My Introduction
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Matt,
Never having dealt with any of that I can’t really help you, but I think what KrisV said makes a lot of sense. Try not to let the anxiety get the best of you.
Easy for me to say, huh? I hope all goes well next week at Mayo and you come back to us with a great report. Wishing you lots of luck.Darla
Matt –
One of the things my husband noticed after his surgery was that everything seemed different. He spent most of his time constipated even after he stopped taking the pain pills. One thing that was pointed out to us by the Radiation Onc was that because the left half of his liver was gone, his insides meaning his stomach and even parts of his small and large intestines had shifted more to the middle instead of off to the side. He says that now he feels things in different places that he ever did before and nothing feels “right.” He is ten months out now.
The other thing I always tell my patients, is remember they just cut you open and “played” with your guts, it takes time for all that to heal, something even longer than the 10 weeks you are post-op. There is a lot of swelling and that does take time to go away.
Hang in there and realize that your insides will never be the same as they were before surgery. I still encourage you to get everything checked out for your peace of mind but as you get further out you will get more used to the new normal.
As for the scan anxiety, I don’t know what to tell you. I get it every time we start even talking about one and it’s not me that has to do it. Sometimes I even get a little anxious about the labs.
Hang in there.KrisV
I’m heading back to Mayo next week for some follow up after a frustrating time getting anyone locally to act with any sense of urgency.
Today I am 10 weeks post op and have had nothing but blood work done. It’s all looked very good, including one CA 19-9 result, however, I just don’t feel “right”. I don’t know if the way I feel is my new normal or something else and my anxiety about it is through the roof. My back hurts. My bowels are sensitive with pretty regular movements but they range from constipation to diarrhea in the same sitting. Maybe that’s just the lack of a gallbladder? I’ve got head aches and I’ve never had them in my entire life before. I can’t feel my bladder getting full like I used to… Maybe that’s nerve damage from the incision across my belly? I fell something but it’s not like it was. I get strange sensations bordering on pain sometimes all over in my GI tract. We have a family history of colon cancer. I’m 47 and had a colonoscopy at 40 that was clear. I don’t have bleeding or blood in my stools or other typical symptoms so hopefully it’s just my anxious mind. I’m afraid to ignore the off/odd feelings I get now. The last time I had some, they ended up being CC!
While I’m at Mayo next week I’ll get blood work, a CT of the chest, a demon, and pelvis, meet with my surgeon who will review the scans to validate my new anatomy, meet with my regular doc who will review scans for recurrence of CC, meet with an onc to see if they recommend anything new, other than gem/cigs, and have a colonoscopy to rule out any colon cancer going on in there.
I’m starting to feel the scan anxiety so many talk about here. Yuck
Thanks for “listening”.
-Matt
Hi Mr. Positive! You betcha! 12 is very respectable! I am wishing you continued good progress and indeed, attitude is everything!
Matt…..excellent news. Your CA 19-9 sound awesome. Enjoy and don’t worry about the equipment. You are doing great and deserve a wonderful weekend as well.
Hugs,
MarionI’m considering this good news. I got a call this morning from the nurse at MCV where I had some labs done yesterday and my CA 19-9 results were 12. In December at Mayo prior to my resection they were 453. The tests weren’t performed on the same equipment so it’s not fair to compare, I’m told, but 12 seems like a good low number so I’m happy about it. Next follow up is an MRI at MCV in a few weeks and then back to Mayo in June for labs and a CT.
Make the best of your day and weekend everyone – I’m intending to! (exercising my positive attitude here)
-Matt
Matt I completely understand what you are going through and how you are feeling. Emotions all over the place! I go to a psychiatrist for talk therapy and medication management, mainly anxiety. I have also tried massage, acupuncture, and will soon begin an exercise regimen and I find all these helpful and are great distractions to keep you and your mind busy.Good luck.
Dear Matt, so glad to hear that all tests are normal up to now. I am not sure there is a human being who could go through CC without getting the emotional ups and downs. I always thought I was ‘wonder woman’ when I took care of my Teddy for 5 years. Yeah, well I am paying for it still 3 years later. One needs to be strong but you need to also let the emotions come out!
In December I reached a point where I could not stop crying. I had an appointment with my GI and he put me on a very mild antidepressant. I had never taken one in my life and do not take well to new RX. I am on Lexapro 10mg a day. What a difference and NO side effects. But everyone is different. The fact that you are thinking about it means it is time to ask your Doctor. It does not mean forever but to help you through these tough times. You never know how strong you are until “strong” is the only choice you have! But a little help can help a lot.Matt….you have gone through quite a bit and you still are in the healing process. Emotions will be all over the place. I would seek the advice of a counselor as it provides a safe place to scream, cry, and simply let it all hang out.
You might want to consider reaching out to our very own Dr. Giles
http://www.cholangiocarcinoma.org/ask.htm
He is a wonderful resource to us all and has offered his services to our members since the inception of this discussion board.
Hang in there, dear Matt and continue to speak, write and share with this group of understanding and kind people because; we are in this together.
Hugs,
MarionThanks for the info and replies!
I had an appointment with a local liver surgeon here at MCV in Richmond, VA today for what I thought would be a post-surgical follow up visit. After getting some blood drawn and waiting for 90 minutes I never did see the doctor, only a pair of nurses. They’re scheduling a scan for me in the next week or two to establish a new basline of my anatomy after surgery and make sure things look ok. Of course they’ll also be looking for any recurrence too. I asked for an MRI vs CT since my last scan at MCV was also an MRI and they could easily compare the two.
Since I waited for so long, my labs were ready and they all looked normal, which is great. They didn’t run a CA 19-9 so I asked if they would and they agreed. MCV uses different equipment than Mayo for the test. Mayo uses a CA 19-9 assay mfg by Beckmann Coulter and performed on a Unicel DXI 800 and warned that results not obtained from the same setup can’t be used for apples to apples comparisons. It should be interesting to see where the MCV number comes out nonetheless.
I’m scheduling a trip to Mayo for June that will include a CT scan and CA 19-9.
They are also scheduling a visit with an oncologist for me in the next few weeks. I still have at least 2-3 weeks to go before my surgical wounds heal so my hands a tied when it comes to starting adjuvant chemo anyway. More time to dwell on the decision and gather facts and advice.
Trying to stay positive and live a day at a time… It’s the hardest thing! Finding myself brought to tears at the slightest thoughts and sights… Other than “talking” with all of you wonderful people, any suggestions to seek counseling/group/self help in that area as well as reducing stress? I’ve always been a worrier and this really cranks it up!
-Matt
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