lainy
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Julie, As you know I already “spoke” to you and I am still banking on this situation to be just an idiosyncrasy. It was also odd that Mel’s wife went through this same thing and nothing further developed. Mel asked me how am I able to get so close to someone on this Board to the point we feel we are Sisters and take this roller coaster ride over and over and I answered, “How can I not?”. I am glad you will not be able to see my cheerleading outfit that I will be wearing on Tuesday. Please know that I am with you all the way and one day we WILL meet here on Earth!
Dear Jojo, Welcome to the best place to be for CC but sorry you had to join us. I think when a patient is jaundiced the jaundice has to be treated before anything else can be done. You need to garner a team around you locally as most likely one of the bile ducts is blocked. An Oncologist will set up the procedure for your sister to get the stents needed to unblock the ducts. Your Sister will get relief quickly. The blockage can cause major infections. Then you may want to continue with the ONC you find and see what he suggests. Most often it is the bile ducts that will cause jaundice. Much good luck to you. Please make sure you use an ONC and a Hospital very familiar with CC.
Dear Daisy, when Teddy had radiation, the rad was on the front but he developed a rash on his back. No pain but he was extremely tired for about 2 weeks. We used to think, ah, its working!!!
Red, it is puuuuuurfect! Will see you at 1000AM MDA coffee shop. I will be the short Grandma with the white hair. BTW they have a fantastic gift shop, I think on the 2nd floor.
Thank you CATMC! I miswrote when I meant to say Princess Margaret. Ya think it is easy to grow old. Now that you helped us out, please introduce yourself and tell us something about you as we are a curious lot here and you never know when one story will help another member.
GREAT, Red. I am at your command. The 2nd week in Nov. is wide open so I am at your beck and call. I can meet you at the hospital and depending on the time frame we could do lunch there. Or in the neighborhood. Funny, my best lifetime friend is a gal named Marlene and she has red hair and born on Valentine’s day and goes by the nickname, “Red”. I call her Marlene and she calls me GLB for The Gutsy Little Broad! Looking forward to meeting you.
STICKEY: Dearest Lynn, I am so very sorry to read this. All I can tell you is how I felt when Teddy and I reached this moment. Teddy was very strong of mind and did his best to make it a more soft landing for me. When Hospice started coming to the house he would say we were on our Honeymoon. We talked about everything including planning his Memorial together as it involved his Catholic Church and my Temple. I allowed visitors at no more than 2 at a time and no longer than 30 minutes at a time. I did not want him to zap his small amount of energy. I did not force feed him so to speak but made small portions of things he asked for. His biggest request was for me not to let down in front of him as he had steeled his mind for the journey. I would get in the car and put “MaMa Mia” on the CD and drive around for about 20 minutes singing at the top of my lungs, surprised I was not kicked out of our retirement community. But it worked for me. I was ready to go back home to what ever faced me. He was the one going through this, there would be time enough later for me to let loose. Of course I can’t remember everything but I found some comfort in writing a poem that says what I was feeling that I would like to share with you. I wrote it 5 days before he “relocated”. If you need to ramble or have any questions, please do not hesitate to email me. I am here and can be right with you.
PRECIOUS DAYS from Lainy to Teddy Bear
Time is growing closer I can see it in his eyes,
Time is growing closer but we’ll have no sad goodbyes.
Memories abound from our precious moments spent,
To God it is I’m sending the most precious package sent.These last few months of knowing, we’ve made a Honeymoon,
In my mind a vision of a beautiful, eternal afternoon.
He still is my charming Prince who taught me how to love,
And someday we’ll be together in Heaven up above.I will see him riding stars I will see him in the moon,
And someday you will see us dancing to our favorite tune.
He will touch my face so gently like he’s known to do,
It’s not goodbye forever with memories bad or few.All our love my sweet one is ours to hold so tight,
Until once again together on that mystical magic night,
We will be again united to celebrate our dance around the sun,
And know that our eternity together has only just begun.Red, OMG, MDA Banner is about 12 minutes from me. Let me know if you would ever like to meet at MDA and we can visit. There is nothing as special as 2 CC patients or Care Gives to meet. You then feel you are not alone. All you have to do is way the word!
Patricia, nothing about this cancer or treatments is normal. 2 people can have the same diagnosis yet take to the same treatments differently. We call CC our roller coaster ride as one day is up the other is down. The first lesson is to learn to be very strong, You never know how strong you are until “strong” is the only choice you have. The more you read the better advocate you become. We also have a SEARCH engine at the top of the page and if you type in 1 -3 words many posts will appear on that subject. My husband was treated here by the best ONC who has retired. If you ever need to get a 2nd opinion which we highly believe in, contact the Ironwood Cancer Center at Chandler Hospital. That used to be his office. What part of town do you live in, I am in Gilbert.
Here is also a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/Dear Patricia, CONGRATULATIONS on your husband’s surgery, Miracle of Miracles! As you know by now it is the ultimate goal for every CC patient.
You bring back memories to me, when my Teddy was DX he had terrible itching for 3 weeks while I never noticed his color slowly changing. At first we thought he had become allergic to tomatoes. What!! A Sicilian allergic to tomatoes? Then I thought it may be the detergent I was using. When the DOC said he was jaundiced I said, “You know I don’t like you in yellow!”. What did we know? Right? Reading brings knowledge and we now have so much more to read than we did 10 years ago. My husband never read here either but I did tell him about others and what was happening.
It is normal to worry but I felt why use this valuable time for worry? Try to be as normal as you can and I am a true believer that a patient has the right to know what is happening and what may come. Letting it all out in the open can sometimes cause a cathartic release so that you can continue forward because life is for the living! We talked about CC a lot and life and beyond.
You can turn your Birthday in to a celebration of life as that was the day hubby began to live again. What you are going through is so normal.
Where are you from and where was he treated. KUDOS to his wonderful Doctors! Don’t be a stranger now and please keep us updated on his progress. P.S. I am glad you joined us as you will find the most loving, caring and smart people right here on this Board.Dear Jennifer, welcome to our wonderful family and am so sorry to read about your Father. I am going to cut right to the quick here and you NEED to be at a Hospital who has experience in CC. I do not know where Brandon is but if the Doctors admit they do not know what to do, your Father needs to be moved immediately. I do know we have had quite a few patients who have received the proper care at Queen Victoria in British Columbia, 1200 Newlands Rd SS 1, Revelstoke, BC V0E 2S1 . I am sending this to you quickly and hope that others chime in here also quickly. I am sending you prayers that you can get some help for your Father. Please let us know how things go for you and for him.
Hi Janet, a lot of people go way back when searching for some answers from other patients and Care Givers. When they find a post, no matter how long ago, that answers their questions it is wonderful that they found such a helpful post. They want to share with other members that they found a great post that still applies to today’s problems with CC. We do go back 10 years but because of the rarity of CC quite a few posts from ‘way back’ still apply today. I get notes from ‘new’ members that they read about my journey with Teddy even though it started 10 years ago. The ‘sharing’ on this site is what helps to make it the best site there is for CC.
