lainy
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Hi, Daisy. After my Teddy had his Whipple he would get very tired and went on a regime of B12 shots once a month. Made a huge difference and we could tell about the beginning of the 4th week his energy level would zap. The other thing I was thinking about was Thyroid. Could it be that? And, I know that depression can all of a sudden just hit so it would not be a bad idea to mention this to the DOC. Sometimes our patterns just take a change when we are going through or have gone through big changes to the body. Sometimes when I have trouble sleeping a cup of hot tea helps or I will put music on very softly. Best of luck.
OMG! My son from another Mum, how did you know??? You know me too well. I actually fell down 3 steps at the hotel in Montreal and caught a Montreal flu and was in bed on the ship for 3 days. Poor Mel. Otherwise it was lovely. Fell in love with Quebec and would go back there for a week. Glad to be back home. Yikes! Home Mum is ok and please give her a kiss for me!
Julie, Julie, Julie…….I knew you would kick it to the curb! What a command performance Sissie! Yea! Tumor is gone like a bad dream and I am thrilled beyond words. I would be doing my cartwheels but don’t want to make you laugh too hard! Please take it easy and let everyone else wait on you now. YEA! YEA! I am sure Tup is also on cloud 9!
Thank you, Gav and Deb. Really getting excited as we are going on New England Cruise with 3 days pre Cruise in Montreal. Mel got me a tiny French Dictionary! OY!
Dear Janet, welcome to our remarkable family but so sorry you had to find us. You will find the most loving and caring people in the world, right here.
I too live in the Phoenix area, in Gilbert. My husband had the CC and went to a fabulous Doctor here who has retired but the rest of the office is at Chandler Hospital also know as the Ironwood Group. I know they are familiar with CC. Other opinions are very important as different Doctors see things differently.
Being itchy can mean the bile ducts are clogged. Do you have stents in the bile ducts? What is Mayo doing for you for treatment? You really need an ONC who has experience with CC. I had gone to MDA and it is actually a Banner Hospital and when I went there I was told by the ONC I saw (for something else) that he had treated only a couple of CC patients.
What part of Phoenix do you live in? Perhaps we could meet and talk if you like. I will be going out of town tomorrow and will be back September 4th. It is always a wonderful thing to meet other CC Caregivers and patients as you then realize you are not alone. Below is a site you may find helpful:http://cholangiocarcinoma.org/newly-dx/
Dear Cookie, just a note to say I am always thinking of you and as we all know stable is a very good word. Have you tried any of the nutrient drinks like Boost or etc? Always thinking about you and of course wishing for the next scan to show more shrinkage!
Dear Sharon, I am so very sorry to read about Phil. Wish I did not have to say, “welcome to our new normal”. I am so happy that you have decided to stay aboard to help others. I came aboard because I felt the need to pay it forward for our Board who got me through this journey and it makes me feel so good and I also know Teddy would want me to do this. I promise you that one day all the tears and memories will only turn into happy tears and memories. I a, sue Phil is very proud of you and I know you will feel his loves always around you.
Dear Julie, great post and powerful words from a patient’s point of view of the Caregiver. Almost every time Teddy asked for something he would apologize for putting ME through so much, even if it was just a scrambled egg! Sometimes I thought that was worse to hear than nothing. I would do it all again without his apologies if it would bring him back. Being a Caregiver is not easy, I think, mentally. And that is why we handled it with humor. Honestly, the humor really helped us both. Probably could have written a TV Sit Com from things we said and did.
You know, Sister Julie, I will be cheering for your Ablation like never before. I know you wanted this and girl, you fought like crazy and got it! Best of luck and I will be thinking of you!Dear Stephanie, through it all we try to stay realistically optimistic. We have seen some Miracles on this Board even for Stage 4. The best you can do IS to make the most of each day which we all should be doing anyway. When you say you feel like the Mom, I can relate to that. I am 76 now and my daughter is 54. About 2 years ago I asked her if she noticed a change in our relationship, that being I am now the kids and she is the mother. I do not make any decisions without her input and I am truly grateful for her as your Mom is with you. I better watch my step or she will put me in time out!!! You never know how strong you are until “strong” is the only choice you have!
Oh, Scott, that is good news indeed!!!! YEA!
Sorry about the Gall Bladder, that can be a painful one. So glad everything is looking good now.
Dear Stephanie Marie, welcome to our remarkable family but sorry you had to find us. I am so sorry about your Mom’s diagnosis and we are a curious bunch here so could you tell us a little more? What was her Diagnosis and where is she being treated.
Yes, it certainly is an upside down disease and in the beginning one feels as though they have been hit in the stomach with a baseball bat. Has a treatment been started? Below is a site you may find helpful and please keep us up to date about mom’s progress.http://cholangiocarcinoma.org/newly-dx/
Dear Brian & Barb, Welcome to our remarkable family but hope you may not need us. In case you do need us this is the best place to be for CC. You are doing all the right things but know that sometimes it is a difficult diagnosis to confirm. We have had quite a few members at Moffitt and getting other opinions is so important, like I said all the right things.
Where does all this sit right now, like what are they suggesting? The only suggestion at this point in time would be to see Dr. Javle at MD Anderson in Houston. He is one of the tops in the CC field.
The not knowing and the waiting is quite burdensome. Please keep us updated on Barb. Below is a site you may find helpful just in case……http://cholangiocarcinoma.org/newly-dx/
Dearest Rangani, I am so very sorry to read about your dear Mum. Please accept my humble condolences.
Death is nothing at all. It does not count.
I have only slipped away into the next room. Nothing has happened.
Everything remains exactly as it was. I am I, and you are you,
and the old life that we lived so fondly together is untouched, unchanged.
Whatever we were to each other, we are still.
Call me by the old familiar name. Speak of me in the easy way which you always used.
Laugh as we always laughed at the little jokes that we enjoyed together.
Play, smile, think of me, pray for me.
Let my name be ever the household word that it always was.
Let it be spoken without an effort, without the ghost of a shadow upon it.
Life means all that it ever meant. It is the same as it ever was.
Why should I be out of mind because I am out of sight?
I am but waiting for you, for an interval, somewhere very near, just round the corner.
