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  • #39381
    jtoro
    Member

    Kristin, taking my daughter to horseback lessons today and tomorrow going to a barbeque at neighbors. Went to prayer group this morning that about 10 girlfriends have organized for me each Saturday. It’s my time to vent, cry, and get support and peace.

    #39380
    kristin
    Member

    Oh, and one more thing I forgot to say in my earlier post– it’s quite posible your abdominal pain had NOTHING to do with the cc, and they wouldn’t have found cancer even if you HAD gone back to the doctor.

    That pain I had went away after two days, and they later concluded it was totally unrelated to the cancer– something to do with my esophagus, that fixed itself. Cancer normally does not cause any pain in the early stages, especially cc, and that’s what makes cc so sneaky and hard to diagnose.

    So– back to the present moment– what are you doing this 4th of July weekend? I hope you can go out and enjoy a fantastic fireworks show where you live!

    All my best wishes to you,

    Kristin

    #39379
    rick-kamp
    Member

    Jtoro,

    I commented on your post in introductions too, but just wanted to touch on hwo you think you are responsible for the cancer spreading and not catching it early. THat is simply not the case. This cancer can seed to other locations and not be detectable for a very long time. If you read my story you can read about this first hand how my team at Mayo felt that my cancer had seeded to my peritoneum probably at least a year before my diagnosis and the tough part is that it wouldn’t have even been detectable there if we found the primary earlier and had tried a surgery. So, in a way, for me it was good that the mets were not found until later in stage to save me from the difficulty of a rough surgery only to not result in a cure.

    This is a silent cancer and very difficult to detect. I was on a screening regiment for it because I had a risk factor and it was STILL found at a late stage.

    Rick

    #39378
    betsy
    Member

    Jtoro –

    I went in or a physical because of weight loss – I thought I was depressed over my Mom’s death a couple of months earlier. After blood work and x-rays, my doctor found my tumor. I had no other symptoms…no jaundice, no abdominal pain, no itching. The doctor said, based on the size of my tumor, it had probably been growing for a couple of years.

    Betsy

    #39377
    devoncat
    Member

    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

    #39376
    darla
    Participant

    I totally agree with everything Kris has said. My husband had ultrasounds, ct scans etc. and none of them caught it in the beginning and in his case it had probably been there for a very long time. Live for today and enjoy every day you are given. Take care and keep coming back, it does help to know others care and understand.

    Darla

    #39375
    andie
    Member
    Jtoro wrote:
    Kris,
    I am seeing a counselor once a week and am on depression and anxiety medication. I know in my heart I did not cause this, but I am not able to stop looking back. I realize I need to fight this disease and go on with my life. Trying to get out each day and enjoy things. My daughter is teaching me to crochet today. Then we are off to a walk
    at the beach when my husband gets home. My physcologist tells me to put what’s ahead out of my mind and each today. She said it’s always going to ge there, but push it out of your brain.

    We must have been posting at the same time. I am glad you have been spending time with your family today and also speaking to a counselor. It seems like your fighting spirit is starting to break through

    Best wishes

    #39374
    andie
    Member

    Jtoro,

    I agree with Kris, you really need to stop blaming yourself. I know I’m not going through this personally but my Dad is and it would tear me apart if he was blaming himself. I know it’s hard, the first thing my Dad said to me was “sorry”, to hear him say that tore my heart apart. We had a good long talk, where I told him he had nothing to be sorry about and we would fight this together, and that’s what we are doing. Our positive attitudes help.

    My Dad was having yearly blood tests for his previous colon cancer, he had this the few days before he became jaundice and the results for these and his FBC were fine. All the time he went to the doctors they said it wasn’t cancer, 99% gallstones but because the stones weren’t showing on an ultrasound they were probably blocking the duct and to keep drinking lots. This carried on for 3 weeks until he was admitted as his bilirubin was getting higher. He had more Ultrasounds in hospital, then failed ERCP, when the ERCP was unsuccessful they said it was scar tissue he then had a PCT and this is when they thought something was wrong. Another CT scan showed up a 1.8cm shadow that they still thought was scar tissue, and were discussing what the next step would be, probably surgery. It took another hospital to diagnose CC, this goes to show this is not straight forward. We went through a period of blame, why didn’t they know, surely scar tissue looks different to cancer, if they had diagnosed it sooner he could be treated sooner, have more of a chance. But then we realised what’s done is done, we need to look to the future and start fighting this. This is when I found this wonderful site, and through the people on here I have become more stronger, and more determined to help my Dad get through this.

    Have you got anyone you could talk to?, perhaps someone outside the family would be best, I often phone my Dads clinical nurse. I know Macmillan nurses offer help perhaps you could arrange to speak to one of them.

    I have days when i just feel like crying, and i do, then i pull myself together and carry on. No one knows what the future holds and there’s no use thinking of the past, that’s gone and nothing can change it. You need to find your fighting spirit and turn all your negative thoughts into positive ones. This journey is a rollercoaster and at times you feel like you are going one step forward then two back but you have to deal with it, that’s life and at times it sucks.

    I hope you manage to find your fighting spirit soon, not only for your sake but for your families.

    Best wishes

    #39373
    jtoro
    Member

    Kris,
    I am seeing a counselor once a week and am on depression and anxiety medication. I know in my heart I did not cause this, but I am not able to stop looking back. I realize I need to fight this disease and go on with my life. Trying to get out each day and enjoy things. My daughter is teaching me to crochet today. Then we are off to a walk
    at the beach when my husband gets home. My physcologist tells me to put what’s ahead out of my mind and each today. She said it’s always going to ge there, but push it out of your brain.

    #39372
    devoncat
    Member

    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.
    Kris

    #39371
    jtoro
    Member

    I had been to doctor 1 1/2 years before for a slight pain. He did bloodwork and said if it doesn’t go away do an ultrasound and I never did because the pain went away after a day. If I would have done it they would have found it.
    Jtoro

    #39370
    darla
    Participant

    Jtoro,

    Don’t beat yourself up about what has happened. It is no ones fault. CC is so unpredictable and hard to diagnosis. My husband was going to his doctor regularly and in June his tests were all fine, including his liver enzymes. His cancer was interhepatic in the bile ducts of his liver and so advanced that he died 7 weeks after the first indications that anything was wrong. We didn’t even know for sure what it was until about a week before he passed away.

    Although I have heard of it going this quickly often on this site, there are also many stories of successful treatments and people living a long time. I do believe that a good attitude does help. I have been on here since a few days after he passed away and that was almost 2 years ago. In that time I have seen some great advances and much more awareness of this very rare type of cancer. No one knows what the future will bring. Try to keep your hopes up and stay positive. Try not to look back, but forward. I know that is not easy with what you are dealing with, but please do not blame yourself. Keep in touch and let us know how you are doing. You will get so much help and support from the people here it is unbelievable. I will be hoping for the best for you.

    Darla

    #39369
    kristin
    Member

    Sometimes it can take a very long time to get a cc diagnosis– more than 6 months, in my case. It’s a very, very rare cancer and most doctors have never run across it.

    When I showed up in my doctor’s office for a skin problem and mentioned I had mild abdominal pain, they figured that since I was female and middle-aged, it was probably my gall bladder. It took (let’s see) blood tests, a stomach xray, an ultrasound, a nuclear scan, multiple CAT scans, an MRI, an ERCP, and a needle biopsy to come up with a diagnosis– and even then, they weren’t 100% sure until I finally had surgery and they took the tumor out.

    I think you will feel better if you start thinking more about the present, and not about a past that you cannot change. Try to find something good to enjoy every day.

    My best wishes to you–

    Kristin

    #39368
    lainy
    Member

    Jtoro, please STOP being angry at yourself. NOBODY knows when they get CC at first. Teddy itched for 2 weeks. We thought it was an allergy of some kind or a bite. After 2 weeks I told him he better have LABs and 3 days later he Jaundiced. Can we go back? No. Would it have made a difference? No, not with this Cancer. You need to have a serious talk with yourself that it is nobody’s fault. Wouldn’t it be so much better to use all that energy toward getting better? We have people on this Board who have simply survived by using a positive attitude. Like our Oncologist said last week, “You are alive, so live it and enjoy it the best you can”. Or as 32coupe said, “today is a gift from God, open it and embrace it”.

    #39367
    kathyb
    Member

    I understand your feelings. I went to the doctor the end of May for my yearly complete physical and all my blood work and everything was great. Not much more than a week later I started itching, went back to the doc a couple of times in June and was treated with steroids for the unexplained itching. They did not do more blood work as I just had it. It wasn’t until I went to another doctor the middle of July who did blood work and a CT that I was diagnosed with “undiagnosed liver disease.” The end of July I was officially diagnosed with bile duct cancer with only half my liver left (atrophied) and told I probably had this a year or two. I thought I was the picture of health. By the time insurance approved me to go to a place (Mayo Clinic) with experience in bile duct cancer, the tumor had doubled in size during the month of Aug. (which then I did not qualify for a liver transplant).

    You know, this makes me mad too! Don’t be mad at yourself, though. This seems to be an unpredictable cancer. Why can’t being unpredictable also work in our favor when things aren’t looking good? I think it can.

    Kathy

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