devoncat
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Welcome to the site.
when I had my resection, my doctor wasnt very concerned about the color of my stool. Basically he said it took awhile for me to get yellow and it would take awhile for all the bilirubin to get back to normal and where it needed to be. I still dont get so many “normal” color stools now…they are always a little lighter and yellower.
I would watch how your partner felt as well as the bloodwork. These will be more predictive right now until after the body has had time to settle in.
Kris
Nidhi,
I truly believe that all patients have the right to know what is happening to them, to their bodies. Your mother has the right to decide her treatment path after she is given all the information. There may be things she NEEDS to do or say before she dies. By keeping this from her, she is being denied a chance to do the things she wants to do, say the things she wants to say and spend her time how she wants to spend it. Just because people are older, does not make them incapable of making decisions.I am terminal. I will die. Most likely soon. Yet I have hope. I will always have hope. Hope does not have to die when the facts are given. The doctor knows statistics, he knows what is most likely to happen, not what will happen. I hold onto that. I have seen wonderful things on this site as well as truly heartbreaking. Which path will your mother take? No one knows. Tell your mother the truth. This is what the doctors think, they dont know. Here are the statistics for chemo, but you are not a statistic.
Kris
Good luck Andrea with the prescription. Lets hope it works.
My doctor knows about the site too. She doesnt come to view, but relies on my findings to help steer the discussions and treatment.
Sometimes doctors are so full of themselves.
KrisHi Lainy,
I guess those quiet times when it is just the two of you are pretty special. Our house doesnt have the revolving door yet, though I think that is coming soon. Patience, love, and understanding is the order of the day.Yep, football is great. I only watch college though. I love watching my team and being a South Carolina fan is stressful! I hope Teddy’s team is better than mine so it is really enjoyable.
Hang in there dearest Lainy.
Kris
Kimmie,
That is wonderful. Enjoy the time with your family and have a safa trip. And dont forget to spoil your mother.Kris
Linda,
This may be a long shot….but wasnt there a cholangiocarcinoma conference there recently? IF there was someone who specialised in that, they most likely would have gone. One of our members went as a representative, but for the life of me I cant remember who. Perhaps you could look through the old posts or ask Marion if she remembers who went and contact them for an attendence list. That is the only other thing I can think of.Oh…and you might want to see which hospitals have a hepto-billary ward. They might not list cc specifically, but I am sure they would have experience with it.
Kris
Good luck Kristin. I hope it all works out for you and chemo. I am waiting to hear the good results from your next scan. Yes, deciding on chemo is a big step, but I am sure it will be the right one for you. What makes chemo scary is all the side effects, but perhaps you wont have that many. I only get thinning hair on the one you are going on…I even put on weight (gotta love steroids!).
Doofus and Pipsquek wont have any idea what hit them.
Kris
Could you keep them coming?
I just got through writing a somewhat sharp email to them stating that we have all sent requests and are continueing to be ignored. I was so frustrated that I accused them of being a typical cancer organisation that focused on the big cancers and ignored rare cancers.
I just got an email back stating that I would have a response in the next day. Finally getting somewhere I think.
Why is it that polite, friendly requests were ignored and I felt that I had to get stinky? I hate having temper tantrums and I feel like I just had one with a good organisation. I dont know what is wrong with me recently.
Kris
I think it is wonderful your mother is being so accepting of the news. It is harder to enjoy what is left if you havent made peace with what the future holds.
Please please get the family to accept your mothers decision. As a patient, I get so frustrated when I see how sometimes family members pressure their loved one into treatment that is not wanted. I personally feel it is unfair to the patient. IT is hard enough knowing you are going to die, and often a painful, messy death, without feeling like you are letting down your loved ones.
I am currently on a downward trend, also losing my strength. For me, I can do a little more in the morning than later in the day so you might want to consider your mothers schedule. I also feel better when I am having regular bowel movements and I have kept up with my hydration and calories. I have started again on the melatonin at night, and that too seems to help. IF I can think of anything more, I will let you know. Just be prepared, this cancer is very tiring. Plus the emotional burden can steal your energy as well.
Kris
Many people get very positive responses from radiation. I was not one of them, but Kristin was.
Kris
No, you cant have surgery if it is in both lobes. After you remove the tumor, your liver grows to make up for ehat was taken away. If it is in both lobes, you are just going to spread the tumor when the liver regrows.
Now that said, we have had people that have had cancer on both lobes, done chemo and got rid of the cancer on one side and then qualified for surgery. You never know where you end up after chemo.
Good luck.
KrisYep, I had just turned 32 when I was diagnosed. I had surgery, but it came back unfortunately…however, another member Sue had her surgery at the same time as I and she is still cancer free so there is hope.
It is very scary getting diagnosed so young when you think your life is just starting. I had just moved to Sweden to be with my husband and had just handed in my PhD. I was going to take the world by storm but instead fate had a different plan. I was cancer free for 2 years before my reoccurance and I am still going strong…some days better than others. And I am not going anywhere anytime soon. So yes, it is bad, but you are lucky to have the chance with surgery and who knows what the future holds. I tell my doctors there is a big difference in 2 months and 2 years and lets shoot for the 2 years. You dont know where life leads, you cant control the road, but you do get to control the radio so pick the best music and see where you go.
The one thing i regret is not having chemo after surgery. I wonder if my cancer would have stayed away if I had had it.
Kris
