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Dear Cedar – Hospice is a godsend because with them, you are not alone. They are on call 24/7 and they are so supportive to your loved one and to you. We had hospice for 3 1/2 weeks and wish we had them longer. They managed the pain so well. One day when Randy wanted to drive the car (and he was on too much medication to do that), I called them and a wonderful nurse came over and said, “Ok, Bud, what’s up with you?” He loved it. She wrote him a note and made him read it over and over saying, “Mr. Little, you may not drive the car. You could hurt yourself or someone else. DO NOT DRIVE.” It was so funny, but she managed him in a way I couldn’t in the moment. We are so thankful for hospice and the fact that they made him so very comfortable. Our thoughts remain with you as you face these difficult decisions. Blessings, Susan
For me it’s the pool. I have absolutely no idea how to take care of the pool. Sure, it’s nice to have, but even when Randy could barely make it to the bathroom, he kept the pool clean. I throw some chlorine or shock in it and it looks fair, but I am lost at how to take care of it. I’ve managed to get the trash barrels out every week and I learned to mop the kitchen floors and they look good, but the pool. Give me a break! I can’t be two people. I can’t afford a pool guy. We’ll see what happens. Randy did the trash, the pool, the cars, the dogs, and the kitchen floor. I did the other stuff. Now, I get to do it all. Lainy – do we have to embrace ALL of the new normal? hahahaha. I am still resistant to the pool, maybe I’ll warm up to the idea when it’s swimming weather.
I totally understand about missing someone but not being lonely. I miss my husband every single day, but I am not lonely. I am surrounded by evidence of his love every where I look, in every room. It is hard to express that you are so sad and have lost 1/2 your heart, but for some reason, when you get up in the morning, you still go to the bathroom, and put one foot in front of the other. Somehow, you keep breathing. Sometimes I say, I am still putting one foot in front of the other. Sometimes I say, it really is true that God’s grace is sufficient – it doesn’t take away your pain or your loss, but it does carry you through. I think I have been very fortunate to have people be very understanding when they ask and I tear up. I only manage one day at a time because the future looms way too large. Susan
Oh Melanie – I wish we could be there to hug you and help carry the pain you are suffering right now. It helps to be able to talk about Barry and your love, your life. The pain is so awful and I am so sorry. It’s only been 6 weeks for me since my beloved husband died, and I feel like an alien when I go places and I have to force myself to go. It just seems like such a huge mountain to climb. Climbing it when you just want to pull the covers over your head is overwhelming. Please come and share your feelings often. We are so willing to listen and as you share your pain, we get in touch with our own and hep you carry yours. I am praying for you. Susan
There will also be a Bile Duct Cancer walk in California, in June I think. I will keep you posted. My daughter’s company is supporting CC in their company walk this year. The day ends with candles lit and it is very inspiring. They will walk in memory of my husband and her dad. We are so pleased to participate in this event. Will get more information as the time draws nearer.
Dearest Melanie – I am so sorry for your loss. I know the sorrow of losing your husband and soulmate. My prayers are with you and your young children. What a difficult pain to bear. My heart is with you and I send you a hug through these pages. May this prayer bring you some comfort:
We thought of you today, but that is nothing new.
We thought about you yesterday, and the day before that too.
We think of you with silence, and we often speak your name.
All we have now are memories and a picture in a frame.
Your memories are our keepsakes with which we’ll never part.
God has you in safe keeping; we have you in our hearts.
It broke our hearts to lose you, but you did not go alone.
A part of us went with you the day God called you home.Your loving family.
I do not know who to credit for this poem, but a friend of mine shared it with me and I share it with you.
God be with you and bring you comfort and peace.
Susan
Dear Sara – I can imagine that you are anxious about your sis-in-law leaving you. I have found that I feel most secure when I can stay at home in our house. Somehow I feel safe and secure in our home even though my husband passed away 5 weeks ago. I have “moments” when I cry and I miss him. I have more times when I struggle having energy. I forget to eat. But my family and friends are very supportive and I joined Lainy’s PUSH club. I push myself to do what I need to do. I don’t think about the future. I handle just what I need to in a day. I have my son help with some things that seem too much for me. My daughter lives close and she cooks for me a couple times a week or invites me to her house. Everyone does this differently, and you will find your way. It will be very important for you to talk as much as you need to. Come and post often and we will talk with you and just tell you what has worked for us. You will take what appeals to you and try those and see what works for you. Blessings to you as you transition in this difficult time. Blessings, Susan
Welcome Cedar – I hope you come to visit us often here. CC is such a difficult companion and one we never wanted. You will feel unbalanced quite often, but we encourage you to arm yourself with as much information as possible and get as much support as you can. We are certainly here for support and whatever else we might be able to offer – encouragement, understanding, a listening ear. Blessings to you as you walk through this with your mom. Susan
Dear Kathy – Gemzar/cisplatin is a very common treatment for CC. Have you gotten second or third opinions? We highly encourage that you do that. Also if you go to the National Institute of Health website, you can get a lot of information on clinical trials that are available. Best of luck to you and your family. Blessings, Susan
Dear Lanne – I am so sorry for you loss. Keep coming to the site and talking with us. Many of us have recent losses also and understand how you are feeling. I am sure that your mom and dad and talking about how proud they are of you and all that you have done in your life. They are having a glorious reunion and one day you will join them. Blessings, Susan
Hi Kathy – As Lainy said, Gemzar/cisplatin is a very popular chemo treatment for CC patients. My husband had 3 rounds of Gemzar/Cisplatin. Some people respond very well and their tumors shrink. Others don’t get such a good result, but seems like it would be worth a try. If you go to the National Institute of Health website, you will be able to find out more information about the clinical trials that are available. Blessings, Susan
Hi Full of Hope –
My husband also was on Gemzar/cisplatin and had 3 rounds of chemo, which was 6 treatments for him – chemo on day1 and day 8, skip day 15, back to day 1 and day 8. After this first “round” of chemo, his tumors were not shrinking so treatment was discontinued. At his stage they didn’t think chemo would help, but for our children and grandchildren he had to try.
Some people do very well on the chemo and have had their tumors shrink and that is what we hope for you.
Come here and allow us to walk with you in whatever ways you are comfortable. We welcome you to our family and will do whatever we can to provide support, answers, encouragement, a “virtual” shoulder.
Blessings as you search for more answers. Please, if you haven’t already, get second or third opinions and see someone who is very familiar with CC so that you get the best possible options and treatment.
Blessings, again,
Susan
My goodness – you seem to have a wonderful attitude and that’s more than 1/2 the battle. Congratulations for an upbeat attitude and forward thinking. My best thoughts and prayers are with you for Wednesday. I thank you for encouraging me today. Blessings, Susan
Welcome to our family, Rhoda – So sorry about the news of your Uncle Tracey. CC can be a roller coaster ride, so come talk with us often – share your hopes, your fears, his progress, the roller coaster ride – whatever you need. So many of us have found a wonderful supportive family here who really understand what you are going through. My husband had CC, diagnosed July 2010, no treatment options, went to heaven on January 29, 2011. Best Wishes at Barnes Jewish Hospital – I have heard some very good reports from people on this site about Barnes. Keep us posted. Blessings, Susan
