devoncat
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I cant add much to the pain discussion since so far I can manage mine with Ibruprofin. In Sweden, you return unused medicine to the pharmacy so it doesnt end up in landfills and affect the water supply.
Kris
35, always had a problem with heartburn, doctor said just bad luck and that I had a better chance of winning the lottery than getting cc
I jsut went through a course of radiation and I am classified as Stage IV. I was extremely tired on it and felt queasy a bit, but overall not as bad as I thought it would be.
There are different types of radiation and they can decide which type you give you depending on placement and size. Cyberknife, external, internal and proton beam are all types of radiation that you can research and ask your doctor about.
Take care,
KrisSuzanne,
Hope you get the results you are looking for. I have never heard of a spleen embolization. Hm, will need to read some more.Take care adn enjoy the summer.
Kris
Hollie,
I am sorry for your loss. Sophie was one of our great characters and cancer warriors. She will not be forgotten.I will keep you and her family in my prayers.
Kris
I am glad you are seeing someone. I do to and it has been a wonderful blessing for both me and my husband. I hope I didnt come across too harsh. I am worried about your guilt. I have it too sometimes, we all do. I admit I was trying to give you a kick in the pants.
I hope I did not overstep too much. My psychologist often gives them to me and though it is hard to hear sometimes, it does put things into perspective. Sometimes we all get caught up in the what ifs and we need to be shaken out of them.I too was on medicine for depression and sleeping pills. I had to get off them because they were causing my liver to work too hard. My psychologist stepped up our number of sessions to help with the emotional stress. There are several members who are also on these drugs and find them helpful. I remember when I first started on the meds, my doctor was very specific that if the drug I was on didnt work, there were others to try. So keep that in mind.
I know for me, it was the times of silence when all the doubts and worries entered my mind. To help combat this, my husband started reading me to sleep so I could focus on his voice, not on my thoughts. It is a wonderful way to relax and spend time together. You may also want to think about something like swimming which will help keep your strength without being too tough on your body.
Like I wrote earlier, all my comments were given with all the love, compassion and hope from one patient to another. You will find your way in time and until then, we will all offer our shoulders to lean on and our ears to listen.
Have fun learning to crochet with your daughter.
Kris
Jtoro,
I am going to be a bit hard now…you are choosing to accept blame where none is due. I say that with all the compassion and heart and hope from one cancer patient to another.
Go through these pages. I would estimate over half of us have had scans, ultrasounds, blood tests that came back fine when things were not fine. I was first diagnosed on a “gut” feeling of a surgeon, not because anything was ever picked up on a scan, but because I turned yellow and didnt have gall stones. My cancer came back two years later, did they find it on a scan? No. Bloodwork? No. I just wasnt keeping food down and they thought it might be scar tissue from my original surgery so they opened me up to look at my stomach and low and behold there was another tumor. The doctors can only tract my tumor now because they put metal tags on it so they show up in the scans, not my actual tumor. This is a normal with this cancer. It hides. It sneaks.
You do NOT know they would have found it a year and a half ago. You do NOT know this would have made any difference to your treatment or quality of life. Some people deteriorate with treatment, not get better.
You have decided this is your fault which it isnt. We have all tried to make you see that this is a difficult cancer and is unpredictable and extremely hard to diagnose in its early stages. You have decided to take the blame. This is something that you need to talk to someone about because it is very unhealthy and will only eat away at your strength and energy. You need this to fight. Do you think your family blames you? Of course not.
As patients, we all feel some guilt. But you are letting it take over your journey. We cannot control what our futures hold, but we can control our reactions to it. I know I am being harsh and perhaps rude, but I am only trying to get you to open your eyes to the reality of the truth. The truth is you are not to blame. The truth is the more you blame yourself, the harder it is not only on you, but your loved ones as well. They dont want you beating yourself up and they will take on some of your guilt because they know you feel guilty over them. It is a guilt cycle. Put a stop to it now.
Please talk to someone about this. We all know how you are feeling, either personally or through our experience with loved ones. But we are unable to help you see this is not your fault for some reason. The longer you hold this guilt, the unhappier your life will be.
Hang in there. You will find the strength to fight this cancer and love life and your time with your family again. But perhaps you need to concentrate on yourself and your emotions for a bit.
Hugs.
KrisBetsy, you gave me a BIG chuckle. I am such a tight wad I hate spending money. Perhaps I should take your attitude!
Kris
You guys made me smile because it brings to mind Caroline Stoufers (I hope I spelled that right) video that high school students made with her and was played at her memorial service. Someone comes up to her and talks about coffee enemas and the next scene you see her scouring the coffee aisle with a twinkle in her eye. Thanks for bringing to mind an incredible woman and one of the first people I “met” on this site.
Kris
Welcome to the site. We are a great group full of support, knowledge and advice. Not to mention we are all very beautiful inside and out.
The problem with cc is that it is often detected in its later stages. That makes treatment difficult. That said, everyone is going to pester you to get second and third opinions because this is such a rare disease that doctors are often scared or unsure how to procede. Many people here have been told no to surgery by one doctor and yes by a fourth.
Chemo response will be measured by scans. I felt worse on chemoradtion and my doctor only giggled and said it was the treatment, not the cancer that was causing problems. So you wont be able to tell just by how your mom feels. Some blood tests offer insights, but are not 100% reliable.
No one knows how long we or your mother has. Some people live years some months and there is no way to tell how your mother will do. Keep positive and laugh and play. It might not make your mom better, but she sure will feel better.
Hang on. This is a rollercoaster of a cancer. There will be highs and lows, but our members will be here for you.
Kris
I am glad your son has someone he can talk to and trusts that is removed from the situation so can offer some perspective. In awhile, you might want to ask your son again if he has any questions and then ask how he thinks your daughter is doing. Children will say things to each other, voice their fears and insecurities that they would never say to their parents. He might have insight into how your daughter is doing.
Your children will pick up that things arent as good as one could hope. Leave the door open for them to talk.
Kris
Ok, I just had a worry that I might have offfended someone. Sorry if I did. I tend to have a weird sense of humor these days. My bestfriend and I always joke about my cancer. Stuff like when I was on a tough chemo and we are debating to get a piece of cake, we said..Why not? Its not like I wont throw it up later. We have really shocked her husband a time or two, but we both find dark humor makes us feel better.
Kris
You might have missed it, but the CC Foundation has our own wonderful Dr. Giles who answers our qestions. A member asked how to talk to the kids and here was his answer
http://www.cholangiocarcinoma.org/ask.htm#question5
1) you have not ruined their lives as this is NOT your fault 2) you do not know the future. Nobody does. Your path may be different than someone elses. My doctor basically told me I should be dead now but that I look no different than when I had my reoccurance 18 months ago. I am at 3.5 years since diagnosis, and I am not going anywhere anytime soon…that I know. What my doctors think and what the statistics say might be different, but I know that NOBODY is a statistic and that includes YOU. We can know what will likely happen, but not what will happen. Who knows what side of the statistic you will fall? 3) You tell your children with love if you can and you think it is best. I just know if I was 17 and my mom had cancer and I knew the symptoms, I would be googling like a mad woman. Perhaps telling them will offer some relief in that there will not be this big secret. It is obvious you love your children and I am sure they love you too. Perhaps if you feel it is right, the family could gain strength, love, understanding and support from one another.
Kris
