linda-z
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Lainy, I wish I had half the “gut 101” training that you have, and the love that you have in your marriage. Thank you for your words of encouragement, now and always.
Linda
Thanks all for your support. I mentioned cholangitis to both my PCP and the Mayo Dr., but by PCP didn’t really know what to do, and the Mayo Dr. said just to take pain meds. I mentioned a blockage also and he said if you get a blockage, you will turn jaundice and then the drs. can deal with it then.
I know he couldn’t treat me (my referral didn’t allow him to), but when I asked if I should have it checked out, he didn’t offer any positive opinions on that. That’s what I was dissappointed about also. Now I need to go to another oncologist and get his opinion about further treatment on this point, not to mention I’m not ready just to wait until major things start to happen.
As far as my husband goes, he really only likes to get involved if things go well. And if it appears that it might be difficult for him in some way, he wants out. Sometimes I feel that I should have listened to my family long ago, and divorced my husband. Then maybe I would have someone else more caring in my life who would want to take care of Kevin when I’m gone. Jim just thinks of all the negatives and rarely of anything to do with anyone else. He has his own issues and dwells on them more often than anything else.
Linda
Kris,
I was so happy to read that you are home! It truly is the small things that makes us happy. Just having OUR things around us; husband, couch, your own pillow, kitties!; makes things seem a lot better.
My best to you and Hans, as well as my prayers.
There are a few people on this Board that I draw strength from, one very special one is you. Keep up the good spirit….your work is not done here yet. Enjoy being home.
Many, many hugs from across the miles,
LindaLainy,
I want to tell you how much you have impacted my life on this board, and I just can’t find the special words to do that for such a special lady. Everything that others have said are true, and more. You life me up when I get to having the pity party for myself, that I feel I just can’t stop going on. You are the most courageous person I’ve met, and to have such love that you and Teddy have, makes you both so blessed.
I wish for your continued blessing in everything that comes your way, as well as for all of us on the Board for having known you. You certainly are like my family. Keep on keeping on. My very best prayers and wishes for you and T to go as far as you can. I’m so glad that T got to go to the golf awards with the Shriners.
My love to both of you.
Linda
Lainy, just checking in and saw your post. Thanks for the advice. It is very good and something I had not thought of at all. This is a small theater and the tickets were not very much at all, so I would think my brother would not mind not going especially if I told him why. Thanks again. After a long ride too, it does sound better to just relax. I’ll be a little nervous anyway, so why not enjoy the quiet instead.
Kathy B. – about not taking Ibuprofen….none of my drs. ever mentioned not taking specific meds, only that Tylenol affected your liver and Ibuprofen is hard on your stomach. Did the Mayo drs. say why Ibuprofen would be bad to take? Maybe all the more reason why I am seeking new drs.
Thanks all,
Linda
Lainy,
I am so sorry for your newest situation. You are a tremendous rock for T and help with things involving the rest of us on this board as well with such knowledge and respect. I hope to give some of that back to you as well.
I just wanted to also add my prayers and good wishes to you. It would be really nice for us all to meet someday, but over the miles will have to do for now. Lots of hugs and memories to you and Teddy.
Linda
Kris,
I have been off the board for a while with my own difficulties, but every time I see a post from you it lifts me up. You are so strong and courageous that when I hear of how you are handling your CC, I feel lifted up and that I can handle what is thrown at me in a better frame of mind.
I am so glad that you had your sister with you, and that you have a wonderful oncologist to care for you and your wishes and needs. You seem to be truly blessed in those areas, and especially with Hans too.
I’m sending you so many hugs and prayers over the miles in hopes that there will be something that can be done to continue your fight for a long time. Sharing your positive attitude, I know all of us can deal better with what we have to deal with too. Thank you for your giving, and I hope that you can get a little bit back of what you have given to us.
Stay strong,
Prayers to you, Linda
Thanks Ironbark,
I agree, we are all a big family, worldwide. I don’t know what I would have done without this board for its knowledge and support.Hang in there, and keep coming back. We all should, for each other!
Linda
Moontje,
Great news on 3 years for Tom and you. Heres to many continuing years as well. Thanks for the great update.
Linda
Lainy,
Good news on both fronts. Glad to hear you are good to go for 4 years now! And glad that T is getting some better sleep. There are a few people on this board that have grabbed my heart, partly because I have been “with them” longer than some recent postees, but also because of the strength that you all show in fighting this illness. Whether it’s the person who has CC or a caregiver, the resolve and courage to so many others that comes through in your posts is amazing. You and Teddy are in my heart always.Here’s hoping for more showers for “cute” Teddy.
Linda
Kris,
Just wanted to say you are always in my thoughts and prayers. You are such an awesome woman with your strength and courage for what is literally thrown at you, but you manage to get through it. You are my inspiration and others as well I’m sure.Here’s hoping that the doctors will find out what is not working and fix it again. They came up with this plan, so why not have another soon? Love to you and your family from across the miles.
Linda
I agree SO much with all that is said here. Just the other day, someone had a TV on in our office lunchroom and a co-worker who’s mother had breast cancer and was cured was sitting there. A news program came on about breast cancer funding and research and I got furious. My co-worker spoke up and I explained that it was so wrong that my cancer is so rare that little is given to fund research for it (or other lesser known cancers), but that breast cancer is known everywhere and their campaigns are everywhere, that it seems to be “fashionable” to donate to the Susan B. Komen foundation. My co-worker started to say that so many get breast cancer, and because it is so curable now, that it helps when people are made aware of that. I said then all the more reason why people should donate to a CANCER fund that all cancers can benefit from and make people aware of ALL CANCER detection so that others can be helped more through research and get “more curable” results. He backed down and agreed. End of discussion.
Thanks Lisa for bringing this up. It was good to vent. By the way, haven’t there been a few well-known athletes or actors, etc. that had CC? I know Walter Payton had liver cancer, but didn’t know if it was CC or just liver disease.
Linda
Dianne,
Sorry I’ve been “away” from the board for a while and as many know it takes a long time to get caught up on everything.I had surgery Apr 09, with clear margins around surgery and lymph nodes. I DID have lymph node involvement however. My surgeon told me “they usually don’t do chemo in this type of cancer”. His words! I met with an Onc. who recommended chemo “as a precaution” as to “better say that we did rather than to wish that we had” kind of thing. My first CTs were cancer free….the next set showed metastasis and return of tumors. I didn’t see the Radiation oncologist until after the metastasis showed up, and then HE asked ME “why wasn’t radiation done after surgery?”
After gaining much knowledge on this board, I have learned to ask tons of questions and do everything that you can and that is available, as the onc. more-or-less, better safe than sorry. Even though he didn’t go far enough in his thinking for me.
Good luck, and keep posting your progress. I will be going to Mayo Rochester soon too. I look forward to a new opinion.
Linda
Val,
I absolutely was laughing out loud at your posts. I LOVE your sense of humor. Especially with this CC that is the only way to handle it. Thank you for coming back to the board as we can always, always use more sense of humor to lighten things up.
AND drinking the bile sounds VERY bizarre. I wonder how they “discovered” that this could be an option? My father’s family was from England (my Dad being the first one born in the US), and we enjoyed Monty Python and Benny Hill quite often.
Take care and hope your future days are less busy!
Linda
Isisman,
I just have to vent myself here. Although my heart sincerely goes out to you and your husband, I can’t help but feel resentment in your posts. You say you love your husband so much and want him not to suffer, but yet maybe the one thing that could help make him better, you don’t even consider. Wouldn’t it be terrible if you found out that he was suffering from something yet undetected that was easily correctible? I have a relative that has fibro-myalgia that is not being controlled with pain meds, and she suffers each day. No, not in the extreme pain that your husband is in, but she doesn’t give up and has sought many other opinions.
It just doesn’t add up that most things seem to be checking out ok except for the nodes, and the extreme pain. That is why so many people on this board are trying to help you with their opinions….and most to get second or third opinions. They feel for you as do I, and the pain you both are going through. If this was happening to me or a member of my family, I would feel my doctors don’t really know what’s going on, and find someone who might have a window into the problem.
You say your husband can’t travel, but he seems to be doing little things around the home, and walking 2 miles a day! I can’t even do that! And what’s to say that you would have to travel a great distance? His pain is making his blood pressure go out of whack, but it will not kill him. Something else will, but it may take quite some time. I hear that you want his pain to stop, but in getting another opinion, isn’t there a chance of that?
I wish you all the best, and do hope you both get comfort soon in all that you are working on.
Linda
