February 2, 2012 at 9:37 am #57160mariaMember
Jtoro, I´m so sorry you´ve fallen down into this dark hole we all stumble in to sometimes.
Please try to focus on the present – THE ONLY MOMENT WE LIVE IN, EVER.
Only in the present can we change anything. The past only exists in our minds, as does the future. Trying to control the past or the future will only cause you dispair, all the power you have is here and now.
What happened did happen because it did. You cannot change that. The future will come to you as a present moment, and what you do now will affect how this moment will present itself.February 2, 2012 at 12:01 am #57159marionsModerator
Jtoro…keep venting and know that letting off steam allows for a clearer head and mind. You are in good hands with Dr. Lenz as he will do anything in his power to bring this cancer into remission.
I hope that you have a better day.
Hugs and love,
MarionFebruary 1, 2012 at 3:33 pm #57158tiff1496Member
I’m so sorry. I think its normal to have down days. I will pray that today is a better day.
I also have a husband and two children that I don’t want to leave. If you ever want to chat, feel free to send me an email message. (hugs)February 1, 2012 at 6:01 am #57157nancy246Member
Dear Jtoro, You and other CC patients are the strongest people I know! Don’t feel bad for feeling down at times – you have a tough job fighting this disease and you are doing an awesome job at it!
It is hard not to think of the “what ifs?” but try not to dwell on them. When I start thinking about the “what ifs”, I push the thoughts out and change my activity at the time. Of course, sometimes easier said than done!
80% of cc patients are not diagnosed until stage 4, because it is difficult to diagnose until then. So as we ultimately fight for a cure we fight for some means of early detection/screening as well.
Tomorrow is a new day, embrace it and enjoy! I was the caregiver and there was days I crashed too. I would then say to myself “Okay you’ve got that out, now pull up your boots, keep fighting, be strong, and enjoy your time with your husband.” Wishing you and your beautiful family all the best and sending hugs to all. I hope tomorrow will be a good day! NancyFebruary 1, 2012 at 5:38 am #57156marionsModerator
Jtoro….I just posted this in another thread.
This is what I have learned: Due to the lack of early detection the majority of patients are diagnosed at an advanced stage of this disease. Cholangiocarcinomas are usually slow-growing and generally do not metastasize quickly. These cancerous tumors can start anywhere along the bile but, eventually they will cause blockage to these ducts.
We know that the symptoms of advanced stage disease include: chills, clay-colored stools, fever, itching, loss of appetite, pain in the upper right abdomen that may radiate to the back, weight loss and yellowing of the skin.
We also know that choledochal cysts, infection with parasitic worm, liver flukes, primary sclerosing cholangitis, and ulcerative colitis are known risk factors for this disease.
However, it is my personal opinion that chronic biliary irritation should be a red flag for the physicians and cause him/her to investigate the biliary system via: Abdominal CT scan, Abdominal ultrasound, CT scan-directed biopsy, Cytology, Endoscopic retrograde cholangiopancreatography (ERCP,) Magnetic resonance holangiopancreatography (MRCP,) or Percutaneous transhepatic cholangiogram (PTCA.) A liver function test should be performed and alkaline phosphatase or bilirubin levels should be checked.
Will we have to fight the insurance companies? Most likely we will. Will this lead to early detection for all patients? Most likely it will not. But I strongly believe that many of our patients will benefit from the extra attention given and yes, I believe that it could lead to earlier diagnoses of Cholangiocarcinoma. We know for a fact that those patients with early diagnoses and a possible, curative resection have the greatest chance of survival.
My love to all,
MarionFebruary 1, 2012 at 4:20 am #57155betsyMember
I have days when I am so down I just hide under the covers which then makes me angry because I hate feeling sorry for myself. The anger energizes me to get out of the house and find something to do that I enjoy which then makes me tired and I go back to bed and start the whole cycle over again. It’s an interesting way to time.
I do take anti-depressants which really help. I am sorry you are having a bad day today. I agree with Pam about the winter blahs. Do be kind to yourself – its easy to look back and think about what you might have done differently but you were making the best decisions you could based on the information you had. And who knows, you could have been tested every year and the cc still might not have shown itself until May.
BetsyFebruary 1, 2012 at 3:06 am #57154pamelaMember
Everyone has their bad days. Sometimes I think it is twice as hard in the winter months on the dreary, dark days. You have every right to feel bad at times. This cancer really sucks. You can beat yourself up about would’ves and should’ves, but it won’t change anything. So think positive thoughts ( I know, easier said than done sometimes.) Believe it or not, I am one of the world’s biggest pessimists, but since Lauren has gotten sick I have to make myself think positively. I have always wished to be the bright, sunshiny, life is beautiful type of person. But I’m not. I am getting better though. Little things that used to send me over the top don’t really matter anymore. I am going to enjoy having my daughter around me as much as I can. That is what matters to me. I really feel that trying to help others helps me more. Speaking to others in a positive light makes me feel more positive. I hope you get what I’m saying. I feel like I’ve been through a therapy session with myself!! Take care JToro and just know that there are a lot of us that really care about you.
Love, -PamFebruary 1, 2012 at 2:43 am #57153wallsm1Member
I can agree there are definitely up and down days and constant second guessing about decisions you made and every symptom you ever had. I’m sorry you had such a bad day but you mustn’t blame yourself. It’s not your fault you got this disease. It’s good to vent every now and again. Take care of yourself and talk to your Dr about it if it doesn’t improve.
SusieFebruary 1, 2012 at 2:11 am #57152lainyMember
Jtoro, I know that you really know you cannot change the past. We never know why things happen as they do but I hope you stop using your energy stressing about what could have, should have. You are not guilty of a thing. Not that I can compare my ulcerated colitis to what you are going through but IF I had listened to my system as well as I took care of Teddy I wouldn’t be in this UC state today! We all do that. We are busy living as we do and tend to put things on the back burner. OK. So, I am allowing you to have your feelings today but that is it for awhile so you can give yourself a break. Just curious, have you talked to your Doc about this and perhaps he could give you something ‘light’ to help with the depression? I am sending terribly big hugs your way. You never know how strong you are until “strong” is the only choice you have!February 1, 2012 at 2:05 am #57151mnMember
I’m so sorry you are feeling that way. You have every right to feel that way too. If I am correct, you are with Dr. Lenz now, you couldn’t ask for a better doctor.
Be kind to yourself, you tried. You can’t go backwards. Have your pity party every so often and then move on from it. If that doesn’t work ask the doctor for something for depression. Hopefully it will help lift that feeling from you.
And I know what you mean about going to the doctors and them never finding anything. I have had the same problem for a year and half. I waited to go for the first eight months because I thought it was just stress. HOwever, when isn’t life stressful…it is always stressful about something.
Hugs to you,
MichelleFebruary 1, 2012 at 1:10 am #6294jtoroMember
I’m having a very hard day today. Since my diagnosis in May 2010, I have been up and down with depression. Today is a particular bad day. I keep going back over the 8 years before diagnosis and all of the signs something was wrong and not one doctor did anything to help. I had stomach problems and bowel issues, but Dr. Thought it was just stress and not a big deal. I always knew something wasn’t right. Every couple of years I would go in and be checked, but nothing ever found. He never did Ct or any other deeper testing. Just did blood work and that was always o.k. Until my May diagnosis when they did ultrasound at my urging and saw something on my liver and then took a month to diagnosis CC..
I have such blame today of myself and my Dr. For not finding it years ago. So sad. Don’t want to leave my husband and two children.
Sorry just needed to vent,
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