cherbourg
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Tonia,
First of all let me say how sorry I am for your loss. Your Grandmother left a wonderful legacy in you. I have been so touched by your posts about her and impressed by your kindness, compassion and help for her.
Every family and every person will have issues when it comes to dying. It’s hard for lots of people to deal with and most don’t like to think about it – much less discuss it. I’m guessing your family members are feeling lots of different things. Maybe some are thinking they should have done more and are feeling guilty. Maybe it’s a little to close to home for some to deal with.
It will get better. Emotions are raw and this is a very stressful time of the year at best. Keep your focus on the good memories and know that you did everything you could for your grandmother.
As I said before your grandmother has left a wonderful legacy in you. That said, you are NOT her replacement. If there are things you want to do for the family do them if not don’t. Right now just treasure the memories and mourn your loss. You may only be 28 in years but you as much older when it comes to compassion, empathy and love.
Much love to you. You are an amazing woman!
Hugs,
Pam
I’m so glad you got the information you needed from the website I posted. I work in the medical laboratory but since I work in Pathology, I sometimes need the background stuff from the clinical side of the lab. I can’t tell you the number of times I refer to labtestsonline.
I’m so sorry about your Dad. I will keep you and your family in my thoughts and prayers.
Hugs,
PamDear Sophie,
Here is a link about acites.
http://www.merck.com/mmhe/sec10/ch135/ch135e.html
Restricting salt and using diuretics can help. In the event that it becomes uncomfortable, the fluid can be drained by a procedure called paracentesis.
Remember this cancer is different from most of them in its’ unpredictability. Ask your doctor about draining the fluid to make you more comfortable. My mom had a pericardical effusion which is a buildup of fluid around her heart. She had it removed and is stable right now.
Know you are in my thoughts and prayers today and everyday. Hugs to you.
Pam
Aneux,
Definitely get a medical power of attorney. Then you are entitled to know everything and have the legal right to this information. Your doctor may be worried about HIPPA standards which have to do alot with privacy issuses. HIPPA stands for Health Insurance Portability and Accountability Act. Here is a link that explains it:
http://www.opm.gov/insure/archive/health/cbrr.htm
It has lots of good points in it but your doctor may be erring on the side of caution.
When my mom was diagnosed they got living wills made, power of attorney and medical power of attorney with my dad and my sister and myself listed on all. I’m in the medical field and I will tell you that the squeaky wheel will eventually get the grease. If your questions are not answered – KEEP ASKING. I have issues with a physician that refuses to answer questions unless he was explicitly bound by your husband’s wishes. (Back to the HIPPA issue)
I once explained it to my mom like this. If you take your car in for service, watch them spend all day doing tests on it and then they say we’ll get back to you in a few days and maybe then let you know something, you would have a fit. Remember when all is said and done in medicine you are ultimately paying for a service and deserve to get the best for your money.
Most of the clinicians I know and work with are compassionate and caring. Before your husband’s next appointment call and ask to speak with the doctor’s nurse or triage nurse and explain that he is having a hard time dealing with the ramifications of his cancer and that you need definite answers to help him make decisions when you are talking together at home. Tell them to pass along to the Doctor that you will have a list of questions that you will need answers for and will bring it to the next appointment.
At that appointment ask the questions. (Hopefully leaving a copy of your medical power of attorney with the office).
You are in a “war” here and you will need all the information you can gather to make decisions and plan strategies. This board is a wonderful resource and we all help each other.
I know it’s frustrating to have to learn a new language but your husband is fortunate in having you as his advocate. Hang in there. We are all on a journey that none of us wanted to take and the accomodations all stink!!!! Come here and vent, ask questions and know we are all here for you!
Pam
Robyn,
Welcome. You are in very good company here with wonderful support and advice. I suggest reading some of the posts and posting any questions you may have. Check the search box first when you have a question. I’ve found most of my questions had already been asked and got wonderful advice and answers. These are some of the most compassionate caring people I’ve ever met.Know that you and your mom will be in my thoughts and prayers.
Hugs to you both………
Pam
Just another thought on the subject…..There is also a benign condition called Bell’s Palsy. I woke up one morning and wondered if I had had a stroke. It’s a condition that will rectify itself. Here’s a link for more information:
Just a thought………..
Mary Anne,
I’m following your blog everyday and was so touched by the relationship your soon to be married daughter has with her Dad. Our wedding is on the 20th and I’m praying my Mom is going to be able to be there. She so far is hanging in there but I’m hearing some stress in my Dad’s voice concerning her general status.
I ( and my coworkers here in the lab) stood in tears and read about Joe giving her away.
I’ll keep you and yours in my prayers. Please do the same for us as my soon to be son-in-law will deploy again to Iraq in mid-January.
Stay strong and give Joe and yourself a big hug!
Pam
Chris,
What a beautiful and loving tribute to your wife Elaine. Although your time together was way too short it seems that a great deal of love was shared. Your wife leaves a wonderful legacy to you and your daughter Isabel of what it truly means to have not only lived a wonderful life, but a life full of the things that really matter. She sounds like a wonderful spouse and mother.
Please know that you and your daughter will be in my thoughts and prayers today and during this very difficult time in your lives.
Pam
Hi Barbara,
I know it’s frustrating trying to decipher lab tests. I work in the Medical laboratory and here is a website I use frequently. It’s sponsored by all of the national groups and agencies that monitor medical labs so it’s a realiable one. Maybe it will help:
http://www.labtestsonline.org/
Also don’t hesitate to call your doctor’s office and ask to speak to the “triage” nurse and give her your questions that need answering or to pass along to the doctor if she can’t answer them. You don’t need to be endlessly worried til your appointment. As I tell my Mom and Dad, you are paying for a service and should get your money’s worth. *grin*.
Also remember when your doctor does multiple tests, he’s not only looking at actual values or results but also at the larger picture of how these tests can fit together.
In regards to staging here is another website:
http://www.cancer.gov/cancertopics/factsheet/detection/staging
Once a cancer has spread to another organ, it’s generally considered Stage IV. For instance since my Mom’s CC has spread to her lungs by the time she was diagnosed her cancer was considered Stage IV.
Hope this is helpful. Know that you will be in my thoughts and prayers!
Cherbourg
Carol,
This is a great article!
Jean,
One thing to remember about statistics is that when you read them they are already out of date. Ex. 5 year survival rates. By the time you read these numbers they are five years old. With new technologies occuring every day in medicine these are merely guidelines.
God made eveyone of us unique and the way everyone reacts to this disease is unique.
Keep the faith!
Cherbourg
Oh Iris,
I know how you feel! This has always been my favorite time of the year and this year in addition to the holidays we have moved my daughter’s wedding up a year due to the diagnosis of my Mom and the deployment of her groom back to Iraq in January.
I have been home since Sunday in bed with a horrible bug and missing work and not getting anything done on my daughter’s wedding which is on the 20th of December. This is a time I really want my Mom to be with me. I’m thankful to God that right now she is hanging on, doing reasonably well and able to go to church and out with my Dad. She is an amazing woman. Her diagnosis was an incidental finding when she had a bout with pleuracy while still working full time at 76. I didn’t lose my grandmothers til they were in their mid nineties and fully expected to have my Mom with me for a much longer time.
I hate this horrible disease. I know the rage and frustration about this monster. Please know that you and your dear Peter will be in my thoughts and prayers during this holy season. I know that God has a plan and while we can’t always see it, I know that He is there for me.
Please remember to take care of you the caregiver. Peter is lucky to have such a loving spouse. I wish I could take away all of our pain and sadness. Know that you are only a computer away from those of us that really understand what you’re feeling.
Take care of the both of you.
Cherbourg
Hi Roma,
My Mom is 77 and has CC with lung and pericardial metastatis. She was on Oxyliplatin and Gemcitibine along with the pill Nexavar. After a recent bout with a pericardial effusion that caused her some heart issues (which were able to be fixed) her Oncologist put her on the pill Xeloda. So far she has had not one side effect with the drug. She and my Dad are careful about checking for side effects which are mostly issues with the hands and feet and mouth. She uses hand cream on her hands and feet daily and checks her mouth for any sores. (She switched her toothpaste and mouthwash to a brand called biotene on the recommendation of Duke’s cancer clinic in the beginning of chemo.)
I can’t promise you your dad will be the same but we’ve been lucky. As to stablizing the tumors I don’t know yet since we’ve not had any scans since switching to the Xeloda.
The company that makes the drug is excellent as far as patient resources. I’m in the medical field but the patient information is in a very readable format and they have a help line as well. I was impressed with the kit that comes with the drug.
I know how hard it is with this disease to try and decide what to do. With its’ rarity there really isn’t a definite protocol for how to treat this horrible disease. I would give you the same advice I gave my Mom and Dad. Try it. If it isn’t working or the side effects become uncomfortable then stop it.
I’ll pray for you and your family as I do all on this board dealing with this monster. Take care and keep the faith.
Cherbourg
Dear Jeff,
You have and continue to be a godsend here on this site. I’ve learned much from reading your posts and have smiled often through tears at your humor and ability to live your life to the fullest. Please know at this time of thanksgiving I am truly thankful to have the honor and privilage of your aquaintance on the net.
Have a hopefully pain free Thanksgiving and know that you and your family are in my heart and thoughts.
Pam
Mary Anne,
I can truly understand your grief. We too are planning a wedding. My mom has cc and I am helping my Dad be care giver to her and planning my daughter’s wedding which will be on December 20th. I live 3 hours away from my parents but am coming and going a lot. (19,000 miles on my car since June).Let me share something I told my daughter when she and her fiance decided to move the wedding up a year (because of Mom’s Stage IV diagnosis and a possible deployment for the groom).
I can’t promise you that it’s God’s plan for your grandmother to be at your wedding but I can promise you that she will either be in the front pew or have the best seat in the church for your wedding. I know the same will be true for your dear Joe.
You and your family are in my thoughts and prayers.
Pam
Jan,
My heart goes out to you. I think the hardest part of this terrible disease is that there is no “recipe” or definite progression. Every patient seems different in how they react to the cancer.
There is a part of me that screams for a “rule book” for making all the right decisions, taking all of the right steps, saying and doing everything the RIGHT way!
It’s frustrating at times. Mostly I’ve fallen into the process of “doing 5 minutes and then doing the next five minutes.
You should pat yourself on the back and consider yourself for “angel status” (You already have my vote!). While we aren’t to the point of Hospice care yet, I know it’s coming at some point.
It’s helpful (but to be honest hurtful) to consider this is coming. Thank you so much for sharing your experiences and feelings. Believe me you aren’t alone in how you feel.
I will keep you and your family in my thoughts and prayers.
Cherbourg…..(Pam)
