,72261,0.htm BAILY Mon, 17 Jun 2013 00:00:00 GMT My girl my dear dear friend will soon not be on caregivers site anymore. Her time here will be over! She has been such an inspiration to us all. I use to say SarahGrey is all over the place I could not keep up with her,smile .why? Because she was always trying to help others with as much knowledge as she knew on brain cancer as well as just being a friend to keep others going. Wow what a special person she is and has been to all of us.!!!!! SarahGrey and I laughed cut up , and had some good times here. Damn she got me out of trouble so many times I will be lost without her. She made me actually laugh out loud while looking at a computer screen , she was and is and will always be a part of my soul. However I know she must move on because she must begin to find peace and the other site is just as amazing as this one. SarahGrey our dear BAILY is waiting for you . You have been quiet and that is ok because this is your time ,the time to be with your beloved!!!!! I love you SarahGrey and always will you have touched me in ways I will need to continue on my caregiver journey. Much Love Always, Carolyn http://www.cancercompass.com/message-board/message/all,72178,0.htm Carolynbmaes Tue, 11 Jun 2013 00:00:00 GMT I must have like a secret place my messages go.....like taken away QUICKLY by cancercompass lol lol. After all this is Carolyn and do I need to say anymore????????? Kathy I love you girley and I am soooooo sorry about your husband. I will be praying for him. You have a man there that has been so kind to you . Now I will go shave my legs because I am still hoping PT will take it easy on me if I look sort of nice. Smile ......Mavcav you would be so proud of me. I am taking the pain baby ,walking through the fire,and I will NEVER allow myself to get like this again trying to be a caregiver to my mean husband!!!!!! I WILL get strong again, now lets play some football I am ready!!!!! Smiles, Carolyn. Oh ps....... SarahGrey I loooooooooooove youuuuuuuuuuu and missssssss you . I must hurry so I cannot sing to you tonite!!!!! http://www.cancercompass.com/message-board/message/all,72245,0.htm Carolynbmaes Sun, 16 Jun 2013 00:00:00 GMT Ok SarahGrey I took care of that for you . I mean just answer the damn questions. It's not like you are NOONE on this board!!!! You are the president of this board. And KellyC Vice President. And me the cook!!!!!!!!! NOW PEOPLE ANSWER THE QUESTION it's not a difficult task I promise. Now I said my peace!!!!!!!!! Thank you all very much !!!!!!!!! http://www.cancercompass.com/message-board/message/all,72235,0.htm Carolynbmaes Sat, 15 Jun 2013 00:00:00 GMT ugh, it seems like the same few people post new messages on here (i think i do about 20%..., lol).  i'd love for anyone new, who is just coming here and reading, to share their stories! anyone?...  hopefully everyone feels welcome here and feels safe and comfortable to post - since you can be totally anonymous.  that's what's great about here.  you can say things that you probably feel you cant say to close friends and family because they simply won't understand or you feel they might judge you... personally, i dont open up to close friends and family because i dont want them to know how hard this all is for me and how much it's killing me inside (watching my husband suffer and slowly decline, when i can do nothing to stop it...) also, perhaps i'm looking for new members, because the more people post, the more i have to read and the more i am distracted from the reality surrounding me... all the best, sarah http://www.cancercompass.com/message-board/message/all,72016,0.htm SarahGrey Sat, 01 Jun 2013 00:00:00 GMT Hi there, I've been caring for my fiance for a little over a year since he was diagnosed with a pineoblastoma. He has a lot of cognitive and mobility issues. It has impacted our quality of life quite a bit. He's only 29, and I'm only 27, and our lives are much different now then they used to be. A few weeks ago he was diganosed with a recurrance of his tumor. We are trying Avastin, but none of the doctors we have seen are too optimistic. I am having a hard time sleeping, working, and just functioning in general. People have been giving me much unsolicited advice to talk to my doctor about some sort of anti-depressent. My question is, does this really help? To me, I don't see why I would bother, it won't fix the problem (which is the damn brain tumor) so why try. Do they actually help anyone? Thanks, Nicole http://www.cancercompass.com/message-board/message/all,71995,0.htm newlandnic Thu, 30 May 2013 00:00:00 GMT My husband decided to stop treatment.  After the new research came out last week about Avastin basically being ineffective for brain tumors, our doctor stopped that treatment.  My husband has been feeling like crap.  So exhausted.  I think I mentioned before that I found him crying.  We have had several long talks where he said he wasn't happy but he didn't want to die yet.  I just sat and cried with him.  He is just so exhausted.  I know that it's just a side effect of the medications and that he just has to deal with it and push through.  But it's not for us.  We want to enjoy his time left.  He wants to get to feeling better, if that's even possible after being on chemo for 6 months.  But I felt a huge weight lifted off my shoulders once he made this decision.  He made it of his own accord.  I don't feel that I or the doctors or anyone pressured him to make this decision.  I asked him if he could live another year like how he feels today and he said he didn't know.  It's the worst watching the one you love suffer.  And it's such a grey area when they aren't in pain but yet are so exhausted they don't even enjoy doing simple things.  I know in this journey, there are no right answers.  There are options of clinical trials and other things, but that just isn't ideal for us.  I know it's hard to digest and in our society everyone wants you to fight till the death, but as my heart breaks, we both are enjoying our time more, without all this chemo and meds hanging over us. I know as caregivers, we have tough decisions, and this has been the hardest.  He told me the other day after he talked with our pastor that if he died tonight, he would have peace with his decisions.  I felt, if nothing else, that gives me peace as well.  I know this cancer isn't quick or nice.  And he may not pass soon.  But I know that we've done as much as we could.  Now it's calling in hospice and waiting to see what happens. http://www.cancercompass.com/message-board/message/all,72119,0.htm Glitzy1294 Sat, 08 Jun 2013 00:00:00 GMT hey folks, sarah grey here, reporting bedside at a hospital tonight.  my husband had a seizure today (sigh) and theyre monitoring him overnight.  hopefully just one night.  we couldnt get a private room and his roommate has an awful AWWFUUUL diarrhea problem and the smell is absolutely foul.  he's gone 5 times in the 7 hours we've been here.  yes, im counting.  this simply cant be healthy...  i dont care about myself so much as my husband.  this is FOUL.  im seriously about to throw up...  oh, as a bonus, this guy insists on watching tv (nurse finally just turned it off) and when he cant find the call button, he SCREAMS 'nurse!'.  omg...  wishing everyone a lovely night!  :) http://www.cancercompass.com/message-board/message/all,72121,0.htm SarahGrey Sat, 08 Jun 2013 00:00:00 GMT I think my picture post is so pretty and pink and bright. It just stands out..........right Sarah Grey? Where it Kelly C????????????? Much love, Carolyn. Ps . Going back to sleep , something is wrong with me. Blood test waiting results....... http://www.cancercompass.com/message-board/message/all,72127,0.htm Carolynbmaes Sat, 08 Jun 2013 00:00:00 GMT When life knocks you on your knees,you're in perfect position to PRAY!!!!!!!! I always believed you get out of something what you put in. Everything takes work to succeed. This is an adult site for very emotional caregivers . We should and have said exactly how we feel. That is what a forum is all about. I have grown tired and weary . But I will listen to a caregiver who said I must sleep and take care of myself. I think to the people I have apologized to and have not accepted my apology to me that makes me sad! However when your dealing with a very sick spouse all this anger towards me is small potatoes. You see God knows my heart and I will and have always tried to help others. I mean how angry must a person be to not accept an apology!!!!!! This is CANCER we are dealing with. This is not a game , this is our life, our pain, our confusion. This site sustains me !!!!!! I will at this point NOT dwell in the posting I made earlier but move forward as I should. Thank you to ALL caregivers who show me such kindness and may we all have a better tomorrow . Carolyn http://www.cancercompass.com/message-board/message/all,72033,0.htm Carolynbmaes Sun, 02 Jun 2013 00:00:00 GMT My wife is 18 months out on her Glioblastoma brain tumor journey. In the past 4-6 weeks there has been a steady decline and more so in the last week, particularly yesterday. It showed me what I'm up against and !'m questioning myself. The next MRI is tomorrow and we are both worried that there may be progression. Today for the first time my wife acknowledged that she understands her prognosis....she has been in denial. I believe once she let it out and overcame the emotional release she felt better. So as for tomorrow, I'm hoping for a clear MRI but in light of the past few weeks I'm expecting there to be something going on. Please keep us in your thoughts. http://www.cancercompass.com/message-board/message/all,72091,0.htm bill1958 Wed, 05 Jun 2013 00:00:00 GMT My husband was dx with GlioblastomaIV mid Feb '13 and did radiation and temodar and did well. Then 1 week before finishing he had a large abdominal bleed due to also being on a blood thinner ( Xarelto). He has been in and out of hospitals twice and is now in a rehab that is really just a nursing home with rehab. It is nice and the people are fine but it is a very depressing place. At one point he had 4 litres of fluid drawn from his abdomen. Also some brain swelling and now he is back on decadron at 4 mg a day. They did reduce his Keppra to 500 mg twice a day. He also has heart issues like Afib and Aflutter so he also takes heart medicine.   He barely ate for 5 weeks during all this and is so weak now he can barely move. A NG feeding was finally put in him about a week ago, but I have seen no improvement. He still barely eats. He wants to give up and just die and while I respect whatever his choice is, I can't help but feel he could get stronger if he would just eat and try to do the physical therapy. He is only 68 and was in great shape physically before all this. For depression he was on 20 mg of Celexa but has been switched to 10 mg of Leapro (sp) which they will increase in a week. I get frustrated that he justs wants to give up after a really good fighting attitude in the beginning of all this. Then at other times I get so sad that I know I will lose him soon. We have been married 27 yrs. Also it takes two people to shift him in bed and to get him up. He fell the other day (thankfully was not hurt) and it took 2 people to lift him. He uses a urinal and needs help getting into a wheelchair to get to the toilet for the other. He wants to come home, but I am a slight person and cannot possible lift him if he fell or maneuver him in bed if he had an accident. But I feel so guilty that I can't bring him home. My friends and family say there is no way I could care for him at home.I could get homehealth care or hospice but they only come 3 times a week. He urinates at night about every 2 hours and before when he was home, I was only getting minimal sleep. I feel so tired and drained. Even now I have to take a sleeping pill to sleep, so I don't think.   Paid CNA care is as expensive as a Skilled nursing place that medicare will cut off after 100 days and the 100 days are only good if he shows improvement. He simply answers my questions with " It doesn't matter anymore."   Any thoughts would be appreciated. I don't want to lose him, but I'm growing so weary. And the financial realities really scare me. We do OK but are not rich.       http://www.cancercompass.com/message-board/message/all,72094,0.htm marysch Thu, 06 Jun 2013 00:00:00 GMT In recent years, there's been an explosion of life-saving treatment advances against breast cancer, bringing new hope and excitement. Instead of only one or two options, today there's an overwhelming menu of treatment choices that fight the complex mix of cells in each individual cancer. The decisions — surgery, then perhaps radiation, hormonal (anti-estrogen) therapy, and/or chemotherapy — can feel overwhelming. for more details visit on our website==>http://chroniclesofacancersurvivor.com/     http://www.cancercompass.com/message-board/message/all,72096,0.htm Linda_Smith Thu, 06 Jun 2013 00:00:00 GMT Hi all, We're going home from rehab soon and a family member will be staying with us. I'm not much of a cook and my husband and I always ate simply, would order out a lot, etc... Now I'm going to have to do some cooking! (Oh goodness). Lol Anyone have any simple, healthy, and easy ideas for meals? I've come up with ziti, chicken parm, spaghetti and meatballs... Hmmm maybe we'll just do a lot of ordering out... ;) Any ideas are appreciated, thanks! (Nope, we don't have any kids - never wanted them because they're too much work, lol, hopefully the houseguest won't be more work than help!) ;) PS - again, the whole idea is EASY and quick food. I don't have time or energy to be cooking all day... Oh, and easy to eat food since my husband basically just has use of one hand. Yes, I know spaghetti is difficult to eat (but not if you cut up the pasta small!) ;) http://www.cancercompass.com/message-board/message/all,72077,0.htm SarahGrey Wed, 05 Jun 2013 00:00:00 GMT Well yeah... My husband has gone physically downhill very much in the past few months. Yes, medications started the downfall but the neuro-oncologist stopping chemo for a month didn't help - as the tumors grew... Within the past few days, I notice his memory is starting to get worse... Part of me wants to think it's again, just medications but... Too many negatives are just adding up... I can't give up hope but... I think I need to be realistic as well... Hey, at least we made it to one year. That beats the average... Again, I'm not giving up hope but... My heart is breaking... And as it thunders outside, my tears fall... http://www.cancercompass.com/message-board/message/all,72044,0.htm SarahGrey Mon, 03 Jun 2013 00:00:00 GMT As you all know I am a caregiver to my mom with PC and my husband with Lypo sarcoma.  A friend I use to work with contacted me last night her husband found out a month ago that he has Lypo sarcoma in the lungs and he past away last night!! It was so fast very scary and very sad for her they have a 5 year old little girl.  I got off the phone very upset and told my husband everything he was in shock and was upset thinking of himself of course he died of the same disease as my husband only his was in his lung my husband in his leg. I don't know why I did that!! He would never have know I could have said a nother dx what was I thinking!!!! So upset couldn't sleep last night. http://www.cancercompass.com/message-board/message/all,72009,0.htm cb531 Fri, 31 May 2013 00:00:00 GMT