lainy
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Welcome Sandy to the best little club in the world that no one wishes to join. We are so very sorry to hear your brother’s story. May I ask when the PET Scan is scheduled for? Do you know if his doctor has dealt with CC before if so, like more than a couple of times? Possibly, and I am not a doctor, because he has so many other health issues to deal with, he may have had symptoms and thought they were related to something he already has. This first phase of CC, after hearing the diagnosis, is fear and then once you learn more and can get a direction on treatment that fear turns to fight. Wishing your brother the very best and please keep us posted.
What a nice thing for the nurse to say. And that shows you that you helped ease your mom along this awful journey. Our hearts and prayers are going out to you and you family.
Welcome, Ed, to the most wonderful club in the world brimming with the most caring, loving people you could ever find anywhere. So very sorry about your diagnosis and we wish we knew how it would “play out”. This monster reacts different with everyone and everyone reacts different to this monster. We have people who opted the no treatment way and lived longer than expected. We have had those who took treatment and their time was very short. If we only had a crystal ball. Would you mind telling us what the doctors prognosis was and the suggestion of treatment?
Hi. I think we have lost sight of the fact that once the bile is draining you will still look yellow for a bit. Not as bad but the tint is there. As for the gas….I think CC your name is really gas. I have told Teddy I was going to tie a spray can around his waist! So sorry to hear you mom is in so much pain and hope it all gets straightened out very quickly. The very worse part of this whole thing is to watch a loved one suffer so and not be able to help. Stay strong and hopefully some answers are forth coming!
Sally, no one should EVER worry about their beliefs and how they act on them. God is all over and knows what is in our hearts. We are all going to the same place in the end we are all just taking different paths to get there. Please don’t be a stranger, come visit us often.
Dear Jan, while we are so very sorry for your dad’s passing, he is now in a more peaceful place free of illness. You are a wonderful daughter and he loved you for walking this terrible journey with him. Our prayers and thoughts go out to you and your family. Please drop in and visit when you are so inclined.
Now I understand, Amy. You have done all you could, do not look back as no one has been able to figure out this crazy cancer. Everything, everyone is so different how would anyone know exactly what to do? Most of us live on our gut feelings, not very scientific is it? You did the best anyone could and the most important thing is to be at your mother’s side as you have been. Sometimes this CC monster shows no mercy. Make her as comfortable as you can and share good memories with her. If mom is at the end of her battle I believe the hospice nurse can explain things from that point to you. Not sure what would be accomplished by going to the doctor with questions now but you need to do what ever it takes to make you comfortable. How can anyone be selfish who has been a care giver to a CC patient? Unheard of. You have choices tomorrow. Take mom or not. Go yourself or not. I believe we know when our final days are ahead and perhaps mom feels this also and just wants to let it be. Again, you have to do what you are comfortable doing and listen to your heart and gut and any decision you make will be the right one.
P.S. I used to tell my kids when they had a big decision to make to make a list of pros and cons and see which one out weighs the other. It actually works.Welcome Viola to our world that is full of caring and loving people from all over the world. You did amazingly well on your post, understood it all! So sorry you have to travel this road but you will find a ton of support here. I just wanted to welcome you and so sorry you had to come. Please keep us posted as we all care.
Dear Amy we have all been gently telling you that you are not receiving straight answers. There, I said it out loud. The biggest question to ask the Oncologist is how familiar he is with CC. That is the biggest. Then just say you need to know exactly what is going on and if he is unsure you want a second opinion immediately. I just hate to say this but at the rate it has been going your mom is slipping and you will have not known anything. Is there someone else who can help you with this so that you don’t have to face it alone? Make a list of questions starting with the experience of the doctor, take someone close to you and go for it head on. IF you would like to talk then send me a personal e mail and I will give you my phone number, or email me with yours. Maybe it would help more if you talked it out. Sending strong thoughts your way. You are not alone we are all here but you are the one who has to deal with the Oncologist. You are a good daughter and I know you want to get your mother the best care you can.
Welcome Cody and what an amazing story from an amazing woman! You are one of those miracles who has shown that no one really ever knows what lies ahead. Loved your gift and it sure gives some food for thought on fighting the fatigue. If you go to our search engine at the top of the page and type in stent you may get some answers on the exchanges. They seem to be a necessary evil. I have one question. Do you still eat chocolate? Just kidding. You are awesome and we are wishing the best for you and please visit us often.
Dearest Amy, I too am so sorry you are having to travel this road. This is a monstrous ferocious beast and we just don’t know enough about it. The important thing is to get your mom comfortable. Perhaps her confusion is from the jaundice. Did they not suggest she go in to the hospital now? What I don’t understand is if they all know she is jaundiced why are they not putting a stint in and if she already has one maybe it moved? I am so hoping you will know more Tuesday and that it all settles down for you.
Welcome John and sorry you had to find us but you have come to the best place in the world with the most caring and loving people on earth. Yes, it is scary, frightening and frustrating when first diagnosed with CC. Then you read up on it, find out all you can. proceed with a course of action and all of a sudden those first frights turn to fight and you do what you must do with tons of hope and attitude. It kind of sounds to me like they are talking a Whipple surgery? If so, my husband Teddy is a 4 year survivor of a Whipple and he is now 77. You can look up my posts on him using our search button at the top. Just type in Teddy or Whipple or Lainy. If you would like to e mail me that is also just fine and you can click on email under my name. Sounds like your doctors are right on with it and acting quickly which is what we hope for. Please do not think your days are numbered! No one was born with an expiration date on the bottom of their feet. We have people who have been told they have 2 months and are still with us after 2 years. Please keep us posted and let us know how you are doing.
Dear Elizabeth, our heartfelt sympathies go out to you. Your mum is now at peace and perhaps it was a better thing that her passing happened the way it did. She passed when she was ready, with dignity and knowing she was so very loved. Our prayers go out to you and your family.
Hi Elaine, this is Elaine (Lainy). I just read up on the SBRT and it sure sounds like Cyber Knife. I have never heard it called that though. Gold fiduciaries were implanted (size of tiny needles no discomfort) treatment was 3 days and side effects were tiredness and later some itching in the area, actually in the back. Tumor can be no larger than 6 -7 cn. It is truly a MIRACLE. This started out as treatment for brain cancer and now they are using it all over. We had no trouble getting it authorized AFTER he had radiation. Stupid protocol you know. Good luck and please keep us posted.
