robjbeave
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Hello all, quick update, my wife Sue continues to suffer mentally and physically , she battled for 6 and a 1/2 yrs and cannot believe the end may be near , hospice has been wonderful in taking care of her needs but she still refuses help in the bathroom . Very proud and stubborn, I knew that ten yrs ago when we got married so no surprises there. I am home with her 24 ,7 with a few breaks but feel that is where I belong . Thank God we have been able to control the pain for the most part but the heavy doses leave her out of it with some hallucinations , all part of the process I guess . I pray for a peaceful ending , Thanks for a forum to express our thoughts BB
Hello All, Thank God for hospice care !, it was a difficult call to make but since all other options have been exhausted it was our only choice. Sue has been kept comfortable for the most part but is still reluctant to let anyone shower her or assist her in the bathroom. My beautiful wife is still very worried about her appearence and knocks herself out to be presentable even if it exhausts her. How she pulls herself out of bed each morn amazes me . She s still getting drained every other day and losing weight . I justwant her at home and comfortable . will keep you all posted . I have a feeling she ain’t giving in yet ! BB
Hello Kris, sorry to hear of all your troubles . You sound like a battler, God bless you Do you live near Phila ?
Hello All , have not written in a while but I have continued to read all posts. Unfortunately my beautiful wife Sue is after 6 1/2 yrs , starting to lose her battle . No longer able to endure any more protocols or experimental treatments [at least 9] she has continued to be drained only to have a drain inserted 2 weeks ago. Very sad to sit with your spouse and hear “we have no more options for you ” only to hear her reply ” but I don’t feel like I am dying “. Hospice has been called in to keep her comfortable and I have to say I am relieved. I am on leave of absence from work and although the fear and tension level can be high at times I would have it no other way I am trying to stay in the present an d be grateful for whatever time remains. she is sleeping more ,eating less and becomming more confused. Only God knows how this will end . I will try to leave it in His hands >
Ladies, I was hoping to hear from the two of you and I was not let down. I read your thoughts early this morning and got some renewed hope. Some days it is hard to put one foot in front of the other . My wife also felt well enough to go to the Phillies game tonite although she was in a wheelchair. I hope to hear from some other long term caretakers as this roller coaster can take it ‘s toll on all Thanks again for your encouragement BB
Hello All, just read most recent post from appreciatehelp and I am grateful for the nice comments. Since I last wrote my wife could not tollerate stent and after 16 agonizing days had it removed . She got some relief initially however her situation has grown much more complicated and we were told she is too weak and with the build up of fluid {despite being tapped weeklly} in her abdomen and legs along with feet she is not doing too well. Doc explained that they will continue to keep her comfortable as possible . I cannot explain the feeling of hearing and watching my beautiful wife being told that she was out of options . When asked if she would like to have home nursing come in her response was” I don’t need that yet,” and she bristled at the subject of hospice . As each day goes by her spirit dims a little more . I am thrilled that we got to spend a few days at the Jersey shore just sitting on the deck of my brothers’home and watch the boats on the bay . I actually got to see her smile which reminded me of her ability to light up a room when she would walk in. Many thoughts and fears are running thru my head as I am sure go thru hers. I continue to pray to God that I can be accepting of His Will not mine . Thanks for allowing me to post my thoughts and experience in a fo um where people share a common bond , many suffer who never have a voice or recieve any encouragement. this forum allows experience , strength and hope . which we all need on a daily basis . All thoughts and comments are welcome thanks again . BB
Hello Jeand, just read your post and the thread, good to see positive news and people still fighting . my wife Sue was diagnosed in 2005 , more than half of her liver removed along w/ other parts only to come back 7 months later in pelvic region. several surgeries, hospitals and too many protocols to list later she is still giving it hell almost 6 yrs later. she now has at least 13 measurable tumors in her torso and pelvic region and is to start Tarceva and be scanned in a week. She is as I write this in Palm beach w/ her girl friends. Only GOD knows what the future holds and had you told me 5 yrs ago she would stillbe here I would never believed you , She has been able to see our 14 yr old daughter mature into a beautiful young Lady . Sorry to ramble , from time to time I post on here just to remember how lucky I am . I read the forum every day and I see much pain and suffering along with GREAT strength. Good Luck GOD BLESS
Lainy, God Bless You and Teddy, The pain you describe sound s very similar to the ones my wife has.She is still ambulatory but also needs much rest when she has been out . I read your words and my heart feels heavy and I hope and pray that you both get some relief. Your kinds words of encouragement to others gives us all strength, and I hope you can find some comfort in this difficult time. Sending many prayers YOUR way . Bob B
Hello jadams, soory you had to find us. Look up Dr. Paul Wissell at U of Penn , Not a miracle worker but very compassionate and knowledgable, my wife doctored w/ him for a couple of yrs. also great patint coordinator. Feel free to contact me for more info. My wife has battled this bastard for going on 5 1/2 yrs. and we all here know the feeling of devestation , GOD BLESS. BB
Hello rollem , sorry you had to find this board. My wife has been on this chemo a couple of different times and had very good success in keeping her 12 to 14 peritoneal implants at bay for a number of months. But unfortunately like w this cancer it found a way to start growing again. However after several other treatments ( too many to name ] she is back on Nexavar again as she is running out of options. Sorry to ramble , Our insurance Medco has a special group [Acrido] which dispenses this med by mail , and your right it isnt always approved because it is not proven for CC but it has worked for my wife before and we are pinning our hopes on it again . also she has since gone on Medicare since she has been out of work and on SSD and they have continued to pay for it. I do not know if I answered your questions but I know this med works for some . God bless you and your Mom
Lainy, great stuff , you are able to put to paper things I feel and think on a daily basis. I have kept up w/your postings and gain strength to carry on as this has been a long and rewarding 5 and a half yrs. for my wife Sue and my family. Keep your faith , Teddy and you are in my thoughts daily . Bob B
Lainy, Your courage and compassion come through in your posts. You and Teddy are in my daily prayers. Many people gain strength in your experience and I can only pray that I will handle myself with such grace as my wife’s illness progresses .
Kevin , i have read many postings by Kristin and even encouraged my wife to contact her since she has been battling just a little longer [ since 2005] . when reading your post my heart sunk, then reading Lainy’s posting and seeing the similarites between my wife’s and her husband ‘s condition I am dumbfounded. My prayers for you and your wife . May you both have the strength and courage to accept and carry out HIS will.
Claude , You are not alone, as I write this my wife who is 49 and has had cc for over 5 yrs [ i can;t believe it as i write it ] is now today starting her 8 th yes 8th course of some type of chemo. history too long and complicated for post however tumors [13 of them ] have all grown aggressively in past 2 months. I have also rode the roller coaster of emotion like many others and some days can not believe she is still w / me and other days fear raising our 14 yr daughter alone . Some may say and I know I am fortunate to still have her w / me , but watching your beautiful wife suffer day in and day out can be very draining and confusing on some days. The drs have no data to treat and at this point are just throwing whatever chemo they think might slow it . I pray for you and your father because at some point that is all you can do , my wife is in GOD ‘S hand and believe me I am not a very religious person but I do know what it is to be powerless. GOD Bless
Marrion, Gavin , Thanks for the welcome and interest. We are going on 5 yrs and are grateful and weary at the same time. As you guys know the few chemo drugs that may work only do for a short time. Peritoneal implants are growing and she is beaten down and at this point is saying no to treatment . However knowing her and the fact that we have a 13 yr old girl at home I won’t be surprised if after a short time she doesn’t go back on something . well thanks for the info and I will continue to post as I learn more . BB
