lainy
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Dear Janet, I am so very sorry to read about Jim’s “relocation” and as he fought for his country with dignity, pride and honor he also gave the same fight to this CC!
Janet, my Teddy also relocated on Dec. 6th 5 years ago.
Below imagine the poem is from Jim to his sweet Janet:If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
I’ll not be far away,
With petals of love and tenderness,
I’ll pave for you the way.
To join me in our sanctuary,
And ne’er again we’ll part.
Grieve not for me, my Darling,
I live within your heart.
Take joy again in living,
As you did in years gone by;
God knows what of he’s doing,
And not be questioned why.
Grieve not for me, my Darling,
My life with you on earth
Each moment filled with happiness,
And love so few be worth.
I’ll be waiting for you Sweetheart
Where skys are ever blue,
With eager heart and open arms
Patiently, for you.
Grieve not for me, my Darling,
May faith and my love keep.
Your soul filled with contentment
Eternally, I sleep.Oh, Jack I am so excited for you and what a fabulous family you have.
I fully understand the weird good coming from CC.
One of my greatest memories about Teddy (we were only married 16 years) is that when he was in Home Hospice, every time a new nurse came he would say this is my wife, Lainy and we are on our honeymoon! Not that he was never anything but a romantic Sicilian but everything seems to have magnified meanings! ENJOY, ENJOYSuggi, when my Teddy started this trip 10 years ago they also told him after his Whipple that chemo will not work where the CC was located. BUT we did cyber knife. And it worked for a couple of years. Has Cyber Knife ever been mentioned?
Hi, Irish! I always wanted to say that!! Thank you very much. Bile stents can be very tricky. My husband had a wonderful Radiologist and never did have a problem except what they labeled as Blood Infections we would go immediately to the hospital and he had an IV of Levaquin. Took it right away. A high fever and the deepest chills were the first signs. Outside of the infection many radiologists just don’t have the technique down perhaps because of a small number of patients who need the stinting. The other mishap, is that the stint slipped.
I would report all these things going on to the main Doctor. As bad as CC is there is no reason for a patient to have to suffer. I totally believe with you that something may be lurking, like a slipped stint. Stinting usually makes one feel better not worse! Hiccups is another factor in a “disturbed” tummy. After Teddy’s Whipple he had them for almost 3 months constantly. Not one Doc or Nurse could help. Finally a friend of ours who was a Pharmacist, hooked us up with “Brioske” (sp)
that comes in a blue container and is much like Alka Seltzer. ONE! ONE dose and after 3 months the hiccups left.Hazel, am I correct the Doctor just wants to wait a year for a new trial? No other treatments? UNACCEPTABLE if I read it right. You need to go post haste for another opinion. NO Doctor on this Earth is going to wait a year when someone has CC, I wonder how many CCers he has treated? Is your daughter his first? No wonder you are upset. If the Gem/CIS did not work there are other chemo’s he can try. I hope you and your daughter can take a long walk on the beach tomorrow as you really need to have a Mother Daughter talk. Looking forward to the outcome of your talk and hoping you can get to another Doctor soon.
Mac, I know but we have had some members from Ireland. I think if you type Ireland in to our Search Engine above some posts will appear from those members. Perhaps you can find someone near you.
Dear Mac, welcome to our remarkable family but sorry you had to join us. This is the best place to be for CC support.
I am very sorry to read about your Dad and know that most Diagnosis of CC are reached later not sooner. We all know exactly how you feel, kind of like being hit in the stomach with a baseball bat. You are doing the right things especially the reading up on CC as knowledge is really our best tool for fighting this monster.
Make sure Dad is at a hospital and with a Doctor who are experienced with this strange and rare Cancer. Also keep in mind that we are big believers in 2nd and 3rd opinions. Not every Doctor sees things the same way. The official DX has not been given yet, right? It really helps if the family is all on the same page as a team but they may not have the incite yet to deal with this as you have. Keep the lone voice yelling! The squeaky wheel gets the oil.
Please keep us updated on your Dad as we truly care. We are here for you and your family.Dear Hazel, welcome to the best place to be for CC support but so sorry you had to find us. It is especially heartbreaking when young people get CC as we just don’t why, not yet anyway.
Surgery is one of our most favorite words and your daughter is definitely doing the right thing by getting another opinion as that is another one of our favorite things….2nd, 3rd even 4th opinions! Different eyes and minds see different things. We have had many CC members with the same type of Diagnosis and have had Chemo after surgery. Your daughter has youth on her side and the fact that this was a successful surgery. We always try to remain realistically optimistic.
I am sure that some more members will be along with their advice. Please keep us posted as we truly care.Hello, Jack and welcome to our remarkable family but sorry you had to find us. This is the best place to be for CC support. CONGRATULATIONS on Diane’s surgery! Surgery is one of our favorite words. Now, with that said, I would definitely seek a 2nd and if need be a 3rd opinion. To come that far and then be told it is iffy….I would definitely get that other opinion. Like you say Diane is young and otherwise healthy and deserves more of a chance. Different eyes and minds see things differently and if someone else is in agreement then you will know how to proceed. We do have some members who have been treated at Cleveland Clinic and perhaps they can chime in here.
Please keep us posted on Diane as we truly care and below is a site you may find helpful.P.S. Could you please delete 3 of your posts that appeared or I am afraid people will be answering on all 4 and you may miss something or they will.
http://cholangiocarcinoma.org/newly-dx/
Dear Maribel, I am glad you found us but sorry you had too. Yes, unfortunately this is the way CC works in the beginning on most of our members. Hopefully the radiation will bring the tumor down in size so that your husband can have the surgery. We LOVE the word surgery. May I ask your husband’s age? Also where he is being treated? You want to make sure he is at a hospital and with an ONC who has experience in treating CC. Where is his CC located? Did they say why radiation first and not chemo? Wishing him the best on the radiation. Please keep us posted as we truly care and below is a site you may find helpful.
http://cholangiocarcinoma.org/newly-dx/
Hello Ben, Sounds like a good plan for tomorrow! Much better! I am hoping for the best for you.
For the posts, please DELETE the one with no answers on it. Under the window to post you will see a delete button.
Then you posted this one today 2 times so please again delete the one with no answers. Other wise the posts are going to get lost and you will not get the answers. So keep one of each and make it the one that was answered.Looking forward to hearing the outcome tomorrow!
Dear Katia, I am so very sorry for all that your family is going through but glad that things are starting to turn around.
When my Teddy was in Home Hospice, like your palliative care, we could order helpful things from them like the wheelchair. I had also ordered a “commode” to keep by the bed so Teddy didn’t have to be transferred to the loo. We were lucky as well to have him in a hospital bed which makes it easier for the patient to get up and out of bed. I am sure that being home is the best medicine Dad could have. I wish for his continued improvement. Yes, please try to keep us updated and thanks for this update, I sure know how busy you and your Mum are.Dear Ben, Welcome to our remarkable family but sorry you had to find us. This is the best place to be for CC support.
You want to make sure that the hospitals your wife has been to are experienced in treating CC. While it is very difficult sometimes to diagnose, my best input would be to seek a 3rd opinion. Did they stent her because she Jaundiced? She really needs to see an EXPERT in this field so that treatment can be determined. We have a Search button at the top of the page and perhaps if you type in Nashville there will be some posts you can use. I am also sending you a post below that you may find helpful. There is nothing wrong about asking the powers that be at the hospital if they treat many CC patients. This looks like a slow weekend here because of the Holiday but perhaps others will be along with some more advise. Can you please move your post over to INTRODUCTIONS as I don’t want it to get lost here. Do you think she is tired from the procedures? If she is not eating that can also make her tired. You might want to try some Nutritional drinks. My husband liked the Vanilla Carnation Instant Breakfast and I would blend in a banana. It can be taken in place of a meal or with a meal even 3 times a day. May I ask her age and if she is in good health otherwise?
I just reread your post and the fact that it took 3 times for the stents to be placed I have a feeling they are not used to CC. Best of luck and please keep us posted.http://cholangiocarcinoma.org/newly-dx/
