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Dear Rose,
I think this is where openess and honesty will be the best bet. You seem so articulate and caring for your partner in expressing your concerns and my gut feeling is that you will somehow find a way. Talk with your partner and get their feelings and concerns out “on the table”. Sometimes it’s best to just “shoot the elephant” in the room. This may not end up being as big a problem as it seems.
I think this would be a great question to get input on from Dr. Giles.
You and yours are in my thoughts and prayers.
Hugs to you and yours,
Pam
This is wonderful! Try and stay strong and rest whenever you can. The numbers drop is dramatic!
Stay positive and know that we are all here for you and celebrate this with you!
You are in my thoughts and prayers!
Hugs,
PamSophie and Holly,
May God hold both of you tightly in his hands. My heart goes out to you and your family. You are all in my thoughts and prayers everyday.
You are not alone in this journey.
Hugs to you both!
PamDear Oscarcamacho243,
My Mom (77) had 5 rounds of Oxyliplatin and Gemzar each two weeks apart. She was amazing and had absolutely no side effect except for the cold neuropathy that lasted two days after each treatment. She was mostly miffed that it curtailed her having her milkshake on those two days. I was amazed that she never experienced anything bad with these two drugs. She also later added Nexavar to the mix and then proceeded to the Xelolda.
Just remember everyone is different in their tolerances and this monster of a disease is different for everyone as well.
I hope for the best for you. You and your family will be in my thoughts and prayers.
Hugs!
Pam
Kris,
Wait til you get the oxyliplatin goody bag. It came with a large pair of winter type gloves so you can be protected against the cold neuropathy…
lol…..
Pam
Carol,
My Mom has now been released into Hospice care. One of the grief articles I was reading had the following statement:
GRIEF IS NOT AN EVENT….IT’S A PROCESS.
I believe this is so true. It starts with the anticipatory type grief and then seems to go on and on. It’s so wearing and draining.
You are entitled to every emotion you are feeling. You have so many people depending on you and you ARE holding everything together.
I check your blog daily. You and yours are in my thoughts and prayers.
Love and Hugs,
PamBarbara,
We are exactly in the same place. I posted recently under general discussion and you can read my post. I’m sitting here waiting for the social worker and nurse to come and introduce themselves.
Mom is having a confused day and is sure Dad and I are “keeping secrets” from her. It breaks my heart to deal with her fears when the confusion doesn’t let me get through to her. I would just like to scream and get in the car, pick a direction, drive til the gas is gone and then pick the next direction!
I know in my heart this is the right decision for Mom, Dad, My sister and myself but it really is the hardest thing to do.
I’ll write more as soon as possible. My favorite hymn that is running through my head is the old song…”I’ll fly away…………..
Be strong and consider yourself hugged.
Pam
David,
I would raise “Cain” with these people. The WHOLE point of getting a power port as opposed to the other kind is so that it can be used with contrast!
It’s hard enough to have this cancer without having to continually educate the medical community!!!!! (And I’m in the medical community!!_
Keep pushing. Hang in there and know you are in my thoughts and prayers.
Hugs!
PamMagic,
I believe this site is for everyone dealing with ANY part of this disease. I am humbled by the love, compassion, determination and will to live that is shown by all who post here. We are so fortunate to have found each other on this site.
I celebrate with the victories and grieve with the setbacks. Both are a part of life.
Please continue your journey with us and let us help in any way we are able. You are in my thoughts and prayers.
Much love and Hugs.
Pam
David,
Hang in there. Getting a power port was the best thing my Mom had done in this journey. It’s the type you can shoot contrast material into and was helpful in her scans.
It made getting the chemo a breeze as well as bloodwork much easier.
Stay strong. You are in my thoughts and prayers.
Hugs!
Pam
Welcome Elizabeth,
I’m sorry you had to find us but I’m so glad you did. You will find some of the most amazing, compassionate people on this site.
We are all only a keystroke away. You and your children will be in my thoughts and prayers.
Hugs,
PamHi Marion,
I’m getting ready to get on the road again and just read your post.
Mom is on almost no medication and this has gradually been progressing for the last 6 months.
All the medication she takes is an 81 mg. aspirin, her blood pressure medicine and the Xeloda which as been stopped while she in the hospital. She hasn’t taken anything for pain (since she has none most of the time) except an oxycodone in the last two days. NH levels are normal but potassium was a tiny bit low. She got some by IV and by mouth since being in the hospital.
Her Mom suffered from Dementia and I’m wondering if this possibility for Mom has been exacerbated by the trauma of the cancer.
Great! Another thing to worry about….is dementia hereditary? I know it is since you CAN get it from your children but I wonder from your parents???…lol I won’t know if I’m having blonde moments or senior moments!!!!!!!!!
Pray that God holds me tightly in his arms today. I have a feeling I’m going to need it!!!!
Love and hugs.
Pam
You guys are the best!
Today was tough. I got back to Duke this morning at 6:30. Mom is having some bouts with confusion. It’s so weird. One minute we are having a normal conversation about my daughter moving into her military base housing (her new husband has deployed to Iraq so guess who’s doing all of the moving? I told him he owes me big time when he gets home!) then in the next breath she wanted me to find out where those two dogs came from. (This would be the two dogs sitting on the sink in her room at Duke….sigh)
We tried to do a paracentesis this afternoon after she went to ultrasound and came back with a bandaid covering an “X” marks the spot on her abdomen. I stayed in the room with the doctors doing the procedure and actually gave advice on how to send the fluid for cytology.(my field of expertise). I’m going to get my Duke employees badge yet…..
We ran into problems. Mom had 3 c-sections in the early 50’s. The old kind where the scars run up and down. We were only able to remove 1/2 liter of fluid which did nothing to help the problem. We got enough to send for the labs but apparently the fluid is “caught in the pockets formed from the old scar tissue some of which has probably caused adhesions to the bowel. They’ve never bothered her or caused problems but we could not safely remove any more fluid. The physician was excellent because he called a stop rather than risk nicking bowel. My kind of guy (you’ve got to know your limitations!) Tomorrow we are going to reattempt the procedure but do it in real time under ultrasound.
The doctor was great but in the morning as he was explaining the procedure to Mom and Dad he brought up the subject of “advance medical directives”. Mom and Dad have living wills and have discussed wants but this was the first time we’ve really had a physician basically asking the equivilent of “if you code, do you really want to be resucitated or just made comfortable?”. I can assure you at that moment even though you think you are prepared, you truly experience an out of body moment.
I’ll be up early and back to Duke by 6:00. One funny moment. I usually wear my scrubs when we go to Duke. #1. Cause you can go anywhere in a hospital wearing scrubs. (I know every employee elevator) #2. It’s an outward sign that you probably know whats going on and it does give other medical personnel some level of comfort in knowing you can speak their language. I went down to the cafeteria when I arrived this morning and grabbed some breakfast. On the way back to Mom’s room I glanced at my receipt and discovered I’d gotten an employee discount. I felt bad and went back to let the cashier know she’d made a mistake. She laughed and told me I was an honorary staff member today.
I’ll let you know how things go tomorrow. Tonight I will fall asleep and say to myself….there’s no place like home……sigh. I miss mine but I know my Mom misses hers more.
Goodnight my friends and confidants….
Hugs to all, God bless you all.
Pam
Carolynle,
First of all welcome to this site. I’m sorry you had to come and find us but you will find some of the most caring, loving and compassionate people here.
Let me give a stab at helping with some of your questions.
Here is a link to a very good site concerning lab tests and results:
http://www.labtestsonline.org/
My Mom’s AFP levels are done every time we travel to Duke for her appointments. (Right now about every three weeks to a month). My mom is currently taking an oral chemo drug called Xeloda.
Regarding appetite, we have had amazing results with the drug Megace. She takes a liquid form (Just 20mg one time a day). It stimulates the appetite and she has managed to maintain her weight beautifully. (If they ever find a drug to make you not want to eat and lose weight that works as well as this one then someone will be rich!)
In regards to the burping and GERD issues, Mom’s oncologist has recently prescribed PROTONIX, which seems to be working well. She had been using the usual over the counter stuff but it was working less and less.
As to the constipation issue if you can encourage drinking more water that may help. Stool softeners are also helpful.
There are also drugs that can help with the anemia. I would try and have a frank discussion with your physicians.
Don’t feel shut out when your husband seems to want to withdraw. He’s probably dealing with coming face to face with his mortality and having cancer can mean dealing with the loss of control in your life. There are some very good articles on the American Cancer Society website as well as the Hospice and Palliative care sites.
Finally, (yes I know this is a lengthy post…lol) the first rule of caregiving is: (drum roll here)…….YOU HAVE TO TAKE CARE OF THE CAREGIVER FIRST!!!
Take some time for you. It doesn’t have to be major but try to do something nice for yourself every day. Even if it’s only 5 or 10 minutes. You will feel better.
Your husband is lucky to have you. We are all here for you and hope you will return often. We are all just a keystroke away!
Hugs and love to you and your husband,
Pam
Magic,
There is a wonderful community of support for you here. Unfortunately far too many have already walked in your shoes. My heart goes out to you in the loss of your wonderful husband.
Just know we are all only a keystroke away. I would also recommend reading the posts of Dr. Giles.
You will find him under the patient support tab at the top of the page. (underneath where you log into the discussion boards.
You are in my thoughts and prayers.
Hugs to you,
Pam
