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Dear Pam – What a blessing that your dad went peacefully and with his loved ones at his side. I am so sorry for your loss. When you have shared your life with someone wonderful, it is so difficult to say goodbye. I am sure that the strength of his love will carry you through the days ahead. When grief washes over you, accept it as a visit from your loving dad and give him the time needed to experience the grief. As you know, it ebbs and flows. My thoughts and prayers are with you and your family. Blessings, Susan
Thank you both so very much. Since his pain is increasing, he will be more open to help with managing the pain. It is so helpful to hear of other people’s experiences. Except for this board, people cannot really understand what we are going through. You are invaluable and I appreciate you so much. This morning my husband said that he made our grandson’s first birthday and his next goal is our wedding anniversary (#28) on November 27. Thanks again. I think I will be calling hospice tomorrow along with the doctors. Thank you again. Blessings, Susan
Thanks for all your words. We are calling the oncologist tomorrow. I am not in favor of radiation as we have been told by at least 3 specialists that he is only a candidate for palliative care. I think he is grasping at any possible treatment. I think our oncologist can explain some things to him so he feels he has had a good explanation. He forgets a lot. He is feeling a little better today. I have kept him from driving for the most part. I think he needs the doctor to tell him not to drive as if I do it, he says I am overreacting (which I am not prone to do). I hope to accomplish a lot tomorrow in contacting doctors, making appointments and hopefully getting some things in place. I would welcome some hospice at this point, but not sure my husband is ready. Not sure if he will ever be ready, but I will contact them again for my own sake. On tough days, I don’t think as clearly as normal. Thanks for being blunt, honest, open, upfront, and most of all so caring. Thanks for being part of my life as we walk this difficult journey. I feel so blessed to have this place to share and get feedback. Blessings, Susan
Grouchy visits at our house too. So much out of control and so many unknowns. Hang in there. We’re all human and love overlooks a multitude. Blessings, Susan
Lainy – Thank you for your words of encouragement. We have talked to hospice, but were waiting for insurance that finally came through. Now he is wanting to at least talk to City of Hope about the potential for radiation to shrink the tumors. He has been throwing up more in the past week and today hasn’t been able to keep anything down. He is nauseous (we have meds for that), weak, in pain (we have meds for that) and dizzy. He says he thinks the end is soon, but I wonder if that means he is just scared and tired of feeling bad. I can see that he is declining, but I think you were right when you said he is spending so much time and energy trying to be normal. I have always said that he will push himself and probably not linger long. It’s just the way he is. I love him and hate to see him suffer and hate the thought of losing him. Also, it is so hard just not knowing if we are on a steady decline or on the roller coaster. If we do not get a good response from City of Hope, we will consider hospice. He is having trouble maintaining a consistent body temperature today – hot then cold. He is losing weight again at a fairly rapid rate. He was happy to live until our grandson’s first birthday (yesterday) and the party today. He came out of bed for 5 minutes and greeted everyone and has been in bed since. I think I told you he spends all his time at home in bed. When he gets up, he usually runs a short errand. I am afraid to let him go out alone because he is so dizzy and is falling. He uses a cane at home and a mobie cart when we go out. I’ll let you nkow how he does over the next few days. Thanks for listening. While I have lots of support, I don’t want to worry our children or make it sound like I’m so depressed. I am able to cope because of the support, my faith, and that we have some good days.
How is Teddy today?
Blessings, Susan
Dear Lainy – So glad that Teddy is loving his bed. It has sure been a blessing for us. I really have no idea what stage my husband is in (I know his cancer is stage 4 but I am talking about how his body is at the functional level) and it is so hard trying to piece it together. He has been in bed more than ever, he is very pale, he has begun vomiting at times and this week, his balance has gotten so poor that we bought a cane and he fell twice on Thursday just moving from the bed to the restroom. We spent time out today with our family, but he struggled the entire time. He is definitely getting more pain and tenderness in his liver area. Then, thankfully, he might take a good turn and get some energy for a few days or a week and then be back in bed. I think he is declining and we see changes, but every change seems to become the new norm and it is hard to assess how he is really doing. The doctor said he looks better than he expected. We have had experts from UCLA and City of Hope tell us the only option for my husband is palliative care. Sometimes when I read of all the surgeries that others have gone through, I respect their fight, but I wonder if it is worth all of that. It seems for every good turn there is at least one or two bad that follow. I am not depressed or pessimistic, but I work so hard trying to figure it out, treat my husband well, respect his wishes (whatever they might be), and still am not sure where we realy are in the overall process. I definitely think we are losing ground – I guess I just don’t know if it is as expected or changing rapidly or slowly in comparison to the average. Maybe there really is no average and everyone is different. I hate to lose him and yet, we are losing him a little day by day and some of his best attributes are rarely ever seen now. Such a terrible loss. As to fentanyl vs. morphine, I think that we will graduate to morphine, maybe sooner than later as the fentanyl isn’t holding as well as it used to and we have upped to dosage once already. Thank you for your words of encouragement to me and to all of us on this site. Blessings to you and Teddy, Susan
Dear RDH – It sounds like you were one of the luckier ones to have received a diganosis a little earlier before a lot of spread and treatments are available. So happy for you as this is not the case for so many with cholangiocarcinoma. Our thoughts and prayers are with you as you take this journey. Visit with us often and let us know how things are going. Many have said, and I have found it to be true, that this is often a roller coaster ride. Blessings, Susan
Lainy – My husband has back pain, but it is located higher up nearer the base of his neck and shoulders. Could be mets, but that is not confirmed. My husband says that the adjustable has saved him. He is so comfortable in, can change the settings and it vibrates which he says is a godsend. He also has constant tenderness in his abdomen despite being on Fentanyl 75 mcg. We augment with Vicodin when needed. My prayers to you and Teddy. Blessings, Susan
Dear Terry – Nothing can be so devastating as what you are going through. It is just so hard. All the things you have to take care of that were not your responsibility and life has the gall to keep going on AND adding to your load. Remember the good years you had with Wayne and the strength you could draw from him. Even though he is not here, he would support you in every possible way if he could. As hard as it is, let your grief come. It will gradually become less acute pain and you will make it. Keep posting, keep writing, keep getting those feelings outside of your body so you can survive. Know that people care about your loss. We are facing the type of loss you have recently suffered and I pray you will be around to help me when my time comes. I don’t know how to go on without my husband and I’ll be looking for your posts. I am praying that God will bring you peace. Blessings, Susan
Janet – My husband is 58 years old and when he was diagnosed, they told us he was stage 4, too advanced for anything but palliative care. He underwent 3 rounds of chemo (6 treatments). They told him in August that he had about 90 days. We are at the 90 day point as of today and he is hanging in there. He is quite weak, sleeps a lot, is in bed most of the time, but on good days he can go out of the house for awhile. He eats although not so well at times. Today, for the first time, he fell twice just getting to the restroom and back. He says he is just weak. He has a pain patch but still gets some pain or even tenderness in his abdomen. Keep being an advocate for your mom and know that we are with you. Blessings, Susan
Dear Jtoro – My husband was FINALLY diagnosed in early August and given 3 months. He is still going out on many days. He suffers from weight loss, shakiness, swelling, some pain, food not tasting good, poor memory and concentration, and many other things. We take comfort and hope from the fact that he goes out shopping (he rides a scooter) and some days can be up for several hours. I don’t think we will lose him in the very near future, but each day is a surprise and a roller coaster ride. It seems that hope is the greatest factor in his ability to do things. I really think he will be active until near the very end. He pushes himself pretty hard. Best wishes to you and your family. Blessings, Susan
Dear Devastated Daughter – With my 2 year old granddaughter, we play pretend games that include Papa’s name. We look at pictures and talk about fun times. We make up once upon a time stories that talk about the child’s experiences with Papa. Sometimes when Papa isn’t in the bed, we lay on his side of the bed, hold hands and watch Mickey Mouse. It is very hard when the child is so young, but my granddaughter thinks she even knows my Aunt Dee (who died when our 2 year old was 6 months old) because we play these games and look at pictures. Sometimes she will carry Aunt Dee’s picture to a room where we are and tell the picture to “sit right there.” I take comfort in knowing that our granddaughter can connect in some way to her family members who are not here either by hospitalization or even permanent loss. I hope this helps. Blessings, Susan
My heart goes out to you and your family. In time, good memories will replace these difficult ones. May you find peace and comfort in the years you have shared. This is such a difficult walk to make, but your Tad had you there to love him till the very last breath. God bless you for that and may His peace engulf you as you face the days ahead. Blessings, Susan
Dear Manish – Chemo treatments are different so it depends which one the doctors might recommend. My husband was on Gemzar for 3 cycles, which is 6 treatments. He had no ill effects. He has had no surgeries as he has been told they are not an option for him. His liver is completely involved with innumerable tumors. With Gemzar, my husband had no nausea, and no hair loss. He was weak before chemo started and he is still weak. He slept a lot before and he sleeps a lot now. He still eats most foods although he says most taste bitter. We have to watch his salt/sodium intake due to ascites. Our prayers and best wishes are with you and your family. Blessings, Susan
Dear Andie – I relate so well to your anger and frustration and the roller coaster ride that isn’t any fun. There are days that I think I can’t handle it anymore and days that I think when he’s gone I’ll pray for a day to have to handle it again just to see his face or hear his voice. Sadly, his personality has changed and he isn’t the same person most of the time. Perhaps it’s the medication for pain, but he had changed even before that. I am used to a loving husband who treated me well and considered my feelings about things. That man is not with us much any more. I miss him and have had to grieve some losses already. On days when we get a glimpse of the man he was, it is a day for rejoicing and celebrating the life we have shared. We are trying to take one day at a time, but it is so hard because we are a little afraid of what the next day might bring. Hang in there and come back often. Hugs and blessings, Susan
