darla
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Suzanne,
I understand your frustration & aggrevation. Everything involved with CC is so confusing and none of it really makes sense or follows any rules. If BCBS has already denied you once I don’t understand why the doctor &/or Radiologist won’t assist you until you do an appeal on your own. Like you stated, you are not a doctor & don’t have the knowledge to make a proper appeal with the information that they need to hear to get them to change thier opinion. Maybe someone on the site has had to go through this process & will come up with something to help you out.
As for the PET Scan. The way it was explained to us is that it will show things that other tests do not, especially within the liver. I believe it has something to do with a small amount of radioactive type material along with a sugar type substance that will deliniate any hot spots within the body. Keep in mind that we were under a lot of stress at the time that all of this was going on so I may not have this exactly right, but that is how I understood it.
There has got to be a way to prove to BCBS that this test is vitally important in diagnosing your disease. Also as Jean stated, doing the PET could conceivably save money by eliminating tests that may not be as effective. These insurance companies think they are God, but they are not & it is so unfair that they can play with people’s lives this way. Don’t give up Suzanne. Keep on fighting for what you want and need. I wish you the best with your fight with BCBS & your fight with this horrific disease. Take care. I will be thinking of you. Keep us up to date on how things are progressing.
Lots Of Love & Hugs,
DarlaDear Mary Anne,
You & your family are in my thoughts & prayers. Remember that Joe will always be with you in your heart & memories. He has moved on to a better place where he is no longer suffering or in pain.
Love & Hugs To All Of You,
Darla
In our situation, none of the tests showed anything including the CT Scans. He had MRI’s, ultrasounds, CT Scans etc. The Pet Scan was the only one that actually found & helped to diagnois my husband’s CC along with a liver needle biopsy. Most of what I have learned since then leads me to believe that the PET Scan is the way to go. Of course, this is just my opinion based on our situation. Wishing you the best out come whatever course you take.
Pauline,
I know what you mean. I was out for dinner with friends. We talked a lot about Jim & it made me feel good. Now I am back home alone & just wandering aimlessly around the rooms. Thinking of Jim & looking at pictures. Sometimes I think it is getting worse instead of better. I too can not believe that I will never see Jim again. He will never be here with me again. It is just so hard to believe. The nights are the worst & when I wake up in the morning I hope that this was all a bad dream (nightmare is more like it) and he will be here beside me and none of this will have happened. Some times I feel like I am strong & doing OK and then the simplest thing will just make me fall apart. The holidays & the weather don’t help either.Joyce,
Like you, I wouldn’t mind the bad weather so much if Jim were here with me. I have good memories of time we spent together doing nothing special but just being together when we were homebound because of the bad weather. It truely is not the same, is it?Sue,
You are right. We do have to try to think more about all the good times we had with our husbands. A lot of people never have that.I think I am going to follow Joyce & Pauline and make myself a hot chocolate, then go to bed & try to get some sleep.
In some strange way, it is comforting to know that we are all going through this together and that we all know & understand how it feels. I am thinking of all of you & hoping that we can all somehow make it through the holidays without too much difficulty. I know it won’t be easy, but at least we have each other to lean on. Take care ladies and keep in touch.
Love & Hugs To All Of You,
DarlaAll I can tell you is to take it one day at a time. Sometimes it may even be moment by moment. You will feel panicky & have a lot of anxiety at times, and just about the time you think you have it under control it will hit you again. It just leaves you with such an empty feeling. Everyone tells me it gets better with time. I sure hope so!
Tonia,
What you are feeling is normal. I was so involved with Jim & his care for almost 2 months and also trying to keep everything else going too. It was constant 24/7 & then just like that there is nothing. It will just take time. I’m still trying to adjust. It is not easy. Just know that we are all here for you. Now you need to try to take care of you.
Love & Hugs,
DarlaCongratulations to both of you. Hoping there will be no side effects & that the scan will look good!
Tonia,
I am so sorry. I know how you feel. My husband passed away shortly after being diagnoised also. It is really hard to adjust to when it goes that fast. You don’t even have time to think about it. I also feel like Lainy stated. Atleast they did not have to suffer this terrible disease for a long time & they are now in a better place, no longer in pain & will live on in our hearts forever. It is much harder on us as caretakers to have to now go on without them. You can be proud that you did everything you possibly could for her under the circumstances given to you. You & your family are in my thoughts & prayers.
Darla
Alex,
Unfortunately I don’t have any answers for you, but I want to welcome you to the site. Although no one here really wanted to have a reason to be here, we are all greatful that we are. I am sure that someone will be able to answer some of your concerns shortly. I am glad you found the site early on. I wish I had found it sooner, but am so glad I did find it. The people here have so much to share & are willing to do so. All you need to do is ask. Everyone is so supportive & it has truely been comforting to me to be able to come here for information, support, guidence and sometimes just to vent my anger & frustrations. There are several members in the UK & I am sure they will be able to help you out. I will be hoping that you can sort some of these things out for your Mum. Wishing you both the best on your journey with this horrible, unpredictable disease. Take care. I will keep you both in my thoughts & prayers.
Darla
Dear Carol,
Some days I really don’t feel that strong, but I am willing to share what strength I have with you whenever you need it. More hugs & love coming your way. Try to take care of yourself too so you can stay strong for Charlie.
Love,
DarlaI do believe that I read a post somewhere about PET Scan studies & relavence to diagnosis of CC. I can’t seem to find it now but if I do I will post it.
I also posted that in my husband’s case, nothing was showing up on any of the other tests & that the liver needle biposy & PET Scan were the only tests the showed that he had CC in 95% of his bile ducts. Until the PET was done they were not sure what was going on except that it was suspected that he had some type of cancer. I honestly feel that with the interahepatic bile duct cancer, especially if it has not spread to anywhere else, the PET Scan is the most effective & important test to diagnois it and that it should be suggested as early on as is possible. Now you need to get BCBS to agree to this! Can your Doctor & Radiologist submit something to them to convince them that it is “medically necessary”? I for one feel that it is & I am sure so do many others. I am hoping for the best out come for you in this situation. Don’t give up. Keep on fighting.
Darla
Krysta,
I am so sorry for your loss, but gratefully that he passed peacefully. Know that you & your family are in my thoughts & prayers at this sad time in your lives.
Darla
Heather,
I am so sorry that the results of the scan were not what you & Lee were hoping to for. I’m not sure if the extreme cold sensitivity is due to the meds or the cancer. Jim also become more sensitive to cold as his illness progressed. I am sure that Em’s solo will be wonderful & a bright spot in this sad time for your family. Hoping for the best for all of you. You will be in my thoughts & prayers. Take care & keep us updated as to how things are going when you can.
Love & Hugs,
DarlaCarol,
I am so sorry that it has come to this point, but as you said, the main thing now is to keep Charlie as pain free as possible. I too enjoyed the verse. Thanks for sharing it. It sure is appropriate, isn’t it? This cancer just makes me feel so angry & helpless, so I will do what I can which is to keep you, Charlie & your family in my thoughts & prayers.
Love & Hugs,
DarlaHi Everyone,
Pauline, I am doing OK, not great, but OK. Thanks for asking. I too am dealing with the holidays by not dealing with it!
Joyce & Sue, I too think that the two of you are dealing much better with the holidays than Pauline & I. I am only doing minimally what I absolutely have to. I will try to make an effort on Christmas Eve & Christmas Day, but I really just wish it would all go away!
Sue, I am glad that you & your mother had a nice time in Spain.
Marion, Thanks for sharing the link, I am going to check it out.
Patty, Thanks for sharing your thoughts & Christmas memories. I hope that in the future I may be able to do the same, but right now I just can’t deal with it yet.
Charlene, I am also thinking of you & everyone else here. As Pauline said, we are all here for you when you need us.
It is so cold here & we had more snow last night & are expecting another 10-12 inches in the next day or so! I hate it!!!!! Just one more thing to deal with. Joyce, get ready as it will probably be heading your way if it doesn’t fall apart on it’s way there.
So, everyone take care & do the best you can to get through this holiday season. I am thinking of all of you.
Love & Hugs,
Darla
