Tonight I spent some time on the phone with a man that is several weeks past his 12week of recovery from the "take down" or 2ND part of the two part surgery in my future. It was really nice to talk to someone "live" about this. The surgeon....Dr. A said he would find a patient to talk to me and he delivered. I still am so apprehensive about doing this surgery but I don't have a choice. That IS the toughest thing to wrap my mind around. I mean it's tough to know that your body is going to be taken apart and re worked when you are 1) feeling wonderful and 2) Don't have cancer. However #1 could be erased in a heart beat(I've seen that movie before) and #2 true I don't have cancer...yet that is. However, those cells are changing every day and with the grade that I have, they might/could change prior to surgery. Lord bless me that won't be the case.
Well this real person, Let's call him Mr.D. Was kind, blunt, funny and honest. He painted good pictures for me and I am thankful for "meeting" him over the phone. He gave me things to think about and set my mind at ease over items that I was really all wrapped up in. For example, I was really caught up in my mind about this evil little drug called prednisone (it's a steroid). I had read that some patients were placed on this after the surgery and having been on it and having some terrible side effects I was not feeling the love about having to revisit this drug. Thankfully he said he hadn't used it during his recovery and there was no mention of ever having too. Natalie (over on my blog roll) also let me know that she didn't use it either but a second voice on the subject really settled it for me.
So tonight, I think I can rest a little easier. I have become a little consumed with all of this. Which leaves me tossing and turning at night. Not a good thing when you have little ones to love on the next morning.
Praying,
ML
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I'm so happy you were able to speak with someone who's been in the trenches, so to speak. It's always wonderful to have the support of those you love, but it's another to have the support from those who've gone through what you're about to. Keep us posted as things fall into place and dates are scheduled:)
ReplyDeletePraying for you!!!
ReplyDeleteHi,
ReplyDeleteMy wife found your blog while searching for information about ulcerative colitis + cancer + surgery. I've had UC for about 25 years, and at my last colonoscopy about 2 weeks ago, the Dr. discovered a small, strange-looking area that he termed a ''blister' (not the exact name for it). Anyway, he did a biopsy just to be sure, and it turned out to be malignant.
It's a very small area, and did not even show any thickening of the colon wall in my CAT scan, nor did it show up in an ultrasound. However, like you, I've got to have my entire colon removed! I'm sure we have similar thoughts and feelings about it - it seems like a shame to remove the entire colon when there's such a tiny area with a problem (especially in your case since you don't have cancer cells yet).
However, as far as we can tell, it is standard medical practice to do so. The surgeon told us that it is considered to be malpractice not to remove the entire colon in UC patients with dysplasia or cancer. She put it this way - they can't biopsy every bit of the colon, and once the UC starts to show signs of being cancerous, the risk is too great to leave the colon in there.
In fact, I was relieved to hear that the J-pouch surgery is available and would be done, so that the 'bag' will only be needed for 3 months or so.
Anyway, I just wanted to tell you about my experience so far. It's frustrating, isn't it? I'm sorry that we have to go through this, but at least we should be thankful that they found our bad cells before they spread any further!
Good luck to you and God bless you. He and our families will get us through this.
Best wishes,
Tom Dickens
ML, we are praying for you every day. I so know how it feels to not have any control. I can imagine how hard this all is for you. You know you have wonderful support in your friends and family, and even strangers on the internet, as the above clearly shows. Keep us posted.
ReplyDeleteLove from the West Coast...
ML, STAY OFF THE INTERNET!!! You will just work yourself into a frenzy with all the what-ifs!!
ReplyDeleteI want you to talk to a friend of mine - she had to have the surgery, she is a few years out now. I think it has been, like, 8 years since she had it.