6 yrs post diagnosis and still hanging tough
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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 >
Hi Rob, I am a caregiver looking after my husband Doug as we face the final stages of stage 4 cc. I understand when you say it is hard to put one foot in front of the other. Just yesterday my daughter asked me how I do it and stay strong. I told her I am not always strong and I do it for love; for better for worse through sickness and health, till death do us part. He would do the same for me if the roles were reversed. This is the toughest journey we have ever been on and we try to take one day at a time. We try to laugh each day and hold each other close. Doug choses not to talk about his illness and that he faces death, so we don’t. I too understand about the thoughts and fears running through your head; sometimes I think I might go mad, so I push the thoughts out and go back to living day to day. There are too many of us out here fighting this disease. We will continue to fight until the day a cure is found and no one else will have to suffer the way we do. Fighting with you in Revelstoke B.C.
NancyHi Rob,
You sound like you are a great care giver. I’m sure your wife knows how much your love and care has gotten her through these past six years. My husband was diagnosed a little over 3 years ago with intrahepatic cc. He went through surgery and had 70 percent of his liver along with his right kidney, gallbladder, part of stomach and part of colon removed. He was already Stage IV. After seven months, he had multiple tumors in his liver. His last scans did not look that good but he started back on chemo 8-26-11. He’s on gemzar/cisplatin/avastin. He was supposed to get another treatment last Friday but his counts were too low. They gave him a neulasta shot and will give him avastin this Friday, and hope to give him the gemzar/cisplatin next week if counts are up. He has been in a lot of pain from the neulasta shot and has been very weak and tired since restarting chemo. Yet, he keeps on going. I have to admit that he has been more stronger than me during these 3 years. I pray that your wife will feel better soon; she sounds like a real fighter, and I hope she will rebound and continue to fight this horrible disease. And I know that you will be there fighting for her. Keeping you and your family in my prayers, PeggyP
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
BB……my heart goes out to you as I know too well how difficult the situation is for you wife, her daughter, and for yourself and for everyone close to your family. Too many of us have been down this road!
What I have found is that things just evolve. Although at present your wife is not receptive to enlisting extra help the time may come when her decline necessitates additional support at either your home or in a hospital setting. BB, you are a wonderful, caring, and kind husband, but you must also take care of yourself. This prompts me to repeat one of the most cherished advices offered to those caring for a loved one.
I have the right:To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my loved one.
To seek help from others even though my loved ones may object. I recognize the limits of my own endurance and strength.
To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do some things just for myself.
To get angry, be depressed, and express other difficult feelings occasionally.
To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.
To receive consideration, affection, forgiveness, and acceptance for what I do, from my loved ones, for as long as I offer these qualities in return.
To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
To protect my individuality and my right to make a life for myself that will sustain me in the time when my loved one no longer need my full-time help.
Author unknown:
The National Cancer InstituteMy heart and thoughts are with you.
All my best wishes,
MarionDear BB, my heart is very heavy right now thinking of you and your beautiful wife. I am so glad you had a wonderful break in Jersey. I am wondering if you could approach the Hospice subject by telling her Hospice does not mean the end but rather is a helping hand to the both of you? if she doesn’t like it she can quit and start again anytime. It is understandable that you both have fears right now but I am wondering if you discuss “things” with each other. Teddy and I found that by being very open and talking we had better attitudes and more strength because we were working it together. Also please feel free to keep posting as it really helps, it is what got me through Teddy’s journey. We care!
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
Rob: I am inspired by your wife’s FIGHT with this cancer. And from reading your post I sense that you both have certainly endured a lot… much, much more than a person can put down in words. YOU are truely a treasure to your wife and daughter by providing un-ending strength and love for them.
My husband had his Whipple 06/23/10 for extra-hepatic bile duct cancer followed by 5 months of chemo and 25 radiation treatments. Now, on 08/16/11 we were told of cancer recurrences x 3 in the surgical bed area. So he is once again in chemo. Although we’ve only dealt with this cancer about 16 months, I pray all the time for God to strengthen me in mind, body and soul, and that I will go above and beyond in caring for him. And although sometimes hard to do, I have to tell myself at the end of the day (so I can put my mind to rest) that I’ve done all I can do for that day…that I need to try and rest now so I can begin a strong FIGHT again tomorrow.
You have a priceless love for your wife and you are such an inspiration! Just know my prayers are with your wife, you and your daughter, and God Bless. I thank you for sharing.
Rob…..in no way did you paint a negative picture. Sue has been heroic in fighting this disease for many years now. It is only natural for you to be reflecting on the past while simultaneously anticipating the possibilities accompanying her disease progression. I have learned that whenever life stretches us physically or mentally greatness is not too far off. The love, tenderness and admiration you have for your step daughter may never have happened had it not been for Sue
Dear Rob, what a warm and thoughtful post. I think your beautiful wife has already shown so much hope, 6 years in CC years is like a lifetime. What a brave warrior she is and her fighting spirit is to be commended. Not to mention she has one of the best Caretakers around! How wonderful that your Daughter has bonded with you so well. I am sure that when you need her strength the 2 of you will be an awesome pair.
This is the time now to create some more wonderful memories and make this your precious time. None of us know when our time has come but I found with my husband that we valued the time we had together and did lots of family things and laughed so much and honestly people thought we were on a honeymoon! At least that is what he told them.
If your wife reaches a point where you think she is getting too anxious her doctor will give her something for that. It does happen. I wish you all the best and please keep us posted, we care.It has been a while since posting , my wife Sue was diagnosed in june 2005 , had more than half her liver removed only to suffer reoccurence 7 months later 3 surgeries and 9 different courses of treatment later here we are just back from a 4 day stay at U of Penn . cancer has progressed to peritoneum along with pelvic area and kidneys along w clusters near or on liver. She had her kidney stented only to suffer from much pain and bleeding . I forgot to mention she was 43 yrs old when diagnosed . How she manages on a daily basis is beyond me , her illness has progressed to th epoint where she has to have fluid drained from her abdomen weekly. Her anxiety grows as each day goes by, she has began to lose weight {she actually gained weight after she got sick and was always the healthiest person on the cancer floor} I have seen posts with many similiarities as our situation that one has with a long illness . Every time we go to the hospital or she has a bad couple of days I wonder could this be it for my beautiful wife? Well I hope I did not paint a negative picrture , I am and will forever be grateful for the last 6 yrs , I have been able to develope an unimaginable relationship with my 15 yr old adopted Daughter who has so far dealt with her Mom’s sickness with grace and dignity. She is sometimes the lone bright spot in my day. Hope to hear from some of the long time survivor’s caretakers . I need some HOPE Thanks BB
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